A retrospective, observational, chart audit study of adults (N=159) who died in hospital.

Component hospitals of the Dartmouth-Hitchcock Medical Center: Mary Hitchcock Memorial Hospital (MHMH), Lebanon, New Hampshire, and the affiliated Veteran's Affairs Medical Center (VAMC), White River Junction, Vermont.

159 hospitalised adult decedents comprising a random sample of 100 MHMH decedents and a total sample of 59 VAMC decedents.

The authors compared end-of-life (EOL) care in decedents who had a palliative care consultation (PCC) with those who did not. An exploratory analysis compared the EOL care between the 2008 decedent sample and an historical decedent sample (N=104).

63 of 159 inpatients received a PCC. Decedents receiving a PCC were less likely to die in an intensive care unit, had fewer invasive interventions (eg, intubation, assisted ventilation, dialysis, chemotherapy) and were more likely to have advance directives, do-not-resuscitate orders and comfort measures orders than those who did not receive a PCC. Higher rates of emotional and pastoral care were also noted. Compared with the historical sample, 2008 decedents had a higher rate of invasive interventions, but fewer invasive interventions were noted in the 2008 PCC subsample.

Less invasive EOL care was observed in decedents who received a PCC. Ongoing monitoring of EOL care is critically important for hospital quality improvement programmes.

In-depth qualitative interviews with 50 people ranging in age from 30 to 93 years, diagnosed with cancer (31), heart failure (13), stroke (three) or neurological conditions (three) and thought by the responsible health professional to be in the last year of life. Participants from two areas of Northern England were recruited through specialist nurses or hospital consultants and interviewed in their current place of residence. Transcribed data were analysed using Framework.

Patients were most likely to recall the pace and clarity with which bad news was conveyed. A direct approach was most common, without much prior warning for the patients. Direct information was usually received well when the patient knew the health professional and when it had been suggested that the patient should be accompanied to the appointment. Some professionals did work to set the scene for the eventual news, with a gradual build-up of information, and narrowing down of options. This approach was perceived as appropriate and sensitive. People with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis.

Bad news is not always broken in a sensitive way, despite considerable efforts to address this issue. Relatively minor changes to practice could improve the patient experience: greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients.

Semistructured interviews were held with a purposive sample of 10 men with symptoms of CHF. Data were analysed using a constant comparative approach until thematic saturation.

Four key areas emerged: medication use; symptoms; prior morphine experience; and attitudes, concerns and anxieties regarding morphine use. Despite polypharmacy, participants said that morphine would be acceptable if it was monitored by a trusted healthcare professional. Many patients had experienced morphine before, often in life-threatening situations such as myocardial infarction, when it had helped greatly. Opioids were not strongly associated exclusively with death and dying (in contrast to patient reports in the cancer literature).

Although some concerns about morphine were expressed, these did not appear to override a willingness to consider its use if recommended by a trusted clinician. However, some participants perceived that their doctor was concerned about its use, holding it as a last reserve. Morphine appears to be an acceptable breathlessness treatment option to these people with CHF. Prescribers may need education and reassurance if these medicines are to be used to their full potential and views may be different in other communities.

Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS).

The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians.

In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs).

All deaths of patients (n=788) known to the specialist palliative care service from 1 January 2009 to 31 December 2010 were examined in a service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when patients did not achieve this preference.

69% of patients (n=263) who expressed a preference to die at home and 82% of patients (n=93) who expressed a preference to die as inpatients in the hospice fulfilled these preferences. 71% of patients (n=298) who wanted to die in their current place of residence achieved this preference.

54% of patients (n=121) who declined to express a preference for end-of-life care subsequently died in hospital, reflecting the importance of advance care planning.

The perceived lack of social support for patients dying at home is a significant trigger for admission to a hospice. The provision of sitters to support patients dying at home may ensure people achieve their preference. Commissioners consider preferred place of care to be a marker of quality, but clinical events that precipitate admission are often outside the influence of the palliative care team.

In 2006, the interhospital working team implemented a certification project based on the JCI Disease or Condition-Specific Care (DSCS) programme. Thirty standards subdivided into five functional areas with 150 measurable elements were the starting-point for periodic improvement plans within and across participating hospitals. Programme compliance was analysed in terms of annual performance improvement and consistency across the seven PCUs involved in achieving set goals. The JCI standards were applied on 3316 terminally ill patients with cancer treated at home from 2005 to 2009.

As a result of the work carried out, the JCI survey conducted 3 years after project implementation demonstrated full compliance with the established standards, leading to the JCI certification award (for the first time in this clinical setting internationally).

The work carried out with a view to certification has confirmed the possibility that facilities spread across different hospitals can actually share common processes and standardise the activities for the care of end-of-life patients with cancer at home as if they were one single service provider.

Prospective multicentre observational cohort study.

18 palliative care services in the UK (including hospices, hospital support teams, and community teams).

1018 patients with locally advanced or metastatic cancer, no longer being treated for cancer, and recently referred to palliative care services.

Performance of a composite model to predict whether patients were likely to survive for "days" (0-13 days), "weeks" (14-55 days), or "months+" (>55 days), compared with actual survival and clinicians' predictions.

On multivariate analysis, 11 core variables (pulse rate, general health status, mental test score, performance status, presence of anorexia, presence of any site of metastatic disease, presence of liver metastases, C reactive protein, white blood count, platelet count, and urea) independently predicted both two week and two month survival. Four variables had prognostic significance only for two week survival (dyspnoea, dysphagia, bone metastases, and alanine transaminase), and eight variables had prognostic significance only for two month survival (primary breast cancer, male genital cancer, tiredness, loss of weight, lymphocyte count, neutrophil count, alkaline phosphatase, and albumin). Separate prognostic models were created for patients without (PiPS-A) or with (PiPS-B) blood results. The area under the curve for all models varied between 0.79 and 0.86. Absolute agreement between actual survival and PiPS predictions was 57.3% (after correction for over-optimism). The median survival across the PiPS-A categories was 5, 33, and 92 days and survival across PiPS-B categories was 7, 32, and 100.5 days. All models performed as well as, or better than, clinicians' estimates of survival.

In patients with advanced cancer no longer being treated, a combination of clinical and laboratory variables can reliably predict two week and two month survival.

To review all smartphone apps targeted at health professionals within palliative medicine and available for the five most popular operating systems (iPhone, Blackberry, Android, Palm and Windows) .

Each smartphone app store was systematically searched with a combination of the following keywords: palliative, pain, cancer, symptoms, medicine. Identified apps were purchased and tested to determine if their title and/or description was relevant to palliative care.

Six apps specific to palliative medicine were identified across all five operating systems. These consisted of blog orientated apps (Pallimed and Geripal), an app containing guidelines from eight cancer networks (PalliApp), an educational app (Palliative Care) and opioid dose converter apps (eOpioid and PalliCalc).

There is a lack of palliative medicine specific resources for smartphones and no studies have been published which examine the potential benefits of mobile technology for learning, clinical practice and professional development. This provides an opportunity for further research and development. Academic institutions could work with technological developers to improve access to, and dissemination of, key information for practice. Considered development of mobile technology has the potential to improve patient care, data sharing and education within the palliative medicine specialty.

Qualitative study using semistructured interviews followed by thematic analysis.

Respondents recruited from different parts of the UK during 2009/2010.

16 people with experience of pancreatic cancer (8 patients and 8 bereaved relatives) who discussed place of death in detail during an in-depth interview (from a total sample of 32 people with pancreatic cancer and eight relatives of others who had died of this disease).

People's preferences were affected by their perceptions and previous experiences of care available at home, in a hospice or hospital. Preferences were also shaped by fears about possible loss of dignity, or fears of becoming a burden. Some people thought that a home death might leave bad memories for other members of the family. People with pancreatic cancer and their relatives were aware that preferences might change (or had changed) as death approached.

The National Health Service End of Life Care Strategy for England seeks to meet the needs of people who are dying and promotes better support for home deaths. More information is needed about why patients hold different views about place of care and place of death, why patients' preferences change and what importance patients attach to place of death. Health professionals should bear this in mind if the subject is raised during advance care planning.

Resident physicians, as part of an educational intervention, co-administered the dignity therapy protocol with the principal investigator. Interviews were transcribed, edited, and then, within a week, read back to the patient and provided as a document for the patient to keep. A constant comparative approach was taken to identify narratives and thematic patterns.

12 Patients at the end-of-life were administered dignity interviews by 12 resident physicians, accompanied by the principal investigator.

Palliative care settings in two University of Toronto academic hospitals.

Three narrative types emerged, each containing several themes. Evaluation narratives create a life lived before illness, with an overarching theme of overcoming adversity. Transition narratives describe a changing health situation and its meanings, including impact on family and on one's world view. Legacy narratives discuss the future without the patient and contain the parables and messages to be left for loved ones.

While the interview protocol guides patients' responses, the commonality of narrative structures across interviews suggests that patients draw on experiences with two familiar genres: the eulogy and the medical interview, to create a narrative order during the chaos of dying. The dignity interview's resonance with these genres appears to facilitate a powerful, and perhaps unexpected sense of agency.

Semi-structured interview study. Data were analysed using framework analysis.

A specialist cancer centre and six district general hospitals across the Yorkshire Cancer Network.

18 randomly selected professionals from lung, breast, urology and colorectal cancer teams: oncologists (n=8), surgeons (n=3), clinical nurse specialists (n=2) and ward nurses (n=5).

Three main themes emerged relating to professionals' attitudes, knowledge and behaviour. Positive attitudes were primarily expressed by nurses. However, negative views were expressed about the potential for over-reliance on ADs, and their use constituting ‘giving in’. Doctors reported a lack of confidence in the use of and knowledge about ADs with an associated reluctance to prescribe. The general practitioner (GP) was regarded as the most appropriate professional to prescribe ADs.

Cancer professionals highlighted a need for training in the appropriate use of ADs. Further, this research suggests that negative attitudes towards antidepressants may be a factor in their exclusion from treatment plans. The GP is seen to have a key prescribing role for AD therapy; however, it is unclear whether the GPs is asked to do this. This research raises questions about the adequacy of ADs in cancer care and to what extent the GP is able to meet this need.

Retrospective data linkage study.

United Kingdom, 1971–2006.

A random sample from death registrations (5%) of parents who had a live birth where the infant lived beyond its first year of life (non-bereaved parents) and parents who had experienced a stillbirth or the death of a child in its first year of life (bereaved parents) between 1971 and 2006.

Death or widowhood of the parent.

Bereaved parents in Scotland (n=738) were more than twice as likely to die in the first 15 years after their child's death than non-bereaved parents (n=50 132), p<0.005. Bereaved mothers in England and Wales (n=481) were more than four times as likely to die in the first 15 years after their child's birth than non-bereaved parents (n=30 956), p<0.001. The mortality risk for bereaved mothers compared with non-bereaved mothers, followed up for 25 years after death, was 1.5 (bereaved n=745, non-bereaved n=36 434), p<0.005. When followed up for 35 years, the risk of mortality for bereaved mothers (n=1120) was 1.2 times that of non-bereaved mothers (n=36 062), p<0.005.

Bereaved parents who experience stillbirth or infant death have markedly increased mortality compared with non-bereaved parents, up to 25 years (mean) after the death of their child. However, the RR reduces over time.

Demographic data were collected from the electronic patient record system, with additional information obtained from the patients themselves. Patients were questioned about a variety of end of life issues, including preferred place of death (PPD), and ‘acceptable’ places of death. They were also asked to rank the importance of factors previously linked to a ‘good death’.

120 patients participated in the study. 51 (42.5%) patients stated that ‘home’ was their PPD, while 80 (67%) patients stated that home was an acceptable place of death. Patients from areas with worse deprivation scores were less likely to want to die at home than patients from areas with better deprivation scores (p=0.03). The most important factors associated with a good death were ‘to have my pain/symptoms well controlled’, ‘to not be a burden to my family’ and ‘to have sorted out my personal affairs’ respectively. Place of death was ranked as the seventh most important factor.

Place of death is undoubtedly an important factor in achieving a good death for some patients and carers. However, for others a home death is either unimportant or to be avoided. The results of this study, and the results of similar studies, suggest that place of death may not be a good marker of the quality of end of life care.

A phase II open-label trial.

Two UK National Health Service trusts.

45 adults with advanced cancer.

Dignity therapy: a brief palliative care psychotherapy.

Participants were randomly allocated to receive the intervention plus standard care or standard care only (control group). Outcomes were collected at baseline and at 1- and 4-week follow-up.

The primary outcome was dignity-related distress (Palliative Dignity Inventory). Secondary outcomes were hope, anxiety and depression, quality of life, palliative-related outcomes, and self-reported study benefits.

45/188 (24%) patients responded. 27/45 (60%) participants remained at 1-week and 20/45 (44%) at 4-week follow-up. Baseline levels of distress were low. Groups did not differ in dignity-related distress at any time. An effect on only one secondary outcome was found: the intervention group reported more hope than the control group at both follow-ups. Effect sizes were medium (partial ²=0.20 and 0.15) and the difference was statistically significant at 1-week follow-up (difference in adjusted means 2.55; 95% CI –4.73 to 0.36; p=0.02). The intervention group was more positive than the control group on all the self-reported benefits ratings. Effect sizes (Cohen's d) ranged from 1.34 for feeling that dignity therapy had helped to 0.31 for increasing will to live.

The effects of dignity therapy on people with advanced cancer are encouraging. Further investigation is warranted focusing on distressed patients and those earlier in the palliative care trajectory.

ISRCTN29868352.

Clinical data and duration of hospitalisation were prospectively collected between January 2007 and December 2008. A group of cancer pain patients from 2006 served as a historical control.

The number of consultations increased from 130 in 2006 to 235 in 2008. The reason for consultation changed from pain in 98% of consultations in 2006 to a diversity of palliative symptoms in 2008. In 2008 a significant decrease in mean pain intensity, including a 70% reduction in severe pain, occurred within 24 h following consultation, although the authors did not demonstrate that the effectiveness of the PCT in 2007 and 2008 surpassed that of routine oncological care including pain control in 2006. Similarly, the median severity for 7 out of 10 items from the Edmonton Symptom Assessment System (ESAS) decreased significantly within 72 h following consultation. The median number of days in hospital for patients for whom the PCT was consulted decreased from 14 days in 2006 to 10 days in 2008.

The authors conclude that a multidisciplinary PCT for clinical cancer patients may have a positive effect on pain, on ESAS symptoms and on duration of hospitalisation.

To use data from the National Care of the Dying Audit - Hospitals (NCDAH) to explore the administration of medication for management of agitation and restlessness in the last 24 h of life.

Hospitals submitted data from up to 30 consecutive adult patients whose care in the final hours/days of life was supported by the Liverpool Care Pathway for the Dying Patient (LCP). Data on the total dose received in the last 24 h of life PRN and the last dose prescribed for administration via continuous subcutaneous infusion (CSCI) for agitation and restlessness were submitted.

155 hospitals provided data from 3893 patients. Median total doses in the last 24 h for midazolam, haloperidol and levomepromazine, respectively, were: PRN only, 2.5, 1.5 and 6.25 mg; CSCI only, 10, 3 and 6.25 mg; PRN+CSCI, 15, 3 and 12.5 mg.

Only 51% of patients received medication to alleviate agitation and restlessness in the last 24 h of life. Median doses were low in comparison to doses recommended for continuous deep sedation, suggesting that there is no ‘blanket’ policy for continuous deep sedation at the end of life for patients whose care is supported by the LCP.

The objective of this paper is to debate the available physiological evidence for a rapid analgesic response to acupuncture in the context of the needs of the patient with cancer BTP, current interventions, acupuncture technique and the practical considerations involved in administering treatment rapidly and safely.

Current evidence suggests that acupuncture has the potential to produce rapid and effective analgesia when needles are inserted deeply enough and manipulated sufficiently. For cancer BTP this represents a possible adjunctive treatment, and consideration should be given to administering acupuncture alongside ‘rescue’ doses of medication to ‘kick-start’ the analgesic response before the medication takes effect. However, research is needed to provide evidence that acupuncture is effective for BTP in cancer, and the feasibility, practicality and safety of patients administering acupuncture themselves must also be taken into account.

To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS.

Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention.

There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.

30 patients with cancer accessed and administered a placebo of each product and were asked to rate them using 1–7 Likert agree–disagree scales and free-text responses, with regard to ease of access and administration, palatability and overall impression. Participants rated their usual rescue analgesic similarly, based on recall. They also indicated whether they would be prepared to use the fentanyl product, and their most preferred.

For accessibility, the usual rescue analgesic was rated best (median score 3), significantly better than the buccal/sublingual tablet (p=0.01) and nasal spray (p<0.01), but not the sublingual tablet. Conversely, the nasal spray was rated significantly worse (median score 7) than the others (p<0.01). For ease of administration, the usual rescue analgesic and sublingual tablet were rated equally best (median score 1), with only the latter being significantly different to the buccal/sublingual tablet (p=0.04) and nasal spray (p=0.05). For palatability, the sublingual tablet was rated the best (median score 2), but was significantly different only to the buccal/sublingual tablet (p<0.01). For overall impression, the sublingual tablet was rated significantly better (median score 3) than the others, with more patients prepared to use it and selecting it as their most preferred (27 and 18, respectively).

This survey provides valuable insight into the practical aspects of these three transmucosal fentanyl products for practitioners considering their use.

To ascertain the number of patients who, following a discussion, were discharged with a DNACPR form and the reasons for not holding discussions with certain patients.

Two retrospective case note reviews of 50 patients discharged over two 4-month periods (2007 and 2009).

There was a high proportion (78–80%) of CPR discussions for patients discharged from the hospice. Reasons for not discussing CPR were: potential for excess distress (10–12% 2007 and 2009) and lack of time (4% both years). Of those discussing CPR on discharge, 90% took forms home in both years. The reasons patients did not take forms home were: form not taken in error (two patients in 2007); patients refusing a form at home (one and three patients in 2007 and 2009); form to be arranged by general practitioner and one incomplete discussion. The proportion of patients with forms already at home increased from 10% (2007) to 28% (2009).

It is possible to discuss CPR with a high proportion of hospice patients prior to discharge from a hospice. Following the introduction of an integrated policy, more patients have DNACPR forms prior to admission. Most patients receiving specialist palliative care find DNACPR discussions acceptable and understand the benefits of having a DNACPR form.

Retrospective clinical note review.

16 acute hospitals, covering 5 Health and Social Care Trusts across Northern Ireland.

793 adult patients with cancer who died in an acute hospital between July and December 2007 identified through the Northern Ireland Cancer Registry. Information was available for 695 (88%).

Thee main reasons for acute hospital deaths were uncovered. First, 26.3% of patients were diagnosed with cancer during their last hospital admission. These patients were significantly different from the rest of the sample in being older, not partnered, having more comorbidities and fewer hospital admissions in their last year of life (all p<0.001). Second, patients were very ill with 78.7% admitted as an emergency, requiring medical attention as a result of cancer-related (37.4%) and urgent physical symptoms (33.5%). Third, despite 38.3% of patients specifically requesting discharge to their usual residence, hospice or other hospital, this was not achieved. For 76.3%, this was owing to a deterioration in their medical condition. However for 12.4% there was a lack of a suitable bed, a care package was not in place for 4.9% and 3.0% lacked the required family support. In addition, preferred place of death was only recorded for 41% of patients.

Late diagnosis of cancer is a problem which requires further research. Training should be in place to ensure that a patient's preferred place of death is discussed, recorded and made part of routine end of life care. To achieve this, all medical staff should know when a patient is dying. Further research is required to establish what enables patients with cancer to die at home.

A cross-sectional survey with 4-week follow-up.

St Christopher's Hospice, Sydenham, South London, which is a large hospice with homecare, outpatient and inpatient facilities serving five London boroughs.

300 patients newly referred to the hospice for palliative care.

The Desire for Death Rating Scale (DDRS).

At T1 33/300 (11%) reported DHD and 11/300 (3.7%) had more serious or pervasive DHD. Of those who expressed DHD at T1 and were interviewed at both time points, 35% no longer reported these thoughts. Of those who reported no DHD at T1, 8% reported DHD at T2. The majority of those who had more severe DHD at T1 had a reduced DHD score by T2. Factors associated with T1 DHD included presence of non-malignant disease, depression, more severe physical symptoms, hopelessness and perceived loss of dignity.

The prevalence of DHD was at the lower end of that seen in previous studies using similar samples. More severe DHD was uncommon and for most part remitted to some extent during the study. The provision of symptom control and timely detection and intervention for depression coupled with a focus on optimising function, instilling hope and preserving dignity are likely to contribute to alleviation of DHD in patients with advanced illness.

Cross-sectional survey.

Princess Margaret Hospital, Toronto, Canada.

747 patients with stage IV gastrointestinal, breast, genitourinary or gynaecological cancer, or stage IIIA, IIIB or IV lung cancer, recruited from 2002 to 2008.

Spiritual well-being as assessed by the FACIT-Sp-12.

Using structural equation modelling, spiritual well-being was specified as being predicted by religiosity, self-esteem, social relatedness and the physical burden of disease. The model had a good fit, Comparative Fit Index=0.96, Non-normed Fit Index=0.94, Root Mean Square Error of Approximation=0.057. Standardised path coefficients relating each factor to spiritual well-being were as follows: religiosity 0.50, social relatedness 0.28, self-esteem 0.26 and physical burden –0.11.

The authors confirmed our theoretical model in which spiritual well-being is positively associated with religiosity, self-esteem and social relatedness, and is negatively associated with physical suffering. Our findings support a multidimensional approach to spiritual well-being that addresses not only religious issues, but also pain and symptom control, and the potentially damaging effects of advanced disease on self-worth and close relationships. The spiritually informed clinical encounter may be one in which sufficient time and opportunity for reflection are afforded to consider illness trajectories and treatment decisions in the context of religious beliefs and personal values, self-worth, support systems and concerns about dependency.

A cross-sectional study in which participants completed the Social Difficulties Inventory (SDI-21) in English, Urdu, Punjabi or Hindi followed by a semi-structured interview.

Participants comprised 26 men and 29 women of SA origin ranging between 18 and 80 years of age. The commonest primary languages were Urdu (n=17) and Punjabi (n=17). English was the primary language of three participants. A range of cancer diagnoses and stages of disease were represented.

Patients were recruited from outpatient haematology and oncology clinics in Bradford, Airedale and Leeds hospitals.

SA cancer patients welcomed routine assessment of social difficulties as part of their cancer care. They reported higher levels of social distress than found in earlier studies of white British patients. The majority managed their social difficulties themselves with little discussion with the clinical team, although, at times, this would have been welcomed. SA patients lacked information and were unaware of the support available to them, especially when language was a barrier.

Introduction of routine assessment of social difficulties into cancer care will require not only relevant and accessible screening tools such as the SDI-21, but also staff trained to respond to the difficulties disclosed, with knowledge of information sources and supportive care services when patients request these.

Qualitative focus group study with 24 health professionals from an acute hospital, a community hospital and a hospice.

Findings Participants agreed that provision of appropriate privacy options was key to achieving an optimum physical environment. However, there was little consensus as to whether single room accommodation or multi-bed accommodation was the most appropriate. A comfortable and homely environment is important, but difficult to achieve in a clinically focused environment. The hospital environment may also be suboptimal for staff provision of care. The environmental needs of families should be considered alongside the needs of patients.

Many deficiencies exist in physical hospital environments for patients at the end of life. However, changes to the hospital environment are limited by resource restrictions, increasing rules and regulations, and a focus on clinical aspects of care. Further research is needed to establish patient and family views about the optimum physical hospital environment, to explore ways in which an appropriate environment can be most effectively achieved and to ensure engagement with planners, designers and stakeholders when commissioning new hospitals or renovating existing facilities.

Systematic review.

Child and adult services and interface between healthcare providers.

Young people aged 13–24 years with palliative care conditions in the process of transition.

Young people and their families' experiences of transition, the process of transition between services and its impact on continuity of care and models of good practice.

92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focussed on common life-threatening and life-limiting conditions. No standardised transition program identified and most guidelines used to develop transition services were not evidence-based. Most studies on transition programs were predominantly condition-specific (eg, cystic fibrosis (CF), cancer) services. CF services offered high-quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings.

Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development.

Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.

21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.

Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.

Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.

Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.

This was a retrospective analysis of routine hospital data from two EDs in South London. Patients aged 65+ living in the hospitals' catchment area who died in the ED during a 1 year period (2006–2007) were included. Palliative care needs identified by diagnosis and symptoms, and problems likely to benefit from palliative care documented in clinical records 3 months prior to the final ED attendance were extracted.

Over 1 year, 102 people aged 65+ died in the ED, frequently following an acute event (n=90). 63.7% presented out of hours. 98/102 were admitted by ambulance, over half (n=59) from home. Half (n=50) had attended the same ED or been admitted to the same hospital in the previous 12 months. Over half (58/102) presented with diagnoses that signalled palliative care need. Of these, 29 had recorded symptoms a week before death and 28 had complex social issues 3 months prior to death. Only eight were known to palliative care services.

There is considerable palliative care need among older people who ultimately died in the ED, of whom only a minority were known to palliative care services in this study. Previous ED and hospital admission suggest opportunities for referral and forward planning. More older people in need of palliative care must be identified and managed earlier to avoid future undesired admissions and deaths in hospital.

A structured audit feedback meeting is held quarterly, open to all staff, volunteers and external healthcare professionals.

Following the feedback meeting a leaflet is designed and distributed to illustrate the presentation and actions to take forward.

Audit feedback sessions and leaflets have had a positive effect on clinician's understanding of the audit process and favourable outcomes in regard to their willingness to complete them, thus fulfiling one aspect of clinical governance while improving standards and patient care.

To design specific user experience surveys which are easy to administer, would provide meaningful feedback to enhance quality of care and inform future service developments.

Five surveys were designed by clinical teams with the help of Picker Institute Europe. Surveys were designed to be relevant to each clinical area. Hospice volunteers were trained in administering the electronic surveys. A survey about the inpatient discharge process was administered through SMS text messaging. The community survey was administered in written format with an option to complete on-line.

Results are providing useful feedback on inpatient and family experience of involvement in decisions about care, dignity, choice in food and help in eating, cleanliness and noise of the environment. Community survey results are providing us with feedback on patient experience on the effectiveness of symptom management and public surveys have provided peoples views on access to and knowledge of the hospice. The informal verbal comments given to volunteers are helpful in seeking to meet needs not picked up by the survey.

Results are providing useful information about different aspects of our service, which may not have been possible using standard written surveys. Staff and patients have commented on the ‘professionalism’ of the volunteers in administering the surveys and volunteers have enjoyed being involved in this project.

The use of bespoke surveys using electronic devices, administered by trained volunteers, is an effective way of gaining feedback from a variety of service users.

The aim of using the assessment tool was to enable parents to tell their story and to recognise and further understand their grief experience prebereavement; to identify what kind of support might be offered so that resources could be targeted more appropriately.

The assessment revealed a therapeutic value that enabled individuals to tell their story and parents reported a sense of being understood. Findings indicated those individuals who required additional support which helped in the management and provision of services.

The pilot revealed two important dimensions:

The modified AAG scale when used with parents can add significant information in understanding their grief experience prebereavement. The assessment alongside clinical judgement has enabled the identification of possible vulnerability as well as resilience, which can enable healthcare professionals to support families appropriately and target resources effectively.

The Expert Parents project was based on the adult expert patients programme to give self-confidence to adult patients to take responsibility for the management of their own long term condition while encouraging them to work collaboratively with health and social care professionals.

Haven House Children's Hospice and Interface (a parent led forum in Redbridge) worked together in partnership to deliver 30 knowledge and skills training sessions in 3 months across Redbridge. The project aimed to help parents manage their child's condition effectively.

The sessions aimed to empower, inform and educate parents/carers to become more expert in the care of their own children.

The project aimed to raise the profile of disabled children and views them to be both a local and national priority.

The project was aimed at all groups of children with disability and palliative care needs. The project aimed to provide knowledge, skills and information for parents about services so that they can make informed choices.

Information was provided about care pathways and transition.

The project aimed to build supportive relationships between parents and professionals

Parents and carers completed a standard questionnaire to evaluate each session

Parent's valued learning with other parents, gaining support and experience diminished isolation. They had an increased awareness of the services available and started to develop a new network of contacts. There were 287 attendances by parents/carers overall.

It was felt that the sessions allowed parents to open up and discuss issues, gave them hope for the future and made them feel positive. The project surpassed the expectations of the project team.

Many parents requested further training and highly rated the value of their sessions to become Expert parents.

Practical and emotional support provided by volunteers could be a cost efficient means to offer ongoing support between hospice respite stays. The project both fulfills our vision that, "No child or young person with a life-shortening condition should journey alone or unsupported," and considers the DH's end of life strategy championing the "Preferred Place of Care."

Patient and family demand for home based volunteers was ascertained using a survey and semi-structured interviews.

31% of service users responded, of which 97% (60 families) welcomed volunteer support at home. Numerous needs were identified that could be met by volunteers.

Findings indicate that a home volunteer co-ordinator is essential to match volunteers with families appropriately, liaise with other hospice teams and support volunteers. To ensure the safety of the scheme risk assessments, managing families expectations and an extensive volunteer training and support programme will be necessary.

Project evaluation will involve eliciting feedback from volunteers, patients and families on the impact of home based volunteering. It is hoped that home volunteers will relieve the burden on families with a life limited young person reducing isolation, depression and anxiety and encouraging normalisation.

Semi-structured interviews were conducted with 14 support workers from two hospices in the North West of England. Participants included gardening, maintenance, clerical, domestic and kitchen staff. Two managers were also interviewed to explore their views of support workers in the hospice. Site visits and non-participant observation were carried out in both hospices. A thematic analysis of the interview and observational data was conducted.

Support workers perceived their roles to be vital to the care offered to patients and families. They reported substantial interaction with patients and families, and put patients' needs first. They were willing to be flexible in carrying out their duties, recognising the need to show consideration to patients and families, who they believed valued their contribution. However, although support staff perceived themselves as an important part of the wider hospice team, they sometimes experienced isolation and division from other staff groups.

In some cases support staff felt that they were invisible workers within the hospice. Despite the importance they and their managers placed on their roles, this was not always reflected in the acknowledgement and appreciation they received, nor in support and training offered to them. In order to fully utilise this group of staff, their roles and contribution to patient care need to be acknowledged by hospices.

Carers are on-call to provide care at any time of the night. Requests for shifts will be generated by a District Nurse or Community Practitioner who will have completed a risk assessment of the patient and home environment. The service will provide care up until an alternative care package is arranged, up to a maximum of 48 h.

Success will be analysed by the number shifts provided, feedback from patients, patients' families and referrers to the service and analysis of intervention outcomes, for example number of admissions avoided or discharges expedited.

The feedback we have had from referrers and patients has been positive and supportive of the scheme. We have received a total of 41 referrals which resulted in the provision of a total of 61 nights of care which equates to over 535 h of patient support.

Initial findings suggest that the service will continue to expand and the number of referrals increase as the Community Practitioners and other referring staff become more familiar with the service. This is a 6 month pilot and we will be conducting a full evaluation at the end of this period.

To evaluate a long established service by exploring views of stakeholders.

A qualitative approach through focus groups, structured, semi-structured, telephone and face to face interviews. A purposive sample was used to select specific stakeholders. Interviews and focus groups with clinicians from the hospice and local district nursing teams, GP service representatives and hospice in patient unit staff. Analysis of key documents; service level agreements with PCTs, operational policy and record book of all contacts made to the service.

Primary reason for calls from healthcare professionals was for symptom management with 35.91% (weekend/bank holiday) from district nursing staff. 58.39% of calls were from carers.

Stakeholders were positive about the present service model.

There were recurring themes around more effective cross service boundary communication and improved knowledge and skills transfer to improve community staff competence and confidence.

The service model used is valuable for community healthcare professionals, patients and carers. The service responds to need and provides continuity of care over the weekend/bank holiday and OOHs period. Data collected from hospice nursing, medical staff and local healthcare providers ascertains what works well in practice with recommendations towards potential service development and improvement.

To develop volunteers to undertake clinical activity and enhance the inpatient experience, making better use of all resources.

The ward volunteers were approached with a proposal to expand their role. The staff were informed of the plans and their concerns addressed at an early stage; they were involved throughout the project.

The plan followed was:

An increasingly confident and flexible volunteer workforce with more involvement in clinical patient care. An efficient use of resources, releasing staff to focus on complex aspects of care, Volunteers are now offering ward administrative support, helping patients with creative activities and are becoming integral to all aspects of ward activity.

Developing volunteers in this way has taken investment of time and staff resources, resulting in an increased richness to the inpatient environment. Volunteers now utilise other skills so that they can participate more fully in the ward domain. Ward nurses now appreciate the volunteer input and rely on their presence; the changes have enhanced our skill-mix and increased our staff: patient ratios.

This paper will firstly, discuss the development of partnership working between a statutory sector specialist palliative care team (SPCT) and independent sector Hospice to deliver 7 day access to specialist palliative care assessment and intervention, across all healthcare settings; secondly, it will discuss the benefits for patients, families, services, the wider health community and economy.

The SPCT Clinical Nurse Specialists (CNS) base their service from the Hospice at weekends and Bank Holidays, where out of hour's advice calls from primary and secondary care have historically been received. This decision was made to support safe lone working, governance, access to medical and hospice support for CNS's, and streamline access to the service.

Evaluation of this initiative provides evidence of:

Partnership working between the SPCT and Hospice has enabled an innovative approach to the delivery of 7 day working that benefits patients, their families, and service providers.

A major grant from Help the Hospices and The Burdett Trust enabled an inner-city hospice to employ a Heart Failure Nurse Specialist to address the above issues. The work aims to:

The project already has significant findings:

The project plans to:

This presentation will outline the development and function of the Breathing Space Clinic, focusing on the rationale for our referral criteria and pathway.

Clinic development involved collaboration between the hospice, COPD patients, primary care teams and specialist respiratory teams across three London boroughs. It targets those patients with very severe COPD who have complex needs, including those arising from co-morbidities. Referral criteria are designed to reflect this approach and are grounded in an alternative model to that of palliative care provision for cancer patients. The referral pathway is designed to ensure NICE compliance. Relevant metrics are collected.

Our presentation will include reflection upon early data from the pilot.

Significant time and multi-disciplinary effort was required to develop the clinic concept to an operational level. Challenges were encountered in developing explicit referral criteria and these will be reviewed in light of the clinic metrics.

Collaborative interventions have potential to greatly improve patient care but require commitment and learning from all involved.

To explore palliative care doctors' knowledge and attitudes about corneal donation and to find if any associations with corneal procurement exist.

A postal survey was conducted that tested knowledge of corneal donation and asked about attitude and behaviour (past experiences). A 14 item questionnaire was sent to 427 practising palliative care consultants and associate specialists in the UK. A response rate of 50% was achieved and the findings were analysed using SPSS software and thematic content analysis. The study showed that over half (57%) of doctors had an inadequate level of knowledge about corneal donation but did have a positive personal and professional attitude towards it. There was a statistically significant association between their personal and professional attitude (ie, either both would be positive or both negative) with a significant association between a positive attitude and a higher mean knowledge score. The most common perceived drawback of discussing donation was fear of causing distress (36% of doctors gave this response). In practice, causing distress was reported by 4.8% of the doctors.

The study found an association between palliative care doctors' knowledge and attitude with procurement behaviour. Those that viewed donation positively had a greater amount of knowledge. Doctors tended to have the same professional view as their personal view. This could suggest that doctors bring their personal opinions into the work place and exhibit gate-keeping behaviour which could have implications for practice. The study also highlighted the differences between doctors' perceptions and actual experiences.

96 participants took part in nine one-to-one interviews and 13 focus groups (including 3 on-line groups) across England. Participants included people with LD (21), family carers (37), LD professionals (26), general nurses including cancer and palliative care nurse specialists (13), doctors including GPs and palliative care consultants (8).

Rather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.

To explore the prescribing patterns of transdermal opioids in palliative care patients in a UK Cancer Network.

A prospective audit was conducted over a 6 month period at 3 different sites. This incorporated palliative care patients in hospice, hospital and community settings. Data was collected following the initial specialist palliative care assessment of patients already prescribed transdermal opioids at the time of referral. Information was recorded relating to the original prescriber, documentation of indications, evidence of toxicity and use of breakthrough medication.

A total of 50 case notes were audited. Key findings revealed that indications for the use of transdermal opioids were only documented in 26% of patients. Over a quarter of patients had evidence of adverse effects, mainly opioid toxicity. The toxicity correlated with the strength of the transdermal opioid preparation rather than incorrect prescribing of breakthrough medication. However, results also showed that there appeared to be a lack of understanding as to appropriate doses of breakthrough medication.

There are clear situations in which transdermal opioids can be effective and well tolerated alternative step 3 opioids. However these audit results would suggest that there is a need for more education and training particularly among non-specialist prescribers in order to ensure the safe prescribing and administration of transdermal opioids.

The post was created to support the EoLC strategy by increasing access to palliative and EoLC services for patients with both malignant and non-malignant conditions and to improve the quality of care provided. The post sits with the NHS community rehabilitation team and is supported by the hospice based community palliative care MDT.

The post holder carries a specialist palliative care caseload, acts as an expert resource for colleagues, provides education, consults and helps ‘skill up’ generic therapists who may have had little or no exposure working with a palliative care population.

Review after 1 year of new service developments, structured feedback from colleagues within the service and in partnership organisations.

Increased understanding of the role and value of rehabilitation services in palliative and EoLC. Increase in number of palliative care patients treated by the team. Improved clinical care and patient satisfaction. Better coordination of care. Admission avoidance (on non-medical grounds). Key role enabling PPC to be achieved. Increase in advance care planning discussions and activities.

There has been an increase in access to adult community rehabilitation services and also improved quality of care provided to patients with a range of life limiting diseases through new service initiatives, sharing good practice and expertise and targeted education and training for team members.

The existence of the EoLC post has demonstrably supported local and national EoLC strategy by broadening access to palliative and EoLC services. Professionals within the team have developed skills and specialist knowledge thus improving their competence and confidence. Enhanced quality of care has improved the experience of patients, their families and carers.

The project aims to bring together two different organisations serving our local community in an innovative and purposeful way. It will raise awareness within three school communities of the role Ardgowan Hospice plays, and will help children to be less anxious about discussing and contemplating death, dying and bereavement.

The project involves hospice staff:

The proposed poster will present data collected through the use of workbooks and evaluation forms.

Early evaluation results have shown that there is an increased awareness of the work of Ardgowan Hospice at all three schools, and that the first meeting with the classes involved was invaluable. The focus of activities to date has been on the hospice's key values.

The project has enabled excellent relationships to be established. It is hoped that this kind of innovative and creative approach will begin to change attitudes to death, dying and loss in our local community.

To improve End of Life Care across Barnsley and increase documentation of personal preferences for care.

Care homes covered by two general practices were involved. Residents were assessed using the Gold Standards Prognostic Indicator Guidance and "The Surprise Question". Once identified preferences were recorded using the Preferred Priorities of Care Document (PPC), information was shared with Out of Hours care providers and care plans and simple pre-emptive prescribing put in place.

43 patients were identified as potentially being in the last year of life, had a PPC and a care plan in place. During the first 6 months of this pilot, 10 of the 12 deaths which occurred were in the patients' preferred place. Anecdotally, improvement in information sharing between professionals increased confidence of care home staff and quality of care, non-elective admissions and length of hospital stay reduced.

Local ownership by and drive from the health and social care professionals involved were key to the success of this project. Pro-active recognition of frail elderly at the end of life enables planning focused around individual wants and needs. Staff, families and patients found discussions positive. Recognition of need improved quality of care for this population. Resources now need to be identified in order to roll this initiative out across the locality.

A series of public events and road shows were staged, proving a very successful way to engage the public in discussion about death and dying and the importance of identifying future wishes. An End of Life care planning and choice questionnaire was used as a vehicle for this discussion. The questionnaire was also used with a range of health professionals allow some interesting comparisons.

A total of 304 questionnaires have been analysed.

Some of the initial findings include 86% of those who had completed questionnaires had talked to their family and friends, however less than 1% had discussed this with any Healthcare Professional. 60% of people hadn't made a will (53% of the professionals group).

The majority of people felt conversations around these issues should take place either when the person is well or diagnosed with a life-limiting illness but still well, however the majority of conversations still happen when people are very ill. Many eluded to missed opportunities for this to take place when they had had contact with health professionals.

Healthcare professionals should be much more pro-active in starting discussions when people are well and when they are first diagnosed.

The GP was often identified as the prime professional to do this.

Healthcare professionals responded in similar ways to the general public to most questions.

Patients are asked to complete the tool in the waiting area with the assistance of their carer if needed. There are four parts of the tool: the distress thermometer (rates ‘total’ distress from 0 to 10), a list of problems which can be ticked, problems are then ranked (1–4) and finally, an action plan is agreed. The tool was given to all patients attending the clinic between November 2010 and April 2011.

20 patients attended clinic over the 6 month period. 15 assessment tools were completed. 7/15 completed the distress thermometer (DT) with an average score of 5 (range 0–9). 3 patients completed a subsequent thermometer assessment. One score decreased from 9 to 8 and the other 2 scores increased (3–7 and 3–5). Numerous unmet needs were highlighted including: Worry, fear or anxiety 4/15, anger or frustration 4/15, breathing difficulties 4/15, and mobility issues 5/15. Examples of comments included worrying about "lack of independence" and "who will look after my dog".

By using this tool we have allowed patients to identify unmet needs. Often the highlighted needs were not issues we would have explored previously as routine. The tool has been useful in initiating conversation around emotional issues. Another important outcome has been prompting onward referrals.

The use of this tool has been successful in assessing unmet needs in a MND clinic.

The ALS approach provides an empowering, safe environment for setting stretch goals and achieving sustainable change. Ongoing improvement may require a longer period of facilitated support. The partnership of Hospice and University proved effective for developing trust for issue sharing and exploration.

Increase awareness and use of palliative care services for minority communities. Increase conversations around death, dying and bereavement. Identify and work with compassionate communities to support patients and families in the community through partnership working with clinicians. Create a forum for sharing care ideas between communities and service providers.

Compassionate communities exist in Birmingham who support their own members at end of life. They are willing to work in partnership with clinicians to support patients. A Reference group made up of community members has been set up at the Hospice. Community leaders participate in our training programme for clinicians to raise awareness of how culture and spirituality can impact on access to services.

The extent of commitment to partner communities by service providers is still to be tested. The Hospice is carrying out further work to establish whether this will support more patients to achieve their preferred place of final care.

Evaluation by Worcester University demonstrates communities willingness to engage with service providers and commissioners.

Initial evaluation of our teenage group identified that the young people appreciated being treated as equals, and the programme was adapted to extend the sessions following their feedback. We identified that getting children and young people together helped reduce the sense of isolation and helped them talk and learn about the grief process. The hospices have also agreed to extend bereavement support to other family members.

A third group has just been completed and a fourth planned. We have also begun researching the needs of very young bereaved children aged 2–5 years highlighting the needs of this age group and the lack of awareness and training within nurseries. A website is to be established.

The DVD aims to:

The DVD includes the views, ideas and hopes of people with a learning disability, and other people involved in their lives. The project team devised games and exercises focused on "Things to do before you die" and "Things you want to be remembered for".

Filming and editing were carried out by a community based company, and the whole team worked together to produce the final version.

People with learning disabilities responded magnificently to this opportunity to engage in discussions and voice their own wishes. It demonstrates the huge potential for such a resource to be used by people with learning disabilities on their own, or with others as a prompt for conversations.

The attempts by individuals and organisations to be "gatekeepers" and protect their clients from getting involved in this project highlighted the need for it.

This film demonstrates that people with learning disabilities can be fully involved in discussions about dying, death and bereavement. We hope it will be widely to ensure that people with learning disabilities can live well to the very end of their lives.

Achieving quality eolc across a myriad of care settings in which disparate groups of professionals work and where the culture of care is varied and inconsistent, represents an enormous challenge. In response to this challenge a new model of service has been developed to facilitate end of life care in a co-ordinated and unified way across Central and Eastern Cheshire.

The structure of this model enables sharing of best practice and innovations across professional and organisational boundaries to promote a whole systems approach. The approaches and ethos of this model are improving the experiences of patients, families and care workers with evidence that care is becoming better co-ordinated. Through this, obstacles and barriers within the patient pathway are being identified and overcome. Care sectors are encouraged to share good ideas and best practice with communication between professional groups and different organisations becoming more streamlined.

The model is led by two Macmillan eolc post holders and three co-leaders who work across care sectors. The team, within the model, engage directly with champion groups from a variety of care settings who are made up of different professionals caring for patients and families. They are inspired and developed by the model team to change and enhance their practice in ways that enable patients and families to live and die where they prefer with dignity.

CHAS aims to offer families a choice in their place of care, no matter where they live in Scotland; including the north, the islands; Orkney, Shetland and Hebrides. Scotland is 31 510 sq miles in area, it is 274 miles long and has 130 inhabited islands.

For families who live a distance from their nearest hospice the journey can be traumatic for the child or young person especially as their condition deteriorates and their care needs increase. Imagine a 10 h journey, involving a ferry crossing, that includes administering medications, gastrostomy feeds, suctioning, personal care and more. All this can make the journey impractical and intolerable for the whole family. CHAS can relieve this by offering to take the ethos and care from the hospice to their home. A key to the success of this model of care is working in partnership with the local community teams. For the team providing this service it can mean a trip by train, boat or plane and nights away from home, however the team consider it a privilege to be able to support families in this way.

CHAS is committed to providing a service to families wherever they live in Scotland no matter how remote. The families say "just to know that CHAS is there for us is amazing"

The aim of the project was initially to meet our statutory/mandatory training needs and to develop a structured and accessible blended learning approach. One key component of this was the development of online learning modules for all statutory/mandatory areas.

Research was undertaken to find the best platform for CHAS to use which would be easy to create and upload module materials, and straightforward for staff and volunteers to use. It was also important for the learning to be validated through short assessments.

Initially eight modules were developed and rolled out to all staff, including topics such as Fire Safety, Infection Control, Moving and Handling Objects and Display Screen Regulations. After initial apprehension staff quickly began to see the benefits and some even described the process as ‘addictive’! Staff began to see the possibilities for supporting other professional learning through on-line learning, and have prepared new modules.

The results of our work with online learning far surpassed our initial expectations. Staff are really engaged with the process both of completing modules and with many new ideas for topics. It has also encouraged greater use of electronic communication in CHAS. Currently there are 14 modules available to staff: topics as Lone Working and Bereavement have been added. We are also about to begin the process of rolling out statutory/mandatory modules to volunteers.

The review was carried out to include the provision of T.I.S services by all 44 children hospices in the UK. The review collected data by three principal means: an electronic survey questionnaire, telephone interviews and focus groups.

The review identified some significant gaps in the provision of T.I.S services but also identified a great deal of good practice to incorporate into policy and guidance that can inform the development of locally appropriate provision. The findings stress the need for language and communication support provision to be an integral tool when conveying information between staff and families.

The findings describe significant barriers that deter access to services as well as compromise the quality of care and support provided to families using services. The recommendations seek to address the challenges by enabling children's hospices to review their existing policy and provision and develop a range of mechanisms that will provide localised support to a diverse range of families.

The purpose of the project is to:

Volunteer hours may be collected in many different ways depending on the way volunteering is structured. Hours are calculated on a monthly basis and recorded on a spreadsheet. Staff equivalent roles and hourly rates are then listed for each volunteer role. These are then multiplied by the number of volunteer hours and a percentage added for on costs. Once the total has been calculated the return on investment can be calculated.

One hospice's experience Volunteer value in CHAS is calculated and reported on an annual basis. In the year 2009–2010, 900 volunteers donated 83,100 h, with an economic value of £1.25 m. The return on investment was 7:1. The information is disseminated in many ways and is used for many purposes, including as part of the charity's annual report.

In this time of challenging and uncertain economic circumstances, measuring the value of volunteer time has many benefits to hospices and can be used in many ways. These include monitoring and demonstrating the cost effectiveness of services and influencing funders.

The aim of the project was to provide an alternative choice to traditional bereavement support by offering a therapy group that nobody else could join once the programme had started. It offered a safe sharing environment to enable people to understand and explore their grief. Bereaved carers known to the specialist palliative care team (SPCT) were invited to attend over 5 months, of the 142 people contacted, 62 responded and 27 of those expressed a wish to take part. 2 groups were set up and the carers attended for 7 sessions. Feedback was collected at the end of each session.

It was found that a time and number limited CBTG appears to be an effective way of working with bereaved people. The fall out rate from the programme was low and the evaluations showed that it had met the groups' expectations. One of the most important aspects was their sharing of experiences, as this assisted in normalising the grief process and enabled them to develop coping strategies and increase their resilience which reduced dependency on other professionals. Using expressive arts was particularly effective in that it facilitated access to deeper emotions in an unthreatening way with requests for further sessions. This new innovative project provided an inclusive equitable service across the region for families known to the SPCT. The closed group provides a different type of environment enabling deeper therapeutic work to take place compared to traditional bereavement support groups. It is user led and cost effective and its template can be replicated and adapted to suit other services needs.

In response to this, a systematic review was conducted which examined to what extent are the medical treatment wishes laid out in preference tools respected? Out of approximately 3500 references located, eight were included in the final systematic review.

All studies were from the USA and, as a body of evidence, indicated that the tools worked at ensuring patients' documented wishes were acted upon. These studies also demonstrated that the success of preference tools is as much about the context of care, sophistication of care models and buy-in from staff as the tool itself. Crucially, in all studies, patients' treatment wishes are recorded in an appropriate system. Implications for practice Based on the findings of the systematic review I will make suggestions for changes in the organisation of Advance Decisions in the UK and where further research is needed. Given proposed changes to the organisation of the NHS, and the increasing emphasis on patients being able to die in the place of their choice, systematic and cultural changes are needed to ensure wishes expressed in Advance Decisions can be respected whether a patient dies in hospice, at home, or in a hospital and how they are managed between settings.

To ascertain whether a CP1 Placement in an in-patient palliative care unit: Has a role in medical student education preparing ‘Tomorrows Doctors’

as a scholar/scientist, practitioner and professional. Is an appropriate environment for junior medical students. Is acceptable to our patients.

A questionnaire is given to each medical student on CP1 placement in Palliative Medicine during 2011 to complete at the end of their week. In addition we are giving patients who have been seen by a medical student a short questionnaire to ascertain their views on medical student interactions.

In a previous departmental audit and in other research, patients have reported favourably about their experience of being involved with medical student teaching. We hope that analysis of the 2011 responses will add to the evidence that the hospice setting is an important learning opportunity for students but also a positive experience for patients. A more detailed evaluation of results will be presented.

The community team were concerned about delays in responding to patients referred to their service. Patients are referred to a specialist service for specialist advice for complex symptom management / psychological support. Any delay in responding to the referral impedes the management of their symptoms or support and can lead to further distress.

Triage was introduced as a 6 month pilot in an attempt to improve the response time in line with local and national initiatives. An audit was then carried out using questionnaires to district nurses, GPs, and the CPCT with the aim of providing the team with evidence of the feasibility of triage as a long term working commitment.

Triage has provided the team with a workable practice which enables prompt response to both the patient and the referrer. Due to the process of triage the team has also ensured an accurate recording of the number of referrals, as well as a uniformed and structured response. Triage also allows for; The gathering of detailed information, by a CNS, on day of referral and provides an outcome for speed of response. Same day assessment and treatment of symptoms and if necessary referral to other disciplines, Education for referrers, patients and carers about symptom control, Provides patients and carers with telephone numbers straight away for them to access our service and 24 h helpline.

Triage is a team initiative which has directly benefited patients and carers; opened communication with referrers; ensured we achieve local and national standards; standardised the referral process; improved data collection; provided a tool for audit.

Having identified the problem, discussions were had with patients from the respite list as to what equipment they used at home, and what was most important to them. A number of different staff groups then worked together to obtain a range of non-standard nurse call switches and an environmental control system to facilitate control of electrical appliances.

Patients with impaired upper limb function can now use the nurse call system to summon assistance when they need it. Patients now also have control over lighting, TV, radio and a fan.

These improvements have enabled patients with impaired upper limb function to feel more empowered during their respite admissions. The non-standard nurse call switches have allowed patients to summon assistance when they need it. Therefore patient's privacy and dignity are greater and demands on nursing staff time are reduced. "When I wake up in the night, I can now turn on the light instead of being stuck in the dark" Gordon (patient). It has been both a positive and rewarding experience for staff to be able to use technology to promote patient independence and quality of life.

Development of a comprehensive family of audit tools to measure quality of hospice care in the community against validated standards.

A NATG subgroup was formed drawing on expertise from different community areas, in particular Community Nurse Specialist and Hospice at Home. To inform the development and structure of the tools, it critically reviewed: statutory and regulatory requirements, relevant national standards and guidelines, range and scope of community services provided by hospices. Because of the size and complexity of the project, topics were grouped to reflect different community areas, each requiring specialist input and ensuring multi professional collaboration.

Five audit tools under development are: Referral Management, Initial Assessment, Follow-up Assessment, Assessment Domains, Cooperation with Other Providers. Further tools are planned to include: Advance Care Planning, Communication, Confidentiality, Education and Training, Rapid Response, Documentation and Recording.

The diversity of community service provision and the different work patterns across hospices presented a number of challenges in ensuring that the tools under development are fit for purpose and meet local needs.

Following testing and critical review, the first tool will be available by the end of 2011 and will be published on Help the Hospices website as a free download. Other tools will follow during 2012.

To examine the end of life care needs of people with dementia; to identify gaps in the provision of care and to develop a hospice strategy.

A literature search identified issues in the care of people dying with dementia. Consultation with providers of care confirmed these findings. A focus group of bereaved carers provided insight into the experience of caring for someone dying of dementia. Models of care from other hospices were explored to generate ideas. Hospice teams were encouraged to share experience of caring for these patients.

Emerging issues were the risks associated with hospital admission; symptom burden; the emotional impact of decision making on families and uncertainty about the role of SPC. Effective communication; advance care planning; symptom assessment; recognition of dying and support for families were identified as essential for improving care.

A hospice strategy was developed, based on different levels of SPC. Most people with dementia need generalist palliative care, with SPC providing education and consultancy for professional carers. A practice development role with partnership working between the hospice and care providers is being explored. The hospice should also create a dementia friendly environment for people requiring its services.

The increasing incidence of dementia and the inadequacy of palliative care provision challenges SPC to find innovative approaches to improve the experience of dying. This project makes a start in meeting the challenge.

The aim of this Fund is to enable the hospice to dampen the effect of annual fluctuations in the flow of legacy income and forms part of the hospice reserves. The Fund is used at the discretion of the Trustees for revenue or capital expenditure in future years when a shortfall in income from other sources occurs.

The annual budget for legacy income is calculated on the basis of the average received in the previous 5 years. Management accounts and reporting reflect this figure while the Financial Accounts, in line with SORP, reflect the actual amount receivable in the SOFA. A Balance Sheet transfer between Funds reflects the surplus/deficit legacy monies receivable compared to budget.

The level of legacies received over the last 5 years has enabled the Hospice to budget and plan with confidence in the knowledge that there are adequate reserve resources available to cover any shortfall in other sources of income.

During an unprecedented period of economic turbulence, the hospice has continued to manage its finances with a view to long term viability, while retaining the flexibility to take advantage of opportunities for new service development which meets its core objectives.

The value of having the Legacy Equalisation Fund is particularly apparent in current financial circumstances as it will allow the hospice to continue to support capital and revenue service development projects in a period when traditional sources of finance may not be available due to likely cuts in government expenditure and the general economic climate.

of the first full surveys are now available and there are plans to benchmark with other hospices in future. This will enable us to use the results to continue to work towards improving the quality of the services we deliver.

To explore the perspectives and experience of palliative care service users and carers of respite care.

The participants were hospice service users and carers who had experienced respite care in that hospice and other settings. The approach was qualitative and data collection was carried out by unstructured informal interview and analysed in accordance with Grounded Theory strategies.

Analysis of the data showed that there is nothing straightforward about respite care and the concepts of need and acceptance, vulnerability and resilience, risk and enablement, loss and gain all emerged.

This study confirmed that respite care suffers from a problem with definition and is often talked about in a trite way which doesn't reflect the complexity of the caring relationship it is supposed to be sustaining.

Respite care is valued by palliative care service users and carers. The articulation of respite care needs and the insights gained in this study have the potential to influence practice and provide a platform for service development and improvement.

To complete the three foundation modules, followed by eight process modules.

Photographs were taken prior to the de-cluttering/re-organisation on the ward. This resulted in time saving as all the equipment for a procedure is kept in the same place, that is, catheterisation – the dressing pack, catheter, catheter bag, stand etc are now located in the same place.

Knowing how you are doing – this provides monthly outcome measures for key performance indicators.

Meal Wastage Action was taken to reduce meal wastage which resulted in significant cost savings.

Stock/Finance Stock is now kept to a minimum, that is, dressings, drug, etc, making it easier to ascertain exactly how much stock the ward is holding, this has also resulted in a tidier store room.

Morning handovers were held in the staff room taking up to an hour. The change introduced (with a huge amount of resistance) was to hold the handover in the nurses' office to ensure visibility and swiftness. The intention from my perspective was to speed up and reduce the time/cost of this handover. The handover now takes approx. 15 min.

Overall, the Productive Ward initiative has proved successful with positive outcomes.

Feedback from evaluation shows carers felt supported, gained motivation and benefitted from useful information.

From pilot session:-

From 2 sessions:-

Informal comments were positive. several would like an avenue to continue to meet after group has finished.

With user involvement we have developed a support service to carers with a focus and structure. This supports and enables carers to care for themselves while caring for others.

The purpose of this exciting project is to enable students and their teachers to talk openly about dying in a way that dispels some of the euphemisms, myths and fear associated with death and bereavement and to promote the recognition of death as a natural part of living.

The theatre company has agreed to create, write and perform a multimedia drama using video and live performance as an integral part of a half-day interactive workshop for schools on death and bereavement. It is aimed at Key Stage 4 students, and in addition to relevant lesson plans, schools will be supplied with information packs for teachers, students and parents. Schools will be required to have some counselling support available for students.

The hospice undertook the original groundwork for the project and continues to be closely involved as advisor on the content of the drama, and with the schools liaison work.

A light-hearted sketch has been created which uses humour to address this serious issue; it will be performed by about eight young student actors. The first six schools who expressed an interest in the project have been selected to take part in the initial phase. Funds for the project will be raised by schools.

The project includes plans to record the theatre piece on DVD for use in other schools and general release to a national body such as Help the Hospices.

A proforma was completed upon the death of every patient referred to the service in 2009–10. Information captured included preferred and actual place of death, aspects surrounding end-of-life care including any triggers for admission.

788 patients known to the hospice died, the median number of days patients were known was 83 and mean 160.

7% of deaths were from non-malignant disease.

55% of patients specified their preferred place of death was their current place of living (home, residential or nursing home and prison). 67% of patients who expressed this preference achieved this. 14% of patients identified they would prefer to be admitted as an inpatient to the hospice for end-of-life care, 81% achieved this. New conditions and lack of social support were significant triggers for admission.

The proportion of patients achieving their preferences for home and inpatient hospice with this community service compares favourably with results reported. Achieving preferences is a reflection of healthy community services as a whole. Despite the more unpredictable time course of non-malignant illnesses, the majority of these patients were able to achieve their preferences for end-of-life care.

This audit provided basic information for discussion with our commissioners. Breakdown by primary care team and cause of admission enabled the service to consider targets for future education and activity by looking at triggers for acute admissions as starting points to change health behaviour and target social care.

Inspired by competency based training packages available locally, a clinical skills competency framework was devised as a practice based learning and assessment process. The clinical skills competency framework was developed as a single document that would serve as a record of competence and training for the organisation and the individual, a template for assessment of competence and also form the basis of a professional portfolio of clinical skills for the healthcare assistant.

A focus group was formed in order to compile a standardised skill list for healthcare assistants within the organisation. Competencies were compiled, alongside evidence based training packages, by registered nurses with particular skill, experience or interest in the relevant area of care, thus acting as a development exercise for the nurses as well.

The collation and implementation of this training package has been the catalyst for a cultural shift within the organisation, towards integration of practice focused teaching and assessing into all aspects of clinical work.

We aimed to recruit befriending volunteers with a developed skills set, to ensure flexibility and enhance patient experience. We aimed to set up systems to recruit, train, support, and enable volunteers to work safely.

Semi-structured interviews with patients and staff revealed a demand for volunteers in a befriending role. The appointment of a Care Team member to act as a link between the care team and volunteers was essential as previous attempts to introduce volunteers to care areas were unsuccessful. Volunteer roles were widely advertised and client centred interviews enabled us to select the right personalities and understand each applicant's skills. Volunteers are required to attend 26 h of training including familiarisation with the hospice before commencement.

The skill set and diversity of volunteers has added greatly to hospice life. Volunteers skills include massage, hairdressers, musicians, doctors, actors, and students thus expanding the range of services we can offer to guests. Committed volunteers may be offered the opportunity to undertake further training and fulfil an ‘Advanced Volunteer’ role.

The project has experienced challenges in ensuring that all staff embrace the benefits of care team volunteers. Introducing ‘Managing Volunteers’ training for staff helped to address this. Future plans include extended training and setting more rigorous induction to encourage only the most committed volunteers.

With stringent selection, training and supervision care team volunteers can significantly enhance patient experience through normalisation and enhanced activities, an additional benefit has been the embedding of the hospice in our local community.

Retrospective review of case notes for all children referred from a large tertiary level UK PICU to Children's Hospices over a 5-year period. Information was collected both from PICU and from the two hospices involved.

A total of 12 children were transferred, with referrals increasing over time. 2/3 of the children were aged 2–8 years, and the mean stay on PICU prior to transfer was 13 days. The average time from initial referral to transfer was 4 days. Discussions about limitation of treatment occurred after an average of 9 days of ventilation, with 2/3 of families having had prior contact with the palliative care team involved. 1/3 the patients were still on invasive ventilation at the time of transfer, and all of those were escorted by a PICU Consultant, of these, 3/4 were extubated within 30 min of arrival at the hospice. Overall, eight children died following transfer, but four children (1/3) survived for > 2 weeks.

It was pleasing to confirm an increase in joint working between PICU and Children's Hospices. Consistent with other studies, we have shown that 1/3 of children transferred for end of life care, initially survive. Information gained from reviewing these cases contributed to setting up a working party to produce a care pathway to support extubation within a children's palliative care framework, which is due to be published this year.

A 6 month secondment reviewed current practice and planned future work. The priority was to ensure that all ages and abilities were included in participation.

Current practice was compared with other hospices and assessed using the Children's Hospices UK User Participation Toolkit. Writing KPIs clarified goals. The patient group was segmented by age and ability to ensure that appropriate methods of engagement were used. Patients and parents were surveyed using questionnaire or semi-structured interview.

A range of options were presented by parents and patients including the use of social media, and online communication. Focus groups are successful regarding specific issues only, but less useful to evaluate ongoing experience. Recording the anecdotal, and engaging care staff in doing so, adds richness to the more formal methods of engagement.

The ability to offer feedback to a neutral person (eg, a volunteer) encourages participation. Use of communication resources designed for specific groups, such as those with learning disabilities promotes engagement. For some this may be the only time they have been asked their opinion and they may need to be empowered. However it is important to manage expectations, it is not always possible to act upon feedback gathered.

Meaningful user engagement with this diverse client group requires creative methods to enable all to participate. Being able to draw on the broad skills of the care team and dedicated staff time is required to ensure that user views are listened to. How the organisation responds to the users' views and the rationale must be feedback to the user. Further work should extend to other service users, for example, volunteers and fundraisers.

This practice has been replicated in over 40 subsequent children's hospices, but minimal research has evaluated the impact of this aspect of support on families. Thus a service is being offered which has not been validated as beneficial. Policies guiding this aspect of service delivery are based on practice experience and anecdotal evidence with practices differing across the country.

A literature review was carried out to identify what is known about the impact on bereavement outcomes for parents who have prolonged access to their child's body beyond the immediate hours following death. Related literature looking at the impact of viewing stillborn babies or adult bodies following unexpected death and post organ donation was included.

While most literature suggested unspecified benefits to bereaved relatives from accessing dead bodies, there was one notable exception in stillbirth studies which indicated higher levels of anxiety and depression in mothers who had held their stillborn baby. Few studies measured the impact of access to the body on bereavement outcomes.

There is urgent need for research to identify the impact of this service on the bereavement outcome of parents, looking at both benefits and potential risks. This research should inform service development in terms of governance within children's hospices. Furthermore, new evidence will be added to the understanding of factors influencing bereavement outcomes for parents.

Case studies are a powerful example of those experiences which contribute to hospice care intelligence. Providing a practical approach to learning and facilitating networking, they encourage service development and the sharing of new ideas and innovation. We are developing a case study resource bank to share experiences and practical project learning with hospice colleagues.

This ongoing project is creating a new resource by collating existing and researching new case study materials for various audiences. The value and impact of access to this fledgling case study resource is indicated by the example of work done by the national fundraising support team in gathering case studies on income generation to share on the members' area of our website. A hospice adopted a new community engagement idea outlined in a case study from this resource. The activity raised significant additional income for the hospice and has now been incorporated into their annual income generation programme.

To help raise the profile of hospice care and inspire innovation, the project team invite hospice and palliative care colleagues to contact us with activity updates and project news so that, together, we can more effectively share information on emerging work and ideas in hospice care delivery and development.

To facilitate a more collaborative approach to EOLC and increasing insight/empathy into the work of other professionals working in end of life care.

41/2 days and 1 full day for course evaluation and project presentation

Day 1: Introduction to the programme/Audit/Research/Evaluation

Day 2: Multi professional

Day 3: Change Management

Day 4: Project work

Day 5: Advance Care Planning and project presentations.

16 participants attended from learning disabilities, district nursing, palliative care and mental health providers.

Pre and post course questionnaires showed a confidence increase in use of audit, working across boundaries and team dynamics. The course was highly evaluated. Project areas: manual handling training programme for families/informal carers, design, end of life pathway for learning disabilities, research and review of the key worker programme, design of an effective and standardised document to communicate advance care plan wishes, re-launch of the Liverpool Care Pathway.

EOLQM brought together staff from a variety of disciples and settings enabling them to discover and work together on projects to benefit patients at the end of life. By focussing on measuring and evaluating what we do across boundaries, it enabled participants to start to influence strategy in their own work setting.

EOLC is not just concerned with symptom control and communication skills. It also needs to be measured and evaluated and those working at the coal face have their part to play in this – not only through providing data but also designing how and what data should be captured.

To review the development of the Living With Grief programme. Particular attention is paid to how the programme has adapted in response to both feedback from the participants and the facilitators' experience.

As a result of this project review we plan to continue offering Living With Grief as a regular feature of the Highland Hospice Bereavement Service. The findings and recommendations from this review will be of interest to other hospices involved in developing and/or reviewing group support provision in bereavement services.

To increase the communication skills and confidence of fundraising staff in the community and public setting.

A 1/2 day interactive workshop using videoed role play with a Connected actor, facilitator and communication skills trainer. The role play was based upon scenarios provided by the fundraisers prior to the workshop. They completed a pre and post workshop confidence questionnaire and a follow-up one 3 months later.

11 fundraising staff attended.

Scenarios revolved around distressed relatives (expected and unexpected), and questions about care and dying in the context of fundraising for the hospice. Pre and post course questionnaires showed an increase in confidence in challenging conversations. The workshop was highly evaluated.

Fundraising staff have similar communication training motivation as clinical staff. The workshop was a worthwhile education event, albeit seeming too short – in the future it would be beneficial to mix more non-clinical staff to give a wider breadth of discussion and experience – this is planned for later in 2011.

To improve the end of life experience of patients and carers (including advance care planning) and reduce inappropriate hospital admissions.

An education programme using the specifically designed East of England Care Home education programme, ELCA modules and mentor support. Aim is to deliver over 2 years to 1800 care home staff and 5000 workforce B staff. Activity and impact is measured using a combination of benchmarking tools, patient notes audit, confidence questionnaires and educational activity.

Pre and post course questionnaires showed a confidence increase in end of life care. Activity measurement showed an increase in accessing other education sessions as well as in house end of life care policies and procedures (eg, bereavement policies). Data referring to inappropriate hospital admissions will be shown.

The programme content and measurement was debated and designed through a combination of palliative care educators, clinicians, commissioners, lead nurses and EOE End of Life lead. This combined approach although challenging in terms of coordination enabled an approach to education that could then be measured across a much bigger geographical region.

It is challenging to design education programmes across settings and borders – but it is worthwhile as it provides a systematic approach to delivery and measurement. Using a blended education approach (face to face facilitation/e learning) enables learning to be work based relevant and centred.

To assess the clinical benefits of ultrasound scanning within our hospice. To aid clinical diagnosis, enhance experience and improve outcomes.

A retrospective case note study of all ultrasound procedures carried out within the inpatient unit and day hospice at St Francis. The clinical indication for each scan is noted. Scan findings and the clinical outcome is noted.

Patients were scanned for the following clinical indications:

Ascites scan assessment

Positive ascites scan= 7

Negative ascites scan= 11

Number of resulting paracentesis= 7

Bladder scan = 8

Abnormal finding noted= 2

Normal bladder noted= 6

Complications= 0

Bedside scans prevent distressing transfer to hospital and unnecessary procedures when time is short. Patients feel this imaging is neither intrusive nor distressing. Future developments include video linking for instant radiological opinion, a new probe to assess for deep vein thrombosis and scans at home.

We have limitations with our brief training and have therefore developed links with the radiology team for feedback and support. Bedside ultrasounds are non-invasive and well tolerated, aiding diagnosis, safety and outcomes for patients with suspected ascites or bladder problems.

To assess the extent of irrelevant prescriptions in a cohort of patients admitted to a hospice for terminal care.

To analyse the annual cost of irrelevant prescribing and drugs for destruction after a patients death in a UK inpatient 12 bedded hospice.

A retrospective survey of:

Expected outcomes:

Prescribing is an art, and medicines are harmful to patients if not relevant. Lack of continuity in primary care and infrequent review of dying patients may lead to prescribing of inappropriate and costly drugs. This a burden to the patient and to the NHS, with large amounts of medication being destroyed after death.

The study is in progress – when finalised, a total cost of destroyed drugs in one UK hospice will indicate a massive national problem.

Suggestions will be made as to how this cost burden could be reduced, underpinned by more appropriate prescribing when time is short.

The psychological contract is a cognitive perceptual model, that is, the contract is in the minds of the employees, and consists of the reciprocated obligations, expectations and contributions that exist between the employer and employee.

The study involved in-depth interviews following a modified constructivist grounded theory approach, using the model proposed by Charmaz (2006). Using a purposeful sample, 10 nurses from four hospices across North Wales and the North West participated in the study.

Four main categories emerged within this study: type of psychological contract, how the contracts are formed, the contents and the breaches. The Psychological contracts held by hospice nurses appear to be complex, and analysis found potential multidimensional, multi-level and multi-agent contracting. The contents contained generic items, that is, items that may be seen with any employee in any organisation, however, there were idiosyncratic elements, these included detail of care, relieving distressing symptoms, recognising individual employees in the workplace, quality of care, time to care, and acceptance of reduced terms and conditions. Some of the more serious breaches/violations perceived by the nurses included: lack of access to education, inequitable treatment among staff, and some nurses felt undervalued with very little recognition of their contribution. Hospices should take these findings into account when considering the employer–employee relationship; failure to do so may lead to negative consequences for the organisation, for example reduced loyalty to the organisation, a desire to leave or a negative changes in the attitude or behaviour of staff.

To keep decision making as close to the patient's situation as possible in order to deliver a fast, flexible and appropriate response to rapidly changing needs and situations.

To create a service that delivers not just personal care but which uses a creative approach to supporting people who wish to remain at home at the end of their lives.

Developing the assessment and decision making skills of the Healthcare Assistants who deliver the care. This empowers them to assess, plan, deliver and evaluate patient's care needs directly.

Flexible approach to needs assessment looking at all aspects of patient's, and their families', requirements. Not just focusing on personal care of the patient but what the whole family situation requires in order for the person to remain at home. For example, house work, shopping, meal preparation, etc.

Utilising the Hospice volunteer base to meet needs that cannot be delivered by the Heath Care Assistants. For example, garden maintenance and simple household maintenance.

Project will be evaluated through the use of families and carer's satisfaction surveys and audit of the number of patient's who achieve their preferred place of death.

To present an audit of 150 hospice case notes to show the documentation of patients' preferred place of death over a 2 year period.

As phase one of a PhD research study, case notes of deceased patients were accessed from January 2008 (n=50); January 2009 (n=50) and January 2010 (n=50) during September – November 2010. Data collected included actual place of death, whether preferred place of death was documented, whether preferences were achieved, whether patients had conversations about end of life care options; whether wishes were reviewed and which professionals recorded information. The 2 year time frame represented a range of experiences within the hospice context. Descriptive statistics were used for analysis.

Results illustrated that place of death was varied; that preferred place of death was recorded in only 18.7% of cases and of this very small number whose wishes were documented, the majority (89.3%) died in their chosen location. Only 10.6% of the sample recorded conversations about preferences, and reviews were infrequent (21%) with few changes of preference.

This research demonstrates that identification, documentation and review of preferred place of death was achieved for only a small percentage of patients of this hospice during 2008–2010. This prompts further research questions around why this is so.

A Cooperative Participative Inquiry (CPI) model was used. Heron (1996) and Reason (2001) argue that CPI as a science of the person puts the emphasis on ‘first person’ research and thus locates the participant at the heart of the research inquiry.

Drop-in users volunteered to become co research participants in the research. Ethical approval was sought through the hospice research committee. Four phases were identified-agreeing the area of activity, engagement in the actions agreed, observation and recording of process and outcome, immersion and engagement of experience and finally re-assemblage and discussion of the project in the light of the experience. Results were written up, discussed and agreed.

The research has implications for person-centred care and highlights the continuing medicalisation and pathologising of grief.

Although the process is intense, the results are a testament to the group. User involvement in research in this manner ensures the ‘voice’ of users are heard, that client experiences are accepted and validated and that stigma and pathology are reduced.

The aims of the programme were to help staff recognise impending death, promote competence and confidence in symptom management and communication around death and dying. Funding was obtained for 1 year from April 2010 through end of life care monies, and existing resources pooled to supplement the proposal.

The main elements of the programme were the introduction of the Gold Standards Framework (GSF), the Liverpool Care Pathway (LCP), 3-day communication courses and specialist palliative care placements at the local hospice. There was a lead for each element. A programme of ‘bite- sized teaching sessions’ and workshops was designed and coordinated by the Practice Development Team which incorporated the ‘wants and needs’ of the unit. Teaching was adapted for all staff and multiple teaching styles used. The LCP was modified as syringe drivers were not used on the unit. 14 staff were nominated from the centre to become End of Life Care Advisors with varying levels of expertise and representation from all the wards. The advisors received priority teaching and their role was to disseminate information, support others, maintain and update resource folders on the wards.

Evaluations of every aspect of the project are showing positive increases in confidence and competence.

The project has been a catalyst for multi-disciplinary learning. The flexibility of teaching styles is innovative and potentially transferable to other settings.

We worked in partnership with our local bone and tissue bank, who have experience in using tissue from both live and deceased donors (eg, bone from patients who have a hip replacement). Our local NHS Research Ethics Committee agreed a proposal to enable patients to donate tissue after their death. Small samples are taken from up to 35 different tissues/organs and these can be used by pharmaceutical companies or research groups, with ethical approval. The project was approved by the Hospice Board of Trustees.

During end of life discussions consultants will raise the issue if appropriate. If patients wish to know more, they are given information leaflets describing various donation options, including corneal donation. Consent is taken by a consultant and a senior member of the bone bank. Patients specify which tissues/organs they are happy to have samples taken from. Unlike organ donation, relatives cannot consent on a patient's behalf after death. If the relative withdraws consent after death, then we do not proceed.

After death, the bone bank is informed and makes the arrangements. The body is moved to our hospital mortuary and samples are taken. The body is then restored in appearance and taken to an undertaker of the family's choice within 14 h.

Patients and their families have been very supportive of the project. One challenge is that the body cannot be moved, nor retrieval take place, until a death certificate has been issued. This potentially limits the project for patients who die at home.

15 healthcare workers from an acute stroke unit were purposively sampled. Semi-structured interviews were recorded, transcribed and analysed using framework analysis.

Professionals believed the following were important aspects of end of life care:

Barriers to care included resource and time limitation, competing priorities, difficulties in prognostication and communication and not knowing patients' wishes.

Important aspects of care are identified. Healthcare professionals' views led to recommendations which include:

To identify whether residents who have advanced alcohol related liver disease show any clinical symptoms or behaviours as they are approaching the end of life.

Examined the summaries of all reported deaths at St Mungo's (Jan 2009>April 2010).

Reviewed 27 sets of case notes of residents with a history of alcohol abuse and possible liver disease

Held three focus group meetings with staff

A combination of physical, psychological and behavioural symptoms occurred in residents with liver disease as they approached the end of life. Staff did not plan with residents for end of life care and palliative care interventions were minimal. Deaths were often sudden and the majority of end of life care was provided by secondary care.

Staff need training to alert them to key changes in residents' condition, so they can anticipate deterioration and death and offer earlier support. This would provide staff with opportunities to discuss preferences for care and palliative interventions with residents. Bereavement support would benefit both staff and residents particularly following a sudden death and encourage discussions on care at the end of life.

Difficult to predict when a person with liver failure is in the dying phase. However there are increasing physical, psychological and behavioural symptoms which indicate that a resident is in the advanced stages of liver disease. Earlier interventions by staff would enhance the dying experience of residents.

Contacts were made from a number of sources, starting with known children's services and an email questionnaire was sent. There was a small circulation of questions to users of the service.

There was excellent completion circulated after contact had been established by the researcher.

With the support of a grant from the DH as part of the £30 million funding, a full day meeting was held to develop a Care Plan for children in Yorkshire and Humber. Parent's views were considered in the morning and provider views in the afternoon. Examples of existing care plans were shown to participants and parents spoke about the difficulty in making decisions. The relationship between PICU and palliative care was discussed.

The following outcomes were agreed:

The development of recognisable care plans for child will help end of life care for children as well as supporting their families.

A Doctor with a background in Palliative care was appointed to undertake a review of the network and contact GP's, nursing services and hospital services throughout the region.

There was overwhelming support for a network. This should be supportive and informative as well as organising and linking with commissioning. It is recognised that some formal administrative support is necessary for the success of the network. There needs to be rotation of members to enable succession planning.

An Action plan of achievable projects has been developed.

There need to be better links with other Children's networks, including the PICU, Neonatal and neurology networks.

A strong network is an important aspect of ensuring equity of palliative care around the region. Implementing the recommendations of this report will help ensure its viability.

The aim of this study was to explore oncology nurses' understanding of spirituality, in anticipation of a greater understanding of this elusive area.

Using a qualitative cross-sectional design, inspired by a grounded theory approach, a non-probability purposive sample of seven nursing staff took part in a focus group and individual semi-structured interviews. The participants varied in age, grade and years of oncology experience.

The main findings showed the majority of nurses cited lack of time and not knowing what to say as significant barriers to giving spiritual care. The emotional impact on the nurse providing spiritual care was also identified as a burden, causing stress and feelings of inadequacy. Lack of education and training produced fear and anxiety. However, spiritual care was seen as a collective responsibility. The nurses wished to raise spiritual awareness and to deepen their own awareness in this important area.

Results suggest that despite the recognition of the importance of care in this area, nurses find difficulty in providing spiritual care to patients. Recommendations arising from the study include an education programme for nurses to increase the skills and confidence in undertaking spiritual assessment and enabling them to provide spiritual care.

The aim is to investigate whether the trajectory of dying influences the experience of grief or the memories held by the bereaved of the death and prior biography of the deceased.

One to one unstructured in depth interviews have been conducted with bereaved relatives between 3 months and 2 years after the death, followed by thematic analysis of the narratives produced.

While it is possible to identify key stages in the dying trajectory as experienced by the bereaved, there is little uniformity to trajectories and key events are often not related to the medical status of the deceased.

Considerable sacrifices are often made by the bereaved in order to achieve a’good death' as defined by the deceased and there appears to be a need to integrate the trajectory of dying with the memories of the deceased and their prior biography.

There are a wide variety of experiences, with differences between the medical and the experienced trajectories of dying.

Research is ongoing, but it seems that the needs of the bereaved can be (willingly) overridden in the desire to provide an appropriate death and retain coherent memories of the deceased.

This may have future implications for the assessment of need and the provision of services and support of the bereaved both prior to and following the death.

To empower patients through:

A unique model was developed with a focus on maximising accessibility for the breathless patient. A series of stand alone modules encompass breathing control techniques, education and coping strategies to equip the patient with a set of skills to self manage their breathlessness even if they attend just once.

The results from the MYCaW outcome measure, attendance and user feedback will be collated and presented.

While managing breathlessness is well established in palliative care, there is limited evidence to support the effectiveness of these interventions. Breathing Space offers a refreshing approach to this challenging symptom within a flexible group framework. Robust evaluation will contribute to the evidence base for non-pharmacological interventions for palliative breathlessness.

Through collaboration between hospice and community professionals, Breathing Space allows for sharing of practice and expertise.

Breathing Space supports patients with advanced breathlessness to improve their wellbeing.

The project is still underway but already we have successfully brought together the kitchen and nursing staff increasing their mutual understanding. The team is developing better systems and have Lean tools to help them continuously improve. This has resulted in more consistent delivery of nutritional care to patients.

We have not yet seen the full patient benefit but by bringing together the kitchen and nursing staff makes delivering nutritional care much simpler and more effective. Frustrations caused by lack of processes for communication between kitchen and ward staff led to inefficiencies and lower patient care. These are being overcome and the whole team is now more efficient and reactive to changing patient needs and is more efficient.

A volunteer industry expert in process management first developed Lean for use in hospices and then ran the Lean projects. Lean is a widely used tool in industry and the care sector but not previously used in hospices. Staff identified problems; solutions were trialled, adjusted and implemented using Lean tools. The expert ensured projects were focused, delivering a tangible benefit in reasonable time.

Using an industry expert allowed the development of Lean for hospices and greatly speeded the implementations of solutions, helping us see processes in a fresh light. Staff trained in Lean now use their own initiative to solve problems using Lean principles.

The main aim of the project is to promote the principles of palliative care provision to a wider audience within the community. The programme is keen to encourage young people from a variety of diverse backgrounds to volunteer and to create new intergenerational links with patients and their families while enhancing a CV or improving job prospects.

A number of new volunteer roles and a Volunteer Induction Programme were developed. Young volunteers were recruited through schools, colleges and various agencies working in the community. Placements have been facilitated using established volunteers as mentors and were monitored and supported on an ongoing basis.

Patients have benefited enormously from the involvement of young people with opportunities to learn new skills from volunteers some with additional needs. The link with a younger generation has offered a forum for sharing stories and experiences.

Volunteers have been able to access places at university, gain employment and build their skill base citing their experience of palliative care in a hospice setting.

The project has been monitored throughout and evaluated on a yearly basis measuring personal outcomes and benefits to patients, staff and families. It has exceeded expectations in terms of interest in the scheme and commitment of volunteers.

Young people from a wide variety of backgrounds have made a worthwhile contribution to the quality of life of patients. They will take their experiences and spread the hospice message in the future.

On line teaching and learning is making a significant impact on education. In recent years the use of e-learning has increased rapidly, enriching the teaching and learning experiences for many, due in part to the convenient and flexible nature of this delivery option. Following a successful outcome to a business case submitted to senior management, a project was undertaken within the hospice education department to establish a VLE using ‘Moodle’. It was hoped the outcome of this initiative would have a significant impact on the costs, resources and time taken to provide mandatory training and to maximise opportunities for continuous professional development. To achieve this the project team worked with key partners from each directorate to ensure the VLE met the needs of all its users.

The pilot for the e-learning project consisted of four mandatory training sessions, Vulnerable Adults and Child Protection, Infection Control, COSHH and Fire Safety, with 10 participants for each. Guidelines were developed and training was facilitated prior to undertaking the pilot. At the end of each session participants were asked to complete an on line evaluation and on completion of the pilot project, focus groups were held to capture their thoughts and experiences.

Both challenges and rewards were part of the experience. Most of the challenges seemed to be a consequence of the lack of face-to-face interaction in the on line environment, lack of IT skills and feelings of isolation. The flexibility of e-learning offered a solution to many of the challenges inherent in providing education and training within the healthcare setting. Advantages included a learner-centric, easily accessible, cost effective and measurable means of providing staff training and educational opportunities.

The aim of the project was to develop and implement a triage system for referrals into the Northern Ireland Hospice community specialist palliative care teams. One which would create a standardised process ensuring equity for patients irrespective of location, improve access to the service leading to prompt assessment based on patient need and overall improve the referral system to increase referrer satisfaction and the quality of patient care.

The project consisted of two phases (1) a developmental phase and (2) an implementation and evaluation phase. During the developmental phase documentation design was required to capture essential information regarding patients and carers to aid identification of the patients prioity based on need. Using a triage assessment guide patients were scored using five categories- pain, symptoms, patient anxiety, psychosocial issues, and carer anxiety. A lower triage score indicated patients with less urgent needs are identified as priority three whereas a higher score indicates those patients whose needs are greater and identified as priority one.

The introduction of the triage system reduced the estimated waiting time from 1–7 to 1–5 working days. Patients identified as priority one are being assessed within two working days from triage with many being assessed within 24 h of receipt of referral in triage. Those who are identified as priority two are being assessed within three working days and the less urgent priority three patients are being assessed within five working days.

This triage system established a consistent, reproducible assessment process and provides a useful tool to improve the community teams efficiency delivering tangible benefits for patients and carers.

To provide psychological support, information and advice to Carers; to provide an opportunity to share experiences with one another; to offer Complementary Therapies.

This takes place fortnightly on a Tuesday evening. A personal invitation and information leaflet about the service is sent to every Carer of the Day Hospice patients.

Day Hospice

The service is run by two qualified nurses, two complementary therapists and a volunteer. The hospice receives a grant to fund this.

The need was identified through our patients and carers feedback via a survey conducted in 2009. We also wanted to implement this as part of what the ‘End of Life Strategy means for patients and carers (2008) to support carers.

Carers are requested to complete a questionnaire after 6 months. This has shown that the service is useful and provide valuable support to the carers.

Developing a bereavement support group for carers, currently the carer is contacted 6 weeks after bereavement to be offered counselling – we have identified ‘group’ bereavement support may be more beneficial as they have met together as carers and formed friendships, so meeting post bereavement could be further support to them.

All individuals that have made an in-memory donation in the last 3 years on our system are mailed, these people are invited to dedicate a ribbon to someone special. Once returned a ribbon is tied in the Hospice grounds, and name entered into the Ribbons book.

To gain extra publicity we ask a celebrity to tie the first ribbon to encourage supporters not known to the Hospice a chance to donate. ROR is aimed at in-memory donations but we stress that people can donate a ribbon to anyone who has added colour the their lives.

ROR is a fantastic alternative to our original event and is on a par with Light Up A Life for an in-memory event. The event captures and inspires people's imaginations, there is a wealth of opportunities for community groups to get involved and therefore makes this event a fantastic income stream for any Hospice.

The approach developed initially as an operational response to the needs of a number of Carers' Group users who were inappropriately returning to the group after the death of the person they had cared for. Team members observed that those who returned were seeking a continuing connection with the hospice and staff that had provided a safe, ‘holding’ environment. In addition, staff identified that any support group would need to be user-led, inclusive and flexible.

The evident success of this responsive model of semi-structured, facilitated open group work lent itself to other groups of varying size, and the model has been used with several initiatives, including weekly day hospice patient groups and monthly family bereavement groups, which attract 25–30 children and adults.

Evaluations by participants of all the groups indicate that this approach is well attuned to the needs of palliative care services users. A further unanticipated benefit is that the model provides the opportunity for skill sharing within the multi-disciplinary team, including salaried staff and volunteers.

This presentation, based on a rigorous service evaluation, outlines the development of the model as a response to user needs; it describes the principles on which the model has been established; and it critically appraises the strengths and weaknesses of the model through user feedback and staff reflections.

The study investigated hospice demographics, lymphoedema services including budget provision, treatments used, staffing levels and qualifications. A secondary aim explored the use of Manual Lymphatic Drainage (MLD) with the palliative population.

The study was undertaken in November and December 2010. It adopted a quantitative approach using a postal questionnaire sent to 195 adult hospices, with in-patient units, in the UK and Ireland. This represented the whole population. Data were analysed using SPSS, with open-ended questions grouped and themed.

A response rate of 65% revealed that 61.4% of respondents provided some level of lymphoedema service. Where services existed, 69.2% of hospices had staff employed solely to treat lymphoedema, 66.7% had ring-fenced budgets for lymphoedema care with 67.3% treating lymphoedema patients from outside the palliative population. Nurses and physiotherapists were the main professional groups involved in lymphoedema management.

MLD was employed as a treatment strategy for palliative patients in 75.6% of hospices. It was used holistically, often in an adapted form, with both physical and psychological benefit.

Wide geographical variations exist with a cluster of fully developed services in the Midlands. It appears that different models of care are evolving in Wales and Northern Ireland in response to recent national guidance.

There is potential inequity of service provision due to geographical variations. Further research is needed to plot the trend of hospice lymphoedema services, explore the impact of new models of care and give further consideration to the use of MLD with palliative patients.

The method adopted was to undertake a qualitative study of palliative care social work in a hospice in the south of England. Specialist palliative care social work was selected as a likely source of examples of social work practice ‘at its best.’ The main fieldwork activities undertaken were semi-structured interviews with social workers and other members of the hospice's multi-disciplinary team, followed by a final workshop session.

The study showed that social work practice in this setting was driven by an attitude of profound respect and sustained availability, which included a commitment to ‘being with’ people in circumstances of intractable suffering. Specific mechanisms were identified through which social workers used professional skills such as adaptive communication, sensitive risk management, systemic thinking and improvisation, to enable service users to identify and express their priority needs, to mobilise their own distinctive abilities and strengths, and to optimise their use of informal support networks. By making these insights accessible to the multi-disciplinary team, social workers promoted the ability of service users to function as effective co-experts within the distributed leadership dynamic of the multi-disciplinary team.

The presentation provides a detailed analysis of the processes through which social workers supported service users to discover and exercise their own capacity to be ‘leaders in our own lives’; and how this contributes a to a more practical understanding of what is involved in ‘servant and partner’ leadership.

Aims of this study were to assess the benefits of hypnotherapy in the management of anxiety in palliative care patients and to ascertain if hypnotherapy could affect other symptoms including depression and sleep disturbance.

Participants received four sessions of hypnotherapy and completed the Hospital Anxiety and Depression Scale, Edmonton Symptom Assessment Scale, Verran and Snyder-Halpern Scale, and wrist actigraphy. Out of 21 patients recruited, eleven successfully completed the study.

After the second hypnotherapy session there was a statistically significant reduction in patient-reported anxiety (p=0.0066) and symptoms (p=0.0094), but not in depression (p=0.2910) or sleep disturbance (p=0.0868). After the fourth hypnotherapy session, there was a statistically significant reduction in patient-reported anxiety (p=0.0016), depression (p=0.0466), symptoms (p=0.0329) and sleep disturbance (p=0.0081). Actigraphy did not show a statistically significant improvement in sleep quality.

Hypnotherapy intervention appears to have a more immediate impact on anxiety and symptom severity whereas the improvement in depression and sleep quality is more slowly acquired. Actigraphy is a new tool to measure the quality of sleep. Its validation is still in progress and thus the sleep indicators chosen for this study are still a subject of debate. This could explain the result inconsistency.

This study suggests that hypnotherapy can contribute to reduction in anxiety in palliative care patients with the added benefit of improving sleep and severity of psychological and physical symptoms.

With the project active for a full year, it has been formally evaluated with encouraging feedback. Volunteers state that they value working with greater autonomy and express increased role satisfaction. Carers have identified Family Friend support as contributory towards greater coping and confidence. The service's success is attributed to our ability to identify a shortfall in carer support and our faith in skilled and trained volunteers to meet it.

The hospice believes that diversifying the volunteer role and providing enhanced training and supervision has increased satisfaction for volunteers, patients and families. This information could be used by hospices concerned about managing risk in home support volunteering.

Retrospective cohort study and stakeholder evaluation during a 1 year pilot study in the North West of England. Data (demographic and service intervention) was collected on 201 service recipients. 55 Healthcare Professionals; (General Practitioners, District Nurses, Community Specialist Palliative Care Nurses and Hospital Discharge Coordinator) participated in semi-structured interviews, focus groups and electronic open end questionnaires.

In the first year, 201 received the service. 184 (92%) had cancer, 36% aged over 80 years. 57 (28%) lived alone. 181 (90%) recipients died. 73% (132) died at home (72% (120) with cancer), 6% (29) in the hospice, 12 (6.5%) care home, 1 (0.5%) in an ambulance on their way home, 7 (4%) hospital. 51 patients lived alone, 69% (35) died at home. Healthcare Professionals reported the impact of the different elements of the service (accompanied transfer home; multiprofessional (including doctors) crisis intervention team and a flexible sitting service) as being instrumental in helping patients to remain at home. The additional service supplements existing services, enables a speedier discharge home and supports carers to enable them to continue coping. It is of interest that in the second year a 73% home death rate has been maintained.

This novel bespoke service provides different elements of a Hospice at Home service, a tailor made package to meet individual and local area needs. This service appears to be having a major impact on place of death and is enabling patients to die in their place of choice

To raise awareness of the spiritual and religious needs of patients and families

To help staff feel more confident in discussing and assessing them.

To provide this education in a format which is easily accessible and available to staff.

A joint project between a cancer network and a university technology department in the Northwest of England resulted in the conversion of the interactive awareness raising course of four sessions, originally delivered face to face (on one day or as a series), into an online course based on a constructivist learning format.

The iterative process involved in the conversion, a description of the online instance and the resulting course along with the qualitative analysis of the pilot are described. The results show that the online platform allowed participants to access the course at a time to suit themselves, from anywhere which had internet access and allowed them to learn at their own pace with time for reflection.

Clearly e-learning does not suit everyone, but this project has shown that conversion of even a course reliant on group interaction is possible as long as sufficient material and activity, to meet all learning styles and preferences, is built in and the course is organised to allow small cohorts of people to form a learning community for its duration.

To see if a one day interactive course to raise awareness of spiritual and religious needs was effective in increasing staff confidence in this area of support.

A spiritual support education programme was developed, which could be rolled out across the cancer network. The course was then offered to participants who chose to attend. Each participant was asked to complete a pre and post course questionnaire and course evaluation.

159 participants attended the first 12 courses. 156 completed pre and post course questionnaires and 104 completed pre and post course confidence visual analogue scales which were compared. Many of the items suggest improvement from before the course to immediately afterwards, for example, pre course only 6% participants felt that they understood the nature of spiritual assessment ‘very well’, 36% ‘quite well’, 57% ‘a little’ or ‘not at all’. After the course 57% participants scored the answer as ‘very well’, and 40% ‘quite well’ with only 3% ‘a little’. Pre course the mean visual analogue score for confidence in assessing spiritual needs was 4.00 and afterwards 6.76 (where 0 was no confidence) and for assessing religious needs pre course 4.71 and post course 7.07.

It appears that this course was successful in raising awareness and understanding of the nature of spiritual assessment and raises the confidence of participants in assessing spirituals needs. It remains to be seen whether the improvement is maintained once the participants return to the workplace.

To provide each inpatient with an extra source of comfort and relaxation to suit their own individual taste.

Enough money was raised to buy 14 ipods and docking stations, 12 month supply of disposable headphones and a laptop for downloading the music.

An eclectic range of music of all genres was downloaded, including music composed and recorded by the patient and partner.

One auxiliary nurse volunteered to take responsibility for downloading music that had special meaning for individual patients as requested.

Comments from patients and families that have used the ipods are collected, also the types of music requested, comments- have indicated that the ipods provide a positive experience for patients and families with a wide range of musical tastes.

Staff comments were collected through an online survey.

Raising staff awareness of the benefits to patients of listening to music of their own individual choice rather than that selected by nursing staff from a central CD player, radio, piano or organ has prompted another auxiliary nurse to survey Day Therapy patients and find out what their music preferences are.

This poster describes the background to this service, comments from patients and families, and the results of the two surveys.

Staff follow the care plans of the district nurse who undertake all patient assessments. However the personal safety of the staff (lone workers) is the responsibility of the Hospice. A simple daily risk assessment to ensure continuous attention to safety was required.

A comprehensive risk assessment checklist which covers all aspects of safety and security is quickly completed by staff at each shift in the patient's home. Completed checklists are checked by the Co-ordinator after every shift with identified risks immediately addressed prior to the next staff member visiting that patient. This complements other staff safety measures: Lone Worker Policy, provision of personal tracker badges and mobile phones.

For each of the 4000 patient sits provided since the service began, a checklist has been completed. Recurring themes identified excessive smoking, threatening dogs and ‘difficult to find’ home addresses as key areas of risk. Expected risk, that is, insecure environment and difficult family dynamics, are hardly featured. A recent survey demonstrated that hospice at home staff felt robust systems were in place to minimise risks to their safety as lone workers in the community.

This poster describes the setting up of the risk assessment system, the checklist, results of the staff survey, and themes emerging from completed checklists.

The aims of the project were to introduce this cohort of patients/carers to palliative care services at a much earlier stage in their illness and to decrease levels of distress/anxiety associated with a referral. It was also to give the opportunity for patients/carers to meet others in a similar situation and to provide them with information about common problems.

Two programmes were devised, each of 10 sessions, with a different theme per session. Each programme was devised to support 10 new patients/carers, with sessions taking place in the day hospice (hence the title ‘a foot in the door’).

During the first and final sessions of each programme, patients/carers were asked to anonymously score a series of statements concerning their confidence in (and experience in accessing) care, their concerns for the future and feelings about hospice services. Results show that a positive change in all domains occurred.

This outreach project had a positive impact on MND patients/carers. The project format can be replicated by other palliative care providers.

A DVD further detailing the project is being made in order to help other palliative care providers develop similar work.

demonstrated significant barriers to accessing our services. Many were not aware of services on offer nor who could use them; and there was a real need for literature that clearly communicates the work of the hospice and the range of services it provides.

The consultation exercise resulted in a rebranding in 2009. Since then our marketing and clinical teams have worked in partnership to raise the profile of the hospice and reduce barriers to access through a range of promotional and marketing initiatives. We have produced a range of service information leaflets and clinical literature and have successfully developed networks and collaborative working relationships with colleagues in non-cancer specialities.

Some 3 years on we are beginning to see the results of our partnership working. We have achieved more by combining our marketing and clinical expertise than we could have achieved singularly. Statistics suggest that we are beginning to improve access to people not previously accessing our services well. While there is still a long way to go we can see that our joint working and enhanced information giving is raising the profile of our hospice and the services it provides, paving the way for more patients to access them.

To determine the ability of the telephone triage service to reduce patient STAS (Support Team Assessment Schedule, Higginson 1993) scores or to refer on appropriately. To compare results with the community team's ability to reduce patient STAS scores. To highlight trends in types of care provided for patients managed by the telephone triage service.

The telephone triage service uses an adapted version of the Support Team Assessment Schedule tool to assess patients. 50 randomly chosen patients were recruited, with at least one problem scoring STAS 3 or above at triage first contact telephone assessment. Analysis of STAS scores was undertaken at subsequent contacts, along with referral patterns and time lapses between contacts.

At the second telephone triage contact, the number of problems scoring STAS 3 or above had reduced by 60%. A third telephone contact reduced the number scoring STAS 3 or above even further. Outcome scores for the community team were very similar.

The very nature of palliative care means that as initial STAS scores are reduced, new and often more complex problems develop. However, results clearly demonstrate that our telephone triage service is effective in palliating symptoms. Introducing telephone triage into our service has successfully reduced our waiting lists by providing a flexible, responsive service appropriate to need. We are now able to confidently evidence the effectiveness of this service in terms of providing high quality specialist palliative care.

To provide 5 days of training to ECPs from the East of England on end of life care, including what palliative care emergencies are, what the end of life care tools are and an introduction to the drugs available in emergency boxes.

Between November 2010 and March 2011 we welcomed over 30 ECPs on five study days on end of life care. Each delegate attended the same programme and had the opportunity to discuss the most difficult aspects of attending palliative care patients.

Our initial feedback from the evaluation forms was encouraging. For many delegates, this was the first training that they had received on end of life care.

The initial feedback received and the links that we have now built with the ambulance service, are certainly encouraging. We have been given some anecdotal evidence from the local end of life care facilitator who has already seen positive results in practice.

By September, we will have further feedback from the ECPs as we plan to wait until they have had an opportunity to put what they have learned into practice before assessing how this training has influenced practice and what needs to develop further.

These are then reviewed for:

Resources are then uploaded to the identified website sections in an agreed format.

To provide a central point of communication for clinicians, working with the referring clinicians to ensure that care is prioritised and co-ordinated. To ensure patients receive the most appropriate level of care. To support patient choice at the end of life by facilitating discharge from hospital and reducing inappropriate admissions.

Introduction of clinical staff with palliative care and community nursing experience. Extended working; opening at weekends.

Access to SystmOne patient records, the palliative care template and introduction of a county-wide prioritisation tool.

The introduction of clinical staff has enabled patient need and priority to be matched to the appropriate care and has released resources and reduced unmet need.

This has supported both speedier discharge from and prevented unnecessary admission to hospital.

It has also highlighted issues with the current systems and barrier to the effective use of Continuing Healthcare.

The introduction of clincians has been a positive investment; the issues highlighted need to be addressed to further improve outcomes for patients and their families.

To enable clear, accurate and effective communication of need across organisations to support the allocation and re-allocation of available night care resources for patients at the end of life based on their clinical need.

The ‘responsive need’ tool was devised by members of the group using the work of two organisations, St Barnabas Lincolnshire Hospice and Marie Curie Cancer Care and the Gold Standards Framework prognostic indicators as a resource.

This tool has given us a shared language and supported the clinician in their decision making. It has enabled us to achieve the aim of allocating care on the basis of need and urgency.

The responsive needs tool has supported choice at end of life for patients and would be of interest to both those commissioning and providing end of life care.

The End of Life Care Education and Training Model provides a flexible approach to supporting structured learning with an opportunity for reflective practice, enhancing professional development. Within this model we can tailor individual, departmental or organisational development plans that build competent practice to enhance end of life care. The model uses Bloom's taxonomy – a classification of the different levels of learning, advancing from basic levels of knowledge and application through to higher levels of analysis and evaluation – as the central building block for all professional development. Each aspect of the model provides a variety of options to support learning, for example: study days, seminars and courses considering different elements of a single topic; taking what has been learned and applying it to practical aspects of patient care; enabling staff to develop an outline of a skill set that supports competent practice.

The intention of the model is to provide a framework for all healthcare practitioners working with people at the end of their lives to promote lifelong learning and therefore enhance patient care.

Participants viewed the overall experience of working with the hospice as positive and the service was considered to enhance care for people at the end of their lives both through direct care provided and by supporting other professionals.

Participants cited the introduction of hands-on nursing as particularly positive – enabling increased shared care between NHS providers and the hospice. Communication with and response from the hospice were generally reported to be good particularly in urgent situations although some areas for improvement were noted. Those who had worked with the previous provider, reported that they had been anxious about St Catherine's taking over the service but their anxieties had not been realised.

There was no apparent dissimilarity between the views of different professional groups and all seemed to be very willing to extend and build on opportunities for working together. There were varying on views on the role of the hospice – and of other professionals – in providing more ‘generalist’ end of life care.

Many recommendations emerged for further exploration and action and these will be highlighted in the presentation.

This presentation will highlight how the programme impacted on the teams who undertook the programme. By focusing on personality type with a reference to change we were able to explore why some people find change exhilarating while others find it overwhelming. These differences may be the cause of misunderstanding and miscommunication.

Some of the things participants fed back were:-

Attention in the presentation will be given to how the programme impacted on the teams who undertook the programme and the impact this in turn had on patient care during a time of change.

To improve end of life care in care homes in a sustainable way through the development of core competencies supported by education.

This pilot project involved hospice staff working collaboratively with four local care homes. Year one developed a competency framework within each individual home informed by focus groups. Year two analysed competencies and identified key issues for inclusion in a 5-day training programme, tailored to address these issues in the broader context of palliative care. 15 care home staff attended the course, feeding back learning in their respective homes. The impact of the course on end of life care delivery was considered. Year three incorporated the competencies into existing staff appraisal systems. Senior care home staff were trained to assess competence, promoting sustainability of the competency work.

Engaging care home staff in the development of competencies and identification of educational need is essential to ensure a tailored, relevant programme. Effective measurement of competence is achieved through appropriate assessment linked to staff appraisal. Opportunities for sharing learning throughout the process should be identified at an early stage.

Developing a competency framework demonstrates an ongoing commitment to the development of staff and ultimately care home services, when supported by a tailored package of education. Working together is fundamental to success.

To explore the factors influencing whether GPs sign the DNAR order of the LCP. To explore what helps or hinders GPs to sign DNAR orders and to propose actions facilitating completion of such orders.

Semi-structured interviews with seven GPs and four nurses were carried out between April 2008 and September 2008. Grounded theory analysis was used.

The LCP is a nurse led process in the primary care setting that was studied. Facilitatory factors for obtaining a signed DNAR order were a multiprofessional approach to the care of palliative care patients, a good working relationship between GP and district nurse, the GP and district nurse working from the same premises and district nurse confidence in commencing the LCP. Inhibitory factors were initial GP ambivalence towards the LCP, ambivalence of the district nurse to completing the LCP process, difficulties with accessing a GP to sign the DNAR order and commencing the LCP out of hours.

The study demonstrates the importance of a co-ordinated multi-professional approach to achieve a signed DNAR order of the LCP. It highlights the need for the on-going education of healthcare professionals on end of life issues.

To provide evidence of the standards of privacy and dignity afforded to patients in the wards and Day Hospice.

A review of key currents documents and an internet search of appropriate audits was undertaken to identify best practice for delivering care that provides privacy and dignity. Following discussion with clinical colleagues and with patients and carers in their respective forums, the following standards were developed.

All patients admitted to the In-Patient Unit and Day Hospice should receive care that

Questionnaires, using Likert scales, were devised for patients and different groups of staff – medical, nursing, allied health professionals, spiritual care team, catering and housekeeping teams. These were given to 30 patients and 130 members of the multi-disciplinary team.

The response rates were 91% (patients) and 78% (staff). Evaluation of the questionnaires showed that 70% of patients rated their satisfaction with privacy and dignity as "excellent" with the remaining 30% rating it "very good". For the most part, the ratings of staff and patients were in agreement and indicated achievement of the expected standard.

Despite the good results there were some areas of concern identified. These included ensuring that hand washing was available for dependent patients prior to meals, closer monitoring of visitor numbers, avoiding interruptions to staff when with patients and maintaining privacy during conversations with staff. Important discussion took place within the teams regarding issues raised in the audit.

An action plan was formulated to address the concerns and re-audit is planned for later in the year.

The model was developed following a focus group/interview study involving 96 participants, including people with LD, family carers, LD professionals and healthcare professionals (see related abstract for oral presentation). The findings were combined with the literature. A preliminary model was developed; 60 stakeholders gave feedback on this, including a wide range of family carers, professionals and academics. The preliminary model was modified following this feedback.

The poster will present the model in a visual format. The model has four components.

The model now needs to be tested in practice.

22 people with LD took part in focus groups and face-to-face interviews. All participants had experience of having a close relative/friend with cancer. The groups were co-facilitated by two co-researchers with LD; each group met four times, using a range of methodologies (including story-telling, role play and Nominal Group Technique) to extract participants' experiences and views. Data were analysed using content analysis.

The needs of people with LD who are a relative/friend of someone with cancer are often overlooked. This group does not ask for support, and therefore pro-active support is needed from cancer- and palliative care professionals as well as from LD professionals. This includes emotional support and the provision of accessible information about cancer.

Enable timely and efficient allocation of care visits to those determined as most in need

Provide a transparent audit trail of resource and service allocation for commissioners when service faced with multiple demands.

Consideration was given to the common factors known to affect patients/carers at the very end of life and developing a scoring system which aligned closely with the Gold Standards Framework Prognostic Indicator Guidance model. The tool was refined during a 6 month pilot change and as service changes ensued.

Clinical staff found the tool to work well in practice and supported clinical decision making. They found using the tool particularly useful when demand for service exceeded resource availability and enabled the clinical team and commissioners to be assured patients/carers most in need received priority.

The outcomes of the project concurred with the aims. We have found a way of prioritising our service allocation.

The concept of developing the Prioritisation Tool for Hospice at Home care was driven by needing to establish a system and process which would optimise service allocation relevant to the local population needs. Many factors influence the needs of each patient and carer scenario and these were all included in the tool. Using the tool across two collaborative providers has been positive and enhanced partnership working and service provision. Other providers may find this tool useful.

To pool expertise from across the hospice movement to develop a core range of hospice-specific audit tools that are available to all.

Initial membership comprised a small multi-professional team of hospice personnel with a specific interest in audit and quality. To establish an effective methodology, they started by developing audit tools relating to core areas of treatment and care.

As more professionals volunteered to participate, the group expanded and subgroups were formed to develop new ranges of tools. The active involvement of experts from particular fields was sought to inform and strengthen this process.

To encourage their widespread use, tools are designed to be user-friendly, and are trialled rigorously before release. Feedback from trials and subsequent usage has led to progressive improvements in design.

Representatives from 29 hospices are members of the group/subgroups, and over 50 hospices have trialled new tools. 22 audit tools have been released to date and downloads from Help the Hospices website have averaged over 400 per month.

Evolution of the group is ongoing with seven subgroups currently developing another 13 audit tools, including new families of tools for community services and children's hospices.

The commitment of a broad range of personnel from different backgrounds, supported by their local hospices, has been key to the successful evolution of the NATG.

Membership of subgroups or attendance at workshops provides excellent training opportunities.

Possible future projects include e-learning, benchmarking and validation of locally-generated tools.

The NATG has developed a highly effective model for pooling expertise to drive quality improvement by facilitating audit.

The programme has three main aims: to provide information on key ‘Quality of Life’ issues for those coping with illness; to facilitate discussion and understanding between patients and carers around these key issues; and to provide support from professionals and other group members. These aims tie in well with NICE guidance for psychosocial support, and with the NCPC's initiative "Dying Matters".

The 6-week LIP is built around themes identified from previous groups at the Hospice (eg, Families and Feelings, Intimacy and Sexuality, Lifestyle and Coping, and Planning for Future Care). Each 90-min session is run by a relevant professional, with a co-ordinator/facilitator present throughout for continuity. The theme for each session is used as a starting-point for information and discussion. What follows is a more open, free-flowing group time, where issues important to the group members are shared and reflected upon. An anonymous feedback questionnaire is sent to participants after the programme's end.

Group numbers vary from 8 to 20+, with a good mixture of patients and carers. The weekly themes certainly provide a stimulus for group discussions in-session. There is an important added effect of more conversations taking place at home, within couples and families.

Feedback has prompted some changes, but in general the programme is well-received by participants. Anecdotal evidence suggests that patients and carers have benefited from the early input of appropriate material, as this enhances their informed decision-making later on in areas such as Preferred Priorities of Care, funeral planning, etc.

To enable hospices to evidence the standard of their bereavement work using high quality audit tools.

Two audit tools were written by a collaborative group of bereavement service co-ordinators and audit professionals from different hospices. The tools fit together but look at different aspects of bereavement: the first enables audit of a bereavement service and the second audits bereavement care. It was an interesting challenge/struggle for the authors to understand these two different aspects of bereavement service provision when developing the tools.

Within current health policy the tools enable hospices to look at how they might provide evidence to address the QIPP agenda and to be commissioned for services.

In anticipation of GP commissioners looking for good value, having audit data available provides tangible evidence of the work of the bereavement service.

Although bereavement care is acknowledged within Palliative care definitions it is only recently that the Department Of Health have recognised this – publication of ‘When A Patient Dies’ and the End Of Life Care Strategy, but there are no quality markers published within initial EOLC quality markers.

The tools are referenced to all available National standards, have been piloted and reviewed assuring users of their quality. This quality has been recognised by other, non-hospice, organisations who have expressed interest in using the tools, as the key principles are transferrable.

We encourage Hospices who do not have a bereavement service, as well as those who do, to use the tools. It will enable them to demonstrate the quality of their bereavement service and may assist them in identifying gaps and plan service developments.

To introduce a sustainable model that works successfully across multi disciplinary boundaries.

To provide supervisors with training and ‘supervision of their supervision’ support groups facilitated by an external person/s.

To promote the importance of clinical supervision as a staff support mechanism from the top of the management structure down.

To assist staff to recognise the value for themselves personally and professionally of both accessing clinical supervision, AND providing it for others.

Pros; Supervisors are widely reporting enjoyment and satisfaction from their new roles, and the diversity it brings to their work, as well as the useful insights it gives to the working roles of their supervisees which may previously have been misunderstood.

Supervisees are reporting the benefits of having ‘quality time’ for reflection in their busy working schedule.

And cons; Take - up from trained nurses was slow due to inherent misunderstandings/mistrust of the purpose of supervision. There were also fears regarding the maintenance of confidentiality in a small organisation, and difficulty dividing supervisors into peer support groups avoiding conflicting professional relationships. Sustainability relies in part on the management of the systems and register of supervisors and constant encouragement and promotion regarding the role and importance of ‘supervision’ for individuals, teams and the wellbeing of our patients

Other hospices may be interested in implementing a similar model and can learn from our experience.

A multi-dimensional Needs Assessment was undertaken, drawing upon Epidemiological, Corporate and Comparative approaches to consider the need as widely as possible. This included a number of focus groups within the Charedi community.

There is a small but significant need for specialist palliative care services within the Charedi community (up to 44 new patient referrals per year), with specific areas of need identified in relation to specialist nursing and medical input, therapies rehabilitation and bereavement support. These needs would be best met by the Community Palliative Care Team to fulfil the Charedi community's preference to receive care at home.

The Charedi community have a need for greater awareness of palliative care services and support available to patients with advanced disease. Charedi care providers are receptive to engage with joint working and training opportunities offered by the Hospice.

Additionally, there is a need for Hospices to better understand core Jewish values to ensure culturally sensitive and appropriate care for Jewish patients. Attention to the great value Judaism places on life, implications for provision and withdrawal of interventions and methods of conveying information to allow for maintenance of hope is needed.

The Charedi Jewish community in Stamford Hill have an unmet need for Specialist Palliative care. The community is open to work in closer partnership with the Hospice to support Charedi patients with advanced, progressive illness.

To carry out a systematic review and design of a hospice social care service.

A focus group carried out a literature search and multidisciplinary planning sessions. A business plan was developed and put into place.

Social care was restructured around a 4 level model. The qualified social worker to social care assistant ratio was altered to reflect the need for clear assessment and delegation, in order thet the risks were addressed.

Hospice social care brings with it a high level of risk. This risk can be lessened if the appropriate structure is in place ensuring that patient's needs are at the focus of care. The 4 level model provides a structure to rebuild the service, and a clarity to ensure that the appropriate competencies, knowledge and skills are in place to deliver care safely.

The use of the 4 level model to restructure and redesign the hospice's social care service ensured a patient needs focus. The structure also allowed clear identification of the knowledge and skills needed across the health and social care workforce for safe patient assessment and care.

To use auspices of NHS Improvement to develop cross organisational integrated pathway for advanced heart failure (HF) to ensure better end of life care (EOL).

A. Retrospective audit identified 26 deceased patients known to the heart failure nurses. The majority had no EOL discussions or specialist palliative care and died in hospital. Most had multiple admissions with average length of stay of 31 days in last year of life.

B. Key stakeholders were brought together to develop a new pathway and tools which facilitated patient choice, addressed symptom management and anticipatory care planning.

C. Tools include

D. Key features of pathway

E. Re-audit revealed

Cross organisational work can develop shared pathways, tools and training which improve care for end stage HF and improve skills of HF nurses.

To do different things and to not just do the same things differently.

For hospices to prevail in the 21st century the original vision of the hospice movement needs aligning with the changes in health/social care communities. Methods were the development of strategic aims, a business plan and sharing this with managers. Time was given to understand this plan, its key messages (integration, innovation, workforce development, excellence, education and support, initiative and public involvement). Buy in was achieved.

Time was given to develop trust in the process of business planning via a newly formed management level. The question is how this is now embedded further across all staff groups.

We are on a track rather than just moving. True engagement with the public and with our users is needed. Priorities are quality in our services; to assert this when the competition approaches and to build on the trust placed in us by the local community.

To identify factors that clinicians consider when a patient is dying,

enabling implementation of the Liverpool Care Pathway.

A phenomenological study using semi-structured interviews (n = five nurses and five doctors) conducted on a hospice inpatient unit.

There was a prominent theme of anxiety about getting the timing of diagnosing dying right and how the dying patient and their families would cope if this were the case. The factors that influenced the clinician's decision to implement the LCP were: support for decision making, understanding the patient's journey and concern that the care given is appropriate. It also appears that most of the factors that help are the mirror images of those that hinder the process of deciding when the pathway should be implemented. The theme remains the same but the meaning as to whether it helps the clinician to decide if a patient is dying or not changes.

All clinicians interviewed for this study had concerns about increasing the patient's or carers' distress if LCP implementation was mistimed; there is a risk that clinicians are avoiding difficult conversations with family members and there may be a lack of understanding around the reasons for it's use. Specific communications training may help to prepare clinicians for this role.

To enable care home staff to use therapeutic touch and non-pharmacological management for end of life symptoms and aid communication with the residents in their care.

20 care homes and 23 staff were involved in the pilot. Places were free and staff were recruited at NVQ 3 level and above. The programme was delivered in two workshops, held a month apart. The first day focused on practical hand massage techniques, the theory of therapeutic touch and some guidance on how to run workshops in their own care setting. The second workshop required a case study presentation demonstrating what impact hand massage has had on EOL clients.

Participant evaluation of this ‘train the trainer’ approach demonstrated an increased confidence to provide the training to other care home staff and positive effects on the residents were also reported, in terms of reduced agitation and more engagement in communication. There were also reported benefits for relatives of the residents, as they could perform hand massage when visiting. This made them feel that they were ‘doing something’ for their loved ones.

Due to the positive outcome of the pilot programme this workshop is now offered as a regular educational programme. The next programme is already oversubscribed and there is a growing demand for the programme.

This is an innovative, volunteer-led scheme created to help people (and their families) who are coming to the end of their lives with practical everyday tasks as well as support in the last days of life.

To provide practical support to these people, this can include collecting prescriptions, taking the dog for a walk or simply providing companionship.

Hospice Neighbours will enable support earlier in diagnosis, no matter what this is. It will be more proactive way of working, relieving pressure in the earlier stages of illness which will help make later stages easier. This will ease demands on both hospice services and other care agencies.

employed so far have been to:

Some requests for someone to help with:

Walking, to help regain their confidence post chemotherapy treatment. A Hospice Neighbour now visits fortnightly to provide companionship.

Gardening, which due to illness he is no longer able to tend. A Hospice Neighbour visited regularly to help with shopping and to keep the garden tidy.

Daily tasks as cancer affected his right arm. A Hospice Neighbour visited weekly to help with cleaning and writing letters.

Early indication from the pilot areas is that the scheme has potential to make a significant difference to patients and families in local communities. As it became an integral part of hospice community service it will helped to extend choice for those who would prefer to stay at home.

The bereavement service, in its routine evaluation and consultation from our Service User advisory group, confirmed a need for greater diversity in its methods. This led to the ‘traditional’ bereavement groups being supplemented by cookery, home maintenance classes, walking and creative activity, as well as with drop-in facilities.

The new groups started successfully, with interest and satisfaction from those using it.

Agreement has been reached with other providers to explore the potential for collaboration and partnership in providing a one stop bereavement service: a joint event is now at the planning stage.

It is often more vulnerable people who find it harder to use traditional bereavement services and this project will continue to broaden those accessing it. Success also needs to be measured by evidence that people are accessing the right kind of support for themselves.

Early signs are that individual need is being appropriately met through the offer of more diverse forms of support and that potential partners are interested in exploring the benefits of collaboration.

To address this, a group of in-house staff were trained and supported to facilitate small groups of nurses and rehabilitation staff.

Externally provided training looked at:

Attendance at groups could be difficult. Some staff took more responsibility for attending; others had not previously encountered the concept in their professional lives and therefore saw it as an extra unwanted duty.

Two annual surveys were undertaken. These elicited a range of responses, from the highly committed and favourable to those who had not found it easy to incorporate this mode of learning and support into their work.

By the second survey responses were still varied but supervision was definitely now valued and there was no wish to make further changes.

The experience highlighted:

To be an organisation which genuinely listens to its people, enshrining the concept of a community of care and caring for the community of patients, families and carers.

implemented so far include:

The Service User Forum developing into the Advisory Group involved in:

A Staff Forum being set up:

Regular Staff Satisfaction Surveys:

Staff briefings:

It is now expected practice to integrate peoples' voices (opinions) into planning, delivery and evaluation of all domains of the Hospice.

The Hospice feels a better place to work – a ‘listening’ and consultative approach. Patients and bereaved relatives meeting quarterly with an independent facilitator ‘say it as it is’ – real partnership.

This paper explains how we have maximised the use of newspapers to achieve this. Success also depends on the cooperation of staff and the press.

Make sure everyone is aware of the need to access patient/family stories – staff and volunteers are walking newspapers. Explain what a good story is and flag up recent coverage - ‘have you seen our article in the Mercury’ and display it throughout the hospice. Distribute ‘have you a story’ cards for patients, visitors and staff to help break the ice.

Implement a media strategy, monitor all local press; and ensure you have a functional press office. Organise public open events, invite all media, make sure the press see all new publications and always send an invitation to visit.

Get to know your editors – understand what they want and send through weekly stories and pictures that are topical, well timed and well written. Supply a mixture of fundraising and clinical stories.

Hospice stories can help sell newspapers; the hospice has a huge following which could drive up sales.

Offer exclusives and ‘page ready’ copy and negotiate media partnerships for flagship events.

Our profile has increased significantly. More people know what we do, why we do it and want to support us.

Regular and positive newspaper coverage opens the doors to the Hospice, and supports fundraising and patient and family care.

‘Peace of mind’ and ‘putting one’s house in order' were the main drivers with a focus on accessibility for all patients and family members. It would also avoid the inconvenience and expense of an appointment at a solicitor's office.

The Surgery takes place once a month for an hour with a different solicitor each time. Day Therapy takes place at this time so people do not have the inconvenience of ‘another’ visit. Clients can either make an appointment in advance or just turn up. The solicitor sets up in our main public area for people dropping by and a room is available for private discussion. The solicitor can telephone those who are unable to travel and staff can ask questions on behalf of patients. There are usually about two or three clients each month.

The rota is set up 6 months in advance and each solicitor holds one surgery every 18 months. Each solicitor signs an agreement setting out the points of the scheme but there is no obligation by the hospice to ensure there are any clients for them to see. The solicitors also sign a Self-Declaration of Criminal Record and are made aware of our Health and Safety, Vulnerable Adults and Complaints policies. No one firm is given preference over another. The arrangements are made by our Legacy Officer – a non-clinician.

There is a leaflet for patients outlining the scheme and posters around the Hospice; most recommendations arise from the social workers and nurses.

Before deciding where to cut costs the management team undertook a mapping process for all the service activities required by patients and families. The key activities were then analysed in relation to cost.

Staff piloted two methods of activity mapping – a service blueprint and a resource activity map. The service blueprint was found to be more user friendly and facilitated cross department discussions. In addition to this the last 3 years cost and activity data was examined.

The process of mapping services highlighted how some activity could be done by different staff or even volunteers, and it encouraged cross departmental discussions rather than silo thinking. Gaps in IT systems and processes were clear.

The results showed a trend of increasing costs but not matched by increasing income. If the trend continued it was clear the organisation risked running out of cash within 4 years.

Trends in activity data showed increasing community activity and home deaths alongside increasing ward costs in decreasing hospice ward deaths.

The whole process was underpinned by a complex communications strategy externally and internally.

This evidence enabled the management team to make £500 000 of savings by closing four beds, making three redundancies, terminating fixed term contracts, freezing vacancies, all non-essential training and expenditure.

Surplus ward staff were transferred into the community team.

The hospice is now in a strong financial position and is investing in new posts in fundraising and clinical areas.

Twilight has over 19 million Facebook followers which means that we can use well targeted advertising on Facebook as a key method to sell tickets online for the event. People click on the advert, which will be displayed on their own Facebook page, to take them through to an event page where they can buy a ticket online.

Desired results for a project of this nature are clear – to sell all tickets and create an exciting fundraising event without the traditional hard hitting charity campaign attached. In the current economic climate, there is a sense – even if not scientific, that donor fatigue will set in, especially with the high profile campaigns that have been operational recently.

This kind of fundraising avoids ‘over selling’ the need to raise money for charity. Instead, it markets a hugely exciting event to a massive audience via the various social media channels available, while raising money.

TBC

To uncover dominant, marginal and missing discourses and discuss the implications of these. This research was based on the concept that language does not provide a neutral description of the world.

The analysis identified dominant medical discourses that included ‘not talking’ and defining a time called ‘end of life’. Professional involvement was seen to be crucial in all aspects of end of life care, which seemed to be in line with a government's approach to influence all life processes from pregnancy, birth and death. There were no discourses identified that related to user involvement, compassion or health promotion.

Although there was great emphasis on encouraging people to state their preferences and choices it was purely in relation to their care preferences and place of death. People were described passively and there was no mention of people being encouraged to be in control of the own conditions as there is in other long term conditions. By positioning people in this way the discourses in the EOLCS may be perpetuating the idea that those at the end of their lives are different to everyone else and need to be treated differently.

The research concludes and suggests that there are already alternatives to a medical discourse by using a health promotion model of palliative care. Dying happens to everyone and does not mean they need to be treated differently. Hospice should consider whether the EOLCS is truly the document that guides the way forward or not. The Demos report offers an alternative to the EOLCS and new challenges for hospices.

The project focused on introducing a clinical nurse specialist as the triage lead for a hospice service offering day care, inpatient and community care. Referrals had previously been managed by an administrator with clinical support.

The triage specialist led a rigorous evaluation of the referral process while supportively challenging local referral culture; funding for the triage post was secured from a Big Lottery Fund grant.

An experienced practitioner as triage lead has enabled further exploration of allocation of first assessment to skill mix within disciplines including healthcare assistants. Examination of triage identified that it was more of a first response with a telephone assessment.

The processes established has quickly become embedded in the Hospice's practice culture and remains a source of pride and comfort during periods of rising public and professional expectation of hospice services.