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Inequalities in awareness and availability of bereavement services in North-East England
  1. Donna Wakefield1,
  2. Elizabeth Fleming2,
  3. Kate Howorth2,
  4. Kerry Waterfield2,
  5. Emily Kavanagh2,
  6. Hannah C Billett2,
  7. Rachel Kiltie2,
  8. Lucy Robinson2,
  9. Grace Rowley2,
  10. Jolene Brown2,
  11. Elizabeth Woods2 and
  12. Felicity Dewhurst2
  1. 1Consultant in Palliative Medicine, North Tees and Hartlepool NHS Foundation Trust, Stockton-Upon-Tees, UK
  2. 2NEPRRA (North East Palliative Registrar Research Alliance), Health Education North East, Newcastle upon Tyne, UK
  1. Correspondence to Dr Donna Wakefield, Specialist Palliative Care Team, North Tees and Hartlepool NHS Foundation Trust, Stockton-Upon-Tees TS19 8PE, UK; donna.wakefield1{at}nhs.net

Abstract

Objectives National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19.

Methods Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times.

Results All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included ‘not aware of any services locally’. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months.

Conclusions Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.

  • bereavement
  • service evaluation
  • supportive care

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Background

In 1961, Engel posed the question ‘is grief a disease?’1 This is often the starting point for debate over whether grief is within our remit as healthcare professionals.2 Even if we do not consider grief to be a disease, its consequences demand our attention as it has a significant impact on both physical and mental health, with bereaved individuals having an increased mortality rate and being more likely to present to medical services.3

Death is universal, with bereavement affecting everybody within their lifetime. Most bereaved people experience a normal grief reaction and will recover with time.4 In previous studies, friends and family were cited as the main source of support with evidence suggesting that the strength of an individual’s social network has an impact on bereavement adjustment.5 For some, grief can be persistent and complex, requiring specialist bereavement support.6

At the time of writing, we are in the midst of the COVID-19 pandemic with the total number of UK deaths due to COVID-19 reported as 43 414 (on 26 June 2020).7 It is not yet clear what impact COVID-19 will have on bereavement; however, comparisons to challenges faced in previous epidemics may be useful. In 2002, during the SARS epidemic, a loss of connectiveness8 was seen between patient and family members related to strict limitations on hospital visiting and the use of Personal Protective Equipment. Uncertainty around prognosis contributed to the bereaved feeling unprepared for their family member’s death and, in some cases, missing the opportunity to say goodbye.8 9 Isolation measures lead to individuals lacking support from their usual social network, which was associated with poor bereavement outcomes including prolonged grief.3 10

Despite National Institute for Health and Care Excellence (NICE)11 and the Department of Health12 advising equality in access to bereavement services, evidence suggests that this is provided inconsistently around the UK with many people finding a lack of support available.13 14 This is a longstanding issue, with a previous review by the Department of Health in 2010 highlighting variation in bereavement provision.5

The aim of this survey was to explore the awareness and availability of bereavement services across the North-East of England.

Method

Phase 1

To identify which services general practitioners (GPs) refer/signpost to for bereavement support.

A survey was produced through consultation with the Northern England Clinical Network and Clinical Commissioning Groups (CCGs are the organisational unit for a number of GP practices) end-of-life leads. The survey included practice locality, whether the practice had a bereavement policy, specific bereavement training and where GPs would refer/sign-post to for bereavement support. It was reviewed by a GP focus group before being sent via email to every GP practice in the North-East of England. GPs who were the assigned lead for palliative and End of Life Care were invited to complete the survey on behalf of the whole practice to avoid duplication. A reminder was sent out 4 weeks later.

Phase 2

To identify how these services are used and who can access them.

A list of services identified in phase 1 was collated. An email was sent to each, requesting details of the following: if the service provided bereavement specific support, number of referrals annually, current waiting time before initial contact and referral criteria.

The Health Research Authority decision tool confirmed that National Health Service (NHS) Research Ethics Committee review was not required.

Results

Phase 1

The survey was sent to all 392 GP practices in North-East England, with a response rate of 22% (n=85/392). As shown in table 1, 21% of practices reported that they do not refer patients to bereavement support with comments such as ‘not aware of any services locally’, ‘unsure who to refer to’ and ‘local services have been decommissioned’. While 53 practices (62%) reported referring to a total of 17 different services and sign-posting to 24 different services.

Table 1

Services which GP practices reported referring or signposting to for bereavement support

GPs were asked to identify which clinical features triggered them to refer/sign-post to bereavement support. All practices commented, with a total of 165 reasons listed, which included: prolonged bereavement 41/85 (48%), impacting on ability to function 26/85 (31%), presence of depression/anxiety 25/85 (29%), patient request 18/85 (21%), complex circumstances surrounding the death 16/85 (19%) or lacking family/friends for support 10/85 (12%).

One-third of practices routinely contacted the next of kin; 19/85 (22%) did so only if the relative was also a patient in the practice, while 38/85 (44%) indicated that bereavement contact depended on the circumstances. 37/85 (44%) of practices had a bereavement policy with 8/85 (9%) reporting that their GPs had received bereavement training.

Phase 2

The 36 services which GPs reported referring/signposting to for bereavement support were contacted with 26/36 (72%) providing further information. Of those responding 46% (n=12/26) provided bereavement specific support, with the others providing general psychological support. Hospices comprised 67% (n=8/12) of bereavement specific services. Forty per cent (n=3/8) of hospices only accepted referrals if the person had a prior connection with the hospice. The other hospices reported that they would aim to provide support for people not previously known to them if capacity permitted.

Annually the reported number of referrals received by the different services ranged from 81 to 1522. The average waiting time was 50 days (range 2 days to 4 months).

Table 1 contains further details of services identified and responses received.

Discussion

NICE has acknowledged that there is inequality in the distribution and quality of bereavement services.15 This is in keeping with studies highlighting the gap between guidelines and practice.16 This survey showed a wide variation in how GPs refer/signpost to bereavement services. There did not appear to be a clear systematic approach to referrals, with practices within the same locality referring to multiple different services. The presence, or otherwise, of practice specific bereavement policies did not appear to affect this finding.

Local hospices were the services most commonly referred to. Access to this support may be restricted to those with a pre-existing link to the hospice and it is estimated that only around 4% of the UK population die in a hospice.5 The hospice sector is under increased financial strain due to restricted fundraising during the pandemic17 ; consequently, it is even more important that alternative sources of bereavement support are considered. Furthermore, relatives of patients not known to palliative care services may not have had any assessment of bereavement support needs, as most GP practices did not routinely contact a patient’s family after a death.

Where signposting exists, it often details only limited numbers of resources, for example, the NHS online resource ‘coping with bereavement’ lists only Cruse and MIND as places to access support.18 Further information was not received from the majority of the 19 different smaller services, each of which were only mentioned by one GP practice each. Greater awareness of lesser known services could lead to better utilisation of potentially useful resources.

This study focused on the community setting and did not include bereavement support arranged directly by acute hospital trusts. The literature suggests that only around 10% of acute trusts report having a specialist bereavement centre.5 Recent rapid reviews,19 20 have highlighted the need for acute hospitals to increase the provision of palliative care and bereavement services in the context of the COVID-19 pandemic, and it is possible that the role of acute hospitals in providing bereavement support has increased.

To bridge the gap between supply and demand, it would be beneficial to raise awareness of all services available within the region. This could be achieved by the creation of a website including all services stratified into general and specialist support. A shared bereavement policy at CCG level could aid healthcare professionals in knowing where to refer/and ensure equal access to services. It is challenging to obtain a full picture through a survey and there will likely be organisations not mentioned. A pragmatic next step would be to discuss potential improvements to knowledge and accessibility of bereavement support with regional clinical networks to facilitate an appropriate shared response.

Limitations

This survey examines the issues faced in one geographical region. Although the literature suggests that there is a gap between need and provision of bereavement services nationally, further surveys would be required before we could conclude that these findings are representative of the challenges faced elsewhere in the UK.

For such a study, a validated survey with tested reliability would be the gold standard. In the absence of a validated survey, a new peer-reviewed questionnaire was constructed with guidance from regional GP end of life leads and GP focus group.

To avoid adding further pressure to services, the survey was kept short and organisations were not pursued if they did not respond.

Conclusion

This survey suggests that within the North-East of England, there is a lack of clarity as to where GPs can refer or signpost for bereavement support. Further guidance through a central resource such as a website or shared bereavement policy would be beneficial to help coordination of referrals. The results of the survey will be fed back to the regional network, with the aim of working with primary care to bridge the gap between awareness and accessibility of bereavement support.

Acknowledgments

The authors wish to thank Dr Ellie Grogan, Dr Alexa Clark, Dr Pam Coipel and Dr Kathryn Hall for their support with this study. Thank you to everyone who responded to the survey and information request.

References

Footnotes

  • Twitter @DonnaWakefield_

  • Contributors All involved in planning and executing of the study. DW led phase 1, EF led phase 2. DW and EF wrote final manuscript. Reviewed and agreed by all prior to submission.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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