Background Palliative care involvement in supporting patients with a neurodegenerative condition has increased. There are no set standards of what support palliative care services specifically should provide for these patients. There are several sources available that outline recommended areas to be addressed (Olivera, Borasioc, Caracenid, et al. Eur J Neurol. 2016; 23(1):30–8; Vincent Scott, Lisney. Multiple System Atrophy pathway. MSA Trust, 2015; PSPA. A professionals guide to progressive supranuclear palsy. 2020). Overall themes from these sources are:
Good advance care planning (ACP).
Symptom assessment and control (SC).
Home environment modification.
Access to hospice services.
Aims To benchmark our service against the above recommendations. To identify gaps and propose ways in which to fill these gaps for the future.
Methods Stage 1. Literature review and correspondence with tertiary neurology centres. Identification of assessment criteria, creation of data collection proforma and method for analysis, e.g. for SC reviewing the use of the standard Integrated Palliative care Outcome Scale (IPOS) (Murtagh, Ramsenthaler, Firth, et al. Palliat Med. 2019; 33(8):1045–1057) and assessment for symptoms using IPOS for long-term neurological conditions (LTNC) (Wilson, Hepgul, Saha, et al. Sci Rep. 2019; 9(1):4972). Stage 2. Random selection of patients’ electronic notes over previous 2 years reviewed, and results analysed.
Results Ten sets of patient notes analysed, with diagnoses; Parkinson’s disease, multiple system atrophy or progressive supranuclear palsy. Holistic teams involved per patient; range 3–10. SC; IPOS in 1 year 90%, but assessment of saliva issues or spasms only 30%. Carer needs; offered assessment 87.5%. Psychological needs assessed and supported 100%. MDT discussion; 90%. Assessment of home environment; 100%. Cognition; formal cognitive assessments done 0%, comment on cognition 70%, appropriate capacity assessments done 67%. ACP; identifying need to discuss resuscitation 100%, good ACP discussion 78%, ACP revisited in past year 67%, treatment escalation plan recently updated 40%, gastrostomy discussions 40%.
Conclusions Areas of good practice and areas for improvement identified. Suggestions being worked on include introduction of the IPOS for LTNC and cognitive assessments.
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