A Quality Improvement Project in End of Life Care in Parkinson’s Disease

By Dr Gaggandeep Singh Alg, Consultant Physician and Geriatrician, St George’s Hospital


This project was awarded runner-up .

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The national Parkinson’s Disease (PD) audit in 2017 showed the Royal Berkshire Hospital (RBH) Movement Disorders Team is non-compliant with the NG71 palliative care guidelines. In response to this a meeting was organised which was attended by the Movement Disorders Consultant, the PD nurse specialist, palliative care consultants, community geriatricians, and the community rapid response team. At the meeting it was decided that we needed to collate data to see what we are currently doing and where we can improve.

The Baseline Audit

A retrospective audit was carried out to gain baseline knowledge about how well PD sufferers who had died in hospital had been managed. The audit looked at PD patients who had died in the RBH in the year 2017. Data was collected on a proforma. 33 male and 5 female patients were identified, with an average age of 80.5 years old and average PD duration of 7 years. A significant proportion of the patients had advanced disease and 27% of them were not residing in their own homes. None of the patients had a documented advanced care plan, and only 11% had documented discussions on future care. Although 95% of the patients had a DNACPR at the time of their death, it was not clear whether this was done in the community or during their current admission. 74% of the patients were referred and seen by the hospital palliative care team, the remainder died shortly after admission and were appropriately palliated by medical teams. Only 63% of the patients were referred to the PD nurse specialists, and of those 39% were actually reviewed by the PD nurses. Only 52% had documented discussions on disease progression and 50% had documented discussions on side effects of medications.

How did we respond to this audit?

The results of the audit reinforced the idea that change had to be made to improve the end of life management of complex stage PD patients. A plan was made to do the following:

  1. An online GP survey to understand the thoughts of our GP colleagues on the current service provided for patients with complex PD. The survey also explored whether the GPs would like to be involved in developing a care pathway for advanced care planning for patients with complex stage PD. This survey has been completed and data is being collated.
  2. An Advanced Parkinson’s Disease study day to educate, support and build relationships with local GPs, care home workers, community nurses, the community palliative care team, and the community matrons. This has been planned for late December 2018.
  3. Earlier discussions on disease progression and side-effect of drugs in clinic.
  4. Identify patients living in care homes with advanced PD, and have advanced care planning discussions.
  5. Monitor deaths of patients with advanced PD both at home and at care homes.

Planned outcome of the project and future plans

We hope by the end our project we will have developed a care pathway for advanced care planning for patients with complex stage PD. We also hope to build new and stronger relationships between primary and secondary care colleagues, in order to improve the quality of care we provide our patients suffering from movement disorders.

While this project continues I have moved to St George’s Hospital in London. I plan to develop a MDT movement disorders clinic here too. Early discussions have already taken place with interested MDT members. Taking inspiration from the RBH project I have already started some advanced care planning with complex stage PD patients I have met in secondary care and hope to integrate this in to the new clinic.


I would like to thank my supervisor Dr Apurba Chatterjee. Dr Apurba Chatterjee, Dr Maha Khwaja and their team have been working tirelessly to improve the end of life care pathways for PD patients both in RBH and in the community. Thank you for all your hard work and for giving me the opportunity to join you in this journey!

More Parkinson's Academy Palliative care Projects

Movement Disorders Mortality review
By Louise Trout, Parkinson's Specialist Nurse, Torbay and South Devon NHS Foundation Trust
Advanced Care Planning
By Dr Simon Stapley, Consultant Geriatrician & Samantha Clark, Parkinson's Nurse Specialist, Hull University Teaching Hospitals NHS Trust
A Quality Improvement Project in End of Life Care in Parkinson’s Disease
By Dr Gaggandeep Singh Alg, Consultant Physician and Geriatrician, St George’s Hospital
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Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.