In 2021 we began a journey to shape the future provision of adult (18+) community-based specialist palliative care services in NW London with the publication of an Issues Paper that set out why were looking at a service that is all so important to patients, families, carers and friends at a time of their greatest need.
Our vision
"For North West London residents and their families, carers and those important to them have equal access to high quality community-based specialist palliative care (CSPC) and end-of-life care and support, that is coordinated, and which from diagnosis through to bereavement reflects their individual needs and preferences. We want to make sure service provision is sustainable and that we can continue to deliver the same level of high quality care in the future."
Scope
The scope of our review programme work is provision of community-based specialist palliative care for adults (18+years) in North West London.
It does not include review of universal or generalist palliative care services such as those provided by your GP, District Nurses or Care Home staff for example but recognises the importance of these services all working closely together to support patients’ care needs. A NW London wide review of community nursing has taken place in the past 2 years and this programme continues to work closely with the community provider collaborative who are responsible for implementing the single core offer that was agreed through this work.
Transitions for young adults it not changed by this proposed new model of care at this time. It is an ambition for the ICB to support improvement of palliative and end of life care services for children and young people in future.
Why we need to develop services - and why people feel they are important
Our ambition is to develop services that are patient-centred and provide choice where it is available. There will be a focus on tailoring services and treatment plans to meet the individual needs and preferences of each patient. It recognises that healthcare should not be a one-size-fits-all approach and that people have unique health conditions, values, and goals. Here are some key aspects of personalised care and the choices they have that will be introduced as we move forward with the model of care:
- Treating people as unique individuals
- Making decisions together
- Tailored accessible information that explains things clearly
- Providing choice where it is available
- Respect for the choices that people wish to make
- Continuity of care
- Looking at the individual as a whole
- Keeping people as well as possible, managing their condition.
What stage are we at in this work
Between September and December 2023 we worked to get to a place where we were able to publish the revised NW London model of care for community-based specialist palliative care for adults (18+). At the same time we have also looked at how we can best deliver the new model of care and this has led us to a potential shortlist of five implementation options.
This involved a lot of engagement events and conversations and we are incredibly grateful to all our patients, families and carers and wider stakeholders including our partner hospice providers, both NHS charitable and NHS, for their feedback, comments and support. We would have not got to this stage without you.
The model of care was developed over a twelve-month period by a working group of NW London residents with lived experience of palliative and end-of-life care, as well as bereavement, along with clinicians and providers. The group met over thirty times to systematically co-design the services and support the development of a new, improved model of care that we believe will meet the needs of NW London residents for the next five years and beyond.
The development of the model of care has been underpinned by extensive engagement with NW London residents and builds on previous work to understand the specialist palliative care needs of our eight boroughs.
Update on work undertaken since publication of the initial NW London model of care for community-based specialist palliative care for adults (18+)
The revised version of the model of care has been greatly strengthened because of the feedback given by residents, health professionals and a broad range of local stakeholders at engagement events and in written comments following the release of the first version of the model of care in August 2023.
Overall there was good support for the proposed new model of care. People liked that we want to increase the amount of support available in the community to help people stay in their own homes. They also liked the almost doubling of the number of beds to over 100 available to support local residents who either need the intensive support provided by a hospice inpatient bed or the less intense but also vital enhanced end-of-life care bed that will be available to those people who sadly are not able to stay in their own home. However, we did hear some valuable challenges and constructive suggestions on how we might improve the model of care and these are reflected in this revised version.
We have also published:
- A report on the engagement undertaken in September and October 2023
- A paper covering the refreshed 10-year demand projections for hospice in-patient care
- An Equalities Health Impact Assessment (EHIA) report which explores the potential impact that NW London’s proposed new model of care will have on health inequalities and the well-being of different population groups in NW London.
In November and early December 2023 we held eleven engagement events, which are all viewable on our website, with local residents where we jointly looked at all the options for how we could deliver the model of care. We have now published an options engagement outcome report which describes the process that was followed to reach the potential five shortlisted options for delivery of the model of care.
These shortlisted listed options are:
- Option 0 – do nothing, continue with current provision.
- Option 1 – some change, minimum workable solution with a focus on providing fairness of provision (minimal improvement to care in the home, Pembridge in-patient unit remains closed, 54 enhanced end-of-life care beds).
- Option 2 - some change, minimum workable solution with a focus on providing fairness of provision (minimal improvement to care in the home, Pembridge in-patient re-opens, 54 enhanced end-of-life care beds).
- Option 3 – full implementation, fully deliver model of care (substantial improvements to care in the home and other community-based specialist palliative care services, Pembridge in-patient unit remains closed, 54 enhanced end-of-life beds).
- Option 4 – full implementation, fully deliver model of care (substantial improvements to care in the home and other community-based specialist palliative care services, Pembridge in-patient unit reopens, 54 enhanced end-of-life beds).
We are now working through a detailed non-financial and financial appraisal process, and engaging with the London Clinical Senate and NHS England on their assurance processes which are part of a proposed service reconfiguration. This will take a number of months before any final decision is made on how we move forward. If it is decided that we need to consult on any potential service change is likely to take place following the London Mayoral election that will take place on 02 May 2024.
We will provide another progress update soon but please do contact us in the meantime if you have any comments or questions on the revised model of care or other publications by emailing nhsnwl.endoflife@nhs.net