Tell us what is important to you about adult community-based specialist palliative care.

18 November 2021

Local people across North West London are being asked what is important to them as the NHS and its partners look to develop community-based specialist palliative care services for adults that deliver high quality care and excellent patient experience.  The review covers the London boroughs of Brent, Ealing, Hammersmith & Fulham, Harrow, Hillingdon, Hounslow, Kensington & Chelsea and Westminster.

Palliative care in general is the care and support given to individuals with advanced, progressive, and/or incurable conditions (ie. cancer, heart failure and lung disease). Our aim is to provide these individuals and their families with the best possible quality of life we can, managing pain and other symptoms in the last weeks, months or years of their lives.

By community based specialist palliative care, we are referring to settings where specialist level of palliative care is delivered that is not within a hospital or from a GP surgery. Examples include hospice beds, community specialist palliative care nursing team, hospice day and outpatient services, hospice@home (in patient’s own home).

Robyn Doran, Borough Director for Brent Integrated Care Partnership who is leading on the review for the North West London Integrated Care System, said: “We have some excellent services and committed partners in North West London and we want to build on this excellence. We do, however, have variation in quality and level of service across NW London and they don’t reach all of our residents. This cannot continue in the future.”

“We have published an Issues Paper that sets out the reasons why we are looking at community-based specialist palliative care for adults. The Issues Paper is designed to facilitate discussions between patients, families and carers, clinicians and stakeholders during a three-month engagement programme. We want people to tell us of their experiences and we want to jointly agree what high quality, safe, equitable care looks like and just as important what excellent patient experience looks like.

“We want wide reaching, robust and transparent discussion with the public and patients. We want to make sure we reach parts of our community that are not always using services at present, including some members of BAME communities, homeless people and LGBTQ+. We also want to meet with faith groups to understand the role religion and culture play in shaping how people think about death and dying and how we need to improve services to meet the needs of all communities.

“It is only when this is done that we will look at the model of care that is needed to deliver the care that we and patients and stakeholders want. And once we have agreed the model of care. we will we look at what services we need to deliver this.”

There are eight broad reasons why we need to improve the way we deliver our community-based specialist services if we are to make sure everyone receives the same level of high quality care regardless of their circumstances.

We want to:

  1. Build on the valuable learning and feedback received from previous reviews of palliative care services carried out in Brent, Hammersmith and Fulham, Kensington and Chelsea, Westminster and further engagement activity carried out in Ealing, Harrow, Hillingdon and Hounslow.
  2. Align with national policy such as the national Six Ambitions for Palliative and End of life Care[1] and the NHS triple aim of improving access, quality and sustainability. 
  3. Address the changing demographics and needs of patients.  The number of deaths within England and Wales will rise by an additional 130,000 deaths each year by 2040, and more than half of which will be people aged 85 years or older leading to increased need for community-based specialist palliative care.
  4. Tackle health inequalities and social exclusion, which act as a barrier to people receiving community-based specialist palliative care.
  5. Address variation in the quality and level of community-based specialist care that patients, families and carers receive across NW London which means not all get the support they need and are able to have their wishes supported at the end of their lives.
  6. Some of our services are fragmented, not joined-up and do not work well together - not all services having access to clinical information held electronically by other providers.  People sometimes find services hard to access, particularly across our more diverse communities, which cannot continue.
  7. Take into account the increasing financial challenge the NHS is operating under and what it means for community-based specialist palliative care.
  8. Recognise the difficulty we are having finding, recruiting and retaining a suitably qualified workforce and the knock on effect for service delivery.

We are asking local people to give their views by 5pm on Wednesday 23 February 2022.

To find out more about this important work and how to get involved visit www.nwlondonics.nhs.uk/get-involved/cspc or email nhsnwlccg.endoflife@nhs.net

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