Adult community-based specialist palliative care (CSPC) review

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 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 focused on community based specialist care for adults at this stage because of the fragility of those services.

In North West London we have eight community-based specialist palliative care providers providing services. These include seven hospices with inpatient units, as well as separate community specialist palliative care nursing services.

The providers deliver a wide range of services (including inpatient and community-based specialist palliative care nursing, day hospices and outpatient services) as well as some additional specialist services (including lymphedema, well-being services and complementary therapies).

Three providers – Central London Community Healthcare NHS Trust, London North West University Healthcare NHS Trust and Central and North West London NHS Foundation Trust – receive all their funding from the NHS. The other five providers are charitable hospices and receive their funding from a combination of NHS and charitable income.

• Royal Trinity Hospice is based in South London. It provides services to parts of Hammersmith & Fulham, Westminster and Kensington & Chelsea.
• St John’s Hospice is based in Westminster. It provides services to Brent,

• Hammersmith & Fulham, Westminster and Kensington & Chelsea. It is located in St John’s Wood on the St John and St Elizabeth’s Hospital site.
• Marie Curie Hospice is based in Hampstead and provides services to Brent.
• Marie Curie’s London Nursing Service provides end-of-life rapid response and nursing services to Ealing and Hounslow.
• St Luke’s Hospice is based in Harrow. It provides inpatient and other hospice services to Harrow and Brent, with their community specialist palliative care nursing team only providing cover to North Brent.

• Harlington Hospice is based in Hillingdon. It also provides the Michael Sobell hospice inpatient unit which is located at the Mount Vernon Hospital in Hillingdon. Both services serve Hillingdon.

• Meadow House Hospice is based at Ealing Hospital, and is run by London North West University Hospital Trust. It provides services to Ealing and Hounslow.

• Pembridge Palliative Care Service is in North Kensington. It provides services to Hammersmith & Fulham, Westminster, Brent (South) and Kensington & Chelsea (please note, the inpatient bed part of this service is currently suspended). It is run by Central London Community Healthcare NHS Trust.

• Harrow Community Specialist Palliative Care Team is also provided by Central London Community Healthcare NHS Trust, and provides services in Harrow only.

• The Hillingdon Community Palliative Care Team and Your Life Line Service are provided by Central and North West London NHS Foundation Trust. These services are provided in Hillingdon.

We are tremendously pleased that the proposed model of care has received the unanimous support of all the NW London hospices and NHS providers of community-based specialist palliative care services and was approved via the NW London community-based specialist palliative care steering group, which includes all charitable and NHS providers of community-based specialist palliative care services in NW London and some wider palliative and end-of-life care stakeholders.

We would also like to again thank the providers and clinicians who have engaged with us on model of care discussions, bringing their years of experience and knowledge to the steering and working groups and the public engagement events on the model.

The NHS and its partners are committed to making improvements in community-based specialist palliative care for adults within this review process, but will continue to seek to improve other areas of palliative and end-of-life care where possible in parallel.

We have received a tremendous amount of feedback which we are responding to and have taken to date. There are also some areas we are currently developing and implementing or propose to do in partnership, to address the issues raised to support improved care and support for patients, families and carers in the last phase of life.  We also detail feedback received where we do not feel able to take action, with the reason for that given,

Our aim is to continue to work collaboratively with our public, patients, clinicians and other system partners to build on this work as it is a key part of the next phase of this programme when we look to explore the model of care and service design options to meet our NW London population’s community-based specialist palliative care service’s needs.

A download of the insight report is available here.

Below are a number of questions and answers. If you would like another question answered, please email nhsnwlccg.endoflife@nhs.net

View Marie Curie question and answer on palliative and end of life care

1. Why are you engaging with us again- we’ve told you what we think before the pandemic- what have you done with that information?

We want to build on the valuable learning and feedback received from previous reviews of palliative and end-of-life care services carried out in Brent, Hammersmith and Fulham, Kensington and Chelsea, and Westminster, but the decision taken by the North West London Integrated Care System to expand the review to cover Ealing, Harrow, Hillingdon and Hounslow meant we had to engage again.

See the Palliative care services Independent review - full report Review of provision in Kensington & Chelsea, Hammersmith & Fulham and Westminster.

See the Palliative Care Services Public Engagement Report July 2020 In the boroughs of Brent, Hammersmith & Fulham, Kensington & Chelsea and Westminster.

When we talked to people about community-based specialist palliative care services previously, we heard what a crucial role the services play. The feedback confirmed that people really value their local specialist services and people with experience of these services are very positive about the care they have received.

We have also heard that services need to be made available to more people 24 hours a day, particularly that out-of-hours services (those provided between 5pm and 9am) need improving to make them more inclusive and adaptable, and to offer more choice and be more co-ordinated. People told us it is important to improve access to these services so more people receive care and are supported to die in their preferred setting, whether this is at home, in a hospice or in hospital. It is also important that people don’t have to travel too far to access services.

The feedback showed that people have different views on how we should make these improvements. We want to build on the feedback and what we have learnt from it. We also want to fully understand the role culture and religion can play in influencing the way people relate to their health, the support they want to receive and the way they experience loss and into account.

2. Why is the Pembridge still closed?

The inpatient unit at Central London Community Healthcare NHS Trust’s (CLCH) Pembridge Palliative Care Centre continues to remain suspended until further notice following its closure due to a lack of specialist palliative care consultant cover and being unable to recruit due to that national shortage of trained personnel. It takes significant consultant resource to run and oversee an inpatient unit and based on current capacity CLCH would not be able to run this safely. All other services (24/7 advice line including palliative care consultant support, community specialist palliative care nursing service, rehabilitation team support service, social work and bereavement support service, and day hospice services at the Pembridge Palliative Care Centre are unaffected and continue to operate.

When Pembridge inpatient unit was suspended in 2019 we committed to completion of the review prior to any decisions being made on the future of this unit. It is regrettable that the period of time where we have focused on Covid response and recovery has impacted on the timeline for completing this work. Whilst acknowledging the local frustrations on the lack of clarity for the future, we remain committed to do this review properly so there is a clear process and transparency on next steps.

3. Why do we have to travel further than previously for hospice care/ see a relative in hospice care time. Consideration should be given to re-opening the Pembridge inpatient service as part of the service review?

During our engagement we have heard that hospice inpatient services locally is very important, particularly for residents where the spouse, carer and family of the patient requiring hospice inpatient care is elderly or has family and work commitments and are negatively impacted by increased travelling.

This programme will be reviewing the role specialist palliative care inpatient beds play in community-based specialist palliative care provision so that we understand the level of need and capacity required across NW London using data to support this work. Discussions about the level of need and sites will happen at a later stage in the review once the new model of care has been developed.

4. Have you considered the costs and impact on families living in North Kensington and nearby?

Please see question 2.

​​​​​​5. Why haven’t you got a consultant- what have you tried?

In July 2021 prior to relaunching this North West London wide review of community – based specialist palliative care, a number of palliative medicine consultant vacancies arose across three of our palliative care providers, including Pembridge Palliative Care Service, St John’s Hospice and Imperial College Healthcare NHS Trust (ICHT). We undertook project work with these providers to review the service requirements for their consultants and how these might be met through new models of consultant service delivery for specialist palliative medicine within community, hospice and hospital domains to ensure a more resilient and sustainable workforce collaboratively. As part of this work we looked to identify if there was, two years on any other potential solutions to the Pembridge consultant workforce challenge to support safe running of the inpatient unit.

Through this work we engaged with a number of NHS Trusts and hospices, both inside and outside of North West London on their consultant models. We learnt that flexibility, rotation between care domains, career progression, being part of clinical network and organizational culture are all important in attracting and retaining consultants. It was also noted that across London and nationally there are palliative care consultant workforce vacancies and shortages, with many organisation struggling to fill and retain these posts.

Despite substantial input from all partners on this work, at that time we could not identify any collaborative solutions that did not destabilise one service to stabilise another. The outcome was that each organisations proceeds to recruit independently to the posts, as the solution would need more dynamic transformation work to address the palliative care workforce challenge, which is not just relevant  to these three organisations. This issue would therefore best be addressed within the North West London wide Community-based specialist palliative care review programme and development of a new model of care, including palliative care workforce.

6. Why can’t Imperial provide a consultant (previously asked)?

Please see question 5.

7, If you heard from us that all we want is hospice access in / near where we live will you address that?

Please see question 2.

8. The engagement presentation states nationally a majority of people are saying they want to die at home. where does this info/data comes from?

The data comes from the VOICES survey, which is available from the national office for statistics.

Note: We do recognise that choices can change at the end of life, and are not seeking to limit choice as part of this review.

The VOICES survey asks respondents if the patient had expressed a preference for where they would like to die and asked to state where this was (for instance, at home, in a hospice etc.).

Out of the 7,561 responses to this question, the majority believed the deceased had wanted to die at home (81%), 8% said they wanted to die in a hospice, 7% in a care home, 3% in hospital and 1% somewhere else.

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/healthcaresystem/bulletins/nationalsurveyofbereavedpeoplevoices/england2015#decision-making-at-the-end-of-life

9. Access to a hospice is desirable but not everyone is eligible for this.  As a part of this review would you review your eligibility criteria?

Yes, the clinical working group will review and standardise the acceptance and exclusion criteria, in line with national guidelines, local need and resources available.

10, What happens if one changes their mind and decides they want to be at a hospice in their last moments and not die at home? (two or three public members shared their experience on how their loved ones wanted to die at home but near time they changed their mind and wanted to be shifted to a hospice but could not get access due to their earlier choice – is this something this review is going to address?

We have heard the feedback that whilst people often say they would like to die at home, they often change their mind and we need to make sure that services are flexible enough to accommodate this.

A download of the Questions and Answers is available here.

In 2015 The National Palliative and End of Life Care Partnership published the Ambitions for Palliative and End of Life Care: A national framework for local action (2015-2020) to improve palliative and end of life care (PEoLC), building on the 2008 Strategy for End of Life Care and other strategies and reports.

It describes what is needed to realise that ambitions, and calls for local health and social care leaders to use these foundations and building blocks to collaboratively build the accessible, responsive, effective, and personal care needed, via a process that is open, transparent and effective.

A refresh of the Ambitions Framework (2021-2026) was published in May 2021, with a reminder that more must be done, building on the learning from COVID-19 pandemic to focus more efforts on personalised palliative and end of life care, to improve support for people of all ages including those bereaved, and to drive down health inequalities.

Each ambition includes a statement to describe the ambition in practice, primarily from the point of view of a person nearing the end of life. Each statement should also be read as our ambition for carers, families, those important to the dying person, and where appropriate for people who have been bereaved.

The eight foundations that underpin the ambitions and are required to bring about this improvement. Different individuals and organisations can lay these foundations, either on their own or collectively.

To support delivery of the six ambitions, the NHS England & NHS Improvement Palliative and End of Life Care Team worked alongside stakeholders to further develop the Ambitions for Palliative and End of Life Care self-assessment tool as a national resource.  

This tool provides a self-assessment framework and process to support localities/ boroughs to

• Support a more coordinated response for localities to determine their current level of delivery of services against the Ambitions for Palliative and End of Life Care - A National Framework for local action (2021-2026).
• To understand where there are strengths and opportunities for improvement and growth that need prioritising within future strategy for palliative and end of life care.  

In order for this self-assessment process to become a meaningful and useful exercise, localities are encouraged to be as honest as possible, with cross-organisational collaboration to complete the tool and achieve the improvements being vital. Localities are strongly encouraged to ensure health and social care are equal partners in this assessment process.

All eight Borough Based Partnerships (BBP) completed the self-assessment tool and came together in two workshops facilitated by the NW London last phase of life programme to facilitate its completion. Participants included representatives of local councils and residents.

All BBPs have now completed the self-assessment tool.  The rich discussions that took place in each BBP breakouts, and feedback from multiple workshop stakeholders, that completing the self-assessment tools with multiple stakeholders locally for each BBP was really beneficial:

• To ensure the information on the tool is as accurate as possible for each BBP and ultimately for completion of the NW London self-assessment.
• To raise the profile of PEoLC locally and regionally.
• To identify the relevant PEoLC stakeholders and building place-based links.
• To start the basis for driving PEoLC improvement work forward at place and within other programme areas.

An analysis has now taken place and a NW London level and this will be used to inform the new CSPC model of care (MOC) in development by the CSPC MOC working group. In addition:

• Key gaps/ areas of improvement identified for other parts of the end of life pathway will be shared with other NW London programme areas.
• BBP self-assessments will be shared with BBP and borough directors with an ask to support any local PEoLC improvements using the findings to inform this work.
• NW London Last phase of life programme will host a 3^rd workshop later in the year for all PEoLC stakeholders across the system to share the outcome of the NW London self-assessment, learning and areas of good practice identified.

We would like to thank partners and local residents for taking part in the workshops and contributing to their success.

From the outset it is important to articulate transparently that palliative and end of life data availability and reliability are a challenge. The data we have comes from multiple sources and there is no national data set. There is also a wide variation in what data our providers collect and how they do this, so we do not have an overarching view of the provider data.

Click here to find out more.

This Pembridge Palliative Care Services in-patient unit has been suspended for use since the end of 2018 as a result of the inability to recruit and retain specialist palliative care consultant cover required to safely run the unit.

All other Pembridge Palliative Care Services (ie. 24/7 specialist telephone advice line, community specialist palliative care nursing and therapy teams and other services) are unaffected and continue to operate.

NHS NW London has not made a decision to permanently close the Pembridge inpatient unit site and, together with the Central London Healthcare Trust (CLCH) who provide the service, are open to recruiting the specialist palliative care consultant to support the safe reopening of the in-patient unit.

We have heard there is still a strong desire for the Pembridge in-patient unit to be reopened and that options from the public for how we could reopen the unit could be more widely considered than they have been to date.

We have two meetings in late 2023 with patient representatives, CLCH and Imperial College Healthcare NHS Trust (ICHT) to discuss options for re-opening the in-patient unit. It was agreed that ICHT and CLCH would meet to discuss whether and how the two services could work together in a more integrated manner to support re-opening the in-patient unit in future with a more robust and resilient staffing model and whether joint recruitment to posts at Pembridge may be possible.   

In the meantime, CLCH have successfully recruited to a fixed term contract post for a specialist palliative care consultant to oversee Pembridge day services and community team services. The recruitment of a specialist palliative care consultant to support the Pembridge in-patient unit is waiting the next stage of the interview and recruitment process.

Find out more about Pembridge inpatient unit.

Simplifying access to community-based specialist palliative care services is a priority for the new model of care.

Work has already been undertaken as part of this new model with the development of a new service directory resource at NW London and local borough level, which can be found here. 

This website, funded by Harlington Hospice, has been designed to enable patients, carers and clinicians to search for palliative care services and resources across NW London and within each borough.

The importance of advance care planning (ACP) was highlighted in the development of the model of care and public feedback during engagement on the model.

ACP is the term used to describe the conversation between people, their families and carers and those looking after them about their future health and care wishes and priorities. It is a way for a person to think ahead, to describe what’s important to them and have this recorded to ensure other people know their wishes to help that person to live well right to the end of their life.

NW London residents can have their care preferences made known and shared with the health and social care system via the Universal Care Plan (UCP).  

From January 2024, all patients with a UCP are now able to view it on the NHS App. This development will increase visibility of patients’ wishes and preferences, and improve transparency between clinician, patients and carers.

A communications resource pack for clinicians that further explains this change can be downloaded here.