NHS North West London is inviting the public to share their views on the options for delivering improvements to adult community specialist palliative care services at public events in December 2024 and into the new year.

The events form part of a public consultation on proposals to provide compassionate, high-quality support for residents facing serious or life-limiting illnesses.

The events begin in December and include:

• North West London wide online event – Tuesday 03 December 2024, 3.30-5pm, Click here to register
• North West London wide online event – Tuesday 10 December 2024, 9.30-11am, Click here to register 
• Kensington & Chelsea and Westminster online event – Wednesday 11 December 2024, 2.30-4pm, Click here to register  

Since our last newsletter in the spring we have been looking at all the feedback you have given us and working through the assurance stages that we are required to do with the London Clinical Senate, NHS England and the London Mayor’s Office.

As you can imagine that involved working through all the facts, figures and finances and we have had to put together a pre-consultation business case.  We are pleased that’s all done and have now launched a public consultation on the delivery options for improving adult community specialist palliative care services in north west London.      

We have called the consultation ‘Compassionate care for all’ as we want to make sure everyone facing serious or life-limiting illnesses in north west London has access to high-quality, specialist palliative care. Whether at home, in the community, or in a hospice, the focus is on supporting patients, families, and friends to live as fully as possible and receive compassionate care during life’s most vulnerable moments.

The consultation focuses on creating a community specialist palliative care service that ensures equal access to quality care—whether at home, in the community, or at a hospice. This means every adult in north west London will have access to specialised, round-the-clock care and support when they are at their most vulnerable.

The proposals aim to address a wide range of needs, including:

• A specialist palliative care nursing team available 12 hours a day, 7 days a week, across all boroughs.
• 24/7 telephone support for specialist palliative care advice for all north west London residents.
• “Hospice at Home” services available around the clock.
• Specialist palliative care outpatient clinics in each borough
• Improved access to psychological and bereavement support for families at local hospices.
• Expanded lymphoedema services for conditions related to both cancer and non-cancer causes. Lymphoedema is a long-term condition where a build-up of lymph fluid in your body's soft tissues causes swelling.
• 46 new enhanced end-of-life care beds across north west London, providing additional options for those whose needs cannot be met at home but do not require hospice-level inpatient care.
• Maintaining the 57 consultant-led hospice specialist palliative care inpatient beds that are currently available, which our analysis shows will meet community needs over the next five years.

NHS North West London is now inviting the public to share their views on the proposed service improvements and two specific options:

Option A (preferred option): Fully implement the proposed model, including 46 new enhanced end-of-life care beds, while maintaining the existing hospice beds without reopening the Pembridge Palliative Care Inpatient Unit beds. This option would be easier and quicker to implement and benefit more north west London residents as a whole.

Option B: Fully implement the proposed model, including 46 new enhanced end-of-life care beds and reopen Pembridge Palliative Care Inpatient Unit beds. This option would require a reduction in hospice beds elsewhere and have a longer implementation timeline due to the need to recruit specialist palliative care consultant cover and 35 additional staff.

We are pleased that in both of these options, we are proposing to almost double the number of beds available to local residents and fill the gaps in service provision that have meant that some residents in some boroughs have a less good service. We believe this is the fair and right thing to do.

We are incredibly grateful for all the contributions we have had since we launched the review.  It really made a difference. We want to hear from as many people as possible – patients, residents, carers, members of the public, staff, voluntary sector representatives and advocates as well as partners. Your views are important to help shape future adult community specialist palliative care services for people across north west London.

You can read the consultation document and summary here and you can see more about how you can give your views below.

The public consultation runs for 14 weeks from 18 November 2024 to 24 February 2025.

To give your views, you can:

Complete our questionnaire

You can complete the public consultation questionnaire here.

You can also download and print a paper copy of the questionnaire here.

You can then send it us (no stamp needed) at: FREEPOST, HEALTHIER NORTH WEST LONDON

Write to us or send us an email

You can share your views without completing the questionnaire. If you are feeding back on behalf of an organisation, please state the name of the organisation in your letter or email.

Invite the programme team to speak to your group or organisation

If you would like us to come along to your meeting or group, please contact us by emailing nhsnwl.endoflife@nhs.net.

Come and talk to us

We are holding a series of formal public meetings. This is your opportunity to meet the programme team and other interested service users and residents, to find out more about our ideas and to give your views.  These meetings will feature a short presentation on the proposals and then open question and answer discussions, designed to give everyone the opportunity to take part.

If you would like to come to the public meetings, you will need to book in advance so that we can ensure we have enough space and staff to hear everyone’s views.

These meetings can be viewed here.

Further details will be added as we move forward, including registration details for the events in 2025.

There will also be series of drop-in sessions at community locations (e.g. libraries, civic and health venues) within each north west London borough. Residents will have the opportunity to receive information on the consultation, ask questions and provide feedback at these sessions. Borough lists of these will be updated here.

If you have any questions you can contact the consultation team by email at nhsnwl.endoflife@nhs.net or FREEPOST, HEALTHIER NORTH WEST LONDON (no stamp needed).

We can provide information and support for those who may need some additional help to participate.

Easy read versions of the consultation summary and questionnaire will be available soon.

Hard copies, copies in large print, other formats and translations can be provided on request. 

We can also provide tailored support to participate if you have a learning disability or difficulty in communicating.

Please contact the consultation team by email at nhsnwl.endoflife@nhs.net or FREEPOST, HEALTHIER NORTH WEST LONDON (no stamp needed).

We have published a number of documents to accompany the launch of the consultation here.

This page includes links to:

• The consultation document
• The summary of the consultation document
• The full pre-consultation business case
• The revised model of care
• A briefing sheet on Compassionate care for all
• The consultation poster/flyer
• The online questionnaire
• A downloadable paper version of the questionnaire (which can be returned to FREEPOST, HEALTHIER NORTH WEST LONDON - no stamp needed)

We have added a frequently asked questions section to the ‘Compassionate care for all’ webpage.

This covers questions on the three service areas covered in the proposed model of care and some further detail on the Pembridge Palliative Care Inpatient Unit.  

We intend to add to this as the consultation progresses.

To help people understand what the proposed improvements and service changes could mean to them, we have created an animation. This can be viewed here.

There is also a video explanation from Dr Lyndsey Williams, GP Clinical Lead NHS North West London Last Phase of Life, of what we are proposing and consulting on here.

Palliative care is the treatment and support provided to people who are terminally ill. It focuses on improving quality of life by managing symptoms, relieving pain and addressing any side-effects of a patient’s condition. It also provides emotional and practical support for patients, families and carers.

There is a difference between palliative care and end-of-life care. End-of-life care is a specific type of care for people nearing the final stages of their life. It aims to ensure comfort, dignity and support, managing symptoms and providing emotional and practical help.

Specialist care refers to the fact that the care is provided by palliative care specialists; ‘general palliative care’ is care provided by other professionals such as GPs, district nurses or care home staff.

Community specialist palliative care includes services for people outside of hospitals, such as in their homes, care homes, or hospices. General palliative care’ is care provided by other professionals such as GPs, district nurses or care home staff.

The Pembridge Palliative Care Centre is located at the St Charles Centre for Health and Wellbeing in North Kensington. The inpatient unit has been suspended for use since the end of 2018 as a result of the inability to recruit and retain the 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 day hospice services and outpatient services and other services) are unaffected and continue to operate.

NHS North West London has not made a decision to permanently close the Pembridge inpatient unit and, together with the Central London Healthcare Trust (CLCH) who provide the service, have remained open to recruiting the specialist palliative care consultant cover necessary to support the safe reopening of the inpatient unit.

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

We had 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 inpatient unit in future with a more robust and resilient staffing model and whether joint recruitment to posts at Pembridge may be possible.  

These discussions have now taken place. However, it proved very difficult to find a suitable solution and the impact of trying to do this would be significant on both providers and would risk destabilising Imperial’s workforce significantly. NHS North West London is satisfied that the relevant conversations between ICHT and CLCH have taken place and no alternative solution has been deemed feasible, and that therefore the discussions have come to a close.

During our work to define the new model of care, specific concerns were raised about the following three issues, each of which is addressed in the revised model of care, main consultation document and the pre consultation business case:

• Travel and access to services (including the impact of Pembridge Palliative Care Inpatient Unit not reopening)
• Making sure our model of care meets changing population needs
• Making sure we have the right number and distribution of our hospice inpatient beds to meet future need.

Travel and access to services

Access to services must be fair to all and also ensure there are reasonable and equitable travel times. Travel times and accessibility are important when considering any change to services. We used a tool developed by Transport for London to compare the average travel times by car and public transport at peak time travel to the nearest eligible hospice. 

We found:

• On average it took all north west London residents 40 minutes by public transport and 19 minutes by car to get to their nearest hospice.
• Around a third of people (34%) can access their nearest eligible hospice within 30 minutes and 80% can access it in less than 45 minutes
• For those travelling by car, approximately 30% of people would incur a travel journey of 15 minutes or less and 90% would be travelling for 30 minutes or less.
• People living in the south of Hillingdon and Hounslow were found to have among the longest travel times to a hospice inpatient bed care unit because of the absence of available alternatives in the area.

The suspension of Pembridge Palliative Care Inpatient Unit means that patients have to travel a little bit further to get inpatient care in one of our other hospices.

We recognise that any permanent changes to the unit will mean longer travel for those who in live in the local area. Whilst this option is included within the consultation, we recognise the strength of local feeling on this impact.

Our analysis also shows that people living in the most deprived areas are not adversely impacted by travel times to their nearest hospice. The exception is Hillingdon where travel times for residents who live in the south of the borough using the Michael Sobell Hospice take at least 60 minutes to get there if they use public transport at peak time.

Making sure our model of care meets changing population needs.

In order to make sure that the services that we were putting in place would meet likely demand over the next ten years we looked at population growth projections as well as how many people are going to die. This analysis can be viewed here.

Making sure we have the right number and distribution of our hospice inpatients beds to meet future need.

Hospice inpatient beds serve the small number of people with most complex needs. Those requiring 24/7 care in a dedicated unit, supported by specialist teams. Currently, there are 57 beds being used in north west London. 13 beds at Pembridge Palliative Care Inpatient Unit were suspended in October 2018 and we use three additional beds at other hospices when needed.

A joint clinical audit of hospice inpatient admissions was conducted in 2022, covering all five hospices providing inpatient services to north west London. This found that 26% of patients could have had their needs met with alternative care such as nursing home care or enhanced end-of-life care beds. It meant that we would have had additional hospice inpatient beds available if these patients care had been supported in alternate care settings.

Our analysis shows that the number of beds currently being used would be sufficient to meet future demand for hospice inpatient care until 2027/28 and the beds at Pembridge Palliative Care Inpatient Unit are not needed to meet this future need.

We have created summaries for each borough covering the proposed new and improved  community specialist palliative care services for adults.

These can be viewed here.

The consultation will run for 14 weeks (until 24 February 2024) after which all of the feedback and responses received will be collated and analysed in a report by Third Sector Together (3ST), a local alliance of the voluntary and community sector across north west London. 

This will be published on our website.

In determining the agreed option for implementation, NHS North West London will consider the outputs from the public consultation and use this to inform the final decision.

No decisions about any changes to services will be made until after the full public consultation has taken place and all of the information, including the feedback from the consultation, has been considered.

Please note that this consultation has no connection to the Assisted Dying Bill currently being discussed in the national media and UK Parliament.

This consultation and the review programme work that has pre-ceded it is entirely focused on creating a community specialist palliative care service that ensures equal access to quality care—whether at home, in the community, or at a hospice- for north west London residents.