Adult community-based specialist palliative care (CSPC) review

 

It is widely recognised that when caring for someone in the last year of their life, we have only one chance to get it right.

Local people across North West London are to be asked what is important to them as the NHS and its partners look to develop a community-based specialist palliative care service that delivers high quality care and excellent patient experience.

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).

The North West London Integrated Care System (NW London ICS) 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. A summary of the Issues Paper has also been produced as has an easy read version called Improving services for people at the end of their lives.

Following a widespread engagement exercise North West London Integrated Care System has published an interim engagement outcome report that contains all the feedback given following discussions with local residents and those who have first-hand experience of palliative and end of life care received in NW London.  We would like to thank all those who have taken part.

Find out how you can get involved

All the public feedback received will be used by our model of care working group, which will be responsible for designing, planning and mobilising the future model of care for adult community-based specialist palliative care. 

Membership of this group consists of local residents, clinicians and other palliative and end of life care stakeholders. The group will be asked to:

  • agree a common specification / common core offer for community-based specialist palliative care
  • develop a new model of care to deliver the specification / common core offer
  • map out how this can be implemented in each borough.

The work draws on the national service specification for adult palliative and end of life care, the previous NW London palliative care review programme work and qualitative and quantitative feedback from residents and healthcare professionals obtained through our engagement. We will also utilise activity trend data obtained through the programme’s data working group and undertake further work looking at the structure of our services workforce.

The expected output is a set of core service standards, requirements and service functions that will need to be delivered across NW London. There will also be a number of additional localised requirements that the local Borough Based Partnerships will have responsibility for implementing these in view of their local context and population needs.

If you have any questions, please do not hesitate to get in touch with us by emailing nhsnwl.endoflife@nhs.net

“We have seen what a difference specialist palliative care services can make to a patient and their families and carers as they come to the end of their life but unfortunately we have seen what can happen if the care and support is not there and the damaging legacy for those left behind. That is why it's important that we work together to develop services that are clinically to a high standard but also meet what patients and family’s need."

Dr Lyndsey Williams, NW London GP Clinical Lead for End of Life and Care Homes

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).
  • 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.

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 will not be reviewing hospital based specialist palliative care and related services delivered universally.  Other NW London service improvement programmes are underway to support this including acute discharge, care homes and community nursing.

We will be working hard to make sure that our work links closely with developments in hospital specialist palliative care, all other generalist palliative and end of life care services, and related transformation programmes in NW London.

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.

Click here to find out more.

We have received a tremendous amount of feedback which we are responding to and have taken to date. There are also some areas we aree 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.

We will be adding to the insight report as we analysis the feeback received and actions taken in response, but if you think there is anything we have missed, we would be pleased to hear you by emailing nhsnwlccg.endoflife@nhs.net or write to us using the following address:

Community-based specialist palliative care review
North West London Clinical Commissioning Group
Ferguson House
15 Marylebone Road
London NW1 5JD

 

Feedback

Actions  taken to date

  • Align GPs more closely with individual care homes and develop enhanced care service for care home residents.
  • This needs to include the development of  personalised care plans to support their care needs and expressed wishes and involve relevant health professionals and the families and carers in these care planning conversations in as much as possible.
  • As part of the PCN Direct Enhanced Service (DES) all care homes in NW London have a named GP and where possible are aligned to a single PCN. We are currently working on developing a NW London wide common core standard that will provide enhanced support to care homes and cover the provision of Multi-Disciplinary Team (MDT) working and personalised care and support planning. This includes advance care planning and use of Coordinate my Care/Urgent Care Plan.
  • Increased access to end of life and anticipatory medication in the community. Community Pharmacists should be included in the engagement and review process to understand the issue of availability and timely access to end of life medication for patients, families / carers and clinicians in the community.

 

  • Not all boroughs had the same level of in and out of hours access to end of life care and anticipatory medication. The gap in West London, Central London and Hammersmith & Fulham boroughs was closed by commissioning an equivalent service meaning that during the pandemic all NW London residents have equal access to these medications 24 hours a day. The NW London Medicines Management Team have recently reviewed the service contracts and are putting plans in place to ensure ongoing 24-hour access to end of life and anticipatory medications in the community.

Feedback

Action being taken

  • Include clinicians in public engagement meetings and patients in programme working groups for the purpose of transparency and trust.
  • During the review of palliaitive care carried out previously by four CCGs which have since merged as part of NW London CCG, we had a clinical reference group who worked on development of the new model of care and options. We did not have any public and patient representation on this group. For this programme, we are planning to have a clinical model working group that will have public, clinical and operational lead representatives.
  • Access to 24/7 end of life care advice and support for patients, families, carers and clinicians, which includes a single point of access and co-ordination service. This is of particular importance during the out of hours period between 5pm and 8am when the patient may be experiencing a lot of pain and the family and carer may not be able to contact the usual care team or know which services to contact for support.
  • All of the hospices that provide services in NW London now provide 24/7 nurse led advice lines that have 24/7 palliative care consultant support.
  • A further gap was identified for the Harrow Community Specialist Palliative Care team who did not have seven day working and visiting available. We have secured funding to support the development of this service and work is underway to mobilise this as soon as possible.

Feedback

Action we propose to take

  • Having 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 time. Consideration should be given to re-opening the Pembridge inpatient service as part of the service review.
  • 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.
  • Not enough support available or consistent offer of bereavement support (pre and post death) available to patients, families and carers. Could this reviewed as part of the latest programme of work to understand current provision and what more could be done to improve this offer.
  • Bereavement care and support really came to the fore as a gap nationally, regionally and locally during the Covid-pandemic.  Through the community-based specialist palliative care review programme we will be scoping current provision and gaps for NW London which will then be considered as part of the new model of care development work.

Feedback

Reason why we are not able to take action at this stage

  • We have heard from local residents and stakeholders that they would like the NHS to reopen the Pembridge Palliative Care Unit in-patient beds.
  • 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. 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.
  • In April 2020, the inpatient beds at Pembridge were temporarily re-designated for the for rehabilitation of Covid positive patients. We were able to staff the service – which was not consultant led - because we had national guidance to pause many other services. It is unlikely that Pembridge will be required to fulfil this function again due to the knock on impact on those other services.
  • We do recognise that local residents are disappointed with the need to suspend this inpatient service and confirm that a decision on the future of the unit will only take place following the completion of the community-based specialist palliative care review.
  • Qualitative factors such as local accessibility and stakeholder views will be an important consideration, alongside quantitative factors such as capacity and referrals when making any decisions as part of this review,  including on the future of the Pembridge in-patient beds.

 

A download of the insight report is available here.

 

We want your help in exploring what the issues are in community-based specialist palliative care and coming up with possible solutions.

Over the coming months we will have lots of ways that you can get involved and opportunities to give your views.

Find out how you can get involved.

We have used engagement events, meetings attended and 1:1 interviews as a way of obtaining information from local residents, experts and representatives of particular groups.

Find out more about the engagement we have carried out.

We want to use case studies to illustrate the good experiences and the challenges that people face when using community-based specialist palliative care services so that we can learn from their experiences.

Click here to view our case studies

If you have a story you would like to share to help us improve community-based specialist palliative care please email nhsnwlccg.endoflife@nhs.net

Following advice from specialist voluntary organisations, such as St Mungo’s and Groundswell it was decided that a literature review using existing research would be the best approach in terms of understanding what we need to improve on in terms of community based specialist palliative care for people from a number of different groups and demographics.

View the literature reviews

If you would like to provide feedback on the literature reviews email nhsnwlccg.endoflife@nhs.net

As part of the review of community-based specialist palliative care services in North West London, the review team were keen to learn more about the views of public and professional audiences on current services, ways of working and priorities for improvement and change. 

Click here to find out more about the surveys carried our and the feedback received. 

Click here to view the latest survey.

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.

The North West London Integrated Care System has published an interim engagement outcome report that contains all the feedback given following discussions with local residents and those who have first-hand experience of palliative and end of life care received in NW London. 

Our ambition is to improve community-based specialist palliative care and support for adults, families and carers in NW London.  The only way we are going to succeed is if we work closely with local residents, families and carers to develop services that truly meet their needs.

View the interim engagement outcome report

The model of care working group was set up by the NW London ICS to develop a framework and action plan to ensure that high quality community based specialist palliative care is delivered equitably and sustainably across NW London, and that all residents are able to access the service if it is needed.

Find out more about the model of care working group.

 

When Pembridge inpatient unit was suspended in 2019 NW London committed to completion of the review prior to any decisions were 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.

Find out more about Pembridge inpatient unit.

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