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 which also facilitates tailoring in response to local need
  • support the development of a long list of options for delivery of the new model of care

The expected output is a set of core service standards, requirements, service line definitions demonstrating what we believe good community-based specialist palliative care looks like and co-designed principles required to successfully design and deliver the model of care 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

As laid out in the Issues Paper, there are eight broad reasons why we need to improve the way we deliver our community-based specialist services to make sure everyone receives the same level of high-quality care, regardless of their circumstances. 

We have carried out an analysis of all the feedback received through the webinars, surveys, one to one conversations, meetings attended and literature reviews and grouped the feedback received against the eight broad reasons. 

To review 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, and the further engagement activity carried out in Ealing, Harrow, Hillingdon and Hounslow.

In the previous review of community-based palliative care provision in in 2019 and 2020 we talked to people about community-based specialist palliative care services and heard what a crucial role the services play. The feedback confirmed that people value their local specialist services and would like to receive them as close to home as possible, and people with experience of these services are very positive about the care they have received. Local residents and stakeholders said they would like the NHS to reopen the Pembridge Palliative Care Unit in-patient beds following their temporary closure in October 2018 due to a lack of specialist care consultant cover and being unable to recruit due to the national shortage of trained personnel (see Section 1.2 Insight report and actions taken for further details).

We also heard that services need to be made available to more people 24 hours a day, availability of care needs to be improved during the out-of-hours periods (between 5pm and 9am) particularly, services need to be more inclusive and adaptable, offer more choice and more be more joined up. 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.

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.

In January 2020, Hillingdon Commissioning Group (HCCG) performed a review of End of Life Services looking at the views of general practitioners (GPs) and the lesbian, gay, bisexual, and transgender community (LGBT).

See the Review carried out on End of Life Services in Hillingdon in January 2020.

To bring services in line with national policy. Such as:

  1. The national Six Ambitions for Palliative and End of Life Car

  2. The NHS triple aim of improving access, quality and sustainability

  3. Ensure providers follow the National institute of Care and Excellence (NICE) guidelines for palliative and end-of-life care services.

  • We will utilise the learning and gaps in improvements taken from the borough and ICS level self-assessments against the six national ambitions for palliative and end of life care. 
  • Future community-based specialist palliative care services will need to align with national standards and guidelines.
  • This includes adhering to the national service specification for community-based specialist palliative care.

To meet patients’ changing needs arising from changes in the population. By 2040, the number of deaths within England and Wales is expected to rise by 130,000 each year. More than half of the additional deaths will be people aged 85 or older, so there will be an increased need for palliative and end-of-life care services.

  • We will need to take into account aging population with likely increased demand on community-based specialist palliative care.
  • The number of people living with dementia is increasing which brings increased complexity of care needs. 
  • The number of elderly people living on their own is increasing with no one to care for them. Often they can live away from their family leading to social isolation.
  • This includes support for the family and carer supporting them.

To reduce health inequalities and social exclusion, which act as a barrier to people receiving community-based specialist palliative care.

  • Review should look at ways of tackling the widening Health Inequalities for people who require palliative and end of life care and support service.
  • Attention should be given to isolated people, those with family outside the country or in different regions, elderly couples that are physically or mentally unable to care for each other, the large number of disabled people that require specialist care and those who experience homelessness.

To make sure that everyone receives the same level of care, regardless of where they live. At the moment there are differences in the quality and level of community-based specialist care services that patients, families and carers across North West London receive. This means that depending on where a patient lives, they and their family and carers may always be able to get the support they need, and may not be able to have their wishes supported at the end of their life. We want to do all we can to make sure this is not the case.

  • Implement a 24/7 telemedicine co-ordination, advice and support service for care home staff to better support their residents at end of life.
  • To improve co-ordination and navigation of care and support available, implement a single point of access (preferably a single telephone line) for patients, family, carers and clinicians to contact to obtain information about what palliative and end of life care services are available, how to access them, support with getting medication and equipment etc.
  • To build flexibility into the service model that supports a person and their family to change their mind about place of care and place of death even if it is at the last minute. This could be where a person has always said they wanted to die at home but change their mind as they and the family are scared or believe it is too hard on the family who initially thought they could cope. Instead they want to go to a hospice or a hospital.
  • Align GPs more closely with individual care homes and develop enhanced care services.
  • Pembridge in-patient service should be reopened.
  • A review of the number of hospice inpatient beds should take place.
  • The number of and quality of care plans need to be improved.  Patients and families need to be given access.  More needs to be done to ensure health professional access the care plan routinely when seeing patients.
  • There needs to be improved record keeping around preferences, treatment etc. and more needs to be done to make sure they are automatically accessed by the people providing care.
  • The need to identify that someone is dying and recognise this earlier was identified as an important point that feeds directly into the patient and families choices about appropriate treatment etc.
  • We need to make sure that there are wrap around care to provide support to the patient if they are to stay at home.
  • Care needs to be holistic, and include clinical and non-clinical support e.g. Home adaptations, advice and support on what to do when a patient passes away.
  • There is a lack of bereavement support across NW London for families and carer.  A review of current provision is needed to understand what type of support is needed and how it could be delivered.
  • We need to ensure we consider the impact of caring for someone who is dying on family and carers.  Concerns were raised about impact on:
    • unpaid carers and those who are older
    • Those who have their own health issues and are struggling
    • Are trying to hold down employment or have kids and are busy and what that means for them trying to undertake a caring role.
  • The way someone dies can have a big impact on the person caring for them and we need to ensure that support for relatives and carers continues after the person has died.
  • Palliative and end of life care needs to be patient centred and the importance of family/carers/those of importance to the person being involved in decision making and kept informed.
  • We need to think about how we design more integrated services, between the patient and family, the community, social care and clinical services.
  • Care and support needs to be available 24/7 365 days a year (including pain relief). out-of-hours service (OOH), consider including an OOH service to impatient services to enable carers and patient seek help when needed.
  • Lack of clarity for carers/family around medication. Medication for EoLC patients should be thoroughly explained to carers/family members so they are able to identify which medications are missing and act quickly.
  • Family members and carers should be kept informed at every point during a patient’s care pathway.
  • Professionalism, Confidentiality and Compassion - Clinicians visiting family homes to see EoLC patients should be briefed fully on the patient’s condition/situation and maintain the highest level of confidentiality when they are communicating with other clinicians in the presence of the patient and other family members.

To make it easier for people to access services, particularly across our more diverse communities. Some of our services are not joined up and do not work well together, and we need to change this.

  • More needs to be done to create culturally competent services that take into account cultural and faith beliefs.
  • We need services that are able to care for people from ethnic minorities who may not speak or have difficulty speaking and understanding English.
  • Participants identified a need for existing care and support services to do more in reach into different communities in a culturally sensitive way.
  • More needs to be done to promote community-based specialist palliative care, encouraging people to think, talk and plan about end of life care.
  • The importance of having local services was stressed with reference to the cost, time and difficulty of using public transport.
  • Need to design services that take into account people cultural and faith needs.
  • Creating seamless service provision with services properly integrated with other ancillary services like 111 would make them easier to access and improve patient experience of care.

To cope with the increasing financial challenge, the NHS is facing and the effect this has on community-based specialist palliative care.

  • Consider a proper financial settlement for hospices as their financial situation has been exacerbated by Covid.
  • Local residents wanted to know more factual information on finance, demography and the help available locally.
  • Look at ways of clawing back some funding from the NHS service providers when patients with intensive clinical needs decide to die at home.

To reduce the difficulty, we are having finding, recruiting and keeping suitably qualified staff, and the knock-on effect this has on our ability to provide services.

  • A comprehensive workforce plan is needed to address the workforce challenges mentioned in the report.
  • More needs to be done to educate and train all workforce to identify need. This should be NHS, Local Authority (social care) and voluntary groups so they can capture and signpost potential need.
  • Need to build extra capacity and extra staff to meet growing demand.

The full interim engagement outcome report 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 3rd 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.

We have carried out future service capacity and demand modelling that will allow us to project the likely level of service provision that is needed over the next five years. We need an inpatient bed base that allows us to care and support patients with a range of needs. This includes

  • Complex patients with a range needs who require intensive support
  • Patients nearing the end of their lives who are not able or do not wish to stay in their own home

As palliative need and deaths are directly correlated, we know that palliative need across NW London is projected to grow by 12.7% over the next 5 years.  Approximately 3% of those with palliative needs may end up using an inpatient bed. 

This leads to a projected increase in the number of admissions to inpatient units (IPU) where people have to stay in a bed for at least one night from 962 per year to approximately 1,084 admissions by the year 2027. Similarly, it is predicted that the number of days in which NW London patients occupy beds will grow from 15,775 to 17,781 by the year 2027. 

It is, however, important to relate this to the number of bed days contracted by NW London across the seven hospice providers with inpatient units.

Presently, NW London contracts 20,719 bed days (inclusive of Pembridge Palliative Care Service commissioned beds).  Taking into account that many, if not all patients who would have used Pembridge used alternative hospice beds average occupancy of hospice beds across NW London in 2021 was 76%. 

Based on future demand projections, with current hospice inpatient unit’s arrangements remaining in place (consultant-led hospice inpatient unit commissioned bed days), the average occupancy of contracted beds would increase to 86%.

Although ‘unused’ capacity must remain in place to account for fluctuations in demand and operational constraints, it is projected that there is both sufficient and unutilised capacity in the inpatient unit bed-stock to address the predicted increase in demand for hospice beds.

Projecting our future inpatient bed (IPU) requirements over the next five years

We have calculated a 12.7% increase in the number of unique patients accessing all service lines by the year 2027 against current usage. We are able to do this as palliative care need is directly linked to the number of deaths. 

We have used NW London and ONS death data and projections for future rates of death and this shows there is a predicted year on year increase of deaths and thus palliative need of 1.99% across NW London, translating to a 12.7% increase by 2027. See figure below.

NW London is projected to experience a 12.7% increase in CSPC demand by 2027

 

Variation in service access, demand and provision may be hidden by looking at service lines in totality and using averages, which unless effectively addressed, may widen over time.

There is fragmentation of services and variation in across boroughs, resulting in differential access to varied service types for populations across NW London.

We will be carrying out a travel mapping exercise on access to CSPC services for the NW London population so we can understand:

  • The current state of access to service and areas of specific challenge
  • Where there are existing inequalities
  • If and how changes will impact future access (specifically whether inequalities are created).

Click here to find out more.

A core and common offering will be created across all other community-services to make sure all populations have access to a consistent level of high quality care, reducing inequality and unwanted variation.

In addition to the core service offering, individual boroughs will be able to develop additional services in order to meet local needs, and better safeguard against service inequity.

We are committed to making changes to community services that will meet the needs of NW London residents. Co-design (and integration) the different types of bedded care that are available will ensure maximal utility is achieved from repurposed resource.

We will retain the current hospice inpatient service capacity and the resource needed to deliver it. This will make sure we are able to respond to fluctuations in demand and meet the projected increase in need.

We need to make sure we use the budget allocated to community-based specialist palliative care as efficiently as possible so that we are providing the maximum amount of high quality care services that we can.  This could include investing in the other community-based specialist palliative care core services including:

  • Different types of bedded care such as enhanced care home beds
  • Community-based specialist palliative care team
  • 24/7 specialist palliative care advice
  • Hospice@home
  • Hospice outpatient clinics and wellbeing services
  • Psychological support
  • Bereavement support

The NW London CSPC Model of Care Working Group is continuing to finalise these service models (including the types of beds being suggested). These will be made available when this work is completed.

We will make sure community-based specialist palliative care services have the flexibility to increase service provision against the projected growth in need for the next five years and beyond.

We will develop sustainable services that recognise current and projected service demand and take into account our current workforce and the limited availability of specialist palliative care professionals including consultants. Whilst recommendations have been set out by national bodies such as the Association for Palliative Medicine APM), there are limitations in how these can be applied to NW London services.

We will continue to focus on developing existing services and reaching out to communities and groups who are not currently using community-based specialist palliative care services.

Supporting services and activity

In order to deliver the new model of care, we will need to make sure our providers have access to an extensive range of support services such as IT infrastructure or a workforce with the right knowledge and skills that is able to deliver high quality compassionate care.

It also builds on much of the feedback we obtained through our engagement about what the need to make sure we reach and take into account the different cultural and faith needs of our NW London population. This includes:

  • Digital & data (e.g. Urgent Care Plan (UCP), remote working, information sharing tools)
  • Governance (e.g. how to ensure accountability for service improvement and safeguard high standards of care)
  • Workforce support (e.g. exploring ways to improve our workforce skills, tools and abilities to deliver high quality care, e.g. training offer/programmes)
  • Organisational development (e.g. exploring ways to drive workforce recruitment, retention, deployment and development)
  • Developing culturally competent services (e.g. making sure that our services have the skills and knowledge to take into account the diverse needs of our population)
  • Community outreach (e.g. developing a community outreach programme to explain the importance of CSPC and how to access it)
  • These are crucial support functions which will allow us to achieve improvements in the quality of care we are able to deliver.

These do not directly affect the delivery of patient care but are important in their own right as they provide the support mechanisms by which the workforce and their organisations deliver care.

These supporting services and activity are needed to make sure we can deliver our future model of care. They are not options which require long listing, short listing or consultation, but rather consistently underpin all elements of future working arrangements.

Our future bedded care needs

Our definition of the new Model of Care for community-based specialist palliative care services will continue to iterate as we continue to engage - the description below is our current position to inform the committee of current thinking.   We need to develop bedded care that allows us to care and support patients with a range of specialist palliative and end of life care needs. This could be in a number of locations including a hospice inpatient unit, a care home or a patient’s own home with community support.

Patients with complex needs who require intensive support and are unable to or do not wish to stay at home

We need to be able to care for people with unresolved very complex needs that cannot be met by the capability of the community teams e.g. district nursing, specialist palliative care nursing and primary care and need more intensive specialist palliative care intervention. These needs may be physical with management of complex symptom or rehabilitation required; psychological, social and/or spiritual where we need to take into account family situations and ethical dilemmas regarding treatment and other decisions.

Mr X has a brain tumour and has only a few weeks to live. He has recurrent seizures and nausea which is difficult to manage and needs constant medical support to control his symptoms.  The best place for Mr X to receive his care could be a hospice inpatient unit where he will have support of a specialist consultant palliative care consultant and specialist palliative care nurses.

Mrs D has metastatic cancer that has spread to different parts of the body.  She has severe pain which is distressing for her and her family and they are struggling to cope with managing her care at home. The best place for Mrs D to receive her care could be the hospice inpatient unit where she will have support of a specialist consultant palliative care consultant and specialist palliative care nurses. If her pain becomes stable she may be able to return home and continue to be supported by community services in the home.

Patients with less complex needs and are unable to or do not wish to stay in their own home but are also not appropriate for hospice inpatient unit admission

We need to be able to care for people with a progressive life-limiting illness, with or without comorbidities, where the focus of care is on quality of life, including complex symptom control.

 

Example: Ms B lives on her own, without nearby family, and has a life-limiting illness. Her condition has gradually progressed and although she is not in crisis the community-based specialist palliative care services, general health and social care services are now unable to meet her care needs. Ms B and her family are worried that she is not coping well in her last months of life.  The best place for Ms B to receive her care could be in a care home where they can provide enhanced support and care for her symptoms 24-hours a day.

Mr S has deteriorating dementia. Whilst he has a life limiting illness he is physically still quite strong but his family is struggling to cope. The best place for Mr S to receive support is a care home where they can provide enhanced support and care for his symptoms 24-hours a day.

 

Patients with less complex needs who wish to stay in their own home and with the right level of support are able to do so

We need to be able to care for patients with less complex needs who, in their final weeks of life, wish to and, are able to stay at home using general community services (e.g. District Nursing, GP, Continuing Health Care Fast Track) alongside a range of specialist community palliative care services (e.g. the Community Specialist Palliative Care Team who are able to provide specialist advice and input and Hospice@home who are able to provide time limited support for increased in care).  However, should these patients’ needs exceed the capability of the community services available, a change in place of care (i.e. hospice inpatient unit/ hospital/ care home) may be necessary.

Mr J has COPD and is in the last few weeks of life.  He wants to die at home and his family wish to support him to do so.  A range of services have been put in place to allow him to do so including oxygen, pain management and bereavement support for the family available from community services, both general and specialist. Mr J deteriorates rapidly and passes away at home.

Mrs G has rapidly deteriorating lung cancer.  She and her family wish her to stay and die at home, she has increased care needs with less complex symptoms. Hospice@home, which provides time-limited but intensive support, has been able put in the support to allow that to happen in her final weeks.

Mrs K has metastatic breast cancer. The family wished Mrs K to stay at home and with support from a variety of community services, including hospice at home and community based specialist palliative care team this had been achieved for some time. Sadly, as Mrs K continues a gradually deteriorates her family and community services are no longer able to cope with her care needs. Mrs K’s needs could be best met at a care home where she is able to get 24-hour enhanced support for her on-going care.

Patients only needing generalised palliative care and no specialist input who wish to, and with the right care and support, to stay in their own home in the last few weeks of their life

 

Mrs X has stable but non-curable Myeloma. She has end of life care needs that does not require input from the community-SPC team. She and her family wish for her to stay at home for her care and death. With the support of their GP they have developed an Urgent Care Plan that sets out what they want to happen if Mrs G symptoms deteriorate and they are no longer able to cope. Community Nursing, Continuing Health Care and the patient’s GP could enable this to happen

 

The purpose of the NW London CSPC Steering Group is to provide executive oversight and governance as we seek to deliver quality improvements to CSPC.

To find out more about the NW London CSPC Steering Group click here.

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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