Compassionate care for all

Improving adult community specialist palliative care services in north west London.

Public consultation 18 November 2024 to 24 February 2024.

An opportunity to give your views on how we best improve these services for north west London residents.

Compassionate care for all is doing the best for patients, families and friends when they have a serious or life-limiting illnesses such as cancer and need the care and support to live the best possible life that their condition allows.

Compassionate care for all is making sure we have high quality and compassionate care whilst you at your most vulnerable during the last few months or weeks of life.

Compassionate care for all is knowing that all adults who live in north west London have equal access to the highly specialist care and support you get from our NHS and charitable hospices at home, in the community or if you need it a hospice bed.

What do we mean by community specialist palliative care?

When we talk about ‘community’ services, we mean all services that are not based in a hospital. The proposed services would be in hospices, care homes and people’s usual place of residence.

‘Palliative care’ describes 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.

‘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.

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.

What we are proposing

We are proposing changes to improve care for residents in north west London who need specialist palliative care support. Our key proposals include:

• A community specialist palliative care nursing team, supported by a specialist palliative care consultant, who are available 12 hours per day (8am to 8pm), 7 days per week in all boroughs.
• 24/7 specialist palliative care telephone advice available to anyone in north west London
• Hospice at Home care services available 24/7 in all boroughs 
• Specialist palliative care consultant and specialist palliative care nurse-led hospice outpatient clinics available in all boroughs
• Lymphoedema services for both cancer and non-cancer causes in all boroughs. Lymphoedema is a long-term condition where a build-up of lymph fluid in your body's soft tissues causes swelling.
• Improved access to psychological and bereavement services at local hospices for all boroughs
• Opening 46 new enhanced end-of-life care beds which will be available to residents of all boroughs (building on the 8 beds currently available in Hillingdon). These beds seek to prevent hospitalisation of people whose needs mean they cannot be cared for at home but they do not require the intensive specialist palliative care provided in a hospice inpatient bed. The enhanced end-of-life care beds are supported by health and care professionals with enhanced end-of-life care knowledge and skills and the community specialist palliative care team on a weekly basis.
• Keeping open the current 57 consultant-led specialist hospice inpatient beds. This is the same number of beds that are open now (this does not include the inpatient specialist palliative care beds at the Pembridge Hospice, which have remained suspended since 2018). We have undertaken north west London wide analysis which supports that 57 beds will meet the needs of our population for the next 5 years.

We want to make sure these changes help provide the best possible care for everyone in north west London, whether they wish to receive care at home, in a care home, in a hospice, or in enhanced end-of-life care beds.

Before we make any decisions, we want to hear from you about our proposal and how it could affect you, your family, your loved ones, or someone who you are caring for. This will help make sure that we can provide the best possible care and support for north west London residents (18+) who require community specialist palliative care.

For more information and to read the full proposal, visit the NHS North West London website here: www.nwlondonicb.nhs.uk/cspc       

The survey will take approximately 10-15 minutes.

We are consulting on two options for how adult community specialist palliative care services should be delivered in north west London. Please read the brief descriptions of the two options and provide your feedback.

Option A (preferred option): Full implementation of the proposed model of care with Pembridge Palliative Care Inpatient beds not reopening

• We will almost double the number of specialist supported palliative care beds in north west London by keeping open all current specialist palliative care hospice inpatient beds and introducing 46 new enhanced end-of-life care beds.
• All residents will have access to the same high-quality community specialist palliative care services regardless of where they live in north west London 24/7.
• This option retains the 57 hospice specialist palliative care inpatient beds without reopening Pembridge Palliative Care Inpatient beds.

This option is easier to implement and can be delivered sooner, benefiting more people across north west London.

Option B: Full implementation of the proposed model of care with Pembridge Palliative Care Inpatient beds reopening

• We will almost double the number of specialist supported palliative care beds in north west London by keeping open all current specialist palliative care hospice inpatient beds and introducing 46 new enhanced end-of-life care beds.
• All residents will have access to the same high-quality community specialist palliative care services regardless of where they live in north west London 24/7.
• Our review of the new model of care concluded no additional inpatient beds are required, so the total number of beds across north west London would remain unchanged. This would necessitate reducing the number of beds in neighbouring charitable and NHS hospices to accommodate the reopened Pembridge Unit, which could impact those services.

This option has an unclear timescale for delivery due to the required recruitment of at least one specialist palliative care consultant and 35 additional staff members. This option may also impact on other inpatient specialist palliative care hospices.

We know that by talking and listening to people about our proposals, new evidence may emerge that could influence our view. No decisions have been made, and NHS North West London remains open to considering both options post-consultation.

Consultation questions

We are keen to hear from a broad mix of people and to consider any differences or potential service adjustments that may apply to different groups. Completing the next section will help us to assess which groups we have engaged.

This section is optional, and your views will still be taken into account if you choose not to complete it.

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