North west London online event 03 December 2024

 We would like to say thank you to everyone who attended the event.

Please see the presentation used in the meeting.

Summary of key discussions and points raised

1. General support for the consultation’s intent

• Acknowledgment of the extensive engagement efforts and the intention to improve equity across boroughs
• Recognition of the complexity and ambition of addressing longstanding inequalities in palliative care services.

2. Challenges with enhanced end-of-life beds

• Questions about the role, staffing levels, and operation of enhanced end-of-life care beds compared to hospice inpatient care
• Concerns about whether enhanced end-of-life care beds will provide the same level of care as hospice beds and how they will be integrated with other services
• Requests for more clarity on the locations and accessibility of enhanced end-of-life care beds, particularly in underserved boroughs.

3. Concerns regarding travel accessibility

• Criticism of travel estimates for reaching certain hospices (e.g., Trinity Hospice), with some participants highlighting that public transport options are unrealistic for many families
• Concerns about the safety of traveling at night, particularly for older individuals or those crossing isolated areas
• Emphasis on the emotional strain faced by families when traveling long distances to visit loved ones nearing the end-of-life.

4.. Concerns about growing older population and whether we are planning for this

• Continued concern that these plans addressed the growing older population and increased need that could occur
• Highlighted that more needed to be done to support people living on their own, especially older women.

5. Debate over Pembridge Palliative Care Centre inpatient beds

• Strong concerns from some participants about the potential permanent closure of Pembridge Palliative Care Centre inpatient beds as it is located in a deprived area in north west London
• Highlighting the broader role Pembridge played, including rehabilitation and respite care, which allowed patients to return home temporarily
• Questions about the funding model for Pembridge versus other hospices and what services would be lost if it remains closed.

6. Workforce and resource concerns

• Concerns about how the proposed expansion of services will be staffed, given existing shortages of specialist nurses and consultants
• Questions about whether enhanced end-of-life care beds will rely on district nurses or separate specialist teams and how these will be resourced equitably across boroughs
• Emphasis on the need for a clear and robust staffing strategy, with actual numbers and projections included in future updates.

7. Holistic care and continuity concerns

• Concern that the proposed model of care lacks a clear, overarching framework for managing individual patient care
• Emphasis on the importance of ensuring smooth transitions between home care, enhanced end-of-life care beds, hospices, and hospitals to avoid delays or fragmented care
• Calls for clear explanations of how services integrate and operate as a cohesive pathway.

8. Equity and inclusion issues

• Importance of addressing inequalities for marginalised groups, including those in deprived areas, individuals with disabilities, and those from minority ethnic backgrounds
• Recognition of the changing demographics in NW London, with an increasing number of older individuals living in isolation who will require tailored end-of-life support
• Need for culturally sensitive services that cater to diverse community needs.

9. Positive feedback on improvements

• Appreciation for proposals to expand services such as lymphedema clinics, bereavement support, and Hospice-at-Home services
• Recognition of efforts to standardise services across boroughs, particularly in addressing historical inequalities.

Frequently asked questions (FAQs)

1  . What are enhanced end-of-life beds, and how do they differ from hospice beds?

• Enhanced end-of-life beds

  • Located in nursing homes or similar settings outside hospitals and hospices

  • Staffed by medical professional teams with additional training in palliative care

  • Supported by weekly ward rounds from specialist palliative care teams, including consultants and specialist nurses

  • Designed for patients needing more support than can be provided at home but not requiring intensive hospice care.

• Hospice Beds

  • Located in dedicated hospice facilities

  • Residents will be able to access specialist hospice inpatient beds at all north west London hospices, not just the one closest to them

  • Provide 24/7 specialist care with multidisciplinary teams, including doctors, nurses, and therapists

  • Focus on managing complex symptoms, offering psychological support, and ensuring intensive end-of-life care

2. Where will the enhanced end-of-life care beds be located?

• Locations will be determined based on:

  • Geographic accessibility to minimise travel burdens for families

  • Existing gaps in service provision across the eight boroughs

  • Location to be determined but likely to be in a care home, nursing home or NHS community site

3. What is the staffing model for enhanced end-of-life care beds?

• Enhanced beds will be supported by:

  • Trained care home staff who have additional palliative care training

  • Specialist palliative care teams conducting regular ward rounds and offering on-call support

  • The patient’s GP remains responsible for overall care management, with specialists providing oversight for complex needs.

4. Why is Pembridge Palliative Care Centre inpatient beds not being reopened under Option A?

• Challenges Include:

  • Recruitment of specialist staff, including a consultant and 35 additional personnel, which would take significant time and resources

  • Reopening Pembridge would require closing beds in other charitable and NHS hospices, impacting the services they deliver.

  • There would be a detrimental financial impact on charitable hospices if they were to lose income

  • The consultation has identified other areas such as South Hillingdon with greater unmet need. 

Pembridge Palliative Care Centre will continue to provide a wide range of services including 24/7 specialist telephone advice line, community specialist palliative care nursing and therapy teams and other services.

5. How will travel issues to hospices like Trinity be addressed?

• Feedback on travel challenges will inform the placement of enhanced end-of-life beds

• New locations will prioritise accessibility, especially for families reliant on public transport

• Residents will be able to access specialist hospice inpatient beds at all north west London hospices, not just the one closest to them.

6. How will you address staffing issues?

• A workforce development plan will be developed that includes:

  • Investment in recruitment and training programs for specialist nurses and allied health professionals

  • Collaboration with hospices to provide ongoing professional development and training opportunities for staff

  • Standardising staffing models across boroughs to ensure equitable service provision.

7. How will the model support marginalised communities?

• Services will prioritise equity by:

  • Ensuring that all boroughs have access to consistent levels of care.

  • Providing culturally sensitive care tailored to the needs of diverse populations, including those with disabilities or from minority ethnic backgrounds

  • Improving language access and offering personalised care plans to meet unique community needs.

8. How are staffing numbers determined, and are they sufficient for future needs?

• Staffing levels have been modelled based on:

  • Current and projected population needs, including the increasing number of older adults in north west London

  • Data from existing services, including hospice audits and patient care requirements

  • Efforts are being made to align staffing with national best practice guidelines, although specific benchmarks for palliative care remain limited.

9. What are the main differences between options A and B in the consultation?

• Option A:

  • Introduces enhanced end-of-life beds and other improvements without reopening Pembridge Palliative Care Centre inpatient beds

  • Seen as quicker to implement and capable of addressing north west London wide inequalities more efficiently

• Option B:

  • Reopens Pembridge inpatient beds, requiring significant additional resources, including recruitment of staff

  • Reopening Pembridge would require closing beds in other charitable and NHS hospices, impacting the services they deliver.

  • There would be a detrimental financial impact on charitable hospices if they were to lose income

  • Could delay implementation of other improvements due to the complexity of reopening Pembridge.

10. How will the transition between care settings be managed?

• The model of care aims to ensure seamless transitions by:

  • Establishing clear care pathways that connect home care, enhanced beds, hospices, and hospitals

  • Assigning care coordinators to oversee individual cases and ensure communication between services

  • Providing 24/7 specialist advice lines to support families and care providers during transitions.

11. What support is available for families and carers?

• Bereavement services will be expanded, offering:

  • One-to-one counselling and group sessions

  • Psychological support through hospices and specialist outpatient clinics

  • Increased access to well-being services, particularly in boroughs currently lacking these provisions.

12. What steps are being taken to reduce hospital admissions at the end-of-life?

• By increasing the availability of enhanced end-of-life beds and hospice-at-home services, the model aims to:

  • Provide alternative care settings for patients who cannot be cared for at home

  • Reduce unnecessary hospital admissions by ensuring timely access to appropriate care.