We would like to say thank you to everyone who attended the event. If you have any questions or feedback, please email nhsnwl.endoflife@nhs.net
Please see the presentation used in the meeting.
Summary of key discussions and points raised
The forum served as a platform to discuss the ongoing consultation on improving adult specialist community palliative care services in North West London. The focus was on identifying concerns, clarifying proposed changes, and ensuring equitable access to care across boroughs.
1. Inequalities in access and awareness
- Contributors highlighted significant health inequalities affecting seldom-heard groups such as BME communities, older adults, and those experiencing socio-economic hardship.
- Key Points:
- Participants raised concerns about the lack of engagement with digitally excluded groups, emphasising the need for targeted outreach to bridge the disparity gap.
- There is a broader issue of language barriers, cultural differences, and systemic exclusion among ethnic minorities and refugees.
- The cost-of-living crisis was cited as exacerbating access challenges for vulnerable populations.
2. Accessibility of services
- Several participants questioned how access to services would be facilitated, particularly for those unfamiliar with the care system.
- Key Points:
- The 24/7 palliative care advice line was welcomed but contributors sought clarity on who could access it. Queries arose about the roles of GPs, discharge teams, and community professionals.
- Issues around poor GP access were raised, noting that GPs are seen as the “gateway” to these services but can be hard to see.
3. Proposed model of care
- Contributors welcomed the improvements proposed, including:
- Expansion of 12-hour community-based palliative care services (8 AM–8 PM).
- Establishing standardised Hospice at Home models with up to 24 hours of care.
- Adding enhanced end-of-life care beds in a 24/7 care in a facility by professionals with enhanced skills and supported weekly by specialist palliative care teams across the boroughs.
- Participants sought reassurance on the location and distribution of enhanced beds, ensuring accessibility for all boroughs.
- There were inquiries about collaboration with the voluntary and community Sector (VCS) to support roles like social prescribers and health advocates.
4. Consultation period and engagement
- Concerns were raised about the timing of the consultation during Christmas and New Year, potentially limiting community engagement.
- Contributors suggested enhanced publicity and extended timelines to increase participation.
- There was recognition of prior engagement efforts since 2021 but a call for more targeted outreach to underrepresented communities.
Frequently asked questions (FAQs)
Q1: What is the difference between palliative care and end-of-life care?
- Palliative care is provided from the point of diagnosis for any life-limiting condition (e.g., cancer, dementia) to improve quality of life. End-of-life care refers to the final months or weeks, focusing on comfort and support for patients and families.
Q2: Who can access the proposed 24/7 palliative care advice line?
- Any patient, family member, or healthcare professional can access this line, regardless of whether the patient is already known to specialist services.
Q3: How will you address inequalities among seldom-heard groups?
- Engagement with communities experiencing health inequalities is a priority. Outreach efforts include targeted engagement with BAME communities, refugees, and those digitally excluded.
Q4: What are enhanced end-of-life care beds, and where will they be located?
- These beds offer advanced care for those with complex needs at the end of life. The location of the 46 new beds will be determined back on population needs, consultation outcomes and local implementation. The proposed number of new beds per Borough has been determined based on population size.
- Q5: How will GPs and other professionals support access to these services?
- GPs, community nurses, and acute care teams will play a key role in connecting patients to services. Efforts will focus on improving communication and pathways across the system.
Q6: Is there collaboration with voluntary and community sector organizations (VCS)?
- Yes, the model includes collaboration with VCS roles like social prescribers, health navigators, and advocates to support patients and families.
Q7: Why is Pembridge Palliative Care Inpatient Unit beds not reopening in Option A?
- Option A focuses on expanding services without reopening Pembridge Palliative Care Inpatient Unit beds, as reopening it would require reallocating resources, potentially impacting other hospice services. Option B includes reopening Pembridge Palliative Care Inpatient Unit beds but poses financial and resource challenges.