We would like to say thank you to everyone who attended the event.
Please see the presentation used in the meeting.
Many attendees welcomed the introduction of the new model of care, recognising its potential benefits in enhancing palliative care services. However, there were significant concerns about the permanent closure of the Pembridge Palliative Care Inpatient Unit. Attendees expressed worries that this closure would result in a loss of local services, necessitating longer travel times for patients and their families.
Summary of key discussions and points raised
- Accessibility of palliative care services
- Some attendees expressed the view that there was a lack of palliative care services based within Hammersmith and Fulham (H&F)
- The need for improved geographical distribution of services to ensure local accessibility was highlighted
- The importance of ensuring 24/7 telephone support for families and healthcare professionals was emphasized.
- Enhanced end-of-life care beds
- Attendees sought clarification on the location and setup of enhanced care beds
- There was discussion on whether these beds will be centralized in one facility or spread across multiple locations
- Some attendees expressed the view that there could be issues regarding the adequacy of staffing and training for these beds.
- Respite and specialised care
- The need for dedicated respite services for patients with specialist palliative care needs was highlighted
- Assurance was provided that new enhanced care beds will support patients needing respite.
- Advanced directives and legal considerations
- Some attendees advocated for including discussions on advanced directives in public forums.
- There was recognition that this was an importance issue and crucial for end-of-life planning but that it was a legal matter and could be not considered here.
- Community engagement and feedback
- The importance of local residents' input in decision-making was emphasised
- Requests were made for clearer communication on how residents can continue participating in the consultation process.
It is important to highlight an attendee provided details of their personal experience in accessing adult community specialist palliative care services. This included:
- Frustration about the lack of services generally including respite services and the difficulty getting them
- Highlighted the need for suitable care for severely disabled patients
- Stressed the importance of having a local, non-religious hospice option
- Raised the need for accessibility and cultural competence of current services.
Frequently asked questions
1. What are the plans for locating enhanced end-of-life care beds in H&F?
- The exact locations are yet to be determined. The plan includes working with local stakeholders to identify the best sites within the borough.
2. Will the enhanced end-of-life care beds cater to severely disabled patients?
- Yes, these beds will be equipped to handle patients with severe disabilities, depending on their specific palliative care needs.
3. How will the 24/7 telephone support line function?
- The telephone support line will be available to both known and unknown patients to specialist services, offering guidance to families and healthcare professionals at any time.
4. What is the status of respite care services in Hammersmith and Fulham?
- Respite care is currently available in Hammersmith and Fulham but is always balanced with the demand for beds and needs of patients which may act as a limiting factor. However, the introduction of enhanced end-of-life care beds aims to provide more respite options for patients with palliative care needs.
5. Can residents with special needs access consultation materials?
- Yes, a summary consultation document and questionnaire easy-read documents are being prepared to ensure accessibility for individuals with special needs and have been published.
6. How can residents continue to be involved in the consultation and implementation process?
Feedback from residents has been, and continues to be, crucial in shaping these proposed services and ensuring they meet the needs of the community.
People can provide feedback in a number of ways including:
- Completing the consultation questionnaire online or via post. Paper copies can be printed, completed and sent for free to FREEPOST, HEALTHIER NORTH WEST LONDON.
- Attending a borough community involvement session for in-person discussions. These are listed here.
- You can write to us using the freepost address above or send an email to nhsnwl.endoflife@nhs.net
- Invite the programme team to speak to your group or organisation by emailing nhsnwl.endoflife@nhs.net
7. How has community feedback influenced the proposals that are being consulted on?
Since we started looking at the future of adult community specialist palliative care in 2021 we have held a lot of engagement events and conversations with local residents and we are incredibly grateful to all our patients, families and carers and wider stakeholders including our partner hospice providers, both NHS charitable and NHS, for their feedback, comments and support. We would have not got to this stage without you.
The model of care and services and support included within the consultation was developed over a twelve-month period by a working group of NW London residents with lived experience of palliative and end-of-life care, as well as bereavement, along with clinicians and providers. The group met over thirty times to systematically co-design the services and support the development of a new, improved model of care that we believe will meet the needs of NW London residents for the next five years and beyond.
An example of a service we are introducing across north west London as a result of feedback from the people we spoke to is the 46 extra enhanced end-of-life beds. We were told more needed to be done to support:
- people who were living on their own and did not have anyone to look after them
- lived in accommodation that was not suitable for providing care
- somewhere people could go for help getting back on their feet if they were struggling
- there was a need of more respite care.
Fortunately, we already had these type of beds provided by Harlington Hospice in Hillingdon and this has allowed us build on their experience, knowledge and success.
8. Will the new model consider the needs of religious and non-religious patients?
- Whilst some of our hospices had religious beginnings they now aim to deliver services and care that cater for the needs of their patients, whatever their cultural and religious needs are. In the future we wish to develop this further and do a lot training that will equip staff with the skills and knowledge to take this further.