Agenda item

This report sets out details of the North West London Integrated Care System (NWL ICS) ongoing review of the Community-based specialist palliative care (CSPC) services for Adults (18+) across eight NWL boroughs. It continues the palliative care review work undertaken in 2019/20 across Brent, West London, Central London and Hammersmith & Fulham CCGs.

Councillor Natalia Perez welcomed colleagues from North West London Integrated Care System (NWL ICS).  These included:  Janet Cree; Robin Doran (who described her personal and professional experience and background as a carer and nurse, respectively); Phillipa Johnson, director, H&F borough-based partnership (previously a pharmacist); Andrew Pike, a communications lead for the NWL ICS; Sue Roostan; Michelle Scaife, delivery manager for the last phase of life program supporting with the delivery and transformation work on the review (an occupational therapist by background); and Chaksu Sharma, a programme manager for integration and delivery work in the borough, supporting the end-of-life engagement work. Contributions from co-optee Jim Grealy and Merril Hammer, from HaFSON to the engagement process on end-of-life care were commended for their invaluable input and support of this work.

Sue Roostan outlined the NWL ICS intention to ensure that the provision of specialist palliative care services for H&F residents, patients and family carers was improved.  A wider, NWL wide steering group had been established which included NHS providers, hospices, local authorities, and residents.  An issues paper published in November 2021 set out key reasons for the need to review the provision and integral to this was a conversation about future services.  An interim engagement outcome report had also been published setting out the feedback received to date locally in H&F.  Early engagement with local communities had allowed Chaksu Sharma and the borough team to work closely with lay partners and stakeholders such as HaFSON to design engagement materials. Early engagement with residents offered opportunities to work together to identify what matters to residents and how changes can be implemented to reflect this.  Listening events had been well attended and agreement obtained to extend the scope of the engagement. 

Robin Doran described the role of the model of care working group whose membership comprised of several stakeholders to help develop a framework and action plan to deliver high quality community-based specialist palliative which was sustainable across the whole of northwest London.  Input was being included from across the 8 London boroughs to reflect the patient voice from different communities, particularly those with protected characteristics.

Co-optee Keith Mallinson shared his personal experience of bereavement and commended the work of the Royal Trinity hospice who had provided support and assurance throughout.  It was important to sustain continuity of care and district nurse visits were an important part of ensuring consistent services.

Councillor Amanda Lloyd-Harris commented that four years had passed since the in-care patient service at Pembridge had been suspended. Councillor Lloyd-Harris sought an update about the lack of progress and the impact on residents, some of whom would need to travel out of the borough to visit terminally ill loved ones in hospices located out of the area.  Phillipa Johnson acknowledged that there had been a delay and explained that there had been continued attempts to recruit specialist staff since 2018 but a suitably qualified and experienced palliative lead consultant had not been identified. Councillor Patricia Quigley commented that families and friends of those require palliative care services need to be supported and it was acknowledged that a good example of this work was with carers in Hillingdon who were given the option of training and support in administering medication.

ACTION: Phillipa Johnson to contact Councillor Quigley following the meeting to discuss her suggestion about how carers could be empowered to care for loved ones needing end of life care and support.

Co-optee Jim Grealy outlined his positive experience of engaging with NHS colleagues throughout the engagement work and commended the outstanding work of Robyn Doran and colleagues. There was a significant, national shortage of qualified palliative care specialists and palliative care services were not unique in this respect.  The wish to die at home was one that should be effectively facilitated where appropriate.  A consequence of the lack of experienced staff at all levels was having untrained carers taking care of loved ones.  Michelle Scaife explained that the model of care working group was looking at robust data around local population need and aimed to map out the workforce need.   It was noted that the timeframe for future engagement and potential consultation (if there was significant variation in service, this would lead to formal consultation) was to be determined but recent engagement to date had evidenced genuine co-production which was welcomed.  Funding for the Pembridge hospice was ringfenced and was being used to support the re-provisioning of other units and palliative care support services.  Philippa Johnson added that Pembridge in-patient care had been suspended for a significant period and that due to the loss of service, it would take time to reinstate the service, if that was the outcome but this would only follow once there was clarity about the model of care.  

  Lisa Redfern said that the longer Pembridge in-patient care unit remained suspended, the harder it would be to re-establish the service and it was acknowledged that it had become increasingly difficult for the Pembridge community staff team to remain motivated.

Action: NWL Model of Care Working Group is gathering robust data around population need and workforce data to plan resources for high quality care and service provision, with the intention to provide this once completed, to the November PAC meeting (if ready) with regular updates to future meetings; and for Councillors Ben Coleman to be kept informed of the work, as Cabinet Member for Health and Adult Social Care.

RESOLVED

That the report was noted.