Hammersmith & Fulham NW London community based specialist palliative care for adults 03 October 2023

We would like to say thank you to everyone who attended the event.  Their thoughts and feedback will be used as evidence as we move forward to develop the future model of care.

View the recording of the meeting

View the presentation

Jane Wheeler (NHS NW London Local Care Programme director) and Michelle Scaife (NHS NW London programme delivery manager for last phase of life and Universal Care Plan) gave a presentation on the NW London proposed new model of care for community-based specialist palliative care services for adults.

Key highlights

  • An attendee welcomed the proposed access to 24-hour palliative care advice and hospice at home services. 
  • The challenge posed by having to constantly advocate for a family member to ensure they receive the necessary EOL care and support. 
  • in the quality care received from the district nursing team/staff and hospice team/staff.
  • The need to raise awareness of CSPC services (and hospices) amongst families of patients and provide a roadmap to guide people through the complexities of end of life care. This can be overwhelming for people and the care journey needs to be made easier for patients, families and carers to navigate.
  • The need for greater support for care givers, including respite care.
  • How the community, including younger people, are involved in the development of the model of care.
  • Whether a lack of trained staff (noting a Kings Fund report stating that the percentage of trained staff in this area is decreasing rapidly) is reflected in the re-design of services proposed through the model of care. Also the need to improve training, improve retention in the face of low pay.
  • The model of care appears to lack a management structure capable of making quick decisions (through a clearly named individual) to help individuals whose care needs change toward the end of life.
  • The need to consider demographic challenges and inequalities when planning care – specifically the fact many individuals are older women, many have no caregivers, live alone or are older couples without the ability to care for each other and may live in poor conditions.
  • Whether we have optimised the workforce by having specialised staff focus on the most specialised needs, allowing less specialised staff to handle tasks that they are capable of.
  • Whether the emphasis on choice has been reduced, compared to earlier in the process, given the emphasis on keeping people at home within the presentation.
  • A number of features of the new model of care were welcomed – in particular, for Hammersmith and Fulham, the additional hours of service, the telephone service and Hospice at Home.
  • More specifics and clarity was requested on, for example: the criteria for admission to a hospice bed and enhanced end of life beds; who will own, operate/manage enhanced end of life beds; who will pay for the beds and how this care will fit with other NHS services.
  • How the importance of place and location of services will be addressed in the model of care?
  • It was noted that Hospice at Home is only available in the final weeks of life and is therefore not long term support.
  • The need to provide further information on workforce and training.
  • Whether training focused on the technical side of dealing with palliative care, or the social side (talking to patients and families) or both.
  • Whether more information can be published on services that are or are not working currently and what this means in terms of gaps in community services.
  • What plans there are to fill vacancies, retain people and decide on training needs.
  • What the timeframe from rolling out the model of care is.
  • Which patients will be supported by these proposed changes and will the care be provided by staff medically trained in EOL care.
  • Whether proposed changes to EOL care can be communicated through GP practices.
  • The need to treat patients with respect and listen to them (not speak over or belittle).
  • Hammersmith and Fulham ICS’s work to create a directory of contacts for EOL care to assist patients and carers.
  • How to ensure patients and families/carers are aware of Universal Care Plans.

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