Bi borough Community Based Palliative Care Local Engagement 02 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

Jan Maniera, chair for the event, completed introductions of the group and explained that the reason for the event was to hear more about the palliative and end of life care improvement work that is happening locally in bi-borough and to discuss the NW London proposed new model of care for Adults (18+) community-based specialist palliative care services.

Dr Amit Patel (GP clinical lead for end of life care (EOLC) for bi-borough) and Helen Brewerton (Royal Trinity Hospice, head of the specialist community nursing team) gave a presentation on local bi-borough service improvement for EOLC.

This was followed by a presentation on the NW London proposed new model of care for Adults (18+) community-based specialist palliative care services by 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).

Key highlights

  • Whether the model of care is inclusive of African communities.
  • The fact end of life is a taboo subject in African communities and that many would prefer to receive end of life care at home – is this enabled/supported through the model of care?
  • Where care is voluntarily provided in the home, through for example community organisations, it can be difficult to receive culturally appropriate support that respects the patients’ language and culture, which can inadvertently add stress. An attendee questioned whether it was possible for people from African communities to be supported at home by staff with the same culture/knowledge.
  • Whether there will be investment in palliative care teams, to address needs such as development and support for district nurses and the specialist nurses needed to support palliative care services. Also will there be investment to enable responsive patient facing seven-day cover.
  • Some people don’t understand what ‘palliative’ means - staff need to ensure they use clear simple language with patients and their families to help them comprehend what is happening to them.
  • Whether the proposed model does far enough in addressing the gap between acute and community services.
  • The model of care lacks a rapid response element to respond to new crises in EOL patients - without having somebody who can physically go and review the patient and has got the capacity, competence and confidence to decide that the patient does not need hospital admission, the patient will be admitted to hospital.
  • The model of care lacks support for patients trapped in hospital who should be discharged out to community services or a hospice (due to a lack of coordination and appropriate services for discharges).
  • Whether the Universal Care Plan can be provided or viewed as a hard document (rather than just online)

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