Hounslow and Ealing Community Based Palliative Care Local Engagement event 05 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

  • The need to consider palliative care for those younger than 18.
  • Whether the model of care lacked the ambition and scope to address the challenges and changes necessary for specialist palliative care in NW London. 
  • Whether the scope of the work needed to be widened to address the integration with other services that will be required for the proposed system to work (e.g. community services, accident and emergency)
  • How the 24 helpline would integrate with existing community helpline services and address any confusion or uncertainty patients or care givers may have in accessing services.
  • Whether acute specialist palliative care had been involved in the development of the model and whether Hounslow (end of life steering group, local hospital) representatives had been involved.
  • The need to avoid creating further silos within and between the services proposed within the model of care and existing services (e.g. acute).
  • Why rapid response is missing from the model of care and how the advice line will link to providing actual support in the home and in a crisis.
  • The importance of communicating with and supporting family members of the patient through the various EOL stages and services and making this journey clear so they can input to the care received.
  • The importance of embracing and empowering family members and carers and helping them understand how to deal with practical care issue (e.g. bed sores), including carer networks and other support systems that can help carers share experiences, knowledge and best practice. 
  • Whether care plans should encompass support for family and friends as well as the patient.
  • What mechanisms are/ will be in place to gather feedback from patients, family and carers.
  • Whether process such as case conferences and weekly reviews can be made more transparent and accessible.
  • The importance of clear anchor points in the care coordination process and the supporting role that community matrons can play here.
  • The fact that patient needs and circumstances vary and that this could be articulated more in the model of care.
  • The importance of places in which patients and/or family can talk to people who’ve experienced or are experiencing palliative care, such as coffee mornings.
  • n attendee supported the intention to introduce enhanced end of life care beds to help address the need to discharge patients from hospital but where care at home is inappropriate. They questioned how challenges such as staffing, skills and delivery locations would be addressed.
  • The need for clear public information on end of life care that will allow people to quickly get up to speed (e.g. where they are unexpectedly informed a relative needs EOL care).  
  • What people should be doing to prepare for end of life (e.g. advance care planning).
  • How advice and guidance from clinical to support GPs with referrals will be delivered on the ground.
  • How we are engaging with faith organisations (e.g. Southall Faith Forum).
  • How diversity training will be monitored.
  • The potential role of volunteer care navigators in helping people get to the right services.
  • The need to bridge the skills gap in rapid response teams.
  • Could we create a basic guide to NW London end of life care in South East Asian languages as this would be particularly helpful in Hounslow.

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