NW London community-based specialist palliative care for adults: next steps - 7 September

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

Key highlights

  • Attendees welcomed the work done on the model of care and the involvement of residents
  • Need to develop the support provided to care homes by community specialist and generalist palliative care teams (including community nursing, general practice.
  • Need to look at duplications across all services caused by crossover in provision/providers of services.
  • An attendee questioned the presentation of figures on increased travel times for NW London boroughs caused by Pembridge in-patient unit closure (when a number of boroughs these do not access Pembridge).
  • What shape the enhanced end of life bed units would take, i.e. a unit within a care home or providing enhanced care to whichever bed may be vacant
  • Whether new staff would be recruited to service the enhanced beds or whether existing community teams would provide these services
  • The importance of taking into consideration people from diverse communities and with specific cultural needs when designing/planning care in the home
  • How to improve co-ordination in appointments to see healthcare professionals for people with multiple health needs living with chronic conditions.
  • The need to get to a stage in NW London where no patient, family member or friend are in the desperate situation scrabbling around to find a resource that they did not know how to find – navigation and communication needs to be one of the key aims underlying the model of care work (and this was clear from the model of care working group discussions).
  • The need to deliver a culturally competent service reflective of NW London’s diversity.
  • How the impressive work between the different services, hospices and other providers in the creation of the model of care (and particularly through the working group) can be built upon and enhanced as the model of care is delivered
  • How we can move away from the ethos or expectation that everybody needs a hospice bed to build other kinds of care and support services that better support needs
  • The recognition that a hospice bed is seen as essential by those who require care but live on their own in poor conditions (e.g. state of disrepair of some private tenancies, fuel poverty, inability to buy food or essential items) 
  • The need to improve overall access to lymphoedema services across NW London and support the specialist recruitment needed to provide this
  • Whether a decision had been made on re-opening or any potential final closure of the Pembridge in-patient bed unit
  • The importance of encouraging residents and families to have conversations about dying and palliative care and increase the number of residents with an electronic care record through engagement with residents and GP services 
  • The difficulty faced by those residents whose first language is not English and the fact that the first place such people may turn to are faith groups and charities (so how can we support this)
  • The strong shared ethos amongst providers (e.g. hospices) of specialist palliative care services.
  • The difficulty posed by differences between providers in employment terms and conditions and the effect this has on recruitment 
  • The importance of helping and imparting knowledge to non-specialist practitioners in all the various fields that are covered within the model of care services through, for example, training and good practice sharing.
  • The arbitrary limits placed on care within lymphoedema services (for example, limited/set number of massages, when patient need requires more).
  • The need to consider other models of service coordination to improve access to palliative care services (e.g. West London Trust urgent care response team signposting 11 calls for rapid care to the appropriate borough).
  • The challenge posed by high rates of digital exclusion amongst older people living alone – these people can have little idea of the services available to them and are also experiencing long delays in seeing their own GP. More needs to be done on this, particularly for older women from different ethnic communities and backgrounds.
  • Whether the use of emergency pendants, connected by BT through home phone, is affected by telephone lines switching to Wi-Fi.

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