Public involvement event 10 March 2022 aimed at ethnic minorities – Hounslow and Ealing

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.

Attendees from Hounslow and Ealing highlighted the importance of language, culture and faith during a discussion on what was important to them about community-based specialist palliative care.

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Points raised included:

  • Attendees talked about how some elderly people from ethnic minorities do not or have difficulty speaking and understanding English. This can lead to difficulty communicating with clinicians and people taking care of them. For example, they might not understand instructions given around medications. As such, it is important that we look at how we ensure access to high quality interpretation as part of the review of community based specialist palliative care. Building on this it’s about the process of adapting language and concepts of different cultures. This could even be done with volunteers from different faiths and cultures with Chelsea and Westminster Hospital flagged as an example where this this is being developed.  There can be limitations with telephone interpretation services (e.g. language line) due to the variable quality and lack of in person interaction More use of technology could be explored e.g. online translators.
  • Many ethnic minorities do not have a word for palliative care in their own language and automatically associate this with death. In some community’s hospices care was perceived as meaning that treatment was coming to an end. The suggestion was that we need to develop a new way of describing community based palliative care depending on the audience e.g. You are seriously ill and as a result we are going to provide an additional level of support and care for you.
  • In lots of cultures people want to bring loved one’s home so they can look after them according to the traditions of their culture and faiths in their last phase of life.
  • More use of lasting power of attorney (LPA) – especially with dementia patients. A LPA is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf. This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions (you ‘lack mental capacity’).
  • Palliative care is based on a western model of care and we need to do more to take into account cultural and faith beliefs.
  • Participants identified a need to do more outreach into different communities talking in a culturally sensitive way.
  • There is a need to be more proactive than reactive in identifying people who might need community based specialist palliative care.  The assessment criteria for being accepted into community based specialist palliative care can be complex and there needs to be more flexibility. This is also the case where patients are re-assessed.
  • More needs to be done to educate and train all workforce to identify need. This should be NHS, LA and voluntary groups so they can capture and signpost potential need. A system needs to be developed to support this with child and adult protection suggested as examples.
  • More needs to be done to promote community based specialist palliative care. Leaflets and posters in GP surgeries were suggested.
  • Need to build extra capacity and extra staff to meet growing demand.

Feedback from Hounslow GP

  • Still a disconnect between hospitals and community settings.
  • End of life and palliative care services are still area based and limited by GP registration.
  • Hospital systems (Cerner) are linked to individual GPs not practices. It would be helpful it the practice could see the patient record.

Feedback from hospital consultant

  • Has experienced times where Meadow House Hospice does not have capacity to take patients
  • There are improvements which could be made around the transition into community based specialist palliative care services.

Feedback from independent domiciliary care providers

  • Need to be considered part of the community-based specialist palliative care system
  • Their staff are not treated as specialists even though they are trained staff – both nursing and domiciliary care.
  • Training needs to be given to carer organisations so they can contribute more.
  • The brokers do not give them much information so they go round hospital and GPM etc. to get it (palliative care consultant explained that when they discharge someone it takes one person the whole day as there are eight forms and each one takes 45 minutes to complete – need one from that can be used by everyone.

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