Update on community-based specialist palliative care programme

10 February 2022

Due to staff being largely redirected to support vaccination (and actually some work on Long Covid took, the decision has been taken to extend the engagement period to the middle of March 2022, when the pre-election period for the May local elections start.

An updated engagement programme is being developed based on what we have learnt from initial engagement sessions with stakeholders and further conversations we have been having with a range of stakeholders including those relating to our homeless and learning disability populations.  The key piece of feedback in both cases has been that that a lot of research has been done in this area and there is limited benefit in undertaking broad engagement events.  

Instead, the advice we have been given is that we should review this work and use this to shape what a best practice service offer for these communities could/should look like. We could then test this back firstly with professionals who support these communities and then the communities themselves. In other words, a lot of the barriers to delivering good quality palliative care are made clear from existing research, so we can use this information in our engagement report, which we then should share back with professionals and service users to check our conclusions.   

We have asked two organisations with experience of advocating on behalf of people with learning disabilities to put together proposals on how they might support us with further engagement with this community. 

We are also talking to other stakeholders and planning a further series of webinars/events designed to engender conversations with a wide range of people and groups plus some place-based borough ones including: 

  1. LGBTQ+ community 
  2. Mental health including dementia 
  3. Faith groups 
  4. Ethnic minorities 
  5. Place based events which have a borough/ICP focus 

They will be organised in collaboration with the voluntary sector organisations and supported by NW London’s ICP engagement teams and the NW London programme team. 

We will also be holding two ICS wide workshops to undertake the national Ambitions Self-Assessment for PEOLC so we can access our current areas of strength and identify areas for growth that need prioritising within future strategy.  This will have clinical, operational and patient and public involvement and we let you know when the dates are confirmed. 

We are also planning a final full panel webinar, it will be a generic event and therefore open to all to attend.  

Lastly, we are proactively reaching out to different groups and are also available for some face-to-face focus groups, for people who are unable to attend virtual webinars. 

It is expected that following each event we will write a brief report highlighting the main findings and feedback which will then be made publicly available on the NW London ICS website.

One of our commitments as part of how we work with you is that we share outputs of the community conversations and we’ve been publishing write ups on the website: https://www.nwlondonicb.nhs.uk/get-involved/cspc/how-get-involved.  We have also spent some time over the last month documenting against previous feedback, where action has or hasn’t been taken and we will publish this when complete. 

If you have further questions, please contact nhsnwlccg.endoflife@nhs.net

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