We would like to say thank you to Hounslow BBP Patient and Public Engagement Committee for inviting us to give an update on the programme.
Click here to view the presentation.
Attendees raisied the following main points:
- Concern expressed that this was not an engagement and that we were informing them and had not attended the end of life steering group in Hounslow
- Concern expressed about a disconnect about what was happening at a NW London and a local Hounslow level and requested confirmation that Meadow House and Marie Curie were involved. We confirmed we were happy to attend the end-of-life steering group and were able to confirm that both are members of the NW London CSPC steering group.
- Wanted clarity on whether this was a funded programme or whether we were identifying the variations of palliative care within NW London and trying to get a consistent model care which you then have to go through the governance and then try and find some money for or is this a funded program? We explain at the start of the programme that there was a pot of money which we use to fund existing services and that would be there in the future. In terms of future funding, we would have to develop the options and then we would have to look at affordability as that will be one of the criteria we look at when we are developing options.
- There is still a concern that there is a lack of awareness of palliative care services and the criteria for getting access to them. This is particularly worrying for people with long-term conditions such as dementia where people can die slowly. Also the link with general palliative care services. We explained that the majority of people do not need specialist palliative care. Notwithstanding that that the criteria for accessing a specialist palliative care should be clear should be clear and the point made around long-term conditions and people with dementia is that point that's been raised many times throughout this engagement process. So much so that we are carrying out a literature review on dementia.