Public involvement event 18 March 2022 - Feedback session

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.

Will Dunbar-Shepherd from the review team gave a summary presentation on the first stage of engagement, key emerging themes and next steps/timeline for further actions.

View the presentation

View the recording of the meeting

The key issues raised in the discussion following the presentation were:

Pembridge Palliative Care Centre – the future of the Pembridge in-bed unit was raised and whether any decision on its future would be subject to public consultation. The review team made clear that no decisions had been made on the future of the in-bed patient unit as yet but that such a change would count as a significant service change requiring consultation.

Funding (overall) – it was confirmed that no extra funding is confirmed/expected to become available as a result of the review and it is based on existing budgets. Although if the eventual proposed model of care requires additional funding then it would likely be sought but there are no guarantees given existing financial constraints.

Funding (voluntary sector) – a question was asked about whether the sector would need to do more fund raising to support working under any new model of care. This has not been a part of any conversations to date within the review. 

Housing – a question was asked about whether the relative size and functionality/suitability of housing (in the context of end of life care at home) and rental costs of homes across NWL had been raised. Although it’s an issue that has come up in discussions, it’s not something that is within the ‘gift’ of the health service and relies on conversations and working with partner organisations.  Our role is to try and develop services which respect and enable the choices of patients and their families (whether in home, hospice or other community settings).

Contact point – it was suggested that it may be helpful to develop a reference point in each geographical community (e.g. borough) that can provide knowledge and expertise for that locality to the service and a point for people to go to for information.

Information and advice – End of life care can involve using many different service providers, which makes it very complex for the public to understand who is responsible for what and how and when to contact different providers. It would be helpful if there was improved guidance/advice and a single contact point for the public.

Progression to end of life – trying to provide more clarity to patients/families on where the patient is at as they approach end of life is important.

Advice and support to families – more needs to be done on this, both through formal advice and guidance and the supporting of groups providing forums for families and carers to meet and discuss their experiences. 

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