Oldham Cares – Eradicating the myths around End Of Life
Springboard Oldham’s dementia carers group found that people needed help to have important, but difficult, conversations about death and care needs.
Springboard Oldham, DEEP (the UK network of dementia voices) and Pennine Care NHS Foundation Trust developed a leaflet with cartoonist Tony Husband to support people to have advanced care planning conversations. People in Oldham living with dementia, their carers, and others from the national dementia voices network (DEEP), came together to develop key messages in five workshops held in summer 2019. They asked people what was working well and what needed to change. One of the main issues was when and how to have conversations around death and end of life care. By starting these conversations early, people can begin to make plans so their needs and wishes can be known – and ideally met.
As a person with dementia, I found it refreshing that we were at the heart of this process from the start. Jacqui Bingham
The leaflet was produced to:
- Be used across the whole care journey to facilitate helpful conversations about end of life care.
- Act as a conversation starter and ice breaker for people living with dementia to use with carers and or health and social care professionals
- Be a resource for health and care professionals to use along the care pathway.
The carers who attended the workshops thought it was important to discuss end of life care ( mean rating 9.5/10 for importance ). The carers reported that they were confident to do so ( 9 before and 10 after). This isn’t surprising as they opted in to the workshops. For people living with dementia they gave a mean rating of 7.6 in terms of importance to discuss it. Their confidence score increased from 7.2 at the start of the workshops to 9.4 by the end.
- People who want to talk about end of life care should be allowed time and space to do so.
- Carers were confident and saw it as important to talk about end of life care. People living with dementia were less confident but given the opportunity to discuss this their confidence went up. This is reassuring for staff who may be anxious to raise these issues with someone with a dementia.
- There was a plan for it to be part of a quality improvement initiative around next but this was interrupted by COVID-19.
- In light of COVID-19 review the leaflet with people living with dementia and carers to see if it’s still ‘fit for purpose” and if it is, share with care homes.
We will share the results from the second project as soon as they are available