Bristol Health Partners Health Integration Teams (HITs) ran an event in April for ‘informal’ carers who provide substantial, unpaid care and support for family members or friends. The event was led by the Dementia HIT, supported by the Parkinson's and Other Movement Disorders (MOVE), Stroke, Active Older People (APPHLE) and Bristol Bones and Joints HITs. It was run in conjunction with Bristol and South Gloucestershire Carers Support Centre at the Vassall Centre, Fishponds.
The event aimed to provide information for families to support them in their caring roles and to find out from them how HITs can better support carers through collaboration in the future.
Participants at the event particularly valued the opportunity to share their experiences with other people in similar situations to themselves. It is clear from their feedback that caring can be a hard, lonely and unexpected role. It can be challenging and frustrating and some families feel ill-equipped to cope, both to deal with physical aspects of a person’s condition and with the emotional burden of reducing life-opportunities.
The audience enjoyed hearing from Anndeloris Chacon (Bristol Black Carers) and Karen Sargent, who cares for her mother who has dementia. They empathised with the challenges Anndeloris and Karen described and welcomed their suggestions for ways in which carers could ‘look after themselves’.
This latter theme – the need for carers to be properly supported – threaded though much of the subsequent discussion. People felt that health professionals could do more to improve communication and understanding, and to improve both patients’ and carers’ journeys through care pathways.
Encouragingly, most people said that they wanted more events like this in future and to be involved in one or more of the HITs. They felt that two-way information flows are vital and that these should be achieved through attending meetings and events, online and postal communications.
Caroline McAleese from the Carers Support Centre said:
"There was a lovely buzz at the Vassall Centre, as carers had a chance to offer each other some solutions to some of the barriers they had faced as carers. As stallholders, we met a few carers who didn’t yet know about our services, and we were able to link them up to support. The talks were interesting, and discussions lively. Thanks to Bristol Health Partners and the carer representatives involved in the planning committee, for putting on the event."
Gill Roberts, Regional Manager for Alive! Activities, said:
"It was good to see so many people attending the event. It provided carers with a valuable opportunity to share experiences and knowledge, and brought them together with a wide range of health and social care providers and voluntary organisations. Both carers and professionals were generous in what and how they shared. It was a humbling and inspiring morning."
Holly Lewis, Dementia Support Manager for the Bristol Dementia Wellbeing Service, said:
"We were very busy on the stall with lots of leaflets and books given out and people coming to talk to us. The table discussions were interesting. We met a service user who said that she finds the service particularly helpful for ideas to manage the dementia, access support and she was always happy to phone the service if she needed any guidance."
We are currently collating comments from the many feedback forms and flipchart sheets to:
We will circulate the results back to participants as soon as this is done and will invite people to help us take priority themes forward.
We would like to particularly thank the organisations who worked with us to plan and run this event: