We have consulted with many of our members who provide care for a loved one. We have asked what practical mechanisms we can introduce to make life easier and what, aside from our support groups and specialist nurse helpline, can help to further reduce isolation. They have spoken of a desire for us to increase awareness, provide better local knowledge and give practical training. We therefore aim to increase support through each stage of the MSA journey, including:
- a carers’ guide specific to MSA symptom management
- physical training sessions and webinars on practical help such as preparing meals for someone with a reduced ability to swallow, and turning someone in bed
- guidance for extended family and friends who wish to help with respite care
- peer to peer support services that increase our current local group network
- counselling support for end of life decisions
This project is a huge undertaking and will cost the Trust £18,000 in year one alone.
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