Hi everyone,
I’ve decided to write a free ebook available for carers/ families of major stroke survivors.
I’m based in East Suffolk, and a carer for my mum since her major stroke one year ago. Last summer, we were left high and dry following an unsafe discharge from hospital, and my mum’s been subject to what seems to be discriminatory attitudes in the NHS generally. I’ve had to fight battle after battle for her to ensure she get the basic care she needs, and against a system that seems to put little value on her quality of life.
The family has to pay for private physios, 3 carers and admin support to take care of and rehabilitate mum, because provision is so rubbish. We’re lucky we can do this at the moment, but have heard of families getting into debt paying for help.
The impact of this is massive, with the trauma being felt by the stroke survivor and across the family again and again, as I’m sure everyone here appreciates.
I’ve had to do most of the research and coordination for mum’s care/rehab, and I want to share lessons to hopefully help others. The information, organisations and people I’ve found and are giving mum what she needs are not available via on the usual websites. I’ve found them through friends, word of mouth and news articles.
Although the book’s content will be localised to this area of Suffolk, I’m going to include links to resources/organisations which have national coverage like Stroke Association, Headway, etc. Or places that accept referrals from around the country, e.g. Voyage Care in Sheffield.
If you’re happy to share some useful resources or advice please drop a comment below. Happy to credit everyone using their forum usernames for their contributions.
The e-book will be for informational purposes only. It will offer links and guidance to help carers access resources and support for loved ones recovering from massive strokes. And obviously not a replacement for expert advice.
Thank you 
