Kate Matlow volunteers for Relative Respite - a carers-led group for disabled people
When my son Jake was 12 he hit his head in a swimming pool and his life changed for ever.
He was left permanently brain damaged with much of his physical mobility impaired too.
At first we didn’t know where to turn for support. NHS services are complicated and difficult to navigate – we didn’t even know what benefits we were due, if any.
Then our local doctor told us about Relative Respite – a support group for parents and carers looking after loved ones with a disability in Fife.
Discovering the group was an incredible relief. For the first two years of Jake's accident my husband and I struggled pretty much alone.
It meant we had to be on hand to provide 24 hour care. I left my job as a finance officer and we took a big hit financially.
After two years we were both physically exhausted. I went to the doctor more out of desperation than anything else but it ended up the best move I ever made as he signposted me to places that could help and offer support.
When I joined the group I realised, for the first time, there were people just like us: families struggling to cope with a child’s disability.
Not only that, the group was able to signpost approved services for respite – something we didn’t know existed.
Since joining the group a new world of opportunities have opened up.
Since joining the group a new world of opportunities has opened up.
There are over 50 families involved. On a practical level, group members support each other with respite. It’s a short-term facility, like a babysitter. We are all Disclosure checked and, if a couple want to go to the cinema for example, they are able to get a trusted member of the group to look after their child or relative.
Advice is also another positive. People are able to share their knowledge and experience at the various meetings we have throughout the month. I found this especially helpful when I first got involved. Everything from what benefits to apply for and application form help. We even run workshops on dealing with NHS services.
We also arrange outings. Caring for a disabled relative often means days out are few and far between so we regularly arrange group outings.
We have use of a Variety Club minibus which is an absolute godsend. In summer we head to the coast but we also go outings in the winter on shopping trips and occasionally to the theatre.
Access can be an issue – especially when you are a group but we are usually able to overcome these.
I’ve taken on the role as group organiser. I enjoy coming up with increasingly innovative outings though I also run the respite calendar which is essentially a rota. This can be quite a task, fitting people onto the rota and checking when people are available.
The most satisfying part is we manage the group ourselves, rely on no funding and we all get on really well.
We’ve never sought charity status because we’d be subjected to too many checks and balances. It’s hard enough running a small group without having to jump through hoops for regulators.
I’d implore everyone who is a carer to joing a group like ours. And if there isn't one in your area - create it!