National Carers Week is an annual campaign to raise awareness of caring and highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.
Helen Kemp is a founder member of Access Thanet, a disability campaign group. This is Helen’s view of what it’s like to be a carer. Her eighteen year old son has muscular dystrophy and uses a powered wheelchair.
Personally, I’m not keen on “weeks” for anything – caring and disability are too important to celebrated for one week and neglected for the rest of the year.
In terms of being a carer, I am one of the relatively lucky ones. My son likes going out and is sociable, so I do get out. But imagine if you’re caring for someone who isn’t sociable, and maybe dribbles or can’t lift their head and people stare or perhaps laugh.
Imagine how isolating that experience is.
If people with disabilities aren’t seen to be socially welcome in our towns and communities all year round then the people who help them will become increasingly isolated.
The nightmare of access
The basics are important: lifts need to be working, ramps in place, beach walkways swept regularly etc etc.
I always have to check about wheelchair access and how easy parking is. We went for a birthday party recently in a pub and I’d not been there before. I rang and they promised everything was OK: they had a ramp, they’d reserved us a parking space.
All the way there I worried about it and when we arrived we found the accessible entrance wasn’t labelled so we went to the wrong door. At the right door, the ramp was one of those scary wobbly temporary ones. And they hadn’t reserved a parking space. When we came out someone had parked right at the back of my van so I couldn’t get the wheel chair in.
You have to think about every detail all the time!
It’s an anathema to me that people with disabilities and their carers still have to rely on charities for support because the statutory agencies don’t offer full support. I’m talking about practical stuff like beds, wheelchairs, home adaptations etc.
When you see press coverage of people fundraising to help a disabled person I always think: Why didn’t the press cover what that person was legally entitled to? We live in a society where people still need educating about their rights!
Currently the NHS and social services are under so much strain that now more than ever parents and carers have to take the lead in ensuring that young people with disabilities get any help at all. If I just relied on GPs and other professionals referring my son for appropriate support he wouldn’t get 80% of what he’s entitled to. Parents and carers who want the best have to lead the professionals on intervention.
If you’re not a good communicator yourself, you can flounder! And that will affect simple things like whether you get a decent wheelchair or a proper bed.
We all criticise ourselves a great deal if we rely on people outside our families to support us – but without that support we may face terrible problems.
It comes down to knowing what you’re entitled to and fighting to get it. And then fighting for the people who are less pushy and less articulate than you. But the care system should be transparent and generous. We’re not a poor country. What better use is there for our wealth than caring for the disabled and proper funding for the people who care for them?