As a carer with learning difficulties, Eve Rank describes how she has not been sufficiently supported
Iam married to Peter and became his carer in February 2005 when it was apparent that social services were not giving him enough support. I didn’t ask to be a carer, I agreed to be his wife.
I had to give up working full-time because, once, I came home from work to find Pete covered in cuts and bruises. He had gone out but hadn’t seen the traffic lights and was nearly run over. He could not see properly because he had had a haemorrhage behind his eyes, but we didn’t find this out until 20 months after his sight problems began.
Pete has problems managing his money and I am still picking up the pieces now. I found out about this two days after we got back from our honeymoon, I thought of doing a runner but that was not the answer. The answer was for me to become his main carer.
My sister-in-law was concerned about my health and what being a carer would do to me, so she contacted social services.
The things on my carer’s assessment were urgently needed but not done. I had to call a care line for Pete, something the social worker said she would do but never did.
The occupational therapist was meant to do an assessment before we moved into our bungalow. It still hadn’t been done several months after we moved in.
The social worker said I could get extra support, such as carer’s short breaks, giving me eight hours a month. They don’t give me direct payments but vouchers to get a care agency to do the work. All the agencies in our area worked with old people.
Most of them were very rude when I rang and told them Pete was registered blind and has a learning difficulty. Only one company was nice from the first phone call and this is the one we now use.
More and more people with learning difficulties are also carers. The issue is not on the government’s agenda. All you hear about are carers who have a son or daughter with a learning difficulty.
Many people with a learning difficulty who are carers don’t feel valued. I wish some social workers could spend a day doing what we do while having to fight to get services.
Early next year I am going to have an operation on my foot. It could take up to three mouths before I am able to do some of the things I now do for Pete. I phoned my social worker to ask about a carer’s direct payment but she told me I may not get one. If they don’t give me direct payments, Pete may not get fed and there is a real danger of mistakes being made.
People with learning difficulties need to have their own network, like the Family Carers Network, where people can get support.
The carers’ forums at the moment do not work for people with learning difficulties. We need our own. When people with learning difficulties talk to government or professionals at their local level about this issue we are ignored. We are having to fight just to get our voices heard and get the same rights as any other carer.
Eve Rank has learning difficulties and is a campaigner