David was diagnosed with MS in 1996. He used to have a good social care package, but had to contribute a lot more after being financially reassessed in 2010. He put a stop to his care because of the stress caused by the financial burden.
“I remember being discharged from hospital and a social worker visiting me the same day to talk about support I needed. He spent the time to understand what was important to me. It was quickly agreed that I would get six hours a week help at home with the domestic tasks I struggled with, cleaning and making meals.
For many years everything worked seamlessly.
Panic attacks in the night
Things changed in 2010. I was financially reassessed again and told to contribute £48 a week – a massive jump from what I was paying before. I challenged the local authority, but I was getting so worried thinking what was I going to do.
It got so bad, I would wake in the night with panic attacks. They started billing me the higher amount and the debt was building up. It got to the stage where I put a stop to my own care to make the stress go away.
Fatigue is my biggest demon
From that point on, I just struggled alone. Fatigue is my biggest demon to cope with. One of my former carers and friend kindly comes round one a week, does some hoovering and ironing.
My worry is there will come a point where for whatever reason she will no longer be able to do it for me."
We're keeping the pressure up
Together, we’ve reached 90% of all MPs in England with our emails about the care crisis and many have signed the joint Care and Support Alliance petition calling on the Government to publish its plans to reform social care.
In November 2017, the Government announced it will publish a Green Paper on the future of social care for older people next summer. It will also take forward a parallel programme of work which will focus on working age adults.
We’re pleased the Government has acknowledged the need to look at social care for younger disabled people but we now need to work hard to make sure that the voices of people with MS are heard as proposals are developed.