'Our quality of life went out the window'
"Lesley is quadriplegic and I am her full time carer. We had paid carers about three years ago, but it was such a horrible experience that in the end we decided to cope on our own.
We didn't know when care would arrive
"In the morning we didn’t know when they were coming, it was unpredictable. Then they would come at 7pm in the evening to put her to bed. We would be sitting down watching television together and they’d turn up. Our quality of life went out the window.
"The carers were there to do a job and they got on and did it, but the empathy wasn’t there. I did feel sorry for the carers. They weren't paid travelling time or expenses, yet they were hounded from pillar to post. But ultimately, I felt sorry for Lesley, because the quality of care was not good.
The big problem will be if something happens to me
"When I am ill Lesley just has to stay in bed until I am able to help her. It would be lovely to have carers to help at those times. The big problem will be if something happens to me.
"Without me, she couldn’t cope at home. It sounds weird, but we are happy at the moment. The blessing is that she has all of her mental faculties. That is very important to me as her carer, because we can still chat and laugh."
We're keeping the pressure up
Paul and Lesley’s story shows that unless care is person centred and of high quality, it doesn’t work. It's is not right that Paul has to struggle to look after his wife’s basic needs on his own. You can read more about them in our report.
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.