photo of Paul and Leslie

'Our quality of life went out the window'

Paul is 72 and the primary carer for his wife Lesley who has progressive MS. They tried paid care three years ago but it wasn't a good experience. So now Paul looks after Lesley's needs alone.

"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.

In September 2018, we were pleased the Government listened to our calls to include working age adults in their promised public consultation on social care - known as a Green Paper. But this consultation has now been delayed six times. The Care Minister Caroline Dinenage says these delays are partly because Brexit is taking centre stage.

Ending the care crisis can’t wait any longer. We’re working with 80 other charities under the Care and Support Alliance to push for urgent funding and a long term solution for social care.

We're louder when we speak up together.

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