Edith is 30, she was diagnosed with relapsing MS aged 16. She works full-time and receives social care for everyday essential needs. But getting the care she needs wasn't easy. “My MS started worsening about five years ago.
I moved back in with my parents and they became my full time carers, helping me every day to get dressed, get out of bed and ready work. I can’t get out of bed myself, overnight my legs really stiffen up and I can’t move them at all in the morning.
I rely on my carers to get to work
I work four days a week as an accountant, so I need a carer at 7am every morning. My carers help me get dressed, have breakfast and take my meds.
They are lovely, all individually very nice people. I have a group of familiar faces that I recognise. But it took nearly a year from the point of approaching social services to my care being in place.
I felt like I was on my own
I looked into moving into an accessible flat and getting carers. It was a very long, convoluted process. I contacted social services. The financial assessment was really stressful.
I couldn’t find any information online about whether and how much of my employment income would count. I was granted direct payments and then it felt like I was on my own.
I felt completely lost, I was phoning social services every few days and emailing my social worker asking ‘what am I meant to do?’ I was told no care agencies had availability."
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.