Edith with wheelchair in garden

Re-finding my normal

Edith is 30 and has MS. She is an MS Society campaigner and blogger.

What a whirlwind the past few months have been. And not the fun, rollercoaster, big waves on a beach kind. More like speeding traffic when you’ve got no seatbelt or map.

Support from carers

I’m 30, I work as an accountant and I’ve been living independently in my flat since 2016. Carers helping me in and out of bed in the mornings and evenings are the fundamental life support on which everything else depends. Over the last year, I’ve been supporting the MS Society’s End the Care Crisis campaign, but recently it got personal. The rug was almost completely pulled out from beneath me.

A letter from the care agency

In February this year, I got a letter from my care agency saying that due to staff shortages in my town, they were ending their contract and giving social services 90 days’ notice. I needed a new care agency.

I spoke to social services and was told everything was in hand. A new provider would be found for me before the May deadline. When they did get back to me however, they offered new call times that meant I couldn’t make it to work. This just confirmed to me that they had no idea, or consideration, for my needs.

As we edged closer to the 11 May deadline, things got worse. My social worker told me that if no agency could be found, I would need to move to a residential care home. They wanted me to be ‘more flexible’ with times.

Battling for support

I threw everything at this, writing to my MP, and contacting care agencies to check they definitely didn’t have availability

I spoke to journalists and my story became the focus of a Guardian article. I even went on the BBC Victoria Derbyshire show to be interviewed alongside Fredi (Policy manager) from the MS Society.

At this point my care provider gave me a week extension. I anxiously waited to find out if they could find carers. I had no idea if all my efforts would actually help. The problem felt much bigger than me.

The MS care crisis

Just two days before the new deadline, a new agency (with suitable visiting times) was found. Thanks to all for the support during this time, be it friends, charities, or journalists. We got there in the end.

Am I just supremely unlucky to have been in this situation? Or is it quietly happening all over the country? The Care & Support Alliance suggests the latter – a group of 80 charities, including the MS Society, campaigning for a properly funded care system.

I joined the MS Society End the Care Crisis campaign long before my problems started, but for now I’m planning on catching up on sleep and hopefully having some fun this summer – as I get used to my new normal.

Do you have an experience of the #CareCrisis you'd like to share for our campaign or media work? Get in touch with us at campaigns@mssociety.org.uk.

>Visit Edith's Think in Decimals blog (external link)