Photo of Pam with lap top

'I want a say in my care'

Pam is 50, lives in Liverpool and has primary progressive MS.

“Five years ago I had an operation and was sent home with a care package. I have had a care package ever since. I have two carers each morning and evening now.

Carers are coming later and later

I work four days a week in an accounts department for a hotel. The carers used to be very good about coming on time in the mornings, but now they are coming later and later, when they know I need to go be up for work.

Meanwhile my evening calls are getting earlier and earlier, which is not ideal either. They used to come between 9.30 and 9pm, but it’s more like 7.30pm now.

Training is another issue. I recently had another operation and have a stoma bag now. When I came home from hospital, my carers didn’t have the training to change the bag and I can’t change it myself.

I still have a life

I would like a bit more of a say in the care I receive. I know I am not going to be able to have my calls at exactly when I want them, but more flexibility would be ideal. I think I am younger than a lot of people the carers see, a lot are bed bound, but at the end of the day I still have a life as well.

I don’t want to put my nighty on at 7.30pm at night, especially in the summer."

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.