Photo of Mike and Janet

'The nightmare is finding the right care'

Janet looks after her husband Mike who has progressive MS. They rely on respite care for any kind of break - but it's not easy to find care that works.

“Mike was diagnosed with primary progressive MS in 2001. We managed without any social care to start with and then as Mike deteriorated we tried respite care, so I could take a break. The nightmare is actually finding the right care.

They forgot to feed him

There is not even one bed suitable with people with a physical disability in our area. Last time I went away, I didn’t find out until the day before that Mike had actually got a place in the care home. The stress was just horrendous.

In the care home, Mike couldn’t eat in the dining room because his wheelchair wouldn’t fit under the tables. They even forgot to feed him. It was just a totally inappropriate place for him.

Constant fight for care and support

Mike now gets care at home. I’d like more flexibility in the system. If over a month we had even four extra hours of support we could draw on if and when we needed. It would mean I could go out during the day. I would like to go and spend the day at the seaside or have a night away with family every now and then. But there isn’t that flexibility.

If Mike or I are ill, and we need extra support for a period, there is nobody. It is a constant fight to get the level of care and support that you want, which is tiring. If I wasn’t here what would happen to Mike?"

We're keeping the pressure up

Janet and Mike shouldn't have to struggle to get the right respite care. It's vitally important that carers can take regular breaks to avoid carer breakdown. Social care should be responsive to changing needs and emergency situations, not leave unpaid carers like Janet to struggle alone. You can read more about her story 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.

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