'I haven’t had a day off in 16 months’ says unpaid full-time carer from Bristol
A woman from Bristol is calling for more be done to support unpaid carers after her financial support was cut while caring full-time for her husband.
Dorothy Cook, from Knowle, gave up running her own business six years ago to look after Melvin, 77, who has a degenerative brain disease known as ataxia.
But after his NHS care package was stopped, Dorothy told ITV News West Country she has not had a day off in sixteen months and is worried her own health is being impacted.
A spokesperson for the Bristol, North Somerset and South Gloucestershire ICB said it has to make funding decisions based on “a nationally set framework”.
Dorothy said: “I get nothing, I get nothing. Marvin gets disability allowance, but all our care packages funding was removed.
"I haven't had a day off in sixteen months because they took the funding for any respite. I thought unpaid carers were supposed to get respite. I haven't.”
Melvin was an electrical engineer who helped design concorde. He loved travelling and the outdoors, but in his fifties he started to lose his balance on walks and on bike rides.
It took several years to get a diagnosis of the rare brain disease ataxia. More than a decade later he is bed-bound, struggles with his speech and relies on Dorothy for everything.
Dorothy said: “For him the hardest part is watching me have to do it all as his carer because he feels guilty, he feels upset, because he knows that he's totally reliant on me. And without me there would be nobody else to care for him.”
Dorothy told ITV News West Country she is angry with the lack of support available and says caring for her husband has had a “massive impact” on their financial situation.
Carer’s UK now estimates 1.2 million carers are in poverty. They said Dorothy’s lack of support is not unusual.
Emily Holzhausen, CBE, Director of Policy and Public Affairs at Carers UK, said: “It's a real false economy if we don't support carers because they end up with their own health issues and are more likely to be in poor health than people who are not caring.
“So it really makes economic sense, and a very strong moral sense, to ensure that carers and their families are well-supported.”
A spokesperson for the Bristol, North Somerset and South Gloucestershire ICB said: “We are unable to comment on individual cases but understand the challenges and uncertainty people face when they experience a change in funding eligibility.
"In making these decisions we follow a nationally set framework alongside a locally agreed policy for the application of continuing healthcare funding.
“When an individual no longer meets the eligibility criteria for care and support under the framework, the ICB works closely with local authorities to ensure local people receive the most appropriate support they need.”