CARERS CAMPAIGN TO
CARERS want the law changed to make it easier for terminally ill people to get their benefits.
Emma Terranova Davis and Catrin Roberts have started a petition to end benefits reassessments for people with degenerative illnesses.
Both have experienced looking after parents with Huntington’s disease – an incurable, progressive, terminal genetic illness that damages nerves in the brain.
They have also faced “hellish and humiliating” reassessments to get loved ones benefits from the Department of Work and Pensions. As a result they launched a petition to end the practice.
Now it has 350,000 signatures, 200,000 in the first week.
Paramedic Emma, said her mum Jenny, 62, – diagnosed in 1998 aged 40 with the condition – is in an advanced stage of Huntington’s yet has had four physical reassessments for Personal Independence Payment since it came into being in 2013.
Mum-of-one Emma, 30, of Cheltenham, Gloucs, said the stress of meetings and paperwork caused her dad Tony to have a mental breakdown.
Mocked
PIP helps with extra costs of having a disability or long-term health condition. Emma said: “Seeing someone you love with Huntington’s is hell. It affects every part of them and changes them forever, it is like the Armageddon of diseases.
Watching Mum go through that and being her carer is beyond heartbreaking and exhausting.
“Dad and I have faced a constant battle to prove to the Government that Mum is ill and will never recover. We want to ensure people with terminal conditions such as Huntington’s who won’t get better, don’t have to go through the hell our families had.”
Emma said the reassessments involving hours of paperwork and face-to-face assessments are often embarrassing for the person undergoing them.
She said: “Mum can’t hold a pen, write or use cutlery. She’s incontinent but she won’t want to admit that to the person assessing her.
“She has memory loss, obsessive behaviour, gets agitated, has severe anxiety and suicidal thoughts, involuntary movements, poor balance, often chokes on her food – the list goes on. These symptoms only worsen over time.
“The assessments are distressing and humiliating. They can involve the person being asked to hold a pan, to see if they can cook. They will ask them to stand and sit, stand on one leg and then the other, stand on tiptoe and back down.
“They will ask people to put their hands behind their back and above their head, also to bend forward. Through the assessment, informal observations go on, which go towards their case for the benefits they are entitled to. “Many disabled people do not have help to go through these processes, and feel mocked by the assessments.
“In 2016 the situation got to my dad Tony so badly he spent three weeks in bed with depression. He couldn’t help mum do the forms any more. So now I do them all and they’re really complicated. Some are 40 pages long.”
Emma and Catrin, who cared for her dad Dewi for nine years until his death from the condition in 2014, are calling for support for life for people with terminal and progressive neurological conditions. Their Campaign for my Brain petition highlights how thousands of people face degrading questions and piles of paperwork to get benefits. Catrin, now 35, left university at 22 and cared for her dad. She said: “This was all heartbreaking and stressful but it was compounded by the constant fight