When Emily Pomroy-Smith was eight years old, she would pretend her father had been taken over by a monster as a way to cope with manic episodes he experienced as a result of his bipolar disorder. It helped to separate the illness from the man, she said.
Now 37, Ms Pomroy-Smith is a campaigner for Disability Labour, a group affiliated with the Labour Party. She is disabled herself, suffering from Ehlers-Danlos (EDS), Postural Orthostatic Tachycardia (POTS) and Mast Cell Activation (MCAS) syndromes.
Her father, Keith Passingham, 67, lives in Hackney, east London, and is reliant on personal independence payments (PIP).
Ministers have shelved plans to restrict eligibility for the disability benefit after a Labour backbench rebellion, with any changes only coming after a review of PIP in the autumn.
But for Mr Passingham, who was medically retired as a result of his bipolar disorder at the age of 40, and his daughter, any possible future cuts remain a concern.
During the manic episodes her father has, Ms Pomroy-Smith said she can receive 100 calls a day.
Mr Passingham will have trouble sleeping or eating properly, drinks heavily, is quick to anger and has previously racked up huge debts during these episodes, she said.
Emily Pomroy-Smith, aged two, with her father Keith Passingham (right) (Photo: Emily Pomroy-Smith)Despite receiving the highest level of PIP, he still needs help from a support network, including his daughter, her sibling Theo, carers and a lodger, who had to call an ambulance during a recent manic episode.
“If he didn’t have the support network that he has, either he’d be homeless or dead,” Ms Pomroy-Smith said. “That’s the whole point of PIP.”
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At 20, she left university to be her father’s live-in carer. Children under the age of 18 are classed as young carers, with councils obliged to assess their needs, but Ms Pomroy-Smith was frustrated with the lack of support she could access.
“I dropped out of university when I first became responsible for him, because working, keeping a roof over our heads while doing a degree was just too much, and something had to give. And that has absolutely had huge consequences for the rest of my life in terms of my earning capabilities,” she said.
“The thing that frustrated me was that when I lived with him, I wasn’t entitled to carers allowance because I was working too many hours and yet I was responsible for him 24/7.”
Emily Pomroy-Smith, aged 11, with her father Keith Passingham, who suffers from bipolar disorder and was medically retired because of it at the age of 40 (Photo: Emily Pomroy-Smith)The manic episodes that define Mr Passingham’s condition are often triggered by sudden changes in his life, his daughter explained.
But he has twice been refused benefits. The first time he lost his payments was in 2013, when Mr Passingham was moved from receiving disability living allowance (DLA) to PIP.
He failed to fill out his application form on time, and it took over a year to get a new assessment. The shock of losing his benefits sent him into a manic episode that resulted in him being sectioned, Ms Pomroy-Smith said.
The second time, in 2019, his PIP was refused after reassessment, when claimants are reviewed to determine if they still meet the eligibility criteria to claim PIP.
In the report of his claim, his assessor had stated that he could walk unaided and drink on his own, both claims that his family disputed.
Emily Pomroy-Smith on her wedding day with her father Keith Passingham. She left university to be her father’s live-in carer when she was 20 years old (Photo: Emily Pomroy-Smith)“We genuinely thought there’d been a mix-up because when we read it, the assessor referenced having done a physical examination – she hadn’t got out of her chair,” Ms Pomroy-Smith said.
“She said my dad was able to drink on his own – he has lithium-induced shakes similar to Parkinson’s. He cannot hold a glass of water, so he’s not able to drink without supervision and support, and he has to use straws and covered cups.
“And she claimed that he walked into the room unaided. He had actually walked in with my brother supporting him.”
His PIP was reinstated after just three months after his children challenged the decision.
Keith Passingham with his grandson Logan (Photo: Emily Pomroy-Smith)Ms Pomroy-Smith said she was frustrated with the Government’s proposed welfare reforms.
She believed the bill should have been thrown out.
“There needs to be a real rollback; we need to go back to the drawing board,” she said.
A Department for Work and Pensions spokesperson said the Government is delivering “one of the biggest and most ambitious packages of welfare reforms in a generation – to put the system on a sustainable footing and ensure the safety net will always be there for those who need it”.
“We are putting disabled people at the heart of a ministerial review of the PIP assessment to make sure it is fit and fair for the future, and we will work with them and key organisations representing them to consider how best to do this,” they added.
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