Parkinson's: Benefit removal 'worst feeling' of woman's life

Lynsey Thomas was diagnosed with Parkinson's at the age of 35

A woman with early-onset Parkinson's disease said having a benefit payment removed was the worst feeling of her life and left her "really depressed".

Lynsey Thomas, 42, had been given the personal independence payment (PIP) shortly after she was diagnosed at 35.

But the £335 monthly payment was removed after a reassessment last year.

The Department for Work and Pensions (DWP) said it was committed to "ensuring people get all the support they are entitled to."

Lynsey, who lives in Bridgend, spent months trying to get her PIP back and it was ultimately reinstated and backdated at a tribunal in November 2020.

There are now calls for people with Parkinson's to be given permanent awards that cannot be downgraded, because the condition is degenerative.

Charity Parkinson's UK Cymru said there was "little evidence" the DWP's 2018 move to 10-year awards and "light touch" reassessments for people with "the most severe" conditions had a positive impact.

What is PIP?

PIP began replacing Disability Living Allowance in 2013.

It is meant to help people with "extra costs" associated with a long-term physical or mental health condition or disability.

There are two parts to the benefit: A daily living allowance and a mobility allowance, with upper and lower rates for each.

The lowest award is worth £23.70 per week and the highest is £152.15.

Lynsey told Wales Live she got a letter in April 2020 saying her PIP was being taken away completely after she had applied for an increase to a higher rate as her symptoms were getting worse.

"I was totally shocked and I was really upset and confused and just couldn't believe it really," she said.

"I felt like they were trying to say they didn't believe anything I'd said in the assessment.

"I had to be put on lots of different medications for insomnia and depression and my Parkinson's itself got worse so I had to get different medications on top of what I already was prescribed.

"I just felt really depressed and fed up and with lockdown happening everything was taking longer and I felt just the worst I've ever felt in my life, really."

Lynsey and Paul Thomas before her diagnosis

Lynsey, who had trained to be a childcare assistant before her Parkinson's emerged, said losing £335 a month left her and her husband reliant on his income.

"It took away my independence really, which is obviously what it's supposed to help with.

"I felt isolated and, not that I was made to feel a burden, but you feel in yourself that you are.

"You rely on that bit of extra money to make life a bit easier so it wasn't the best of times."

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She feels the assessment that led to the removal of her PIP was inadequate.

"The assessment is so basic. They're not assessing people on their everyday life so they can't possibly know what you're going through.

"A consultant has diagnosed you with Parkinson's and yet they can take one look at you and say 'there's nothing wrong with you'.

"The assessor even said I didn't have depression because I didn't look depressed. I found that so insulting.

"The assessor said I had nothing wrong with my knee because I walked across the room, which was three steps. It's completely unacceptable how they assess it."

Her new PIP award will run until March 2025, so a new reassessment process is due to begin in 2024.

"It's really daunting. You think because it's happened before they might take it off you again."

'Stress and anxiety'

Parkinson's UK Cymru's Wales policy manager, Rachel Williams, said: "Parkinson's is a long-term progressive neurological condition that gets worse over time.

"Subjecting people with Parkinson's to the stress and anxiety and uncertainty of repeated reviews as a part of this flawed process is nonsensical and a waste of government money.

"There seems to be a distinct lack of awareness that Parkinson's is progressive and currently no treatments can effectively stop or reverse its effects so people with Parkinson's should never be downgraded from their previous award level."

A spokeswoman for the DWP said: "We are committed to ensuring people get all the support they are entitled to.

"Those on PIP at the highest level of support and whose needs will not change, or unfortunately may get worse, can receive ongoing awards with a light touch review every 10 years.

"Reviews ensure that payments match the current needs of a claimant's condition."

• Wales Live, 22:35 BST on 2 June on BBC One Wales, and on BBC iPlayer