MS sufferer describes the ‘dehumanising’ process of reapplying for disability benefits

A multiple sclerosis sufferer has described the “dehumanising” process of being re-assessed for disability benefits six years after being granted lifetime support.

When mother-of-one Barbara Stensland was diagnosed with MS she was told she would receive a disability living allowance for life.

Now six years later the 44-year-old has described the “inhumane” process of “proving” what she can’t do after receiving a letter in October to say she must be reassessed.

Diagnosed in 2012, Barbara originally went to bed in her Cardiff home as normal but woke the next day unable to talk properly or walk properly.

When she took herself to hospital, the first thought was that she was having a stroke.

‘If you don’t laugh you cry when you trip over or when you drop another glass’: How being diagnosed with MS prompted an inspirational blog

As one of 100,000 people in the UK with the condition, Barbara is one of thousands applying for a personal independence payment (PIP) to allow her to support herself alongside her work.

Barbara said: “The hardest part apart from the financial implications is that we build ourselves up after diagnosis and with the process of PIP assessments you need to write down anything you can’t do.

“It’s a uniquely depressing process. You literally have to break yourself into little pieces and that’s opposite to what we do, we just pick ourselves up as best we can.

“The process is completely inhumane. It’s dehumanising and vicious.”

Barbara’s assessment follows weeks after the government’s announcement on January 30 that 1.6 million disability benefit claims will be reassessed after criticism over “distrust” in the PIP system.

On Wednesday, MPs on the House of Commons Work and Pensions Committee warned there was evidence that the companies carrying out assessments -– Atos, Capita and Maximus – have produced reports “riddled with errors and omissions

The government has announced it will review 1.6 million disability benefit claims (Image: PA)
Barbara, who will receive the decision about her PIP application in six weeks, said: “The government gave me that allowance and has now taken it off. MS is incurable.

“I get people do need to be reassessed over a period of years but what I don’t agree with is doing that to people with Parkinson’s or MS or all those conditions which are incurable.

“MS is progressive, it’s a fluctuating condition which is really important.”

Barbara, who runs her own inspirational MS blog about living with the condition, added: “They send you these forms and it’s like 15 essays about how awful my life is. It took me all through Christmas and I had a lot of help from people that others don’t always have.

“The woman doing the assessment came to my house and it was 55 minutes of constant questions. She would ask one question in one way and a little bit after she would ask the same question in a different manner.

“With the cognitive problems I have and I had my mother there and it wasn’t pleasant for her.”

Barbara has published a book about living with MS (Image: Western Mail)
Barbara’s diagnosis comes after her father died at the condition at the age of 35 in 1978.

She said: “After I was diagnosed I had two years of absolute hell – I had a two year pity party. That’s life and it could be worse but to have to prove to the government that I have MS is hard mentally.

“Now my son has gone to university I have more time to think.”

Through documenting her journey online and through her blog Barbara has been contacted by countless other MS sufferers in the same situation.

She said: “People can’t see the pain or the chronic fatigue – so many people can’t see what the problem is.

“I thought the assessment went quite well but others who have had it have warned me not to celebrate too early.”

A spokeswoman for the Department of Work and Pensions said: “Assessments are a necessary part of the benefits system, and 76% of PIP claimants tell us that they’re happy with their overall experience.

“We recognise symptoms of Multiple Sclerosis can fluctuate over time, and regular reassessments mean we can ensure people with degenerative conditions get the help they need as their condition changes.

“Decisions for PIP are made after careful consideration of all the evidence provided by the claimant, including supporting evidence from their GP or medical specialist.

“Under PIP, 29% of claimants receive the highest rate of support compared to 15% under DLA, and anyone who disagrees with a decision can appeal.”


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1 Comment

  1. So true. I am in Midwest of a major relaspe after my dad’s death. Was given a review at home on day of funeral which I asked to be cancelled in view of bereavement. Capita says I cancelled not bereavement. Hubby went to task on them and they reluctantly agreed it should read bereaved. They then sent another appointment for 40 miles away at 5 pm. I cannot even travel in car to doctors 5 mile away without being sick . How do I get 40 plus miles. My docs have requested home visit and this so far has been ignored . Capita have offered another appointment 40 miles away again at 8.10 am. . Just what can they not understand about health conditions and severve relaspe. I have no problems with review but 80 mile round trip when I cannot even drive to doctors 5 miles away. Please advise anyone on what I can do or action I can take to resolve

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