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Terminally-ill man who was told he was fit to work backs campaign for easier access to benefits

PUBLISHED: 06:00 20 November 2018 | UPDATED: 15:16 20 November 2018

Motor neurone disease sufferer Martin Burnell, 59, from Lowestoft, was assessed as being fit to work despite being told by his consultant that he would never work again. Picture: Victoria Pertusa

Motor neurone disease sufferer Martin Burnell, 59, from Lowestoft, was assessed as being fit to work despite being told by his consultant that he would never work again. Picture: Victoria Pertusa

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A motor neurone disease (MND) sufferer was told he was fit to work by benefits assessors despite his consultant telling him he would never work again.

Martin Burnell, 59, and from Lowestoft, was diagnosed with the terminal illness last November but had not worked since February when he was forced to take time off.

His employer continued to pay him while tests were carried out.

But this stopped when he was diagnosed and he faced assessments for Universal Credit (UC) and Personal Independence Payment (PIP).

The father-of-five and grandfather-of-20 said: “I was being told by my work coach I could still find something to work in. But at the end of the day I have MND, my consultant said I would never work again.”

Motor neurone disease sufferer Martin Burnell, 59, from Lowestoft, was assessed as being fit to work despite being told by his consultant that he would never work again. Picture: Victoria PertusaMotor neurone disease sufferer Martin Burnell, 59, from Lowestoft, was assessed as being fit to work despite being told by his consultant that he would never work again. Picture: Victoria Pertusa

Mr Burnell is just one campaigner in a fight launched by the MND Association and Marie Curie, calling for a change in the law.

Under the special rules for terminal illness applications for disability benefits can be fast-tracked if the person is due to die in the next six months. But campaigners say as MND is so complex it is almost impossible to give such a precise life expectancy. And a second reading of a bill to scrap the six-month rule is currently going through Parliament.

The MND Association found just 9pc of East of England GPs said “the patient’s condition always makes it clear whether they should sign the SRTI form” which leaves many - like Mr Burnell - having to apply for benefits under the standard systems.

This can involve long forms, face to face assessments, conversations in a Job Centre about work related activities and long delays in accessing benefits.

For Mr Burnell he even had a fall on the way to one UC assessment but was still told he did not qualify for any points towards being unable to work.

And his doctor would not fill in a form which would fast track PIP payments as he wrongly believed it was only for those with cancer.

Mr Burnell now has his benefits in place after said an MND Association volunteer spoke with his doctor.

But he was adamant he faced too many obstacles while also having to face the terminal disease.

He said: “I can deal with having MND but to have someone saying I would no longer work and someone else saying I would have to work, it was mixed messages. What I went through, nobody should have to go through. I worked in the care sector and now I want the help.”

Local campaigns contact for the Norfolk and Waveney MND Association, Sue Heal, said: “A diagnosis of MND is devastating and it is shocking that people are then having to fill in long forms, go through face to face assessments and still wait an unacceptable amount of time before receiving benefits. For many that money is required to help them not only cover day to day expenses but also to access the care they desperately need as their condition deteriorates.

“The government should be making things as easy as possible for people with MND and those close to them. This is a small thing they could do which would make a big difference to people right now.”

A Department for Work and Pensions spokesman said: “We’re determined to ensure that people with terminal illnesses get the support they need through this difficult time - we fast-track their claims, provide guaranteed benefit entitlement, and remove the need for any face-to-face assessments. The rules are applied sensitively, and with consideration for a person’s individual circumstances.

“The minister has previously met with Madeleine Moon to discuss the issues she has raised, and we will work with her on this agenda in the future, alongside stakeholders such as the MND Association.”

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