Victory for Norfolk campaigners over benefit rules for terminally ill

Motor Neurone Disease campaigners.

Jeremy Vine, Sue Heal, Peter Aldous MP, Martin Burnell and Dianne Hepburn at a Parliamentary reception pushing for reform over benefits for people with Motor Neurone Disease. - Credit: Motor Neurone Disease Association

Norfolk and Waveney campaigners, who have fought for years to make it easier for people who are terminally ill to get benefits, have scored a victory in their battle.

The government has announced a reform of the benefit system for terminally ill people - in response to the Scrap 6 Months campaign led by the Motor Neurone Disease Association and Marie Curie, supported by Norfolk campaigners and MPs.

The government has said it will scrap the rule which stipulated people must prove they have six months or less to live before receiving fast-track access to benefits.

New rules mean people can apply if their health professional says they may die within 12 months.

Like many terminal illnesses, motor neurone disease (MND) is difficult to predict, so many people diagnosed with the disease are unable to access the fast-track process.

Sue Heal, from Wymondham, who joined the campaign at its launch in 2018, said: "I began volunteering with the MND Association in 2012 after losing my husband to the disease.

"Since then I have heard people describe the struggles they faced accessing benefits, with form filling and face to face interviews taking time that should have been devoted to making the most of life at what is, or too often was, a very challenging and emotional time.

"I hope the reforms announced will make a difference to people with MND, easing financial concerns and allowing them to enjoy the time they have left."

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While welcoming the commitment for change, she now wants the government to put it in place as soon as possible. 

She said: "I welcome today’s announcement and, whilst I would personally have been happier to see a clinical rather than a time based definition of terminal illness, recognise the benefit of the changes to people faced with a terminal diagnosis.

"My hope is that there will be no delay in implementing the change so that no one else has to wait for the financial support they need.

"I would also like to thank the MPs of Norfolk and Waveney, both present and past, who have offered their support for this campaign to help everyone facing a terminal diagnosis.

"I would also like to thank the EDP for their coverage of our campaign."

'I am on death row and I have not committed murder'

Martin Burnell, 63, from Lowestoft, was diagnosed with Motor Neurone Disease in November 2017.

When he had assessments for Universal Credit, he did not qualify for any points towards being unable to work, even though his consultant had told him he would never work again.

And his doctor would not fill in a form to fast track his Personal Independence Payment (PIP), wrongly believing it was only for those with cancer.

While Mr Burnell now does have his benefits in place after the MND Association got involved, he said people should not have to face the sort of battles he and other people with terminal illnesses do.

He said: "This is a partial victory, but there is still a lot more hat they need to implement.

"They do need to do a lot more. I used to work in a nursing home, so I've been on that side of it and when I was suddenly on the other side, the help for me was non-existent.

"I can live around the disease. I will not let it beat me. Yes, I have got MND and I will deteriorate, but nobody can turn around and say when that will be.

"At the end of the day, I am on death row and I have not committed murder.

"And anyone who is terminally ill should be treated properly."