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MP to take up issue of hidden costs of living with motor neurone disease

MP John Hayes pictured with, from left: Hannah Harris, Alice Fuller of the MND Association and Barry Wilson of the Lincolnshire branch.
MP John Hayes pictured with, from left: Hannah Harris, Alice Fuller of the MND Association and Barry Wilson of the Lincolnshire branch.

People affected by motor neurone disease (MND) met with local MP John Hayes recently to discuss the immense financial hardship families can face when trying to cope with this rapidly progressing, fatal disease.

Research commissioned by the Motor Neurone Disease (MND) Association found some families are wiping out their savings to get support, or going without because they can’t afford it.

The amounts people have to spend can vary hugely but on average, life with MND is costing an extra £12,000 a year, before loss of earnings. Those living with children and those of working age are likely to incur even higher costs.

Members of the Lincolnshire branch of the MND Association have joined the national MND Costs campaign helping to raise awareness of this issue and are calling for better access to the benefits and financial support people with MND need.

The meeting follows other local efforts to raise the profile of the devastating neurological disease, including the adoption of the MND Charter by Lincolnshire County Council in February.

Mr Hayes said: “I was really impressed by the case made to me by those with personal experience of motor neurone disease (MND). This is a progressive disease which can blight lives and it’s our duty to support those who have it and their carers.

“That means getting people with MND the help and support they need when they need it, and I will be pressing for better recognition of exactly those needs.”

Spalding resident Hannah Harris, who led the meeting and was the driving force behind the adoption of the MND Charter by the county council, said: “I’ve seen first-hand the impact MND has on families, having lost my dad to the disease in 2015.

“I spent six months struggling to get him a diagnosis, and then when he had one, it was hard getting him the help and care he needed. As well as sharing my own experience with my MP, I shared the stories of three other local families, which ranged from people struggling to get a ramp so they can get in and out of their home using a wheelchair, to selling their homes to pay for care home fees.

“Together this illustrated that much more needs to be done to improve recognition of MND and its huge financial impact, and I’m pleased that John Hayes agreed to champion this issue locally and nationally.”

Mr Hayes agreed to take action on a number of the points raised, including raising concerns with the Minister of state for Disabled People, Work & Health Penny Mordant about exempting people with MND from reassessment once they have been found eligible to receive the disability benefit Employment and Support Allowance.


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