Grandfather wins battle for specialist care

Motor Neurone Disease sufferer Ian Lawson at his Mickleby home
Motor Neurone Disease sufferer Ian Lawson at his Mickleby home

A man suffering from a terminal illness has won a battle for vital support after an embarrassing blunder by NHS chiefs left him unable to access care.

Grandfather Ian Lawson, 59, of Mickleby was diagnosed with Motor Neurone Disease (MND) in 2011.

At the time he was rejected for an expert assessment available to others in Yorkshire, giving him access to specialist technology to help him when his illness worsens.

Mr Lawson was warned it would be two years before he would receive checks - even though the condition claims the lives of more than half of sufferers within two years of diagnosis.

Now after repeated efforts to secure help, NHS chiefs have agreed to give the former self-employed businessman an assessment after they admitted a new contract for the service had omitted patients from Whitby, Hambleton and Richmondshire.

Mr Lawson said: “I hope I’ve highlighted a situation that may have already affected other people who might have accepted it.

“If it also benefits other people with neurological conditions, it’s been worthwhile.”

Mr Lawson was initially told that he was not eligible for help from experts at the Barnsley Assistive Technology centre on the same day as a report by the All Party Parliamentary Group on MND criticised the NHS for failing to provide hi-tech help to sufferers of the disease.

He had previously been referred to a similar centre in Newcastle, which told him it did not deal with patients from Yorkshire.

“They said I had slipped through the net and when they investigated they found this area of North Yorkshire was not covered by either centre,” Mr Lawson added.

“The NHS is slow to provide assessments, the equipment, then the training and support. Sadly it comes too late for many people living with MND.

“All I want is quick referrals for an assessment as MND progresses quickly in most cases.”

Mr Lawson was diagnosed with Motor Neurone Disease after he began falling over and his voice became slurred. He regards himself as “one of the lucky ones” as the illness has progressed relatively slowly.

Using a four-wheel drive wheelchair he is still mobile and spends much of his time exploring clifftop paths of the Cleveland Way, the beach at Runswick Bay and redundant railway lines near his home.

But he already fears his ability to use his hands and arms is failing and wants help to allow him to continue to use his wheelchair.

“I am stable by most MND measures but no-one knows for how long. I could remain stable for some time or I could slide downhill, starting tomorrow,” he continued.

A regional spokeswoman for NHS England revealed that it was committed to improving access to specialist assessments and equipment .

“Since October 2014 a budget for commissioning AAC services has been in place and providers of these services have been agreed in most areas,” she said.

“In the case of Hambleton, Richmondshire and Whitby, we discovered we did not have a service in place for patients in that area in February 2015.

“We are working with providers in the area to ensure patients in Whitby who may need AAC services are able to access what they need.”