Patient wins fight for care after NHS blunder

A man suffering from a terminal illness has won a battle for vital support to help him as his condition deteriorates after an embarrassing blunder by NHS chiefs left him unable to access care.
Ian Lawson with his dog, AshIan Lawson with his dog, Ash
Ian Lawson with his dog, Ash

Grandfather Ian Lawson, 59, of Mickleby, near Whitby, who was diagnosed with motor neurone disease (MND) in 2011, was rejected for an expert assessment available to others in Yorkshire giving him access to specialist technology to help him when his illness worsens.

He 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.

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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 was told 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 Motor Neurone Disease criticised the NHS for failing to provide hi-tech help to MND patients. He had previously been referred to a similar centre in Newcastle, which told him it did not deal with patients from Yorkshire.

The centres are among a number providing Augmentative and Alternative Communication (AAC) services in a new £15 million programme funded by NHS England, which took over responsibility for the service in the wake of the Government’s controversial NHS reorganisation.

Mr Lawson has an orange four-wheel drive wheelchair which he uses to explore clifftop paths of the Cleveland Way, the beach at Runswick Bay and redundant railway lines near his home.

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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.

“Assistive technology will allow me to continue to drive my wheelchair when my hands can no longer operate my joystick,” he said.

He hoped his victory in winning an assessment, to be carried out by experts from Newcastle, meant others from the area who might have already been turned down would benefit.

“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,” he said.

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“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.”

He 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.”

A regional spokeswoman for NHS England said it was committed to improving access to specialist assessments and equipment to provide better, more timely care and make better use of resources.

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“Since October 2014 a ring-fenced 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 the geographical area of Hambleton, Richmondshire and Whitby, NHS England discovered we did not have a service in place for patients in that area in February 2015.

“The need for specialised AAC services is relatively rare and only a small number of people are likely to be affected. But we are working with providers in the area to ensure patients from Hambleton, Richmondshire and Whitby who may need AAC services are able to access what they need.”

Mr Lawson was diagnosed with motor neurone disease after he began falling over and his voice became slurred.

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He regards himself as “one of the lucky ones” as the illness has progressed more slowly.

He said: “I have made friends and lost them with MND in the four years I have had my diagnosis. My progression is mainly weakness generally but recently very much in my arms and hands hence my request for assistive technology.

“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.”