Call For More NHS Funding For Motor Neurone Care

The Scottish Parliament will be asked this week to support a charity that cares for sufferers of one of nature’s cruellest diseases.

The Scottish Motor Neurone Disease Association is the only charity in the country providing a care service for people with MND and spent more than £300,000 last year while receiving less than £11,000 from the NHS.

“It is a service stretched to breaking point with professionals working huge hours of overtime and caught up in NHS administration duties,” chief executive Craig Stockton said yesterday.

Campaigners have lobbied NHS authorities and MSPs to seek 50% NHS funding.

“Funding will relieve pressure upon the team and ensure employment of additional members of staff,” Mr Stockton added.

MND is a fatal illness with no cure and kills half of its victims in two years. They have included Lisbon Lion Jimmy Johnstone and the actor David Niven.

First, though, it lays waste to their bodies while leaving their minds intact, causing progressive paralysis, loss of speech and impairing the ability to eat or drink. It attacks the nervous system serving the limbs, diaphragm and muscles in the mouth and throat.

Motor Neurone Disease calls on a wide range of services from the NHS and local authority services – district nurses, therapists, dietitians and orthotists.

Carole Ferguson, is one of five clinical nurse specialists employed by the association to liaise with patients and organise care. “We have four working full-time and one part-time so at any one time we will have more than 60 cases each,” said Ms Ferguson, whose west of Scotland territory extends to Dumfries and Galloway.

She and her colleagues have noticed the age of onset decreasing recently.

“It used to be mainly people of retiring age but now we are seeing more people in their 50s and 60s contracting it,” she said.

On Wednesday, on the eve of Global MND awareness day, Margaret Mitchell, Conservative MSP for Central Scotland, will ask MSPs to consider the provision of half the funding for this service.

She said: “In the financial year 2005-2006 the association incurred costs of £63,836 in relation to the services provided by the MND care teams within central Scotland.

“There was no financial contribution towards these costs from NHS Lanarkshire, NHS Forth Valley or NHS Ayrshire and Arran, the three NHS boards covering the central Scotland area.

“There is a compelling case for NHS boards to meet some of the costs of providing these care teams.”

A spokesman for NHS Ayrshire and Arran said: “We have been actively involved in discussions to develop a managed clinical network for motor neurone disease by providing specialist support to generic services.”

NHS Lanarkshire said it was committed to ensuring the right support for people with neurological conditions, and was undertaking a comprehensive review of neurological services in Lanarkshire and considering an application for funding from the Scottish Motor Neurone Disease Association as part of this review.

Forth Valley said it had agreed funding with Scottish MNDA to the tune of 50%.

Teacher whose cheerfulness is lesson to all

Nothing could be less like a home with a death sentence hanging over it than the flat of Michael and Eileen Mitchell in Newton Mearns.

Mr Mitchell, 59, is a hearty and welcoming host. His wife remains in the corner of the couch, unable to talk, but in the space of more than an hour she is never out of the loop and the smile is never far from her face.

Yet at 54 Mrs Mitchell is four years into a cruel illness that kills half its victims in just over two years. She knows motor neurone disease is terminal, but her cheerfulness in the face of it is humbling.

In the meantime, she and her husband speak highly of the services provided by the NHS, orchestrated by Carole Ferguson. “People are out every day, so courteous and professional,” he said.

The Mitchells grew up in Castlemilk. Both trained as teachers, and spent 20 years travelling the world, Michael working in the oil industry, Eileen teaching English. The Queen of the Netherlands’ granddaughter was among her pupils.

They had to pick their lives up after a devastating blow in 1989 when their only child, Marie-Claire, succumbed to cot death at 15 months while they were living in Brunei. Then four years ago the first signs of Mrs Mitchell’s illness emerged when her eyelid started drooping.

As it developed it was diagnosed as myasthenia gravis – a chronic but not fatal brain chemistry disorder that causes muscle fatigue. But her speech deteriorated and two years ago her consultant realised something worse was afoot.

She had to give up her job and in May her husband, who had been supply teaching, gave that up to look after her.

It is only motor functions that are affected by MND. Mrs Mitchell retains all her senses and mentally she is bright, communicating via her laptop or her husband, confirming his words with a cheerful thumbs up.