Page last updated at 07:22 GMT, Wednesday, 17 February 2010

Ex-schools chief in Motor Neurone Disease campaign

Chris Woodhead
Mr Woodhead was diagnosed with MND four years ago

A former chief inspector of schools for England is leading a campaign for a Wales and England strategy to tackle motor neurone disease (MND).

Chris Woodhead, who has the disease, said he wants a better quality of life, and dignity in death, for sufferers.

Despite health being a devolved issue, Mr Woodhead says a joint strategy would benefit suffers of the condition.

"It could actually save the NHS money," said Mr Woodhead, 63, who now lives in Penrhyndeudraeth, Gwynedd.

A parliamentary petition on the matter, backed by the MND Association, has already been signed by 82 MPs, including eight from Wales.

MND is a degenerative illness which attacks the nerves that control muscle movement.

There is no cure for the disease and half of those with MND die within 14 months of diagnosis, said the MND Association.

Imagine a healthy and alert mind trapped inside a body that can't move, but can still think and feel
Chris Woodhead

Mr Woodhead, who resigned his Ofsted post in 2000, is launching the 'Make MND Matter at the General Election' campaign in tandem with the association.

The campaign is urging political leaders to make a commitment in their election manifestos for a joint England and Wales strategy for the disease.

"Few diseases are as devastating as MND," explained Mr Woodhead, formerly an avid hiker and climber who last May revealed he now depends on his wife Christine to help him do routine things like dressing.

"Imagine a healthy and alert mind trapped inside a body that can't move, but can still think and feel, that is what it's like to have motor neurone disease."

'Co-ordinated approach'

Mr Woodhead said the disease required complex and demanding care, and yet those with MND continued to receive fragmented and often poor quality services.

This was not only distressing for the individuals but also wasteful of public resources as it could often lead to otherwise avoidable emergency hospital admissions, he said.

He added: "Five people die from motor neurone disease in the UK every day.

"There is no cure so we can't change the outcome, but with a co-ordinated approach, we can improve quality of life for those with MND and at the same time make things easier for carers and relatives.

"It isn't complicated, it just needs the political willpower - and it could actually save the NHS money, because at the moment too many people are being treated in hospital when they could be looked after at home."

A strategy will deliver better value for money at a time when we all know that government funding is under strain
Dr Kirstine Knox, MND Association

The MND Association said an England and Wales strategy would set standards to co-ordinate care needs from diagnosis to death.

It would also enable crucial research which, according to the association's chief executive Dr Kirstine Knox, is currently being held back by red tape.

"Health care professionals desperately need guidance on the diagnosis and treatment," said Dr Knox.

"It currently takes an average of 17 months to diagnose MND from the onset of symptoms, and that is way too long."

The assembly government has been asked for its response.

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