Chris Woodhead spearheads campaign for National Strategy

Former chief inspector of schools, Chris Woodhead, who was diagnosed with motor neurone disease (MND) in 2006, today launches an urgent call for national action to improve the quality of life and achieve dignity in death for people with this devastating disease.

Together with the MND Association, Mr Woodhead is appealing for people to pledge their support online at www.mnd2010.org and call on the Government to produce a National Strategy for MND.

Dr Kirstine Knox, chief executive of the MND Association, said: “This campaign comes after decades of failure to properly address the needs of people with MND in an appropriate, timely and equitable way. There is currently and never has been any form of official national guidance on how to treat and care for people with MND.

"The MND Association believes that a National Strategy is urgently required to provide a road map and set standards to help people with MND receive the coordinated care they need from diagnosis to death. A National Strategy will also support efforts to achieve more efficient use of funds and reduce the delays impacting crucial research which is caused by bureaucratic and regulatory obstacles.”

Mr Woodhead and the MND Association urge parliamentarians, other elected officials and policy makers, health and social care professionals and members of the public to visit www.mnd2010.org to sign an e-petition, pledge their support and share experiences of coping with MND under current systems of care. A total of 82 MPs have already signed an Early Day Motion to support this call and it is the key demand in the MND Association’s manifesto for the forthcoming election campaign.

Mr Woodhead explains: “The disease progresses rapidly and requires complex and demanding care, yet we continue to receive fragmented and often poor quality services. The lack of effective forward planning is not only distressing for the individuals but also wasteful of public resources as it can often lead to otherwise avoidable emergency hospital admissions.

"Together with the MND Association, I’m today calling on political leaders of all parties to give a commitment to producing a national care strategy for MND in their forthcoming election manifestos.

“Five people die from MND in the UK every day; there is no cure, so we can’t change the outcome, but with a coordinated 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.”

Dr Knox added: “Healthcare professionals desperately need national guidance on the diagnosis and treatment - it currently takes an average of 17 months to diagnose MND from the onset of symptoms, and that is too long. We also need a rapid response system to get home care and specialist equipment in place quickly so both patients and their families can enjoy what may be just a few precious months together.

"Recent major advances in understanding the causes of MND have inspired the medical research community, but research remains poorly funded and hampered by bureaucracy and regulatory burdens.

"A National Strategy will deliver better value for money at a time when we all know that government funding is under strain, a well co-ordinated system is potentially a ‘win win’ situation. We’re very keen to work with politicians on all sides to develop such a strategy, offering our own very successful Year of Care Pathway guidelines as a template.”