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WEEKEND WEB: MND charter is so important

Motor Neurone Disease
Motor Neurone Disease


Last week, meeting representatives of the MND Association in Spalding, I learned about their inspiring campaign to raise awareness of Motor Neurone Disease.

Still little understood, this disease affects around 5,000 adults in Britain at any one time. It is a fatal – and rapidly progressing – condition, which kills a third of its sufferers within a year of diagnosis, and over half within two years. It was sobering to discover that six people are diagnosed with it each day and – at present, at least – there is no cure.

MND can affect a person’s walking, talking, and even breathing, but because the symptoms manifest themselves quite differently in each patient, diagnosis can be difficult and the course of the illness equally difficult to predict.

The National Institute for Health and Care Excellence published new guidelines on the assessment and management of MND in February 2016, which provides doctors with vital clarity over the signs of the disease and recommends new, robust pathways for prompt referrals in cases where it is suspected. The Royal College of GPs and the MND Association have also produced a ‘Red Flag Tool’ to assist GPs further and ensure that necessary referrals can be made without delays.

Because of the need for a tailored and individual approach to care, more power and responsibility is being given to local authorities. Thanks to the work of local activists – and, in particular, Hannah Harris – I am pleased to that both Lincolnshire County Council and South Holland District Council have adopted the MND Charter.

The five-point Charter, which many Councils across the country are adopting, enshrines their commitment to early diagnosis and appropriate access to high-quality treatment, and highlights the selfless devotion of carers, whose sacrifices too often go unnoticed.

National government has its role to play. We have increased research funding for neurological conditions from under £30 million in 2010 to £46.7 million now. Those set to benefit from more research include people with brain tumours, who number more than 9,000 people each year. As the patron of the Lincolnshire Brain Tumour Support Group, I met again their inspirational local Treasurer, Joanna Hillier, together with sufferers and carers last Friday. We discussed much that is important for those affected by this condition. There is still much to be done in the case of these and similar life-changing challenges. For example, people living with Motor Neurone Disease must still undergo compulsory reassessments for their entitlement to benefits.

Yet when dealing with a chronic, incurable and degenerative disease, it is surely unreasonable to ask people to continue to ‘prove’ how ill they are. Instead, reassessments should voluntary when individuals require more support as their condition worsens.

I intend to raise this matter with my colleagues in Government to ensure that – at least until a cure is found – the spirit of the MND Charter pervades all that we think and do.


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