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Motor Neuron sufferers shouldn't die without a voice

May 3, 2015 8:52 AM

Thank you for contacting me about Motor Neuron Disease(MND) and raising the really important issue of making sure those affected have their voices heard.

My wife and I have some knowledge of this disease. A good friend of ours, who's daughter was a bridesmaid at our wedding in Cowes over 25 years ago, died of this disease a couple of years ago. This is why I would be happy to sign up to the MND Charter, as I am very supportive of its five aims.

I also share your concerns about some patients not being able to communicate about their care, and how they are treated.As you point out, MND is a fast moving disease so patients deserve to have an early diagnosis, and access to high levels of treatment. With no single medical test available to be applied to check for MND, confirming a diagnosis can take some time. It makes it all the more important that when MND is diagnosed, people can access the right information about their condition, care options and advice for their families on how it could affect them.

In terms care and treatment, a multi-disciplinary team of health professional can work to relieve symptoms and slow the progression of the disease - including access to a speech and language therapist to teach patients helpful speech techniques. As the disease progresses, assistive technology might be more useful to help a patient communicate as fully as possible. Having a therapist available is important to offer advice about the most effective communication aids for each individual.

Providing funding, information and support needs to be consistent across the UK - which is not always the case as highlighted by MNDA's recent All Parliamentary Group report. We have asked Liberal Democrat MPs to contact Local Authorities in their areas to find out what services communications services are being provided to MND patients, and supported the report's publication in late January.

In terms of access to care and treatment, I believe much more can be done to integrate health care and social care. Liberal Democrats in Government have championed better integration to deliver services that are better shaped around the needs of patients. I believe this will be particularly beneficial for people with complex needs, including people with MND.

The care that people with MND receive should be compassionate, appropriate to their needs and always reflect the choice of the individual needs. Liberal Democrats in Government are working to improve palliative care and ensure that more patients who are at the end of life are given the option to die in their own home if they wish. We would also promote more use of personal budgets and Care Navigators to give patients more control over their own care.

The Charter's emphasis on Carers is important - they are often the unsung heroes of our health system and Liberal Democrats want to do more to help them. We have improved respite services in this Parliament and fought hard to secure the cap on the cost of care proposed by Andrew Dilnot. But we can and must go further. Liberal Democrats want to introduce a new 'Right to Respite' package for carers, including an annual 'Carer's Respite Bonus' worth £250 for those carers looking after someone for 35 hours or more each week over a 12 month period. We would develop a 'Carers' Passport' scheme to inform carers of their rights in the NHS, assert their role as 'expert partners in care' and gain access to support like free hospital parking. We would also raise the amount that can be earned before losing carer's allowance to £150 a week.

Finally, I'd add that sustained investment in the health service is vital if we are to ensure that high quality care is available to everyone when they need it. So I am proud that, in line with those recommendations, the Liberal Democrats have committed to increase the NHS budget by £8bn per year by 2020. So far we are the only party to do so.

Thank you for contacting me about this. I will be working to raise awareness of the illness if I am elected to Parliament.

​I hope this answers your question​.