29 March 2017

What a NICE guideline means for the motor neurone disease community Rachael Marsden, Advanced Nurse Practitioner, Oxford MND Care and Research Centre

Rachael sat on the committee for the guideline on motor neurone disease. She discusses what a NICE guideline means for those living with MND.

If you were a person who has always been fit and well, but started to experience weakness in a limb or changes in your speech, you would probably go to your GP.

They would examine you, but may not find anything untoward, so would give you some advice and suggest you return if your symptoms don’t improve.

It could take over a year, or even as long as 18 months, before the problem is significant enough for you to be referred to a neurologist.

This is a typical story for many people who are diagnosed with motor neurone disease (MND). This is because MND is such a rare disease where symptoms develop slowly and subtly over time.

MND is a disease of the motor neurones in the brain and spinal cord. When those motor neurones die, they affect muscles and movement. When muscles don’t move, they start to weaken and waste away causing cramps, problems with speech and swallowing, and in rare cases, breathing problems.

So once a diagnosis of MND has been made, you would want to ensure that you receive care and support from a team of professionals who will totally understand your needs.

But unfortunately, not everyone with MND receives the same standard of care across the country. And that’s where the NICE guideline can help. It sets out what the best care should look like for people diagnosed with MND no matter where they live.

The recommendations are based on evidence and layout the fundamentals of best practice, such as using a clinic-based, multidisciplinary approach when coordinating care.

The guideline also says that consultant neurologists who diagnose MND should have up-to-date knowledge of the disease and experience in treating people with MND.

For those of us who work with and care for those diagnosed with MND, we know that we have to be proactive and see our patients on a regular basis to deliver the best ongoing care and management.

As there is no cure for MND, our aim is to enable all those with MND and their families to live as full as life as possible. The NICE guideline is a hugely significant step to achieving that across the country.

If you were living with MND, whether in a hospital, at home or in a care home or hospice, you would want to receive co-ordinated and consistent care that responded to your needs.

So by setting out what good care looks like and how it should be delivered, the NICE guideline ensures that those living with MND, their families and carers can enjoy a good quality of life.

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