The news has been welcomed by the Motor Neurone Disease Association, whose chief executive, Sally Light, called the guideline “a hugely significant document”.
Around 1,100 people in the UK develop motor neurone disease (MND) every year and there are approximately 5,000 adults currently living with the disease.
Currently, care for people with MND varies, with some left isolated despite instances of excellent care.
Most people with MND die within two to three years of developing symptoms, with 25% alive at five years and 5-10% alive at 10 years. There is no cure for the disease, meaning that care which enables the person to live as full a life as possible is vital.
The guideline features a number of recommendations which aim to improve the assessment and management of the disease, from the point of diagnosis all the way through to end of life care.
Chief among the recommendations is that information about diagnosis, prognosis and management of the disease should be given by a consultant neurologist with up-to-date knowledge and experience of treating people with MND.
NICE also calls for a “clinic-based specialist MND multidisciplinary approach”, with clinics based in either the community or a hospital and staffed with experienced health and social care professionals who are able to see people in their own homes.
Around end of life care, the guideline advises that healthcare professionals be prepared to discuss end of life issues whenever people wish to do so and provide support and advice on advance care planning. It also recommends that these conversations take place early on, especially if it is expected that a person’s communication ability, cognitive status or mental capacity will deteriorate.
Responding to the publication of the guideline, Light paid tribute to her charity’s supporters. “This long-awaited guideline has come about after more than four years of campaigning by the Association and our supporters,” she said.
She continued: “[The guideline] sets out in detail what good care looks like and how it should be delivered. It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers.”
Dr David Oliver, consultant in palliative care and chair of the group which developed the guideline, added: “The guideline will enable all people with MND across the country, whether in hospital, at home, in a care home or hospice, to receive care that is coordinated, consistent, comprehensive and responsive to their needs, that will improve their quality of life and support them, and their families. The challenge is now to see the recommendations put into practice in services across the country.”
The full guideline is available on the NICE website.