The guidelines, published by NICE, aim to improve and standardise care for people who have motor neurone disease (MND).
MND is a group of rare, incurable, progressive, fatal neurodegenerative diseases that attack the motor neurones in the brain and spinal cord. Around 1100 people will develop MND each year in the UK and around 5000 adults currently live with the disease.
Typical symptoms include muscle weakness, wasting, cramps, problems with speech and swallowing, and rare cases, breathing problems. Most people with MND die within 2-3 years of developing symptoms, but 25% are alive at 5 years, and between 5 and 10% are alive at 10 years.
Since there is no cure for MND, the aim of care for the diseases is to maintain ability to function and enable those with MND and their family members to live as full a life as possible.
Currently, care for MND varies. While MND care centres and networks provide coordinated multidisciplinary care, some people with MND are left isolated and their care is less than ideal.
The NICE guidelines include recommendations that cover the care of people with MND from diagnosis until preparation for end of life care to help improve and standardise assessment and management of the disease.
Provide information and support at diagnosis
Among the new recommendations are that information about the diagnosis, prognosis and management of MND should be given by a consultant neurologist.
The consultant should have up-to-date knowledge and experience of treating people with MND unless it is clinically necessary to give the diagnosis in an urgent situation.
People with MND should be provided with information and support at diagnosis or when they ask for it. Information should be oral and may include what MND is, its types and possible causes, and how the disease might progress.
When MND is suspected of confirmed, the person’s GP should be informed without delay and information should be provided about the likely diagnosis.
Ensure a specialist multidisciplinary approach
The updated guidelines also call for coordinated care for people with MND, using a clinic-based specialist MND multidisciplinary approach.
The clinic may be community or hospital based, and include healthcare professionals and social care practitioners with expertise in MND, and staff who see people in their home.
NICE says that multidisciplinary care improves survival in patients with MND, with evidence drawn from models of multidisciplinary care that use a clinic based approach.
Further recommendations call for the multidisciplinary team to be tailored to a person’s needs, and that triggers should be in place if there is a significant change in symptoms identified by the person, family members and/or carers (as appropriate), or healthcare professionals.
Elsewhere, the guideline includes recommendations on psychological and social care support, planning for palliative care, managing symptoms, and care for speech and communication needs.
‘Hugely significant MND guideline will help shape future care’
Sally Light, Chief Executive of the Motor Neurone Disease Association, said: "The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters.
“It is a hugely significant document that 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. We look forward to working with our members and supporters to ensure the NICE guideline on MND has a positive impact on the care and support available to people with MND, their families and carers in England, Wales and Northern Ireland."
Commenting on the guidance, Dr David Oliver, Consultant in Palliative Care and Chair of the group which developed the guideline, said: “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 co-ordinated, 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.”