The Optimal Clinical Pathway for MND sets out what good treatment, care and support should look like across the full pathway, from first presentation through to ongoing management and end of life care. It is designed to support service improvement, commissioning and the delivery of high quality, coordinated care for people affected by MND.
Developed by the neurological community with support from NHS England and the National Neurosciences Advisory Group, this pathway forms part of a wider suite of optimal neuroscience clinical pathways. It aligns with the NICE guideline on MND (NG42) and should be used alongside it to support best practice in care and management.
Download the full pathway document
About this pathway
This pathway describes the aspirations for good MND care across the full pathway, from first symptoms through to long term management and end of life care. It was developed with input from professional bodies, patient organisations and a public consultation process.
It is intended to support consistent, high quality care across services, and to help commissioners and providers design and deliver services that meet the complex and changing needs of people living with MND.
The MND care pathway at a glance
The pathway sets out the key stages of care, including first symptoms, assessment and diagnosis, treatment, ongoing management, and end of life care. It also highlights the role of education, supported self management and timely response to changes in symptoms.
Care should be coordinated across primary care, local neurology services, specialist MND services and community teams. A networked approach helps ensure people receive the right care, at the right time, in the right place, as close to home as possible.
Diagnosis and early support
People with possible MND should be referred promptly to a specialist MND service, with consultant led triage where possible. MND can present in a range of ways, including progressive weakness, speech or swallowing difficulties, cognitive or behavioural change, and respiratory symptoms. Diagnosis can be challenging and may require specialist investigations.
At diagnosis, a care plan should be agreed with the person. This should include clear information about the diagnosis and any uncertainty, discussion of treatment and support options, and contact details for the MND team, including the care coordinator as a first point of contact.
People should also be signposted to support services, including the MND Association, and supported with practical self management, psychological support and social care needs where appropriate.
Ongoing treatment and multidisciplinary care
Ongoing care should be proactive, coordinated and multidisciplinary. People with MND should have regular reviews with a specialist team, typically every two to four months, or more frequently if needed.
The multidisciplinary team should include neurology, specialist nursing, dietetics, physiotherapy, occupational therapy, speech and language therapy and respiratory services, with access to psychology, palliative care and other specialist support.
Care planning should include symptom management, respiratory and nutritional monitoring, psychological support, and an emergency care plan. It should also include a named point of contact and support for families and carers. Close collaboration across health and social care is essential to provide timely access to equipment, adaptations and community support.
Advanced care and end of life support
As MND progresses, care should become increasingly anticipatory, with regular review and planning for future needs. People should have access to palliative care services and be supported to develop advance care plans, including decisions about future treatment and care.
People with advanced MND should be included on primary care palliative care registers, have access to urgent and emergency care plans, and receive coordinated support from specialist services.
Care should address physical, psychological, social and spiritual needs, and include support for families and carers. Clear communication and shared decision making are essential, particularly as people approach the end of life, with a focus on supporting care in the person’s preferred place where possible.
Specialised services, barriers and recommendations
Specialist MND services play a key role in diagnosis, treatment and coordinated multidisciplinary care. People with MND should be referred to MND care centres or networks, which provide specialist expertise, access to investigations and treatments, and links to research and clinical trials.
The pathway highlights variation in access to services, particularly in areas such as respiratory support, psychological care, rehabilitation and complex home ventilation. It also identifies challenges including fragmented services, limited resources and variation in expertise.
Enablers include stronger integration across services, shared care models, multidisciplinary working across organisations, use of technology to support communication, and improved access to community multidisciplinary teams.
Quality standards and key metrics
The pathway includes a set of quality standards to support service improvement and consistency of care. These include timely access to specialist MND clinics, having a named point of contact, and receiving follow up after diagnosis.
They also cover regular assessment of respiratory function and nutrition, access to interventions such as non invasive ventilation and gastrostomy, and discussion of drug treatments including riluzole.
Assessment of cognitive and communication needs, access to psychological support, opportunities to discuss end of life care, and access to multidisciplinary support and research are also included.
These measures can help services monitor performance and improve outcomes for people living with MND.