Why neurorehabilitation must become a right, not a luxury

MS Trust is proud to have endorsed Thriving Not Surviving: A Right to Neurorehabilitation which is a UK wide consensus statement supported by 19 leading neurological charities and professional bodies. Together, we are calling for urgent action to transform neurorehabilitation for people living with progressive neurological conditions. 

The need for neurorehabilitation

At least one in six people across the UK are affected by a neurological condition, which are illnesses that affect the brain or nervous system. These conditions are now recognised as the leading cause of disability worldwide. In the UK there are over 150,000 people living with multiple sclerosis, which is usually identified in young adulthood between the ages of 20 - 50 years, with the average age of diagnosis approximately 30 years.  MS is most common in people aged between 60–69 years for both sexes and it is the most common non-injury cause of disability in people under 40 years of age.  Alongside this, 43% of people with MS stop working within three years of diagnosis which increases to 70% after 10 years. This generates a significant cost to the health service and the person living with MS. In the general population of working age people (40 – 74 years) around 75% of people are currently employed, compared to just 40% of people living with MS in the same group.

The Thriving Not Surviving report also highlights that too many people are facing long waiting times for appointments. They are being refused care or slipping through the gaps of a system not designed with their needs in mind. 

Against this backdrop, for the first time the NHS has set out a specific MS service specification as part of its wider transformation plans. This represents a positive step forward and signals a commitment to improving MS care while addressing the long‑standing variation, delays and gaps in services highlighted in the report.

A postcode lottery no one should face

Where you live should never determine the standard of care you receive. Yet the report shows striking variation across the UK. Some areas benefit from joined up community teams while others offer no specialist neurorehabilitation at all. Workforce shortages compound the problem, with many regions unable to recruit the physiotherapists, occupational therapists, speech and language therapists, neuropsychologists or rehabilitation physicians needed to provide consistent support. 

The consequences are profound: preventable hospital admissions, early loss of independence, avoidable social isolation, and families absorbing ever greater caring responsibilities.

A system built for acute care, not lifelong change

Neurorehabilitation services remain geared towards short, one-off interventions. This approach may suit an emergency event like a stroke but does not meet the needs of people with progressive conditions such as MS. In these conditions symptoms fluctuate, meaning support is needed at different points over a lifetime. 

Instead, people are often left waiting months for an assessment, discharged too early, or told they don’t meet referral criteria at all. For many, this leads to a deterioration or deconditioning that could have been prevented with timely rehabilitation. For people with MS, whose symptoms are often invisible and rarely understood or recognised, this is often their experience. 

Why neurorehabilitation matters

Neurorehabilitation is far more than physiotherapy or a short block of exercises. It is a joined up support service bringing together a range of professionals to treat complex needs and support the person living with the neurological condition to:

• stay mobile and active
• manage fatigue and fluctuating symptoms
• communicate effectively
• maintain employment or education
• protect their mental wellbeing
• remain independent for longer

Crucially, effective neurorehabilitation prevents decline rather than waiting for crisis. Which in turn improves quality of life while reducing pressure on health and social care.

Principles for change

The report sets out ten clear, evidence based principles for transforming care so people can genuinely thrive. These include:

• a right to timely, specialist neurorehabilitation, wherever you live 
• care delivered closer to home within community and neighbourhood teams
• mental health and neuropsychology embedded as core elements of care
• investment in the workforce
• consistently applied standards aligned with NICE guidance
• support for employment and independence
• national neurology plans and transparent data
• genuine involvement of people with lived experience
• a named care coordinator for every person
• accountability to ensure real, measurable change 

Time for action

People with progressive neurological conditions deserve more than to simply survive. They deserve dignity, opportunity, and support to live life fully. MS Trust is proud to stand alongside charities across the UK in calling for urgent action on this. We want to ensure that everyone living with a progressive neurological condition can access the neurorehabilitation they need to thrive.