The fight to save specialist spinal cord injury care
By Ruth Hunt
It is estimated that each year there are 4,400 new cases of someone sustaining a spinal cord injury (SCI).
For these people it is crucial they receive specialist treatment not only when they are first injured but as they embark on their journey living with such complex disabilities.
Why SCI are such complex injuries is they involve damage to the spinal cord or nerves. This can often result in life-changing issues with a loss of sensory and motor function below their injury causing problems such as paralysis, breathing issues, and loss of bowel/bladder control.
This means such patients need careful monitoring from one of the 12 Spinal Cord Injuries Centres (SCIC) based across the country. These centres of excellence monitor SCI patients and can be accessed whenever there is a problem.
This is part of the NHS National Strategy for Spinal Cord Injuries:
“The service provides care to people who have sustained an injury to the spinal cord as a result of injury or disease.
“It encompasses acute care following the injury, surgical or non-surgical stabilisation of the spine, rehabilitation and reintegration into the community, life-long follow-up of people living with spinal cord injury, and further admission if necessary for medical or surgical management. Ventilation is provided to people with higher level injuries.
“The service provides a wide range of services to meet the special needs of people with spinal cord injury, including urology, respiratory, psychology, physiotherapy, occupational therapy, sexual and fertility advice, reintegration planning, and the management of spasticity, pressure ulcers and other complications.”
But this National Strategy is under threat, as the current plan is to move away from a national approach to local Integrated Care Boards (ICB) in 2027.
Such a move could lead to concerns about a postcode lottery and the loss of both specialist staff and centres and is why on Friday 15th May 2026 on Spinal Cord Injury Awareness Day the message was ‘keep it together’.
Cross-party MPs have also warned that these proposals by NHS England to move spinal cord injury services from national to local commissioning risks taking care “in the wrong direction”, directly contradicting recommendations from a major parliamentary inquiry.
The All-Party Parliamentary Group on Spinal Cord Injury raised the alarm in a meeting with Public Health Minister Sharon Hodgson MP, following publication of its report, From Fragmented to Coordinated: Building a National Spinal Cord Injury Strategy*.
The report calls for greater national coordination, consistent standards, and long-term system reform.
This is in direct contrast to the NHS proposals that would shift responsibility to Integrated Care Boards (ICBs).
The Spinal Injuries Association (SIA) have sent an open letter signed by nearly 100 signatures, including 6 Spinal Cord Injury Centres to Secretary of State for Health and Social Care, Wes Streeting, urging the Department of Health and Social Care, NHS England and Parliament to ensure that spinal cord injury services remain within national specialised commissioning.
The immediate concern of moving from a national service to community services is patients are at risk of a ‘postcode lottery’.
This is because those patients who already live in an area that has strong local services will fare much better than those living in more remote areas or where services have been depleted due to the harsh austerity years.
Kayles is one of those patients where her geographical area means there were no local specialist services available to her when she sustained her SCI due to a slipped disc.
She lives in Tavistock so attended her local hospital, where her pain was dismissed by doctors.
Fighting to just get the right diagnosis of SCI took Kayles six long months with a further 16 months waiting to get referred to the SCIC in Salisbury.
Kayles said: “The fact is we don’t have that many hospitals down here that can deal with any spinal cord injured patients. This is the area we live in. We have cobblestones, no dentist and after they shut half the hospitals, the hospitals are overwhelmed.”
There is also concern about losing specialist doctors and nurses.
Shirley has been receiving specialist care through her nearest SCIC for degenerative cervical myelopathy.
Shirley has valid concerns regarding the move from specialist care from the SCIC to being community based.
“My worry is if you bring it to a more community-based thing, you’re diluting knowledge,” Shirley said.
“When you’ve got people in centres of excellence, they’ve got access to a huge multidisciplinary team. They’re geared up for anything that comes through the door.”
Shirley thinks this level of collaboration will be lost if there’s a move to the community and that will be to the to the detriment of patients.
She said: “That’s why you need to hang on to the centres of excellence because you need them to actually set the standards for care that everyone in the NHS or Health & Social Care professions or private sector should all be following.”
Shirley also argued that the lack of district nurses, has had a knock-on impact on the quality of everyday nurses in the community. Such staff are more likely to be health care assistants or carers in the social care sector.
But if these plans go ahead, it will need specialist nurses who can look after patients with SCI otherwise there’s a danger they can ‘do more harm than good.’
That phrase doing more harm than good will resonant with many of those who have SCI. Patients with a SCI who had been an inpatient of a local hospital, an environment not equipped for them, with the lack of knowledge leaving them exposed to poor care.
But in the community, it can be very scary when specialist treatment is required but the carers have sparse knowledge about SCI and how to carry out this care.
This lack of knowledge across the whole of the UK with the need for services to remain nationally coordinated is one of the reasons why the National Strategy of 2013 needs updating.
The Spinal Injuries Association produced a National Strategy 2030 to give guidance to policy leaders in both the government and NHS. It can be read here: https://www.spinal.co.uk/about-us/our-2030-strategy/
But such a national strategy is at risk of being ignored if the move to ICB happens.
The NHS argument is that transferring from national commissioning to local and regional ICBs in April 2027 is intended to support a better integration of NHS services within an area.
The SIA said: “We have serious concerns that transferring commissioning responsibility to ICBs could place Specialist Spinal Cord Injury Centres at further risk of underfunding if highly specialised SCI service deprioritised within local commissioning systems.”
This concern from SIA about the underinvestment in the current specialist spinal centres is borne out from what patients have reported, such as a ‘slippage’ in standards, a lack of capacity, resulting in delays, and the decline in the general upkeep of these centres.
It will be such a backward step to lose these centres of excellence and the national oversight of both the care of patients and patients themselves.
With concerns about a possible postcode lottery, losing specialist staff, and the underinvestment and demise of these spinal units, the major concern is the care for these complex patients if the plans happen.
For patients now, they feel there is a system that ‘has their back’ to help them achieve what they want to achieve, safe in the knowledge they have this support, not just from their nearest SCIC, but a national strategy that underpins their care.
Losing this for such complex patients will put them at risk.
R.F.Hunt is a freelance journalist, columnist and author (The Single Feather). She lives with spinal cord injuries.
