The House | Protecting a national legacy: why spinal cord injury care must not be fragmented

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It is a day to celebrate the resilience of the community and to raise awareness of a condition that is truly life-altering, occurring every two hours in this country. But this year, the day carries a heavy weight of urgency. As the Officers of the All-Party Parliamentary Group (APPG) on Spinal Cord Injury, we are using this occasion to issue a stark warning, the very foundation of specialist care in England is under threat from a proposed administrative shift that risks dismantling decades of clinical excellence.

Last year, our APPG published a landmark report, From Fragmented to Coordinated: Building a National Spinal Cord Injury Strategy. Our inquiry heard from hundreds of patients, clinicians, and charities who described a system that has tragically “vacated” its position as a world leader. We found that SCI care in the UK is currently a “postcode lottery”, defined by complexity, inconsistency, and dangerous delays.

The findings were sobering. Despite the tireless work of healthcare professionals, only one in five patients referred to a specialist SCI centre are actually admitted for rehabilitation. Many are “lost” in the system, repatriated to local hospitals that lack the specialist knowledge to manage life-threatening complications like Autonomic Dysreflexia. We found that 20% of patients are being discharged into care homes, not because they need that level of clinical care, but because they are effectively homeless due to a lack of accessible housing.

Our report was clear, to fix this we need less fragmentation, not more. We called for a National Strategy to stabilise the system and embed national standards.

Instead of the national coordination we recommended, NHS England has announced plans to transfer the commissioning of adult and paediatric SCI services away from national oversight. By April 2027, responsibility for planning and funding these highly specialised services is set to be handed to 36 individual Integrated Care Boards (ICBs).

Under this new model, funding will be allocated to regional offices, known as Offices for Pan-ICB Commissioning (OPICs), on a “weighted capitation” basis. In plain terms, this means funding will be distributed based on local population size rather than the specific, complex needs of a rare patient group.

The issues this decision will cause are profound. SCI is a low-volume, high-complexity condition. It requires a “critical mass” of expert knowledge that local boards simply do not possess. By splitting commissioning among multiple ICBs, we risk deepening the very inequalities our report sought to end.

The threat to our Specialist Spinal Cord Injury Centres is particularly acute. If their funding becomes dependent on dozens of separate local negotiations, these centres face financial uncertainty, workforce depletion, and the very real risk of closure.

When specialised services are forced to compete for resources against local priorities like GP access or A&E wait times, rare conditions almost always lose out. The result will be a fragmented pathway where the quality of your life-long care depends entirely on your postcode.

We want to be clear, everyone is against this decision. In a recent meeting facilitated by Spinal Injuries Association (SIA), clinical, senior leaders from every SCI centre in the country expressed “serious concern” and frustration that they were not even consulted on these plans. Charities SIA, Aspire, and Back Up have joined clinicians in an open letter to the Health Secretary, Wes Streeting, urging him to intervene.

This is not a partisan issue, it is a clinical and moral one. As a cross-party group of MPs, we have already met with Ministers and the Department of Health and Social Care (DHSC) to demand that SCI services remain nationally commissioned. We are calling for the 2022 SCI Rehabilitation Standards to be made mandatory, ensuring a consistent framework of care across the country, regardless of any administrative changes.

The UK pioneered the global gold standard for spinal cord injury care. We cannot allow that legacy to be traded for administrative convenience. People living with SCI do not need multiple different local plans, they need one national vision that connects the parts and ensures no one falls through the cracks.

We need closer, better-coordinated services that are led by national expertise. We urge the government and NHS England to listen to the experts, the charities, and most importantly, the patients. Specialist care must stay national. Anything less is a betrayal of the 105,000 people who rely on these services for their dignity, their independence, and their lives.

Andy McDonald MP is chair of the APPG on Spinal Cord Injury. John Glen MP, Helen Morgan MP and Gill Furniss MP are officers of the APPG.