To: The Secretary of State for Health and Social Care, UK Government, and NHS England

We, the undersigned patients, families and healthcare advocates are writing to demand urgent reform within the NHS for individuals living with rare and complex spinal cord conditions.

Presently, patients undergoing rare spinal cord surgery face a devastating vacuum of post-operative care. There is no suitable, structured pathway for recovery, turning post-operative care into a frustrating postcode lottery.

Many patients experience the painful reality of having undergone rare, complex spinal cord surgeries only to find no NHS pathway waiting for them on the other side. This systemic void leads directly to the escalation of symptoms and places an extreme, compounding toll on physical and mental health—not just for the patient, but for their family.

These are not isolated cases. Across the UK, countless individuals are denied the treatment they desperately need. They are left un-signposted to correct specialists and forced to navigate complex pathologies they cannot understand or manage. This chaotic system is failing: it places an unsustainable burden on local NHS services and wastes vital public funds. In the most tragic situations, vulnerable patients are left to die of preventable complications or take their own lives out of sheer desperation and isolation. 

Neurological conditions create systemic illness in the entire body, requiring specific, coordinated, and holistic pathways to prevent severe deterioration. It is fundamentally unacceptable to abandon patients facing lonely, rare, and complex conditions without a safety net. 

Therefore, we call on the UK Government and the NHS to introduce a mandatory, standardised aftercare pathway for patients after spinal cord surgery.

This pathway must include:

 Specialist Support: Guaranteed access to neuro-physiotherapy, specialist nursing, and mandatory psychological support addressing medical trauma, adjustment disorder, and chronic grief.

 Integrated Records: A cross-trust, fully integrated electronic health record system visible to all clinicians to prevent mistaken discharges caused by missing scans or evidence.

 Streamlined Re-referral: Rapid re-referral safeguards so deteriorating patients do not rejoin the back of multi-month waiting lists.

 Named Coordinators: A guaranteed named specialist coordinator or neurological nurse assigned upon discharge for direct contact when red-flag symptoms (like Autonomic Dysreflexia) appear.

 Holistic Prep: Early social care assessments, financial/benefits advice signposting, carer support resources, and clear guidance on ongoing NHS resources provided before leaving the hospital.

No one should have to fight their own body and the healthcare system at the same time. We urge the government and NHS leadership to act now before more lives are needlessly devastated.

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