The Health Bill must protect patients who depend on specialised services
5 min read
The Health Bill returning to Parliament this week is far more than an organisational restructuring.
The decisions Parliament makes about specialised commissioning could affect people across England living with rare, complex, and lifelong conditions. I believe the Bill currently lacks the statutory safeguards needed to protect national consistency, accountability, and patient safety.
In my role as the Chair of the All-Party Parliamentary Group (APPG) on Spinal Cord Injury and representing the Golden Jubilee Regional Spinal Cord Injuries Centre, one of the United Kingdom’s 11 specialist spinal cord injury centres, within my constituency I know firsthand the incredibly positive impact that such specialist services have when someone is facing a long-term condition. When someone sustains a spinal cord injury, their life changes considerably. But with the support of relentless healthcare professionals across the country, people with a spinal cord injury are able to lead a fulfilled and dignified life.
Around 4,700 people sustain a spinal cord injury each year, contributing to a total population of over 105,000 people living with spinal cord injury across the UK. In England there are eight highly specialist spinal cord injury centres, providing essential acute care and rehabilitation support. Whilst there is no doubt of the dedication of the healthcare professionals working in spinal cord injury, the Officers of the APPG and I held an inquiry last year that exposed the challenges this system faces.
Our report included recommendations that sought to stabilise the system, build resilient infrastructure, and deliver long-term transformation through a National Spinal Cord Injury Strategy. I was shocked to discover the level of regional variation and the absence of meaningful national oversight and accountability.
Spinal cord injury centres serve population catchments that extended beyond local Integrated Care Board boundaries, and even NHS regional boundaries. An internal NHS England Service Review of Spinal Cord Injury Services in 2016 even noted that commissioning decisions ‘vary substantially’ with variations leading to ‘inequalities in access and care’, finding ‘it is evident that this national service would be better co-ordinated by a national commissioner who has the authority either to commission centrally or to direct and monitor delegated regional commissioners to commission according to an overall strategy’.
But this isn’t only about spinal cord injury services. The same fundamental question arises across specialised healthcare: how do we reform commissioning without fragmenting the services relied upon by people with complex and lifelong conditions?
Around 170 specialised services provide care that cannot simply be replicated in every hospital. They depend on specialist teams, concentrated expertise and coordinated pathways that often cross ICB and regional boundaries. What Parliament decides in this Bill therefore matters far beyond the spinal cord injury community. That is why I have tabled a package of amendments to the Health Bill.
Rather than seeking to block reform to our health system, the amendments I have tabled aim to ensure that, where commissioning is transferred from national responsibility, specialist services remain safe, equitable, nationally coordinated, and accountable. Together these amendments establish four critical safeguards:
1 - Before the transfer of a service from national commissioning, an assessment of the likely impact on patient safety, outcomes, equality of access, and geographical variation must be published.
2 - If a service is then transferred, a framework must be maintained that covers service standards, care pathways, workforce requirements, outcome data, and coordination between specialist, community, and neighbourhood services.
3 - Following any transfer of responsibility, the performance of Integrated Care Boards in relation to specialised services must be annually assessed including on patient outcomes, access, workforce capacity, service sustainability, and geographical variation, and the findings must be published.
4 - A report must be laid before Parliament on the commissioning and performance of specialised services commissioned by Integrated Care Boards so that Parliamentarians across both Houses can effectively scrutinise the functioning of these services.
These amendments have the support of the Spinal Injuries Association, the Neurological Alliance, and other organisations. Between them, the organisations within these alliances represent people across a very broad range of neurological, rare, and complex conditions. Their support underlines that this is not a concern confined to spinal cord injury, but one shared across the specialised healthcare sector. I encourage fellow Parliamentarians to support these amendments.
There is also an opportunity in this Bill to improve what happens after someone receives a life-changing diagnosis. I have tabled a further amendment to the Single Patient Record provisions so that, with a patient’s consent, they can be referred to an approved voluntary or charitable organisation providing condition-specific support. For people adjusting to a complex diagnosis or a catastrophic injury, early access to specialist advice, peer support, and practical help can make an enormous difference. The Single Patient Record should not simply improve how information moves through the NHS; it should help connect patients to the support they need.
Reorganisation of our health system is a costly business. My motivation is to ensure that the Health Bill is fit for the future, alongside an NHS that is. While I still have concerns that transferring the commissioning of services, like spinal cord injury, is not appropriate, I am committed to ensuring that if transfer occurs it is safe and accountable. Specialist services are a difficult area, and Sir David Carter found that previous decentralisation led to the devolution of services that were unsuitable, financially volatile and high risk. Parliament should learn from that experience rather than risk repeating it.
I thank the minister for her engagement with me on this, and it is encouraging that the Government has recently recognised that spinal cord injury services will continue to require national-level coordination between the centres, and continue to be defined as specialised services, subject to national service specifications, commissioning policies, and national standards. But administrative assurances are not the same as statutory safeguards. Protections for patients who depend on specialised services must be clear, durable, and enshrined in legislation, ensuring national consistency, accountability, and service sustainability.
