Leading alliances urge clarification on impact of proposed NHS reforms on neurological and rare condition services
03/04/2025
On behalf of their collective membership of over 200 organisations, Genetic Alliance UK, The Neurological Alliance, and the Specialised Healthcare Alliance have written to Health Secretary Wes Streeting MP and NHS England Chief Executive Sir James Mackey, seeking urgent clarification on details regarding the proposed reintegration of NHS England into the Department of Health and Social Care (DHSC).
The letter urges Government and NHS England to provide further detail on how key services and initiatives for people affected by neurological, genetic and rare conditions will be protected during the reorganisation.
Ensuring continued commissioning expertise
A significant concern revolves around the future of commissioning expertise and capacity, in light of the proposed reforms and cuts to Integrated Care Boards (ICBs).
From April 2025, ICBs will take on greater responsibility for commissioning services, including key services for people affected by neurological conditions. Around 80 specialised services (known as highly specialised services), including many critical to people with rare and neurological conditions, have been deemed unsuitable for delegation to ICBs and will remain nationally commissioned.
It is crucial to understand what assessment has been undertaken to guarantee the uninterrupted operation of these services and what the future commissioning approaches will be to maintain their effectiveness.
Maintaining robust clinical advice within services
The proposed 50% budget cuts to ICBs, coupled with significant reductions to headcount within DHSC, together with the abolition of NHS England, raise serious questions about the capacity to maintain and improve services.
The proposed changes could also put at risk crucial national clinical leadership roles in adult neurology, neurosurgery, and spinal surgery. Losing this level of expertise could be highly detrimental to future service development and the quality of care for those with neurological conditions. We hope that clinical leadership is a key feature of any new structures.
Ensuring continuity of progress
The alliances urge for areas of progress not to be destabilised by the reforms. For example, the Genomic Medicine Unit, which is currently working to integrate genomic medicine into routine care, faces an uncertain future. Similarly, the national neuroscience transformation program, crucial for service improvement risks being wound down. The National Disease Registration Service (NDRS), essential for data collection on rare conditions and healthcare efficacy, requires urgent clarification on its future funding and staffing.
Guaranteeing patient and public voice in decision-making
It is essential that people affected by these conditions are given a voice in shaping future services. Decision-making and service commissioning should be informed by the experiences of those living with genetic, rare, undiagnosed and neurological conditions to ensure services meet their needs. How this will be integrated into NHS services in future is unclear.
Call for continued commitment to the UK Rare Diseases Framework
The UK Rare Diseases Framework and associated national action plans have played a key role in driving improvements for people living with rare conditions. The framework needs to be renewed and sustained to maintain progress.
A call for clarity and collaboration
Together Genetic Alliance UK, The Neurological Alliance, and the Specialised Healthcare Alliance, have requested an urgent meeting with the Secretary of State for Health and Social Care and NHS England leadership to clarify the reforms’ impact and develop a clear plan to safeguard and improve services for people affected by rare, genetic and neurological conditions.
Read the full letter here.
