Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many and what proportion of integrated care boards have specialist clinicians for Huntington’s Disease; and whether Surrey Heartlands ICB has specialist clinicians for Huntington’s Disease.

Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as Huntington’s Disease.

Surrey Heartlands Integrated Care Board (ICB) commissions a specialist service that provides support to people with Huntington’s Disease. The service works closely with the Huntington’s Disease clinic at St George’s University Hospitals NHS Foundation Trust. As of November 2024, there are 18 full time equivalent neurology consultants employed in National Health Service trusts within the Surrey Heartlands ICB region. This is seven more than a year previously.

At the national level, there are several initiatives supporting service improvement and better care for patients with neurological conditions, including those with Huntington’s disease, such as the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services. The National Neurosciences Advisory Group developed clinical pathways for adults with movement disorders, including Huntington’s disease. This is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.