To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of whether a clinical guideline on care for people who have Huntington's disease is needed.
7 September 2022
There are no national guidelines for the diagnosis and management of Huntingdon’s disease. The Department has made no assessment on the clinical guideline on care for people who have Huntington's disease. However, the neuropsychiatry service specification is in development, which when finalised, will outline the multi-disciplinary approach to caring for patients with complex neurological conditions including Huntington’s Disease who require specialised assessment and mental health support.
NHS England’s neuroscience transformation programme (NSTP) is developing a number of optimal pathways for neurology services which includes Huntington's disease. Following extensive stakeholder engagement, the NSTP is developing a new definition for ‘specialised’ neurology and a model for neurology services. This will make it easier for integrated care systems (ICSs) to reduce the inequalities of access and bring specialist knowledge and skills into the patient pathway much earlier. It will help speed up the process for initial diagnosis for patients and whenever specialist interventions are indicated along a patient journey, enable that to be made available closer to the patient rather than predominantly at the specialist centres.
The Government remains committed to achieving parity between mental and physical health services and to reducing mental health inequalities with investment in National Health Service mental health services continuing to increase from almost £11 billion in 2015/16 to £15 billion in 2021/22. While no assessment has been made for people with Huntington’s disease, there is work underway to review the Clinical Genomic Service Specification which includes the need to strengthen access to mental health support services. The revised specification will be subject to public consultation before receiving final approval. The NSTP includes developing optimal pathways for neurology services, which also includes common principles regarding access to appropriate timely mental health support.
In the last five years, the National Institute for Health and Care Research (NIHR) has funded two studies into Huntington’s disease with a total award value of £316,267 and supported the delivery of 39 studies relating to Huntington’s disease via the Clinical Research Network infrastructure. The Government has also committed to invest at least £375 million in neurodegenerative disease research over the next five years to fund projects into a range of diseases, including Huntington’s disease.