To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) raise awareness of Huntington’s Disease among (i) NHS leaders and (ii) general healthcare professionals and (b) help them to provide services that support people with that disease.
To ask the Secretary of State for Health and Social Care, what recent discussions he has had with representatives of Huntington's Disease UK; and if he will make a statement.
To ask the Secretary of State for Health and Social Care, what steps he has taken to support Huntington’s Disease awareness month; and if he will make a statement.
We are committed to improving the lives of those who live with rare diseases including Huntington’s disease. We published the new United Kingdom Rare Diseases Framework in January 2021. The new Framework provides the high-level direction for rare diseases in the UK over the next five years and increasing awareness of rare diseases among healthcare professionals is identified as a key priority.
The Framework will be followed by nation-specific action plans, developed in close consultation with stakeholders, including patient representative groups such as Genetic Alliance UK, of which Huntington’s disease Association are a member.
Patients with Huntington's disease have access to a range of services, including the services of their general practitioner, associated health professionals, neurology services, occupational therapy, speech and language therapy, local mental health services for patients and their families, palliative care where appropriate and online resources. NHS England also commissions neuropsychiatry services for adults and children which provide assessment and treatment for patients with conditions such as young onset dementia including Huntington’s disease.