To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that Huntington’s disease patients receive (a) more options, (b) better support, and (c) joined-up care through the NHS Long Term Plan.
10 February 2021
The Government is committed to improving the lives of those who live with rare diseases. 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.
NHS England continues to consider the impact of COVID-19 on patients with rare diseases and look at what services can continue to be delivered successfully through virtual communication technology such as telephone consultation and videoconferences. Where services do need to be delivered face-to-face, including the diagnosing of new cases, NHS England will work with providers to ensure that patients have a safe journey through the hospital to the treatment area.
The Government published the new United Kingdom Rare Diseases Framework in January 2021. The new Framework provides the high-level direction for rare diseases in the United Kingdom over the next five years, including four priorities that were identified using results from the 2019 National Conversation on Rare Diseases: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care; and improving access to specialist care, treatment and drugs.
The Framework will be followed by nation-specific action plans that will be developed in close consultation with stakeholders, including patient representative groups such as Genetic Alliance UK, of which Huntington’s disease Association are a member. The plans will also be supported by the continued delivery of the NHS Long Term Plan, as well as recent publications such as Genome UK which outlines the future for improving support for those with genetic rare diseases.