Professor Jonathan Benger CBE
National Institute for Health and Care Excellence
2nd Floor, 2 Redman Place
London
E20 1JQ 

May 2023 

Dear Jonathan, 

Implementing NICE guidelines for Huntington’s disease 

I’m writing to highlight the need for specific NICE guidance to be developed on Huntington’s disease. 

Huntington’s disease (HD) is a rare, genetic, neurodegenerative disorder that affects 8,000 people in the UK and up to 32,000 people live at risk of developing it. Since this complex disease is not fully understood, there is no cure and only limited treatment options are available to help manage symptoms.  

One of the biggest issues is the lack of consistent, coordinated healthcare services across the country and the general lack of knowledge about HD among professionals. There are currently no NICE guidelines for HD so specific guidance would be transformational for those affected by the condition. 

On top of navigating life with an incurable disease, the Huntington’s community faces significant challenges in accessing the support, services, and guidance they need to live the best life possible. In part, this is because many of the professionals involved in supporting those affected by this condition have no knowledge and understanding of the disease and may never have treated someone with the condition before. That is why I’m writing to request for NICE to produce specific guidelines for HD, so that patients, families and carers and health professionals have a clearer understanding of the care pathway for this complex condition. 

NICE guidelines for HD would help to drive up the quality of care for patients and would tackle inequality of access to services. They would also build confidence in future generations who may have the condition in adulthood that they will receive adequate care.  

I look forward to receiving your response. 

Yours sincerely, 

Rachel Hopkins MP 
Member of Parliament for Luton South