9 November 2022
Dunne calls for national guidelines for Huntington’s disease support

Speaking in a debate on Huntington’s Disease, Philip Dunne calls for the National Institute for Health and Care Excellence to establish national guidelines to allow consistency of support throughout the country.

Philip Dunne (Ludlow) (Con)

I add my congratulations from the Government side to the right hon. Gentleman on securing this debate and raising awareness of this appalling condition, and on his very powerful speech. He is talking about the support services available to the families and victims of this disease; because there is no national guidance, that is now a matter for the individual integrated care boards, which have replaced clinical commissioning groups. Does he agree that one of the outcomes of his securing this debate might be that the Minister commits to at least consider encouraging the National Institute for Health and Care Excellence to establish national guidelines to ensure consistency of support throughout the country?

Hilary Benn 

I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out.


The Minister of State, Department of Health and Social Care (Helen Whately)


The right hon. Gentleman also spoke about NICE guidelines, as did my right hon. Friend the Member for Ludlow and the shadow Minister, the hon. Member for Leicester West (Liz Kendall), and it is true, as was stated in the answer to his parliamentary question, that there is no NICE guideline specific to Huntington’s. In advance of this debate, I looked into that, and the expert view that I have been given is that Huntington’s sits under a recent NICE guideline on a range of neurodegenerative conditions that are grouped together, albeit that we recognise the differences in progression, prevalence and severity of those conditions. That said, I have heard the argument made by the right hon. Member for Leeds Central, and I will ask again about the case for doing something more specific to Huntington’s.