Giving patients with Huntington’s disease the care they need | HSJ Interactive

Read the detailed report here.

This roundtable was moderated by HSJ but commissioned and funded by Roche Products Ltd who reviewed it for compliance with the ABPI code. Other than that, HSJ retained copy control

Work bag number: M-GB-00007752

Date of preparation: May 2022

Huntington’s disease is an inherited neurodegenerative disease that is currently incurable but can affect patients for up to 15 years between diagnosis – usually in midlife – and death. As a rare disease, it may attract relatively little attention from commissioners, but can be devastating for patients and their families.

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With profound personality changes and mental health issues, patients often need significant support from NHS and social services. This can encompass mental health but also physical health services, as muscles are affected and weight loss is common. They are also prone to sudden deteriorations in condition with challenging behaviors that caregivers may struggle to cope with.

And it’s entire families that are affected – from decisions about genetic testing and potential diagnosis, to family careers having to give up work due to the demands of caring for someone with the disease.

But services often vary across the country, and patients can sometimes be diverted from generic services because they have a Huntington’s diagnosis.

An HSJ Roundtable, commissioned and funded by Roche, explored some of these issues and looked at possible solutions.

HSJ Contributor and Chair Claire Read asked panelists a key question: “What needs to be done to ensure that every patient with Huntington’s disease receives the care they need when they need it?


  • Pierre CharpentierDirector of Service Delivery, Kent Surrey Sussex Academic Health Science Network
  • Dr Sian JonesGP, Surrey
  • Dr. Nayana NahirConsultant Clinical Geneticist, St George’s University Hospitals Foundation Trust
  • Professor Hugh RickardsConsultant in Neuropsychiatry, Birmingham and Solihull Mental Health Foundation Trust and President, Huntington’s Disease Association
  • Catherine StanleyCEO, Huntington’s Disease Association
  • Professor Adrian Williams, Chair of Neuroscience Clinical Reference Group, NHS England; and Consultant, University Hospitals Birmingham Foundation Trust
  • Claire Read, HSJ contributor – chair of the round table

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