New resources developed for people living with Huntington’s disease
Dr Sarah Gunn
A University of Leicester expert has been instrumental in developing new resources for health professionals, supporting people with living with Huntington’s disease.
Treatment and support relating to mental health and cognition (thinking and processing information) is vital for those who have or are living with the debilitating condition. Yet, mental health professionals often lack awareness of the condition and how to provide effective support.
Now, thanks to the Huntington’s Disease Association, which works with a range of experts including from the University, new guidance on mental health and cognition treatment and support has been developed for those working with people who have a diagnosis.
This includes a comprehensive mental health framework for supporting adults with Huntington’s disease, encompassing:
● Core principles of care through to practical clinical considerations
● Common mental health conditions
● Assessment of need and capacity
● Pharmacological and psychological interventions
● Admission to mental health units
● Broader holistic care
● Personalised care planning
The new mental health guidelines have been developed by Dr Sarah Gunn, practising NHS Clinical Psychologist at the University and specialist in neuropsychology, and Dr Akshay Nair, Consultant Neuropsychiatrist. Dr Gunn further developed the cognition guidelines, released as part of the same set of publications. Other guidelines include end-of-life care, occupational therapy, nutrition and treatment of movement disorder.
Dr Gunn, who is also Co-lead for Leicestershire Huntington’s Disease Network, a collaboration between families affected by Huntington’s disease, charity partners, NHS services and researchers, said: “Huntington’s is a rare and complex condition, and healthcare professionals may feel unsure about how best to support people living with it.
“These new sets of guidelines bring together available evidence to support informed and confident clinical practice, and cover the different types of difficulties and needs commonly seen in adults affected by Huntington’s disease.
“The mental health guidelines provide information on psychological interventions and pharmacological treatment, and have been reviewed by a community member with lived experience of Huntington’s. They’re endorsed by the European Huntington’s Disease Network (EHDN) and the Association of Clinical Psychologists (ACP-UK) and our hope is that healthcare professionals working in mental health services will use them to support adults living with Huntington’s when they need it most.
“Crucially, the guidelines advocate for tailored support to meet people’s needs, rather than a prescriptive approach to help manage a range of symptoms. The guidelines are intended to support and complement existing guidance, providing Huntington’s specific information to inform best practice from a compassionate and person-centred perspective.”
Dr Nair added: "Huntington’s Disease (HD) is a devastating neurodegenerative condition associated with a range of mental health problems which cause significant distress to both people with HD and their families. Despite this, people with HD struggle to get timely access to mental health support. Through these guidelines we hope to both educate and empower teams looking after patients with HD to assess, monitor and treat these symptoms earlier and more effectively.”
David Stephenson Head of Policy and Public Affairs at the Huntington's Disease Association, said professionals often had limited experience of its impact.
He said: “These guidelines, developed by leading specialists in neuropsychiatry and clinical psychology, and endorsed by the ACP-UK and the European Huntington's Disease Network, gives practitioners the knowledge they need to offer effective support. We are proud to champion resources like this as part of our commitment to build a better life for anyone affected by Huntington’s disease."