Living with Huntington’s Disease means that you are constantly having to adapt as the illness impacts what people can and can’t do and how they experience life. As healthcare professionals one of our roles is to support the planning around how to care and support our patients as their needs become greater – helping them to ‘weigh-up’ options that may prolong life and ones that may support better quality of life. Clinicians can struggle to identify when the best time to have elements of these conversations – the challenge is to ensure that someone can still communicate their wishes in advance of being in the situation, whilst ensuring that we do not prematurely add to distress through navigating these difficult conversations.

In order to develop a guide for healthcare professionals, we would really like to hear your thoughts about the following elements of planning: Nutritional Support, Care Support, Treatment in the event of a Sudden Life-Threatening Deterioration, Care at the Final Days of Life

We recognise that these can be distressing things to think about, if at any time completing this form you want to stop then this is ok, if certain topics are too difficult to think about then you do not need to fill in every section.

Answers are collected anonymously, the survey may take 10-20 minutes