Ms Patricia Towey:

It was mentioned in the submission that people receive care when it is too late and their function has already deteriorated. A basic matter for Huntington’s’ disease sufferers is that they maintain their body weight as it can improve function. However, due to apathy and lack of initiation, many people are not capable of even managing that. That is why it is essential to get timely support and to have specialist clinics that can provide a reference point for other caregivers in the community, as well as providing a clinical care pathway so people can get the treatment they need when they need it. The long-term burden for family carers is extensive over generations. They also need specific support.