Challenges and hope in life with Huntington’s

HUNTINGTON’S DISEASE is a rare condition, it is life-limiting, hereditary, and currently has no cure. You may know someone who has it or you may have heard about it during last year’s Casualty storyline when Ethan Hardy, played by actor George Rainsford, was diagnosed with the disease.

The disease affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities. Huntington’s can cause changes with movement, learning, thinking, and emotions.

Once symptoms begin, the disease gradually progresses, so living with it means having to adapt to change. Living with Huntington’s disease can be very challenging. Getting the right information and support is vital.

Due to the severe nature of it, all family members can be affected and the person living with the disease will at some point need full-time care and support. In many cases, one family member can be looking after more than one person.

As a charity which has been supporting people for 50 years, there has been much progression in drugs and research since we began, and we are hopeful a cure or more effective treatment is not too far away. Until then the disease has to be managed, within the current health care system. This year, for Huntington’s disease awareness month in May we wanted to highlight the mental impact of the disease both on the people who have it and the families who look after them. New research has identified substantial gaps in the number of specialist centres being able to access mental health professionals.

Centres treating Huntington’s disease describe access to services as “inadequate”, with many reporting that less than 25 per cent of people living with Huntington’s disease are able to access psychologists, psychiatrists, or counselling when required. Many services also report limited access to community mental health support, with some people living with Huntington’s disease excluded due to lack of awareness by health care professionals.

As Huntington’s disease is classed as an organic brain disease mental health services, particularly community mental health services often offer little or no support.

That has an understandably huge effect on families, they know they need support and they can’t access it. We know there are some community mental health teams that won’t, don’t or aren’t commissioned to see patients with Huntington’s disease.

Last year, I was pleased to be invited to consult on the Casualty storyline and following being involved in one of our campaigns last year, George Rainsford has become the Huntington Disease Association’s patron. As well as raising money for us, he does a lot to raise awareness of this disease. He has met and stayed in touch with some of the families and has openly commented on their incredible strength.

The families we work with are resilient, however, a Huntington’s disease community survey carried out last year highlighted that 69 per cent of those who are symptomatic have experienced significant problems with their mental health, with 71 per cent of carers feeling that their mental health has been severely impacted as a result of their caring responsibilities.

The Huntington’s in Mind campaign has been developed with the support of the community and centres around the stories of three families affected by Huntington’s disease.

The powerful films will be released through the month of May, and each tells the story of the mental health impact, of the challenges accessing mental health support, and of some encouraging and inspiring

The stories aim to give families a voice. Their experiences should be heard.

reflects of hope and advice. The stories we share aim to give families a voice, we firmly believe their experiences should be heard. Many find it difficult to receive equitable access to information and specialist services leading to limited physical and mental support following diagnosis.

We know people living with Huntington’s disease can often fall into a referral loop due to a lack of understanding of how their condition affects mental health. We need to do more to educate health care professionals to recognise and provide the right mental health support at the right time for people living with Huntington’s disease.

That is why we are determined to raise awareness around the mental health issues around living with the condition so that those affected feel they are adequately supported.

The Huntington’s in Mind campaign marks the beginning of a longer journey to ensure equitable access to mental health services.