Improvements in care for Huntington’s disease are gaining momentum

Written by: John Eden, Chief Executive, Scottish Huntington's Association

Published: 22/04/2014

Progress made in fighting this Huntington's but there are many challenges still ahead.

There are few diseases that require the care of so many professionals and that have such a devastating impact on the families of those living with it than Huntington’s disease. Probably even fewer that continues to have such low levels of understanding among the general public.

It was partly to increase awareness of the condition but more importantly to improve care for those living with it that the Scottish Huntington’s Association was set up back in 1989.

Since then we’ve made significant progress in both these areas.

We remain the only charity in the country supporting families living with Huntington’s disease, a hereditary progressive condition that causes changes to muscle control, thinking processes and can cause long-term mental health issues.

Symptoms start to manifest between the ages of 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages.

Each child of someone diagnosed with Huntington’s disease is at 50% risk of developing the condition themselves. And there is currently no cure.

Now this may seem like a grim prognosis for anyone affected, but the fight to conquer the disease is gaining pace with new research developments every year offering hope.

On the care side we are also taking great strides in both the provision of care and the quality of that care across the whole country.

This autumn sees the launch of the UK’s first degree level course for those caring for people with Huntington’s disease in partnership with the University of Stirling. This will be open to professional and family members with interest in improving Huntington’s disease care and will bring some academic rigour and practical consistencies to levels of care.

Also in care improvement, in Broughty Ferry, we have just accredited the country’s first care home specifically for their expertise in caring for Huntington’s disease patients in the latter stages of the disease. This is hugely important for families anxious to see their loved ones getting the best care available and is a programme we will be rolling out in other areas.

We now have a geographic spread of Huntington’s disease specialists that cover the whole country and will continue to press for even more resources to improve the quality of life of patients. The debilitating nature of the condition means the majority of people affected rely on benefits and we are currently working on a new project to support them with financial management and planning.

Our Youth Service, the world’s first and the model that other countries follow, is developing a range of materials to better explain how the condition affects families to young people. Through better awareness raising to all we are slowly eroding the stigma around Huntington’s disease.

We will strive to continue this progress over the next 25 years to find better ways to manage the condition until eventually a cure is found.

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Scottish Huntington’s Association

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