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Thurso grandfather backs Huntington's framework

By Matt Leslie

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Edwin Sinclair is giving his backing to a new framework designed to support Huntington's disease sufferers and their families.
Edwin Sinclair is giving his backing to a new framework designed to support Huntington's disease sufferers and their families.

A Thurso grandfather has welcomed the launch of the Highland Care Framework for Huntington’s disease.

Edwin Sinclair (60), who himself has the disease, said the framework would be of huge support to those in Caithness who either have Huntington's or are a relative of someone who does.

Huntington’s disease is a neurological condition that can affect a person's motor skills, thinking process and mental health.

Those affected may eventually lose the ability to walk, talk, eat, drink, make rational decisions or care for themselves, which in turn means that they will require support for most or all of their activities on a 24-hour basis.

Around one in 5000 people in Scotland have Huntington's with an estimated 4000 to 6000 at risk of inheriting it from their parents.

With the Highland Care Framework, families and health and social care staff have access to a comprehensive online register of resources designed to assist Huntington's families throughout the NHS Highland area.

It signposts up-to-date information on all the care and support that is required – including getting help with symptoms, support with finance and employment issues, and assistance for young people and carers.

The framework was pioneered by the Scottish Huntington’s Association and has been backed by the Scottish Government. It is the first of its kind in the world and has been seen as a model for Huntington's care internationally.

Speaking at Centre for Health Science at Raigmore Hospital in Inverness where the framework was launched, Mr Sinclair said: "I have been married for 40 years next year and have worked offshore and abroad as a mechanical technician for the last 30 years.

"Unfortunately, I was diagnosed with Huntington's disease when I was 58 years of age, in November 2017, and have now retired.

Huntington’s disease affects entire families from generation to generation.

"I have two daughters and two granddaughters. I have seen my grandfather, father and brother all die with Huntington’s disease.

"So often people think of a disease as affecting one person. However, Huntington’s disease affects entire families from generation to generation.

"When people find out that Huntington's is in their family it can have a devastating impact, especially when they have no idea where to turn.

"The Huntington's care framework stands to change that. Everything you need to know about the disease is all there in one place, helping and guiding families and health and social care staff.

"I would urge everyone who cares about improving support to Huntington's families to get behind the framework to shape care for everyone who is impacted by this appalling disease.

"Living in the northern Highlands, I am supporting the framework as I hope it will be able to support me and my family and anyone affected with Huntington's."

Claire Wood, associate director of allied health professionals at NHS Highland, said: "It’s fantastic to see families and staff from all across Highland coming together to shape this excellent tool.

"I would encourage anyone with an interest in Huntington's disease to make use of this to shape care and support for the better. I am delighted to formally back the framework on behalf of NHS Highland and wish it every success."

The Huntington's Disease Care Framework has been supported by the Scottish Government, all parties in the Scottish Parliament, the National Advisory Committee for Neurological Conditions, NHS boards, health and social care partnerships, health and social care staff, professional bodies, Huntington's disease family members, academics and national and international third sector partners.

The national framework can be viewed at care.hdscotland.org. The Highland version can be viewed within the Regional Frameworks section of the site.

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