Greater Glasgow & Clyde has become the sixth area of Scotland to formally launch a localised version of the National Care Framework for HD.
The launch at the Golden Jubilee Hospital in Clydebank saw families affected by HD join health and social care partnership staff to welcome the launch.
In a joint statement Kathryn Valentine and her son John Valentine, who has the disease, said: “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 HD is in their family it can have a devastating impact, especially when they have no idea where to turn. The HD 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. We urge everyone who cares about improving support to HD families to get behind the Framework to shape care for everyone who is impacted by this appalling disease.”
Caroline Bamforth, Board member for NHS Greater Glasgow & Clyde, said: “It is fantastic to see families and staff from all across Greater Glasgow & Clyde coming together to shape this excellent tool. Having lost my father to MND, another neurological condition, I am greatly encouraged to read that the Scottish Government is hopeful that the HD Framework might also be used to help people with similar long term conditions in the future. This is an exciting prospect and I applaud Scottish Huntington’s Association for working so collaboratively with such a wide range of partners to make this a possibility. We wish this whole venture every success.”
George Adam MSP, Scottish Government Chief Whip, member of the Scottish Parliament’s Health Committee and Convener of the Cross Party Group on Multiple Sclerosis said: “The HD Framework is a fantastic tool for local families who have been impacted by this terrible condition. It’s great to see the NHS Board and all local councils and health and social care partnerships getting behind it at today’s launch. If promoted and used effectively this can make a huge impact of people’s lives. It’s no surprise that the international HD community is seeking to follow suit. And as someone who cares passionately about MS due to the impact it has had on my wife and family it’s also encouraging to see MS charities being involved in its development and looking to it as a potential model. This is testament to Scottish Huntington’s Association’s open approach to developing this Framework, which I encourage everyone to get behind and make a success of.”
Dr Stuart Ritchie, NHS Greater Glasgow & Clyde HD Clinical Lead from 2006 – 2016, said: “My view was that – if we took the time to learn the lessons of similar work done for other conditions, and create a genuinely flexible and interactive care framework – we had a real chance of producing something that could significantly improve the care and support provided to families affected by HD. All the signs are that this is exactly where we have taken this great opportunity, resulting in what I believe to be an innovative tool that can guide health and social care professionals and empower HD families for years to come.”
The National Framework can be viewed at care.hdscotland.org . The Ayrshire & Arran, Fife, Grampian, Lanarkshire, Lothian, Greater Glasgow & Clyde, Highland and Forth Valley Frameworks can be viewed within the “Regional Frameworks” section of the site.
Work is ongoing to finalise local Frameworks for Dumfries & Galloway, Tayside & Border.