A letter to the editor from Alistair Haw, chief executive officer, Scottish Huntington’s Association

Sir/Madam,

Members who had the sense to vote down Edinburgh IJB’s short-sighted proposal to axe funding to 64 charities serving the city are to be congratulated (TFN, 4 Nov: https://tfn.scot/news/future-funding-still-in-doubt-for-edinburgh-charities).

While someone in an office block looking at a spreadsheet with no insight into the services in question may well view cutting this funding as a quick way to save money, the degree to which this would be a false economy can hardly be overstated.

It is akin to a transport firm 'saving money' by deciding not to service, MOT or insure its vehicles. The warm glow on day one would soon wear off from day two onwards when the inevitable and significantly more expensive calamitous implications start to pile up.

Huntington’s disease is an inherited condition that damages the brain over time, robbing those impacted of their ability to walk, talk, eat, drink, make rational decisions and care for themselves. It is arguably the most complex and difficult to manage conditions known to mankind. Families who have this disease visited upon them require specialist support from those with experience and understanding of these complexities.

Due to the vacuum of such statutory services, for the last 35 years the source of that specialist support has been Scottish Huntington’s Association. That’s why statutory providers fund us. We provide an essential service they can’t.

Charities such as ourselves are the fence at the top of the cliff that diminish the requirement for emergency support at the bottom.

Funders considering removing that fence do so not only at their own peril but, more importantly, at the peril of the most vulnerable, needy and marginalised people in their own communities who would then flood their ill-equipped, overrun and significantly more expensive acute and emergency services.

Best wishes,

Alistair Haw
Chief executive officer
Scottish Huntington's Association

_{Main image by Ronnie Leask - full details re available at: https://en.wikipedia.org/wiki/City_of_Edinburgh_Council#/media/File:Edinburgh_City_Chambers.jpg}