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

Sir/Madam,

Huntington’s disease is an inherited condition that damages the brain over time, robbing those impacted of their ability to walk, talk, eat, drink and care for themselves.

Families who have this disease visited upon them require specialist support from those who understand the condition. For the last 35 years the source of that specialist support has been our charity, Scottish Huntington’s Association.

When the current UK administration came to power but a few months ago promising “change” without increasing taxes on “working people,” who would have predicted this would entail hammering charities such as ourselves with eye-watering National Insurance increases. And, by extension, families whose lives are blighted by this appalling, complex and extremely difficult to manage condition who are without doubt amongst the most vulnerable, needy and marginalised in our society.

The entire charity sector is increasingly burdened by climbing costs, funding issues, recruitment and retention challenges and an increased demand for services.

All too many have had to close their doors, with more expected to follow. Additional burdens being imposed by government at this juncture are as helpful as a vigorous kick in the spleen.

Coming just weeks after the prime minister announced a “new partnership that can harness civil society’s full potential” this must surely be an unfortunate oversight, and one that simply cannot be allowed to stand given the scale of its implications for the not-for-profit sector and the many thousands of people who depend upon it in the absence of alternative statutory services.

Sincerely,
Alistair Haw
Chief executive officer
Scottish Huntington's Association