Rare Retinal Disease

Steve Darling Excerpts

Thursday 23rd January 2025 Westminster Hall

[Steve Darling (Torbay) (LD)]

It is a pleasure to serve under your chairmanship, Dame Siobhain.

I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. He rightly highlighted how inspirational it was to see Chris McCausland winning “Strictly Come Dancing” a few weeks ago. Chris McCausland shared three words at the end of that journey: “opportunity, support and determination”. Those play out well in respect of the challenges we face, which the hon. Members for Strangford and for Leicester South (Shockat Adam) unpacked extremely well.

At an event last night hosted by the all-party parliamentary group on eye health and visual impairment, a gentleman with retinitis pigmentosa told us that when he was diagnosed at the age of eight, his mother was taken aside and told, “This child should be sterilised at a certain age. That is the best way of sorting out this condition.” That is absolutely horrific, and I am heartened that, a little under 50 years later, the world has moved on.

My visual impairment was diagnosed about 45 years ago. I suffer from Stargardt disease, which is one of the two significant areas in terms of inherited conditions. I was deeply upset as a young lad, mostly because I was not able to be a lorry driver; I idolised my father, and that was my aspiration.

Visual impairments have a significant impact on people’s ability to fulfil their aspirations, as colleagues have highlighted, but they also impact opportunities. Twenty-five thousand people across the United Kingdom are affected by such conditions, and 75% of people registered blind are sadly unemployed, so we are condemning people who have drawn from the lottery of life; they are very much more likely to be unemployed than other people in their communities.

I have discovered that the cost of such conditions is £500 million a year, in a number of different pots. That includes not just the cost of medical intervention, but the cost to society of supporting each individual. Some 95% of these hereditary conditions are untreatable, potentially until the not-too-distant future.

The hon. Member for Strangford laid out the challenges for NICE. We are in a perverse situation at the moment—almost an anti-Goldilocks situation—where one falls between two stools: it is a rare disease, but it is a relatively common rare disease, and therefore does not fit within the ultra-rare criteria, so one falls between two stools. I hope the Minister will give serious consideration to the two conditions—retinitis pigmentosa and Stargardt’s—where significant numbers of people will be impacted by falling between those two stools. I reflect again on the words of Chris McCausland: give us opportunity, support and determination.