Am I going to have sight this time next year?

Kristian Shearan was born with a rare, genetic eye condition and said delays to his care have caused additional worry for his future

Specialist eye care in Wales has made huge leaps over the last two decades, yet the resources have not kept up, specialists claim.

A new report by a committee of politicians said more than 80,000 patients at greatest risk of permanent sight loss are waiting too long for sight-saving treatment.

Kristian Shearan said he waited years for treatment that could help stall the progression of his sight loss, because of staffing and funding issues.

"It can be quite stressful worrying how am I going to be this time next year? Am I going to have sight?" he said.

The Welsh government said it welcomed the report, is considering the recommendations and "will respond formally in due course".

The 50-year-old from Bridgend was born with a rare, genetic eye condition which has deteriorated over the past 18 years, and his 22-year-old daughter has also inherited.

"I've gone from being able to read standard size print, to a few letters at a time going across the screen," he said.

His experiences with NHS eye care chimes with many of the findings of the health and social care committee's report into ophthalmology care.

The committee has warned that without urgent action and sustainable investment, more patients are at risk of losing their sight unnecessarily.

A strategy for ophthalmology was published last year by the Welsh government, including reform to tackle long waits and staff shortages.

However, the committee said progress had been slow, particularly around creating regional services.

Kristian was a member of a running club for many years but had to stop because of his reduced vision in 2017

"I don't think there's an eye unit in Wales that is really fit for purpose," said Rhianon Reynolds, a consultant ophthalmologist and Llywydd of the Royal College of Ophthalmologists in Wales.

She said Wales was unable to meet the demands for services because of "people, places and money".

"Historically, ophthalmology 30 years ago was relatively small," she said.

"The treatment options for patients were very limited so it was a relatively small specialty.

"Since then there's been an exponential growth in treatment of eye disease, which means that far fewer people are losing vision permanently and being quite significantly disabled by that.

"But our estates and the way we're working is still constrained by what we were doing 30 years ago.

"The significant growth in the people we're able to help hasn't been reflected in expansions in workforce and and estates across Wales."

The report heard evidence that some services had "regular problems with leaks from toilets above into clinical areas" while others had "ivy growing through walls and a roof that requires buckets when it rains".

Kristian said as a young man he tried all sorts of sports but as his field of view deteriorated, he had to give up many of them

Mrs Reynolds said competing demands on health boards had meant there was a frustrating lack of progress on regional working.

But she suggested the 80,000 figure referenced in the report could be the tip of the iceberg, as those patients already in the system will also need follow-up care, but are not included in published data.

"We already know they're at risk of vision loss. So to us that is the more scary number - the patients waiting on a follow-up outpatient waiting list, because they can be waiting an awful long time."

For Kristian, staff shortages meant local care was put on hold when his consultant retired and was not replaced for over a year, and a lack of specialist care in Wales for his specific condition meant a lengthy wait for funding to be approved for treatment in England.

"I put three formal complaints in and only then did things start to move," he said, explaining the frustrations in knowing he was eligible for treatment that could delay further deterioration.

"Losing my eyesight is the worst fear – trying to wrap your head around going from doing lots of sports, to doing nothing at all and struggling to read emails, that's the biggest worry."

As a young Kristian played football, judo and completed the London Marathon three times, but in 2018 his sight noticeably started to change.

"The easiest way to explain it is like an old television at night when all the channels are turning off and you've got loads of little black and white grey spots and loads of pixeling - my vision is like that on a daily basis," he said.

His daughter has inherited the condition, and while she manages well at the moment, bright lights and small print can be challenging.

"If I'm having this sort of hassle to try and have small procedures done now and I've got to chase people constantly to just get things going for myself, how is she going to fare maybe in 10 or 15 years' time?," he said.

How long are the wait lists for eye care?

Specialist eye care – ophthalmology – has the highest number of patient pathways waiting treatment in Wales, and the second greatest number with waiting times exceeding 53 weeks, the report said.

Patients in Wales are given an individual target date for treatment, based on their condition. The target for health boards is to see 95% of those at highest risk, within their clinical waiting time.

However, in January 2025 more than 80,000 patients with the greatest risk of permanent sight loss were waiting longer than their target date for sight-saving treatment.

Wales has 1.97 consultants per 100,000 population, which is below the "at least three per 100,000" recommended by the royal college. Demand is also predicted to rise 40% over the next 20 years.

The report pointed out that at primary care huge investment has been made so that greater use is made of high street optometrists, meaning more work can be done closer to home, without the need for hospital referrals.

However, bodies representing the profession told the committee the IT systems used by primary and secondary care are not compatible, leading to duplication, delay and inefficiency.

Chair of the Senedd's Health and Social Care Committee, Peter Fox MS, said: "Half of all sight loss is avoidable with early detection and timely treatment.

"Yet thousands of people are living with the fear of losing their sight because they are not being seen on time. We are so grateful to patients who shared their stories with us – their experiences must be the catalyst for urgent change.

"The blueprint exists – now it must be put to work. This means clear accountability, proper investment, and a relentless focus on patient safety and experience. Without this, the transformation of eye care services will remain incomplete.

"This is about protecting people's sight – and their quality of life. The Welsh government must act now."

Additional reporting by Siwan Richards