“Trusting, good people are being allowed to lose their sight”

In response to a Freedom of Information Act request by Optometry Today, NHS England revealed that there have been 551 reports to the National Reporting and Learning System that mention sight loss due to delayed outpatient appointments, or similar phrasing, since 2019.

Of those reports, 120 incidents involved moderate harm, 99 incidents involved severe harm while one case in 2020 related to a patient who died. There were 144 cases where a low level of harm was reported, and 187 cases involving no harm.

One incident report described a patient with wet age-related macular degeneration (AMD) who lost useful vision in their left eye after their injection treatment was delayed. The patient was meant to have monthly injections but presented at clinic after three months had passed without receiving an appointment.
 
Another patient experienced a delay of a year from their appointment at eye casualty to being seen within the medical retina clinic. During this time their vision dropped from 6/4 to 6/24.

In a third case, a clinician reported that after a four-month follow up appointment was recommended, a patient received their appointment one year and four months later. At this appointment a total retinal detachment was diagnosed.

“It is very unlikely that the vision will be regained,” the clinician reporting the incident noted, adding that this loss of vision would affect the patient’s career as a paramedic.

1 “It is incredibly sad to see these cases”

In December, Macular Society chief executive, Cathy Yelf, shared that staff had received more than 25 calls in the past three months from people who were worried that they are going to lose vision because of delays.

“They are terrified at the prospect of losing vision. The ones who contact us are the ones who are actively trying to solve the problem. We have no idea how many people sit at home, quietly losing their vision and not making a fuss about it,” she shared.

She noted that there are good treatments available for wet AMD but at the moment many trusts do not have the capacity to deliver injections in a timely manner.

“It is an absolute tragedy when delays in the system means that people lose their sight when they didn’t need to,” she shared.

“Losing sight is a devastating thing. To lose your sight when it didn’t need to happen is doubly devastating,” Yelf said.

Yelf spoke to one patient in England with wet AMD whose vision was changing and was unable to secure an injection appointment. The man went to the eye clinic and refused to leave all day.

“They got security to try to get him out. He wasn’t being violent or abusive – he just said ‘I’m not going until I get an eye injection’,” Yelf said.

After leaving the hospital at the end of the day, the man received an injection appointment for the following morning. Yelf emphasised the need for a national plan for eye health in England.

“We know there isn’t a magic wand for this. There are many things that need to change to make this better. Our view is that some of these things are systemic, national issues that can’t be resolved by local commissioning decisions and local reorganisation,” she said.

“Optometrists are very skilled eye care professionals who could help to solve the problem of delays within the NHS, but they need to be commissioned and paid to do it,” Yelf added.

President of the Royal College of Ophthalmologists, Professor Bernie Chang, shared that a lack of capacity is the underlying issue behind delays.

“There needs to be an expansion of the primary and secondary care workforce,” he said.

Chang called for an increase in the number of ophthalmology training places as well as supporting efforts to upskill other professions in the multi-disciplinary eye care workforce.

“Enabling direct optometry to hospital referrals as well as connected electronic patient records and IT will also be needed,” he said.

2 “The staff say ‘See you in six weeks’ but it doesn’t happen”

In Wales, founder of the Tenby Macular Support Group, Val Robinson, 79, shared with OT that she had waited 11 weeks for her last two wet AMD injection appointments – almost twice as long as the usual wait of six weeks between appointments.

“The deterioration is sad. I could read way down the eye chart before. Now I can only read four letters in my bad eye,” she said.

Robinson is quick to highlight her gratitude for the staff at Withybush Hospital, where she receives her treatment.

“The staff in the clinics are amazing, kind and brave. They worked throughout the pandemic on the frontline and we were all so grateful for that,” she said.

But she now wonders what NHS founder Aneurin Bevan would think of the service that is being provided.

“Trusting, good people are being allowed to lose their sight,” she said.

While many people were hesitant to receive their injections during the COVID-19 pandemic, Robinson continued to attend her appointments – on one occasion her husband drove her for two hours to Aberystwyth for an appointment.

“A lot of people didn’t go during the pandemic because they were scared. I was more scared of losing my eyesight,” she said.

Robinson said that for the first two weeks following an injection the leakage in her eye dries up and she can see “substantially more.”

“That lasts for a while, then as you are coming up to six weeks, the leaks begin and your vision starts to go again,” she said.

Robinson questioned whether the service delivered to patients was led by financial considerations rather than by patient needs.

3 “The thought of losing your eyesight can affect your mental health”

Fellow Tenby Macular Support Group member, Christine Graham, 83, has also seen the time between her injection appointments close to double.

“What people don’t realise is that the thought of losing your eyesight can affect your mental health. That can’t be seen – people don’t know you’re suffering,” she said.

The deterioration in her vision since Graham was diagnosed six years ago has meant that she has difficulties recognising people until she is close to them, and she has challenges with hand-eye coordination. She gave up her driving licence two years ago.

She told OT that the thought of losing her sight completely is “horrendous.”

“I’m not sure I could cope if I lost my sight. I have a large family but you don’t want to put on anyone,” she said.

4 “It’s going to cause more trouble in the long-run”

Tenby Macular Support Group member, Joyce Cameron, 88, stopped receiving treatment for wet AMD during the pandemic. She did not experience delays in receiving injections when she was receiving treatment.

“It wasn’t too bad then because we were still in the middle of COVID-19 and people weren’t going in to get their injections,” she said.

Cameron thinks that failing to address treatment delays will exacerbate issues within the NHS.

“It’s going to cause more trouble in the long-run because more people will have serious problems with their eyesight,” she said.

Workforce challenges within the NHS means that there are no easy solutions, Cameron added.

“I think it’s awful, but what can they do about it if they don’t have the staff?” she said.

“I feel sorry for people who can’t get these injections and are so worried about it,” Cameron observed.

5 “It is absolutely tragic”

Responding to the findings reported by OT, AOP chief executive, Adam Sampson, said: “It is absolutely tragic that people should lose their sight due to a systemic issue and reasons that are completely preventable. There isn’t a silver bullet for many of the problems facing the NHS but with a national plan for eye care some of these challenges can be overcome to improve care and outcomes for patients.”

Emphasising the role optometrists could play in supporting the reduction of NHS wait lists, Sampson highlighted: “Part of the solution is working smart – optometrists are expertly trained, poised to help, but they’re underutilised in many parts of the country simply because of the way eye health care is commissioned and funded.”