Julie Pilgrim cried when she heard husband Brian was going blind. "We had been so active, cycled miles, saw the Lights, played football, gone on holiday, Brian loved to play snooker
Today Brian, who developed age related macular degeneration in his early 50s, is a client of N-Vision, which supports 2.5k people living with sight loss across Blackpool Fylde and Wyre.
Monday (Sept 23) marks the start of of National Eye Health Week and Brian's advice is - get a sight test, make it regular, a routine.
Fifty per cent of sight loss is avoidable, preventable, controllable.
Wife Julie is now a volunteer for the resort-based charity which has helped them and supports, in turn, other new referrals such as Karen Hudson, whose peripheral vision is reducing.
They have found friendship, support, a focus for each day, on a journey of acceptance.
"I was in denial," says Karen Hudson, who lost her dad and her peripheral vision in a matter of months, and had to cope with the sense of bereavement for both.
"I went to an information day at N-Vision, met Julie and Brian, and realised I wasn't alone. I began to accept what was happening to me. Others don't. For some of us sight loss is inevitable. For others you have a chance to save it. Take it. Before it's too late."
For every statistic related directly to sight loss - and they will come thick and fast over coming days - it's easy to overlook the associated thousands, millions, watching, waiting and worrying.
"Brian is directly affected," says Julie. "But so am I. For every statistic there may be a loved one, friends, family, whose lives also change forever."
Forty one thousand people live with sight loss in Lancashire. And the figure is set to rise by 25 per cent by 2030. Again, half of it avoidable. We can't say it enough.
At Blackpool Teaching Hospitals Foundation Trust - the Vic, to locals - the new head of ophthalmology Ahmad Khalil, former medical retina lead and consultant ophthalmologist, predicts an additional 200 new patients a year passing through the system.
Like other specialist medics he is frustrated by the fact so many of us book eye tests in reaction to sensing something amiss - rather than as a norm, a routine, at least every two years.
Nothing wrong with your sight so why bother? It could be your loss, literally. Some conditions carry no warning other than what the optometrist can pick up. And by the time you realise something's wrong it could be too late to do something about it.
When this point was made in a recent blog on a social media platform one young Lancashire man expressed his anger - as someone who was born blind - that so many of us threw the chance of saving our sight away. He had no such choice. We do.
Yet Latest research from the RNIB shows that the numbers of people accessing free NHS sight tests has fallen across Lancashire.
“The first line of defence are high street opticians; nobody spots trouble coming like an optometrist,” says N-Vision's ECLO Linda Sethi, whose role is part funded by local CCGs.
“Your eyes mirror your general health. Tests can detect so much. For many they are free. For the rest it’s a small price to pay for peace of mind or earlier intervention.”
Linda found herself fast tracked to the very clinic she helps monitor for referrals earlier this year.
“I didn’t lose vision, but letters went haywire for me.” She booked an urgent appointment with her optometrist.
“Within the space of 48 hours I was in the system getting help. I had an MRI scan, echocardiogram, other tests - all stemming from a disturbance in my vision which led to my optician, and to her telling me to see my GP, to being called to the Vic that very afternoon.”
Linda is now on blood pressure tablets, and the visual disturbance has ceased.
“It was very frightening while the tests went on. I couldn’t drive for a whole month. I was scared, how would I cope, work, see my family?
“Some people leave here knowing that’s what the future holds. Not for a month but for life. There are so many implications including the fear of loss of independence.
“I’ll never forget how that felt.”
Linda regularly covers the fast track macular clinic, among others, at the Vic - reaching patients at a crucial stage.
“Patients are fast tracked for a reason, whether it’s wet macular degeneration, retinal detachment, a sudden drop in vision, a situation caused by high blood pressure, referred by an optometrist on the high street or a GP.
“I know because it happened to me.”
The RNIB and British Medical Journal have revealed 43 per cent of top NHS trusts don’t have a trained ECLO. Those that do support at least 600 patients and 200 family members annually.
Linda’s supported almost NINE HUNDRED patients in the last 11 months; bar the blip in her health which saw her off work for a month.
She doesn’t keep a note of partners, carers, friends and family helped over the last nine and a half years. “It goes with the job. People don’t know my role exists – or the charity – until they come to the clinics. They think they’re alone until they come to an N-Vision information day.
“Some are in denial, we’re fine, but most turn up in the end – even if it’s just for a free magnifier.
“We offer so much more - but that magnifier’s a start.”
She regularly sits in on Mr Khalil's clinics.
The little boy who decided to be an eye surgeon after his own father, a schoolteacher, lost his sight, and livelihood, at 42, is now the new head of ophthalmology at Blackpool Teaching Hospitals Foundation Trust.
Mr Ahmad Khalil has come a long way since that agonising wait for a specialist medic who tried in vain to save his father’s sight.
Ahmad’s own son is now in training to follow in his father’s footsteps and recently co-authored, with dad, a research paper on the psychological impact of age-related macular degeneration, presented in Berlin and Prague.
At heart, Mr Khalil is still that six year who saw the impact of sight loss on his own family.
“In truth, this speciality chose me,” he admits. “I am close to my patients. I shake hands with them. I hug them – if they need a hug. Many do. So many say ‘doctor, I’d rather die than lose my sight’; it’s important we prioritise them and support them.”
Surgically or psychologically, he helps restore their sense of perspective.
As a strategist he’s overseen changes to increase productivity and wants to curb waiting times – and anxiety levels – and champion new treatments and methods.
“I am focused on solutions. I don’t bring problems. don’t leave problems for others.”
He’s scaling down work he loved - as a tutor he oversaw four trainees - to accommodate his new workload.
“I must make changes to prioritise my time and respond to need. My clinics are full, I have meetings most lunchtimes, I work through a barrage of emails and I’ve been coming in earlier and leaving at 8pm.
“But I feel very good about the future.”
Britain’s most famous eye hospital, Moorfields, is considering Cloud-based referral platforms and other contact clinics remotely.
Mr Khalil has already handled virtual clinics. “I did one for six months - free. These were not for new patients - new patients should always be seen by the consultant - but for those familiar with the system, the more stable patients.
"You look at the images and decide which need treatment and which don’t. The consultant maintains oversight. You ‘see’ a much larger number faster. It takes out bottlenecks on clinics caused by, say, staff shortages or illness or holiday.
"Getting appointments is a process, so many are involved, and patients say they didn’t get the letter, or they forgot – and that has a psychological impact too.
“I now have responsibility for the whole department, eight sub specialities. I want to find better ways of working together. I am happy I can do it. We expect to have 200 new patients a year, probably more, so we need to be more targeted, address any bottlenecks, redirect patients, redirect staff and discharge more patients – but only when we can’t do anything more or they no longer have the problem.
"Rest assured, patients will always be at the heart of all we do.”
"When I heard Brian was going blind I cried. We were so active. We cycled for miles, played football, walked - he loved snooker. Behind every statistic there's someone like me."
Julie Pilgrim volunteer N-Vision
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