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18 March 2024

Celebrating the past and anticipating the future: 50 years of glaucoma support

Two images side by side: (left) A black and white poster from the 1970s showing a residential road with blur around the edges (text reads: Glaucoma - do you have your eyes examined regularly?). (Right) A close up of a smart phone showing a video of a man with a caption saying "Early detection is crucial).

This article was written by Joanne Creighton, Glaucoma UK Chief Executive, for Insight Magazine.

Being at the helm of Glaucoma UK during our 50th Anniversary year is an enormous privilege. This very special occasion offers a welcome opportunity to reflect on the achievements of the last half century and the many ways in which the charity has made a difference to people living with glaucoma.

Preparing this article has been extremely enjoyable and I feel lucky that the anniversary happened to land ‘on my watch’. However, as a relative newcomer, I am keenly aware that the achievements I describe are the hard work of many others who have given far more and served far longer.

As the current custodians of Glaucoma UK, myself and our excellent team of staff, trustees and volunteers benefit every day from five decades of hard work and commitment from scores of individuals who have worked, volunteered and supported the charity throughout that time. It is very tempting to name people when celebrating that effort, but I have resisted the temptation to do so on this occasion. With 50 years to draw upon, there is always the danger that a key contribution might be accidentally overlooked. Instead, I am writing this article with grateful thanks and affection for every person who has been part of our shared story.

I am mindful that the story doesn’t end here, though. We now have a duty to look forwards and ensure that Glaucoma UK achieves even greater success in the next 50 years. Against a backdrop of growing NHS pressures and rising demand for ophthalmology services, the work of our charity has never been more important. So, in seeking inspiration for our future plans, where better to start than with the passion and insight that first brought our charity to life?

Origins and vision

Ronald Pitts Crick, Founder of Glaucoma UK
Ronald Pitts Crick, Founder of Glaucoma UK

The memory of our founder, ophthalmologist Ronald Pitts Crick (one name I must mention, of course), will loom large over our celebrations this year. Pitts Crick, who died in 2009, devoted much of his professional life to the study and treatment of glaucoma, although he is perhaps best known for pioneering the use of the operating microscope in British eye surgery.
That pioneering spirit was certainly in evidence when he founded our charity. Pitts Crick was aware, from his Monday night glaucoma clinic at King’s College Hospital, London, that a lack of patient understanding was often a barrier to effective treatment. Recognising that it would be impossible to fully address education and awareness during the limited time available for appointments (still a challenge today, of course), Pitts Crick sought another way.

Over a cup of tea at an informal meeting with colleagues and patients, Pitts Crick put forward his proposal for a new charity to fill the gap. He described his vision for increasing professional, public and patient understanding of the disease, and for funding research. He set out an ambitious plan for giving patients the time, space and information they needed, when and how they needed it. That prospect was warmly welcomed by all present and thus the ‘Glaucoma Association’ was born.

The beginnings were humble, with the new association operating out of a bedroom on the fourth floor of the nurses’ quarters at the hospital. Leaflets were stored in the bath, the bed served as an ‘open-plan’ filing system and the bedside table had to double-up as a desk. Portable typewriters had to be brought from home and efforts to grow a thriving membership organisation were undertaken without the benefit of a phone and only shoe boxes in which to store the increasing volume of record cards. It must be said, though, that there is nothing bleak about the wonderful accounts that still exist from those who worked through those times. In fact, they are full of examples of determination, tenacity, commitment and good humour that really lift the spirit. Highlights include tales of pulling out drawers from the filing cabinets to sit on when there were too many people working in the office and of having to sequester ‘unwanted’ furniture left around the hospital (the refurbishment of the private consultants’ offices led to a particularly bumper haul, it would seem). It is also a delight to read about the early fundraising efforts and the need to cut up and stitch branded tea towels to sell, as it was cheaper to buy miles of fabric in single strips than the individual items themselves. Those folks might say we don’t know we’re born now – and it would be hard to argue, to be fair.

Ronald Pitts Crick smiles while watching an eye examination being carried out.

Undeterred by the lack of resource, the charity’s early pioneers soon created a thriving operation and before long the name was changed to the ‘International Glaucoma Association’ (IGA), reflecting the international contacts of the King’s eye department. Keen to create a clear visual identity for the charity, Ronald Pitts Crick thought back to a green frog that was a firm favourite from his children’s childhood. Both a logo and a strapline all in one – For the Relief Of Glaucoma – the frog emblem served the charity well for many years (although some recall that the imagery didn’t translate quite so well when undertaking activity in Europe…).

We owe much to Ronald Pitts Crick and his team of dedicated early supporters who worked so hard to bring his vision to life. That vision remains our lodestar to this day.

Glaucoma UK in 2024

Inevitably, the five intervening decades have seen ongoing evolution and growth. Our operating name was updated to Glaucoma UK a few years ago (although International Glaucoma Association continues to be the name of our legal entity). This change helped to highlight our uniqueness and more accurately reflect the nature of our day-to-day work. While there are a number of organisations working to fight the condition across the world, we are the only charitable organisation dedicated solely to glaucoma support in the UK. We remain keen to nurture our international links, though. We are mindful that, in our multicultural society, many people affected by glaucoma have loved ones not based in the UK. Furthermore, our research findings are changing glaucoma practice and it is vital that the outcomes are shared with an international audience.

Another key development of recent years is the formalisation of our long-standing association with the UK and Eire Glaucoma Society (UKEGS), which officially became part of the charity in 2019. UKEGS was established as a scientific society to promote and foster the interests of people living with glaucoma and to stimulate research by promoting the exchange of knowledge between glaucoma care professionals.

A speaker giving a presentation at the UKEGS Conference.

Our partnership with UKEGS underscores the essential connection between clinical and pastoral care. To achieve the best possible outcomes for people living with glaucoma, we need to continue to address the problem Ronald Pitts Crick identified so long ago: how to meet the medical, educational and pastoral needs of patients within the resource constraints of the hospital system.

In attempting to tackle this challenge, we see ourselves as ‘pastoral partners’, helping to provide continuity of support after patients leave the clinic. It’s a concept we hope our founder may have quite liked.

Raising awareness and providing support

With an estimated 700,000 people in the UK living with glaucoma (but only half of them aware of it), increasing awareness of both the disease and the risk to individuals is a vital aspect of our work. We run campaigns throughout the year to highlight the importance of regular eye health checks for those who do not know they may have glaucoma – and signposting the services we provide for those who do.

A poster advertising the Glaucoma UK helpline.

For many, our helpline is the first port of call and the fascinating article on page 65 (see the Winter 2024 edition of Insight magazine) reflects on what has changed and – even more interestingly – what has stayed the same about this vital aspect of our provision over the last 50 years.

Our support groups across the UK continue to bring patients and professionals together in just the way our founder envisaged. Perhaps the biggest change from those early days is that we can now deliver those groups digitally, too, allowing us to reach even more people, who can choose to view the topics of greatest interest at the times most convenient to them.

For those seeking help and advice online, our website is a place where individuals have a vast array of information at their fingertips and can order booklets and leaflets on every aspect of glaucoma care – All a far cry from the days of photocopying and mailing out hand-typed sheets. What remains consistent, though, is that all our services and resources are provided free of charge, thanks to the enormous generosity of our wonderful donors and supporters.

Funding research

Much has been achieved in the field of research in the last 50 years, but we still need to understand much more about what causes glaucoma, how it can be prevented, what are the most effective treatments and – ultimately – how it can be cured. Through our annual research programme, we support studies that seek answers to those questions by testing new medical and surgical models and exploring new ways of working.

Our support for the Chair of Glaucoma and Allied Studies at University College London (a post originally held by the hugely influential Professor Roger Hitchings) continues to be a core aspect of our work. This was something especially close to our founder’s heart and so it is heartening in this anniversary year to see the post thriving, with the current incumbent, Professor David (Ted) Garway-Heath, having been named in the Ophthalmologist magazine’s ‘Hall of Fame’ in 2023. In the charity’s early days, Pitts Crick inspired the team to fundraise for a Chair of Glaucoma Studies, by describing the discipline of glaucoma as a ‘Cinderella subject’ and urging team members to help ‘Cinders go to the ball’. The £1,000,000 fundraising target was helped on its way with a legacy of £300,000 and thus the ‘Chair Fund’ was established. Letters were sent to the charity’s members, explaining the project and asking for help. The talented and tenacious campaign leader worked out that 4p a day for five years from every member would raise the necessary funds and her appeal soon resulted in the money rolling in. Indeed, there are heart-breaking stories of individuals sending in their five years’ worth of contributions in one go because ‘they might not live that long’. So, with such dedication to get the concept off the ground, we are mindful of the duty we now have to ensure that the work of the Chair remains a key weapon in our fight against preventable sight loss from glaucoma.

Two researchers carrying out work in a laboratory.

To further reinforce our efforts in this area, it is exciting to be making plans for a new Research Fellowship Award to encourage the finest young clinicians to adopt glaucoma as their specialism and help transform glaucoma care in the next 50 years. We didn’t need to think too hard about what to call the new scheme, of course, and we look forward to celebrating the successes of the ‘Pitts Crick Fellowship’ in due course.

Looking to the future

As we embark upon the next 50 years of our journey, we have a particular focus on increased awareness and earlier diagnosis among those who are most at risk. We know that certain groups – including some ethnic minorities and the socially deprived – have a higher likelihood of losing sight from glaucoma. We also know that they are often underserved by our current health services. Our priority is to better understand the barriers they face in accessing care in order to improve the assistance they receive.

We are determined that more people live well and maintain sight through equitable and timely access to an effective combination of clinical care and pastoral support. You, our members, are an invaluable source of insight and intelligence about what it is really like to live with the disease. You know first-hand how difficult it can be to navigate the current system, one which is highly inconsistent across the UK. As the eye-care sector grapples with the existing challenges and looks for new models of care, it is vital that we represent your voice. The growing momentum for a new national eye health strategy is a real opportunity – we must ensure that it delivers for people living with glaucoma and those who care for them.

I won’t be here, of course, but I do hope Glaucoma UK isn’t celebrating its centenary in 50 years’ time. I hope that – as a result of our continued commitment to funding high quality research – we have found that elusive cure and the need for the charity no longer exists. Now that would be cause for a party, wouldn’t it?

You can learn about what we’re doing to commemorate our 50th anniversary here.