According to data from NHS Blood and Transplant (NHSBT), more than 3,500 people had their sight restored thanks to corneal transplants in the year to November 2018. The success rate for operations is very good – on average 72% after five years rising to up to 90% for conditions like keratoconus. The donors and recipients do not have to be a match for successful surgery, and one donor’s corneas can improve the sight of up to 10 people.
Despite the overall positive picture, there is a shortage of donors. NHSBT figures from April showed there were 279 corneas in the eye banks, but the target is always to have around 350. This represented a 21% shortfall. One hundred corneas are issued for transplant each week and NHSBT aims for 10 eye donors per day.
Research undertaken by YouGov for eye research charity Fight for Sight has shed some light on some of the reasons for the lack of donors. The poll showed 44% of adults in the UK said the eyes were the body part they would least like to donate when selecting from a list of organs. Just 4% said the same for their heart and lungs and 2% for their kidney or liver. Issues over the personal nature of eyes (52%) and general squeamishness (33%) were the main reasons cited by those reluctant to donate.
Compounding the gloomy numbers was the statistic that only 42% would consent to donate the eyes of a loved one after they died.
As part of new organ donation laws being introduced in spring next year, all adults in England will be considered potential organ donors unless they choose to opt out or are in an excluded group. However, under Max and Keira’s Law, family members will be able to continue to refuse consent on behalf of their loved ones after their death.
Fight for Sight said the new laws were good for the overall organ donation pool, but it remained concerned that the research showed that donation of eyes could still be restricted, so increasing awareness and changing perceptions will be crucial.
Getting the message out
The research highlighted some results that offer hope. After they were informed of the significant shortfall of corneas available for transplant in the UK and the benefits of corneal donation in improving quality of life, 51% of those who initially said they would be least likely to donate their eyes went on to say they would be likely to donate.
Dr Neil Ebenezer, director of research, policy and innovation at Fight for Sight, said: ‘When people are made aware of the current deficit and the life changing potential of an eye donation, over half of them change their minds and say they would consider donating their eyes after their death. This highlights the importance of sharing the message and raising awareness.’
As the most common touchpoint for the public’s eye health, optometrists are in the best place to help share this message. ‘We would encourage optometrists to speak to their patients about organ donation,’ said a Fight for Sight spokesperson.
‘If people are getting their eyes tested it implies that they are taking care of their eyes and understand the importance of sight, which is a great time to discuss the gift of organ donation. Practices could even hand out informative leaflets which answer frequently asked questions so that an informed decision can be made as to whether to continue with the presumed consent in 2020 or if they would like to opt out.’
Daniel Hardiman-McCartney, clinical adviser to the College of Optometrists
Daniel Hardiman-McCartney, clinical adviser to the College of Optometrists said despite having no official role in organ donation, it was useful for optometrists to be mindful of the shortage of donor corneas because they were well placed to help educate patients on misconceptions and help them make an informed decision, should they raise the issue.
‘Common misconceptions can act as a barrier; such as believing that if you wear spectacles your cornea is not useful,’ said Hardiman-McCartney.
‘In the UK, organ donation is a personal decision and no pressure should be put on a person to donate. It is important to respect a person’s decision once it has been made.’
Bill Harvey, clinical advisor at Optician
Clinical editor Bill Harvey:
‘Most readers will be familiar with the “I don’t know how you work with eyes – they make me feel funny” type of comment. I have to confess to being amazed when I first heard this. Feet, ears, even teeth, maybe.
The eyes on the other hand are both biologically and aesthetically awe-inspiring. Recent reports of a shortage of corneas for transplant suggests too few people agree. Indeed, presumably due to often misplaced post-mortem squeamishness, many are happy to donate all organs other than the eyes after death. This is something eye care practitioners can help to change.
The cornea is an attractive organ for transplant. Its avascular nature and the advent of modern surgical procedures make post-transplant prognosis excellent. Sight loss due to corneal degenerations, dystrophies and trauma has a major impact on life, and sadly sometimes cannot be coped with at all. The offer of new sight has to be one of the greatest advances in medicine. But that’s not all.
Contact lens practitioners will know that the peripheral cornea is an excellent source of stem cells, so corneal donor buttons are integral to research pushing back boundaries in treating other causes of blindness including macular degeneration.
This news story offers an opportunity for ECPs to start a conversation. If everyone knew the real value of their corneas after death, I am confident they would make the right decision and leave a really positive legacy.’
Gill Fargher ensured her husband Tristan’s donation wishes were fulfilled
My donation story:
Gill Fargher is a GP of 30 years from Rochester. Her husband Tristan died unexpectedly from a cardiac arrest in 2015. Fargher knew that Tristan wished for his organs and tissues to be used after his death and was able to give consent for his them to be donated, including both of his corneas.
She said: ‘My husband Tris was so full of life, his death was completely unexpected and a huge shock. It really helped that Tris and I had discussed organ donation before and that I knew what he wanted. I would urge others to have the conversation with loved ones today about organ donation.
‘My life was shattered but I know that because of Tris, two people have had their sight restored and others have had their lives transformed too, and that is a source of great pride and comfort. Tris saved the lives of two people by donating his kidneys and has transformed the lives of 10 others by donating his corneas and tissues.’
Fargher now helps raise awareness of the importance of organ and tissue donation and chairs the organ donation committee at Medway NHS Foundation Trust.
She added: ‘Family consent is sought before organ and tissue donation can actually take place and families will refuse to give consent in 40% of potential donors if they are unaware of their loved one’s wishes. That is why it’s important to let your family know of your wishes, whether you are on the organ donation register or not. I am so grateful that Tris and I had talked about organ donation and I knew that in giving consent for organ and tissue donation, I was acting with his permission and his wishes.’