Giving the Gift of Sight
The start of September saw lots of news and discussion about the importance of organ donors during Organ Donation Week. At North London Hospice we have seen a sizeable increase in corneal donation thanks to a partnership over the last year with Moorfields Eye Hospital NHS Foundation Trust.
Staff received a training and education session on corneal donation and began to speak to patients and asked them if they were registered organ donors. Many patients were unaware they can donate their corneas, even if they are undergoing cancer treatment or are otherwise unwell. This led to a rapid rise in corneal donations from hospice patients. So far this year 17 donations have been made – compared to just one in the previous five years.
Moorfields have confirmed that so far this has resulted in eight men between the ages of 20-87 and four women aged 64-80 having their sight saved. But each donation can benefit the sight of up to 10 people.
Rory Carrigan, North London Hospice’s Palliative Medicine Registrar and Corneal Donation Champion explained: Within the UK, there is currently a transplant shortage of approximately 500 corneas each year. Since corneal transplant is a sight-saving procedure, corneal donation (CD) can be empowering for end-of-life patients who are otherwise unable to donate their organs. As an organisation the North London Hospice felt more could be done to promote CD, taking the wishes of our patients further. By asking and exploring their wishes, it has been clear that many patients wished to donate their corneas. Whilst this is a sensitive topic, discussion has been received positively even if ultimately this was not something a patient wished to pursue.
“To continue the good work, we plan to identify CD champions across our services with regular awareness days such as ‘Organ Donation Week’. With any organisational change, there needs to be a ‘cultural shift’ in practice and I’m delighted to say we are now seeing this at NLH as we continue to see the positive impact that CD has on our patients and their relatives.
Facts and figures are important but what does corneal donation mean to real people in their every day lives? Here we meet the family of a donor and a mother whose sight has been restored thanks to corneal donation.
Filomena Komodromou’s family have benefitted from and contributed to organ donation. Fifteen years ago a heart transplant saved her brother’s life and in the summer this year their father passed away at North London Hospice and he chose to donate his corneas.
Filomena explains the family’s passionate advocacy of organ donation and how her father Pasquale Scannella’s donation has really helped with their grieving process.
My brother Mario had a heart condition when he was 34, which developed into heart failure and the only option was to have a heart transplant. As a family it changed our whole outlook on organ donation. I had always been in favour of organ donation but for my parents, who are Italian and from a different generation, it wasn’t something they were really comfortable with. At the time my brother was ill, he had a three-month old son and had no quality of life. Now he’s married, went on to have two other sons and has been able to watch them grow up, enjoy his family and his life. This June my father passed away at North London Hospice in the inpatient unit. He had been suffering from lung cancer for over a year. He decided to donate his corneas to Moorfields eye hospital, something that was arranged by the Hospice.
My father would have donated all of his organs if he could, but because he had cancer he could only donate his corneas. There was no hesitation in his decision. I guess it was his way of giving back especially after my brother’s experience. Someone died in order for my brother to live, so although corneal donation doesn’t save lives, it’s giving the gift of sight. My father was told his corneas could help up to 10 people.
The conversation about organ donation was handled very sensitively. His community nurse and Rory from the Hospice visited my father one day at home. My mum, myself and my cousin were also present. It meant that my father had the chance to fully understand the implications of corneal donation and that we were there as a family to hear his wishes.
It’s a truly wonderful thing and it really helps with the grieving process. I miss my father terribly and not a day goes by when I’m not thinking of him. Knowing that part of him is still living and helping others see is very humbling and comforting. I would urge everyone, whether they are sick or well to discuss organ donation with their family and loved ones. So many people die in this country on the organ waiting list. To be able to give the gift of life or sight to others is a truly amazing thing.
Mum-of-two Alison Castleton from Horsham, West Sussex was a normal 24-year-old with a great career as a lingerie designer for Marks & Spencer when she was suddenly struck with the eye condition Fuch’s while driving one day. Now more than 40 years later she has undergone three corneal transplants which have enabled her to live a full life and watch her two children and four grandchildren grow up.
I was driving along and found I couldn’t see. A mist clouded my vision and made everything blurred. Just like that. And in that moment my life changed. By chance my neighbour was an optician who worked for Moorfields Eye Hospital and I was diagnosed with Fuch’s.
From that first day I would wake up in a fog and gradually as the day went on the mist would clear and by evening I could see. Then it would be back to square one the following morning. It was devastating. I had to give up my career, as sewing was out of the question.
I had two children and when my son was six I had my first graft. I’ve had three grafts in total and they’ve totally transformed my life. I can drive, I can read, I look after my four granddaughters without any problem. I feel so lucky to be living in England where I’ve been able to have the corneal grafts.
If you are thinking about donation, please don’t hesitate. It really can transform not just one but many lives. I would love to have known who my donors were so I could thank their families and show them what a difference their loved one’s kindness has made. I shudder to think what my life would have been like without the donations. I’d have missed so much. My father also had the same condition and he too was fortunate to have the corneal grafts. I worry that my sons and granddaughters may inherit the condition and hope that the importance of corneal donation and its life changing effects inspire people to continue to donate so that they, and many others, may benefit in the future.