Need for more organ donors, to help patients with diabetes

Mum and daughters, all affected by Type 1 diabetes, call on more people to join the NHS Organ Donor Register and share decision with friends and family.

14 November 2019

To mark World Diabetes Day (14th November) NHS Blood and Transplant is calling for more people to consider organ donation, in order to help more patients who are living with this condition.  

Last year, a total of 847 organ transplants were received by patients with diabetes. 313 (37%) of these went to patients with Type 1 diabetes and 251 (30%) to patients with Type 2. For the remainder, the type was unspecified. Of the 374 kidney transplants received by patients with diabetes, 296 came from a deceased donor and 78 came from a living donor.

As of 31st October 2019, approximately 1,000 people with diabetes are currently waiting for a transplant across the UK and of these, 82% (820) of these are waiting for a kidney, pancreas or islet transplant. The number waiting is up 14% from World Diabetes Day 2018, when the total stood at 876.

Sarah Jane Robinson, 47 from Bootle in Liverpool, received a kidney-pancreas transplant in July 2017 after waiting almost two years, as a result of her Type 1 diabetes. 

Sarah Jane began feeling unwell at the end of 2012 and in early 2013 it was discovered her kidney function was only 18%, and she was told she would need a transplant. 

Now, two years on from transplant, Sarah Jane is doing well and describes the transformation of her life since the operation as ‘miraculous.’ Before transplant she was on dialysis four times a day as well as reliant on insulin, and now thanks to her donor pancreas this is no longer needed, as her new pancreas now produces its own.   

Sarah Jane remains concerned that one day, her two grown up daughters, Kayleigh (26) and Aimee (24), might need a transplant as they both live with the same type of diabetes as their mum and she urges people to have the conversation about organ donation. 

Sarah Jane says: "I would ask everyone to join the NHS Organ Donor Register and make your decision known to family and friends. Organ donation is so important - you could just be living a normal life, getting on, minding your own business going to work, going on holidays, when suddenly you, or your child, or someone you love, could be told they are seriously ill and they need a transplant.

“There are not enough words on this earth to describe just how grateful I am to my beautiful precious donor and her family. Their selfless, compassionate and loving deed has not just saved my life, but it has given two young women their life and mum back too. 

“Think about what you would do in that situation. If you, or a close family member, needed a transplant and you would say yes to the offer of an organ, then you should be prepared to give them yourself.

“Please have the conversation with your loved ones and share your organ donation decision so your family know what you want and can support this if organ donation is a possibility.”

There is a particular need for more people from black and Asian backgrounds to donate. Over a third of patients waiting for a kidney transplant are from black, Asian and minority ethnic communities. Often the best match is most likely to come from a donor of the same ethnicity and sadly, many will die waiting due to a lack of suitable donors.

Gemma Gayle, 30, from Wandsworth, who is black British, was diagnosed with Type 1 diabetes aged 11. However, it wasn’t until her twenties that she started to experience problems that ultimately led to her urgently needing a kidney and pancreas transplant. 

Gemma says: “Dialysis made me weak and tired and it was super scary waiting for a transplant. Kidney problems tie you down and you feel horrible. It’s difficult doing anything day to day. Thanks to my donor and their family I am now really well.  Since my transplant I feel stronger and more energetic. I have got married, been able to go back to work and been on a long-awaited honeymoon to Japan and Korea. Life is great!” 

From spring 2020 in England and Autumn 2020 in Scotland, everyone will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate, what’s known as ‘opt out’, or are in one of the excluded groups. This system was introduced in Wales in December 2015 and in Jersey in July this year.

Families will still always be involved in organ donation, so it is vital that they know what your choice is. In the lead up to the change in law, NHS Blood and Transplant is urging families to talk and share their decision. If the time comes, families find the organ donation conversation much easier if they already know what their relative wanted.

John Forsythe, Associate Medical Director at NHS Blood and Transplant says: “Diabetes is a complex and potentially serious condition, which can sometimes lead to kidney failure, dialysis and the need for a kidney or pancreas transplant. Vital treatments such as dialysis or insulin injections, can still leave patients feeling incredibly restricted. By joining the NHS Organ Donor Register and telling your family your decision, you could give someone, or several people, the gift of life. Even after the law around organ donation changes next year, families will still be approached before donation goes ahead, so make sure they know your decision.”

It only takes two minutes to join the NHS Organ Donor Register. Register your decision and make sure you tell your friends and family.