Hundreds of people in the East have been able to have transplants during the first year of COVID
Health / Thu 15th Jul 2021 at 09:02am
A REPORT out today from NHS Blood and Transplant shows that despite the strains that Covid-19 put on the NHS over the last year, 389 people in the East of England had their lives saved by an organ transplant.
In total, 3,391 people in the UK had their lives saved thanks to 1,180 people donating their organs after death.
The Organ and Tissue Donation and Transplantation Annual Activity Report 2020/21 shows that despite the global Covid-19 pandemic, levels were sustained at 75% of normal deceased donation activity and around 80% of normal transplant activity across the UK, which is testament to the strong foundation of altruism from families, support for donation across the UK and the dedication of clinical teams.
The number of patients registered on the active waiting list for a transplant in the East fell to 260 at the end of March 2021, however, this does not fully reflect the number of people who need an organ transplant. Many patients were removed from the transplant list or transplant programmes closed during the peak of the pandemic as it was riskier to carry out transplants and NHS resources were under extra pressure.
John Forsythe, Medical Director of Organ and Tissue Donation and Transplantation, at NHS Blood and Transplant, says:
“This past year has been completely unprecedented in the history of the NHS, as well as in our wider society. So, the fact that 389 people in the East received an organ transplant is amazing.
“Each one of us in the wider clinical team of donation and transplant, across the UK, are immensely proud of the work to keep organ donation and transplants happening in the most challenging circumstances. But our commitment is nothing compared with donors and their families – the gift of life has been donated by 145 people in the East of England in the midst of a tragedy made even more difficult by Covid restrictions.
“However incredible this achievement, we mustn’t forget that there are still thousands of people in need of lifesaving organ transplants and we are doing our utmost to work with clinical teams and donor families to try and close the gap between those receiving a transplant and those still waiting.”
The number of families giving consent/authorisation for organ donation to go ahead has risen this year, from 68% to 69% overall for donation across the UK. This is particularly significant, as the pandemic and subsequent lockdown brought immense challenges for patients and their families. With many relatives often unable to visit or be with their loved ones in hospital, consent for organ donation was even more difficult for families as these sensitive conversations often had to be done virtually rather than face to face.
Edward (Ted) Dodd, aged 26, from Ely, was born with birth defects which meant he had only one kidney and an undiagnosed heart problem.
Despite many operations early on he had a happy and healthy childhood until he was 12 when his health started to deteriorate. It transpired his kidney and heart had failed simultaneously.
Ted became extremely unwell and his parents were given a bleak prognosis.
Medical teams managed his health with a view to undergo a kidney transplant operation once he was eventually strong enough.
In order to reach that goal, he was fitted with a mechanical heart valve which helped stabilise his condition. After a year, he was registered on the transplant waiting list and a couple of months later received his first kidney transplant.
Ted was well with his transplanted kidney; he travelled to various countries, completed a parachute jump and started training for a career in the Ambulance Service.
However, in 2019, after 12 years with the kidney, his health began to deteriorate and he was once again placed on the transplant waiting list.
Ted says “I started getting tired and was falling asleep a lot. It was difficult for me as the first time I became poorly I was a child – this time I was 25 and my adult life was being disrupted.
“I went on the waiting list in the summer of 2019 and later that year had to go onto dialysis which I struggled with. I felt as though my freedom had been taken away from me.
I had to contend with Christmas on dialysis…then Covid hit in the New Year. My partner, Archie and a few family members wanted to donate a kidney to me but Covid slowed the process.
“At dialysis, I’d started to get into a routine and always took someone with me – to play board games or just for the chat. Then due to the Covid rules I had to start going alone. It was horrible. I felt so dejected.
With Covid having such a big impact on the hospitals, I was convinced I wasn’t getting a transplant. It might have been months or even years before the pandemic settled, we just didn’t know how long.
I became massively ‘down in the dumps’.
I unpacked my hospital bag and switched off my phone at night because I was sure I wasn’t getting a call. I remember thinking ‘This is how it is now’.
“Then, one evening at dialysis, completely out of the blue, my phone rang. It was the transplant team. I panicked – I wasn’t ready physically or mentally, and I’d unpacked my bag!
“After overcoming some logistical challenges, including how to safely get to hospital in a pandemic, the transplant was ready to go ahead.
“It was completely surreal. The hospital was so quiet, the corridors were like a ghost town and all the staff were in top-to-toe PPE.
The staff were truly amazing. They made me feel safe and I was home after just a week in hospital.
“In the end I became nervous of the outside world having been made to feel so secure in the hospital. My mum and I spent weeks just focusing on my recovery while my dad, who works away, stayed away.
“I gradually started seeing more people and getting out. A couple of months after the op I walked 8 miles with my best friend. Before my transplant I struggled to climb the stairs at home without stopping for a breath. That was the immediate difference it made to my life.
“I feel the best I ever have. I had the trip of a lifetime driving around Scotland, have moved into my new home and am now back working on emergency ambulances.
“And it’s all because of my donor and their family. Because of a decision they made, in their worst time, I’m sat here, well, today. My life is no longer ruled by dialysis.
“I appreciate the small things. I really stop to notice them. I know it sounds corny but it’s true. Every single day I think about my donor and their family. Every time I get up in the morning, whatever I am doing, I am able to do it because of them.
“Organ Donation really is the most amazing gift. It has given me my life back… again.”
The pandemic brought immense challenges for patients and their families who were often unable to visit, even when their loved one was seriously unwell. And consent for organ donation was even more difficult for families during the pandemic as the sensitive conversations often had to be done virtually rather than face to face.
One family who made the brave decision to agree to donation during the height of the pandemic last year was that of 58-year-old Elaine Franklin from Bedfordshire.
Elaine was returning home from a local shop when she tragically collapsed outside the house she shared with her daughter, Kayleigh. A hospital CT scan revealed she had a bleed on the brain and a few days following surgery saw Kayleigh and Elaine’s younger brother, Lee, receive the worst news from doctors.
Elaine had often talked about organ and tissue donation with Kayleigh and, when invited to talk to the specialist nurses about organ donation, Kayleigh felt there was no decision to be made.
Elaine went on to donate her liver, kidneys, heart valves, tissue and bone saving three lives in July 2020.
Kayleigh, Elaine’s daughter, says “The question of donation was really simple for me because I knew exactly what my mum wanted. We often talked about organ and tissue donation and my mum had given blood most of her life and was also signed up to the bone marrow and platelet donor registers.
“There are so many decisions to be made on behalf of the deceased and if we haven’t talked about them, we will never know the answers, leaving us to constantly question if we have made the right ones. My mum took that burden away from me.
“Due to Covid restrictions, only myself and my mum’s younger brother Lee got the opportunity to visit and say our goodbyes but the specialist nurses at Addenbrookes were amazing. They spent hours with Lee and I, talking us through the entire procedure.
“I know how much of a difference mum’s gift will have been made to these three people’s lives and the people around them. It fills me with such enormous pride and joy to know that my wonderful mum has made such an amazing difference.”
The change in the law last May in England and in March 2021 in Scotland, means it will be assumed that people want to be a donor after death unless they register otherwise . Even though the law around organ donation has now changed, it is important to know that people still have a choice and families will still be consulted before organ donation goes ahead.
This new report shows the number of people opting to potentially be an organ donor after their death rose in 2020/21 and opt-in registrations on the NHS Organ Donor Register now stand at 26.7 million – with just 2 million opting out of deceased organ donation.
Unfortunately, Covid-19 also had an impact on living donation just as it did in most other countries. Living donor transplants fell to 32 in the East, this was due to the fact that we had to pause the UK Living Kidney Sharing Scheme for the safety of both the patient and the donor during the peak of the pandemic. This has now resumed, and every effort is being made to ensure that it continues to run smoothly.
John Forsythe continued: “We realise this has been a very worrying time for those patients who are waiting for a transplant and the families supporting those patients. We would like to reassure them that the recovery of organ donation and transplantation, both living and deceased, is well underway and deceased donation rates are back to pre-COVID levels thanks to the huge support of all those families who agree to donation and the clinical teams who work tirelessly to get the best outcome for patients.”
To view the Transplant Activity Report 2020/21 in full, please visit:https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/transplant-activity-report/