In Norfolk 55 people are on the UK’s waiting list for a transplant and 12 have been waiting longer than two years, three longer than five.
The new statistics released by NHS Blood and Transplant coincide with the launch of a new organ donation campaign ‘The Wait’ to highlight the true scale of the donor organ shortage.
The numbers waiting in Norfolk show only a small part of the UK picture. Of the almost 7,000 patients currently on the UK’s transplant waiting list, 30% have been waiting more than two years. More than 500 of them have been waiting longer than five years – that’s over 1,800 days each.
Almost 49,000 people in the UK have endured the wait for an organ transplant in the last 10 years and over 6,000, including 270 children, have died before receiving the transplant they desperately needed. 19 people living in Norfolk have died between April 2011 and November 2015 because of the shortage of organs.
The campaign launches with the screening of a 14 hour film capturing a day in the life of patient Simon Howell, 41, his wife Anita, also 41, and their children Sarah, 8, and James, 3.
Born with a serious kidney condition, renal dysplasia, Simon had his first kidney transplant in 2005 thanks to his mum offering to be a living donor. Unfortunately, in 2009, the kidney failed. Simon was added to the transplant waiting list for a new kidney and has been waiting longer than six years already.
Simon allowed cameras to record the reality of just one of the many days he has spent waiting for a suitable organ to highlight just how difficult life is on the transplant waiting list.
Simon’s day is dominated by his illness. His day is punctuated with four life-saving sessions of dialysis, indescribable fatigue and constant uncertainty for the future as he and his family live in hope that a suitable donor organ will become available.
Talking about the impact of being on dialysis and waiting for a transplant, Simon said:
“I’ve been on dialysis for five years. For me, it’s the most difficult part of the wait. Dialysis keeps me alive whilst I wait for a transplant; but that’s all it does. I’m in limbo.
“My family and I are on a roller coaster and like a roller coaster, I can’t see the twists and turns or how it will end. But a transplant would completely transform my health and all our lives.
“Waiting for a transplant is not like waiting for anything else. You don’t necessarily get nearer to the top of the list the longer you’ve been on it. It depends on many factors including who is in greatest need and who is the best match for an organ. It’s an endless wait with no ETA.”
Sally Johnson, NHS Blood and Transplant Director of Organ Donation and Transplantation said: “Simon’s journey has already been a long and difficult one and while we are doing everything we can to make sure he gets the transplant he needs, the NHS cannot do this without help from other people.
“Sadly though, Simon is not alone. Statistically, more than one in ten people on the waiting list will die before they get the transplant they need. For some organs, the picture is significantly bleaker. More than one in four people waiting for lungs will die.
“I’d ask you to imagine how you’d feel if someone close to you was waiting for a transplant; their whole life on hold, hoping someone will donate to save them. I’m sure we’d all hope an organ would be available to help someone we love - so shouldn’t we all pledge to be organ donors so more lives can be saved?
“If you haven’t told those closest to you that you want to be an organ donor, then please do it today. Tell them you want to be an organ donor and record your decision on the NHS Organ Donor Register.”
To join the NHS Organ Donor Register please go to organdonation.nhs.uk or call 0300 123 23 23 – Now is the #TimeToSign.
Watch the film (and share it) at organdonation.nhs.uk