NHS Blood and Transplant reveals nearly 49,000 people in the UK have had to wait for a transplant in the last decade

Friday, 20 Nov 2015

New campaign launches with The Wait - a 14-hour film showing a day in the life of a patient waiting for an organ
Film to be screened free to public in its entirety at Vue Cinema Piccadilly on Friday 20th November

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, new statistics reveal.

The figures released today by NHS Blood and Transplant (20/11/15) coincide with the launch of a new organ donation campaign ‘The Wait’ to highlight the true scale of the donor organ shortage.

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.

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.”

Across the UK on 1st October 2015 there were 6,856 people on the waiting list for a transplant, including:

  • 5,400 people on the waiting list for a kidney and 481 of them had already waited longer than five years. An adult waits* 1,022 days and a child 316 days on average for a kidney transplant.
  • 267 people on a waiting list for a heart transplant and 46 of them had already been waiting 3 years.  An adult waits 1,033* days and a child 357 for a non-urgent heart transplant.
  • 349 people on the waiting list for a lung transplant.  The average wait for an adult is 233 days*.  Of the patients who waited for a lung transplant in the last 10 years, more than a quarter died while waiting.
  • 587 people on the waiting list for a liver transplant, 129 of whom had been waiting longer than a year.  An adult waits on average 137 days* and a child 74 days.

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.

NHS Blood and Transplant’s film ‘The Wait’ is being shown at Vue Piccadilly, London on Friday 20th November from 7.30am until 9.30pm. The public are invited to come along to watch some (or all) of Simon Howell’s day, captured on film. At 14 hours long, this promotional film to encourage more people to join the Organ Donor Register is an hour longer than the longest advertisement ever filmed**.

ENDS

For more information, additional statistics, to arrange an interview or to request a case study please contact:

NHS Blood and Transplant press office 01923 367 600 or email pressoffice@nhsbt.nhs.uk

For out of hours media enquiries please call 0117 969 2444

Organs@enginegroup.com / 020 3128 6339

How to support  #TimeToSign:

Notes for Editors:

  • * Figures on 1st October 2015.  6,856 patients on the active waiting list for a transplant. 3,194 have waited less than a year, 1,584 between 1 and 2 years, 905 between 2 and 3 years, 454 between 3 and 4 years, 208 between 4 and 5 years, 139 between 5 and 6 years, 91 between 6 and 7 years, 281 more than 7 years
  • ** The average waiting times for organs are published annually in the Organ Donation and Transplantation Activity Report. https://www.organdonation.nhs.uk/supporting-my-decision/statistics-about-organ-donation/transplant-activity-report/ Figures in this release cover the average waiting times for those registered on the list for a kidney transplant between 1 April 2008 and 31 March 2012 and those registered on the list for a liver, heart and lung transplant between 1 April 2010 and 31 March 2013. There is an Urgent Heart Scheme and Super Urgent Liver List for patients in desperately urgent clinical need for a transplant.
  • *** The previous longest promotional film was 13 hours and 5 minutes for a restaurant chain in America in 2014
  • ‘The Wait’ film was shot on Wednesday  4 November using 6 cameras shooting continuously for 14 hours in Simon Howell’s family home in Burgess Hill, Sussex
  • NHS Blood and Transplant (NHSBT) is a joint England and Wales Special Health Authority. Its remit includes the provision of a reliable, efficient supply of blood and associated services to the NHS in England and North Wales. It is also the organ donor organisation for the whole of the UK and is responsible for matching and allocating donated organs.
  • 21.8 million people in the UK have already signed onto the NHS Organ Donor Register.  These people have joined the Register to record their decision to donate organs and/or tissue after their death for transplantation. This information is used by authorised medical staff to establish whether a person wanted to donate. A newly build ODR has just been launched in the UK. This also gives registrants the option to register a decision not to donate their organs or to nominate others to make the decision for them after their death.
  • Anyone can register on the ODR. Age isn’t a barrier to being an organ or tissue donor and neither are most medical conditions. People in their 70s and 80s have become donors and saved many lives.
  • One donor can save or transform up to 9 lives and many more can be helped through the donation of tissues.