We didn’t just dare to ‘Hope for More’, we made it happen – together. Following the Cystic Fibrosis Trust’s campaign for a fairer donor organ allocation system, sharing the voices of over 10,000 people in the cystic fibrosis (CF) community, organs will now be given to those in greatest need first.
On 6 June 2017, NHS Blood & Transplant announced it will move from the current regional allocation of donor organs to a fairer national system for the most urgent cases.
What the national lung allocation system means
The new system was one of the 12 key recommendations made by the Cystic Fibrosis Trust as part of the Hope for More campaign, as it allocates donor organs to recipients on the transplant list based on who needs it the most, rather than the current system of who is closest to the hospital the organ is received at.
There are three tiers of allocation for donor organs: non-urgent, urgent and super-urgent. The new, national system will be used for those on the super-urgent and urgent tiers. For patients in the non-urgent tier, lungs will still be allocated on a regional basis.
How we campaigned to make it happen
Our ‘Hope for more’ report bought together over 140 CF and transplant healthcare professionals as well as people with the condition, both pre- and post-transplant. It set out 12 recommendations, including a national allocation system, to improve the prospects of people with cystic fibrosis.
The old system was unfair because the donor organ would be allocated to the closest hospital rather than the individual at the top of the list, so someone in the one region of the country who badly needed a transplant might miss out on the next available lungs, as they could be allocated to someone with less need in another region, which is inherently unfair but does not discriminate against any particular area of the country in particular.
Looking to the future
Charles Michael Duke, a 22-year-old with cystic fibrosis, said: “I am so happy that this new system is in place. I might be one of the lucky ones to benefit from this, rather than missing out to someone who is in better health just because they happen to live closer to the hospital that receives the next available lungs.
"A transplant would allow me to do more of the things I love and give me and my family hope for the future that just won’t come from anywhere else.”
This is a huge success for the CF community, and while there is still a lot of progress to be made before we can say that everyone who needs a transplant will get one, it is a time to celebrate the difference that we as a community have made. Over 10,000 took our call-to-action and wrote to their MPs and our former Chief Executive, Ed Owen, gave evidence to a Parliamentary select committee.
David Ramsden, Chief Executive of the Trust, said: “We hope this change will make a real difference for people with cystic fibrosis. Currently, one in three people living with the condition and in need of a double-lung transplant will die on the waiting list. We continue to urge people who sign up to the donor register to tell loved ones their wishes.”