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Cystic Fibrosis Trust

Hope for more: Campaigning for a national lung allocation system

One in three people with cystic fibrosis on the waiting list for a lung transplant will die before they can receive one. 

In 2014 we published a report containing 12 recommendations for increasing the number of successful transplants for people with cystic fibrosis, and improving the quality of care they receive throughout.

One of the key themes to emerge from the report was the need for a fair national system for the allocation of donor lungs.

Hope for More campaign update: 6 June 2017

Following our campaign for a fairer donor organ allocation system, 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.

How does the current system work?

Currently, donor organs are allocated to the closest hospital rather than the individual at the top of the list, so someone in one region of the country who badly needs a transplant might miss out on the next available lungs, as they could be allocated to someone with less need in another region. This system is inherently unfair but does not discriminate against any particular area of the country or against people with cystic fibrosis.

How will the new system work?

The new system will allocate donor organs to recipients on the transplant list based on who needs them the most, rather than allocating them to the individual who is closest to the hospital the organ is received at.

There are three tiers of allocation for donor organs:

  • Non-urgent
  • Urgent
  • Super-urgent

The new 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.

These 12 actions include:

  • Introducing a national lung allocation system.
  • Increasing the pool of available donor lungs by recognising extended criteria organs.
  • Giving patients the information needed to make informed decisions about accepting such organs.
  • Delivering a model of care that empowers the patient population.

Read the report in full.

What are our next steps?

We will continue to raise awareness of issues around transplantation and encourage families to have conversations about being an organ donor.

The UK continues to have one of the highest rates of family refusal to organ donation in the Western world, meaning that many families continue to refuse that a loved one's organs are donated even if their loved one has signed up to the organ donor register. We are encouraging people to talk to their loved ones about organ donation so that their wishes can be known.

We are also committed to giving people with CF the information they need to make informed decisions throughout the transplant process to achieve the best outcome that they can.

Watch Ashley's moving story below, explaining the importance of organ donation, and see why we are fighting to ensure that everyone who needs a transplant can have one.

Further information

We have a factsheet 'Lung transplantation in cystic fibrosis' to help people with cystic fibrosis and their families who are seriously considering lung transplantation.

Research

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

Discover more

What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

Read on

More information

If you would like to find out more about any of our campaigns, publications or anything else, get in touch and we'll be happy to help.

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