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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.

Currently, lungs retrieved from a donor that are suitable for transplant are allocated to the closest transplant centre geographically. We believe that a national system of allocation should be implemented, so that donor lungs are allocated purely according to an individual’s need, and where an individual lives in the UK has no impact on the likelihood of receiving a lung transplant.

On 10 March we launched Hope for more: Campaigning for a national lung allocation system', asking our supporters to email their local MP/MSP/AM/MLA and ask them to raise the critical need for a fair national lung allocation system with the Secretary of State for Health, Jeremy Hunt MP.

Hope for more campaign update: 27 May 2014

Hope for more: Improving access to lung transplantation and care for people with cystic fibrosis
The report is the culmination of a consultation process launched by the Trust in June 2013, at a Parliamentary reception hosted by Jason McCartney, Member of Parliament for Colne Valley.

Over 140 professionals from across the spectrum of cystic fibrosis and transplant care, took part in the consultation alongside people with cystic fibrosis, both pre- and post- transplant, making it the largest consultation of its type in the UK.

'Hope for more' also asks policymakers and health professionals to take 12 actions, including:

  • 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.

We also 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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