Wednesday 10 June 2015

'Hope For More': Transplants & The Power of Us - CF Week 2015

A common story shared by our community is that of transplantation. Still 1 in 3 people with cystic fibrosis on the transplant waiting list will die before they receive a lung transplant.

Since last year, following the publication of our 'Hope for More' report and subsequent campaign, the Trust has continued to lobby for change and improvements to transplantation in cystic fibrosis. Public Affairs Manager Darren O'Keefe has been leading on much of this work and today updates us on some of the developments and progress made since last Spring

It is always humbling to meet the people directly affected by the fight to improve transplant rates: people on the waiting list, desperately waiting for the call that might just be the difference between life and death; people who’ve been lucky enough to get the call, and of course the families and friends who’ve been there every step of the journey.

Last week I was in Scotland in a room full of these incredibly brave people as Anne McTaggart MSP (pictured) followed Northern Irish politician Jo-Anne Dobson and the Welsh parliament in introducing legislation to make soft opt-out organ donation a reality.

With 70% of the national population not registered as organ donors, this policy is a no-brainer. I hope the whole country follows the example set in Wales without delay and will continue to pressure Westminster.

However, these things inevitably take time and the Trust is doing everything we can to make sure that the organs already available are put to the best possible use. A year ago, in our ’Hope for More’ report, we exposed the tragedy that one in three people with cystic fibrosis waiting for a lung transplant dies before they can receive one, while 75% of donated lungs go unused.

Our campaign resulted in the Government admitting there was a huge problem and they have agreed to trial our proposed system of national allocation for donated lungs. This system is based on need rather than location and we believe it could greatly reduce these needless deaths. We understand that such a radical change must be tested and eagerly await the outcome of the trial.

So for now we shift our focus to other issues:

·   Why are so many donated lungs rejected by surgeons and patients? Are the criteria for what makes these lungs acceptable suitable?

·   Are people given enough information to make a truly informed choice as to whether to accept a pair of lungs that while not perfect, may be their only chance?

·   Do our hospitals and surgeons have all resources and skills needed to make the very best of what they have?

We have a host of MPs supporting our fight to have these questions answered. We will not let the government rest in campaigning for improved facilities and will soon get some of the finest surgeons together to explore the best transplant practices from around the world. We have partnered with NHS Blood & Transplant to establish surgeon and patients attitudes to risk.

‘Hope for More’ was so effective because of the stories shared by you, our community. We were able to show the real impact these issues have on real people, each and every day. Ultimately we will fight for as long as it takes because those brave people and their families deserve hope for much more. So keep those stories coming. And we will win this fight together.

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