Transplant opt out for England

Feature - 05/10/2017

The Prime Minister’s Party Conference speech was splashed across the news for reasons Theresa May would rather forget but at Trust HQ, we were celebrating a major campaigning victory for people with cystic fibrosis – as Mrs May announced that the UK Government would be tackling the organ donor crisis head on. We asked Nick Medhurst, Head of Policy at the Trust, about the new opt-out legislation, and what it could mean for people with cystic fibrosis.

So, what’s new?

Well, following hot on the heels of similar announcements from Westminster opposition leaders, Jeremy Corbyn (Lab) and Sir Vince Cable (Lib Dem), the Conservative Party leader told the conference that the Westminster Government will propose to automatically enter everyone in England on the donor register, unless they decide to opt out.

The move comes after the Irish and Scottish Governments have made similar proposals and follows the Welsh Government pioneering the change in the UK, introducing ‘presumed consent’ or ‘soft opt-out’ in 2015.

It remains to be seen if the domino effect will see Northern Ireland switch to the system in the near future.

What effect can we expect the move to have?

We’ve learned from the Welsh example that the publicity campaign around the change in law has significantly boosted awareness of and positive attitudes towards organ donation and transplant.

As the law stands, you will be considered a potential donor unless you have declared that you don’t wish to be. Your next of kin or family will still be asked for consent on your behalf. Even with the new law, your family will be able to stop your organs being used if they’re unsure, so it’s always going to be important for everyone to keep talking about their wishes.

And it’s here that many donation processes stop in their tracks – families can be uncertain what the right choice would be and it is, understandably, a highly emotional time. Family refusal is, unfortunately, very high – and the consequence is that hundreds of people miss out on a transplant that may otherwise save their life.

So far in Wales, we haven’t seen evidence that the change to opt-out has directly boosted numbers of available organs but we must be patient and wait to see what the data shows in the next few years.

So with politicians across the parties and across the UK on board, is the battle won?

Unfortunately, far from it. The transplant waiting list is growing and it will take more than one change in the law to solve the organ shortage.

We can’t be complacent and think the problem has gone away – if we do, people will continue to die waiting.

However, with the issue now firmly in the political spotlight, it is the perfect opportunity to take on the broader challenge and work to make sure that everyone who needs a transplant gets one.

What else can be done to address the donor organ crisis?

Our Hope for More campaign – launched in 2014 – has already made lasting changes, including a move to a national lung allocation system to ensure that the most urgent lung transplant cases are prioritised wherever that person lives in the country.

However, we want to push further and ensure that the Government knows that the challenge goes beyond awareness and organ donation. We must campaign to ensure that:

Specialist transplant centres have the skills, technology, people and resources to boost the number of successful transplants they undertake.
Candidates for transplant have the best information, at the right time to help them make decisions they feel confident about regarding their transplants.
NHS Blood & Transplant continue to publish detailed data about organ donation and transplant to drive better performance.

What else is the Trust doing to help the organ transplant issue?

This year, we are working to better understand the transition process from specialist CF care to lung transplant and post-transplant care, so that we can help support services to push for the very best results.

Following the Prime Minister’s announcement, and with politicians’ ready to listen, we know that now is the time and we have renewed hope that, together, we can make the transplant system the very best it can be – until the day where we have beaten CF for good and no-one must face the agonising life-or-death wait.