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Have your say on organ donation in England and Northern Ireland

12 December 2017

Families in England and Northern Ireland are being encouraged to talk about organ donation with relatives, as two public consultations on plans to change the approach in both countries are launched.

Health Secretary, Jeremy Hunt, has called on people to overcome a "fatal reluctance" to talk about organ donation with relatives.

Figures from NHS Blood and Transplant show in the past year around 1,100 families in the UK decided not to allow organ donation after a family member’s death because they were unsure, or did not know whether their relatives would have wanted to donate an organ or not. If an individual has not signed up to the organ donor register or discussed organ donation, their family are more likely to object.

Five people die each week waiting for a new kidney.

In October, the Prime Minister announced the Government will consult on a move to an 'opt-out' system in England, shifting the balance of presumption in favour of organ donation, in a bid to save the lives of the 6,500 people currently waiting for a transplant.

Meanwhile, in Northern Ireland, where last year a bill to move to an opt-out system failed, a new draft policy is proposed to improve the ways organisations go about raising awareness and to improve training for healthcare professionals.

Peter Storey, Director of Communications at Kidney Research UK, said: “Our position is a balanced one. We see presumed consent as one of a number of things that could increase the availability of organs for transplant and thereby reduce the waiting list. It is not a solution on its own, and needs to be combined with improvements in the resources the NHS has to manage organ donation and, crucially, more funds for research into transplantation so that we can make kidneys work better and last longer.”

He added: “Irrespective of whether we have an opt-in or opt-out system, it is vital that people discuss their wishes with their families, so that if they decide to donate their organs, their wishes can be fulfilled. We welcome these two consultations and would encourage people to participate in order for their voices to be heard.”

With the launch of the consultation today, Mr Hunt is starting an open conversation about opt-out organ donation in England. Over the next three months, the Government is asking for comments on the defining issues of the new system:

How much say should families have in their deceased relative's decision to donate their organs? When would exemptions to 'opt-out' be needed, and what safeguards will be necessary? How might a new system affect certain groups depending on age, disability, race or faith?

Only about half of adults on the current organ register say they have discussed their wishes with a relative, with people from minority ethnic groups among the least likely to have had an open conversation This is significant as only about six percent of deceased donors are Black or Asian, meaning Black or Asian patients are waiting six months longer for a suitable kidney transplant than white patients.

Northern Ireland residents are being encouraged to comment on government proposals to increase awareness of organ donation through ring fenced funding for a communications programme, engaging with all sectors of the community, as well as providing training for healthcare professionals. The new policy aims to increase family consent rates to 80%.

Sarah Harwood had kidney failure at the age of 18 after developing a rare disease called Goodpastures Syndrome. She was especially unlucky having a terrible time on dialysis, being violently ill with migraines and sickness after each session, and was in and out of hospital with various problems. After several months on the waiting list for a transplant, she eventually received a kidney from a child who had been on life support. She said: “Her family made the amazing decision to donate her organs and I don’t know how many people she saved because of that. To say that I am grateful every day for that decision is not sentimental or an overstatement, it is simply a fact. That little girl and her family saved my life when I was ready to give up.

“From my point of view anything to help increase the number of organ donations and improve the viability of those organs is a positive step. There is a lot of work to do to help all the patients out there waiting for a lifesaving call.”

The consultation for England will run for twelve weeks concluding on 6 March 2018, after which a Government response will be published.

The consultation for Northern Ireland runs until 5 March 2018.

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