Hello, my name is Mahmud Nawaz.
I wear a number of different hats across West Yorkshire, including being a Non-Executive Director at Mid Yorkshire Teaching NHS Trust, a member of the Organ Donation Committee for both Mid Yorkshire and Leeds Teaching Hospitals NHS Trusts, a Yorkshire Organ Donation Ambassador for NHS Blood and Transplant and Chair of Relate Bradford and Leeds.
This week is Organ Donation Week nationally, and I wanted to share a few words about why this is so important. In March 2004, my wife Sharon died suddenly of a brain haemorrhage. She was 32 years old. She was rushed to Bradford Royal Infirmary, where, after they had tried to save her and there was nothing more that could be done, I was asked if she had considered organ donation. Now Sharon had carried an organ donor card since the age of 16, and importantly had had the conversation with me so I knew what she wanted. Because of that, I knew to say yes – she had protected me from having to make a really big decision at the worst possible time, and without that conversation I probably would have said no.
Because she had prepared me so that I would say yes, she went on to save four lives through donating her kidneys and her liver (which gets split into two for organ donation for an adult and a child). One of those saved was a boy of one and a half, who wouldn’t have made it to two without Sharon’s donation. I am immensely proud of her for this legacy.
You may have heard that in May 2020 the law on organ donation in England changed to what is known as an ‘opt out’ system. However, in all cases, your family is consulted to see if they support your decision. This basically means that for those who haven’t made an organ donation decision on the organ donor register (either a yes or a no) – in other words the ‘no decision made’ category – the conversation with your family will be about you not opting out, so asking whether you had given any further verbal decision to them or whether there is any reason not to proceed with organ donation. Importantly, no donation happens without family consent. That is why it is vital to tell your family – prepare them for the question and know what their decision would be too, and as I said earlier, protect them from having to make a tough decision at the worst possible time. And please record that decision on the organ donor register – either on www.organdonation.nhs.uk or via the NHS App (under the “Your Health” tab). Where families have had the conversation, consent rates are above 90%, but drop to just 60% where no conversation has happened.
Across West Yorkshire, just 36% of us have recorded a decision on the Organ Donor Register (ODR) – much less than the 41% UK average. We as health leaders in West Yorkshire have work to do to encourage everyone to consider their decision, record it on the ODR and importantly, tell their family that decision.
Tackling health inequalities is a big priority across the West Yorkshire ICS, and in organ donation we see big inequalities too. Ethnic minority patients make up one third of the transplant list (so are more than twice as likely to need a transplant) but consent rates are much lower (half as likely to donate an organ through deceased donation). This means that the wait for an organ transplant is much longer for ethnic minority patients, increasing the risk of death or a worsening quality of life even with the transplant. It is vital we engage all our communities and talk about organ donation. All major religions support the principles of organ donation, and a lot of great guidance and information is available for ethnicity and religion at www.organdonation.nhs.uk
Across West Yorkshire and indeed nationally, you may have noticed buildings turning pink or flying the organ donation flag this week – and on social media you will find a lot of awareness activity under the hashtag #OrganDonationWeek. Please do join in, share these messages with your networks, spark that conversation in your household, your school, your organisation and team, and in your communities. This is the genuine power of one conversation to save lives and tackle inequalities.
Indeed you are actually more likely to receive a transplant than be a donor, and I’m sure we’d all want to receive a transplant if we or our family needed one, but without a donor there is no transplant. So have that conversation today, spread that conversation widely, and together we can save lives.
Have a good weekend,
Mahmud
Hello, my name is Amritpal.
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