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BAME patients will continue to die unless organ donation is normalised

BAME patients will continue to die unless organ donation is normalised
4 min read

The 'disproportionally high' demand for BAME organ donations coupled with the 'extremely low' supply has created a serious health crisis, writes Eleanor Smith MP. 

If members of the BAME communities don’t make donations of blood, organs and stem cells, then people will die! This is a very real health crisis.

In fact, they are already dying. Demand is high – disproportionally high. And supply is extremely low. In blood alone, it is estimated that we will need 27,000 new BAME donors in 2018/19 just to keep up with the growing demand. BAME patients make up over a third of those waiting for a kidney transplant and they will on average wait a year longer for a transplant than a white person. 

The scale of the issue is enormous and needs to be a national priority. That is why I am pleased that following my question in the House of Commons on Tuesday (24/7/18), addressing the issue, I am to meet with Jackie Doyle-Price, parliamentary undersecretary for health and social care, to discuss it further.

I have led a review into the situation, titled ‘Ending the Silent Crisis’, which details a series of recommendations I am keen the Government takes up. The review took place over four months, consulting with NHS Blood and Transplant, charities, community organisations, medical professionals and donors themselves. Change in this area cannot be achieved without a robust, specialised and bold plan to tackle donation rates.

If you’re from the BAME community you’re never many connections away from knowing some family which have been affected by the need for a donor. I have a close Sikh friend whose daughter is in hospital waiting for a match for a heart transplant.  It is an agonising process, but it needs to be the case that people sign up to donate without that personal knowledge or connection – it needs to be done just to help others.

I could devote this entire column to producing statistics highlighting this crisis. For example, last year, in the UK, of the 1,400 people who donated their organs after they died, 29 were Asian, 22 were Black and just 14 were Mixed Race. 

The work of local organisations is the most effective way of spreading awareness about donation in BAME communities.  These organisations need the support of national organisations to help sustain their work. Meanwhile, we must grow our relationships with international organisations to access donations from across the world, and widen our knowledge of best practice.

We need to establish donation as a normal act. In some cultures, it is treated this way and openly discussed, which leads to significantly higher donation rates. In the UK we need to get to this place, where donors are admired and respected, and their altruism recognised.

Working with younger people is the best way of raising donation rates in the long term. Doing this would prevent the spread of misinformation and myths, and move the idea of donation from an oddity to something commonplace. 

There is a huge spectrum in the ways that different races, cultures and religions see donation. BAME communities cannot be treated as one group with the same fears, history, education, and cultural relationship with donation. A clear example is the relationship and the level of trust some groups have with the NHS and the Government. NHS staff need to be trained to a higher level on different cultural viewpoints. Beyond this, an awareness and respect must be developed for the donation views of religious scholars and their communities.

Everyone has a role to play, whether that be the Government, NHS Blood and Transplant, the community itself, or MPs.  

We have a real opportunity to get this right. The injustice and unfairness can go on no longer. We need to foster more superheroes in our community, who selflessly donate blood, organs, or stem cells, to others.  I’m calling on the Government, NHS bodies, communities and individuals to do more, by not only highlighting the scale of the problem, but also implementing the review's recommendations immediately, so that we can start saving more lives.

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