THE BLOG

Saving Lives by Changing Minds

12/03/2015 10:40 GMT | Updated 12/05/2015 10:59 BST

The general shortage of organ donors in the UK is well documented, but this crisis is magnified for patients from Black, Asian and minority ethnic (BAME) communities.

Take kidney donation for example. Kidney failure is up to five times more common in people from BAME communities but patients have to wait up to twice as long for a transplant as their Caucasian counterparts, due to a huge shortage of compatible BAME donors. Many often die waiting for a suitable kidney.

Consider the human cost of these statistics - the agonising wait for an organ that may never come, the lives needlessly cut short, the futures never fulfilled and the families and friends left devastated by their loss.

But there is real hope for kidney patients and their families through Kidney Research UK.

The charity has been tackling the issue of BAME organ donation head on with an award-winning programme that is helping to save lives across the UK, partly by successfully addressing perceived cultural and religious barriers to organ donation.

I first heard about the programme in my capacity as vice chair of the All-Party Parliamentary Group on Kidneys and I believe its success lies in its perfect simplicity.

Recruited and trained by the charity, groups of people called Peer Educators work closely with individuals, families, community groups and faith groups in their own BAME communities.

They offer practical help and advice, explaining the reasons for the increased risk and suggesting lifestyle changes that could help to prevent disease. They also outline treatments available for people with kidney failure and discuss organ donation, challenging some of the myths surrounding the issue.

Peer Educators don't preach and they don't pontificate. They simply discuss the issues, whilst recognising the cultural and religious sensitivities surrounding them. Many of which have historically centred on the sanctity of the body, which may explain why 70 % of BAME families refuse to let organs be taken from loved ones for transplantation in an intensive care setting.

People can identify with Peer Educators because they share the same common ground. Even if their opinions vary widely, if they have the same shared faith or background this can really help to break down initial barriers.

Over the past ten years these dedicated individuals have been involved in projects that have addressed issues across the entire kidney disease spectrum - from early detection and prevention and diabetes management to support for carers, end of life support and organ donation.

They have been able to offer advice and support to many thousands of people from BAME communities and have encouraged over 2,700 people from these groups to join the NHS Organ Donor Register. This will undoubtedly save many lives.

Kidney Research UK is currently running two organ donation awareness Peer Educator projects in Birmingham and west Scotland.

The Birmingham project, which also involves the National BAME Transplant Alliance (NBTA), is focusing on raising awareness of the important need for organ, blood and bone marrow donation within the city's Pakistani Muslim community.

It recently received a major boost when an Imam from the city's influential Green Lane Mosque provided a clear endorsement for organ donation within Islam. This was the first highly influential step in encouraging the community to donate and resulted in an overwhelming and unprecedented response.

This still remains a grey area for some, but Muslim scholars around the UK are currently looking at the issue of organ donation to try to reach some sort of consensus.

The Scottish project aims to increase the number of potential South Asian donors in Glasgow and the west of Scotland and it is already proving to be the charity's most successful to date in terms of engaging with thousands of people and achieving over 300 sign-ups to date.

Both projects have received funding from their respective governments but Scotland has been exceptionally proactive, Not only did it approach the charity for its help; it also was able to swiftly agree to funding this collaborative work.

We have to tackle this issue properly and not in a piecemeal way. I think it's time for Westminster to follow Kidney Research UK's lead.

We should establish a specific team within the Department of Health which is solely dedicated to the issue of BAME organ donation and transplantation. We also need to plan a concerted national programme to engage with BAME communities across the UK about this vital issue.

In the meantime we can all show our support by simply signing up to the NHS Organ Donor.

Register here.

Yasmin Qureshi, MP for Bolton South East, Vice-Chair of the All-Party Parliamentary Kidney Group