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BAME Blood, Stem Cell and Organ Donation

Volume 643: debated on Wednesday 27 June 2018

[Sir Henry Bellingham in the Chair]

I beg to move,

That this House has considered BAME blood, stem cell and organ donation.

It is a pleasure to serve under your chairmanship, Sir Henry. I first became aware of the issue of blood, stem cell and organ donation within black, Asian, mixed race and minority ethnic communities when I met Poonam Shah, who works in my constituency. Poonam’s husband, Rakesh, died from a blood disorder at the age of just 35. Due to Rakesh’s Indian heritage, he struggled to find a donor with the 10 matching genes that would have helped ensure that his blood would accept the donor’s cells. Eventually, an anonymous donor with eight out of 10 matches was found from South Africa for Rakesh, who had a stem cell transplant in October 2014.

I am very pleased that my hon. Friend has secured this important debate. I should declare that I am chair of the all-party parliamentary group on stem cell transplantation. My hon. Friend makes a point that is particularly relevant for the BAME community—often the donor will come from outside the UK. There have been a number of cases where there have been difficulties with visas. Time is vital in this area and we need a fast-track process to make sure that those people can get here as quickly as possible.

My hon. Friend makes a very good point. I recognise the work that he has done as the chair of the APPG on stem cells. This is a very important issue, and that is why we are having this debate today.

I congratulate my hon. Friend on securing this debate. Those from the BAME community make up 5% of blood donors, yet they make up 14% of the population. The Imam Hussain Blood Donation Campaign was set up in my own city of Manchester; it has had a tremendous success rate of 3,408 donations. To be successful, it is important to ensure that cultural initiatives such as that are taken, so that we can carry on with improvements. If not, we will carry on experiencing difficulties.

My hon. Friend makes an important point and I will refer to similar points later in my speech.

Sadly, despite receiving a transplant, Rakesh’s condition, MDS, was so advanced that he died in December 2014, leaving Poonam and their two young children. After Rakesh’s death, Poonam decided to raise funds for Anthony Nolan and raise awareness among people from south Asia and other ethnic minority backgrounds about stem cell donations.

I thank my hon. Friend for securing this debate. Does he agree that Health Ministers should work more closely with grassroots and community organisations? Currently, donors from Asian or other minority ethnic backgrounds make up just 15% of the stem cell register, but campaigns such as Cure Kaiya, which held an event in my constituency, and Match4Rajie are encouraging more people from BAME backgrounds to become registered donors.

My hon. Friend makes a very important point.

In November, Poonam’s fundraising efforts were recognised when she was awarded individual fundraiser of the year. I was so inspired by her story that I wanted to help raise awareness of the issue in BAME communities, because none of us know whether we or one of our loved ones might be a name on that list in need of a match, desperately waiting for a lifesaving opportunity. The reality is that many patients will not receive the stem cell transplant they need, because either there is no donor available or a donor cannot be found quickly enough. Only 20% of BAME patients receive the best possible match, compared with 69% of white, northern European patients.

I thank the hon. Gentleman for bringing this matter forward. I have always supported the issue of organ transplants, including for BAME people. With only six out of every 100 people who have signed up to the NHS organ donor register having told us that they are from black, Asian or minority ethnic communities, does the hon. Gentleman feel as I feel that when it comes to organ donation, every race is needed and we should urge the Minister to respond with a focused campaign for BAME donation? That is the best way forward and I think the Minister needs to do that.

I agree with the hon. Gentleman’s point. The disparity urgently needs to be addressed and I therefore welcome the very timely review by my hon. Friend the Member for Wolverhampton South West (Eleanor Smith) on BAME stem cell and organ donation.

The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. According to the review, fewer than 5% of donors who gave blood in the past year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are black. BAME people are unequally affected by that, as they are subject to a higher demand and shorter supply than other groups. The most common blood diseases that affect BAME communities are thalassaemia and sickle cell disease.

I congratulate the hon. Gentleman on securing this important debate. While we know that there are problems and that there is much still to do, will he join me in congratulating Kanya King and the MOBO Awards on all the great campaigning work that they do to increase BAME blood and organ donation? They do an excellent job. Will he also join me in encouraging other organisations and companies with existing BAME reach to campaign in a similar manner?

I agree with the hon. Lady. BAME donors make up 15% of the stem cell register; black donors make up just 1.2% of potential donors on the British Bone Marrow Registry. I hope the Minister shares my concerns about those statistics and that she will commit today to agreeing in full to the recommendations of the review by my hon. Friend the Member for Wolverhampton South West.

I thank my hon. Friend for securing this timely debate. My review, “Ending the Silent Crisis”, is about the lack of stem cell and organ donation in black and minority ethnic groups. I hope that the Minister will look at the review’s recommendations, take them on board and come back to us on them.

I thank my hon. Friend for her hard work on the review and I look forward to working together on the issue.

It is clear that increasing the number of BAME stem cell donors requires a many-sided approach, but one of the most important things that can be done is to integrate information about donation into the formal curriculum, which the review recommends. We already know that education works. For example, Anthony Nolan and other blood disorder charities have had great success working with schools, universities and colleges across the UK. Just last month, I wrote a letter to all schools with a sixth form in or near my constituency to ask whether they would consider using an assembly or personal, social, health and economic lessons to teach students about the importance of donating stem cells, blood and organs. I am delighted that one of the schools has already agreed to do so.

Since the Hero Project started in 2009, more than 32,000 people have signed up to the Anthony Nolan stem cell donor register, and approximately 16% of them are from a BAME background. The Hero Project recognises that the different religious views about organ donation are one of the barriers preventing people from signing up to the organ donation register. Anthony Nolan and other blood disorder charities recognise and respect those diverse views and tailor their message to suit different interpretations of faith. They focus on what people can do to help, not on what they cannot do.

The review found that the three main barriers that prevent people from signing up are a lack of knowledge or awareness, religious permissibility and a lack of trust in medical institutions. The opt-out system for organ and tissue donation, with additional safeguards, is welcome, but there must be an awareness campaign that is mindful of the cultural sensitivities relating to organ donation and addresses the significant pressure on NHS Blood and Transplant’s capacity to accommodate any rise in organ donations.

It is vital that we get more young people from BAME backgrounds, such as students, to sign up to the stem cell donor register, because the research shows that the younger the donor, the more likely the patient is to survive. What steps will the Minister take to ensure that all students aged 16 and above have the opportunity to learn about the importance of donating stem cells, blood and organs? There is a real desire in the BAME community —especially among the younger generation—to turn this issue around.

I was touched by the action of the Bandhan Bedford Group, a group of Asian professional women in my constituency who helped to add 300 new names to the stem cell register. They organised a stem cell drive this month in Bedford, with support from the blood cancer charity DKMS, to help Kaiya Patel, a five-year-old girl who I understand is still waiting for a lifesaving match for her rare and aggressive form of leukaemia. I know that similar drives are taking place around the country, but this is a race against time. It has been reported that, to have a chance, Kaiya needs a transplant within the next two months.

There is a strong will out there to increase the life chances of people from a BAME background. I hope that this timely review, which highlights the scale of this silent crisis, is enough to spur the Government into assisting communities with a more co-ordinated approach. This blatant inequality must end.

It is a pleasure to serve under your chairmanship, Sir Henry. I thank my hon. Friend the Member for Bedford (Mohammad Yasin) for securing this debate on an issue that is so important to my constituents in Hampstead and Kilburn. I will speak briefly.

More than 2,000 incredible people from Hampstead and Kilburn are on the Anthony Nolan stem cell register, a large proportion of whom are from BAME backgrounds. I mention that fact because, as Members from across the House have said, only 20% of patients from BAME backgrounds will get a perfect match, compared with 69% of people from white northern European backgrounds.

I declare an interest: my husband had a stem cell transplant three years ago. His donor came from this country. Does my hon. Friend agree that, if we are to meet the needs of BAME patients who require a stem cell transplant, we must work with international registers? Increasing BAME donation in the UK alone is not enough. Some 60% of UK patients already receive stem cell transplants from international donors. That is made possible by Anthony Nolan’s incredible volunteer couriers, who collect donated stem cells around the world and transport them to patients. I hope the Minister will explain what steps the Government will take to support international registers.

My hon. Friend has stolen one of the questions I was going to ask the Minister, but I will forgive her.

In 2016, a young woman in my constituency called Lara, who was 27 years old and from a BAME background, needed a stem cell donor. The constituency snapped into action and organised the Match4Lara campaign. Elana Wall and Jacob Haddad, the volunteer co-ordinators for Anthony Nolan, co-ordinated 40 volunteers who spent their evenings packing spit kits and organising spit drives and spit drive socials. I went to a spit drive in the O2 Centre on Finchley Road, and I was impressed by the enthusiasm of the youngsters—especially those from a BAME background—who realised that if they took the spit test on the spot, there was a chance they could save a life. My younger sister, Azmina, participated and said that she found the science very accessible. She understood that she needed to raise awareness of the issue among young people. She has recently had a call to say that she could be a potential match for a patient.

Will the Minister address the request to integrate awareness-raising into the school curriculum? Will she talk about how the Department of Health and Social Care can work with international donor banks? That issue has been raised a few times already. How does she intend to spread the word about stem cell donation among young people, especially those from BAME backgrounds?

It is a pleasure to serve under your chairmanship, Sir Henry. I thank the hon. Member for Bedford (Mohammad Yasin) for securing this important debate on an issue that has been exercising me for the past year. Since I became Minister with responsibility for this area, the disparity in access for people from black and minority ethnic communities to blood, organs and stem cells has been of great concern to me. I have been working with NHSBT on this theme for the past year, and I hope I can give the hon. Gentleman some comfort. We are making some progress, but I want to assure all hon. Members that I am under no illusions about how big this challenge is, for a host of reasons that I will come on to.

I thank the hon. Member for Wolverhampton South West (Eleanor Smith) for being here. I read her report with interest and agreed with every word. The principles she articulated are key to increasing donation. If I were to highlight one particular issue, it would be the culture of normalising donation in those communities. The hon. Member for Hampstead and Kilburn (Tulip Siddiq) has just given a beautiful example of how local leadership can do that, and that is something we can all take away.

Whenever we debate a subject like organ and blood donation, everyone brings their own personal story, because we have all been touched by people who have needed a transplant. That is what brings the issue alive for us; it is about saving lives.

My overall objective is to increase the rate of donation across the board. Although it is true that a person is more likely to die waiting for a transplant if they are from a black and minority ethnic community, the fact is that we are losing too many people who are waiting for a transplant. We need a concerted effort to improve the rate of donation from all parts of our society. There is much we can do to achieve that. Hon. Members will be aware of the private Member’s Bill from the hon. Member for Coventry North West (Mr Robinson), which seeks to change the opt-out system. It will be a big help, but it will not solve the problem by itself. There is a lot more we need to do to educate the public about the importance of donation and to dispel the fears and myths about it.

The Minister mentioned the private Member’s Bill of my hon. Friend the Member for Coventry North West (Mr Robinson). I hope she is aware that stem cell transplantation is very much done when the person is alive, which is what makes it so easy. People do not have to die to donate. I just want to make sure people listening to this debate know that.

That is a point well made. It is the same for blood, of course—donors do not have to die to give blood. People who give blood do so regularly because they get into the habit and it has become normal. Perhaps we need to do a lot more about stem cell transplants.

I am particularly moved to be having this debate today because only this weekend I lost a very good friend of mine to lymphoma at the age of 47. That brings home how cancer and illness can kill people at a very young age. It will be in honour of my dear friend David Furze that I will do something to reboot stem cell donation.

On the barriers to more donation, some have serious concerns about faith and religious beliefs. Tackling those concerns is a big challenge for us in Government, because of the element of trust. The hon. Member for Bedford mentioned that quite often people do not trust medical professionals, but they trust Government even less. We must find innovative ways of getting that message out. We need the right messengers. Dare I say, the people in this Chamber are among the right messengers? Most of us have respect in our communities and are able to show leadership in our communities. We can go out, speak, raise awareness and encourage donation. I have given NHSBT the challenge to do exactly that.

Other organisations are also trying to do that, such as the African Caribbean Leukaemia Trust, but they get very limited resources. One of my recommendations is about sharing resources with groups that are already organised and going out to the community, because with limited resources they can do very little.

The NHSBT strategy has that in mind. Recently, we had a faith summit where we worked with the individuals who are able to go out and give those messages. The approach must be organic. I have also tasked NHSBT to work with me to develop an MP’s toolkit to help us to go out in our constituencies and develop the right networks and links. The hon. Lady is right to say that people from these communities will listen to their elders and other representatives, and that is why we need to work through those people. We are doing that with a number of organisations.

Turning to stem cell donation, all hon. Members articulated beautifully the real disparity of access to appropriate treatment. It is only by building and diversifying the UK stem cell register that we will be able to provide the best match for patients. Hon. Members have raised the issue of an international register; the Department funds Anthony Nolan’s efforts in this area. Members of the World Marrow Donor Association already promote global collaboration. We will continue to support that as best we can, working with Anthony Nolan and NHSBT.

NHSBT continues to grow both its cord blood banks and bone marrow donor registers, with the explicit intent of increasing the number of black and Asian donors. Overall, we have paid more than £20 million to NHSBT and Anthony Nolan specifically for stem cell donation since 2015. So far, we have made some progress in increasing donations from black, Asian and minority ethnic backgrounds, but not nearly enough to address the disparity. We will all continue to make our efforts count in that area.

I pay tribute to the initiative of the Bandhan Bedford Group that the hon. Member for Bedford mentioned. If there is a good local champion that captures local imagination, real progress can be made. We all need to encourage those sorts of activities.

Turning to blood, there is a real need for black donors and donors from the Asian community to increase supplies, not least because they are more likely to suffer from diseases that will require blood transfusions, specifically sickle cell anaemia. We are undertaking initiatives to increase the number of black and Asian blood donors. We are holding “know your type” events in high population areas, where people can learn their blood type with a finger prick test. That will help NHSBT to manage its blood stocks and develop a database of exactly the type of blood that there is a shortage of.

We are supporting others, such as the music of black origin awards, to reach audiences. Those who watch “Britain’s Got Talent”—I watch it—will have seen the B Positive choir, who did so much to raise awareness and were absolutely fantastic.

In terms of outreach work, whether with the MOBO awards or otherwise, can the Minister outline the steps that have been taken to reach out via the media? I am not just referring to the national media but the culturally specific and ethnic media, which have a greater outreach in those ethnic minority communities.

The hon. Gentleman makes a good point. I could not give him a definitive answer at this moment in time. I would expect NHSBT to be using those outlets to spread the message. If it is not, I will make sure it does, but I will ask that question and I will write to him with a fuller answer.

Turning to organs, we have discussed that there are around 6,000 people waiting for an organ transplant, of whom 34% are from a black or Asian background. That illustrates the disparity, given that only 6% of deceased donors were from those backgrounds. There is a real challenge to ensure that we are able to save all the lives we can through transplant. We have a big campaign designed to improve the rates of organ donation.

We estimate that if the private Member’s Bill from the hon. Member for Coventry North West successfully passes through Parliament, it will save an additional 200 lives a year. That is not to be sniffed at. As a Health Minister, I would be failing in my duty if I did not do everything I possibly could to secure the passage of that Bill, and I will do that. But that does not alter the fact that we still need more black and Asian people to agree to go on the register. We are working on a number of tools to address people’s real concerns, whether they are about faith, belief or heritage. We need to be able to produce materials that attack misconceptions but do so in an extremely sensitive way to those who will react to them.

Again, I encourage all Members to get involved in helping us to develop those tools and in spreading those messages as best they can. We have a library of resources that are specifically tailored to particular communities, but I am always open to any suggestions for what more we can do, because ultimately this is a very serious injustice that we need to tackle. I have a very large black African Christian community in my constituency, so I am used to engaging with them, having these debates and encouraging them to sign up to the register. We can all do that.

I am very grateful to the hon. Member for Bedford and to all hon. Members who have shown support for this debate. I am under no illusion about the challenge here, but I am very heartened to see that so many Members recognise that this is a problem and are taking positive steps to do something about it. Those are the ingredients for success, but I will not be complacent—this is a tough one for us to tackle. I thank all donors, whether of blood, stem cells or organs, for everything that they have done to save people’s lives.

Question put and agreed to.