BAME Blood, Stem Cell and Organ Donation

Jackie Doyle-Price Excerpts

Wednesday 27th June 2018 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

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.

[Colleen Fletcher]

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.

[Jackie Doyle-Price]

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.

[Eleanor Smith]

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.

[Jackie Doyle-Price]

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.

[Mr Dhesi]

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.

[Jackie Doyle-Price]

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.