Organ Donation Register

Luciana Berger Excerpts

Tuesday 17th June 2014 Westminster Hall

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I thank the hon. Member for Burton (Andrew Griffiths) for calling a debate on such an important issue, and for his passionate reflections on organ donation and on the fact that the chance of life for one person can often come at a time of trauma for another family. There were also emotional and personal contributions from the hon. Members for Strangford (Jim Shannon), for Montgomeryshire (Glyn Davies) and for Foyle (Mark Durkan).

Organ donation is surely one of the great success stories of the latter half of the 20th century, not just for science, but for humanity. It is a precious thing: there can be few greater achievements than to have given life to those who were on the verge of death. Fewer than 5,000 people each year die in circumstances in which they are able to become a donor. Despite the sadness of the moment, the act of organ donation can become a major comfort to bereaved families as time passes.

There have been major improvements to the infrastructure and organisation of organ donation over the past few years. Those improvements have been reflected in donation rates, which have increased significantly. I am extremely proud of the fact that in 2001 the previous Labour Government said that we would double the number of donors from 8 million to 16 million by 2010, and achieved that target a year early, by 2009. That was thanks to an enormous effort from large numbers of people.

The recommendations from the organ donation taskforce in 2008 set in train many of the reforms that NHS Blood and Transplant has made. It laid the path for many of the improvements we have seen, such as, for example, the creation of a network of specialist organ donation nurses—already referred to in our debate—who support families in considering organ donation at a difficult time.

As we have heard, over 20 million of us are on the NHS organ donor register. Again, that is testament to the changes that have been made at every level in hospitals, to the commitment of critical care and emergency department staff to donation, and most of all to the generosity of the donors and their families.

We cannot be complacent, however. As we have heard in the debate, we have lower registration rates than some of our European neighbours, and too many people still die while waiting for a donation—three people every day, which is three too many.

We need to raise awareness, and hon. Members have been right to emphasise the need to raise more awareness of the importance of joining the register and supporting our families and friends when they do so. This year marks 20 years since the NHS organ donor register was launched, and there are now many ways in which people can sign up. There is an online form and a 24-hour donor line. People can register through a text message, at their GP’s surgery, or when they apply for their driving licence. I signed up through my Boots advantage card. Yet we still have more to do. Are there any more ways in which we can ask people to sign up? Boots advantage cards are disproportionately owned by women. There are ways in which we can target men; many supermarkets have cards. Should we be thinking about that? I would welcome the Minister’s thoughts on the different ways in which we can encourage people to sign up.

We know from market research carried out by NHS Blood and Transplant that 51% of the population definitely want to donate their organs, and 31% would consider it. Only 31%, however, have actually signed the organ donor register. The question of how to bridge that gap is vital. As MPs, we will all have received e-mails telling us that national transplant week runs from 7 to 13 July, and that is a great opportunity for us all to raise the profile of the issue. Will the Minister share with us the Department’s plans to mark national transplant week and encourage more people to sign up to the register?

As the hon. Member for Burton mentioned, we need to get more people on the register from specific communities. The challenge is not only getting more sign-ups to the register, but targeting specific communities and areas that we know are losing out from the stark inequalities in the system. My constituency is in Liverpool, in the north-west, where patients are waiting the longest for a transplant. We also have the highest death rates among those waiting. In the north-west, 62.2% of patients waited more than six months for a transplant, whereas the average for England is 47.3%; and 23.2% of patients waited more than 18 months for a lung transplant, whereas the average for England is 15.8%. Those long waits are themselves concerning, but where some people are waiting longer than others for a life-saving operation purely because of where they live, it is something we need to address urgently.

It is not just where someone lives that can affect their chance of getting a transplant operation. As we have heard, people from black, Asian and minority ethnic communities are up to three times more likely to need a transplant than others, yet because organ matching is likely to be closer when the ethnicity of the donor and recipient are the same, they have to wait much longer. On average, a person from a BAME community will wait a year longer for a kidney transplant than a white patient. Many die while waiting for an organ to become available, and the Government must urgently tackle that situation.

The debate this morning has centred on organ donation, although Members have referred to bone marrow donation, which is an important area for us to reflect on, and an area where we should look at lessons that we can learn. More than 90% of white patients in need of a bone marrow transplant find a match, but for the BAME population the matching rates can be as low as 40%, which is a difference of 50 percentage points. We need to look at that. I am of Ashkenazi Jewish descent, and I joined the bone marrow register because I know how hard it is for people from my community to find a donor.

A number of campaigns have led to a massive increase in the number of people joining that register. The Berger family—no relation to me—led the campaign #Spit4Mum. A woman called Sharon Berger had a very rare blood disease. She was of Ashkenazi Jewish descent, but she needed to find a match in a hurry. Her children, Jonni and Caroline, started the #Spit4Mum campaign, which has raised awareness among all BAME communities and had a high press profile. There was a 1,700% increase in Jewish people joining the bone marrow register in the year that they ran that campaign. We need to see that happening in all communities right across the country, and it needs to extend to organs as well.

We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government are taking to tackle it? In particular, what will the Government do to improve the diversity of the organ donation specialist nurses? Another Member raised that issue.

We need to ensure that the wishes of those on the register are granted, and we must do more to support families in that. In 2011-12, 125 families overruled the individual’s intention, as recorded on the NHS organ donor register, to become an organ donor. Of course, that is understandable. The decision to allow their loved one’s organs to be used is incredibly tough for a family to make when they are in the throes of grief. We know, however, that many family members were unaware that it was what their loved one wanted and found it difficult to come to terms with such a decision at such an awful time of loss. That is why it is vital that we encourage and support families in having conversations about organ donation. Family consent rates have been static at around 55% to 60% over recent years, but that shoots up to 95% when those family discussions take place. NHS Blood and Transplant is taking steps to address that, so I would welcome an update from the Minister on its progress.

Finally, I want to touch on the opt-out or presumed consent system. We have heard some Members’ positions on that, but if more Members had been in the debate, we might have heard a wider variety of views. Some professional groups, including the British Medical Association, consider the system to be the most effective solution in addressing the shortage of organ donors. The system has advantages. To return to an earlier point, there is a gap between the 51% of the population who definitely want to donate their organs and the 31% who have actually signed the register. We would, however, have to consider carefully the safeguards the system would need and continue to review the evidence from countries that already have it in place. Wales will be introducing the system later this year. Any change in legislation would need to have the backing of the public. Whether we agree with assumed consent or not, I hope we can all agree that it is time we started a major public debate about how we can best tackle the shortage of organ donors in this country. What steps is the Minister taking to start that national conversation?

In conclusion, this issue transcends party politics and is important to all Members. We are making progress, but we need to maintain our momentum. I welcome the Government’s strategy for organ donation, which was laid out last year. Its first goal is as follows:

“action by society and individuals will mean that the UK’s organ donation record is among the best in the world and people donate when and if they can.”

I would be very happy to work with the Minister to continue to build awareness of the importance of joining the organ donor register, and to work towards achieving that critical goal.