Give and Let Live Programme

Part of the debate – in the House of Commons at 6:02 pm on 3 December 2009.

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Photo of Philip Hollobone Philip Hollobone Conservative, Kettering 6:02, 3 December 2009

I thank Mr. Speaker for allowing me to speak on this topic in the Adjournment debate tonight, and I welcome the Minister from the Department of Health to her place. I declare an interest as a trustee of the Jeanette Crizzle Trust, which will feature regularly in tonight's debate.

The executive summary of my remarks is that the NHS Blood and Transplant's Give and Let Live donor education programme is a wonderful scheme, and I praise the Government for introducing it. The problem is that only 7 per cent. of schools are involved in it, and I urge the Government to do far more to promote the scheme among schools.

The longer version of my speech now follows. The Jeanette Crizzle Trust is a research organisation that has been set up to measure the success of that education programme and to establish the degree of public awareness of blood, organ, bone marrow and tissue donation. It aims to achieve those ends by conducting a series of research projects that are likely to take place over many years, including independent tracking research. The trust's aim is not to promote blood, tissue, bone marrow and organ donation itself, but to monitor the success of the Government's Give and Let Live donor education programme.

That all started in October 2005, when Mrs. Jeanette Crizzle, who was a resident of Kettering, was very sadly diagnosed with acute myeloid leukaemia. This was obviously very tragic news for her and her wonderful family: her husband Adam and her two teenage children, Emily and Nicholas. Jeanette was an English teacher at Bedford preparatory school, and she had been in the teaching profession for the best part of 30 years. In the fight to combat her condition, there was a desperate need to find a suitable donor who would enable her to undergo a bone marrow transplant. The complication in Jeanette's case was that she came from a mixed Mediterranean and English background; her mother was Greek and her father was half Italian and half English, so Jeanette was 75 per cent. Mediterranean and 25 per cent. English. It was extremely difficult to find a suitable bone marrow donor to match her heritage; in fact, it proved impossible. Very sadly, Jeanette died in October 2006.

When the Crizzle family were advised in January 2006 that it was unlikely that a suitable bone marrow donor would be found, Jeanette's husband Adam decided to give up his job, not only to care for her but to launch an international campaign to try to find a suitable donor. He started with e-mails and internet activity among his friends and acquaintances. Bedford preparatory school, where Jeanette worked, swung in behind the campaign and mobile clinics were established in Bedford, Kettering and elsewhere to try to encourage people of Mediterranean origin to become bone marrow donors. An extensive media campaign was launched and achieved terrific coverage not only in the regional media but further afield. Initiatives included publicity on London Greek Radio and attempts to tap into communities in Greece, Italy, the United States and Australia, all in a desperate search for a suitable donor. It was a remarkable effort, reflecting Adam's positive philosophy about the dilemma in which he and his family found themselves.

The highlight of the campaign was a meeting at the Department of Health with Ms Winterton, then a Health Minister, in April 2006. At that meeting, Adam presented a report to the Minister to encourage the Government to undertake an initiative to promote the benefits of bone marrow donation in schools. The Department decided to take up the initiative, as it was in line with some of the thinking that it had been developing. The Government's positive response was confirmed in a letter from the Minister in May, and in June Adam was invited to an important meeting with the NHS Blood and Transplant service, to plan the details of how such an education initiative could be launched. That was the first of a series of many meetings that Adam has had with the service.

The important part of Adam's initiative and any debate about bone marrow donation relates to the general misconception among the population at large about how easy it is to become a bone marrow donor. Following Jeanette's leukaemia diagnosis in October 2005, it became obvious to Adam that there is a terrible misunderstanding of what is involved in being such a donor. Most people assume that it involves a major operation; in fact, it can be no different to giving blood, except that it lasts rather longer. No discomfort or pain is involved at all. I have to say to anyone thinking of becoming a donor, but put off by the thought of the procedures that they might need to go through, that it is a lot easier than most people think. If the general UK population understood that point, far more people would come forward to be donors in the first place.

That was confirmed by an exercise conducted at a school in Bedford by Mike Mallalieu, head of science, who, with Adam, undertook a presentation and two questionnaires for sixth formers at the school. Before that exercise in 2006, the first questionnaire found that 25 per cent. of the students were prepared to be a donor, and 65 per cent. were not too sure. After the presentation, when it had been made clear how easy donation was, 89 per cent. said that they were prepared to be bone marrow donors, and only 3 per cent. were not sure. Those findings so impressed the Department of Health that it has decided to take up Adam's initiative.

The statistics are startling. Most people on bone marrow registers are never required to donate their marrow at all. For example, of the 371,000 people on the Anthony Nolan Trust register, only about 300 a year are called to be donors. Indeed, there are some 273,000 donors on the British bone marrow register, which is only 1.2 per cent. of the 23 million people in this country aged between 18 and 44 who would be eligible to donate.

In January 2007, I was delighted to be able to raise this matter with the then Prime Minister, Tony Blair, at Prime Minister's questions. I asked him:

"Will the Prime Minister confirm to the House his Government's commitment to launch a donation awareness campaign in all secondary schools in September?"

He replied:

"We are indeed developing an education pack for schools to promote donation among 14 to 16-year-olds, and that pack will be offered to every school from this September onwards. In addition, we are looking at how we can build up our organ donation levels to those of other European countries. A taskforce is looking at recommendations and it will report shortly. I very much hope that that will align our thinking with that of the voluntary organisation that the hon. Gentleman has just mentioned. This is a serious question, particularly for people who suffer from leukaemia, as Mrs. Crizzle did; there is a real opportunity to make a difference in saving lives if we can extend the organ donation range."-[ Hansard, 24 January 2007; Vol. 455, c. 1418.]