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27 Jun 2006 : Column 44WH—continued
I answered the hon. Gentleman’s questions on the powers of the regulator when referring to other questions asked. He also raised the issue of reservoirs. The Government have a twin-track approach to water supply, which requires demand-side management options, such as helping to encourage behavioural change, alongside the use of new technologies to control leakage. Such options need to be fully deployed before new supply measures are adopted, because new and enlarged reservoirs are potentially costly and have long lead times. There are proposals in the industry’s 25-year water resources plans for five new and three extended reservoirs. Four of the new reservoirs are planned for the south-east. The 25-year plan is rightly
intended to balance supply and demand and ensure that water efficiency and leakage rates are examined seriously and appropriately before we consider introducing extra supply measures.
I shall finish by outlining the process for the Thames Water drought order application, as my hon. Friend the hon. Member for Leyton and Wanstead asked me to do. The statutory process requires the company to advertise its proposals in the area in which the restrictions would apply. People will have seven days from the date of advertisement to object to the Secretary of State, which they may do by e-mail or letter. From his speech, it is clear that when he sees the advertisements he will know what to do.
As with the other recent drought order applications, we will arrange for the company’s proposals and the arguments of objectors to be aired at a hearing presided over by an independent inspector. The inspector will examine whether the legal criteria have been met, which is a prerequisite for recommending that a drought order should be made. In addition to the objections made, the hearing will address other issues, such as whether the best use has been made of the resources available to the company, both service and groundwater, and the matter of leakage. The inspector will produce a report with recommendations, which will be considered by my officials. It will then be up to the Government to make a decision.
Mr. Martin Caton (in the Chair): We must now move on to our next debate.
Jeanette Crizzle
12.30 pm
Mr. Philip Hollobone (Kettering) (Con): May I place on record my thanks to Mr. Speaker for granting me permission for the debate today on Mrs. Jeanette Crizzle and the wider issue of bone marrow donation? I also welcome the Health Minister to her place.
Mrs. Jeanette Crizzle is a Kettering resident who, in October 2005, was diagnosed with acute myeloid leukaemia. That is obviously tragic news for her and for her wonderful family: her husband, Adam, and her two teenage children, Emily and Nicholas. Jeanette is an English teacher at Bedford preparatory school and she has been in the teaching profession for the best part of 30 years. In the initial fight to combat her condition, there was a desperate need to find a suitable donor who would enable her to have a bone marrow transplant.
The complication in Jeanette’s case is that she comes from a mixed Mediterranean and English background. She is 75 per cent. Mediterranean and 25 per cent. English. Her mother was Greek, so she gets 50 per cent. of her background from Greece, and her father was 50 per cent. Italian and 50 per cent. English. It has been extremely difficult to find suitable bone marrow to match her heritage. Indeed, it has sadly proved impossible thus far.
When the Crizzle family was advised in January this year 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. The purpose of today’s debate is not only to highlight the unusual plight that Jeanette finds herself in, given her unusual background, but to praise Adam for the tremendous campaign that he has launched and to prompt the Government to take further action to try to encourage wider bone marrow donation.
Adam gave up his job and launched an international campaign, starting with e-mails and internet activity among his friends and acquaintances. The school where Jeanette worked, Bedford preparatory school, has swung in behind the campaign, as has the Anthony Nolan Trust. Mobile clinics have been established in Bedford, Kettering and elsewhere to try to encourage people of Mediterranean origin to become bone marrow donors. An extensive media campaign has been launched that has achieved terrific coverage, not only in the regional media but further afield. Initiatives included publicity on London’s Greek radio and trying to tap into communities in Greece, Italy, the United States and Australia, all in a search to find a suitable donor.
It has been a remarkable effort, reflecting Adam’s positive philosophy on the dilemma in which he and his family have found themselves. To quote from one of the many e-mails that he has launched as part of his campaign:
“I have had a few people contact me to ask if I would join them in a demonstration with placards outside No. 10 Downing Street, to highlight the lack of funding and support for cancer research in general. Having reflected upon this suggestion, I found the words of Marcus Aurelius coming into my mind: ‘How much more grievous are the consequences of anger than the causes of it.’
Even though I sincerely appreciate the sentiment of people wanting to highlight this cause, I would prefer another approach. Ultimately, I believe that the way forward for a campaign of this nature is not through protest but by debating in a courteous and effective manner.”
That is the tremendously impressive and positive approach that has coloured Adam’s campaign throughout.
The highlight of the campaign so far has been a meeting with the Minister of State, Department of Health, the hon. Member for Doncaster, Central (Ms Winterton), on 19 April, which was held at the Department. At that meeting, Adam was able to present a report to encourage the Government to undertake an initiative to promote the benefits of bone marrow donation among 16 to 18-year-olds. I am pleased that the Department has decided to take up that initiative and I praise the Department and the Minister for so doing.
The Government’s positive response was confirmed in a letter from the Minister to me on 12 May, and on 8 June Adam Crizzle was invited to an important meeting with NHS Blood and Transplant to plan the details of how such an education initiative could be launched. I understand that an educational pack—with a website alternative—is to be launched in September 2007, which will be targeted particularly at sixth formers.
Mr. Peter Bone (Wellingborough) (Con): I congratulate my hon. Friend on securing this important debate; I also attended the meeting with the Minister. On the point about education, does he agree that because of the difficulty in filling donor places in the Asian community, it would be good to concentrate initially on areas where there are ethnic minorities?
Mr. Hollobone: I am grateful for that intervention and I appreciate my hon. Friend’s attendance at the meeting in the Department. I share his concern that there are too few donors from ethnic minority communities. There is also a wider issue, which is that there are too few donors, full stop, from any community. I shall develop that point later.
An important part of any debate about bone marrow donation is the general misconception among the population about how easy it is to become a bone marrow donor. Since Jeanette was diagnosed with myeloid leukaemia in October 2005, it has become obvious to Adam that there is a terrible misunderstanding of what is involved in being such a donor. Most people assume that being a donor involves a major operation, and that is one of the chief reasons why people are not offering themselves as donors, and why the suffering of so many cancer patients continues. One of the main purposes of Adam’s campaign is to change people’s conceptions of how difficult it is to be a donor. Initially, donors have to give only a 4 ml blood sample. After that, there are two methods of bone marrow donation: the traditional bone marrow harvest and the newer, increasingly used, peripheral blood stem cell donation.
The former is a medical procedure that involves a hospital stay and a general anaesthetic. The newer method provides an alternative collection that many donors find simpler. The donor has some injections in the week before donation, to encourage blood stem cells to move from the bone marrow—where they are
first created—out to the circulating bloodstream. They are then collected on a blood separator machine in a collection lasting for up to five hours.
Mr. Mark Satchell, a UK donor in June 2004, recently said:
“There’s not much to say about the actual process except how easy it was. It was really no different to giving blood, except it lasted for four hours—but there was no discomfort or pain. To anyone thinking of becoming a donor, who may be put off by the thought of the procedures you need to go through, I would say it’s much easier than you would believe”.
If the general UK population understood that point, far more people would come forward to be donors.
That was confirmed by an exercise conducted at a school in Bedford by Mike Mallalieu, the head of science, who undertook a presentation and two questionnaires for sixth-formers in the school. Before the exercise, the first questionnaire found that 25 per cent. were prepared to be a donor, and 65 per cent. were not sure. After the presentation, when it was made clear how easy it is, 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.
There are 9 million bone marrow donors on registers worldwide, and their details can be accessed through Bone Marrow Donors Worldwide. However, in the UK there are only 371,000 donors on the Anthony Nolan Trust register, and 2.1 million blood donors on the NHS blood and transplant and British bone marrow registers. During the last three years, however, there has been an increase of only 100,000 blood donors coming forward to be bone marrow donors as well. I am one of those: last month I signed on to the British bone marrow register at my regular blood donation session.
The problem is that a person cannot become a bone marrow donor on the Anthony Nolan Trust register if they are over 40, or on the British bone marrow register if over 44. I would like urgent attempts to be made to raise those age limits, because I think that hundreds of thousands of people over the age of 40 or 44 in this country would come forward to be donors if they understood how easy it is.
Of course most people on the register are never required actually to donate their bone marrow. For example, of the 371,000 on the Anthony Nolan Trust register, only about 300 a year are called on to be donors.
My hon. Friend the Member for Wellingborough (Mr. Bone) made an excellent point. In this country, most donors are white and caucasian. There is a particular lack of donors coming forward from mixed-heritage backgrounds, and Jeanette’s case sadly illustrates that. Any efforts that can be made to encourage donors from ethnic minority communities would be welcome.
We must not lose sight of the fact, however, that there are not enough bone marrow donors, full stop. Indeed, on the British bone marrow register, there are 273,000 donors, which is only 1.2 per cent. of the 22.5 million people in this country aged between 18 and 44.
In conclusion, I would like genuinely to thank the Government for their positive response to the initiative of Adam Crizzle, but there is much more to do. My fundamental point is that the Government need to get across how easy it is to donate bone marrow, and if they can do that, hundreds of thousands more people will come forward.
I know that Adam would want me to use this debate to thank the many people who have helped his campaign and offered assistance to Jeanette, not least those at Kettering general hospital and other health practitioners; the Anthony Nolan trust; the Leukaemia Society; Chris Godwin, the head teacher at Bedford preparatory school; Mike Mallalieu, the head of science at Bedford high school; the shadow Minister for health, my hon. Friend the Member for Billericay (Mr. Baron); Mrs. Liz Reynolds at the NHS Blood and Transplant service; and, of course, the Health Minister and her officials.
I shall conclude my remarks with a quotation that Adam provided. The American writer, Norman Vincent Peale, said:
“You must never conclude, even though everything else goes wrong, that you cannot succeed. Even at the worst there is a way out, a hidden secret that can turn failure into success and despair into happiness. No situation is so dark that there is not a ray of light.”
12.46 pm
The Minister of State, Department of Health (Caroline Flint): I congratulate the hon. Member for Kettering (Mr. Hollobone) on securing the debate and welcome the hon. Member for Wellingborough (Mr. Bone). They both attended a meeting earlier this year with the Minister of State, Department of Health, my hon. Friend the Member for Doncaster, Central (Ms Winterton), to discuss awareness of the need for donors of bone marrow and what is involved, which was covered by the hon. Member for Kettering. That is an important part of how we can encourage an increasing number of people to come forward.
I shall talk later about the opportunity presented by the work that is being undertaken with the valuable input from Mr. Crizzle in respect of a school pack aimed at 16 to 18-year-olds, which will deal with bone narrow donation and the range of possibilities whereby young people, as they become adults, can perhaps regard that as part of their citizenship and that of their families and communities. One thing for sure is that none of us know when we or our families will need a donation of some sort, whether in relation to bone marrow, blood or organs.
Over the past few years, my hon. Friend the Member for Doncaster, Central has contributed greatly to raising the awareness of such issues and the ways that health professionals can broach them with their patients, as well as how we can get the message across more widely. It is important to use multi-media opportunities, an area that we need to know more about. The issue is particularly important, as was pointed out by the hon. Member for Kettering, for people from black and minority ethnic backgrounds. We live in a more diverse society and our blood is a mix of all sorts of genetic heritages and international links in one way or another.
The British Bone Marrow Registry is managed by NHS Blood and Transplant. It also operates on behalf of blood services in Northern Ireland and Scotland. Furthermore, I am talking about what we must do not nationally, but internationally. We must raise consciousness in other countries through Bone Marrow Donors Worldwide, an internet-based organisation with more than 10 million registered potential donors. I am pleased to say that we are one of the largest contributors to that internet registry of opportunities for people to receive donations.
The BBMR contains details of potential stem cell donors and donors of stored cord blood units. It recruits stem cell donors from active blood donors between the ages of 18 and 44. I shall touch again on the point raised by the hon. Gentleman about the age thresholds within the area. Cord blood units are collected from the placenta of new-born babies in National Blood Service partner hospitals. The NHS cord blood bank, which is run by NHSBT, was established in Edgware in 1996. It is one of 10 internationally accredited cord blood banks to date.
I understand that 122 cord blood units have been issued for transplantation. Some 37 per cent. of cord blood units issued came from BME donors, and 44 per cent. of the patients receiving cord blood came from BME communities. That shows how science gives us another opportunity to supply demand in areas in which, 10 to 20 years ago, the chances of success using that sort of donation were not as great as they are today, with advances in technology and skills.
The BBMR works closely with other registers, including the Anthony Nolan Trust and the Welsh Bone Marrow Donor Registry. They can make reciprocal arrangements when seeking matches, which is important in terms of what is happening in our island and around the world.
The BBMR is directly funded by a grant from the Department of Health. During the past three years, it has received £10 million in revenue to fund the addition of 120,000 potential stem cell donors to the registry. At least 4,500 of those donors come from black or minority ethnic communities. Funding for 2006-07 has recently been agreed, and £1.82 million in revenue has been allocated to support the register and increase donations from BME donors.
As a result of Government funding, the BBMR has one of the best-quality registries in the world, although that is not to say that more cannot be done. We must examine how and where we need to increase donor numbers, particularly from communities that are not as well represented as they should be. At the same time, it is fair to recognise the achievements that have been made, and the fact that our register has such a high and internationally trusted reputation.
Two primary concerns guide the BBMR’s strategy. The view at a recent World Marrow Donor Association meeting was that the majority of non-BME patients may find some type of donor, as there are several valid ways to make transplants more widely available. However, a higher proportion of BME patients and patients of mixed race have less chance of finding a perfect match. In this diverse world in which diverse families live, we need to address that. As the BBMR grows, the chance of a newly recruited donor adding a new phenotype or individual characteristic to the registry falls. The more that we can do to increase take-up, the more opportunities there will be.
Mr. Crizzle’s report on the availability of bone marrow donors for UK leukaemia sufferers of Mediterranean origin was important, because it rightly focused on the need to recruit more donors to the UK registries—the Anthony Nolan Trust, the BBMR and the Welsh Bone Marrow Donor Registry. He concluded, and we agree, that that can best be done by raising awareness of bone marrow donation.
We can make more treatment available and put more money into cancer research, but if we do not have the donations, which are the complementary part of the process, in some respects it will not matter how much we have in those areas. We need that important part of the jigsaw.
Experience tells us that raising awareness increases take-up. Analysis shows that the register has recruited 8 per cent. of active blood donors to join the BBMR in the past three years, and the BBMR represents more than 20 per cent. of our active blood donor base. That is quite important, because it was felt that if we could get people to donate blood, the next step—this follows on from the hon. Gentleman’s example from his own experience—would be for them to explore the opportunities of making even more of a contribution to their fellow citizens.
For that reason, NHSBT deliberately recruits to the BBMR from the active blood donor base. Because donors are already fully screened and have made a commitment to give blood, they are more likely to donate bone marrow.
During the calendar year 2005, 195 donors were matched to patients. Of those matches, 166 went ahead, 10 donors were deferred for medical reasons, five withdrew and 14 were cancelled for patient reasons. However, we need to focus on recruiting people from black and minority ethnic backgrounds and to expand the number of phenotypes present on the BBMR. Awareness, education and working directly with those involved are part of that.
A point was made about age limits. Although donors will remain on the BBMR until the age of 60, clinical evidence from the national marrow donor programme shows that the best outcomes are achieved using male bone marrow donors between the ages of 25 and 40. Although the BBMR’s policy is to accept anyone who is eligible to join the register, it is considering how to use that evidence to target specific groups of donors.
I understand that discussions are taking place between the UK bone marrow registries on the possibility of raising the age at which bone marrow donors can be recruited. Consensus between the registries has not yet been reached, but NHSBT continues to look at that area. Given where we are, it is important to target and focus where we can.
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