New Petitions

Many of you will have heard about Millie's campaign through the media. Twenty-year-old Millie Forbes from Aberdeenshire was originally diagnosed with acute myeloid leukaemia 18 months ago. After six months of intensive chemotherapy in Aberdeen royal infirmary, she appeared to have overcome the disease.However, a routine blood test taken this summer revealed that the leukaemia had recurred and Millie was told that a bone marrow or stem cells transplant offered her her only chance of survival. None of the 345,000 existing potential donors on the Anthony Nolan Trust register was a match, so a global search and an anxious race against time to find a donor began.Millie's campaign started in August 2003 in order to help to save the lives of people similar to Millie and thousands of other leukaemia sufferers who are waiting for a transplant—people like you and me. It aims to raise public awareness of the fine work of the Anthony Nolan Trust and other bone marrow and stem cell registers, and to encourage more people to join the stem cell register. It also aims to raise funds to help pay the costs of their vital and life-saving work, which receives no Government or lottery funding but depends on public support.In the past four months, the nationwide response from the British public has been overwhelmingly generous. With help from various branches of the media and from several celebrities, including Billy Connolly, the campaign has become high profile. There have been more than 12,000 hits on the campaign website and messages have come in from Europe, America, Japan and Australia. More than 60 clinics were set up nationwide in response to the campaign, and thousands of new potential donors have been added to the register. Fundraising continues—funds raised have just passed the £100,000 mark—and all funds raised are donated to the Anthony Nolan Trust.On Saturday, it was announced that a donor match has at last been found for Millie. However, the bad news is that there are thousands of people in the United Kingdom, many living in Scotland, who do not have Millie's high profile but who suffer from the same horrible disease. For that reason, the campaign continues. Millie is not able to be here today, but she has asked me to present the petition to the Scottish Parliament on her behalf. She asks that you help, please, to save the lives of her fellow sufferers by asking the Scottish Executive to run a campaign to explain to the public how simple and vital is the giving of bone marrow and blood stem cells. That simple action will encourage potential donors to sign up to a bone marrow register and will save thousands of lives. We also ask Parliament to urge the Scottish Executive to recognise and support organisations such as the Anthony Nolan Trust that are undertaking work in Scotland to recruit bone marrow donors.Convener, you will recognise that medical matters are not my forte. I ask, therefore, that all such questions be directed to Dr Stephen McEwan, the chief executive of the Anthony Nolan Trust. We are delighted that he has taken time out of his busy schedule to fly to Scotland to answer members' questions.I urge the Public Petitions Committee to refer the petition to the Health Committee for its urgent consideration.

I could do either, but I would like to put some flesh on the bones of what could be done in Scotland in respect of bone marrow donors.As Geva Blackett mentioned, the Scottish Parliament could recognise the work of organisations such as the Anthony Nolan Trust and other bone marrow registers. It could also consider running an awareness campaign, perhaps through public advertising or MSP endorsement, on the role of bone marrow registers and the life-saving work that they do. Such a campaign would be aimed particularly at recruiting young male donors and members of ethnic minorities to the registers.The Parliament could assist by increasing recognition of Scottish people who have joined registers and who have donated bone marrow to save lives. The Anthony Nolan Trust believes that being a donor is a positive life experience and that donors should be celebrated for what they undertake to do and have done.The Parliament could also promote clinics for recruiting among Government employees. The Anthony Nolan Trust recruits in a number of areas of the country in different environments. Those range from corporate environments through students at universities to patient appeals, such as Millie's, in town and village halls around the country. Government employees are a rich source of volunteers for us.Finally, the Parliament could consider the possibility of providing financial support to organisations that work in this area in order to ensure that there are more facilities for Scottish donors. We are keen to do that.

One of the trust's aims is for the UK to be represented fully on the register. It is interesting that over the past year we have recruited on to the register more than 2,500 additional donors from Scotland. That is the result of Millie's campaign and previous activity. This year, 17.5 per cent of the donors whom we have recruited have been from Scotland. One reason for that is the high-profile campaigns that have been undertaken in Scotland. Last year, we appointed a recruitment officer specifically to recruit in Scotland, which is paying dividends in recruitment of Scottish donors.

The UK has three registers: the Anthony Nolan Trust register, which was formed back in the mid-1970s; the National Blood Service register, which I think covers both England and Scotland; and a separate register in Wales. Both the NBS register and the Welsh register are tied in with the blood transfusion services in those countries.Until about three years ago, the size of the NBS register was about 100,000. During the 2001 election, there was a high-profile campaign in England by a Mrs Maddocks, whose daughter needed a bone marrow transplant. Mrs Maddocks managed to catch Tony Blair on a good day and he made approximately £3 million of funds available for the NBS register for several years. With that extra funding, the NBS register has recruited substantially more donors in England, although I am not sure how much recruiting it has done in Scotland.The Anthony Nolan Trust register currently has about 345,000 donors and the NBS register now has about 190,000, although I am not sure how that breaks down between England and Scotland. I believe that the Welsh register has about 35,000 donors.The big difference between the Anthony Nolan Trust register and the other two registers is that the other two registers are dependent on blood donors. In effect, one has to become a blood donor before becoming a bone marrow donor. The procedure is that, when a person gives blood for the first time, there is hopefully an opportunity for the nurse to ask whether he or she is interested in becoming a bone marrow donor. Obviously, that is different from the Anthony Nolan Trust register, which recruits bone marrow donors specifically. That is a major difference in addition to the difference in funding; obviously, the NBS register has central Government funding.The other difference between the registers is in harvesting—in other words, the removal of stem cells or bone marrow from the donor. At the moment, we harvest from all donors, including Scottish donors, in London. I am not aware of where the NBS harvests from its donors, but I believe that it has centres around the country. That is another slight difference in the way that we work.

In effect, the harvesting of marrow from our donors is charged to the national health service. That charge covers—for want of a better term—the variable cost of getting the donor to the hospital, hiring an operating theatre to extract the marrow and then getting the marrow to wherever it has to go. If, for the sake of argument, the donor needs time off work, the Anthony Nolan Trust will come in and settle any bills for lost income. We also allow donors to bring their relatives or friends to London to be with them when they are harvested. Obviously, we also insure the donor just in case any issue arises from the harvesting.All those costs are charged to the NHS at the time of harvesting. However, the NHS does not pay for the cost of recruiting the donors, which is substantial. At the moment, it costs between £50 and £70 to tissue-type donors and put them on our register. That cost is covered by the charity's fundraising.

Both organisations have a role. There is no doubt that blood donors make good bone marrow donors—they like having needles stuck into them, they are used to the procedure and their outlook is perhaps a little more altruistic. Our focus on bone marrow donors allows us to focus on certain sectors of the population. Being a member of some groups of people is a hurdle to becoming a blood donor. For example, young males and people from ethnic minorities are perhaps not so integrated with the idea of being a blood donor. We feel that we can focus on those people. A patient from those groups is sometimes a spur to recruit donors, as can be seen from Millie's campaign and many other campaigns. If a person from within an ethnic minority needs a bone marrow transplant, people from their community often respond by registering.Another element is the use of good role models such as sportspeople and pop stars to say that being a bone marrow donor is a good thing. That allows us to get over the simple message about what it means to be a donor. Both the NHS and the Anthony Nolan Trust are keen to recruit well-motivated and well-informed people who are prepared to proceed to harvest.

The petition is our first point of contact, in this forum. We have started to find out whether there is any interest in the Scottish system but, in effect, the petition is the first move forward.

To go on the register, a person gives a small blood sample and fills in a medical questionnaire to assess whether they would be acceptable as a bone marrow donor. For example, a person cannot be a bone marrow donor if he or she suffers from hepatitis or another disease that would affect any patient who was to receive their bone marrow. Once a blood sample has been taken, we tissue-type the person in our laboratories, which means that we work out to whom the bone marrow could be donated. The person's details then sit in our database, perhaps for 10 or 20 years.When a physician says that a patient needs a bone marrow transplant, the patient is tissue-typed and we find out whether the tissue type matches that of a donor on our register. If so, we contact the donor and explain that there is a match. We then take another blood sample to ensure that we typed the donor correctly and that they are still physically capable of undergoing a bone marrow transplant. If they are, the patient goes into the bone marrow transplant routine, which involves counselling and medicals to ensure that the person is fit enough to undergo the procedure.The donor can undergo one of two procedures. One is the old-fashioned method, by which the donor is put under general anaesthetic. Needles are stuck into the back of the hip bone and the marrow is sucked out and put into a bag. The bag is then taken to the hospital where the patient is being treated—the donor and the patient are treated in separate hospitals—to be infused into the patient, who will have been conditioned by having their bone marrow system destroyed by radiotherapy and chemotherapy. With good luck, the donated marrow then takes on its role in the patient.That method uses needles in the hip bone. The alternative method is to give the donor a hormone called granulocyte colony stimulating factor, or G-CSF, which puts stem cells from the donor's bone marrow into their blood stream. The donor receives a course of injections that lasts for about a week, after which stem cells are collected by extracting blood through a needle in one of the donor's arms and passing the blood through a machine that spins down the stem cells. The remaining blood is then returned to the patient's other arm. The advantages of that method are that there is no need for the donor to have a general anaesthetic and that the procedure is less mechanically damaging for the donor, who can go back to work almost immediately afterwards.We give donors the option of choosing one of those two procedures—at the moment the ratio is about 50:50.

There is a balance to be struck between explaining to potential donors how easy it is to join the register by undergoing a very simple procedure to give a blood sample, and making it clear that if they are found to be a match, donating bone marrow is not the same as having a blood sample taken. We have to inform them, for example, about the risks of going under general anaesthetic—if they choose that procedure—or the possibility that they might have to take time off work.