October 2001
FIGHTING BACK EHJ
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The London Borough of Camden and The Anthony Nolan Bone Marrow Trust are working together to recruit council staff as bone marrow donors. Kim Brett and Kay Caroll introduce the campaign and explain the complexities of running a clinic.

The Anthony Nolan Bone Marrow Trust, located at the Royal Free Hospital in Camden, manages the world's first and one of the largest fully independent registers of potential bone marrow donors, with over one quarter of a million volunteers. The Trust was started in 1974 by Shirley Nolan, in a vain attempt to save the life of her son Anthony, who sadly died five years later, aged seven, of an immune deficiency disease without a matching donor having been found.

NEED FOR DONORS
Each year, thousands of people with bone marrow disease such as leukaemia, aplastic anaemia and inborn metabolic and immune deficiency conditions reach a stage when only a bone marrow transplant can possibly save them.
Family members, particularly brothers and sisters, can be the best matches but due to the average family size, only around 30 per cent of patients have a suitable donor. Therefore, unrelated donors are desperately needed - in particular, donors from ethnic minorities and mixed ethnic backgrounds. The likelihood of finding a matching donor will be considerably greater in those from the same ethnic background as "tissue types" are inherited characteristics.
For a variety of clinical reasons, male donors from any ethnic background are usually preferred, however this does not preclude women donors. There are strict medical and other criteria as to who can join the register. Briefly, potential donors must be:
- aged between 18 and 40 (after joining, it is possible to donate up to the age of 60);
- in excellent health;
- of minimum and maximum weight criteria;
- prepared to undergo a general anaesthetic and suffer some short-term discomfort to try to save the life of another person;
- a permanent resident in the UK and likely to be so for at least the next two to three years;
- prepared to take time to give several blood samples as and when required; and
- prepared and able to take time off work or from normal duties if required to donate marrow.

REGISTRATION AND DONATING
All potential applicants are required to read the information pack provided by the Trust and are encouraged to discuss all the implications with family and friends, before submitting a medical form to the Trust. Potential donors can choose for a blood sample kit to be sent to them, for a sample to be taken by their GP or local hospital (there is a different procedure where a registration clinic is set up by an organisation).
Initially, a small blood sample is taken to register the applicant's tissue type on the Trust's confidential database. If a match is made with a patient, the volunteer will be selected for further testing. This includes further blood samples, usually spread over a series of months. The testing is essential to determine whether the volunteer would be suitable to actually donate bone marrow.
If a volunteer is then chosen to donate, a full medical is arranged for at least three weeks prior to donation. This is to ensure that the volunteer is fit enough to undergo a general anaesthetic and the procedure of stem cell donation itself.
There are two main ways of obtaining the stem cells needed for transplant. The most routinely used method is to have the stem cells withdrawn from the bone marrow within the pelvic bone by needle and syringe under a general anaesthetic, which involves a two-night hospital stay.
The other method of collecting the cells is through the peripheral blood. With this method, a donor has a five-day series of daily injections of a growth factor - granulocyte-colony stimulating factor (G-CSF). G-CSF occurs naturally and controls bone marrow reproduction. When injected it causes the extra stem cells to spill out from the bone marrow into the peripheral blood. The stem cells can then be collected as an out-patient on a blood cell separator machine in a process known as apheresis.
Ideally, all new donors should be willing to consider either method of donation, but they must at least be willing to donate stem cells from the marrow. The Trust advises that once the first sample is given it is difficult to say when the donor's tissue type will match that of a patient - it could be within a few months or it may be many years.

EMPLOYEE PROFILE
The Camden Employment Profile 1999, provides information on the composition of Camden Council's workforce. Of the 7,197 employees, 2,494 (37 per cent) are male and 4,184 (63 per cent) female.
At a glance, the ethnicity of the workforce is 4,655 (70 per cent) white, 1,167 (17 per cent) African/Caribbean, 451 (7 per cent) Asian and 405 (6 per cent) other. There are 1,230 male and 2,176 female employees that fall within the 18 to 40 age group criterion, which represents 47 per cent of the workforce. However, the profile does not provide information on the ethnicity of individual employees in this group.
As potential volunteers for the register could be targeted using the age criteria, a target group of 3,406 council employees was selected. However, this number is substantially reduced when the medical and other restrictions are taken into account. It is also essential to ensure that only fully informed and committed individuals are encouraged to join the register.

THE COUNCIL'S ROLE
The council was well placed to provide a valuable contribution to the work of the Trust by actively encouraging and enabling its staff to participate in the donor programme. A report, authored by Kim Brett incorporating data on the age, gender and ethnicity of council staff and guidance issued by the Department of Health, recommended that:
- a clinic could be run by the council to encourage staff to become volunteers; and
- staff that are registered with the Trust to have up to 14 days' paid leave to undergo the donation operation.
It was difficult to predict how many staff would be likely to register from the target group of 3,406. It was likely that many would not be prepared to participate and a substantial proportion would fail the strict medical and other essential criteria. The report suggested that only a small handful of staff would be asked to undergo the donation procedure each year. However, donors offer the hope of a future to patients whose disease would almost certainly otherwise prove fatal.

THE TRUST'S ROLE
There are three stem cell registers in the UK - two linked to the Blood Transfusion Service and The Anthony Nolan Trust. The Anthony Nolan Trust's register is the largest in the UK and provides the most donors. It is also a registered charity without any government funding, reliant on public donations. As all registers are searched when looking for a matching donor, potential donors should only join one panel.
The Trust's primary roles are to:
- recruit healthy, well-informed, committed potential stem cell donors to the confidential donor database;
- ensure donor safety and wellbeing at all times from recruitment through to donation;
- provide an efficient donor service to accredited transplant centres and offer the chance of life to their patients in need of life-saving stem cell transplants;
- work closely with Camden Council in an ongoing donor awareness programme among staff and the local community;
- effectively organise and run donor recruitment sessions in accordance with ANBMT and Camden's policies; and
- maintain and develop long-term links with Camden in this vital active awareness programme.

DONOR RECRUITMENT CLINIC
There are two ways to join the Trust register, either by applying for a postal pack, which an applicant can take to a GP for them to take a blood sample, or for the blood sample to be taken at a donor recruitment clinic.
Running a donor recruitment clinic takes careful preparation and planning if it is to be a success, however the Trust provides continuous advice throughout the whole process. A comprehensive guide has been produced by the Trust which covers the following issues: the setting up of a steering committee; liaison with the Trust's donor recruitment centre; deciding on a venue; booking the clinic; personal appeals; appointment systems; administrative and medical staffing; planning the space, equipment, medical and information kits; medical guidelines; and the recruitment day and transportation of samples.
While the Trust will reimburse volunteers for loss of earnings, it costs £8m annually to run the Trust and reimbursement of earnings can divert funds from its other vital activities - each initial blood sample costs the Trust £25 while further screenings cost £50.
Once agreement was obtained from the chief officers at Camden, a steering group was set up for a donor recruitment clinic. It was comprised of representatives from the council's employment advisory team, press office, occupational health unit, the environmental health department and the Trust's donor recruitment division. The employment advisory team and occupational health unit had previously run campaigns to encourage staff to take up flu vaccination and osteoporosis screening.
The council launched a small publicity campaign to generate interest for the programme: a press release generated a small piece in a local newspaper; the "Fight Back" poster was displayed in all council buildings; notice of the clinic day appeared on all employee e-mails; articles appeared in the council's employee and environment department newsletter and on the council's intranet; and a message was placed on employees payslips.
A stall staffed by Trust employees was placed in the canteen on the day before the clinic which provided information and advice to potential volunteers. Information packs incorporating medical assessment forms were sent out in advance. Two Trust employees and a phlebotomist staffed the clinic. The occupational health unit set up an appointment system with 15-minute intervals to enable medical forms to be assessed and to allow the potential volunteers to ask questions. The clinic produced 33 volunteers for the register - a result which delighted both Camden and the Trust and resulted in the joint decision to run the clinic as an annual event.
The "Fight Back" campaign was seen as an excellent opportunity to forge a partnership with an external organisation that would further health improvements. The key to its success was in the time spent in planning the event and to all the staff that were committed to it - especially those that became volunteers.
Steering Group: Geoff Mitchell - London Borough of Camden Employment Advisory Team; Val Hughes - Camden Occupational Health Unit; Sam Hart -- Camden Press Office; Kay Carroll - Donor Development Manager, Anthony Nolan Bone Marrow Trust; and Kim Brett - Camden Principal EHO.

For more information on bone marrow donor recruitment contact Anthony Nolan Bone Marrow Trust on Tel: 020 7284 1234. E-mail: kayc@anthonynolan.com or visit the website: www.anthonynolan.org.uk

KIM'S PERSONAL EXPERIENCE
Six years ago, a family weekend away was bought to an abrupt end when the five-year-old nephew of Kim Brett, principal EHO at Camden BC, was taken ill. He was subsequently diagnosed with Leukaemia. Not long after this, a close friend of Kim's was diagnosed with breast cancer and just over 12 months later, her 12-year-old niece was diagnosed with a rare form of bone cancer. Then, two years ago, Kim's boss Shan confided that she too had breast cancer. Shortly after this her dear friend died.

Cancer has clearly had a big impact on Kim's life - yet when the issue of Kim becoming a bone marrow donor arose, she realised how difficult it was to obtain any useful information, even from within the hospitals. It was casually suggested that there might be a role for the council in recruiting potential bone marrow donors, which triggered the launch of the "Fight Back" campaign.

The Anthony Nolan Bone Marrow Trust provided Kim with a comprehensive donor clinic and recruitment pack and the council's equalities unit provided a report on the age, gender and ethnicity of all its staff.