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.