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The voice of the

Sickle Cell Community


Sickle cell disorder is the worlds most commonly inherited blood condition
Issue 1
|
Summer 2008
Can pain
killers cause pain?
Radio 4
appeals for Society
Going For Gold
Dr Ade Olujohungbe chairs group
set to standardise adult care
SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 2
cont ent s
Chairpersons message 03
Directors message 05
Society News 06
Jeans for Genes 08
Regional Care Update 10
London North East Region 10
London South Region 11
London North West Region 13
Manchester & Liverpool Region 14
Service User News 15
Service Provider News 17
Research News 20
Fundraising News 25
Ask Dr Rees 31
Jeans For Genes P08
Stroke Prevention P20
Radio 4 Appeal P27
SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 3
CHAIRS MESSAGE | 03 NEWS REVIEW | SICKLE CELL SOCIETY
For the past twenty nine years, the Sickle Cell
Society has been a driver for the reform of
services for people with or at risk of sickle cell
disease. As early as 1981, the Society had
enough information from public consultation,
letters and other means, to put forward
24 recommendations on the need for
improvement of sickle cell services.
1
The full
list of the recommendations can be viewed
below. The next phase for transforming care
has four important elements and the Society
will be working in partnership with others to
realise them.
The first element is ongoing lobbying and
advocating for the implementation of the 1981
recommendations, as these were the
embodiment of patient views then, but are still
relevant for improving health, education and
social services at this time. Progress has been
made with improving access to screening and
counselling, laboratory techniques and
reporting are of high quality, the NHS PEGASUS
(www.pegasus.nhs.uk) trained practitioners and
other health care professionals are in place to
communicate results; antenatal patients and
parents have access to a range of information
materials including a handbook for parents
and leaflets in various languages
(Recommendations Nos 4-15). A major
breakthrough is the screening of newborn
babies for a sickle cell disease. (No 10),
implemented in England by the NHS Sickle Cell
and Thalassaemia Screening Programme
(http:/www.screening.nhs.uk/sickleandthal). This
is ensuring that all babies get into the hospital
system quickly, to be seen by the best experts
and receive the best possible care including
antibiotics, which has been proven to be an
effective defence against life threatening
infections. However, very little has been
achieved with the education and training of
other key professionals and employers (Nos 1,
17-21), and with the recommendations for
better public information (Nos 2&3). We have
not yet achieved all the recommendations for
government (Nos 22-24), but we are pressing
hard for free prescriptions for people with a
sickle cell disease.
The second element involves seeking
opportunities to provide the services that can
be delivered effectively at a high standard by
the voluntary sector, particularly when this is
cost effective for the NHS and possibly more
beneficial for users. Some groups, including
black and minority ethnic people will not
always be able to access traditional services,
including health care, social services and the
benefits system. The use of outreach to support
these groups is essential if we are going to
ensure that equity of access is a reality for
people in these groups and if we are to prevent
health inequalities increasing.
2
The Sickle Cell
Society could play a key role in delivering
outreach health and social services for people
with sickle cell disease. Our Regional Care
Advisors outreach programme is supported by
over 200 active volunteers, made up of
motivated members of the community. These
volunteers have local knowledge of the
geography of outreach areas; they have the
general acceptance of the local people and
often speak the language of their respective
groups. There is scope for commissioners to
make better use of the voluntary sector in
providing services at grass root level for the
communities affected by sickle cell disease.
The third element is enhancing the Societys
appeal as a credible partner in its role as a
centre for independent living. In 2005 the
Governments strategy document Improving
the Life Chances of Disabled People
recommended that By 2010, each locality
(defined as that area covered by a Council
DR Lorna Bennett FRSA
CHAIRPERSON SICKLE CELL SOCIETY
chairpersons
message
The Societys
next phase for
transforming
care...
Adult standards meeting
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 1
SICKLE CELL SOCIETY | NEWS REVIEW 04 | CHAIRS MESSAGE
1. Sickle Cell Society (1981) Sickle Cell
Disease, The Need for Improved Services,
Summary of Recommendations p4 publ.
the Sickle Cell Society
2. DOH (2006) Our health, our care our say: a
new direction for community services (4.9)
3. DOH (2007) Mapping the Capacity and
Potential of User Led Organisations in
England: A Summary of the Main Findings
from a National Research Study
commissioned by the Department of
Health pages 4-7
with social services responsibilities) should have
a user-led organisation modelled on existing
Centres for Independent Living (Prime Ministers
Strategy Unit, 2005, recommendation 4.3).
3
The Society as a grass root organisation,
engaged in providing information and advice;
advocacy and peer support; support in using
direct payments and/ or individual budgets;
support to recruit and employ personal
assistants; assistance with self-assessment;
training, patient support and lobbying on
disability equality issues; is functioning as a
Centre for Independent Living (CIL). As such,
the Society will work alongside other CILs within
a network of organisations contributing to
strategies for disabled people.
The fourth element requires leading or
contributing to the design, delivery and
monitoring of standards of care, so that people
with sickle cell disease can receive a high
quality standardised service, wherever they live
in the country. On the 9th July this year, the
Society will be launching ground breaking
standards for the care of adults with the
condition. This will give patients in all parts of
the country, an assurance that they will receive
an appropriate level of hospital and
community care. Once these standards are
implemented, this will bring to an end the
current postcode lottery situation, where the
quality of care people with sickle cell disease
receive often depends on where they live. The
Sickle Cell Society is grateful to all those who
have contributed to the development of the
SUMMARY OF RECOMMENDATIONS,
FROM SOCIETYS REPORT ON THE
NEED FOR IMPROVED SERVICES
1. That professionals (doctors, dentists,
nurses, other health workers, teachers,
social workers, nurser y staff etc) receive
information about sickle cell disease and
trait during basic and in-service training.
2. That Health Authorities adopt more
vigorous policies towards informing local
communities about sickle cell disease
trait
3. That funds for educational materials be
made available by the Health Education
Council and local health education
departments
4. That speciality designed educational
material be provided for families
affected by sickle cell disease
5. That all members of high risk groups be
screened prior to surger y and during
pregnancy to deter undiagnosed cases
of sickle cell disease and thereby avoid
sudden emergencies and complications
that could be fatal
6. That information in writing (e.g. in the form
of a leaflet) be given to people about
sickle cell disease and trait before
screening takes place
7. That screening should always include
haemoglobin electrophoresis and not just
the sickle or solubility test
8. That the person being screened be given
the result on a card stating their
haemoglobin type and not just whether
they are sickle positive or sickle
negative
9. That expert counselling should be offered
to those people found to have a trait
following routine screening prior to
surgery or during pregnancy
10. That there be national policy to screen
newborn babies for sickle cell disease
11. That screening and counselling facilities
be made available for people who wish
to find out if they carry a trait
12. That Sickle Cell Information and
Screening Centres be set up, preferably
modelled upon the only existing one in
Britain based at Willesden General
Hospital, Brent Health District
13. That Health Authorities collect statistics
about the incidence and mortality rates
of sickle cell disease
14. That patients known to have sickle cell
disease be issued with cards and be
followed up at specialist clinics
15. That specially trained health visitors be
attached to such clinics
16. That the understanding and consent of
patients or their parents always be
obtained before any research project is
undertaken
17. That teachers in schools receive
information about the education needs
of children with sickle cell disease
18. That home tuition be made available
when necessar y for children with sickle
cell disease
19. That children affected with sickle cell
disease be offered early careers
guidance by persons familiar with the
variability of the condition
20. That Housing Departments and District
Community Physicians deal more
sympathetically with the housing needs of
families affected by sickle cell disease
21. That employers be informed about the
work capabilities of persons with sickle cell
disease, so that they are not unfairly
discriminated against
22. That patients with inherited illnesses, such
as sickle cell disease be exempt from
prescription charges
23. That the government allocates funds for
research and development projects
related to provisions for sickle cell disease
24. That the Department of Health and Social
Security take a lead in ensuring that all
the above recommendations are
implemented. It should circulate
updated information to all general
practitioners and Health Authorities
Discussion of the standards
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 2
DIRECTORS MESSAGE | 05 NEWS REVIEW | SICKLE CELL SOCIETY
Its that time of the year when we gear up our
work in preparation for a busy summer season
ahead. The Society will be involved in releasing
a number of telling evidence documents, which
we hope will empower our campaign further.
As you may recall, the Societys Regional
Support Care Programme underwent its
summary assessment last year. As promised, the
report by the independent evaluators should
have been published by the time you read this.
In short, the report highlights the key role that our
Regional Care Advisors (RCAs) have played over
the three years of the project, in facilitating the
collaboration between the various stakeholders,
within the context of working with the wider
workforce for public health promotion. It
confirms that the non-medical aspects
must never be forgotten in planning and
commissioning for collaboratively supporting
those living with lifelong conditions such as sickle
cell disorders, if we meaningfully seek to improve
the quality of their lives. This is particularly
important given the uncertainty about the future
of the project due to the current funding base of
the Society. We remain forever grateful to the Big
Lottery who have funded the project over the
last three years, and enabled us to demonstrate
the huge potentials of the RCA concept. We
now urge every service user, in particular, to
bring the case of the threatened future of the
RCA project and this Health Impact Assessment
report to the attention of their local NHS
managers. The RCA project represents an
exciting collaboration between agencies and is
a model for the future. It should be embedded
in the (commissioning) system for the benefit of
service users and providers. (Dr Joan StJohn GP,
Trustee of the Society).
A couple of years ago, we mentioned a study,
then underway, to retrospectively examine
whether deaths due to sickle cell & thalassaemia
could have been prevented. The National
Confidential Enquiry into Patients Outcomes &
Deaths (NCEPOD) reported at a packed UK
Forum on Blood Disorders, held at the Robens
Suite, Guys Hospital, London on 21 May. I
represented the Society at the NCEPOD.
Lessons learnt from the NCEPOD enquiry will
inform the on-going development of the
Standards of Care for Adults with Sickle Cell
Disorders, an initiative being orchestrated by the
Society. Another development of note is an NHS
Register for Sickle Cell & Thalassaemia. Dr Phil
Darbyshire, chairman of the UK Forum on Blood
Disorders states the case for this arguably long
overdue resource.
The Standards of Care for Adults mentioned
previously shall be launched by the Society at the
Houses of Parliament, on 9 July, and discussed
further at our 29th AGM, scheduled for Saturday
19 July at the Emmanuel Centre, Marsham
Street, Westminster. As recently, this years AGM
will be an all-day event.
As usual, the AGM shall formally receive our
statutory reports and statements of accounts.
We enclose Society membership forms for your
use or distribution to family and friends.
Membership to the Society, not only entitles you
to our range of membership benefits, including
carefully selected discounts, but most
importantly to vote at our General Meetings.
You may even wish to run for the board! There
are 7 vacancies going at the Board, to be filled
by elections at the AGM.
We enter our annual sickle cell awareness
season with our traditional Service of
Remembrance and Thanksgiving on Sunday 6th
July, once again at All Souls Church, Harlesden,
London NW10. We look forward to news from
your neck of the woods, on any activity you wish
us to support you to organize during the
awareness months from July all the way to
September, after which we wrap up in October
with Black History Month.
Ps, do not hesitate to contact HQ
(info@sicklecellsociety.org) for further
information on the above, or indeed any query
or comment you may have for us as you
browse through this first issue of our revamped
News Review. The issue also features
information on the topical issue of Transcranial
Doppler (TCD) ultrasound. TCD is currently the
established technique to predict and therefore
help manage the risks of having a stroke in
young people. Your attention is drawn to a
number of consultation requests from the
Government and other agencies. We would,
also, be most grateful, for your feedback on a
number of surveys we are currently conducting,
to know how we could serve you even better,
as we forever strive to remain your voice of the
sickle cell community.
On the international scene, a conference was
held in Paris, on 15 March, by the European
Organisation on Rare Anaemias (EORA). The
Society is represented on this initiative by two
trustees- Dr Philip Nortey and John Mozie, the
vice chairman of our board. EORA aims to
empower patients across Europe by giving them
a much more effective voice through a forum
for patient groups and related pharmaceutical
organizations across Europe.
Finally, join me to congratulate our chairperson
on becoming Dr Lorna Bennett FRSA, following
her recent election to the Fellowship of the
prestigious Royal Society for the encouragement
of Arts, Manufacturers & Commerce. This award
recognizes achievement of eminence in their
chosen profession or calling, and who want to
see action to change society for the better.
Dr Asaah Nkohkwo FRSH
DIRECTOR OF THE SOCIETY
directors
message
Dr Philip Nortey (right) with EORA colleagues
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 3
SOCIETY NEWS
Novartis Oncology Ltd has for the past two
years given the Society two annual
educational scholarships of 2500 each to be
awarded to individuals with sickle cell disorder
who are pursuing courses to further their
education. Below are articles from three such
scholarship winners.
SALLY-ANN EPHSON
When I was a little girl, I always wanted to be a
nurse especially because I was growing up with
the chronic blood disorder sickle cell anaemia.
However, my late father thought nursing would
be too stressful for me. I had a nurses set, and
still dreamt about being a nurse some day. As
I grew up, I learnt a lot about my condition and
every time I visited hospital or was an inpatient,
patients (and even nurses) would listen to my
advice, some even thinking I was a nurse!
Sickle cell and thalassaemia had become my
passion. I would attend a lot of study days, and
speak about sickle cell to both the public and
professionals. However, I noticed the
professionals were not taking me seriously as I
did not have medical qualifications.
Sometimes I would have to debate with them
but still no qualification, no response. I then
decided to do something about this and study
a health related course at college. Due to
frequent illness and bad crises I was advised to
do a more flexible Open University course.
When I did the first course 'Understanding
Health' I was so happy and wondered why I
had not done something like this earlier!
When my Sickle Cell Society Regional Care
Advisor, Iyamide Thomas told me about their
annual Novartis scholarship award of 2500
each, I was a bit wary about applying.
Iyamide convinced me; I applied and just
wrote the truth. When I won I was completely
surprised! I just wished my late father was alive
to witness it. At first it did not quite sink in and I
kept saying it is the Sickle Cell Societys money!
I could not commence the course in 2007 as
I had a couple of bad crises which were
triggered by family bereavement. I spent eight
weeks in hospital and got very upset as I
thought I might lose the scholarship. However,
Iyamide assured me we could defer things until
my health improved. I have now deferred the
main HND in Health and Social Care course
until September. I have started doing some
foundational courses which I had also
mentioned in my scholarship application
including one called Starting with Psychology.
I am so grateful to the Sickle Cell Society for the
scholarship and words cannot express my
gratitude, I think it is a wonderful charity and
forever helpful. I will dedicate my degree to my
son and my late father. Once again Novartis
and Sickle Society: Thank You!
MARIE-CLAIRE MONKAM
I cant thank Novartis enough for giving me this
wonderful opportunity to pursue my dream. It is
more than words can express. Having been
through pain most of my life, I have always
wanted to pursue a career in the medical field
so that I can be able to play an important part
in the lives of those suffering from pain and
other medical conditions. I planned to apply
for a Pharmacy undergraduate program in the
university but was told I have to get into an
Access course since I wasnt science inclined,
didnt have the funds for all that and was very
depressed about it knowing that I would hardly
be able to raise the money for the fees. I
decided to get in touch with the Sickle Cell
Society and told them my worries. I was
advised to apply for the Novartis Scholarship
and was very excited when my application
was successful.
I am currently in the middle of my Access
course to be completed in June. From there, if
I get the grades of which I believe I will, Ill be
going to University to pursue my career in
Pharmacy or other pharmaceutical programs.
I would like to use this opportunity to thank
Novartis Oncology, the Sickle Cell Society and
all those who have been very supportive to me
especially Iyamide Thomas who relentlessly
encouraged me during a very crucial period
in the last year. I will also like to encourage all
those with Sickle Cell disorder not to let anything
come between their way of achieving their
dreams to have education or otherwise and
not letting sickness make you feel you cant do
it. We have a right to live a very normal life as
every other human being and when sickness
comes our way, lets tell it what I always do,
you will not win this time.
NEWS FROM DAVID SAMUEL, 2006
SCHOLARSHIP WINNER
I would like to thank Dr Lorna Bennett for
nominating me for the 2006 Novartis
Scholarship award which has really benefited
me in furthering my career in IT, and also for
referring me to the Barking, Dagenham and
Havering Support Group. The 2500 scholarship
award has been used for: Final year tuition,
laptop computer, Oracle Certified Associate
Computer-based Training CD, Oracle Certified
Professional Computer-based Training CD,
Exam Fees. The help from the Societys Novartis
Scholarship and that from the Barking,
Dagenham and Havering Sickle Cell Support
Group has really helped stabilize my life and I
hope these two organizations will continue to
assist not only me but others like myself.
WINNING
THE NOVARTIS
SCHOLARSHIP AWARD
Scholarship Winners for 07 / 08, Ms Sally-ann
Ephson (l) and Ms Marie-Claire Monkam (r)
pose with Nan Oliver of Novartis
SICKLE CELL SOCIETY | NEWS REVIEW 06 | SOCIETY NEWS
I am so grateful to the
Sickle Cell Society for
the scholarship and
words cannot express
my gratitude ...
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 4
SOCIETY NEWS | 07
FREE PRESCRIPTION
PETITION: THE
GOVERNMENT'S
RESPONSE
The on-line petition to the Prime Minister
(submitted by service user Doreen Gowie) for
free prescriptions for individuals with sickle cell
disorder closed on 16 April 2008. A total of 7026
people signed the petition! Here is the
Governments response which would have been
e-mailed to everyone who signed the petition:
Entitlement to free prescriptions is currently
based on the principle that those who can
afford to contribute should do so, while those
who are likely to have difficulty in paying should
be protected. For example, children under 16
and people aged 60 or more are entitled to
free NHS prescriptions. People with specified
medical conditions are also exempt from
prescription charges. The list of medical
conditions giving prescription charge exemption
was introduced in 1968 after being agreed in
discussion with the medical profession.
The Health Select Committee examined the
position of charges in the NHS in great depth
and made a number of recommendations.
The Department of Health responded on 17
October 2006 and agreed to review
prescription charges.
The Government has now carried out an
internal review of prescription charges and will
be inviting views shortly on options for change
that are cost neutral to the NHS.
The current exemption and charge remission
arrangements are intended to ensure that no
one need be deterred from obtaining any
necessary medication on financial grounds.
When the medical exemptions were
introduced, 58 per cent of NHS prescription
items attracted a charge. Now, fewer than 14
per cent of prescriptions dispensed in the
community in England attract a charge. As a
result, many people with medical conditions
not on the exempt list already get free
prescriptions on age or low income grounds.
People who have to pay can seek help under
the NHS Low Income Scheme, which provides
help with health costs on an income-related
basis. The level of help available is based on a
comparison between a person's income and
requirements at the time a claim is received, or
a charge was paid if a refund is claimed.
People who have to pay NHS prescription
charges and need many prescription items
could save money with a prescription
prepayment certificate (PPC). A three-monthly
PPC (costing 27.85) or an annual PPC (costing
102.50) will save people money if they need
more than four items in three months or 14
items in 12 months. To help spread the cost,
people can now pay for an annual PPC by ten
monthly direct debits.
More information about the extensive arrangements
for providing help with NHS prescription charges
and other health costs can be found in the leaflet
HC11: Help with health costs, which is available
from Job Centre Plus and NHS hospitals. Dentists,
opticians, pharmacists or doctors may also have
them. The leaflet and further information about help
with health costs can be found in the 'NHS costs
and exemptions' section of the Department of
Health's website at: www.dh.gov.uk.
HELP US HELP
OTHERS!
Thanks to funding received from this year s
Jeans for Genes appeal, the Sickle Cell
Society has launched a Regional Care
Volunteers Project (RCVP) covering London.
Through a network of trained volunteers this
project will provide home-help, hospital
visiting, respite care and befriending to
individuals and families affected by sickle cell
disorder. We are now recruiting volunteers for
the RCVP, so if you have the skills and
personality to help those of our clients who
might be feeling socially isolated, in need of
respite, a hospital visit or home help then
contact us! Volunteers will be reimbursed an
hourly rate of expenses. All volunteers will also
need to undergo a Criminal Records Bureau
(CRB) check.
For more information or to register your interest,
please contact Iyamide Thomas on 07841 558611
or e-mail iyamide.thomas@sicklecellsociety.org.
NEWS REVIEW | SICKLE CELL SOCIETY
THE SICKLE
CELL SOCIETY
Invites you to its
29th Annual General Meeting
on19th July 2008
VENUE
The Emmanuel Centre
Marsham Street, Westminster,
London SW1P 3DW
TIME
10.00am to 5.00pm
Come and support
The Sickle Cell Society
and have your say!
Free transportation is available for this event.
Delegates will be entered into
a FREE mystery prize draw.
For details on this event and others
coming up during 2008 Awareness
Season (July-October) look out for
our news releases or please contact
us on 020 8961 7795 or email
info@sicklecellcociety.org
Sponsored by an unrestricted community grant from
Novartis Oncology Ltd
JOIN THE
SICKLE CELL
SOCIETY
In a Service of
Remembrance &
Thanksgiving
VENUE
The Parish Church All Aouls
3 Station Road, Harlesden
DATE & TIME
Sunday 6th July 2008
3.00pm
For further details please contact us
on 020 8961 7795 or email
info@sicklecellcociety.org
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 5
SICKLE CELL SOCIETY | NEWS REVIEW 08 | SOCIETY NEWS
In summary - our membership and support
base did not engage as much as we would
have wished in this annual fun way of raising
money to support children and families
affected by genetic disorders.
This was disappointing especially because the
Sickle Cell Society was a Jeans for Genes guest
charity in 2007, with the sickle cell community
set to benefit directly via the Societys Regional
Care Volunteer Project that is being funded.
However, all was not doom and gloom and
there were several of our members, supporters
and friends who in one way or another
participated in the campaign. Our particular
thanks go to the following people who together
with their colleagues raised funds for the cause:
Hellen Appleby (Evelina Childrens Hospital),
Matty AsanteOwusu (Camden & Islington
SC&T Centre), Theodora Chamberlain
(Connexions) Esther Ifinnwa (Greenwich PCT),
Hannah Gyebi-Ababio, Lurieteen Miller
(Birmingham SC&T Centre), Dorrett Mothersill
(British Council), Dr Ade Olujohungbe (University
Hospital, Aintree), Olivia Olujohungbe
(Greenbank School, Cheshire), Yvonne Peart
(Brent PCT), Caroline Rowe (Islington PCT),
Andrea Weston, Donna Weyman (NCEPOD).
I would also like to thank the following media
or school volunteers:
Hellen and Simeon Adom, Ade Aluko, Dr Simon
Dyson, Sally-Ann Ephson, Pamela Gyebi-
Ababio, Gloria Hall, Esther Ifinnwa, Mohammed
Kabbay, Anthony Mason, Joyce Matthews,
Blanche McCalla, Annie and Miguel
McDonald, Stella, Jacqueline and Jennifer
Ochi, Dr Ade Olujohungbe, Kalpna Patel,
Cecilia Shoetan, Stephanie Sulaiman and
Beverley Telesford.
As a result of the Sickle Cell Society being a
guest charity in 2007, sickle cell awareness was
taken to new heights especially via the case
stories that were featured on the Jeans for
Genes website and school packs sent to
thousands of schools. This year s Jeans for
Genes Day is on Friday, 3 October. I do hope
many more of you will get involved in this fund-
raising campaign that is helping to conduct
research on genetic conditions and providing
support services for the many individuals and
families affected.
Please visit www.jeansforgenes.com for further
information.
Iyamide Thomas
REGIONAL CARE ADVISOR
JEANS FOR GENES
2007: IN SUMMARY
Iyamide with Jeans for Genes media
volunteers Ade, Pamela, Jacqueline
and Jennifer
Annie McDonald , a service user set to
benefit from the J4G volunteer project
and her son and carer Miguel
Staff at NCEPOD got denimised on
Jeans for Genes Day
Esther Ifinwa (Specialist Nurse Counsellor)
puts an ethnic slant to her jeans as she
gives a talk to Greenwich PCT colleagues
Volunteer Stella Ochi joins Society staff
Iyamide and Comfort in the 'denimised' fun
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 6
SOCIETY NEWS | 09 NEWS REVIEW | SICKLE CELL SOCIETY
The Society has now launched its sickle cell
training programme which will be aimed at
giving people the opportunity to obtain an
in-depth knowledge of sickle cell disease,
its effects and how to cope on a day to
day basis.
As part of the Societys continued effort to
address the needs of those living with sickle cell
disease, we have designed a specific training
programme, which consists of a 1 day training
course covering a range of subjects such as
What do I know about sickle cell disorders
(quiz), overview of sickle cell disease, chronic
disease management maintaining the
steady state in sickle cell disease, acute
management of sickle cell crisis plus more. This
course can be tailored specific to your
individual or organisations requirements. For
information on how to enrol on the course
please contact our office on 020 8961 7795..
Sickle cell disorder is the most common
inherited blood disorder in the country so we
need to make sure everyone in our community
is aware of how to treat and manage the
condition in order to understand and help
those who are affected by it.
CONGRATULATIONS
EXPAND YOUR
KNOWLEDGE WITH
THE SICKLE CELL
SOCIETYS TRAINING
PROGRAMME
To Professor Elizabeth N Anionwu CBE, FRCN, a
founder member of the Sickle Cell Society, for
becoming a grandmother! Granddaughter
Rhianne Elizabeth was safely born on 04/02/08.
Both mother and baby are doing well.
SICKLE CELL SOCIETY AWARDS
History, Criteria & Categories:
The Society traditionally recognises exemplary excellence, dedication, commitment
and achievements that are of inspirational nature with reference to the sickle cell
cause and hence publicly acknowledges these during our Annual General Meeting. In
particular, the following titles are presented at our general meeting:
I) The BLACK ON BLACK AWARD
Established thanks to our Patron, Trevor Phillips OBE, during his days as editor at the London
Weekend Television in the 1990s. The certificate recognises creative work by a person
personally suffering from sickle cell disease.
The award has two categories: adult and child.
II) The FLOELLA BENJAMIN AWARD
Established by another Patron, Dr Floella Benjamin OBE in the 1990s. The certificate is
presented to individuals or groups who have realised a significant achievement for Sickle Cell
i.e. by fundraising, or a personal achievement by a person(s) with a Sickle Cell Disorder.
III) OUTSTANDING PERSONALITY AWARD
This certificate is presented to a candidate chosen by the Chairperson of the Society in
recognition of the nominees outstanding contribution to the cause of the Society. It would
usually be presented to someone of community standing.
THE SUB-CATEGORY OF THIS LATTER AWARD INCLUDES THOSE
APPOINTED BY THE BOARD OF TRUSTEES TO THE RANKS OF
IV) PATRONS & PROFESSIONAL ADVISERS
These support the governance of the Society through the professional support they provide
to the Board of Trustees and the Executive Director (as Advisers) and other high profile
activities of the Society (as Patrons)
OTHER AWARDS INCLUDE:
V) The NOVARTIS SCHOLARSHIP
First awarded in 2006, this cash and certificate award seeks to recognise and encourage
excellence in academic endeavour by a person(s) suffering from sickle cell disease.
VI) OUTSTANDING ACHIEVEMENT AWARD
This certificate is awarded to either an individual or a group, and recognises achievement in
any field of relevance to the sickle cell cause, including fundraising.
VII) VOLUNTEER OF THE YEAR
This certificate is awarded to a candidate chosen by the staff of the Society, in recognition of
their contribution to alleviate the suffering of those living with sickle cell disease, or to the
administrative work of the Society.
VIII) STAFF MEMBER OF THE YEAR
The Chief Executive presents this certificate to the colleague s/he judges to have made
an exemplary impact on the efficiency and effectiveness of the Society, through team
work and documentation.
PUBLICITY, RECRUITMENT & DECISION PANEL
These awards are publicised through various channels, including: our newsletters, website and
letters to members and support groups in order to obtain nominations. The Selection Panel
usually meets in June ahead of the AGM and would comprise of members of relevance to the
respective awards as described above.
The decision of the panel is subject to ratification by the Board.
PRESENTATION
The formal presentation is made at the AGM, including a Citation Certificate
and possibly a trophy accompanied by a token cash award.
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 7
REGIONAL CARE UPDATE
This is a good opportunity to give my thoughts
and feedback about working in this region. I
am proud to say that 2007/8 has been a very
exciting year: more and more of you are
seeking information about the condition as
well as enquiring about services out there that
would benefit you. This has come about as a
result of the volume of phone calls I have
received, people from the black community
are feeling comfortable to talk about sickle
cell; and as more people particularly
those living with the condition as well as
families/parents with family members/children
who have the disease are becoming
increasingly educated and less stigmatised,
they are able to talk freely about the condition.
This is a great achievement on the part of
Regional Care Advisors outreach work through
its health promotion and educational talks,
raising awareness, and word is now filtering
through to the public and the community. I
have to say that all the RCAs are so committed
in the work they do and its great to see that
our hard work is now paying off.
I was very delighted when I received a
beautiful letter from Lesley, aged 10 from
Hackney. It was very kind and thoughtful of him
to do this; I read his letter over and over again;
my colleagues at work enjoyed reading it too.
Honestly, what is fantastic about this letter is the
amount of time he put in just to let me know
about his experiences, his sister and how much
he loved his mum for being there for him.
Please, read his letter on the Users Page. I hope
parents/carers would encourage their
children/young people to write on any topic
that interests them.
Good News! Barking & Dagenham, Havering
and Redbridge has a permanent Senior
Haemoglobinapathy Specialist Nurse now in
post; her name is Christine Williams, and she is
based at Cedar Centre at King George
Hospital. A warm welcome and congratulations
to you Christine! We wish her all the best for a
well deserved promotion. I am sure we will all
benefit from her exceptional clinical
knowledge and skills which have been
invaluable having worked with people living
with sickle cell disease for a long time.
October which is Black History month was
packed jammed with invitations from
schools/colleges, organisations and associations
for RCAs to attend various events to give talks or
display a stall on sickle cell. One such event
was at Petchey Academy (Hackney) where I
attended with Mrs C Dickson (Community
Development Officer -Hackney Sickle Cell and
Thalassaemia Centre). Some pupils have
relatives or know of friends living with sickle cell;
with others it was their first time hearing about
the disease as the class was mixed (black and
white pupils)
I was at the Black Police Association Event at
the Royal Festival Hall, Waterloo with a member
of the Sickle Cell Society and her daughter; we
displayed leaflets, posters and other literature
materials on sickle cell and the screening
programme. This is a very popular event within
the black community and it was well attended.
Some people were kind to make a donation
and many acknowledged the good work the
Society is doing in the community Keep up the
Good Work they said.
I was also involved in Jeans 4Genes Day,
October 5th. What a busy day that was! I
gave a talk at a Primar y School in
Westminster, one mum came along and
talked about her experiences with twin
daughters who have the condition. Later that
same day we rushed to Waterloo with
my colleague to shake the bucket What
a fun day; though I was a bit disappointed
that people were not ver y generous with
their donations.
I also attended the Black History Month at
Queens Theatre -Havering, with Cecilia
Shoetan (Coordinator Barking & Dagenham
and Havering Sickle Cell Support Group); we
had a stall, giving out information and talking to
people who attended the event.
A BIG THANK YOU to Rotary Club of Tottenham
& Wood Green members who gave their time
to fundraise for the Society. On a bitterly cold
evening in December, we knocked from door
to-door and people donated generously.
Sitting inside the beautifully decorated carriage
with all its glittering Christmas lights was Father
Christmas. We also had Christmas carols
blaring as we drove along the streets. It was
such a spectacular sight! My colleague,
Iyamide and I were privileged to be invited as
guests with other voluntary organisations to
attend the Rotary Club Dinner held in February
where we were presented with a cheque of the
money raised.
Comfort Ndive
Mobile: 07841 558 612
Email: comfort.ndive@sicklecellsociety.org
SUPPORT GROUP
NEWS
Waltham Forest Support Group has a co-
ordinator in post; her name is Juliette Otteng;
contact them at 471 High Road, Leyton
London E10 5EL; Tel: 0208 9881703. The
Centre now has a Saturday school for children
who suffer from Sickle Cell and Thalassaemia
and miss school due to frequent crises. Classes
LONDON NORTH
EAST REGION
Comfort Ndive
REGIONAL CARE ADVISOR - LONDON NORTH EAST
SICKLE CELL SOCIETY | NEWS REVIEW 10 | REGIONAL CARE UPDATE
Keep up the
good work ...
Black Police Association
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 8
run from 10.am to 1.00pm; Subjects: Maths
and English Key Stage 1-4; Ages 5-16.
In March 2008 Tower Hamlets Sickle Cell
Support Group held a workshop on Women in
Action (Promoting self-employment amongst
women in Tower Hamlets); I was invited to
attend as a Special Remembrance and
prayers for the soul of Ms Zainab whose sudden
death came as a shock to us. I would like to
take this opportunity to pay tribute to a
wonderful, kind devoted mother of four
children, and gracious lady. I appreciate the
fact that I was asked to say a few words about
Zainab, being a new member of the support
group. I met Zainab at Tower Hamlets Support
Group conference held at the end of August
last year. Initially, when you see her you would
not believe that she suffers with sickle cell, very
bubbly, always smiling, and generous, always
willing to share her experiences with others, and
raising awareness about the condition. I would
dearly miss her. Our heart felt condolences to
the family. May her soul Rest in Peace.
COMING SOON!
East London Sickle Cell Road Show for all
support groups in the region, sickle cell and
thalassaemia health professionals, voluntary
and community groups will take place on 6th
September 2008. So watch this space!
I am so happy to be doing this years first
South London update in this revamped,
new-look News Review. I hope our readers
like it? It will now be easy to differentiate
between one issue and the next, so no
more excuses!
In our last issue (Autumn 2007) I asked
whether the Society, through its Regional
Care Advisors Programme was having an
impact on service users health, and gave a
preview of a forthcoming Health Impact
Assessment (HIA) report that has evaluated
this programme. This report is now out. Hard
copies will be sent to all who participated in
the HIA workshops, but most importantly they
will also go to health service commissioners
as we tr y to secure the Regional Care
Advisors Programmes sustainability. We will
also post the report on our web-site. As
service users, providers or supporters, you
can help secure the Regional Care Advisor
(RCA) post in your area by lobbying your MP
and by completing the user / provider
satisfaction surveys we are conducting
(contact your local RCA for a sample lobby
letter and survey form). Only a concerted
effort by all will give sickle cell the resources
it needs!
ADULT SOCIAL CARE SERVICES
ARE CHANGING
Social care services (i.e. what workers do for
people who need support, e.g. home-help)
are changing and many local authorities now
only fund social care for those deemed to be
with critical need. This is having a direct
impact on the quality of life of people living
with sickle cell disorder who are very often not
assessed as having critical need. In
addition, service provision is moving towards
self-directed care and the new buzz words
are Individual Budgets and independent
living. Basically what this means is that
people in need of social care support are
being given more choice and control over
LONDON
SOUTH
REGION
REGIONAL CARE UPDATE | 11 NEWS REVIEW | SICKLE CELL SOCIETY
the way their care is delivered. Through Direct
Payments and Individual Budgets for
example, they will have financial control of
what social care services are purchased,
when and from whom, giving service users
greater flexibility. With sickle cell disorder
being such an episodic condition such
flexibility enables individuals to tailor their
social care support according to their
individual need rather than having pre-
arranged routine support. Local Authorities
are keen to promote this self-directed care,
so much that Lambeth Council is establishing
a new post of Director of Personalising
Services! In addition, London Councils
recently awarded grants to several
organizations to support advocacy schemes
and legal advice to promote take-up of
Direct Payments and benefit entitlements for
people with disabilities and carers. I am
pleased to say that the Sickle Cell Society was
one such organization and in the coming
months will be progressing this work.
Now for the more exciting stuff that has
been happening around my region:
PIPPAS RETIREMENT
On 21 December 2007, Pippa Gillham,
Specialist Nurse Counsellor at the South West
London Sickle Cell and Thalassaemia Service
officially retired. Pippa who set up the sickle
cell and thalassaemia service in Reading
worked there for ten years before joining
Wandsworth PCT. She has been a lovely
colleague to work with and this was reflected
in the speeches given by those present such
as Collis Rochester- Peart (Service Manager,
Iyamide Thomas
REGIONAL CARE ADVISOR - LONDON SOUTH
Stella Ochi and Comfort Ndive on Jeans
for Genes Day 2007
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 9
SICKLE CELL SOCIETY | NEWS REVIEW 12 | REGIONAL CARE UPDATE
SE London SC &T Centre), Stephanie Sulaiman
(Service Co-ordinator, SW London SC & T
Service), several service users and little me.
We wish Pippa best of luck in her retirement
and the good news is she will temporarily be
back at the SW London SC & T Service on a
part-time basis!
HO, HO, HO!
Yes, I was able to attend the Croydon Sickle
Cell Support Group Christmas party on 8
December last year, where on display were
pottery items the children had painted during
a summer workshop. I would like to thank Mr
Tunde Adenibi and Ms Louise Jeffreys for their
kind donations to three of my support groups
(Croydon, Greenwich, Lambeth) some of
which went towards buying the children
Christmas presents.
UPDATE FROM
YOUNG PEOPLES
EXPERT PATIENTS
PROGRAMME
(
EPP
)
Two Young Peoples EPP Trainers from my region,
Ade Aluko and William Kamara have finally
been able to conduct a series of young
peoples workshops! These were recently
commissioned by the Newham Sickle Cell and
Thalassaemia Centre and according to the
young trainers and feedback from EPP, the
workshops went very well. The Young EPP
workshops are designed to support young
people living with a long-term health condition
to increase their self confidence, better
manage their condition and improve their
quality of life. As a result of feedback from the
workshops in Newham, the EPP Young Peoples
training manual is being revised to include pain
management and hospital stays for young
people with sickle cell. The EPP was also
recently awarded a 3-year grant to further
extend the Young EPP and this will cover training
for new volunteers, and further workshops.
NHS SCREENING
DVD - COMING SOON
One very interesting piece of work I have been
doing in the last year is giving specialist advice
and collaborating with Woman-Being Concern,
an organization in South London which has
been commissioned by the NHS Screening
Programme to produce a drama on DVD. This
drama will help raise awareness of screening
for sickle cell as well as some of the issues and
myths surrounding the condition. It is targeted
mainly (but not exclusively) at the West African
community in whom the gene for sickle cell is
most prevalent. The script for the drama has
been finalized and auditions for the cast have
taken place. I have no doubt that when the
Family Legacy is released (in the autumn) it will
be this years Nollywood best-seller!
IS THIS THE NEXT
RICHARD BRANSON?
Could Emmanuel Wilkey (above) be the next
Richard Branson? A while back I helped
Emmanuel source funds for a portable
massage bed so he could set up a massage
business. Well, Emmanuel is now also a trained
driving instructor and is setting up his own
driving school! Emmanuel has sickle cell
anaemia and is sometimes hospitalized, so
running his own businesses gives him the
flexibility he needs. Emmanuel has pledged to
be more sympathetic towards any students
with sickle cell if they have to postpone lessons
because of crises or hospitalization. This
budding entrepreneur is showing that with sickle
cell disorder you can still strive to reach your full
economic and social potential, and the Sickle
Cell Society is behind him all the way!
Emmanuel Wilkey
Mobile: 07960 717 665 or 0800 118 2920
www.emanualsdrivingschool.co.uk
RAISING AWARENESS
OF SICKLE CELL
DISORDER
As Regional Care Advisors, raising awareness of
sickle cell disorder, the screening programme
and the work of the Society is embodied in the
outreach work that we do. I recently participated
Croydon Sickle Cell & Thalassaemia
Support Group Xmas Party '07
L-R: Marilyn Husbands (Administrator),
Corral Rose (Specialist Nurse Counsellor),
Pippa Gillham and Stephanie Sulaiman
Young Trainers- William Kamara and Ade
Aluko
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 10
in two health fairs at a college in South London.
Many students came to my stall, some had
relatives with sickle cell disorder and two had the
condition themselves. I gave out a lot of literature
and was able to recruit potential volunteers for
our Regional Care Volunteers Project. Many
listened attentively as I talked about the genetic
nature of sickle cell and the need for pre-
conception screening. A group of young men
asked many pertinent questions and hopefully
left empowered to make informed choices.
However, things are not always cut and dried; at
the first fair, one young man had retorted my
blood is clean and at the second another had
joked my immune system is hard-core. As you
can see the Societys Regional Care Advisors still
have their work cut out for them!
Iyamide Thomas
Mobile: 07841 558 611
Email: iyamide.thomas@sicklecellsociety.org
Since the last newsletter edition, I have
had the opportunity to meet and work with
many service users and service providers
alike within my region and it has been a
great pleasure.
I am being kept ver y busy since starting in
May, with the support and advocacy work I
have been involved with. My biggest
challenges have come with the service users
needing assistance with housing needs and
disability living allowance applications. Since
the last newsletter I have worked on 10
Disability Living Allowance applications with 4
successful outcomes to date, with four still
pending a decision, and 2 in which I have
worked on remotely.
With the many activities that the Society has
worked on over the last few months, I have had
my fingers in every pot, helping to write the
Radio 4 appeal script, shaking a bucket at
Paddington station with Kalpna for Jeans for
Genes Campaign and now working on setting
up the volunteer project we received funding
for, and supporting Kalpna on the London
Councils funding bid.
I have probably met some of you whilst doing
talks and conducting health information stalls,
and I would like to extend many thanks for all
the invitations that I received, keep them
coming, these events brings awareness and
much needed advice to individuals and
groups who if it wasnt for these types of
events would continue to walk around in a
state of ignorance with regards to the issues
surrounding sickle cell.
Since November I have taken over the
administration duties of the Ralma Faulkner
Welfare Fund and The Br yan Jones
Educational Fund from Miriam, which has kept
me on my toes. If any one has any enquiries,
LONDON
NORTH
WEST
REGION
REGIONAL CARE UPDATE | 13 NEWS REVIEW | SICKLE CELL SOCIETY
or would like to apply for one of these funds
they can contact me and I would be happy
to answer any questions or send them out an
application form.
Unfortunately this years Christmas present
appeal was not very successful, and in our
region only a small selection of gifts were
donated. However, we are thankful for
everything that was received and we
especially extend a big thank you to Brent
Active Citizens Project for their support with this
appeal, the presents were distributed
accordingly and we are hoping to have better
luck this year.
We still have the whole year ahead of us
including our awareness season, the AGM,
Church service and Black History month. I am
always looking for volunteers, to further my
reach within the Northwest London region, your
skills what ever they are, are always
appreciated.
I would like to finish by extending heart felt best
wishes to Mrs Falconer who celebrated her 75th
Birthday, earlier this year.
Dinah Walker
COMMUNITY SUPPORT OFFICER
Dinah Walker
COMMUNITY SUPPORT OFFICER
I have my
fingers in
every pot...
COMING SOON
ON CD / DVD
FEEL MY PAIN
THE NEW SONG THAT WILL
RAISE AWARENESS OF
SICKLE CELL DISORDER
When 29 year old Adebisi Aluko (also
known as the artist A.D.E- Africans Did
Entertain) asked his employer if he could
go home because he was having a
sickle cell crisis, the response was that if
he did so he should not bother coming
back. Like so many, Ades employer was
unaware of the effects of sickle cell
disorder or the painful crises he
experienced. Despite his pain Ade
stayed at his desk, put pen to paper and
wrote the following: only God can feel
my pain, wondering why Im so afraid,
that this pain may take me away to a
place I rather not say. Thus began the
lyrics to Feel my Pain, a song Ade hopes
will help raise public and professional
awareness about sickle cell disorder.
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 11
I consider it a pleasure to be able to present my
quarterly update, snapshot of activities from the
North West region Manchester /Liverpool, high
lighting another area of the national profile of
the Society. It has been a very productive
period, although filled with challenges however
still proving to be immensely rewarding. Being
part of a team who advocate on behalf of
service users cannot be summarized by words.
I have watched the Parents Power Group (this is
a prong of the Support Group) grow and go from
strength to strength, Facilitated by Carol Douglas
centre counsellor which is led by Mrs Busola and
the team. I must commend them for their vigour,
motivation and their vision as a group. The group
has been facilitated and stimulated by Carol
Douglas, one of the centres Counsellors. Within
this recent period, the group have been on a trip
to Camelot Theme Park and Chester Zoo which
went very well and the attendance support was
positively remarkable. The children enjoyed the
day immensely from the transit to the adventure
theme park, they expressed delight of spending
the day going on rides, playing on games and
not forgetting the taste of candy floss, sweets,
hotdogs and burgers. In essence they and their
parents/carers basically absorbed the entire
atmosphere of the day, everyone letting their hair
down forgetting about the issues surrounding
sickle cell and the uncertainty of their health and
the future if only for the day, simply bonding
together leaving an unforgettable pleasurable
experience in their mind.
The Manchester Sickle Cell Support Group held
their AGM on the 10.12.2007. This timely
meeting saw the changing of post in terms of
chairmanship. The mantle was passed on from
Liz Aniteye who had capably carried and kept
alight the torch of the presence of the Support
Group in the community. More recently,
Elizabeth and the team had made great
strides in working with the PCT to see the reality
of a Community Link Worker manifesting into
the reality of a post. This vision birthed by
Elizabeth is now in the horizons of being a
tangible post.
Mr Hartley Hanley takes up the mantle as being
the Chair. He is wished every success as he is
insatiably optimistic for the future. The Patron
remains as Dr Ade Olujohungbe; Yvonne
MacCarthy continues her role as the treasurer,
both who are committed members of the group.
It is always saddening when one loses a loved
one. That said, given the permission by the
family, I must make mention of the loss of a dear
client of mine Miss Maxine Minott. I commend
her memory as one who was a fighter who with
the short time on this earth faced up to many
obstacles in life. She courageously braced
through them the best way she knew how. As
one who lives with the condition, I recognised
that at times she was poorly understood yet up
and above all, Maxine loved to smile through
circumstances. She had a memorable
character and quite often tested the system at
times. In all that, she with veteran tenacity
pressed through life even after suffering a major
stroke in her mid teens. Maxine passed away on
the 18th November 2007 at 27 years of age
after suffering yet another stroke which then
ensued an array of other complications.
THE LATE
MAXINE MINOTT
Maxine left behind a daughter Leah aged 8
whom she dearly loved, mother Linda, father, a
brother and four sisters as well as a loving
extended family not to mention a multitude of
friends and boyfriend Daniel. I am grateful that
I was afforded the opportunity to be able to
support Maxine partly through her lifes journey.
It can be honestly said that Maxine made an
indelible mark on the memories of many and
will not be forgotten.
Clients like Maxine keeps ones appetite for the
job on fire, I believe that it is pertinent to say at
this point that our BME communities need to
increase the uptake of giving blood in order to
help our service users in the event of much
needed transfusions and/or operations. This
need is not only for those with sickle cell but
also for the wider community. Factual data
dictates that BME blood has certain antibodies
in it that when it comes to cross matching for
transfusion, the closer the match the better one
is able to significantly reduce complications.
MANCHESTER &
LIVERPOOL REGION
SICKLE CELL SOCIETY | NEWS REVIEW 14 | REGIONAL CARE UPDATE
Anthony Mason
REGIONAL CARE ADVISOR
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 12
HEALTH CENTRE
IN LIVERPOOL
The centre for Inherited Blood Disorders
Abercromby Health Centre in Liverpool was
proud to be launching its first website on Sickle
Cell Disorders on 28th March 2008. The event
was hosted by Dorothy Zac-Williams and her
team from the Sickle Cell and Thalassaemia
Centre in Abercomby Liverpool. The website is
informative with a target audience of both
service users and professionals. There was a
significant attendance to the launch and the
opening remarks were given by Lord Aaron
Ward Atherton of Witley & Hurcott.
This initiative was supported by funding from the
Community Chest Fund [PCT], Robert Gregory
Chair from The Alkaptonuria Society, Anthony
Mason [The Sickle Cell Society] and the tireless
work of service users and PCT staff.
For more information please logon to
www.ibdcabercromby.co.uk
Manchester/Liverpool
Tel: 07841 558 610
Email: anthony.mason@sicklecellsociety.org
My name is Airende Collins and I am 23 years
old from Edo State, Nigeria. I have three
siblings and I am the first child. My younger
brother is in the Defense Academy while my
immediate younger sister is in the University of
Benin. The youngest is in high school. As for
me, I have a Diploma in Information System
Management and also an Advanced
Diploma in Telecommunications Systems from
City and Guilds London via correspondence.
Presently, I develop web applications and
have just got admission to study medicine at
the University of Benin.
I am living with sickle cell anaemia (HbSS) and I
have an NGO. The name of the NGO is Rare
Gem Initiative. The organization is dedicated
towards improving the lives of people living with
sickle cell, people who like me are Rare Gems.
The Rare Gem concept is a deliberate attempt
to eradicate stigmatization that people living with
sickle cell usually experience. Growing up for me
was hell. I was always in and out of hospital. I was
treated badly at school. I was called a lot of
names. Some would call me "curry eyes"
because my eyes were always yellow. I was also
called "how bodi" because I was never in school
and when I got back thats what I would hear
from everybody. At home, my dad blamed my
mother that she gave me sickle cell as nobody
had sickle cell in his family. Its not like he is
illiterate, after all he is a lawyer! However, he was
ignorant. On the other hand, my mum said I was
evil and that I was sent to drain her finances
because my crises would always come when
she collected her salary. It was so bad that I
always kept to myself and was never allowed to
play with my friends. My mum said I was not a
normal child. I was also told I would die at 21 and
so I grew up in fear. Several other Rare Gems call
and tell me similar stories. I am writing a book
called "Doctors Lied to me" where I will describe
more Rare Gem experiences.
The unpredictability of a painful crisis is a major
source of distress and usually presents
psychological symptoms which include
THE RARE
GEMS OF
NIGERIA
SERVICE USER NEWS | 15 NEWS REVIEW | SICKLE CELL SOCIETY
depression and anxiety and leaves us Rare
Gems demoralized and helpless. The Sickle Cell
Foundation here in Nigeria has done quite a lot
but they cannot or have not been able to meet
the social and psychological needs of Rare
Gems, which is why I started my network. I have
been able to touch many lives because people
feel so happy to talk to someone that feels the
same pain they feel. I have come this far
because I have developed a positive attitude
towards myself and thats the first step anyone
who wants to overcome this struggle has to take.
I am a Christian and I believe in miracles, but
the greatest form of healing is when ones mind
is healed and that is why I am doing all that I am
doing. We have stopped using the name
sickler and instead call ourselves Rare Gems.
We just concluded a survey on sickle cell
patients and we discovered that most people
living with sickle cell do not feel comfortable
when addressed as sicklers. The origin of the
name sickler bothers me a lot. Where did it
come from? Was it just a harmless word from a
lazy doctor that needed something cute to call
his patients or was it from somewhere else? I am
sure a Rare Gem did not come up with the word
sickler but rather it was a gift given to us from
people who had no need or desire to see that
we felt good about ourselves or empowered in
anyway. I am sure you will agree with me that
language can discriminate and language can
hurt. Language enslaves ones spirit. When we
pass down useless language such as the use of
sickler to describe people living with sickle cell,
we do very little to inspire growth or change.
Degrading an HbSS individuals dignity holds
back his/her spirit to overcome the challenges
of the disorder. For this reason, I have refused to
be called a sickler. I would prefer to be
addressed as a Rare Gem. Rare Gem in the
Robert Gregory Chair of the Alkaptonuria
Society and Dorothy - Zack-Williams Centre
Manager of the Sickle Cell and
Thalassaemia Centre Abercromby Liverpool
SERVICE USER NEWS
Airende Collins
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 13
Kelsey Lecky - 10yrs
sense that the condition is relatively rare (I have
three siblings and I am the only one who has
sickle cell). It would also not be out of place to
describe us as Gems as most Rare Gems are
quite intelligent but are usually limited by the
varied clinical manifestation of the disorder.
I hear sickler the most when I am in pain in an
Emergency Room where a doctor is trying to get
a line connected. I usually feel grateful that I am
getting this care. My spirit starts to fight for my life,
to breathe another breath and there goes this
word whispered or just shared over my body, for
example:
Dr Adebayo: What is the problem?
Dr Clerk: We could not get a line in, he is a
sickler. He just came in a few hours ago, just
another sickle cell episode with complaints of
chest pain.
Me: In pain and with the two doctors hovering
above me, I think is that what I am, a sickler?
Why was I even born, why was I born this way?
Im tired, very tired. Its just not right to take away
someone's identity and replace it with
something else at your leisure, just because its
convenient. Just think how encouraging it would
be to hear:
Dr Adebayo: What is the problem?
Dr Clerk: We could not get a line in. His name
is Collins. He just came in a few minutes ago,
vaso-occlusive crisis with some chest pain.
Dr Adebayo: Hey Collins, long time no see, you
must have been doing very well. Have you
designed any new websites? Dont worry we will
get you out of here very soon.
Me: In pain and with the two doctors hovering
above me, I think she remembers my name? It
feels good to be remembered. Yeah, I cant
wait to get back home and finish that website.
Isnt language POWERFUL! Not only was I not
called a sickler the second time but my pain
was called a crisis. A good friend pointed out
to me that she has pain episodes at home and
she can manage episodes. Crisis is when she is
forced to go into the hospital to seek help. That
is the power of language, if you change the
language you can also help change the
environment in which care is given which gives
us Rare Gems a better chance at winning in our
struggle over our pain.
Airende Collins
Email: negtag4real@yahoo.com
SICKLE CELL SOCIETY | NEWS REVIEW 16 | SERVICE USER NEWS
KELSEY
LECKY
LETTER
she has
suffered for
me and
my sister...
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 14
SERVICE PROVIDER NEWS | 17 NEWS REVIEW | SICKLE CELL SOCIETY
Local MP Clare Short (Birmingham Ladywood)
joined staff and patients at Birmingham
Acute Sickle Cell and Thalassaemia Centre
on Friday 7th December 2007. Ms Short met
staff and patients to hear first hand about
living with the diseases and had a chance to
find out more about both the diseases and
the importance of being tested.
Sickle cell is one of the most commonly
inherited genetic diseases in England
around 12,500 people have the disease and
there are an estimated 240,000 carriers.
Around 700 people are affected by
thalassaemia major with an estimated
214,000 carriers.
MS SHORT SAID:
I was delighted to come and meet the team
and patients at the Centre. Its great to know
there are so many dedicated people
involved in the care of people affected by
these diseases. Despite their efforts,
awareness of sickle cell and thalassaemia is
still low. It s important to be tested for the
diseases before you start thinking about
having children. Its just a simple blood test,
but the results could help you plan for your
familys future.
Dr Allison Streetly, Programme Director for the
Sickle Cell and Thalassaemia Screening
Programme comments:
We have come a long way since the
Programme was started in 2001. Newborn
screening for sickle cell is now offered to all
babies born in England and we are well on our
way to offering antenatal screening to all
pregnant women in England too. This is a huge
achievement by the NHS and its staff but there
is still much to be done to increase awareness
and improve understanding of the diseases.
Sickle cell and thalassaemia largely affect
black and minority ethnic groups, but
because they are genetic, they can in fact,
affect anyone. England is now a diverse and
culturally ver y rich society, and so the
susceptibility of a person to have these
diseases is more difficult to predict.
Ever yone needs to consider screening for
these diseases.
SICKLE CELL
WHAT YOU NEED TO KNOW...
FACT
Sickle cell and thalassaemia are serious
inherited blood diseases
FACT
All pregnant women in England should
ideally be offered screening by 8-10
weeks in pregnancy. Ask your GP or
midwife for details
FACT
If you carry the gene of sickle cell or
thalassaemia you will be healthy, but you
could pass the disorder to your baby
FACT
Screening is important for men too. Babies
inherit the diseases from both their fathers
and mothers
ANTENATAL &
NEWBORN SCREENING
PROGRAMMES
SERVICE PROVIDER NEWS
Clare Short MP (centre) with patients from the Centre
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 15
SICKLE CELL SOCIETY | NEWS REVIEW 18 | SERVICE PROVIDER NEWS
The Sickle Cell Society is continuing to be active
in its support for social research looking at the
educational needs and experiences of young
people with sickle cell disorders. The study is
being led by Simon Dyson at De Montfort
University, Leicester. The Sickle Cell Society,
together with other sickle cell organizations, is
represented on the Advisory Group for this
project. The project is funded by the
governments Economic and Social Research
Council, which funds public research in
disciplines such as sociology and social policy.
By the beginning of 2008 we had collected
questionnaires from 250 young people (aged 5-
25 years old) with a sickle cell disorder. The results
so far suggest that young people living with a
sickle cell disorder are faced with considerable
challenges in working their way through school.
For example, the children with sickle cell told us
that they missed an average of 17 days of
school a year because of illness associated with
their sickle cell. But this was the average. In a few
cases this number was much higher, and in one
case the young person said that they had
missed 200 days of school, in other words most
of the school year. However, the most frequently
reported period of time absent from school for
each absence was two days. It seems that a
great deal of school can be missed, but that if
the time off is in a series of short absences, then
any support systems may not be triggered
before the child is back at school.
The young people were also asked to comment
on how much they felt they were helped to
catch up, placing themselves somewhere
between 0% (not helped to catch up at all)
through to 100% (helped to catch up
completely). As Table 1 shows, only a small
minority, around five percent thought they had
been helped to catch up completely. Ninety-five
percent therefore thought they had not been
helped to fully catch up. Most worryingly, around
20% thought they had not been helped to catch
up lessons they had missed at all.
EDUCATION AND YOUNG PEOPLE
WITH SICKLE CELL DISORDERS
(SCD): UPDATE JANUARY 2008
We then asked children what their experiences
had been with regard to other issues at school.
Anyone who has worked in the area of sickle cell
will have heard stories of children not being
allowed to take drinks in class (important for
keeping hydration up and preventing crises); of
not being allowed to go to the toilet (children with
sickle cell cannot concentrate urine readily so
need to pass urine more frequently); of being
made to do unsuitable exercise (cross-country
runs in the cold rain could precipitate a crisis),
and being labelled lazy (when actually tired
from the anaemia). But what we have not had
evidence about before is how typical and
widespread these experiences are.
Another major area we asked about was what
factors if any had triggered a sickle cell crisis when
at school. Again the responses suggest that bad
experiences are common to many young
people and are by no means the exception.
The next stage of the research is to interview
50 young people with sickle cell about their
life at school. We are especially interested in
what young people think are the advantages
and disadvantages of telling the school that
they have sickle cell.
The final stage of the research is to try to influence
policy on what goes on in schools. During 2009,
we aim to hold a series of regional workshops in
different parts of the country, to which all known
participants in the research would be invited.
National and local self-help groups, sickle cell
specialist counsellors, teachers and local
education authority advisors would also be
invited. Such seminars would (i) share the results
of the research, and (ii) through workshops enable
parents and children to tell us what should be in
an education policy for people with SCD.
Dr Simon Dyson
Table 1: When lessons missed how much are children with sickle cell helped to catch up?
How much have you been helped to catch
up lessons missed on a scale of 0 to 100
Not helped to catch up at all
Helped to catch up about 25% of the way
Helped to catch up about 50% of the way
Helped to catch up about 75% of the way
Helped to catch up all the way (100%)
Numbers and percentages of children with
sickle cell disorder saying this
45 (20%)
77(34%)
61(27%)
30(13%)
12(5%)
Table 3: What do children with sickle cell say starts a painful crisis at school?
Reported Trigger for a Sickle Cell Crisis
School was too hot or too cold
Being upset by a teacher
Being upset by a pupil
The school furniture
Percentage of children with sickle cell
disorder saying this had happened to them
51%
37%
30%
24%
Table 2: How do children with sickle cell say they are treated at school?
Reported Experience at School
Prevented from taking a drink in class
Prevented from going to the toilet
Made to do exercise that was unsuitable
Called lazy when feeling tired
Percentage of children with sickle cell
disorder saying this had happened to them
58%
47%
38%
35%
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 16
A good practice guide for health professionals
and their partners on transition planning for
young people with complex health needs or a
disability.
In March, Ivan Lewis, Care Services Minister
announced the publication of good practice
guidance for health professionals and their
partners on the transition planning for young
people moving into adulthood.
Transition from childrens to adult health services
is recognised as an important issue. More
children are now surviving into adult life with
conditions which once would have been fatal in
early childhood. Many of these conditions will be
unfamiliar to health professionals working in adult
services and often the young person needs care
from a number of different specialities. The
coordination of care which they have received
in childrens services all too often fades away
when they transfer to adult care. Young people
with a neuro-disability such as cerebral palsy or
muscular dystrophy are the least well served
when the time comes to move on to adult care.
The Department of Health and Department for
Children, Schools and Families have now
published a good practice guide for health
professionals and their partners. The guide will
TRANSITION:
MOVING ON WELL
SERVICE PROVIDER NEWS | 19 NEWS REVIEW | SICKLE CELL SOCIETY
help ensure that the young person and their
family are better prepared for the move to
adult care and that the adult care team has
been involved in planning for the transfer.
IVAN LEWIS, CARE SERVICES
MINISTER, SAID:
Young people and their families tell us of the
uncertainty they face about their future support
when they reach 18 years of age. All too often,
they feel unsupported which is why we have
made improving the transition experience of
young people a Government priority.
Health and social care professionals have an
important role in working with other agencies to
support young people with the most complex
health needs through the transition period. This
good practice guide offers suggestions on how
this can be done.
ANDREW ADONIS, SCHOOLS
MINISTER SAID:
Transition is recognised as an area for
improvement in Aiming high for disabled
children and we are investing 19m over the
[next] CSR period to initiate and develop a
transition support programme. This good
practice guide for health professionals will be
an important contribution to that programme.
The guide can be accessed via:
www.everychildmatters.gov.uk/_files/
TransitionGuide.pdf
Young people and
their families tell us of
the uncertainty they face
about their future support
when they reach 18 years
of age ...
SICKLE CELL PATIENT
CONFERENCE AT
MANCHESTER
ROYAL INFIRMARY
Adults and children with sickle cell disease were
invited along with friends and families to attend
a patient conference on September 29th
2007. The aim of the conference was 2 fold.
1. Provision of a forum in which patients and
their families could participate in decision
making. (DOH Choices matters, 2007-08,
putting patients in control)
2. A platform to inform patients of the latest
developments for sickle cell disease and
the opportunity for patients and their
families to ask the professionals questions in
a less formal setting than hospital or clinic.
The conference was a huge success with 96%
of participants requesting another conference
next year.
Kath Stevenson
SPECIALIST NURSE - MANCHESTER ROYAL INFIRMARY
Guest speakers came from London,
Liverpool and Manchester.
Topics included blood safety issues, stroke
in sickle disease and prevention/
detection with the aid of Doppler scanning,
mens issues, transition to adult services and
the introduction of the PISCES study
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 17
(Transcranial Doppler or TCD scan is
increasingly recommended for stroke
prevention, and so we invited the team at
Tommys to give us a low down. Incidentally,
the Sickle Cell & Young Stroke Survivors Support
Group (www.scyss.org) on Old Kent Road,
London, offers support for children who have
suffered a stroke)
Stroke is one of the most devastating
complications in sickle cell disease (1, 2).
Stroke is defined as an acute neurological
event in the presence of a correlating brain
lesion as shown on MRI, CT or other imaging
studies. This commonly presents with the loss
or reduction in function of limb or sensor y
organs like vision. Once this occurs, full
recover y of function and skills may be
compromised. Patients are therefore left with
long term consequences such as
educational and behavioural impairments,
and limitations in daily self help skills (2).
Known risk factors for overt stroke include
increased frequency of acute chest
syndrome (such as pneumonia), high blood
pressure and abnormal Transcranial Doppler
(TCD) results (1, 5-7). In sickle cell disease
stroke tends to recur, and in the absence of a
strict blood transfusion programme, up to 6
out of 10 patients will have a further stroke
within 24 months of the first event. The use of
blood transfusion is beneficial in reducing the
risk of stroke recurrence however this occurs in
the background of existing damage.
Children with sickle cell anaemia are
reported to be almost 300 times more
likely to develop a stroke when compared
to non sickle cell children (6, 7). This is
due to a combination of factors such as
chronic anaemia,
The need to identify children who would benefit
from blood transfusion led to the multi-centre
study of 1, 934 children with sickle cell anaemia
in the US (STOP trial reference). This study
selected children with an abnormal TCD scan.
Transcranial Doppler ultrasound uses painless
ultrasound to detect abnormal increases in
blood velocity in the blood vessels of the brain.
The TCD technique is completely non-invasive,
does not involve any injections or radiation and
is therefore an ideal surveillance tool. To prevent
stroke, transfusion proved to be so effective that
the study was halted 16 months earlier than
planned. In September 1997 the National
Institute of Health, alerted doctors in the USA that
the approach used in the STOP trial (as it was
called) was effective in stroke prevention and
should be offered to sickle cell anaemia
patients. The benefit of this programme has
been validated in follow up community studies
in California and elsewhere (refs).
DISCUSSION
The application of this recommendation is
gradually being introduced in major sickle cell
treatment centres in the USA and is now
available in the UK. Increasingly over the last 4
years it is becoming standard care in the UK and
recent reports have shown that the rate of
abnormal studies may be about 5% in
unselected children with sickle cell anaemia. As
the service becomes established over the years
the finding of abnormal studies will fall but
nevertheless screening will be critical to patient
management. The recommendation from the
original group was to undertake the studies in
children from 2 to 16 years and to offer this every
6 to 9 months, even though annual studies tend
to be the pattern in most centres. Our practice
has been in line with this recommendation since
2003. A number of questions arise to ensure that
the results obtained in accordance with the
original study and are undertaken in a safe,
reliable and reproducible manner. Centres
which intend to start screening children with
sickle cell disease for stroke risk should ensure
that their TCD equipment and protocols
compare with those used in the STOP trial.
The decision to commence a child on chronic
blood transfusion therapy cannot be taken
lightly and should be made only after careful
consideration of the risks and benefits. The
parent / carer should be involved in the
management decision and this should be led
by a clinician who specializes in the care of
children with sickle cell disease. The clinician
should have knowledge of the STOP trial
protocol, its results, and be experienced in the
safe delivery of blood products and the
management of transfusion complications. A
number of cautions must be considered:
1. Early closure of the STOP trial limits the data
available on long-term risks and benefits in
the two groups.
2. Future TCD screening must be comparable
to STOP trial TCD equipment and protocols.
3. Transfusion decision should be made in
consultation with a physician experienced
in transfusions in children with sickle cell
disease and management of iron overload.
Common questions facing patients and their
families are the duration of transfusion, the
risk of transfusion reactions and the overall
benefit for the child. There is yet no clear
indication as to the optimum duration for
blood transfusion. The second STOP study
which tried to clarify this point found that
even those where TCD had normalised
reverted to high risk when the transfusion was
stopped (reference). It is nonetheless
believed that the risk may reduce as the
children become adults. There is no clear
recommendation on how long transfusion
should be given. The risk of iron overload is
one of the most common complications
PRIMARY STROKE
PREVENTION IN
SICKLE CELL DISEASE
Figure 2: Transcranial Doppler imaging
probe in use
SICKLE CELL SOCIETY | NEWS REVIEW 20 | RESEARCH NEWS
RESEARCH NEWS
BABA INUSA AND SOUNDRIE PADAYACHEE GUYS AND ST THOMAS NHS FOUNDATION TRUST
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 18
after approximately a year on transfusion.
This occurs more so in children who receive
simple top up transfusions rather than
exchange blood transfusion, because the
system is not able to get rid of the excess iron
acquired from the additional blood
transfusion. This keeps accumulating until
medication is administered that is capable
of removing this excess through urine or stool.
A number of issues must be addressed in the
application of this recommendation. This is
the basis of the development of current
standards by the National Screening
Committee of which the Society and the UK
Forum on Haemoglobin Disorders are well
represented. These issues include the
standard of care for those children identified
through the programme, patient monitoring
and patient education. The priority to offer a
service that meets the standard of practice
as recommended maintains patient s
confidence and offers the child the best
outcome. A number of issues will continue to
be addressed such as patient compliance
with screening, treatment and care of the
complications of blood transfusion such as
iron chelation therapy and possible
transfusion reactions. The overall objective is
to reduce the risk of primar y stroke and
thereby enhance patient quality of life.
RESEARCH NEWS | 21 NEWS REVIEW | SICKLE CELL SOCIETY
Figure 1: TCD recordings:
Top trace: NORMAL - ICA & MCA mean velocity <150cm/s, low risk of stroke (<2%), repeat scan
annually.
Middle trace: CONDITIONAL - ICA or MCA mean velocity 150-179cm/s, intermediate risk of stroke
(7%), repeat scan in 12 weeks.
Lower trace: ABNORMAL - ICA or MCA mean velocity >180cm/s, high risk of stroke (10%), repeat
scan in 2 wks unless >200cm/s. Two abnormal studies or one >200cm/s - patient
eligible for treatment
Figure 3: Transcranial Doppler image of the
basal cerebral arteries.
NEWS FROM
THE SCAD PROJECT
Work stopped in April 2007 - the grant had
been completely spent. We had managed
to overcome the technical problems to make
the SCAD camera work as well as possible
and by that day had examined six patients
at Central Middlesex Hospital. To our surprise
the camera detected almost no sickled cells.
The reasons for this could be:
1. Only certain patients have a large enough
proportion of sickled cells to be readily
detectable.
2. The camera is not sensitive enough,
although it has the sensitivity necessar y
using other peoples work as a guideline.
3. We have discovered something unusual
about the state of patients blood between
painful crises in the diseases progress.
Since then we have been considering how to
redesign the camera and the University of
Nottingham is preparing proposals for two
research projects. If the university gets the
money then new cameras will be built for
research into: Sickle Cell Disease, Diabetes,
diseases of the eye and sepsis in children (a
complication when they are very seriously ill).
We could not reapply to the Big Lotter y
specifically to help patients with Sickle Cell
Disease until ver y recently because the
Lotter ys Fund for Research stopped during
2007 only to be restarted last December.
Dr Martin Pickstone
PROJECT SCIENTIST
EDITORS NOTES:
The report may at first seem disappointing,
but we have proved a couple of important
points apart from the above. Most
importantly, we have proved that medical
research can truly be driven by and for
patients interest. Moreover, lessons from the
complex collaboration involving a patient
organisation, the university and hospitals
suggests that the SCAD research is a unique
tripartite that should serve for best practice
example in the future of responsive public
health reforms.
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 19
SICKLE CELL SOCIETY | NEWS REVIEW 22 | RESEARCH NEWS
WE NEED A NATIONAL REGISTER
FOR HAEMOGLOBIN DISORDERS
BONE MARROW
TRANSPLANT
The history of comprehensive data collection
in the UK for Haemoglobin disorders goes
back many years. However despite the best
efforts of many enthusiastic and committed
individuals we still in the beginning of 2008 do
not have reliable information on the most
basic aspects of these disorders.
We do not know how many people in the UK
have Haemoglobin disorders, neither where
they live nor what type of disease they have got.
This information is vital for the improvement of
treatment services nationally.
This last couple of years have seen red cell
disorders assume a higher profile amongst
those who commission health services and
set health spending priorities .This increased
profile has come about in part because of
the screening programme and in part
because of the great efforts of organisations
such as the UK Thalassaemia Society (UKTS)
and Sickle Cell Society in representing their
members views .There is also a simple
recognition by health service planners that
the present services available to patients and
families with red cell disorders are not
equitable and represent a poor investment in
the long term health of these groups.
At present no-one has the information which
will allow the planning required for the
improvement of services in future years and
this is now proving to be a major barrier to our
efforts. I am pleased to say the Department
of Health has identified money to collect
basic data on the numbers of patients
affected, where they are and what they have
got .This will be undertaken by a ver y
experienced group from Manchester who run
the UK Haemophilia database. www.ukhcdo.org
is worth visiting. It is a ver y professional and
well run set up.
This initiative will move forward this year. A
patient information leaflet is being
produced. All those affected will be free to
opt out but we would strongly urge you
to participate. The group involved in
Manchester are sensitive to all the issues of
confidentiality that such data involves and
have discussed this in detail with the Forum
as well as UKTS and the Sickle Cell Society.
The first stage is to define what data is
needed, produce patient information and
establish a steering group to oversee the
process. Patient representatives are included
on the steering group and this stage is
almost complete.
The next stage will be to collect pilot data
before beginning to collect data nationally
.It is hoped that the Department of Healths
funding for this process will continue long
enough to get it firmly established.
There are several directions in which the
initiative could move after its first year, including
developing audit and patient management
systems .We are keen to draw on the interests
and skills of others previously involved in this
area in making both the initial data collection
process and any future developments a
success .I would urge you all to support this
initiative. I do believe it is a real step in the right
direction and will help us to improve the quality
of service over the years.
Dr Phil Darbyshire
CHAIRMAN UK FORUM ON BLOOD DISORDERS
Doctors at Johns Hopkins say Pamela Newton
is the first adult worldwide to be cured of sickle
cell disease using an experimental bone
marrow transplant.
Fifteen months ago, the pain from Pamela
Newton's sickle cell disease was excruciating.
She spent more time in the hospital than in her
Capitol Heights apartment. She was on 15 pain
pills a day, all heavy narcotics. She was
bleeding regularly and needed daily
transfusions of platelets. Today doctors at Johns
Hopkins Hospital say that Newton is one of the
first adults in the world to be cured of sickle cell
disease - and the first using an experimental
bone marrow transplant that could cure
thousands like her who have been told they will
never get better.
Word of a breakthrough gives hope to the
roughly 80,000 Americans - and millions
around the world - who suffer from this
debilitating and usually fatal disease, which is
predominant among African-Americans and
Hispanics. Bone marrow transplants have been
used to treat sickle cell disease for 20 years -
but almost all of the 200 cured have been
children. The treatments - high doses of
chemicals that knock out the patient's own
marrow before the transplant - are so toxic that
adults with sickle cell-induced organ damage
would be unlikely to survive them.
Brodsky said his team's procedure, developed
by Dr. Ephraim Fuchs and Dr. Leo Luznik, is less
toxic. They say they no longer believe they
have to destroy as much of the patient's
This information is
vital for the improvement
of treatment services
nationally ...
Doctors at John Hopkins
say Pamela Newton is
the first adult worldwide
to be cured of sickle cell
disease using an
experimental bone
marrow transplant ...
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 20
CAN PAINKILLERS CAUSE PAIN?
RESEARCH NEWS | 23 NEWS REVIEW | SICKLE CELL SOCIETY
marrow as they once did - so they administer
just enough chemotherapy to suppress the
immune system. That dose keeps patients from
rejecting the new marrow without harming their
organs. This change allows transplants for
adults, as well as children. Because the
procedure occurs later in life, it relieves parents
of the burden of making the decision for their
youngsters (even in children, the sickle-cell
transplant mortality rate is 5 percent to 10
percent). Instead, it allows the adult patient to
see how severe the disease is before deciding
whether to have a transplant.
Another transplant obstacle has been finding
a perfect bone marrow match - a full sibling's
marrow provides the best chance. But there's
only a 25 percent chance that even a full
sibling will be a match. And since sickle cell is
inherited, siblings may also have the disease.
That leaves about a 10 percent chance that a
patient will find a suitable donor. Brodsky's
procedure requires just a half-match -
meaning that children and parents of the
patient could be suitable donors.
Three days after the transplant, the patient is
given a high dose of a drug called
cyclophosphamide. Just as the bone marrow is
taking root, the drug kills off the donor's
lymphocytes - blood cells that are part of the
immune system.
The cyclophosphamide spares the donor's stem
cells and allows them to establish new blood
cells and a new immune system. The nascent
immune system is re-trained to see the patient's
body as friend, not foe. This prevents the patient
from rejecting the transplanted bone marrow -
and prevents the newly developing immune
system from attacking the patient.
www.baltimoresun.com/news/health/bal-
te.sickle30mar30,0,6112155.story
Information Source: Sickle Cell Information Centre
News Update for April 2008:
www.scinfo.org/news.htm
Controlling pain is very important for people
who have sickle cell anaemia. You will note
that I used the word painkiller in the title but
controlling pain in the first sentence. When I
first started caring for people with sickle cell,
I genuinely thought that I could do away with
their pain if only I got the dose of painkiller
right. Now, I know a little better and
recognise that the best I will be able to do
for many people is to reduce the pain and
help to push it into the background.
Professor Wall taught me when I was at
medical school in the 1970s; he was a great
expert in how pain was perceived. He taught
us that there were several levels at which pain
could be altered. If somebody trod on my
big toe now, the nerves in the toe would send
a message along the nerve fibre and up to
my spinal cord; just before the nerve enters
into the spinal cord, it goes into a sort of
telephone exchange. An ordinar y pain
message will then be sent through the
telephone exchange, up the spinal cord and
into the brain. There are more telephone
exchanges within the brain. The pain
message can be interrupted and altered in
these telephone exchanges, for example, if I
am sitting quietly and somebody treads on
my toe the message is likely to be sent
through loud and clear and I may even make
a big fuss! If on the other hand, somebody
treads on my toe when I am running away
from a fire, the telephone exchange will cut
out the pain signal and tell me to keep
running. Everyone who has had a sickle pain
will recognise that events around him or her
influences how bad the pain feels. Indeed,
many of you make use of this by having pain
distraction strategies.
Medicines used to reduce pain all act at
some point along the path from the site of the
pain up through the spinal cord to the brain.
Looking at what are called opioid drugs such
as morphine, one site of action is in the dorsal
root ganglion (the telephone exchange
where the nerve is going to join on to the
spinal cord). Morphine blocks the telephone
exchange so that the message is not
connected. That is what we want to happen.
Unfortunately, morphine and other drugs in the
same family can, at a slightly higher dose,
make the telephone exchange more
efficient! I often describe this to people as
having the equivalent of a conference call, if
this were to happen when somebody stood
on my big toe, a nasty pain becomes an
overwhelming pain. There is a technical word
for this; hyperalgesia and you can see that
there are many scientific articles about this if
you enter hyperalgesia sickle into Google
scholar. Google scholar is the more scientific
cousin to the ordinary Google program. You
will even see that there has been some recent
research involving a drug called naloxone in
mice that have been genetically engineered
to have sickle cell. Naloxone is something
that reverses the pain reducing effect of
morphine in most people so it is not
something to try immediately.
There is no doubt that we need more research
into pain management in people with sickle
cell. We need to raise funds to encourage
companies and scientists who properly
understand all of this to do more work in
this field. It is not a subject that most
haematologists would have sufficient
scientific knowledge about and I myself
recognise the yawning gap between knowing
that there is a problem and understanding
how to tackle it.
People with sickle cell do need to be aware
that hyperalgesia is a problem and if you find
that increased doses of painkillers appear to
make the problem worse, make the doctors
caring for you aware of this problem. It may
be that a mixture of different painkillers will
provide better pain relief than simply
increasing the dose of one. The difficulty is
that ever yone has individual needs and
individual responses. I have seen people who
developed hyperalgesia while on relatively
low doses of opioids while others have huge
doses but never seemed to develop this
problem. Drug manufacturers would claim
that oxycodone is less likely to cause this
problem and it may be that they are correct;
certainly some of the people that I care for
who used to take pethidine have found it a
more effective drug and have had fewer
problems but I would not like to claim that it
was entirely due to taking away the problem
of hyperalgesia. As always, pain control is a
ver y complicated situation but it is
encouraging to note that new developments
are in the pipeline.
Norman Parker
CONSULTANT HAEMATOLOGIST
Whittington Hospital, Magdala Avenue,
London N19 5NF 020 7288 5437
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 21
EDITORSS NOTE:
A company has recently been granted licence
for hydroxyurea for the treatment of patients with
sickle cell anaemia. This product was granted
licence under the European Orphan Drug
Scheme by the EMEA and therefore is the first
product to hold a licence specifically for the
treatment of SCD as opposed to a consequence
of a treatment of this condition as is the case with
iron mopping agents. The following article
presents the findings from a study of the
experience of teenagers taking the medicine.
BACKGROUND INFORMATION
Hydroxyurea is described as a disease-
modifying drug that affects certain cells in the
body. When used in sickle cell anaemia it
appears to increase the flexibility of the sickled
cells and reduce the complications in those who
have a history of severe symptoms. These
include: frequent painful events; a history of
recurrent acute chest syndrome; and severe
anaemia. It can also reduce hospital stays and
the need for blood transfusions. Although
hydroxyurea can reduce the number of painful
episodes, other complications and may prolong
lives, it is not a cure for sickle cell.
Furthermore, hydroxyurea is usually only
prescribed to those who meet strict disease
severity criteria, including frequent pain crises (at
least three a year) and frequent hospitalisations.
Most patients remain well on hydroxyurea but
there are possible side effects from the drug.
These can include bleeding problems, and
increased risk for severe infection; decreased
production of your red blood cells, making your
anaemia worse; stomach problems such as
diarrhoea; and a rash or redness of the skin on
the face. Many patients tend to be very anxious
about these possible side effects, however, if
used properly; these side effects are very
uncommon. Additionally, studies have not shown
any evidence of long-term problems, and some
patients have now been on hydroxyurea for
more than 10 years.
Studies with children have also reported a
marked clinical benefit with an evident reduction
or disappearance of symptoms. Almost 10% of
children with sickle cell disease are affected by
stroke with significant problems persisting in some.
Although transfusion has been shown to reduce
the recurrence of neurological events, there are
several problems associated with transfusion
including potential infection transmission and iron
overload. Therefore, hydroxyurea has substituted
transfusion with good effect.
The medication is taken in capsule-form orally
and daily as directed by the doctor. The dose is
then increased gradually until the maximum
tolerated dose or till a clinical benefit is seen.
It is important to note that over 1 in 10 adults
treated with hydroxyurea do not respond to the
treatment. It may also take weeks or months to
achieve the desired effects but improvement is
often reported after only a few weeks of
treatment. As with all treatments sickling may
occur whilst on hydroxyurea, and painful crises,
acute chest syndrome and other complications
have been reported whilst taking hydroxyurea.
Undergoing careful monitoring during
treatment is essential because hydroxyurea
may not be appropriate for all patients and the
effect of the drug must be checked throughout
treatment.
PATIENTS EXPERIENCES
Using semi-structured questionnaires we spoke to
six of our young patients on hydroxyurea to find
out about their experiences of this medication.
They ranged in ages from 13 to 20 years with an
average age of 17 years. They have all been on
hydroxyurea for at least a year, with an average
of 25 months on the medication.
All six patients cited their main reason for taking
hydroxyurea was to counteract the main
symptom of sickle cell: the painful crises. Patients
spoke about taking the medication to reduce,
avoid and prevent these crises. A few patients
also spoke about taking it to simply help them
improve their general health.
Patients reported that they did not always take
their hydroxyurea medication but this was due to
forgetting to take the tablets and was not
purposeful. Most patients said that their mothers
in particular would remind them to take them in
these instances. None of the patients reported
changing their prescribed medication amounts
and would only change the number of tablets
under the doctors prescription.
TEENAGERS VIEWS
OF HYDROXYUREA
MEDICATION
SICKLE CELL SOCIETY | NEWS REVIEW 24 | RESEARCH NEWS
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 22
In terms of whether patients felt they would suffer
from a crisis if they were not taking their
hydroxyurea medication; the majority felt they
would, highlighting their dependency on their
medication. One patient felt they were only
taking it as an extra precaution although they
had experienced better health and fewer
hospital admissions since being on the
medication. Another patient was unsure of the
beneficial effects of hydroxyurea as he had
suffered from several painful crises and hospital
admissions whilst on the medication.
All patients questioned felt that their health in
general had improved since being on
hydroxyurea; however, this varied from definite
improvements to only a little.
Additionally all patients demonstrated a
reduction in the severity (on a scale of 0-10) of
their sickle cell from before taking hydroxyurea
to now, whilst on hydroxyurea. The reduction
varied from patient to patient in line with the
idiosyncratic nature of sickle cell, but on average
the reduction in scores was approximately 4,
showing a marked reduction in severity.
Overall the patients questioned were positive
about this medication and had experienced a
reduction in the severity of their illness.
Hydroxyurea provides potential hope and help
for improving quality of life and the life span for
those with this devastating disease.
Sonia Patel
PSYCHOLOGIST
RESEARCH NEWS | 25 NEWS REVIEW | SICKLE CELL SOCIETY
A CLASSIC BALL IN OUR HONOUR
Saturday, 20th October 2007 will be a
memorable day in the minds of many. For
rugby fans, it will be remembered as the day
England and South Africa played the world
cup final in France. For those who were not
lucky enough to have travelled to Paris (or
should that be unlucky, since England did end
up losing!) the place to have been was the
Classic of Caribbean Charity Ball at the
luxurious Porchester Hall in Queensway,
London. This Black Tie event was hosted by ASL
Fundraising Association, an organisation
dedicated to raising awareness and funding
for charitable causes related to African
Caribbean and Bi-racial communities. ASL
Fundraising Association was set up in 2006 by
Alexander Stewart Locations (ASL), a property
company based in London. Lucilda Stewart,
Joan Duke and Shani Cadette were keen to
invest in the community by promoting events
which inform, empower and ultimately inspire.
In this their first of many charity balls the fund-
raising was in aid of the Sickle Cell Society.
It is commendable that ASL has recognized
the struggle for funding that many charities
face and has decided to act. They have
begun a movement and created a footprint
to stir the community into action, to increase
awareness of the issues facing Black
communities and raising funds to support the
organizations that are making a difference.
On 4 March 2008 Lucilda Stewart and Shani
Cadette presented the Sickle Cell Society
with a cheque for 5000 on behalf of ASL
Fundraising Association. Levi Roots, the
musician, chef and Reggae, Reggae Sauce
entrepreneur of Dragons Den fame was also
part of the cheque presentation. The Society
is very grateful to ASL Fundraising Association.
We hope that many other companies will
follow their lead.
Iyamide Thomas
REGIONAL CARE ADVISOR
Dr Asaah Nkohkwo (Director) receives cheque for 5,000 from Lucilda Stewart and Shani Cadette
of ASL Fundraising and Levi Roots, Celebrity Chef and Entrepreneur (Photo by Danny Dacosta)
John Mozie, Vice-Chair of the Society
at the ASL Ball
FUNDRAISING NEWS
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 23
In the last meeting of the Finance and
Fundraising Committee of the Society, the
Societys membership figures came up for
discussion, and we made a shocking
discovery: there are less than 200 registered
fee-paying members of the Sickle Cell
Society. To be precise, only 180 full and fee-
paying members of the Sickle Cell Society
contribute to the cost of running the Sickle
Cell Society.
This figure is so inadequate it is nothing less
than miraculous that the Society has survived
thus far. And so, we come to the defining
moment where we ask the inevitable
question all membership-based
organisations must ask themselves, why
membership? Do members matter, or can an
organisation like the Sickle Cell Society survive
without members?
There are 13,000 people with the Sickle Cell
disorder in the UK. 250 children are born with
sickle cell every year, so this figure of 13,000
is a moving target. The Sickle Cell Society was
set up purely to cater for people with sickle
cell, who automatically gain membership
without financial obligations. Through funds
like the welfare fund, the Society disperses
assistance to its community of sickle cell
individuals and their families. As part of its
charter the Society is also responsible for
creating awareness about the condition, and
working with the Government on policy
relating to sickle cell. Typical of this sort of
work is the adults standards on sickle cell,
and the current campaign on free
prescriptions for people with sickle cell.
Membership drives what the organisation
does. It is an organisations members that
determine the organisations strategy. To
buttress the key role members play in
organisations, the charities regulator for
England and Wales states on its website that
Membership of a charity can bring real
benefits both to the work of the charity and
for society more generally. When a charitys
members are active in shaping the agenda
and objectives of their charity, the trustee
body is refreshed and its accountability to its
members is improved. Membership charities
which are effectively run can also enable
individuals to be more involved in their local
communities and can contribute to fulfilling
the Government s agenda to increase
individual participation in civil society
(www.charity-commission.gov.uk/publications/
rs7.asp).
This statement captures the essence of
membership, and also exposes the Societys
own dilemma. Whilst we have less than 200
fully paid-up members, services we offer are
accessed by border associations, people
with sickle cell and their families who do not
necessarily pay to attain membership.
Membershi p i s not i ts own reward. Whi l st
membershi p of the Soci ety provi des
immense benefits to its members, it must
also create some obligations. One of the
best quotes on the responsi bi l i ti es of
membershi p came from the Ameri can
Judge, Justi ce Cardozo i n 1917, who
stated that membershi p i n the bar i s a
pri vi l ege burdened wi th condi ti ons.
Si mpl y put, al l associ ati ons requi re thei r
members to per form duti es to support
them, and someti mes that contri buti on
could be financial.
The Sickle Cell Society is no different. It is
resource-strapped, yet must maintain a
certain level of service to meet the
requirements of its stakeholders and service-
users. Increasingly, this lack of resource is
beginning to impact on its services.
The Society has no choice, but to review its
membership criteria. It must make changes
to its operating model if it is to survive. Both
members of the Society and its Trustees must
get involved in the on-going discussion about
what membership means, the rights of
membership and conversely, the obligations
of membership.
Membership of the Society, as in all
associations like it, has to carr y a financial
obligation for all its members or their families.
At the current yearly membership of 25.00,
the Societys membership is cheap at 2 a
month. Cheap by any standards, so why do
we have so few paying members?
Conversely, the membership could now
dictate to the Society what services it needs,
and timescales within which to deliver these
services. There is so much the Society can
offer, and the time is right for the Society to
re-invent itself and meet both its current and
strategic challenges, and the only way it can
meet these challenges is by increased
support of its members.
Humanity breeds humanity, and in all pursuits
of charity, so much has been achieved by
the resources and efforts of so few. In the
words of Winston Churchill, you make a life
by what you give.
Do something amazing: contribute to the
Sickle Cell Cause.
John Mozie
VICE CHAIRMAN, SICKLE CELL SOCIETY
TO PUT IT SIMPLY, ITS ALL
ABOUT MEMBERSHIP
SICKLE CELL SOCIETY | NEWS REVIEW 26 | FUNDRAISING NEWS
You make a life
by what you give ...
Winston Churchill
John Mozie
VICE CHAIRMAN, SICKLE CELL SOCIETY
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 24
Creating a Radio 4 appeal was an exciting
yet challenging journey. Once we had the
good news of our application being
successful our next steps were finding a
presenter, writing a script, recording the
appeal and finally advertising it.
Finding a presenter wasnt as hard as I initially
thought it would be, maybe I just got lucky!
During a monthly staff meeting we started
compiling a list of presenters whom would be
ideal. Then it was a matter of short listing them to
the top three and presenting this to our Board of
Trustees who would make the final decision.
I was on a serious hunt to track down Diane
Louise Jordans agent. I went through various
contacts and internet research which finally led
me to her agent. I had several discussions with
the agent and he confirmed that Diane was
more then happy to be our presenter. I then
booked a recording date with the agent and
with the BBC.
Our next important task was composing a script
and so scheduled meetings with staff. During our
thought showering (brainstorming) meetings we
developed our first draft which was sent to the
BBC producer. The script went through various
stages of drafts with assistance from staff
members, our board and the BBC producer who
was extremely helpful and patient. The draft was
then sent to Diane who added some personal
touches and finally brought it all to reality!
We all waited in anticipation for the recording
date which finally arrived. Being a big fan of
Diane since Blue Peter days I was very nervous
and excited to meet her. I met Diane Louise
Jordan for the first time at Broadcasting House
to record the appeal. She is even nicer in
person then when I spoke to her on the phone.
We spent about an hour going through the
recording process and by the end of it I felt like
I knew her all my life. Recording an appeal is a
serious issue however we have still managed to
have a good giggle.
Leading up to the appeal broadcast was
hectic with writing press releases, speaking to
press and media organisations and using
various methods to spread the word about our
appeal. Even though it was challenging they
say hard work pays off.
A total of 260 individual donations were made
and the total received through the appeal is
6,330.25 as last recorded.
I would like to thank everyone involved in
putting this appeal together especially Diane
Louise Jordan for giving up her time, all our
supporters who listened to the appeal and for
all those that kindly sent a donation. Without
your contribution and commitment it would not
have been a success!
Kalpna Patel
FUNDRAISING MANAGER
kalpna.patel@sicklecellsociety.org
Mob: 07809 396 410
JOURNEY THROUGH THE
BBC RADIO 4 APPEAL
FUNDRAISING NEWS | 27 NEWS REVIEW | SICKLE CELL SOCIETY
Diane Louise Jordan
Black History Month has more importance to us
than we realise. Black people not only went
through decades of slavery but also suffer from
a common disease that we fail to realise the
seriousness of it. Sickle cell anaemia is a disorder
that affects the red blood cells and is most
common in black people. St. Charles Sixth Form
College devoted their time and efforts to sickle
cell sufferers for Black History Month 2007.
We held an evening full of entertainment ranging
from education speeches from Shaun Bailey
himself, Fashion Show performed by students,
dance acts and power points. We sold tickets
and sold Afro-Caribbean food to raise money.
Overall with the help and support of students and
teachers we managed to raise over 500.00 for
The Sickle Cell Society and strongly encourage
others to do the same. My name is Shorliza
Odubore, I am 18 years old, a student at
St.Charles Sixth Form College and a successful
events organiser. Do what we did and help
someone in need.
Shorliza Odubore
ST CHARLES SIXTH
FORM COLLEGE
GOING
FOR GOLD
The Sickle Cell Society has spear-headed the
development of Standards for the Clinical
Care of Adults with Sickle Cell Disease in the
UK and have convened a working group
consisting of various experts in the field. The
Society asked Dr Ade Olujohungbe,
Consultant Haematologist at University
Hospital Aintree (who himself has sickle cell
disease) to chair this working group that has
developed the standards. The provision of
care for adults with sickle cell disease can
vary significantly between individual
professionals as well as healthcare provision
organisations. These standards are the tool
needed to address the inequalities in
provision and access to good quality care.
They will provide guidance on the absolute
minimum package of care expected for any
individual with sickle cell disease no matter
where they reside in the UK. The standards
will be launched at the House of Commons
on 9th July 2008. The Sickle Cell Society is
definitely Going For Gold in its bid to
ensure that sickle cell service users receive
the best quality care available.
Kalpna Patel & Diane Louise Jordan
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 25
Elookcasting, an ethnic modelling and
casting agency, held 'A Nite On The Runway'
which really was a night to remember. The
night was a well organised and well received
fashion show displaying amazing pieces of
some of London's most up and coming
designers. It was an opportunity for designers
and models alike to showcase their talents.
Elookcasting like to work very closely with the
community and often use local resources,
striving to involve local businesses whenever
they can. This drove Elookcastings decision
to work with the Sickle Cell Society, which is
based locally. Moreover the cause and
everything the Society does for people living
with Sickle Cell is ver y close to the heart of
CEO of Elookcasting-Tre Danso who has
friends afflicted with the condition.
Elookcasting helped raise a few hundred
pounds on the evening which also included a
raffle with some great prizes - a dvd player
and mobile phone to name a few.
Elookcasting would like to take the
opportunity to thank the members and staff
of the Sickle Cell Society for their hard work
and dedication to the cause. All of your
cooperation, support and guidance has
really helped us to promote the charity and
really is much appreciated.
For further information about Elookcasting or
further events and fund-raising, please email Tre at:
tre_moneyz@hotmail.co.uk or call: 07931858992
By Tre Danso
This year prisoners at Springhill Prison,
Aylesbur y raised 596.96 during their Black
Histor y Month fundraising activities. Events
varied from numerous speakers, including
a visit from Anti Slaver y International and
two music performers. We wish to thank the
organising prisoners who were supported
by the education department, prison staff
and governors.
By Peter Crowther
ELOOKCASTING
SICKLE CELL SOCIETY | NEWS REVIEW 28 | FUNDRAISING NEWS
We would like to congratulate Mr and Mrs
Adrian Clarke who got married in September
2007. They kindly asked guests to donate to
either the Sickle Cell Society or Shelter instead
of receiving gifts. As a result we have
received 425 in donations. Thank you to all
the guests who donated and all the best to
the happy couple.
JACKEE BROWN
Community Partnerships and Volunteering
organised a live Reggae event on October
30th 2007. We held it for students suitably in
the Union bar at the Civic Quarter. The event
was in celebration of Black History Month and
was an excellent ending to a series of events/
lectures that the CPV office, in partnership with
the Institute of Northern Studies and the School
of Social Sciences, had arranged throughout
October. We showcased the very talented
local band "Roon Bokka" fresh from Leeds
College of Music. We also had a selection of
locally renowned DJ's all of whom played
seamless sets with a mixture of Reggae, Drum
and Bass, Hip hop, Soul and Dub.
We had the aim of raising money for the charity
Sickle Cell. With this in mind we held a prize
draw with prizes donated by Red Stripe. I now
realise I over estimated the willingness of
students to part with their pennies. In spite of this
we raised just over 139.00. Thoughtfully, the
LEEDS
METROPOLITAN
UNIVERSITY
If you have ever wanted to do a parachute
jump here is your chance. The Sickle Cell
Society is looking for hundreds of adventurous
volunteers to make a fundraising parachute
jump and if you raise enough in sponsorship
you will get to jump for free! There are three
types of jump available an Accelerated
FreeFall where you can experience the thrill of
skydiving solo from up to 12,000 feet, a
Tandem Skydive from 10,000 feet attached to
a professional instructor and a Static Line jump
which is performed solo from up to 3,000 feet
- and you can jump from any one of over
twenty British Parachute Association approved
airfields across the UK. No experience is
necessary as all training is given and if you raise
anything from 360 (depending on the type of
jump you choose) you will receive your jump
for free.
So if you would like to make a thrilling skydive from
10,000 feet or an exhilarating solo jump from up to
3,000 feet give us a call at the office on 020 8961
7795 - we will send you a full information pack and
everything you need to take part in the experience of
a lifetime.
PARACHUTE
FOR FREE!
SPRINGHILL PRISON
Students Union have donated an additional
136.00. The Event ran very smoothly and our
team is very happy with how willing people are
to help arrange an event for a good cause.
Everyone who attended had an exceptionally
good experience and the feedback has been
incredibly positive. As an events management
placement student working on this event
alongside the CPV team I can say it has been
a valuable experience and I am very grateful
to everyone's support.
Jerry-Eve Rose
EVENTS MANAGEMENT STUDENT
COMMUNITY, PARTNERSHIP & VOLUNTEERING
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 26
FUNDRAISING NEWS | 29 NEWS REVIEW | SICKLE CELL SOCIETY
Weve teamed up with Justgiving.com, the
UKs leading online fundraising website, so
you can donate and raise funds for us online.
Using Justgiving saves us costs and reduces
our admin burden, so going online is by far
the most efficient way of supporting us.
Its easy to make a single or monthly donation
with a credit or debit card online:
All you need to do is go to
www.justgiving.com/jgdemo/donate
Justgiving reclaims Gift Aid automatically and
pays your donation directly to us at the end of
every week, and the site is 100% secure.
Justgiving also makes it easy to raise money:
you can create an online fundraising page in
minutes to collect donations for any
sponsored event or appeal. You can create
your own for any event at
www.justgiving.com/jgdemo/raisemoney
Fundraising pages are just like paper
sponsorship forms, except theyre online, so
you dont have to traipse around collecting
cash and cheques. Simply personalise your
page with a photo and message and email
the web address to all your contacts. Friends,
family, work colleagues and anyone else,
from anywhere in the world, can then make a
donation using your page.
You can create a fundraising page for
absolutely anything! You could get sponsored
to run, swim, cycle, get fit, grow a moustache
or have your head shaved. The only limit is
your imagination.
If you have any questions, or need any help,
you can contact the Justgiving helpdesk on
0845 021 2110 or helpdesk@justgiving.com
Monday to Friday from 9am to 6pm.
Thank you to all our fundraisers who have
helped to raise 10,115.65 to date by using
this free service.
For more information please call Kalpna Patel on
020 8961 7795
JUST GIVING
Wedding List Giving was set up in 2004 in
order to encourage couples to make
donations to charity rather than ask for
wedding gifts. The scheme was established
by two cousins, Holly and Hannah, both of
whom have a background in fundraising for
charity. Hannah ran the scheme (and
participated in it on her wedding day) for two
years until becoming a mum. The scheme is
now run by Holly.
The scheme has now grown to encompass a
number of additional schemes that celebrate
all aspects of life through giving. Lifelong
Giving helps people to celebrate important
moments in life, by asking friends and family
to donate to charities and not-for-profit
organisations.
There are 6 different types of schemes:
Wedding List Giving
Civil Partnership Giving
Anniversary Giving
In Memory Giving
Birthday Giving
Christmas Giving
If you dont want to receive presents for a
celebration (be it your birthday, wedding,
anniversary or Christmas) or prefer to mark the
passing of a loved one with charitable gifts rather
than with flowers, then this service is for you.
The schemes offer you the option of raising as
much as you can for your favourite charity OR
supporting several different charities to mark
your special occasion. We make sure that for
every 1.00 given by your friends and family at
least 1.00 reaches the charity.
Please think of the Sickle Cell Society when you
are celebrating an important moment in life
and visit www.lifelonggiving.com.
WEDDING LIST GIVING
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 27
SICKLE CELL SOCIETY | NEWS REVIEW 30 | FUNDRAISING NEWS
If you ever wanted to do an exhilarating
challenge for charity here is your chance.
Sickle Cell Society is looking for adventurous
volunteers to cycle from London to Paris
connecting two of the worlds most chic cities
on one of the best cycling routes in Europe!
Cycling through beautiful English villages and
into stunning rural France youll pass historical
landmarks and famous battlefields from
World War I until you reach Paris, undoubtedly
one of the most magical places on earth.
The sense of achievement youll experience
will be one youll treasure forever. For those
of you in search of the challenge of a lifetime
simply give us a call at the office on
020 8961 7795 and we will send you a full
information pack and everything you need to
take part in this fantastic event. An
unforgettable experience awaits you...
London to Paris Cycle Ride Sponsorship
Request
If you cant take part then why not sponsor
others who are taking part? Please support
our two dedicated riders by logging onto their
personal fundraising pages to find out more
and donate!
www.justgiving.com/richardrogers
www.justgiving.com/franceswiltshire
All the best to everyone taking part in
this event.
CYCLE FROM
LONDON TO PARIS
FOR FREE!
SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 28
NEWS REVIEW | SICKLE CELL SOCIETY ASK DR REES | 31
QUESTION
I have 2 children aged 7 and 4 of mixed
parentage, I am white British. The childrens
father is Black British and his parents were born
in the West Indies. When we had our children
and asked whether sickle cell testing was
required we were advised that it was not
necessary or standard procedure in Plymouth,
South West of England and we accepted the
policy at the time.
However, my four year old daughter is going to
have a general anaesthetic for dental
extraction and the hospital have asked that she
be tested prior to the operation. I am extremely
worried and respectfully request you advise me.
I have many questions including: what are the
risks and percentages of mixed race children
carrying this disease? Why were my children
not tested at birth and should they have
been? Is there additional risk to them going
under anaesthetic without being tested and
what exactly does the test process involve.
Thank you so very much for any information
you can offer to a very confused and nervous
mum of 2 beautiful girls.
ANSWER
Your question was passed on to me by the
Sickle Cell Society. I think it is unlikely that there
is anything to worry about. 5-10% black British
people carry the sickle cell gene (sickle cell
trait, HbAS) and it is much rarer in white British -
affecting less than 1:1000 people. It is therefore
possible that your daughters could carry sickle,
if their father is also a carrier, but very unlikely
that they would have sickle cell disease (HbSS).
The test is just a simple blood test and it usually
tales a few days to get the results. If your
children are carriers of HbAS it is not linked to
any significant health problems. Anaesthetists
like to know if someone carries sickle before
they put them to sleep although there is no
special treatment and the added risks are very,
very small. If the mother is white British, in
general antenatal testing is not performed in
that the risks are very low, although it should be
possible to be tested if you request it.
QUESTION
I was wondering if you could help me with a
problem I have at the moment. I am writing
a report on sickle cell anemia but am
having trouble in finding any statistics. For
example: I am looking for occurrences of
sickle cell in the UK/Worldwide over the last 5
years and mortality in the last 5 years due
to complications.
ANSWER
The Sickle Cell Society has asked me to help
with your question. Although I am technically
on sick leave I would be pleased to help if I
can. I need to know what level of report you
are writing, so that I can put the answer in an
appropriate format.
Allison Streetly (NHS Director for sickle cell &
thalassaemia screening) would have a lot of
the statistics for the UK, you can find her by
googling her. The truth is that no one knows the
exact figures for the UK, figures of 10 - 12,000
are usually given and this would cover those
with S/S, S/beta thalassaemia and S/C. Her
report ,"Sickle Cell Disorders in Greater London",
was published in 1997 but remains a valuable
reference source. The national screening
programme will have data about the number
of individuals born in the last few years.
Worldwide, the genes are much more
widespread than we tend to realise, here in the
UK. We are focused on West Africa and the
Caribbean because many of the people
affected come from families who live, or lived
in those countries but Nigeria probably has the
highest number of affected people.
Mortality is heavily influenced by environment.
On May 21st NCEPOD will be releasing the
details of a study of causes of death in people
with sickle cell over a two year period. You will
understand that I am duty bound not to reveal
the outcome of that study.
When I started in this field in the 70's, infection
was the leading cause of death with
bacterial infections such as pneumococcus
being high on the list of causes of death.
Now, with better immunisation and penicillin
prophylaxis those deaths have largely
disappeared in the UK and that has had a
profound effect on life expectancy. Professor
GR Serjeant has published good figures from
Jamaica, enter him into medline and you will
see his data.
Acute chest syndrome has been a traditional
enemy in sickle cell, and remains a significant
cause of death.
Stroke is a serious problem in children and in
adults with sickle cell.
Renal failure is likely to feature more
prominently as we learn better ways of
avoiding stroke again Prof Serjeant has
published recent data showing that the over
65's all have at least some evidence of
kidney failure.
If we went to a rural village in Africa, infection,
including malaria would remain top of the list of
causes of death. In the cities, with better
access to health care, there is inevitably a
different profile of problems.
You may need to refine the aims of your project
as you can see that you will otherwise be trying
to cover a very large field.
Please continue sending in your questions by
email or by post and Dr Rees will return with a
reply, possibly with the help from our pool of
Medical Advisers.
Please send to:
info@sicklecellsociety.org
David Rees
SENIOR LECTURER/CONSULTANT HAEMATOLOGIST
MEDICAL ADVISER - SICKLE CELL SOCIETY
ASK DR REES
THE SOCIETYS MEDICAL EDITOR
SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 4
SCS News Review
We would like to know your news, views and
comments for inclusion in the next edition.
Please send your contributions to
info@sicklecellsociety.org.
Sickle Cell Society
54 Station Road, London NW10 4UA
T: 020 8961 7795/4006 F: 020 8961 8346
Registered Charity No. 1046631 Company No. 2840865
Editors Kalpna Patel and Iyamide Thomas.
The Sickle Cell News Review is an open forum to individuals and interested groups and organisations,
therefore opinions and ideas expressed by authors are not necessarily those of the Sickle Cell Society.
donat i ons
Payroll Giving ................................................................................................................... 10,700.04
Radio 4 Appeal ................................................................................................................. 6,275.25
ASL Fundraising - Lucilda Stewart ....................................................................................... 5,000.00
Giving.Com Limited .......................................................................................................... 3,006.75
Mark Sarfo-Kantanka - Ex Fundraising ................................................................................ 2,000.00
SAB - Evol Graham ............................................................................................................ 1,825.00
Lucreta LaPierre - Ex Fundraising ........................................................................................ 1,790.50
Karl Murray - AWEDIS .......................................................................................................... 1,211.00
Church of God Evangelism - Pastor Lorraine Buchanan .................................................... 1,000.00
St Thomas' Church - Clapton Common ............................................................................... 935.61
Woodcote High School & Sport College - Surrey .................................................................. 855.40
St Thomas Parochial Church Council - Maergaret Browne ................................................... 839.17
Nottinghill Methodist Church ................................................................................................ 691.50
Claremont High School - K Plokowski .................................................................................... 608.31
HM Prison Springhill - Eddie George....................................................................................... 596.96
Sweetwoods Golf Club - Mrs J S Swanston ............................................................................ 566.41
Carol Phillips .......................................................................................................................... 525.28
St Charles Catholic Sixth Form College - London .................................................................. 515.05
Lance Corporal Edia Bruno - The British Forces Post Office .................................................... 500.00
Calvary Church of God - Joan St Lois ................................................................................... 500.00
ITV Services Limited - On behalf of MC Micheal Harvey ....................................................... 500.00
Carmen Gowie ..................................................................................................................... 500.00
ICAN - J O Femi-Famakinwa & I B Adeagbo ........................................................................ 500.00
Ashurst LLP - Sharon Brown .................................................................................................... 500.00
Alma Henry Charitable Trust - London ................................................................................... 500.00
Funeral care - In Memory of Phillip Stephen Charles ............................................................ 451.00
Hobsons International ........................................................................................................... 350.00
St Mellitus with St Mark Parochial Church School ................................................................... 300.00
Leeds Metropolitan University - Jerry Eve Rose ...................................................................... 275.95
Amos Dadzie ........................................................................................................................ 265.00
Wealdstone Methodist Church ............................................................................................. 257.50
Guardian Newspaper ........................................................................................................... 257.50
The Mill Hill Sch Foundation - Helen Lawson .......................................................................... 251.80
P C C of St Augustines Church - Tooting................................................................................ 250.00
ABI Associates Limited - Kim.................................................................................................. 250.00
A R Hall ................................................................................................................................. 250.00
Louise Jeffery ........................................................................................................................ 250.00
At It Production - London ...................................................................................................... 250.00
V Watson ............................................................................................................................... 250.00
Okebugwu C Ogbonna - Tottenham.................................................................................... 250.00
Babatunde Adenibi .............................................................................................................. 250.00
St Augustine Church - Tooting ............................................................................................... 250.00
Onyemara Nwanneya IMO/ABIA Womens Asso - London ..................................................... 250.00
The Sickle Cell Society would like to thank all those who have donated.
Please note we have only mentioned donations 250 and over as space would not
permit us to mention every donation.
www. s i ckl ecel l s oci et y. or g
SPONSORED BY
event s
5th July 2008
Royal College of Physicians Open Day
Celebrating 60th Anniversary of the NHS
6th July 2008
Service of Remembrance
The Parish Church All Souls, London
6th July 2008
British 10K London Run
9th July 2008
Launch of Adult Standards of Care
House of Commons
2nd-6th July 2008
London to Paris Cycle Ride
1100 minimum sponsorship, Paris
17th July 2008
Black Tie Event
By Thebes Group, Kensington Roof Gardens
19th July 2008
Annual General Meeting
Emmanuel Centre, London
1st-8th August 2008
Annual Childrens Holiday
Kings Park, Nothampton
10th-14th September 2008
London to Paris Cycle Ride
1100 minimum sponsorship, Paris
4th-5th November 2008
International Preconception Conference
London
SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 1