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Issue 1 | Summer 2008

Can pain killers cause pain? Radio 4 appeals for Society Going For Gold The voice of the Dr Ade Olujohungbe chairs group Sickle Cell Community set to standardise adult care

Sickle cell disorder is the world’s most commonly inherited blood condition SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 3

contents

• Chairperson’s message 03 Jeans For Genes P08

• Director’s 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 Stroke Prevention P20

• Service User News 15

• Service Provider News 17

• Research News 20

• Fundraising News 25

• ‘Ask Dr Rees’ 31 Radio 4 Appeal P27 SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 1

chairperson’s message

For the past twenty nine years, the Sickle Cell and receive the best possible care including Society has been a driver for the reform of antibiotics, which has been proven to be an services for people with or at risk of sickle cell effective defence against life threatening disease. As early as 1981, the Society had infections. However, very little has been enough information from public consultation, achieved with the education and training of DR Lorna Bennett FRSA letters and other means, to put forward other key professionals and employers (Nos 1, CHAIRPERSON SICKLE CELL SOCIETY 24 recommendations on the need for 17-21), and with the recommendations for improvement of sickle cell services.1 The full better public information (Nos 2&3). We have list of the recommendations can be viewed not yet achieved all the recommendations for below. The next phase for transforming care government (Nos 22-24), but we are pressing has four important elements and the Society hard for free prescriptions for people with a will be working in partnership with others to sickle cell disease. realise them. 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 “The Society’s black and minority ethnic people will not always be able to access traditional services, next phase for including health care, social services and the benefits system. The use of outreach to support transforming Adult standards meeting these groups is essential if we are going to ensure that equity of access is a reality for care...” people in these groups and if we are to prevent The first element is ongoing lobbying and health inequalities increasing.2 The Sickle Cell advocating for the implementation of the 1981 Society could play a key role in delivering recommendations, as these were the outreach health and social services for people embodiment of patient views then, but are still with sickle cell disease. Our Regional Care relevant for improving health, education and Advisors outreach programme is supported by social services at this time. Progress has been over 200 active volunteers, made up of made with improving access to screening and motivated members of the community. These counselling, laboratory techniques and volunteers have local knowledge of the reporting are of high quality, the NHS PEGASUS geography of outreach areas; they have the (www.pegasus.nhs.uk) trained practitioners and general acceptance of the local people and other health care professionals are in place to often speak the language of their respective communicate results; antenatal patients and groups. There is scope for commissioners to parents have access to a range of information make better use of the voluntary sector in materials including a handbook for parents providing services at ‘grass root’ level for the and leaflets in various languages communities affected by sickle cell disease. (Recommendations Nos 4-15). A major breakthrough is the screening of newborn The third element is enhancing the Society’s babies for a sickle cell disease. (No 10), appeal as a credible partner in its role as a implemented in England by the NHS Sickle Cell centre for independent living. In 2005 the and Thalassaemia Screening Programme Government’s strategy document “Improving (http:/www.screening.nhs.uk/sickleandthal). This the Life Chances of Disabled People” is ensuring that all babies get into the hospital recommended that ‘By 2010, each locality system quickly, to be seen by the best experts (defined as that area covered by a Council

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with social services responsibilities) should have SUMMARY OF RECOMMENDATIONS, Britain based at Willesden General a user-led organisation modelled on existing FROM SOCIETY’S REPORT ON THE Hospital, Brent Health District Centres for Independent Living (Prime Minister’s NEED FOR IMPROVED SERVICES Strategy Unit, 2005, recommendation 4.3)’.3 13. That Health Authorities collect statistics The Society as a grass root organisation, 1. That professionals (doctors, dentists, about the incidence and mortality rates engaged in providing information and advice; nurses, other health workers, teachers, of sickle cell disease advocacy and peer support; support in using social workers, nursery staff etc) receive direct payments and/ or individual budgets; information about sickle cell disease and 14. That patients known to have sickle cell support to recruit and employ personal trait during basic and in-service training. disease be issued with cards and be assistants; assistance with self-assessment; followed up at specialist clinics training, patient support and lobbying on 2. That Health Authorities adopt more disability equality issues; is functioning as a vigorous policies towards informing local 15. That specially trained health visitors be Centre for Independent Living (CIL). As such, communities about sickle cell disease attached to such clinics the Society will work alongside other CILs within trait a network of organisations contributing to 16. That the understanding and consent of strategies for disabled people. 3. That funds for educational materials be patients or their parents always be made available by the Health Education obtained before any research project is The fourth element requires leading or Council and local health education undertaken contributing to the design, delivery and departments monitoring of standards of care, so that people 17. That teachers in schools receive with sickle cell disease can receive a high 4. That speciality designed educational information about the education needs quality standardised service, wherever they live material be provided for families of children with sickle cell disease in the country. On the 9th July this year, the affected by sickle cell disease Society will be launching ground breaking 18. That home tuition be made available standards for the care of adults with the 5. That all members of high risk groups be when necessary for children with sickle condition. This will give patients in all parts of screened prior to surgery and during cell disease the country, an assurance that they will receive pregnancy to deter undiagnosed cases an appropriate level of hospital and of sickle cell disease and thereby avoid 19. That children affected with sickle cell community care. Once these standards are sudden emergencies and complications disease be offered early careers implemented, this will bring to an end the that could be fatal guidance by persons familiar with the current postcode lottery situation, where the variability of the condition quality of care people with sickle cell disease 6. That information in writing (e.g. in the form receive often depends on where they live. The of a leaflet) be given to people about 20. That Housing Departments and District Sickle Cell Society is grateful to all those who sickle cell disease and trait before Community Physicians deal more have contributed to the development of the screening takes place sympathetically with the housing needs of families affected by sickle cell disease 7. That screening should always include haemoglobin electrophoresis and not just 21. That employers be informed about the the sickle or solubility test work capabilities of persons with sickle cell disease, so that they are not unfairly 8. That the person being screened be given discriminated against the result on a card stating their haemoglobin type and not just whether 22. That patients with inherited illnesses, such they are ‘sickle positive’ or ‘sickle as sickle cell disease be exempt from Discussion of the standards negative’ prescription charges

9. That expert counselling should be offered 23. That the government allocates funds for 1. Sickle Cell Society (1981) Sickle Cell to those people found to have a trait research and development projects Disease, The Need for Improved Services, following routine screening prior to related to provisions for sickle cell disease Summary of Recommendations p4 publ. surgery or during pregnancy the Sickle Cell Society 24. That the Department of Health and Social 10. That there be national policy to screen Security take a lead in ensuring that all 2. DOH (2006) Our health, our care our say: a newborn babies for sickle cell disease the above recommendations are new direction for community services (4.9) implemented. It should circulate 11. That screening and counselling facilities updated information to all general 3. DOH (2007) Mapping the Capacity and be made available for people who wish practitioners and Health Authorities Potential of User Led Organisations in to find out if they carry a trait England: A Summary of the Main Findings from a National Research Study 12. That Sickle Cell Information and commissioned by the Department of Screening Centres be set up, preferably Health pages 4-7 modelled upon the only existing one in

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director’s message

It’s that time of the year when we gear up our work in preparation for a busy summer season A couple of years ago, we mentioned a study, ahead. The Society will be involved in releasing then underway, to retrospectively examine a number of telling evidence documents, which whether deaths due to sickle cell & thalassaemia we hope will empower our campaign further. could have been prevented. The National Dr Asa’ah Nkohkwo FRSH Confidential Enquiry into Patients Outcomes & DIRECTOR OF THE SOCIETY As you may recall, the Society’s Regional Deaths (NCEPOD) reported at a packed UK Support Care Programme underwent its Forum on Blood Disorders, held at the Roben’s summary assessment last year. As promised, the Suite, Guy’s Hospital, London on 21 May. I September, after which we wrap up in October report by the independent evaluators should represented the Society at the NCEPOD. with Black History Month. have been published by the time you read this. In short, the report highlights the key role that our Lessons learnt from the NCEPOD enquiry will Ps, do not hesitate to contact HQ Regional Care Advisors (RCAs) have played over inform the on-going development of the ([email protected]) for further the three years of the project, in facilitating the Standards of Care for Adults with Sickle Cell information on the above, or indeed any query collaboration between the various stakeholders, Disorders, an initiative being orchestrated by the or comment you may have for us as you within the context of working with the wider Society. Another development of note is an NHS browse through this first issue of our revamped workforce for public health promotion. It Register for Sickle Cell & Thalassaemia. Dr Phil News Review. The issue also features confirms that the non-medical aspects Darbyshire, chairman of the UK Forum on Blood information on the topical issue of Transcranial must never be forgotten in planning and Disorders states the case for this arguably long Doppler (TCD) ultrasound. TCD is currently the commissioning for collaboratively supporting overdue resource. established technique to predict and therefore those living with lifelong conditions such as sickle help manage the risks of having a stroke in cell disorders, if we meaningfully seek to improve The Standards of Care for Adults mentioned young people. Your attention is drawn to a the quality of their lives. This is particularly previously shall be launched by the Society at the number of consultation requests from the important given the uncertainty about the future Houses of Parliament, on 9 July, and discussed Government and other agencies. We would, of the project due to the current funding base of further at our 29th AGM, scheduled for Saturday also, be most grateful, for your feedback on a the Society. We remain forever grateful to the Big 19 July at the Emmanuel Centre, Marsham number of surveys we are currently conducting, Lottery who have funded the project over the Street, Westminster. As recently, this year’s AGM to know how we could serve you even better, last three years, and enabled us to demonstrate will be an all-day event. as we forever strive to remain your “voice of the the huge potentials of the RCA concept. We sickle cell community”. now urge every service user, in particular, to As usual, the AGM shall formally receive our bring the case of the threatened future of the statutory reports and statements of accounts. On the international scene, a conference was RCA project and this Health Impact Assessment We enclose Society membership forms for your held in Paris, on 15 March, by the European report to the attention of their local NHS use or distribution to family and friends. Organisation on Rare Anaemias (EORA). The managers. “The RCA project represents an Membership to the Society, not only entitles you Society is represented on this initiative by two exciting collaboration between agencies and is to our range of membership benefits, including trustees- Dr Philip Nortey and John Mozie, the a model for the future. It should be embedded carefully selected discounts, but most vice chairman of our board. EORA aims to in the (commissioning) system for the benefit of importantly to vote at our General Meetings. empower patients across Europe by giving them service users and providers”. (Dr Joan StJohn GP, You may even wish to run for the board! There a much more effective voice through a forum Trustee of the Society). are 7 vacancies going at the Board, to be filled for patient groups and related pharmaceutical by elections at the AGM. organizations across Europe.

We enter our annual sickle cell awareness Finally, join me to congratulate our chairperson season with our traditional Service of on becoming Dr Lorna Bennett FRSA, following Remembrance and Thanksgiving on Sunday 6th her recent election to the Fellowship of the July, once again at All Souls Church, Harlesden, prestigious Royal Society for the encouragement London NW10. We look forward to news from of Arts, Manufacturers & Commerce. This award your neck of the woods, on any activity you wish recognizes achievement of “eminence in their Dr Philip Nortey (right) with EORA colleagues us to support you to organize during the chosen profession or calling, and who want to awareness months from July all the way to see action to change society for the better.”

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SOCIETY NEWS WINNING THE NOVARTIS SCHOLARSHIP AWARD

surprised! I just wished my late father was alive going to University to pursue my career in to witness it. At first it did not quite sink in and I Pharmacy or other pharmaceutical programs. Scholarship Winners for 07 / 08, Ms Sally-ann kept saying it is the Sickle Cell Society’s money! I would like to use this opportunity to thank Ephson (l) and Ms Marie-Claire Monkam (r) I could not commence the course in 2007 as Novartis Oncology, the Sickle Cell Society and pose with Nan Oliver of Novartis I had a couple of bad crises which were all those who have been very supportive to me triggered by family bereavement. I spent eight especially Iyamide Thomas who relentlessly Novartis Oncology Ltd has for the past two weeks in hospital and got very upset as I encouraged me during a very crucial period years given the Society two annual thought I might lose the scholarship. However, in the last year. I will also like to encourage all educational scholarships of £2500 each to be Iyamide assured me we could defer things until those with Sickle Cell disorder not to let anything awarded to individuals with sickle cell disorder my health improved. I have now deferred the come between their way of achieving their who are pursuing courses to further their main HND in Health and Social Care course dreams to have education or otherwise and education. Below are articles from three such until September. I have started doing some not letting sickness make you feel you can’t do scholarship winners. foundational courses which I had also it. We have a right to live a very normal life as mentioned in my scholarship application every other human being and when sickness SALLY-ANN EPHSON including one called ‘Starting with Psychology’. comes our way, let’s tell it what I always do, When I was a little girl, I always wanted to be a “you will not win this time”. nurse especially because I was growing up with I am so grateful to the Sickle Cell Society for the the chronic blood disorder sickle cell anaemia. scholarship and words cannot express my However, my late father thought nursing would gratitude, I think it is a wonderful charity and be too stressful for me. I had a nurse’s set, and forever helpful. I will dedicate my degree to my ““I am so grateful to the still dreamt about being a nurse some day. As son and my late father. Once again Novartis Sickle Cell Society for I grew up, I learnt a lot about my condition and and Sickle Society: “Thank You!” every time I visited hospital or was an inpatient, the scholarship and patients (and even nurses) would listen to my MARIE-CLAIRE MONKAM advice, some even thinking I was a nurse! I can’t thank Novartis enough for giving me this words cannot express Sickle cell and thalassaemia had become my wonderful opportunity to pursue my dream. It is my gratitude ...” passion. I would attend a lot of study days, and more than words can express. Having been speak about sickle cell to both the public and through pain most of my life, I have always professionals. However, I noticed the wanted to pursue a career in the medical field professionals were not taking me seriously as I so that I can be able to play an important part NEWS FROM DAVID SAMUEL, 2006 did not have medical qualifications. in the lives of those suffering from pain and SCHOLARSHIP WINNER Sometimes I would have to debate with them other medical conditions. I planned to apply I would like to thank Dr Lorna Bennett for but still no qualification, no response. I then for a Pharmacy undergraduate program in the nominating me for the 2006 Novartis decided to do something about this and study university but was told I have to get into an Scholarship award which has really benefited a health related course at college. Due to Access course since I wasn’t science inclined, me in furthering my career in IT, and also for frequent illness and bad crises I was advised to didn’t have the funds for all that and was very referring me to the Barking, Dagenham and do a more flexible Open University course. depressed about it knowing that I would hardly Havering Support Group. The £2500 scholarship When I did the first course 'Understanding be able to raise the money for the fees. I award has been used for: Final year tuition, Health' I was so happy and wondered why I decided to get in touch with the Sickle Cell laptop computer, Oracle Certified Associate had not done something like this earlier! Society and told them my worries. I was Computer-based Training CD, Oracle Certified advised to apply for the Novartis Scholarship Professional Computer-based Training CD, When my Sickle Cell Society Regional Care and was very excited when my application Exam Fees. The help from the Society’s Novartis Advisor, Iyamide Thomas told me about their was successful. Scholarship and that from the Barking, annual Novartis scholarship award of £2500 Dagenham and Havering Sickle Cell Support each, I was a bit wary about applying. I am currently in the middle of my Access Group has really helped stabilize my life and I Iyamide convinced me; I applied and just course to be completed in June. From there, if hope these two organizations will continue to wrote the truth. When I won I was completely I get the grades of which I believe I will, I’ll be assist not only me but others like myself.

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requirements at the time a claim is received, or THE SICKLE FREE PRESCRIPTION a charge was paid if a refund is claimed. CELL SOCIETY PETITION: THE People who have to pay NHS prescription Invites you to its charges and need many prescription items GOVERNMENT'S could save money with a prescription 29th Annual General Meeting prepayment certificate (PPC). A three-monthly on19th July 2008 RESPONSE PPC (costing £27.85) or an annual PPC (costing £102.50) will save people money if they need VENUE more than four items in three months or 14 The Emmanuel Centre The on-line petition to the Prime Minister items in 12 months. To help spread the cost, Marsham Street, Westminster, (submitted by service user Doreen Gowie) for people can now pay for an annual PPC by ten London SW1P 3DW free prescriptions for individuals with sickle cell monthly direct debits. disorder closed on 16 April 2008. A total of 7026 TIME people signed the petition! Here is the More information about the extensive arrangements 10.00am to 5.00pm Government’s response which would have been for providing help with NHS prescription charges e-mailed to everyone who signed the petition: and other health costs can be found in the leaflet HC11: Help with health costs, which is available Come and support Entitlement to free prescriptions is currently from Job Centre Plus and NHS hospitals. Dentists, The Sickle Cell Society based on the principle that those who can opticians, pharmacists or doctors may also have and have your say! afford to contribute should do so, while those them. The leaflet and further information about help who are likely to have difficulty in paying should with health costs can be found in the 'NHS costs be protected. For example, children under 16 and exemptions' section of the Department of Free transportation is available for this event. and people aged 60 or more are entitled to Health's website at: www.dh.gov.uk. free NHS prescriptions. People with specified Delegates will be entered into medical conditions are also exempt from a FREE mystery prize draw. prescription charges. The list of medical HELP US HELP conditions giving prescription charge exemption was introduced in 1968 after being agreed in OTHERS! For details on this event and others discussion with the medical profession. coming up during 2008 Awareness Season (July-October) look out for The Health Select Committee examined the Thanks to funding received from this year’s our news releases or please contact position of charges in the NHS in great depth Jeans for Genes appeal, the Sickle Cell us on 020 8961 7795 or email and made a number of recommendations. Society has launched a Regional Care [email protected]

The Department of Health responded on 17 Volunteers’ Project (RCVP) covering London. Sponsored by an unrestricted community grant from October 2006 and agreed to review Through a network of trained volunteers this Novartis Oncology Ltd prescription charges. project will provide home-help, hospital visiting, respite care and befriending to The Government has now carried out an individuals and families affected by sickle cell JOIN THE internal review of prescription charges and will disorder. We are now recruiting volunteers for be inviting views shortly on options for change the RCVP, so if you have the skills and SICKLE CELL that are cost neutral to the NHS. personality to help those of our clients who might be feeling socially isolated, in need of SOCIETY The current exemption and charge remission respite, a hospital visit or home help then arrangements are intended to ensure that no contact us! Volunteers will be reimbursed an In a Service of one need be deterred from obtaining any hourly rate of expenses. All volunteers will also Remembrance & necessary medication on financial grounds. need to undergo a Criminal Records Bureau When the medical exemptions were (CRB) check. Thanksgiving introduced, 58 per cent of NHS prescription items attracted a charge. Now, fewer than 14 VENUE per cent of prescriptions dispensed in the community in England attract a charge. As a The Parish Church All Aouls result, many people with medical conditions 3 Station Road, Harlesden not on the exempt list already get free prescriptions on age or low income grounds. DATE & TIME People who have to pay can seek help under Sunday 6th July 2008 the NHS Low Income Scheme, which provides 3.00pm help with health costs on an income-related For more information or to register your interest, basis. The level of help available is based on a please contact Iyamide Thomas on 07841 558611 comparison between a person's income and or e-mail [email protected]. For further details please contact us on 020 8961 7795 or email [email protected]

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JEANS FOR GENES 2007: IN SUMMARY

In summary - our membership and support Genes Day is on Friday, 3 October. I do hope base did not engage as much as we would many more of you will get involved in this fund- have wished in this annual fun way of raising raising campaign that is helping to conduct money to support children and families research on genetic conditions and providing affected by genetic disorders. support services for the many individuals and Iyamide with Jeans for Genes media families affected. volunteers Ade, Pamela, Jacqueline This was disappointing especially because the and Jennifer Sickle Cell Society was a Jeans for Genes guest Please visit www.jeansforgenes.com for further charity in 2007, with the sickle cell community information. set to benefit directly via the Society’s Regional Care Volunteer Project that is being funded. Iyamide Thomas REGIONAL CARE ADVISOR 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 Children’s Hospital), Matty Asante–Owusu (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 Annie McDonald , a service user set to Hospital, Aintree), Olivia Olujohungbe benefit from the J4G volunteer project (Greenbank School, Cheshire), Yvonne Peart and her son and carer Miguel Volunteer Stella Ochi joins Society staff (Brent PCT), Caroline Rowe (Islington PCT), Iyamide and Comfort in the 'denimised' fun 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 Esther Ifinwa (Specialist Nurse Counsellor) Staff at NCEPOD got ‘denimised’ on stories that were featured on the Jeans for puts an ethnic slant to her jeans as she Jeans for Genes Day Genes website and school packs sent to gives a talk to Greenwich PCT colleagues thousands of schools. This year’s Jeans for

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CONGRATULATIONS SICKLE CELL SOCIETY AWARDS History, Criteria & Categories: To Professor Elizabeth N Anionwu CBE, FRCN, a The Society traditionally recognises exemplary excellence, dedication, commitment founder member of the Sickle Cell Society, for becoming a grandmother! Granddaughter and achievements that are of inspirational nature with reference to the sickle cell Rhianne Elizabeth was safely born on 04/02/08. cause and hence publicly acknowledges these during our Annual General Meeting. In Both mother and baby are doing well. 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 1990’s. 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 1990’s. 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 EXPAND YOUR recognition of the nominee’s outstanding contribution to the cause of the Society. It would KNOWLEDGE WITH usually be presented to someone of community standing. THE SUB-CATEGORY OF THIS LATTER AWARD INCLUDES THOSE THE SICKLE CELL APPOINTED BY THE BOARD OF TRUSTEES TO THE RANKS OF SOCIETY’S TRAINING 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 PROGRAMME activities of the Society (as Patrons)

The Society has now launched its sickle cell OTHER AWARDS INCLUDE: training programme which will be aimed at V) The NOVARTIS SCHOLARSHIP giving people the opportunity to obtain an First awarded in 2006, this cash and certificate award seeks to recognise and encourage in-depth knowledge of sickle cell disease, excellence in academic endeavour by a person(s) suffering from sickle cell disease. its effects and how to cope on a day to day basis. VI) OUTSTANDING ACHIEVEMENT AWARD This certificate is awarded to either an individual or a group, and recognises achievement in As part of the Society’s continued effort to any field of relevance to the sickle cell cause, including fundraising. address the needs of those living with sickle cell disease, we have designed a specific training VII) VOLUNTEER OF THE YEAR programme, which consists of a 1 day training 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 course covering a range of subjects such as administrative work of the Society. What do I know about sickle cell disorders (quiz), overview of sickle cell disease, chronic VIII) STAFF MEMBER OF THE YEAR disease management – maintaining the The Chief Executive presents this certificate to the colleague s/he judges to have made steady state in sickle cell disease, acute an exemplary impact on the efficiency and effectiveness of the Society, through team management of sickle cell crisis plus more. This work and documentation. course can be tailored specific to your individual or organisation’s requirements. For PUBLICITY, RECRUITMENT & DECISION PANEL information on how to enrol on the course please contact our office on 020 8961 7795.. 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 Sickle cell disorder is the most common respective awards as described above. inherited blood disorder in the country so we need to make sure everyone in our community The decision of the panel is subject to ratification by the Board. is aware of how to treat and manage the condition in order to understand and help PRESENTATION those who are affected by it. The formal presentation is made at the AGM, including a Citation Certificate and possibly a trophy accompanied by a token cash award.

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REGIONAL CARE UPDATE LONDON NORTH EAST REGION

Haemoglobinapathy Specialist Nurse now in gave a talk at a Primary School in post; her name is Christine Williams, and she is Westminster, one mum came along and based at Cedar Centre at King George talked about her experiences with twin Hospital. A warm welcome and congratulations daughters who have the condition. Later that to you Christine! We wish her all the best for a same day we rushed to Waterloo with Comfort Ndive well deserved promotion. I am sure we will all my colleague to shake the bucket – What REGIONAL CARE ADVISOR - LONDON NORTH EAST benefit from her exceptional clinical a fun day; though I was a bit disappointed knowledge and skills which have been that people were not very generous with invaluable having worked with people living their donations. This is a good opportunity to give my thoughts with sickle cell disease for a long time. and feedback about working in this region. I I also attended the Black History Month at am proud to say that 2007/8 has been a very October which is Black History month was Queens Theatre -Havering, with Cecilia exciting year: more and more of you are packed jammed with invitations from Shoetan (Coordinator – Barking & Dagenham seeking information about the condition as schools/colleges, organisations and associations and Havering Sickle Cell Support Group); we well as enquiring about services out there that for RCAs to attend various events to give talks or had a stall, giving out information and talking to would benefit you. This has come about as a display a stall on sickle cell. One such event people who attended the event. result of the volume of phone calls I have was at Petchey Academy (Hackney) where I received, people from the black community attended with Mrs C Dickson (Community A BIG THANK YOU to Rotary Club of Tottenham are feeling comfortable to talk about sickle Development Officer -Hackney Sickle Cell and & Wood Green members who gave their time cell; and as more people particularly Thalassaemia Centre). Some pupils have to fundraise for the Society. On a bitterly cold those living with the condition as well as relatives or know of friends living with sickle cell; evening in December, we knocked from door families/parents with family members/children with others it was their first time hearing about –to-door and people donated generously. who have the disease are becoming the disease as the class was mixed (black and Sitting inside the beautifully decorated carriage increasingly educated and less stigmatised, white pupils) with all its glittering Christmas lights was Father they are able to talk freely about the condition. Christmas. We also had Christmas carols This is a great achievement on the part of blaring as we drove along the streets. It was Regional Care Advisors’ outreach work through such a spectacular sight! My colleague, its health promotion and educational talks, “Keep up the Iyamide and I were privileged to be invited as raising awareness, and word is now filtering guests with other voluntary organisations to through to the public and the community. I good work ...” attend the Rotary Club Dinner held in February have to say that all the RCA’s are so committed where we were presented with a cheque of the in the work they do and it’s great to see that Black Police Association money raised. our hard work is now paying off. Comfort Ndive I was very delighted when I received a Mobile: 07841 558 612 beautiful letter from Lesley, aged 10 from Email: [email protected] Hackney. It was very kind and thoughtful of him I was at the Black Police Association Event at to do this; I read his letter over and over again; the Royal Festival Hall, Waterloo with a member my colleagues at work enjoyed reading it too. of the Sickle Cell Society and her daughter; we SUPPORT GROUP Honestly, what is fantastic about this letter is the displayed leaflets, posters and other literature amount of time he put in just to let me know materials on sickle cell and the screening NEWS about his experiences, his sister and how much programme. This is a very popular event within he loved his mum for being there for him. the black community and it was well attended. Please, read his letter on the Users Page. I hope Some people were kind to make a donation Waltham Forest Support Group has a co- parents/carers would encourage their and many acknowledged the good work the ordinator in post; her name is Juliette Otteng; children/young people to write on any topic Society is doing in the community “Keep up the contact them at 471 High Road, Leyton that interests them. Good Work” they said. London E10 5EL; Tel: 0208 9881703. The Centre now has a Saturday school for children Good News! Barking & Dagenham, Havering I was also involved in Jeans 4Genes Day, who suffer from Sickle Cell and Thalassaemia and Redbridge has a permanent Senior October 5th. What a busy day that was! I and miss school due to frequent crises. Classes

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run from 10.am to 1.00pm; Subjects: Maths and English Key Stage 1-4; Ages 5-16. LONDON

In March 2008 Tower Hamlets Sickle Cell Support Group held a workshop on Women in SOUTH Action (Promoting self-employment amongst women in Tower Hamlets); I was invited to attend as a Special Remembrance and REGION 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 I am so happy to be doing this year’s first children, and gracious lady. I appreciate the South London update in this revamped, fact that I was asked to say a few words about new-look News Review. I hope our readers Iyamide Thomas Zainab, being a new member of the support like it? It will now be easy to differentiate REGIONAL CARE ADVISOR - LONDON SOUTH group. I met Zainab at Tower Hamlets Support between one issue and the next, so no Group conference held at the end of August more excuses! last year. Initially, when you see her you would the way their care is delivered. Through Direct not believe that she suffers with sickle cell, very In our last issue (Autumn 2007) I asked Payments and Individual Budgets for bubbly, always smiling, and generous, always whether the Society, through its Regional example, they will have financial control of willing to share her experiences with others, and Care Advisors’ Programme was having an what social care services are purchased, raising awareness about the condition. I would impact on service users’ health, and gave a when and from whom, giving service users dearly miss her. Our heart felt condolences to preview of a forthcoming Health Impact greater flexibility. With sickle cell disorder the family. May her soul Rest in Peace. Assessment (HIA) report that has evaluated being such an episodic condition such this programme. This report is now out. Hard flexibility enables individuals to tailor their copies will be sent to all who participated in social care support according to their COMING SOON! the HIA workshops, but most importantly they individual need rather than having pre- will also go to health service commissioners arranged routine support. Local Authorities as we try to secure the Regional Care are keen to promote this self-directed care, East London Sickle Cell ‘Road Show’ for all Advisors’ Programme’s sustainability. We will so much that Lambeth Council is establishing support groups in the region, sickle cell and also post the report on our web-site. As a new post of ‘Director of Personalising thalassaemia health professionals, voluntary service users, providers or supporters, you Services’! In addition, London Councils and community groups will take place on 6th can help secure the Regional Care Advisor recently awarded grants to several September 2008. So watch this space! (RCA) post in your area by lobbying your MP organizations to ‘support advocacy schemes and by completing the user / provider and legal advice to promote take-up of satisfaction surveys we are conducting Direct Payments and benefit entitlements for (contact your local RCA for a sample lobby people with disabilities and carers’. I am letter and survey form). Only a concerted pleased to say that the Sickle Cell Society was effort by all will give sickle cell the resources one such organization and in the coming it needs! months will be progressing this work.

ADULT SOCIAL CARE SERVICES Now for the more exciting stuff that has ARE CHANGING been happening around my region:

Social care services (i.e. what ‘workers’ do for people who need support, e.g. home-help) PIPPA’S ‘RETIREMENT’ are changing and many local authorities now only fund social care for those deemed to be with ‘critical’ need. This is having a direct On 21 December 2007, Pippa Gillham, impact on the quality of life of people living Specialist Nurse Counsellor at the South West with sickle cell disorder who are very often not London Sickle Cell and Thalassaemia Service assessed as having ‘critical’ need. In officially retired. Pippa who set up the sickle addition, service provision is moving towards cell and thalassaemia service in Reading ‘self-directed’ care and the new buzz words worked there for ten years before joining are ‘Individual Budgets’ and ‘independent Wandsworth PCT. She has been a lovely Stella Ochi and Comfort Ndive on Jeans living’. Basically what this means is that colleague to work with and this was reflected for Genes Day 2007 people in need of social care support are in the speeches given by those present such being given more choice and control over as Collis Rochester- Peart (Service Manager,

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myths surrounding the condition. It is targeted UPDATE FROM mainly (but not exclusively) at the West African community in whom the gene for sickle cell is YOUNG PEOPLE’S most prevalent. The script for the drama has been finalized and auditions for the cast have EXPERT PATIENTS taken place. I have no doubt that when the ‘Family Legacy’ is released (in the autumn) it will PROGRAMME (EPP) be this year’s ‘Nollywood’ best-seller!

Two Young People’s EPP Trainers from my region, IS THIS THE NEXT Ade Aluko and William Kamara have finally been able to conduct a series of young L-R: Marilyn Husbands (Administrator), RICHARD BRANSON? Corral Rose (Specialist Nurse Counsellor), people’s workshops! These were recently Pippa Gillham and Stephanie Sulaiman commissioned by the Newham Sickle Cell and Thalassaemia Centre and according to the young trainers and feedback from EPP, the SE London SC &T Centre), Stephanie Sulaiman workshops went very well. The Young EPP (Service Co-ordinator, SW London SC & T workshops are designed to support young Service), several service users and little me. people living with a long-term health condition We wish Pippa best of luck in her retirement to increase their self confidence, better and the good news is she will temporarily be manage their condition and improve their back at the SW London SC & T Service on a quality of life. As a result of feedback from the part-time basis! workshops in Newham, the EPP Young People’s training manual is being revised to include pain management and hospital stays for young HO, HO, HO! people with sickle cell. The EPP was also recently awarded a 3-year grant to further Could Emmanuel Wilkey (above) be the next extend the Young EPP and this will cover training Richard Branson? A while back I helped Yes, I was able to attend the Croydon Sickle for new volunteers, and further workshops. Emmanuel source funds for a portable Cell Support Group Christmas party on 8 massage bed so he could set up a massage December last year, where on display were business. Well, Emmanuel is now also a trained pottery items the children had painted during driving instructor and is setting up his own a summer workshop. I would like to thank Mr driving school! Emmanuel has sickle cell Tunde Adenibi and Ms Louise Jeffreys for their anaemia and is sometimes hospitalized, so kind donations to three of my support groups running his own businesses gives him the (Croydon, Greenwich, Lambeth) some of flexibility he needs. Emmanuel has pledged to which went towards buying the children be more sympathetic towards any students Christmas presents. 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! Young Trainers- William Kamara and Ade Aluko Emmanuel Wilkey Mobile: 07960 717 665 or 0800 118 2920 NHS SCREENING www.emanualsdrivingschool.co.uk DVD - COMING SOON RAISING AWARENESS OF SICKLE CELL One very interesting piece of work I have been doing in the last year is giving specialist advice DISORDER and collaborating with Woman-Being Concern, an organization in South London which has been commissioned by the NHS Screening As Regional Care Advisors, raising awareness of Croydon Sickle Cell & Thalassaemia Programme to produce a drama on DVD. This sickle cell disorder, the screening programme Support Group Xmas Party '07 drama will help raise awareness of screening and the work of the Society is embodied in the for sickle cell as well as some of the issues and outreach work that we do. I recently participated

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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 LONDON our Regional Care Volunteers Project. Many listened attentively as I talked about the genetic nature of sickle cell and the need for pre- NORTH conception screening. A group of young men asked many pertinent questions and hopefully left empowered to make informed choices. WEST 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 REGION joked “my immune system is hard-core”. As you can see the Society’s Regional Care Advisors still have their work cut out for them! Dinah Walker Since the last newsletter edition, I have COMMUNITY SUPPORT OFFICER Iyamide Thomas had the opportunity to meet and work with Mobile: 07841 558 611 many service users and service providers Email: [email protected] alike within my region and it has been a great pleasure. COMING SOON I am being kept very busy since starting in “I have my ON CD / DVD May, with the support and advocacy work I have been involved with. My biggest fingers in “FEEL MY PAIN” challenges have come with the service users THE NEW SONG THAT WILL needing assistance with housing needs and every pot...” RAISE AWARENESS OF disability living allowance applications. Since SICKLE CELL DISORDER the last newsletter I have worked on 10 Disability Living Allowance applications with 4 successful outcomes to date, with four still or would like to apply for one of these funds pending a decision, and 2 in which I have they can contact me and I would be happy worked on remotely. to answer any questions or send them out an application form. With the many activities that the Society has worked on over the last few months, I have had Unfortunately this years Christmas present my fingers in every pot, helping to write the appeal was not very successful, and in our Radio 4 appeal script, shaking a bucket at region only a small selection of gifts were Paddington station with Kalpna for Jeans for donated. However, we are thankful for Genes Campaign and now working on setting everything that was received and we up the volunteer project we received funding especially extend a big thank you to Brent When 29 year old Adebisi Aluko (also for, and supporting Kalpna on the London Active Citizen’s Project for their support with this known as the artist A.D.E- Africans Did Councils funding bid. appeal, the presents were distributed Entertain) asked his employer if he could accordingly and we are hoping to have better go home because he was having a I have probably met some of you whilst doing luck this year. sickle cell crisis, the response was that if talks and conducting health information stalls, he did so he should not bother coming and I would like to extend many thanks for all We still have the whole year ahead of us back. Like so many, Ade’s employer was the invitations that I received, keep them including our awareness season, the AGM, unaware of the effects of sickle cell coming, these events brings awareness and Church service and Black History month. I am disorder or the painful crises he much needed advice to individuals and always looking for volunteers, to further my experienced. Despite his pain Ade groups who if it wasn’t for these types of reach within the Northwest London region, your stayed at his desk, put pen to paper and events would continue to walk around in a skills what ever they are, are always wrote the following: “only God can feel state of ignorance with regards to the issues appreciated. my pain, wondering why I’m so afraid, surrounding sickle cell. that this pain may take me away to a I would like to finish by extending heart felt best place I rather not say”. Thus began the Since November I have taken over the wishes to Mrs Falconer who celebrated her 75th lyrics to ‘Feel my Pain’, a song Ade hopes administration duties of the Ralma Faulkner Birthday, earlier this year. will help raise public and professional Welfare Fund and The Bryan Jones awareness about sickle cell disorder. Educational Fund from Miriam, which has kept Dinah Walker me on my toes. If any one has any enquiries, COMMUNITY SUPPORT OFFICER

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MANCHESTER & LIVERPOOL REGION

sickle cell and the uncertainty of their health and times. In all that, she with veteran tenacity the future if only for the day, simply bonding pressed through life even after suffering a major together leaving an unforgettable pleasurable stroke in her mid teens. Maxine passed away on experience in their mind. the 18th November 2007 at 27 years of age after suffering yet another stroke which then Anthony Mason The Manchester Sickle Cell Support Group held ensued an array of other complications. REGIONAL CARE ADVISOR 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 THE LATE I consider it a pleasure to be able to present my Liz Aniteye who had capably carried and kept quarterly update, snapshot of activities from the alight the torch of the presence of the Support MAXINE MINOTT North West region Manchester /Liverpool, high Group in the community. More recently, lighting another area of the national profile of Elizabeth and the team had made great the Society. It has been a very productive strides in working with the PCT to see the reality period, although filled with challenges however of a Community Link Worker manifesting into still proving to be immensely rewarding. Being the reality of a post. This vision birthed by part of a team who advocate on behalf of Elizabeth is now in the horizons of being a service users cannot be summarized by words. tangible post.

I have watched the Parents’ Power Group (this is Mr Hartley Hanley takes up the mantle as being a prong of the Support Group) grow and go from the Chair. He is wished every success as he is strength to strength, Facilitated by Carol Douglas insatiably optimistic for the future. The Patron centre counsellor which is led by Mrs Busola and remains as Dr Ade Olujohungbe; Yvonne the team. I must commend them for their vigour, MacCarthy continues her role as the treasurer, motivation and their vision as a group. The group both who are committed members of the group. has been facilitated and stimulated by Carol Douglas, one of the centre’s Counsellors. Within this recent period, the group have been on a trip Maxine left behind a daughter Leah aged 8 to Camelot Theme Park and Chester Zoo which whom she dearly loved, mother Linda, father, a went very well and the attendance support was brother and four sisters as well as a loving positively remarkable. The children enjoyed the extended family not to mention a multitude of day immensely from the transit to the adventure friends and boyfriend Daniel. I am grateful that theme park, they expressed delight of spending I was afforded the opportunity to be able to the day going on rides, playing on games and support Maxine partly through her life’s journey. not forgetting the taste of candy floss, sweets, It can be honestly said that Maxine made an hotdogs and burgers. In essence they and their indelible mark on the memories of many and parents/carers basically absorbed the entire will not be forgotten. atmosphere of the day, everyone letting their hair It is always saddening when one loses a loved down forgetting about the issues surrounding one. That said, given the permission by the Clients like Maxine keeps one’s appetite for the family, I must make mention of the loss of a dear job on fire, I believe that it is pertinent to say at client of mine Miss Maxine Minott. I commend this point that our BME communities need to her memory as one who was a fighter who with increase the uptake of giving blood in order to the short time on this earth faced up to many help our service users in the event of much obstacles in life. She courageously braced needed transfusions and/or operations. This through them the best way she knew how. As need is not only for those with sickle cell but one who lives with the condition, I recognised also for the wider community. Factual data that at times she was poorly understood yet up dictates that BME blood has certain antibodies and above all, Maxine loved to smile through in it that when it comes to cross matching for circumstances. She had a memorable transfusion, the closer the match the better one character and quite often tested the system at is able to significantly reduce complications.

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SERVICE USER NEWS HEALTH CENTRE IN LIVERPOOL THE ‘RARE

The centre for Inherited Blood Disorders Abercromby Health Centre in Liverpool was GEMS’ OF 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 NIGERIA 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 My name is Airende Collins and I am 23 years significant attendance to the launch and the old from Edo State, Nigeria. I have three opening remarks were given by Lord Aaron siblings and I am the first child. My younger Airende Collins Ward –Atherton of Witley & Hurcott. 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 depression and anxiety and leaves us Rare Management and also an Advanced Gems demoralized and helpless. The Sickle Cell Diploma in Telecommunications Systems from Foundation here in Nigeria has done quite a lot City and Guilds London via correspondence. but they cannot or have not been able to meet Presently, I develop web applications and the social and psychological needs of Rare have just got admission to study medicine at Gems, which is why I started my network. I have the University of Benin. been able to touch many lives because people feel so happy to talk to someone that feels the I am living with sickle cell anaemia (HbSS) and I same pain they feel. I have come this far have an NGO. The name of the NGO is Rare because I have developed a positive attitude Gem Initiative. The organization is dedicated towards myself and that’s the first step anyone towards improving the lives of people living with who wants to overcome this struggle has to take. sickle cell, people who like me are ‘Rare Gems’. I am a Christian and I believe in miracles, but Robert Gregory Chair of the Alkaptonuria The Rare Gem concept is a deliberate attempt the greatest form of healing is when ones mind Society and Dorothy - Zack-Williams Centre to eradicate stigmatization that people living with is healed and that is why I am doing all that I am Manager of the Sickle Cell and sickle cell usually experience. Growing up for me doing. We have stopped using the name Thalassaemia Centre Abercromby Liverpool was hell. I was always in and out of hospital. I was ‘sickler’ and instead call ourselves Rare Gems. treated badly at school. I was called a lot of This initiative was supported by funding from the names. Some would call me "curry eyes" We just concluded a survey on sickle cell Community Chest Fund [PCT], Robert Gregory because my eyes were always yellow. I was also patients and we discovered that most people Chair from The Alkaptonuria Society, Anthony called "how bodi" because I was never in school living with sickle cell do not feel comfortable Mason [The Sickle Cell Society] and the tireless and when I got back that’s what I would hear when addressed as sicklers. The origin of the work of service users and PCT staff. from everybody. At home, my dad blamed my name ‘sickler’ bothers me a lot. Where did it mother that she gave me sickle cell as nobody come from? Was it just a harmless word from a For more information please logon to had sickle cell in his family. It’s not like he is lazy doctor that needed something cute to call www.ibdcabercromby.co.uk illiterate, after all he is a lawyer! However, he was his patients or was it from somewhere else? I am ignorant. On the other hand, my mum said I was sure a Rare Gem did not come up with the word Manchester/Liverpool evil and that I was sent to drain her finances ‘sickler’ but rather it was a ‘gift’ given to us from Tel: 07841 558 610 because my crises would always come when people who had no need or desire to see that Email: [email protected] she collected her salary. It was so bad that I we felt good about ourselves or empowered in always kept to myself and was never allowed to anyway. I am sure you will agree with me that play with my friends. My mum said I was not a language can discriminate and language can normal child. I was also told I would die at 21 and hurt. Language enslaves ones spirit. When we so I grew up in fear. Several other Rare Gems call pass down useless language such as the use of and tell me similar stories. I am writing a book sickler to describe people living with sickle cell, called "Doctors Lied to me" where I will describe we do very little to inspire growth or change. more Rare Gem experiences. Degrading an HbSS individual’s dignity holds back his/her spirit to overcome the challenges The unpredictability of a painful crisis is a major of the disorder. For this reason, I have refused to source of distress and usually presents be called a sickler. I would prefer to be psychological symptoms which include addressed as a ‘Rare Gem’. Rare Gem in the

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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 KELSEY varied clinical manifestation of the disorder.

I hear ‘sickler’ the most when I am in pain in an LECKY 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, LETTER to breathe another breath and there goes this word whispered or just shared over my body, for example:

Dr Adebayo: “What is the problem”? Kelsey Lecky - 10yrs 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? I’m tired, very tired”. It’s just not right to take away someone's identity and replace it with “she has something else at your leisure, just because it’s convenient. Just think how encouraging it would suffered for be to hear: me and Dr Adebayo: “What is the problem”? my sister...” 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? Don’t 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 can’t wait to get back home and finish that website”.

Isn’t 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: [email protected]

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SERVICE PROVIDER NEWS ANTENATAL & NEWBORN SCREENING PROGRAMMES

Local MP Clare Short (Birmingham Ladywood) having children. It’s just a simple blood test, joined staff and patients at Birmingham but the results could help you plan for your Acute Sickle Cell and Thalassaemia Centre family’s future.” on Friday 7th December 2007. Ms Short met staff and patients to hear first hand about Dr Allison Streetly, Programme Director for the living with the diseases and had a chance to Sickle Cell and Thalassaemia Screening find out more about both the diseases and Programme comments: SICKLE CELL the importance of being tested. “We have come a long way since the WHAT YOU NEED TO KNOW... Sickle cell is one of the most commonly Programme was started in 2001. Newborn inherited genetic diseases in England – screening for sickle cell is now offered to all FACT around 12,500 people have the disease and babies born in England and we are well on our Sickle cell and thalassaemia are serious there are an estimated 240,000 carriers. way to offering antenatal screening to all inherited blood diseases pregnant women in England too. This is a huge Around 700 people are affected by achievement by the NHS and its staff but there FACT thalassaemia major with an estimated is still much to be done to increase awareness All pregnant women in England should 214,000 carriers. and improve understanding of the diseases. ideally be offered screening by 8-10 weeks in pregnancy. Ask your GP or MS SHORT SAID: “Sickle cell and thalassaemia largely affect midwife for details “I was delighted to come and meet the team black and minority ethnic groups, but and patients at the Centre. It’s great to know because they are genetic, they can in fact, FACT there are so many dedicated people affect anyone. England is now a diverse and If you carry the gene of sickle cell or involved in the care of people affected by culturally very rich society, and so the thalassaemia you will be healthy, but you these diseases. Despite their efforts, susceptibility of a person to have these could pass the disorder to your baby awareness of sickle cell and thalassaemia is diseases is more difficult to predict. still low. It’s important to be tested for the Everyone needs to consider screening for FACT diseases before you start thinking about these diseases.” Screening is important for men too. Babies inherit the diseases from both their fathers and mothers

Clare Short MP (centre) with patients from the Centre

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EDUCATION AND YOUNG PEOPLE WITH SICKLE CELL DISORDERS (SCD): UPDATE JANUARY 2008

The Sickle Cell Society is continuing to be active Table 1: When lessons missed how much are children with sickle cell helped to catch up? in its support for social research looking at the How much have you been helped to catch Numbers and percentages of children with educational needs and experiences of young up lessons missed on a scale of 0 to 100 sickle cell disorder saying this people with sickle cell disorders. The study is being led by Simon Dyson at De Montfort Not helped to catch up at all 45 (20%) University, Leicester. The Sickle Cell Society, Helped to catch up about 25% of the way 77(34%) Helped to catch up about 50% of the way 61(27%) together with other sickle cell organizations, is Helped to catch up about 75% of the way 30(13%) represented on the Advisory Group for this Helped to catch up all the way (100%) 12(5%) project. The project is funded by the government’s Economic and Social Research Table 2: How do children with sickle cell say they are treated at school? Council, which funds public research in Reported Experience at School Percentage of children with sickle cell disciplines such as sociology and social policy. disorder saying this had happened to them

By the beginning of 2008 we had collected Prevented from taking a drink in class 58% questionnaires from 250 young people (aged 5- Prevented from going to the toilet 47% Made to do exercise that was unsuitable 38% 25 years old) with a sickle cell disorder. The results Called lazy when feeling tired 35% so far suggest that young people living with a sickle cell disorder are faced with considerable Table 3: What do children with sickle cell say starts a painful crisis at school? challenges in working their way through school. Reported Trigger for a Sickle Cell Crisis Percentage of children with sickle cell disorder saying this had happened to them For example, the children with sickle cell told us that they missed an average of 17 days of School was too hot or too cold 51% school a year because of illness associated with Being upset by a teacher 37% Being upset by a pupil 30% their sickle cell. But this was the average. In a few The school furniture 24% 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 We then asked children what their experiences The next stage of the research is to interview of the school year. However, the most frequently had been with regard to other issues at school. 50 young people with sickle cell about their reported period of time absent from school for Anyone who has worked in the area of sickle cell life at school. We are especially interested in each absence was two days. It seems that a will have heard stories of children not being what young people think are the advantages great deal of school can be missed, but that if allowed to take drinks in class (important for and disadvantages of telling the school that the time off is in a series of short absences, then keeping hydration up and preventing crises); of they have sickle cell. any support systems may not be triggered not being allowed to go to the toilet (children with before the child is back at school. sickle cell cannot concentrate urine readily so The final stage of the research is to try to influence need to pass urine more frequently); of being policy on what goes on in schools. During 2009, The young people were also asked to comment made to do unsuitable exercise (cross-country we aim to hold a series of regional workshops in on how much they felt they were helped to runs in the cold rain could precipitate a crisis), different parts of the country, to which all known catch up, placing themselves somewhere and being labelled ‘lazy’ (when actually tired participants in the research would be invited. between 0% (not helped to catch up at all) from the anaemia). But what we have not had National and local self-help groups, sickle cell through to 100% (helped to catch up evidence about before is how typical and specialist counsellors, teachers and local completely). As Table 1 shows, only a small widespread these experiences are. education authority advisors would also be minority, around five percent thought they had invited. Such seminars would (i) share the results been helped to catch up completely. Ninety-five Another major area we asked about was what of the research, and (ii) through workshops enable percent therefore thought they had not been factors if any had triggered a sickle cell crisis when parents and children to tell us what should be in helped to fully catch up. Most worryingly, around at school. Again the responses suggest that bad an education policy for people with SCD. 20% thought they had not been helped to catch experiences are common to many young up lessons they had missed at all. people and are by no means the exception. Dr Simon Dyson

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SICKLE CELL PATIENT CONFERENCE AT TRANSITION: MANCHESTER MOVING ON WELL ROYAL INFIRMARY

Adults and children with sickle cell disease were help ensure that the young person and their invited along with friends and families to attend family are better prepared for the move to a patient conference on September 29th adult care and that the adult care team has 2007. The aim of the conference was 2 fold. been involved in planning for the transfer. 1. Provision of a forum in which patients and IVAN LEWIS, CARE SERVICES their families could participate in decision MINISTER, SAID: making. (DOH Choices matters, 2007-08, “Young people and their families tell us of the putting patients in control) uncertainty they face about their future support 2. A platform to inform patients of the latest when they reach 18 years of age. All too often, developments for sickle cell disease and they feel unsupported which is why we have the opportunity for patients and their made improving the transition experience of families to ask the professionals questions in young people a Government priority. a less formal setting than hospital or clinic.

Health and social care professionals have an The conference was a huge success with 96% important role in working with other agencies to of participants requesting another conference support young people with the most complex next year. health needs through the transition period. This good practice guide offers suggestions on how this can be done.” A good practice guide for health professionals and their partners on transition planning for young people with complex health needs or a disability. ““Young people and

In March, Ivan Lewis, Care Services Minister their families tell us of announced the publication of good practice the uncertainty they face guidance for health professionals and their partners on the transition planning for young about their future support people moving into adulthood. Topics included blood safety issues, stroke when they reach 18 years in sickle disease and prevention/ Transition from children’s to adult health services detection with the aid of Doppler scanning, of age ...” men’s issues, transition to adult services and is recognised as an important issue. More the introduction of the PISCES study 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 ANDREW ADONIS, SCHOOLS services and often the young person needs care MINISTER SAID: from a number of different specialities. The coordination of care which they have received “Transition is recognised as an area for in children’s services all too often fades away improvement in Aiming high for disabled when they transfer to adult care. Young people children and we are investing £19m over the with a neuro-disability such as cerebral palsy or [next] CSR period to initiate and develop a muscular dystrophy are the least well served transition support programme. This good when the time comes to move on to adult care. practice guide for health professionals will be an important contribution to that programme.” Guest speakers came from London, Liverpool and Manchester. The Department of Health and Department for Children, Schools and Families have now The guide can be accessed via: published a good practice guide for health www.everychildmatters.gov.uk/_files/ Kath Stevenson professionals and their partners. The guide will TransitionGuide.pdf SPECIALIST NURSE - MANCHESTER ROYAL INFIRMARY

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RESEARCH NEWS PRIMARY STROKE PREVENTION IN SICKLE CELL DISEASE

BABA INUSA AND SOUNDRIE PADAYACHEE GUY’S AND ST THOMAS NHS FOUNDATION TRUST

The need to identify children who would benefit which intend to start screening children with

Figure 2: Transcranial Doppler imaging from blood transfusion led to the multi-centre sickle cell disease for stroke risk should ensure probe in use study of 1, 934 children with sickle cell anaemia that their TCD equipment and protocols in the US (STOP trial reference). This study compare with those used in the STOP trial. selected children with an abnormal TCD scan. (Transcranial Doppler or TCD scan is The decision to commence a child on chronic increasingly recommended for stroke Transcranial Doppler ultrasound uses painless blood transfusion therapy cannot be taken prevention, and so we invited the team at ultrasound to detect abnormal increases in lightly and should be made only after careful ‘Tommy’s’ to give us a low down. Incidentally, blood velocity in the blood vessels of the brain. consideration of the risks and benefits. The the Sickle Cell & Young Stroke Survivors Support The TCD technique is completely non-invasive, parent / carer should be involved in the Group (www.scyss.org) on Old Kent Road, does not involve any injections or radiation and management decision and this should be led London, offers support for children who have is therefore an ideal surveillance tool. To prevent by a clinician who specializes in the care of suffered a stroke) stroke, transfusion proved to be so effective that children with sickle cell disease. The clinician the study was halted 16 months earlier than should have knowledge of the STOP trial Stroke is one of the most devastating planned. In September 1997 the National protocol, its results, and be experienced in the complications in sickle cell disease (1, 2). Institute of Health, alerted doctors in the USA that safe delivery of blood products and the Stroke is defined as an acute neurological the approach used in the STOP trial (as it was management of transfusion complications. A event in the presence of a correlating brain called) was effective in stroke prevention and number of cautions must be considered: lesion as shown on MRI, CT or other imaging should be offered to sickle cell anaemia studies. This commonly presents with the loss patients. The benefit of this programme has 1. Early closure of the STOP trial limits the data or reduction in function of limb or sensory been validated in follow up community studies available on long-term risks and benefits in organs like vision. Once this occurs, full in California and elsewhere (refs). the two groups. recovery of function and skills may be compromised. Patients are therefore left with DISCUSSION 2. Future TCD screening must be comparable long term consequences such as to STOP trial TCD equipment and protocols. educational and behavioural impairments, The application of this recommendation is and limitations in daily self help skills (2). gradually being introduced in major sickle cell 3. Transfusion decision should be made in Known risk factors for overt stroke include treatment centres in the USA and is now consultation with a physician experienced increased frequency of acute chest available in the UK. Increasingly over the last 4 in transfusions in children with sickle cell syndrome (such as pneumonia), high blood years it is becoming standard care in the UK and disease and management of iron overload. pressure and abnormal Transcranial Doppler recent reports have shown that the rate of (TCD) results (1, 5-7). In sickle cell disease abnormal studies may be about 5% in Common questions facing patients and their stroke tends to recur, and in the absence of a unselected children with sickle cell anaemia. As families are the duration of transfusion, the strict blood transfusion programme, up to 6 the service becomes established over the years risk of transfusion reactions and the overall out of 10 patients will have a further stroke the finding of abnormal studies will fall but benefit for the child. There is yet no clear within 24 months of the first event. The use of nevertheless screening will be critical to patient indication as to the optimum duration for blood transfusion is beneficial in reducing the management. The recommendation from the blood transfusion. The second STOP study risk of stroke recurrence however this occurs in original group was to undertake the studies in which tried to clarify this point found that the background of existing damage. children from 2 to 16 years and to offer this every even those where TCD had normalised 6 to 9 months, even though annual studies tend reverted to high risk when the transfusion was Children with sickle cell anaemia are to be the pattern in most centres. Our practice stopped (reference). It is nonetheless reported to be almost 300 times more has been in line with this recommendation since believed that the risk may reduce as the likely to develop a stroke when compared 2003. A number of questions arise to ensure that children become adults. There is no clear to non sickle cell children (6, 7). This is the results obtained in accordance with the recommendation on how long transfusion due to a combination of factors such as original study and are undertaken in a safe, should be given. The risk of iron overload is chronic anaemia, reliable and reproducible manner. Centres one of the most common complications

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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 necessary using other people’s work as a guideline.

3. We have discovered something unusual about the state of patients’ blood between painful crises in the disease’s progress. Figure 1: TCD recordings: Since then we have been considering how to Top trace: NORMAL - ICA & MCA mean velocity <150cm/s, low risk of stroke (<2%), repeat scan redesign the camera and the University of annually. Nottingham is preparing proposals for two Middle trace: CONDITIONAL - ICA or MCA mean velocity 150-179cm/s, intermediate risk of stroke research projects. If the university gets the (7%), repeat scan in 12 weeks. money then new cameras will be built for research into: Sickle Cell Disease, Diabetes, Lower trace: ABNORMAL - ICA or MCA mean velocity >180cm/s, high risk of stroke (10%), repeat diseases of the eye and sepsis in children (a scan in 2 wks unless >200cm/s. Two abnormal studies or one >200cm/s - patient eligible for treatment complication when they are very seriously ill). We could not reapply to the Big Lottery specifically to help patients with Sickle Cell after approximately a year on transfusion. be addressed such as patient compliance Disease until very recently because the This occurs more so in children who receive with screening, treatment and care of the Lottery’s Fund for Research stopped during simple top up transfusions rather than complications of blood transfusion such as 2007 only to be restarted last December. exchange blood transfusion, because the iron chelation therapy and possible system is not able to get rid of the excess iron transfusion reactions. The overall objective is Dr Martin Pickstone acquired from the additional blood to reduce the risk of primary stroke and PROJECT SCIENTIST transfusion. This keeps accumulating until thereby enhance patient quality of life. medication is administered that is capable of removing this excess through urine or stool. EDITOR’S NOTES: The report may at first seem disappointing, A number of issues must be addressed in the but we have proved a couple of important application of this recommendation. This is points apart from the above. Most the basis of the development of current importantly, we have proved that medical standards by the National Screening research can truly be driven by and for Committee of which the Society and the UK patient’s interest. Moreover, lessons from the Forum on Haemoglobin Disorders are well complex collaboration involving a patient represented. These issues include the organisation, the university and hospitals standard of care for those children identified suggests that the SCAD research is a unique through the programme, patient monitoring tripartite that should serve for best practice and patient education. The priority to offer a example in the future of responsive public service that meets the standard of practice health reforms. as recommended maintains patient’s confidence and offers the child the best Figure 3: Transcranial Doppler image of the basal cerebral arteries. outcome. A number of issues will continue to

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WE NEED A NATIONAL REGISTER BONE MARROW FOR HAEMOGLOBIN DISORDERS TRANSPLANT

The history of comprehensive data collection This initiative will move forward this year. A Doctors at Johns Hopkins say Pamela Newton in the UK for Haemoglobin disorders goes patient information leaflet is being is the first adult worldwide to be cured of sickle back many years. However despite the best produced. All those affected will be free to cell disease using an experimental bone efforts of many enthusiastic and committed opt out but we would strongly urge you marrow transplant. individuals we still in the beginning of 2008 do to participate. The group involved in not have reliable information on the most Manchester are sensitive to all the issues of Fifteen months ago, the pain from Pamela basic aspects of these disorders. confidentiality that such data involves and Newton's sickle cell disease was excruciating. have discussed this in detail with the Forum She spent more time in the hospital than in her We do not know how many people in the UK as well as UKTS and the Sickle Cell Society. Capitol Heights apartment. She was on 15 pain have Haemoglobin disorders, neither where pills a day, all heavy narcotics. She was they live nor what type of disease they have got. The first stage is to define what data is bleeding regularly and needed daily needed, produce patient information and transfusions of platelets. Today doctors at Johns This information is vital for the improvement of establish a steering group to oversee the Hopkins Hospital say that Newton is one of the treatment services nationally. process. Patient representatives are included first adults in the world to be cured of sickle cell on the steering group and this stage is disease - and the first using an experimental almost complete. bone marrow transplant that could cure thousands like her who have been told they will “This information is The next stage will be to collect pilot data never get better. vital for the improvement before beginning to collect data nationally .It is hoped that the Department of Health’s of treatment services funding for this process will continue long enough to get it firmly established. nationally ...” ““Doctors at John Hopkins There are several directions in which the initiative could move after its first year, including say Pamela Newton is developing audit and patient management the first adult worldwide This last couple of years have seen red cell systems .We are keen to draw on the interests disorders assume a higher profile amongst and skills of others previously involved in this to be cured of sickle cell those who commission health services and area in making both the initial data collection set health spending priorities .This increased process and any future developments a disease using an profile has come about in part because of success .I would urge you all to support this experimental bone the screening programme and in part initiative. I do believe it is a real step in the right because of the great efforts of organisations direction and will help us to improve the quality marrow transplant ...” such as the UK Thalassaemia Society (UKTS) of service over the years. 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 Word of a breakthrough gives hope to the families with red cell disorders are not roughly 80,000 Americans - and millions equitable and represent a poor investment in around the world - who suffer from this the long term health of these groups. debilitating and usually fatal disease, which is predominant among African-Americans and At present no-one has the information which Hispanics. Bone marrow transplants have been will allow the planning required for the used to treat sickle cell disease for 20 years - improvement of services in future years and but almost all of the 200 cured have been this is now proving to be a major barrier to our children. The treatments - high doses of efforts. I am pleased to say the Department chemicals that knock out the patient's own of Health has identified money to collect marrow before the transplant - are so toxic that basic data on the numbers of patients adults with sickle cell-induced organ damage affected, where they are and what they have would be unlikely to survive them. got .This will be undertaken by a very experienced group from Manchester who run Brodsky said his team's procedure, developed the UK Haemophilia database. www.ukhcdo.org by Dr. Ephraim Fuchs and Dr. Leo Luznik, is less is worth visiting. It is a very professional and Dr Phil Darbyshire toxic. They say they no longer believe they well run set up. CHAIRMAN UK FORUM ON BLOOD DISORDERS have to destroy as much of the patient's

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CAN PAINKILLERS CAUSE PAIN?

Controlling pain is very important for people on my big toe, a nasty pain becomes an who have sickle cell anaemia. You will note overwhelming pain. There is a technical word that I used the word painkiller in the title but for this; hyperalgesia and you can see that controlling pain in the first sentence. When I there are many scientific articles about this if first started caring for people with sickle cell, you enter ”hyperalgesia sickle” into Google I genuinely thought that I could do away with scholar. Google scholar is the more scientific their pain if only I got the dose of painkiller cousin to the ordinary Google program. You right. Now, I know a little better and will even see that there has been some recent recognise that the best I will be able to do research involving a drug called naloxone in for many people is to reduce the pain and mice that have been genetically engineered marrow as they once did - so they administer help to push it into the background. to have sickle cell. Naloxone is something just enough chemotherapy to suppress the that reverses the pain reducing effect of immune system. That dose keeps patients from Professor Wall taught me when I was at morphine in most people so it is not rejecting the new marrow without harming their medical school in the 1970s; he was a great something to try immediately. organs. This change allows transplants for expert in how pain was perceived. He taught adults, as well as children. Because the us that there were several levels at which pain There is no doubt that we need more research procedure occurs later in life, it relieves parents could be altered. If somebody trod on my into pain management in people with sickle of the burden of making the decision for their big toe now, the nerves in the toe would send cell. We need to raise funds to encourage youngsters (even in children, the sickle-cell a message along the nerve fibre and up to companies and scientists who properly transplant mortality rate is 5 percent to 10 my spinal cord; just before the nerve enters understand all of this to do more work in percent). Instead, it allows the adult patient to into the spinal cord, it goes into a sort of this field. It is not a subject that most see how severe the disease is before deciding telephone exchange. An ordinary pain haematologists would have sufficient whether to have a transplant. message will then be sent through the scientific knowledge about and I myself telephone exchange, up the spinal cord and recognise the yawning gap between knowing Another transplant obstacle has been finding into the brain. There are more telephone that there is a problem and understanding a perfect bone marrow match - a full sibling's exchanges within the brain. The pain how to tackle it. marrow provides the best chance. But there's message can be interrupted and altered in only a 25 percent chance that even a full these telephone exchanges, for example, if I People with sickle cell do need to be aware sibling will be a match. And since sickle cell is am sitting quietly and somebody treads on that hyperalgesia is a problem and if you find inherited, siblings may also have the disease. my toe the message is likely to be sent that increased doses of painkillers appear to That leaves about a 10 percent chance that a through loud and clear and I may even make make the problem worse, make the doctors patient will find a suitable donor. Brodsky's a big fuss! If on the other hand, somebody caring for you aware of this problem. It may procedure requires just a half-match - treads on my toe when I am running away be that a mixture of different painkillers will meaning that children and parents of the from a fire, the telephone exchange will cut provide better pain relief than simply patient could be suitable donors. out the pain signal and tell me to keep increasing the dose of one. The difficulty is running. Everyone who has had a sickle pain that everyone has individual needs and Three days after the transplant, the patient is will recognise that events around him or her individual responses. I have seen people who given a high dose of a drug called influences how bad the pain feels. Indeed, developed hyperalgesia while on relatively cyclophosphamide. Just as the bone marrow is many of you make use of this by having pain low doses of opioids while others have huge taking root, the drug kills off the donor's distraction strategies. doses but never seemed to develop this lymphocytes - blood cells that are part of the problem. Drug manufacturers would claim immune system. Medicines used to reduce pain all act at that oxycodone is less likely to cause this some point along the path from the site of the problem and it may be that they are correct; The cyclophosphamide spares the donor's stem pain up through the spinal cord to the brain. certainly some of the people that I care for cells and allows them to establish new blood Looking at what are called opioid drugs such who used to take pethidine have found it a cells and a new immune system. The nascent as morphine, one site of action is in the dorsal more effective drug and have had fewer immune system is re-trained to see the patient's root ganglion (the telephone exchange problems but I would not like to claim that it body as friend, not foe. This prevents the patient where the nerve is going to join on to the was entirely due to taking away the problem from rejecting the transplanted bone marrow - spinal cord). Morphine blocks the telephone of hyperalgesia. As always, pain control is a and prevents the newly developing immune exchange so that the message is not very complicated situation but it is system from attacking the patient. connected. That is what we want to happen. encouraging to note that new developments Unfortunately, morphine and other drugs in the are in the pipeline. www.baltimoresun.com/news/health/bal- same family can, at a slightly higher dose, te.sickle30mar30,0,6112155.story make the telephone exchange more Norman Parker Information Source: Sickle Cell Information Centre efficient! I often describe this to people as CONSULTANT HAEMATOLOGIST News Update for April 2008: having the equivalent of a conference call, if Whittington Hospital, Magdala Avenue, www.scinfo.org/news.htm this were to happen when somebody stood London N19 5NF 020 7288 5437

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TEENAGERS’ VIEWS OF HYDROXYUREA MEDICATION

EDITORS’S NOTE: Studies with children have also reported a may not be appropriate for all patients and the A company has recently been granted licence marked clinical benefit with an evident reduction effect of the drug must be checked throughout for hydroxyurea for the treatment of patients with or disappearance of symptoms. Almost 10% of treatment. sickle cell anaemia. This product was granted children with sickle cell disease are affected by licence under the European Orphan Drug stroke with significant problems persisting in some. PATIENTS’ EXPERIENCES Scheme by the EMEA and therefore is the first Although transfusion has been shown to reduce Using semi-structured questionnaires we spoke to product to hold a licence specifically for the the recurrence of neurological events, there are six of our young patients on hydroxyurea to find treatment of SCD as opposed to a consequence several problems associated with transfusion out about their experiences of this medication. of a treatment of this condition as is the case with including potential infection transmission and iron They ranged in ages from 13 to 20 years with an iron mopping agents. The following article overload. Therefore, hydroxyurea has substituted average age of 17 years. They have all been on presents the findings from a study of the transfusion with good effect. hydroxyurea for at least a year, with an average experience of teenagers taking the medicine. of 25 months on the medication. The medication is taken in capsule-form orally All six patients cited their main reason for taking BACKGROUND INFORMATION and daily as directed by the doctor. The dose is hydroxyurea was to counteract the main Hydroxyurea is described as a “disease- then increased gradually until the maximum symptom of sickle cell: the painful crises. Patients modifying drug” that affects certain cells in the tolerated dose or till a clinical benefit is seen. spoke about taking the medication to “reduce”, body. When used in sickle cell anaemia it “avoid” and “prevent” these crises. A few patients appears to increase the flexibility of the sickled It is important to note that over 1 in 10 adults also spoke about taking it to simply help them cells and reduce the complications in those who treated with hydroxyurea do not respond to the improve their general health. have a history of severe symptoms. These treatment. It may also take weeks or months to include: frequent painful events; a history of achieve the desired effects but improvement is Patients reported that they did not always take recurrent acute chest syndrome; and severe often reported after only a few weeks of their hydroxyurea medication but this was due to anaemia. It can also reduce hospital stays and treatment. As with all treatments sickling may forgetting to take the tablets and was not the need for blood transfusions. Although occur whilst on hydroxyurea, and painful crises, purposeful. Most patients said that their mothers hydroxyurea can reduce the number of painful acute chest syndrome and other complications in particular would remind them to take them in episodes, other complications and may prolong have been reported whilst taking hydroxyurea. these instances. None of the patients reported lives, it is not a cure for sickle cell. changing their prescribed medication amounts Undergoing careful monitoring during and would only change the number of tablets Furthermore, hydroxyurea is usually only treatment is essential because hydroxyurea under the doctor’s prescription. 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.

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FUNDRAISING NEWS

A CLASSIC BALL IN OUR HONOUR

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)

In terms of whether patients felt they would suffer from a crisis if they were not taking their Saturday, 20th October 2007 will be a Fundraising Association. Levi Roots, the hydroxyurea medication; the majority felt they memorable day in the minds of many. For musician, chef and Reggae, Reggae Sauce would, highlighting their dependency on their rugby fans, it will be remembered as the day entrepreneur of Dragons’ Den fame was also medication. One patient felt they were only England and South Africa played the world part of the cheque presentation. The Society taking it as an extra precaution although they cup final in France. For those who were not is very grateful to ASL Fundraising Association. had experienced better health and fewer lucky enough to have travelled to Paris (or We hope that many other companies will hospital admissions since being on the should that be unlucky, since England did end follow their lead. medication. Another patient was unsure of the up losing!) the place to have been was the beneficial effects of hydroxyurea as he had ‘Classic of Caribbean Charity Ball’ at the Iyamide Thomas suffered from several painful crises and hospital luxurious Porchester Hall in Queensway, REGIONAL CARE ADVISOR admissions whilst on the medication. London. This Black Tie event was hosted by ASL Fundraising Association, an organisation All patients questioned felt that their health in dedicated to raising awareness and funding general had improved since being on for charitable causes related to African– hydroxyurea; however, this varied from “definite Caribbean and Bi-racial communities. ASL improvements” to only “a little.” Fundraising Association was set up in 2006 by Alexander Stewart Locations (ASL), a property Additionally all patients demonstrated a company based in London. Lucilda Stewart, reduction in the severity (on a scale of 0-10) of Joan Duke and Shani Cadette were keen to their sickle cell from “before taking hydroxyurea” invest in the community by promoting events to “now, whilst on hydroxyurea”. The reduction which inform, empower and ultimately inspire. varied from patient to patient in line with the In this their first of many charity balls the fund- idiosyncratic nature of sickle cell, but on average raising was in aid of the Sickle Cell Society. the reduction in scores was approximately 4, showing a marked reduction in severity. It is commendable that ASL has recognized the struggle for funding that many charities Overall the patients questioned were positive face and has decided to act. They have about this medication and had experienced a begun a movement and created a footprint reduction in the severity of their illness. to stir the community into action, to increase Hydroxyurea provides potential hope and help awareness of the issues facing Black for improving quality of life and the life span for communities and raising funds to support the those with this devastating disease. organizations that are making a difference. On 4 March 2008 Lucilda Stewart and Shani John Mozie, Vice-Chair of the Society Sonia Patel Cadette presented the Sickle Cell Society at the ASL Ball PSYCHOLOGIST with a cheque for £5000 on behalf of ASL

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TO PUT IT SIMPLY, IT’S ALL ABOUT MEMBERSHIP

determine the organisation’s strategy. To members of the Society and its Trustees must buttress the key role members play in get involved in the on-going discussion about organisations, the charities regulator for what membership means, the rights of England and Wales states on its website that membership and conversely, the obligations “Membership of a charity can bring real of membership. benefits both to the work of the charity and John Mozie for society more generally. When a charity’s Membership of the Society, as in all VICE CHAIRMAN, SICKLE CELL SOCIETY members are active in shaping the agenda associations like it, has to carry a financial and objectives of their charity, the trustee obligation for all its members or their families. body is refreshed and its accountability to its At the current yearly membership of £25.00, In the last meeting of the Finance and members is improved. Membership charities the Society’s membership is cheap at £2 a Fundraising Committee of the Society, the which are effectively run can also enable month. Cheap by any standards, so why do Society’s membership figures came up for individuals to be more involved in their local we have so few paying members? discussion, and we made a shocking communities and can contribute to fulfilling Conversely, the membership could now discovery: there are less than 200 registered the Government’s agenda to increase dictate to the Society what services it needs, fee-paying members of the Sickle Cell individual participation in civil society” and timescales within which to deliver these Society. To be precise, only 180 full and fee- (www.charity-commission.gov.uk/publications/ services. There is so much the Society can paying members of the Sickle Cell Society rs7.asp). offer, and the time is right for the Society to contribute to the cost of running the Sickle re-invent itself and meet both its current and Cell Society. This statement captures the essence of strategic challenges, and the only way it can membership, and also exposes the Society’s meet these challenges is by increased This figure is so inadequate it is nothing less own dilemma. Whilst we have less than 200 support of its members. than miraculous that the Society has survived fully paid-up members, services we offer are thus far. And so, we come to the defining accessed by border associations, people Humanity breeds humanity, and in all pursuits moment where we ask the inevitable with sickle cell and their families who do not of charity, so much has been achieved by question all membership-based necessarily pay to attain membership. the resources and efforts of so few. In the organisations must ask themselves, why words of Winston Churchill, “you make a life membership? Do members matter, or can an Membership is not its own reward. Whilst by what you give”. organisation like the Sickle Cell Society survive membership of the Society provides without members? immense benefits to its members, it must Do something amazing: contribute to the also create some obligations. One of the Sickle Cell Cause. There are 13,000 people with the Sickle Cell best quotes on the responsibilities of disorder in the UK. 250 children are born with membership came from the American John Mozie sickle cell every year, so this figure of 13,000 Judge, Justice Cardozo in 1917, who VICE CHAIRMAN, SICKLE CELL SOCIETY is a moving target. The Sickle Cell Society was stated that “membership in the bar is a set up purely to cater for people with sickle privilege burdened with conditions”. cell, who automatically gain membership Simply put, all associations require their without financial obligations. Through funds members to perform duties to support like the welfare fund, the Society disperses them, and sometimes that contribution assistance to its community of sickle cell could be financial. ““You make a life individuals and their families. As part of its charter the Society is also responsible for The Sickle Cell Society is no different. It is by what you give ...” creating awareness about the condition, and resource-strapped, yet must maintain a Winston Churchill working with the Government on policy certain level of service to meet the relating to sickle cell. Typical of this sort of requirements of its stakeholders and service- work is the adults’ standards on sickle cell, users. Increasingly, this lack of resource is and the current campaign on free beginning to impact on its services. prescriptions for people with sickle cell. The Society has no choice, but to review its Membership drives what the organisation membership criteria. It must make changes does. It is an organisation’s members that to its operating model if it is to survive. Both

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ST CHARLES SIXTH JOURNEY THROUGH THE FORM COLLEGE BBC RADIO 4 APPEAL Black History Month has more importance to us than we realise. Black people not only went Creating a Radio 4 appeal was an exciting through decades of slavery but also suffer from yet challenging journey. Once we had the a common disease that we fail to realise the good news of our application being seriousness of it. Sickle cell anaemia is a disorder successful our next steps were finding a that affects the red blood cells and is most presenter, writing a script, recording the common in black people. St. Charles Sixth Form appeal and finally advertising it. College devoted their time and efforts to sickle cell sufferers for Black History Month 2007. Finding a presenter wasn’t as hard as I initially thought it would be, maybe I just got lucky! We held an evening full of entertainment ranging During a monthly staff meeting we started from education speeches from Shaun Bailey compiling a list of presenters whom would be himself, Fashion Show performed by students, ideal. Then it was a matter of short listing them to dance acts and power points. We sold tickets the top three and presenting this to our Board of and sold Afro-Caribbean food to raise money. Trustees who would make the final decision. Diane Louise Jordan Overall with the help and support of students and I was on a serious hunt to track down Diane teachers we managed to raise over £500.00 for Louise Jordan’s agent. I went through various We all waited in anticipation for the recording The Sickle Cell Society and strongly encourage contacts and internet research which finally led date which finally arrived. Being a big fan of others to do the same. My name is Shorliza me to her agent. I had several discussions with Diane since Blue Peter days I was very nervous Odubore, I am 18 years old, a student at the agent and he confirmed that Diane was and excited to meet her. I met Diane Louise St.Charles Sixth Form College and a successful more then happy to be our presenter. I then Jordan for the first time at Broadcasting House events organiser. Do what we did and help booked a recording date with the agent and to record the appeal. She is even nicer in someone in need. with the BBC. person then when I spoke to her on the phone. We spent about an hour going through the Shorliza Odubore Our next important task was composing a script recording process and by the end of it I felt like and so scheduled meetings with staff. During our I knew her all my life. Recording an appeal is a thought showering (brainstorming) meetings we serious issue however we have still managed to developed our first draft which was sent to the have a good giggle. “GOING BBC producer. The script went through various FOR GOLD” stages of drafts with assistance from staff Leading up to the appeal broadcast was members, our board and the BBC producer who hectic with writing press releases, speaking to The Sickle Cell Society has spear-headed the was extremely helpful and patient. The draft was press and media organisations and using development of ‘Standards for the Clinical Care of Adults with Sickle Cell Disease in the then sent to Diane who added some personal various methods to spread the word about our UK’ and have convened a working group touches and finally brought it all to reality! appeal. Even though it was challenging they consisting of various experts in the field. The say hard work pays off. Society asked Dr Ade Olujohungbe, Consultant Haematologist at University A total of 260 individual donations were made Hospital Aintree (who himself has sickle cell and the total received through the appeal is disease) to chair this working group that has £6,330.25 as last recorded. developed the standards. The provision of care for adults with sickle cell disease can I would like to thank everyone involved in vary significantly between individual professionals as well as healthcare provision putting this appeal together especially Diane organisations. These standards are the tool Louise Jordan for giving up her time, all our needed to address the inequalities in supporters who listened to the appeal and for provision and access to good quality care. all those that kindly sent a donation. Without They will provide guidance on the absolute your contribution and commitment it would not minimum package of care expected for any have been a success! individual with sickle cell disease no matter where they reside in the UK. The standards Kalpna Patel will be launched at the House of Commons on 9th July 2008. The Sickle Cell Society is FUNDRAISING MANAGER Kalpna Patel & Diane Louise Jordan definitely “Going For Gold” in its bid to [email protected] ensure that sickle cell service users receive Mob: 07809 396 410 the best quality care available.

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ELOOKCASTING PARACHUTE FOR FREE! Elookcasting, an ethnic modelling and casting agency, held 'A Nite On The Runway' which really was a night to remember. The If you have ever wanted to do a parachute night was a well organised and well received jump here is your chance. The Sickle Cell fashion show displaying amazing pieces of Society is looking for hundreds of adventurous airfields across the UK. No experience is some of London's most up and coming volunteers to make a fundraising parachute necessary as all training is given and if you raise designers. It was an opportunity for designers jump and if you raise enough in sponsorship anything from £360 (depending on the type of and models alike to showcase their talents. you will get to jump for free! There are three jump you choose) you will receive your jump Elookcasting like to work very closely with the types of jump available – an ‘Accelerated for free. community and often use local resources, FreeFall’ where you can experience the thrill of striving to involve local businesses whenever skydiving solo from up to 12,000 feet, a So if you would like to make a thrilling skydive from they can. This drove Elookcasting’s decision ‘Tandem Skydive’ from 10,000 feet attached to 10,000 feet or an exhilarating solo jump from up to to work with the Sickle Cell Society, which is a professional instructor and a ‘Static Line’ jump 3,000 feet give us a call at the office on 020 8961 based locally. Moreover the cause and which is performed solo from up to 3,000 feet 7795 - we will send you a full information pack and everything the Society does for people living - and you can jump from any one of over everything you need to take part in the experience of with Sickle Cell is very close to the heart of twenty British Parachute Association approved a lifetime. CEO of Elookcasting-Tre Danso who has friends afflicted with the condition.

Elookcasting helped raise a few hundred Students Union have donated an additional pounds on the evening which also included a LEEDS £136.00. The Event ran very smoothly and our raffle with some great prizes - a dvd player team is very happy with how willing people are and mobile phone to name a few. METROPOLITAN to help arrange an event for a good cause. Everyone who attended had an exceptionally Elookcasting would like to take the UNIVERSITY good experience and the feedback has been opportunity to thank the members and staff incredibly positive. As an events management of the Sickle Cell Society for their hard work placement student working on this event and dedication to the cause. All of your alongside the CPV team I can say it has been cooperation, support and guidance has a valuable experience and I am very grateful really helped us to promote the charity and to everyone's support. really is much appreciated. Jerry-Eve Rose For further information about Elookcasting or EVENTS MANAGEMENT STUDENT further events and fund-raising, please email Tre at: COMMUNITY, PARTNERSHIP & VOLUNTEERING [email protected] or call: 07931858992 Community Partnerships and Volunteering By Tre Danso organised a live Reggae event on October JACKEE BROWN 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 We would like to congratulate Mr and Mrs was an excellent ending to a series of events/ Adrian Clarke who got married in September lectures that the CPV office, in partnership with 2007. They kindly asked guests to donate to the Institute of Northern Studies and the School either the Sickle Cell Society or Shelter instead SPRINGHILL PRISON of Social Sciences, had arranged throughout of receiving gifts. As a result we have October. We showcased the very talented received £425 in donations. Thank you to all local band "Roon Bokka" fresh from Leeds the guests who donated and all the best to This year prisoners at Springhill Prison, College of Music. We also had a selection of the happy couple. Aylesbury raised £596.96 during their Black locally renowned DJ's all of whom played History Month fundraising activities. Events seamless sets with a mixture of Reggae, Drum varied from numerous speakers, including and Bass, Hip hop, Soul and Dub. a visit from Anti Slavery International and two music performers. We wish to thank the We had the aim of raising money for the charity organising prisoners who were supported Sickle Cell. With this in mind we held a prize by the education department, prison staff draw with prizes donated by Red Stripe. I now and governors. realise I over estimated the willingness of students to part with their pennies. In spite of this By Peter Crowther we raised just over £139.00. Thoughtfully, the

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JUST GIVING WEDDING LIST GIVING

We’ve teamed up with Justgiving.com, the Wedding List Giving was set up in 2004 in • Civil Partnership Giving UK’s leading online fundraising website, so order to encourage couples to make • Anniversary Giving you can donate and raise funds for us online. donations to charity rather than ask for • In Memory Giving Using Justgiving saves us costs and reduces wedding gifts. The scheme was established • Birthday Giving our admin burden, so going online is by far by two cousins, Holly and Hannah, both of • Christmas Giving the most efficient way of supporting us. whom have a background in fundraising for charity. Hannah ran the scheme (and If you don’t want to receive presents for a It’s easy to make a single or monthly donation participated in it on her wedding day) for two celebration (be it your birthday, wedding, with a credit or debit card online: years until becoming a mum. The scheme is anniversary or Christmas) or prefer to mark the All you need to do is go to now run by Holly. passing of a loved one with charitable gifts rather www.justgiving.com/jgdemo/donate than with flowers, then this service is for you. The scheme has now grown to encompass a Justgiving reclaims Gift Aid automatically and number of additional schemes that celebrate The schemes offer you the option of raising as pays your donation directly to us at the end of all aspects of life through giving. Lifelong much as you can for your favourite charity OR every week, and the site is 100% secure. Giving helps people to celebrate important supporting several different charities to mark moments in life, by asking friends and family your special occasion. We make sure that for Justgiving also makes it easy to raise money: to donate to charities and not-for-profit every £1.00 given by your friends and family at you can create an online fundraising page in organisations. least £1.00 reaches the charity. minutes to collect donations for any sponsored event or appeal. You can create There are 6 different types of schemes: Please think of the Sickle Cell Society when you your own for any event at are celebrating an important moment in life www.justgiving.com/jgdemo/raisemoney • Wedding List Giving and visit www.lifelonggiving.com.

Fundraising pages are just like paper sponsorship forms, except they’re online, so you don’t 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 [email protected] 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

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CYCLE FROM LONDON TO PARIS FOR FREE!

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 world’s most chic cities on one of the best cycling routes in Europe!

Cycling through beautiful English villages and into stunning rural France you’ll 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 you’ll experience will be one you’ll 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 can’t 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.

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“ASK DR REES” THE SOCIETY’S MEDICAL EDITOR

QUESTION QUESTION

I have 2 children aged 7 and 4 of mixed I was wondering if you could help me with a parentage, I am white British. The children’s problem I have at the moment. I am writing father is Black British and his parents were born a report on sickle cell anemia but am in the West Indies. When we had our children having trouble in finding any statistics. For and asked whether sickle cell testing was example: I am looking for occurrences of required we were advised that it was not sickle cell in the UK/Worldwide over the last 5 David Rees necessary or standard procedure in Plymouth, years and mortality in the last 5 years due SENIOR LECTURER/CONSULTANT HAEMATOLOGIST MEDICAL ADVISER - SICKLE CELL SOCIETY South West of England and we accepted the to complications. policy at the time. ANSWER However, my four year old daughter is going to have a general anaesthetic for dental The Sickle Cell Society has asked me to help prophylaxis those deaths have largely extraction and the hospital have asked that she with your question. Although I am technically disappeared in the UK and that has had a be tested prior to the operation. I am extremely on sick leave I would be pleased to help if I profound effect on life expectancy. Professor worried and respectfully request you advise me. can. I need to know what level of report you GR Serjeant has published good figures from are writing, so that I can put the answer in an Jamaica, enter him into medline and you will I have many questions including: what are the appropriate format. see his data. risks and percentages of mixed race children carrying this disease? Why were my children Allison Streetly (NHS Director for sickle cell & Acute chest syndrome has been a traditional not tested at birth and should they have thalassaemia screening) would have a lot of enemy in sickle cell, and remains a significant been? Is there additional risk to them going the statistics for the UK, you can find her by cause of death. under anaesthetic without being tested and googling her. The truth is that no one knows the what exactly does the test process involve. exact figures for the UK, figures of 10 - 12,000 Stroke is a serious problem in children and in Thank you so very much for any information are usually given and this would cover those adults with sickle cell. you can offer to a very confused and nervous with S/S, S/beta thalassaemia and S/C. Her mum of 2 beautiful girls. report ,"Sickle Cell Disorders in Greater London", Renal failure is likely to feature more was published in 1997 but remains a valuable prominently as we learn better ways of ANSWER reference source. The national screening avoiding stroke again Prof Serjeant has programme will have data about the number published recent data showing that the over Your question was passed on to me by the of individuals born in the last few years. 65's all have at least some evidence of Sickle Cell Society. I think it is unlikely that there Worldwide, the genes are much more kidney failure. is anything to worry about. 5-10% black British widespread than we tend to realise, here in the people carry the sickle cell gene (sickle cell UK. We are focused on West Africa and the If we went to a rural village in Africa, infection, trait, HbAS) and it is much rarer in white British - Caribbean because many of the people including malaria would remain top of the list of affecting less than 1:1000 people. It is therefore affected come from families who live, or lived causes of death. In the cities, with better possible that your daughters could carry sickle, in those countries but Nigeria probably has the access to health care, there is inevitably a if their father is also a carrier, but very unlikely highest number of affected people. different profile of problems. that they would have sickle cell disease (HbSS). Mortality is heavily influenced by environment. You may need to refine the aims of your project The test is just a simple blood test and it usually On May 21st NCEPOD will be releasing the as you can see that you will otherwise be trying tales a few days to get the results. If your details of a study of causes of death in people to cover a very large field. children are carriers of HbAS it is not linked to with sickle cell over a two year period. You will any significant health problems. Anaesthetists understand that I am duty bound not to reveal like to know if someone carries sickle before the outcome of that study. Please continue sending in your questions by they put them to sleep although there is no email or by post and Dr Rees will return with a special treatment and the added risks are very, When I started in this field in the 70's, infection reply, possibly with the help from our pool of very small. If the mother is white British, in was the leading cause of death with Medical Advisers. general antenatal testing is not performed in bacterial infections such as pneumococcus that the risks are very low, although it should be being high on the list of causes of death. Please send to: possible to be tested if you request it. Now, with better immunisation and penicillin [email protected]

NEWS REVIEW | SICKLE CELL SOCIETY ‘ASK DR REES’ | 31 SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 1

events donations

• 5th July 2008 Payroll Giving ...... £10,700.04 Royal College of Physicians Open Day Radio 4 Appeal ...... £6,275.25 Celebrating 60th Anniversary of the NHS ASL Fundraising - Lucilda Stewart ...... £5,000.00 Giving.Com Limited ...... £3,006.75 • 6th July 2008 Mark Sarfo-Kantanka - Ex Fundraising ...... £2,000.00 Service of Remembrance SAB - Evol Graham ...... £1,825.00 The Parish Church All Souls, London Lucreta LaPierre - Ex Fundraising ...... £1,790.50 Karl Murray - AWEDIS ...... £1,211.00 • 6th July 2008 Church of God Evangelism - Pastor Lorraine Buchanan ...... £1,000.00 British 10K London Run St Thomas' Church - Clapton Common ...... £935.61 Woodcote High School & Sport College - Surrey ...... £855.40 • 9th July 2008 St Thomas Parochial Church Council - Maergaret Browne ...... £839.17 Launch of Adult Standards of Care Nottinghill Methodist Church ...... £691.50 House of Commons Claremont High School - K Plokowski ...... £608.31 HM Prison Springhill - Eddie George...... £596.96 • 2nd-6th July 2008 Sweetwoods Golf Club - Mrs J S Swanston ...... £566.41 London to Paris Cycle Ride Carol Phillips ...... £525.28 £1100 minimum sponsorship, Paris St Charles Catholic Sixth Form College - London ...... £515.05 Lance Corporal Edia Bruno - The British Forces Post Office ...... £500.00 • 17th July 2008 Calvary Church of God - Joan St Lois ...... £500.00 Black Tie Event ITV Services Limited - On behalf of MC Micheal Harvey ...... £500.00 By Thebes Group, Kensington Roof Gardens Carmen Gowie ...... £500.00 • 19th July 2008 ICAN - J O Femi-Famakinwa & I B Adeagbo ...... £500.00 Ashurst LLP - Sharon Brown ...... £500.00 Annual General Meeting Alma Henry Charitable Trust - London ...... £500.00 Emmanuel Centre, London Funeral care - In Memory of Phillip Stephen Charles ...... £451.00 • 1st-8th August 2008 Hobsons International ...... £350.00 St Mellitus with St Mark Parochial Church School ...... £300.00 Annual Children’s Holiday Leeds Metropolitan University - Jerry Eve Rose ...... £275.95 King’s Park, Nothampton Amos Dadzie ...... £265.00 • 10th-14th September 2008 Wealdstone Methodist Church ...... £257.50 Guardian Newspaper ...... £257.50 London to Paris Cycle Ride £1100 minimum sponsorship, Paris The Mill Hill Sch Foundation - Helen Lawson ...... £251.80 P C C of St Augustines Church - Tooting ...... £250.00 • 4th-5th November 2008 ABI Associates Limited - Kim ...... £250.00 International Preconception Conference A R Hall ...... £250.00 London Louise Jeffery ...... £250.00 At It Production - London ...... £250.00 V Watson ...... £250.00 Okebugwu C Ogbonna - Tottenham ...... £250.00 Babatunde Adenibi ...... £250.00 SPONSORED BY 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.

SCS News Review Sickle Cell Society

We would like to know your news, views and 54 Station Road, London NW10 4UA comments for inclusion in the next edition. T: 020 8961 7795/4006 F: 020 8961 8346 Registered Charity No. 1046631 Company No. 2840865

Please send your contributions to [email protected]. 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. www.sicklecellsociety.org