Going for Gold the Voice of the Dr Ade Olujohungbe Chairs Group Sickle Cell Community Set to Standardise Adult Care
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SICKLE_CELL_SOCIETY:Cover_05/08 22/7/08 07:38 Page 2 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 NEWS REVIEW | SICKLE CELL SOCIETY CHAIR’S MESSAGE | 03 SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 2 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 04 | CHAIR’S MESSAGE SICKLE CELL SOCIETY | NEWS REVIEW SICKLE_CELL_SOCIETY:Pages_05/08 2/7/08 18:00 Page 3 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.