Sickle Cell Society July Newsletter

Issue 9 | Summer 2012

An Evening with

Dame Sally Davies Patient & Carer Education Seminar The voice of the Sickle Cell Community

Sickle Cell and I

Sickle cell disease affects millions throughout the world; making it one of the world’s most commonly inherited blood disorders.

Contents Summer 2012

An Evening with Sally Davies

Chairperson’s Message

03

An Evening with Dame Sally Davies

04

The First Patient and Carer Seminar on Adequacy and Safety of Blood Supply

05

Comprehensive care for people living with sickle cell disease in England

06

Children’s Holiday

08

Drawing Competition Not one, not two but three – a global collaboration to reduce the burden of Sickle Cell Disease

09

• Society News 7th Sickle Cell Congress in Strasbourg

10

It Pays to Volunteer

10

• Service Users News Sickle Cell and I

11

My Body

11

• Support Group News It Pays to Volunteer

The Journey So Far

12

A Reflection on the Development of a new Psychology Service in Leicestershire and Northamptonshire: A Local Achievement

13

• Service Providers News NHS Sickle Cell and Thalassaemia Screening Programme News

14

AGM Summer Update

16

News From Parliament

17

Sickle Cell Disease News Update

19

• Fundraising

A Tale of Two Marathons

02 | Contents

A Tale of Two Marathons

21

Metropolitan Police Crime Museum Donates £1,247.90

23

Completed Charity Skydive

24

Up for a challenge?

25

Sickle Cell Society | News Review

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Message from the Chairperson

Anne Welsh BA, MSc Chairperson, Sickle Cell Society

I am pleased to report that the Society has delivered a resilient performance in what has been one of the most challenging environments for many years. Reduced funding from the government has made for an uncertain business climate in general this year, but especially for Charities.

Against this backdrop, the Sickle Cell Society (SCS) is one of the few charities anywhere to remain true to its original objectives of serving sickle cell patients. This is driven by total commitment and enthusiasm of volunteers, staff and the Board of Trustees without whom, the achievements would not happen. My sincere thanks go out to everyone.

These tough economic times continue to put enormous strain on the organisation and give us reason to be cautious. But I am always amazed at how adaptive our Society is by taking on these challenges and still managing to deliver an internationally recognised service. I am so happy to be able to see this in action on a daily basis.

I am going to share with you how important the Society work has been to me personally and how it has allowed me to grow as a contributor in my community.

Eighteen months ago I was in a hospital bed gravely ill because my body had rejected the blood I had just received. I was rushed to hospital not knowing what was going on medically and if there was a cure. It took many weeks to recover and constant supervision in hospital from specialist consultants.

When I was discharged from hospital, I knew the

News Review | Sickle Cell Society

blood supply for sickle cell patients was critical to their survival and I was going to understand how the Society can help improve this critical care issue. In February 2012, the SCS took the lead in promoting the Patients & Carers Education Series - TerumoBCT sponsored The First Patient & Carer Seminar on “Adequacy and Safety of Blood supply”. This event was well attended and received very positive feedback.

This was recognised as a true success and another event was later held by the National Health Service (NHS).

going way. We are looking at new models of funding the Society and generating donations.

We have not given up on the annual children’s holiday which is truly loved by patients living with the disorder.

Looking ahead, our priorities for the year are clear. We have a plan and it is now our collective job to make it happen. I thank everyone for their continued support.

Anne Welsh Another key lesson is that we as patients need to be aware of our total health needs, not just sickle cell. I learned this during my surgery earlier this year for an unrelated sickle cell condition.

This condition had been there for four years and I had never taken it as seriously as I should have; especially during the last two years when I noticed I was in hospital more than usual for sickle cell crises. After this condition was treated my body showed a whole new level of resistance in preventing a crisis from occurring.

I have mentioned previously how adaptive the Society has been. However, greater challenges are on the horizon, such as the way funding is changing while at the same time the structure of the NHS is undergoing transformation.

Recessionary times have also restricted corporate donations.

CHAIRPERSON, SICKLE CELL SOCIETY

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Although I have talked about this in the past, the Society is now taking action to structure the organisation so it survives under these operating conditions. The Society is becoming more focused on certain key areas. We continue to engage politicians, corporate sponsors and the NHS to get the message out that sickle cell is not

Chair’s message | 03

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An Evening with Dame Sally Davies On 31st January 2012, Dame Sally Davies, the Chief Medical Officer hosted a wine and Canapé evening in support of the Sickle Cell Society. Dame Sally Davies gave a welcoming address, complimenting the Society on its achievements and stating that the SCS is now 38th in the national definition set. James Fitzpatrick from Roald Dahl’s Marvellous Children’s Charity gave a wonderful talk. Yemisi Adebayo and Stella Ochi, our service users, gave heart-rending testimonies for the support they have received from the Society.

Professor Dame Sally Davies CMO

Cell The Sickle . Kofi Anie vies and Dr Da er lly vis Sa Ad e Dam ientific Society’s Sc

Servic e user

Guest listening attentively to Dame Sally Davies

Yemis i Adeb ayo

Dame Sa lly Davis with Sickle Cell Staff, Trustees, Voluntee rs and Su pporters

Servic e user

s Thoma amide ey & Iy rt o N p Dr Phili

04 | News and Events

Stella Ochi

L-R The Dire ctor of the NHS Sickle Thalassaem Cell and ia Screen ing Progra Dr Allison Streetly, D mme, ame Sally Alexande D avies and r Adesope The Sickle Cell Society Vo lunteer.

Sickle Cell Society | News Review

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The First Patient and Carer Seminar on Adequacy and Safety of Blood Supply On the 22nd February 2012, The Sickle Cell Society held a patient education seminar at Governors’ Hall, St Thomas’s Hospital. In this third instalment of our patient education seminars, we addressed the adequate and safe supply of blood. Professor Dame Sally Davies, the Chief Medical Officer for England; discussed the current changes within the NHS regarding blood supply & blood safety, She was followed by the Rt. Hon Diane Abbott MP, Chair of the All-Party Parliamentary Group for Sickle Cell & Thalassaemia and the Shadow Minister for Public Health. Also in attendance was Lorna Williamson from the National Blood Service. The Patients were delighted and according to our evaluation of the event, they thought the seminar was very informative.

The proceedings of the Patient and Carers Education Seminar was published please contact us for a copy.

Sickle Cell Patient Annie MacDonald voicing her concerns on the issue of blood safety

Dame Sally Davies, Dr Lorna Williamson and Dr Asaah Nkohkwo

Anne Welsh, Dame Sally Davies and MP Diane Abbott

Engaged by the speaker

Engaged by the speaker

Dr Lorna Williamson and Theo Clarke from NHSBT discussing matters on blood donation

Celebration and Thanksgiving Service 10th June 2012 This year marks 33 years of campaigning for the cause of those living with sickle cell disorder. Each year the Society holds a church service to celebrate and to remember those who has sadly passed away as a result of sickle cell disease. It is a service of reflection, Celebration and Thanksgiving service with a difference. In attendance were Mayors and other dignitaries.

News Review | Sickle Cell Society

Anne Welsh the Society’s Chair addressing the audience

Pastor Ogohogho Ogiemudia of Christ Embassy Wembley gave a short but powerful sermon

L- R Suziekim Subramaniam, Carlotta Olason, Priyanka Subramaniam singing “Greater Thing Are Yet To come”

Dignitaries participating in the service

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Comprehensive care for people living with sickle cell disease in England: Department of Health support for a meaningful partnership for the future - A Project Impact Reflective

By Dr Asa’ah NKOHKWO FRSPH Nationwide Adviser, Comprehensive Care

Non-Medical: - General Surrogate Advocacy issues: housing, employment, immigration - Access to Welfare Benefits payments - Stabilizing Families through childminding and other support provisions - Information & Education of the affected as well as the wider public

Dr Asa’ah Nkohkwo FRSPH Nationwide Adviser, Comprehensive Care

Under Section 64 of the UK NHS & Public Health Act 1968, the Sickle Cell Society entered into formal collaboration with the Department of Health’s 3rd Sector Innovation, Excellence & Service Development Programme in 2009. The objective was to explore a Best Practice model of comprehensive care, through a benchmark of collaborations and partnerships. Under this mandated arrangement, and during the last couple of years, Dr Nkohkwo, previously chief executive of the Society, has travelled across England to engage NHS service users and providers, responsive commissioners and other stakeholders. He has instigated and/ or supported collaborations in the review of services for improving health in people with sickle cell disease. In this article, he invites us to reflect on the outputs and outcomes, i.e. an Impact Assessment of the project, (2009-2012), which was aimed in essence towards marketing the Society’s RCA pilot model of comprehensive care, which could also have exemplary implications for the wider chronic disease care.

BACKGROUND: The Wider Determinants of Health An estimated 14,500 people live with the “fullblown” sickle cell disease, while another 240,000 are silent carriers in the UK. The challenges posed by the disease could be summed up by two landmark documents- a Department of Health (DH) sponsored review (2009) which highlighted medical needs, and the findings of the Sickle Cell Society’s flagship Regional Support Care Derbyshire Project, 2004-2008, which later highlighted largely non-medical yet vital and complementary support needs (ref SCS HIA Report 2007, www.sicklecellsociety.org & News Review Spring 2010): Medical challenges: - Rapid access to treatment, preferably bypassing the general practitioners (GPs) & Accident & Emergency (A&E) - Patients engagement & experience-based design of care pathways - Free Prescriptions & Equity in access to new treatment technologies - Addressing Research towards a cure

THE NATIONWIDE COMPREHENSIVE CARE PROJECT In effect, the background in 2009 necessitated a focus on influencing the nascent commissioning agenda and arguing the case that: 1) Contemporary healthcare commissioning should engage the equally contemporary thinking that sickle cell disease care provision needed a coordinated / joined-up approach, addressing all the comprehensive multi-disciplinary challenges posed by sickle cell to the health service user and provider alike.

2) The service users and indeed service user groups (such as the Sickle Cell Society and its regional links) should be party to the developments and arrangements for care, if the eventual care formula / configuration shall be meaningfully comprehensive, thus guaranteeing a better likelihood of succeeding. We had to advocate for the wider determinants of health as evidenced by the potentials of our independently audited work and as advocated no-less by the NICE (Bulletin of February 2008).

Therefore, the challenge was to explore a Best Practice model of comprehensive (bio-medical & support) care, through multi-disciplinary collaborations and partnerships.

An appraisal of the on-going changes in the haemoglobinopathies sector in the NHS would record a very productive collaborative response to the drivers of change indentified in the News Review of Spring 2010. The outputs and outcomes involving the National Comprehensive Care Advocacy (NCA) Project can be summarised as shown on Table-1.

Key Outputs (collaborations) & Outcomes (Results) & Impact of the NCA Project (2009-2012).

The project is heavily indebted to the contribution of the various stakeholders listed.

STAKEHOLDER ENGAGED BY COLLABORATION - (PROJECT RESULTS /OUTPUTS) OUTCOMES with IMPACT APPRAISAL of CHANGES INSTIGATED NHS SERVICE PROVIDERS: held working sessions with commissioners and managers in 9 out of 10 NHS strategic regions, including: North West, North East , Yorkshire, West Midlands, East Midlands (EMSCTN); South West, SC; London & SEC. Employed evidence from emerging national policies to inform user-focused regional developments.

Instigated a Pan-London Commissioning Forum in 2010. Worked with Imperial College (CLAHRC) & the EMSCTN network to develop and road-test a service users satisfaction questionnaire to gauge impending NHS developments.

A robust performance gauge now exists to ascertain the user responsiveness of commissioned services for people affected by sickle cell disease.

Improved collaboration between the provider and user sides of the NHS divide.

NHS SERVICE USERS: across England including Bristol, London, Birmingham, Manchester, Liverpool, Sheffield, Leeds and Portsmouth.

Information provision to update on various NHS developments, especially w.r.t. commissioning arrangements; surrogate advocacy helping to articulate concerns; orchestrating service users and user groups responses to various policy consultations from the DH. The staff and governance of the Sickle Cell Society: accessible counsel of reference to the Sickle Cell Society staff and governance.

Cont’d next page...

06 | The Society projects

Sickle Cell Society | News Review

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Cont’d from previous page...

Service users have been better informed and more engaged with NHS developments across the country and hence more empowered to participate in the contemporary ethos of co-design of their very own healthcare.

The status of the Society with its stakeholders has been enhanced significantly.

UK FORUM ON HAEMOGLOBIN DISORDERS: Increased service users’ involvement with UK Forum steering committee and conferences and peer review inspection visits to treatment centres.

Improved collaboration has been fostered with the user side of the NHS divide.

Service improvement reviews should be more user-responsive.

DH CLINICAL SERVICES DEVELOPMENT GROUP Involvement in development of key clinical services including: specialist service definition sets, TCD ultrasound, NHR register, revision of paediatric treatment standards.

Surrogate advocacy has enabled a service user’s input into the development of key clinical services.

ALL-PARTY PARLIAMENTARY GROUP FOR SICKLE CELL & THALASSAEMIA Provided evidence gathered from nationwide itinerary, including such issues as Free Prescription, while also relaying feedback from Parliament.

Sickle Cell patients now influence Parliamentary scrutiny of health & social care policies more than ever before.

NHS COMMISSIONERS: membership of the DH-EMSCG Project Expert Working Party & the Specialised Services PPE Steering Group of the NHS Commissioning Board Authority.

DH Commissioning Framework for the Haemoglobinopathies launched March 2012; How commissioning will be measured: Supported the definitions of commissioning outcomes and measures; Produced commissioning strategy paper on a model “Community Hub” functionality Through a user’s engagement workshop and representations, influenced the Commissioning Framework to include a focus on non-acute care provisions. The “Community Hub” model has been wellreceived as a way forward for service definition. The DH Minister for Quality has referred the model to commissioners across the NHS in England.

SPECIALISED HEALTHCARE ALLIANCE: Membership supported the development and presentation of 5 position statements in response to key government policy intentions w.r.t. specialised health conditions.

Another strategic alliance that has enabled Sickle Cell patients to influence Parliamentary scrutiny of health & social care policy more than ever before.

News Review | Sickle Cell Society

GPs & PRIMARY CARE: Through NIHR-CLAHRC for the NWL, supported a model GP sickle-cell awareness intervention project with PRINCE2 project management assurance.

Increased awareness of sickle-cell issues in NWL primary care should improve patients’ confidence in GP and reduce primary care by-pass.

NHS ADVISORY PANELS: NICE, SaBTO, UKPHR Supported the production of NICE Guidelines on managing acute painful sickle episode in hospital; supported the assessment of NIHR grant applications on engagement potential of various stakeholders; supported the DH-SaBTO blood donor review in 2011; supported the assessment of over a dozen candidate specialist portfolios for the UK Public Health Register.

Surrogate advocacy has enabled a service users input into the development and review of key clinical services and guidance.

Also, UKPHR work has afforded an input into NHS workforce development.

DISSEMINATION of LEARNING: worked especially with the NIHR-CLAHRC for NWL @ Imperial College; the Sickle Cell Society Editorial Team; reported periodically to the DH: 15 publications including international peerreviewed outlets; 4 formal reports to the DH; 21 formal presentations; numerous meetingsnationwide and internationally; Moderated/ chaired 3 milestone patient & carers education seminars in the UK & 2 international conferences on sickle-cell health improvement.

The comprehensive care project has served as a productive platform to test and optimise a concept of care. Lessons from the project are now available to enable the provision of and continuous improvement in comprehensive care for people living with sickle-cell disease in the UK and beyond.

CONCLUSIONS, LESSONS & RECOMMENDATIONS The momentum in the sickle-cell disease sector remains towards a meaningful comprehensive care model, in effect “a Managed Network addressing a commissioning framework for the seamless provision of specialist care, local hospital care & community care”. It should be pointed out that, as a result of remit and the emerging commissioning climate, (especially following change of government in England in 2010), the outputs so far have largely been in favour of acute sector developments. Yet, as articulated through the surrogate advocacy of the Comprehensive Care project, there is strong evidence from the patients and patients groups, that a truly user-responsive network of care should best be designed to include the concept of a commissionable comprehensive community hub functionality (Fig-1), addressing also the

wider determinants of health. It is therefore encouraging that the Minister for Quality and specialist commissioners have all shown interest, recently, in the hub.

On a note of lessons, thanks to the multifacetted role of the Comprehensive Care Project, it has been exemplified that with suitable resourcing, service users can directly or through surrogate advocacy contribute to shaping the future of their very own care arrangements. It has also been exemplified that service providers will work with suitably coordinated responses from the service users side to enable the establishment of quality and potentially more productive care for all affected by sickle cell disease.

It is hoped that the gains from the last 3 years will continue to inform the on-going NHS reforms, including the nascent Clinical Reference Group (of the new NHS Commissioning Board Authority) on the application of the new DH Commissioning Framework for Sickle Cell & Thalassaemia.

We would appreciate continued feedback from the readership and the wider haemoglobinopathies sector on the perceived short, medium and longer term impact of the Comprehensive Care campaign. Finally, we acknowledge with immense thanks the support of the DH, the UK Forum and other NHS stakeholders, the patients and their carers and the Sickle Cell Society for this improvement work.

CLIENT B SELF MANAGEMENT PROGRAMME HOME CARE CARER’S SUPPORT

CLIENT A REFLEXOLOGY BENEFITS

SOCIAL SERVICES HOUSING BENEFITS CHILD CARE

CLIENT C DRY HYDROTHERAPY MENTAL WELL BEING SOCIAL SERVICES

EMPLOYMENT & EDUCATION

CLIENT E CHILD CARE SUPPORTING PARENTS PROGRAMME

CLIENT D TRANSPORT HOUSING

WHOLE SYSTEM SELF MANAGEMENT PROGRAMMES

DRY HYDROTHERAPY

GP COMMISSIONING CONSORTIA

Community Hub NHS HAEMOGLOBINOPATHY AND RELATED SERVICES

SINGLE POINT OF ACCESS CO-ORDINATION OF SERVICES: INTEGRATION & CONTINUITY

MENTAL WELLBEING SERVICES

CARER’S SUPPORT

HOME CARE SUPPORT COMPLEMENTARY THERAPIES

TRANSPORT

Fig-1 The Model Community Hub Functionality Chacon, A; Nkohkwo, A; Cavanagh,S. Oct2011

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The Society projects | 07

SICKLE_CELL_SOCIETY Newsletter JULY 2012_Pages_12/11 11/07/2012 12:05 Page 6

Children’s Holiday Each year the Sickle Cell Society holds a children’s holiday. Myles Angel was very pleased after attending the children’s holiday and wrote this wonderful thank you letter to Comfort Ndive the Society’s Regional Care Advisor.

Everyone’s a Winner results of Children’s Drawing Competition In the last issue of our newsletter we ran a children’s drawing competition so the winning pictures could contribute to the new edition of the NHS Sickle Cell and Thalassaemia Screening Programme’s parent /carers guide due out this autumn. We have now chosen four winning drawings for the guide, but guess what? In this competition everyone is a winner and has won a prize just for taking part! Thanks to all the young people that sent in drawings; prizes will be awarded shortly. We received some fantastic drawings and the four winning drawings are reproduced below. We plan to feature more of the drawings in subsequent issues of the newsletter and display them at our forthcoming AGM on 14 July.

Well I did say everyone was a winner didn’t I? I do believe we have some budding Picasso’s in our midst! We would like to thank the Roald Dahl's Marvellous Children's Charity and the band JLS for donation of prizes.

Pictures that will appear in the NHS Parents / Carers Guide

Gracedo Lelo – Age 7 ggerue - 1 Chidera E

Tiarnah Bird – Age 8

08 | The Society projects

11

3 su – Age 1 Dahlia Ju

Sickle Cell Society | News Review

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Not one, not two but three – a global collaboration to reduce the burden of Sickle Cell Disease

By Iyamide Thomas - Sickle Cell Society Regional Care Advisor, South London the Westin Atlanta Perimeter North Hotel in Atlanta, USA played host to the 2nd National Conference on Blood Disorders in Public Health (12-14 March), the Conference of the Global Sickle Cell Disease Network (14 -15 March) and the 2nd Meeting of the Worldwide Initiative on Social Studies on Haemoglobinopathies – WISSH – (16 March).

L-R: Organizers of the first conference Dr Christopher Parker and Dr Hani Atrash, Deputy Director and Director for the Centre for Disease Control (CDC) Division of Blood Disorders, respectively Recently, I was privileged to attend a unique collaboration of three international conferences where leading experts from around the globe came together to present, discuss and examine strategies, experiences and techniques all focused on promoting and improving the health of people with blood disorders, in particular Sickle Cell Disease and Thalassaemia. From 12 – 16 March 2012, at

Over 300 people attended and although the majority were based in the US, participants also came from Bahrain, Benin, Brazil, Canada, Democratic Republic of Congo, Ghana, Guadalupe, India, Italy, Jamaica, Kenya, Kuwait, Nigeria, Portugal, Uganda and United Kingdom.

They included public health professionals, medical professionals, health education and communication specialists, researchers, policy makers, representatives from voluntary and advocacy organizations, private sector leaders and a few service users. Well known attendees from the UK included Dr Kofi Anie, Dr Moji Awogbade, Professor Simon Dyson and Dr Baba Inusa. There were a wide variety of poster and oral presentations under conference themes that included ‘partnership & collaboration’, ‘prevention’, ‘policy and legislation’, ‘communication, media & technology’, ‘ disparity’, ‘public health system improvement’, ‘partners’, ‘research’, ‘stigma’, and ‘carriers’.

I presented a poster entitled ‘The Family Legacy – an innovative approach to raising awareness of sickle cell disease and testing’. This showcased the outreach work I do on behalf of the National Health Service (NHS) Sickle Cell and Thalassaemia Screening Programme, using the Family Legacy DVD drama (which many of you have seen) to raise awareness of sickle cell disease, testing and associated myths. At the WISSH conference I did an oral presentation in the ‘Partners’ session called ‘The Family Legacy – a UK drama on Sickle Cell and relationships in four generations of a British Nigerian Family’.

Both presentations generated a lot of interest and contacts.

Front Row L-R: Charlotte Owusu, Iyamide Thomas, Back Row L-R: Dr Baba Inusa, Dr Saranya Singaravel

News Review | Sickle Cell Society

The organizers and sponsors of these three conferences should be applauded for putting on such a successful, informative event. For me it really brought home the fact that West Africa bears the brunt of the sickle cell disease burden.

However, to have witnessed such an expert gathering of minds and heard about the

research and work going on globally to reduce this burden and make life better for those living

Iyamide takes a question about her poster

with sickle cell disease (and other blood disorders) made me leave Atlanta with a sense of some hope.

L-R: Charlotte Owusu, Dr Allan Platt, Emory University, Atlanta and Iyamide Thomas

Useful websites www.blooddisordersconferences.com www.familylegacy.org.uk www.sct.screening.nhs.uk

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7th Sickle Cell Congress in Strasbourg Carlotta Olason and Comfort Ndive participated in the 7th Sickle Cell Congress in Strasbourg organised by Dory’s supported by the European Directorate for the Quality of Medicine & Health Care (EDQM) The Society will continue collaborating with other patient organisations and individuals in Europe to raise awareness of sickle cell disease and quality care for sickle cell patients.

EVENTS: Annual General Meeting (AGM) Carlotta Olason and Comfort Ndive

Date: Saturday July 14, 2012 Time: (10am – 5pm) Venue: Emmanuel Centre Marsham Street Westminster London, SW1P 3DW

It Pays To Volunteer On the 8th of June, the Volunteer Centre Hammersmith & Fulham honoured two of our volunteers’ with awards for their dedication and commitment as volunteers to the Sickle Cell Society.

We celebrated with Mr Alan King in the photo below and Mr Andrew Njenga for a job well done.

____________________

The Second Patient and Carer Seminar on Adequacy and Safety of Blood Supply To be held in October 2012 For more information contact Carlotta Olason info@sicklecellsociety.org T: 020 8961 7795

10 | The Society News

L-R Mayor Councillor Belinda Donovan Hammersmith & Fulham, Mr Alan King and Councillor Marcus Ginn, Cabinet Member for Community Care Hammersmith and Fulham.

Sickle Cell Society | News Review

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SERVICE USER NEWS

Sickle Cell and I

My body Sickle cell loves to come ever ywhere with me. A few years ago it even managed to sneak its way into my suitcase and travel to Greece! A couple of days before the end of my holiday, it took over in full force. The worst thing was that my friends had to watch as I withered around in unbearable pain. I'm sure they felt out of their depth and maybe even scared because I did & it wasn't new to me.

Whilst they were flying home, I was stuck in hospital in a foreign land. This experience resulted in a genuine fear of holidays. Not of flying but of holidays abroad.

I once viewed sickle cell as the evildoer in my life, the thing that held me from my dreams but as time passed and wisdom grew, I soon realised that sickle cell would only succeed had I allowed it to. I now I chase my dreams and do not allow sickle cell to define me as it once did.

Sickle cell had a huge impact on my education. I missed a lot of school but somehow made it to university. However, after being ill during both my 1st and 2nd year exams, I decided I could no longer continue and started work.

My first full-time role was for a large asset management company and for a time I was doing really well but then my health took a real turn for the worse. The night before I was due to find out whether or not I had been successful in my promotion I remember praying that I wouldn't get the job! I knew I was more than capable, I knew I presented myself well during the inter view and I knew the job was mine. However, I was afraid that sickle cell would come in & take it all away from me. That's when I experienced depression as a result of my illness and had to leave the company.

News Review | Sickle Cell Society

My ribs ache My sides cramp My wrist pinch My heart sinks My back roars with me as I yell in pain.

I now know that sickle cell has no power over me. Yes, it can come and go as it

I know there’s a way I heard there’s a cure They change my blood ever y month Sickle cell is not me I know who I am I know what I am called to do.

pleases, yes, when it does come it can cause total chaos and yes, it will always sneak its way into my suitcase & have the ner ve to display PDA (Public Displays of Annihilation) rather than wait until I'm in the privacy of my own home, but ultimately the power is within me.

My pain is short term My future is long term My gift of life is what I cherish The love from my family is what keeps me going.

I’m learning to better take care of my physical, mental & spiritual well-being. I know when to say no, even if it means pulling out of something at the ver y last minute. I know my limits, I know when to stop & slow down and I know my triggers so I can avoid or at the ver y least better prepare.

By Flonah Bangalie

As a result of taking back control, I've since had an amazing holiday abroad and I'm looking for ward to flying somewhere hot again this year and I've a job that I love as it challenges me. I believe if it weren't for my previous experiences, I would have no real appreciation for LIFE! Now I know that if I LIVE IN FULL EXPECTATION, I can achieve anything.

By Adetoun Dosunmu

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SUPPORT GROUP NEWS

SICKLE CELL/ THALASSAEMIA SUPPORT GROUP OF BARKING, DAGENHAM AND HAVERING In January 2012, Dr. Justin Varney Consultant of Public Health Medicine for Barking and Dagenham PCT, approached the staff at the Sickle cell and Thalassaemia support Group of Barking, Dagenham and Havering to collate useful website information on sickle Cell and Thalassaemia disorders. This would then be placed on the Organisation’s website. Ultimately, this will make it easier for anyone i.e. Health professionals, teachers, parents, service users and the general public seeking information about the disorders at one stop website, instead of spending too much time searching for information. Having accepted the contracted, we had 3-4months to complete the project the staff had a meeting to plan how the project would be executed, who would be involved and the responsibility of each one.

Phase 1. Staff had to write, email and phone some members of the support group if they would be interested in becoming a member of a focus group for the project. It was impressive how some of the members expressed their interest. We had about 14 interested individuals though we required only six people.

A date for the first meeting was set up. The staff began collecting samples of online information and resources for review at our first meeting.

1st Focus group meeting they were asked how they seek information Some stated they had difficulties accessing information from the Internet for the following reasons.

1) Time consuming 2) Incompetent seeking appropriate online info search.

3) Locally no resource centre within the borough, library, Health Centres, Hospital and on line.

80% of respondent stated that there was no centralization of resources available on sickle cell and Thalassaemia within the Borough. People depended on tutorials, literature etc. for information while resources can be obtained sitting at your computer.

We also contacted GPs and Health Professionals to brief them about the project the benefit of it In terms of accessing a lot of online information in a shorter time, educating oneself and being in touch with others, locally, nationally and internationally.

Phase2. Website search for information on sickle Cell and Thalassemia. The samples were collected and send to Dr. Justin Varney to review after he had completed the review he then gave us the go ahead.

Phase 3. Mapping out categories and division of responsibilities between the staff Phase 4. Mapping out useful information and resource materials, irrelevant ones were discarded during the 2nd Focus group meeting. This was because some of the online information can be false and misleading. Causing confusion, stress and anxiety.

Phase 5. Hard copies were sent to GPs and Health professionals and then to Dr. Varney for comments.

Phase 6. We consulted with an IT technician on how to design a webpage to accommodate the collected resources on our website. He was keen and showed interest in the project. He started by uploading collected samples online and put them into categories.

We conducted a second review using the focus group, members of the support group, 2 GPs, Consultant Haematologist Claire Hemmaway, Jane Mattisson Sickle Cell Specialist nurse both from Queens hospital, Romford as well as the general public were asked to log onto our website and click on Resources and give their comments. Many found the website links very useful, educative as well as interactive. 500 web links collected. However, only 160 useful websites chosen, there were a lot of false information that were misleading.

For more information, contact us: Sickle Cell/Thalassaemia Support Group of BDH Ripple Centre, 121-125 Ripple Road, Barking, IG11 7FN 02085327330 or 07737295126 Email: bdh02@msn.com Charity Registration No: 1118508

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SUPPORT GROUP NEWS

A Reflection on the Development of a new Psychology Service in Leicestershire and Northamptonshire: A Local Achievement In July 2010 I was asked to develop a psychology service for adults with Sickle Cell Anaemia or Thalassaemia within Leicestershire and Northamptonshire.

This was part of a commission by the local network to recognise the need for access to a psychology service for these patients (approximately 200 in total).

I was dedicated given the very limited hours to set up and run the service. I would like to reflect on these experiences and what I have leant from both colleagues and patients during this process.

For the past 8 years I have worked as part of a small team of Clinical Psychologists in Leicester who provide psychological assessment, support and therapy for individuals who have psychological difficulties relating to a medical condition. However, blood disorders were a new area for me and I had a steep learning curve if I was to understand the needs of patients and how I might use my time most effectively. While many of my skills are clearly transferable to any setting (such as listening, understanding the impact of a health condition, and bringing psychological theory) it is always important to individualise what I do and understand the system in which I am trying to apply that knowledge.

I was very fortunate that the haemoglobinopathy team in Leicester were extremely welcoming and open to approaching problems from a new angle. I work most closely with a Haematology Consultant and Clinical Nurse Specialist who I believe have both been crucial to the success of the service. I spent some months attending their clinics, meeting the community support team, and visiting other key local services. We then decided that the best way to give access to psychology was to attend weekly medical clinics as a regular member of the team. We hoped that this would reduce any stigma, and everyone could see that I’m not scary and am not going to lock them up (which is what people sometimes fear)! By talking to people in a familiar setting I have found that they often share difficulties that they would otherwise have had no opportunity to explore. I have been struck that by taking a new approach, people can make changes and integrate new ways of thinking by providing very little psychological intervention – asking the right questions, responding with care and without judgement, seeking a way forward for some and just acknowledging struggles for others. There are some specific things that we have started to help with, such as assessing difficulties after a stroke, working with the struggle to take regular medication, and managing long term low mood, but for most it is the daily reality of coping with a long term condition. However, I have also learnt from patients how many people manage to get on with the best quality of life they can within the bounds of their physical limitations; going to work, caring for a family, studying abroad, exercising regularly, as well as coping with transfusions, recurring pain, or uncertainty about the future. We have definite plans to improve our transition service, to enable adolescents to take over their own care with more holistic support. We have also taken our service to a satellite clinic in Northamptonshire, which was well received, and we intend to build on this. I would love to develop training and support for staff but cannot spread myself too thin! We are a small regional team but our patients deserve the holistic care that other larger services have been able to provide for some time.

We all have psychological difficulties, but some people have more challenges presented to them than others; help and support with that can make a big difference to both their medical conditions and their lives outside the hospital clinic.

Dr Joanne Herdman Clinical Psychologist

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SERVICE PROVIDER NEWS

NHS Sickle Cell and Thalassaemia Screening Programme News New publications from the Screening Programme The last few months have seen the launch of new publications from the NHS Sickle Cell and Thalassaemia Screening Programme. Tests for

Dads, aimed at encouraging more men to come for screening, was launched in February at a joint event with the Sickle Cell Society at the Africa Centre in London, following a showing of the Family Legacy DVD. About 100 people attended the event, which included a discussion, led by Iyamide Thomas, on how to engage more men with screening for sickle cell. In April, the Programme launched its Information for Healthcare Professionals leaflet. Aimed at all health care professionals involved in screening for sickle cell and for thalassaemia, the leaflet helps to explain to professionals their role in relation to the patient pathway. Both leaflets can be found on the Programme website: http://sct.screening.nhs.uk/leaflets

Dayglo Project wins award Dayglo, the theatre project produced by Y touring with its strong sub plot about sickle cell has won the STEM Category of the National Science & Engineering Week Event Awards 2012. Aimed at children in school year nine, the project has helped to raise awareness and knowledge of sickle cell amongst this age group. The Sickle Cell and Thalassaemia Screening Programme helped sponsor the theatre project and was closely involved in the development of the key resources about sickle cell. The project scored highly in all judging criteria. The Programme also put forward experts who, together with cast members answered questions at the end of each production.

The judges were particularly impressed by the links the production made between the science and performing arts and by the efforts made to involve the whole community via screenings, performances, talks and online resources. To find out more visit: http://www.theatreofdebate.com/

NHS Atlas of Variation in healthcare – children and young adults is now available.

For the first time, it is possible to see the variations in healthcare across the breadth of child health services provided by NHS England.

This will enable clinicians, commissioners and service users to identify priority areas for improving outcome, quality and productivity.

Visit http://www.rightcare.nhs.uk/index.php/atlas/children-and-young-adults/ And click on the right hand menu. See Map 10 for details on the number of emergency hospital admissions for sickle cell disease per individual patient aged 0-17 years by PCT: 2007/08 – 2009/10.

Specialist Commissioning In March 2012, Chief Medical Officer Sally Davies endorsed the launch of The National Haemoglobinopathies Project: a guide to effectively commissioning high quality sickle cell and thalassaemia services at the Houses of Parliament. Published by the East Midlands Specialised Commissioning Group, the project, supported by the NHS SCT Screening Programme, provides a framework for commissioning care for babies once a baby is diagnosed with a haemoglobinopathy. The project report contains a number of documents which look at the standards that need to be achieved in commissioning, how the Cont’d next page...

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SERVICE PROVIDER NEWS service should be delivered together with an equality impact assessment and a model service specification. The document looks at patient lifespan pathways and their care needs and was closely informed by a working group of patients, clinicians, public experts and commissioners. Download the report here: http://sct.screening.nhs.uk/cms.php?folder=2558

Specialist Nurses – Roald Dahl project In May, the SCT Programme will launch its report, Exploring the Value of Sickle Cell and Thalassaemia Specialist Nurses, on the benefits of specialist nurses for sickle cell and for thalassaemia. Supported by the Roald Dahl Marvellous Children’s Charity, the report is the culmination of a seven month project, chaired

by Elizabeth Anionowu, emeritus professor nursing (retired). The project included work by independent research analyst, Alison Leary who looked at the complexity and value of nursing by examining detailed activity by nurses in the community and in acute hospitals. She found that sickle cell and thalassaemia nursing practice is highly complex and involves many different inter-relational activities. Many of the nurses in this study managed caseloads through the different age ranges and with very varied patient needs, reflecting the lifelong nature of these inherited conditions as well as with the wide variation of severity between patients and also within an individual’s life (particularly for sickle cell).

Statement on ‘preconception’ testing for sickle cell and thalassaemia The UK National Screening Committee (UKNSC) has recently put out a statement on genetic carrier testing for sickle cell and thalassaemia. The UKNSC provides population screening for a range of genetic disorders in pregnancy and newborn periods. Usually the request for such a test is made as part of planning to have a baby, prior to having an operation or after finding out that a family member has or carries a gene for sickle cell or thalassaemia. However, the UKNSC recognises that obtaining information on carrier status is not confined to these occasions and the request can be made at any time in life. Their preconception statement therefore advises clinicians on testing outside of these periods. Testing to see if someone carries the gene for sickle cell and thalassaemia is a decision that the individual and their clinician should discuss. The full document is available on the NHS Sickle Cell and Thalassaemia Screening Programme site via the link below: http://sct.screening.nhs.uk/standardsandguidelines

"Trust me when I say I am in pain" The NICE Guideline on managing Sickle Cell Crisis in Hospital is here!

Published on the, 27 June 2012, the long-awaited guideline from the National Institute for Health & Clinical Excellence will address a longstanding source of NHS complaint from sickle cell patients and their families- they are not believed when they complain of pain. In the new guideline , NICE has recommended that acute painful sickle cell episodes should be treated as acute medical emergencies, and analgesia offered to all patients within 30 minutes of presentation. (remindful of the Sickle Cell Society’s Adult Standards 2008).

For the full guideline, visit http://www.nice.org.uk/CG143 and www.sicklecellsociety.org/news Judging from the responses, the Guideline. product of a multi-disciplinary collaboration involving doctors, nurses, scientists, psychologists, managers, patients and other interests, is a major milestone in the journey to “turning a sickle into a smile”.

The Sickle Cell Society had this to say: (("Trust me when I say I am in pain" is a frequent request we hear from our members. Therefore, we particularly welcome the guiding ethos that for treatment to be responsive to the needs of the patient, they or their carer must be considered as an expert on their condition. In particular we laud the statement that: • Throughout an acute painful sickle cell episode, regard the patient (and/or their carer) as an expert in their condition, listen to their views and discuss with them: - the planned treatment regimen for the episode; -treatments received during previous episodes - any concerns they may have about the current episode; -any psychological and/or social support they may need.

“We look forward to opportunities for collaborating with doctors, nurses and NHS managers to ensure that these guidelines are put into practice.”)), Mrs Anne Welsh, Chairperson Sickle Cell Society.

Hellen Adom, patient/carer member on the guideline development group said: “I was diagnosed with sickle cell disease at birth, although I didn’t realise my condition until I was 16 (I’m now in my 40s), so I know how incredibly painful and distressing an acute sickle cell episode can be. The guideline development group found the firsthand experience of sickle cell disease I was able to bring to the table extremely useful in understanding the condition from a patient’s perspective and thereby enabling the development of a guideline that properly reflects the needs of patients, as well as being helpful to healthcare professionals in hospitals involved in the management of those with sickle cell.”

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SERVICE PROVIDER NEWS As a longstanding advocate for patients empowerment, I was particularly privileged to have worked with the Guidelines Development Group (GDG). To me, the NICE GDG was exemplary in the application of the Salzburg Declaration (December 2010) on Shared Decision Making in healthcare, which recognises that the 21st Century must be the “Century of the Patient, one of: better doctors, better patients, better decisions for healthcare by 2020” (Salzburg Global.org/go/477 ; Gray, M, Gigerenzer, G. Strungmann Forum Reports, London 2010).

We can only now look forward to better treatment for patients in acute sickle pain when they arrive hospital.

Dr Asa’ah Nkohkwo FRSPH Nationwide Adviser, Comprehensive Care & Member NICE GDG on Sickle Cell Crisis.

APPG Summer Update – May 2012 The All-Party Parliamentary Group on Sickle Cell and Thalassaemia (APPG) is a group of MPs and Peers who are committed to improving the lives of people affected by the conditions. The Sickle Cell Society provides direction to the group, along with the UK Thalassaemia Society (UKTS) and other stakeholders.

Kicking off the APPG’s 2011/2012 work was the Parliamentary Reception on 21st June in conjunction with the NHS Screening Programme to celebrate 10 years of the Programme. Chair of the Sickle Cell Society, Anne Welsh, delivered a keynote speech, as did Diane Abbott MP (APPG Chair), Trevor Phillips (Chair of the Equalities and Human Rights Commission) and Gabriel Theophanous (President UKTS).

This high-level event also marked Sickle Cell Awareness Month and International Thalassaemia Day, making it a very significant day for the APPG. Testament to this was the large audience the event attracted, including 21 Parliamentarians and over 100 other high-profile guests, including the President of the Royal College of Paediatrics and Child Health, Prof Adrian Newland. Lenny Henry and JB from boy band JLS were also present.

At the APPG roundtable meeting in December 2011, patients living with sickle cell disease and thalassaemia discussed with Shadow Minister for Employment, Rt Hon Stephen Timms MP, and other stakeholders some of the issues they faced in gaining and retaining employment related to their condition. Topics debated included the link between education and employment, the importance of employer flexibility, and the apparent lack of government attention to these issues, which many felt fell between the remits of health and employment agencies. The meeting also addressed how important it was for employers and Employment Support Allowance assessors to understand the fluctuating nature of these conditions.

APPG Chair Diane Abbott MP agreed to a number of follow up actions to address patients’ concerns, including a cross-party letter to the Department for Work and Pensions and a letter to the DH to request that further information be available to employers explaining the conditions and the workplace adjustments necessary to foster safety and productivity among otherwise highly capable workers with these conditions.

A cross-party letter from a number of APPG officers was also sent to Chief Executives of high and medium prevalence trusts requesting that out-of-hours transfusion services be implemented in their local area, or restating that these services were important and appreciated where they were currently in place.

The APPG Secretariat is collecting the responses and a short summary of findings will be collated in order to establish whether the APPG needs to take further action on this issue.

Further to this important work, the APPG has also recently been investigating the apparent lack of research into haemoglobinopathies in the UK with a view to promoting research in this area. The APPG roundtable meeting on 13th March 2012 brought together key stakeholders, including Professor Dame Sally Davies (Chief Medical Officer and Chief Scientific Adviser to the Department of Health), Anne Welsh Chair of the Sickle Cell Society, Dr Anne Yardumian and Dr Paul Telfer (UK Forum on Haemoglobinopathies) and Lord Smith of Clifton (APPG Vice Chair) to discuss establishing an Academic Chair in haemoglobinopathies in the UK. A range of potential barriers to establishing a Chair and improving research in this area were discussed at the meeting. Encouragingly, Dame Sally Davies noted that the haemoglobinopathies model was a potentially strong model in terms of attracting funding, but that understanding the funding landscape was essential first in order to focus only on the most appropriate funding bodies.

In light of these discussions, Lord Smith of Clifton agreed to set up a sub-group of experts to begin devising a haemoglobinopathies research strategy. He also expressed the importance of political pressure and is therefore, alongside APPG Chair Diane Abbott MP, setting up a meeting of parliamentarians with an interest in this area in order to engage the Department of Health at Ministerial level to address this issue.

To top off a busy spring period, the APPG also collaborated with the Midlands and East Specialist Commissioning Group for a small Parliamentary Reception in order to celebrate the work of the National Haemoglobinopathies Project and launch the commissioning guidance for haemoglobinopathies, at which Dame Sally Davies spoke again.

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SERVICE PROVIDER NEWS The APPG on Sickle Cell and Thalassaemia provides an important voice for patients in the corridors of power. You can help raise the profile of sickle cell disease in Parliament by writing to your MP and encouraging them to join the APPG. See the attached page for suggestions on how to write to your MP. For suggestions on APPG agenda topics, please email to: info@sicklecellsociety.org FAO: Anne Welsh Chairperson Sickle Cell Society.

Secretariat All-Party Parliamentary Group on Sickle Cell and Thalassaemia Tel: 020 3397 3300

News From Parliament SICKLE CELL, SPARKS & BARNADO’S REVISITED - LATEST INTERVENTION @ THE HOUSE OF LORDS

By BARONESS FLOELLA BENJAMIN For the complete speech, ps ref: Hansard of 21 June 2012 (also see Winter News Review, 2010....)

“My Lords I too express heartfelt thanks to My Noble Friend Baroness Scott for securing this important debate and for her excellent speech. My Lords, the voluntary sector has a unique role in reaching out to every area in society, the most disadvantaged and vulnerable groups, as well as funding vital medical research. I will like to highlight the voluntary contribution made by three of the numerous charities I have been involved with over many years, so I declare an interest (in the Sickle Cell Society, Sparks and Barnado’s)...

My Lords during the Health and Social Care Bill it was stated that the voluntary sector will be relied upon in the crucial developments that the NHS and Public Health faced over the coming years.

The Sickle Cell Society does just that by helping to (support and) articulate the concerns of people living and struggling with sickle cell disease. But, even though the Sickle Cell Society’s “Community Hub” model was commended, (by the DH), their application for section 64 funding was turned down despite the potential of inequality that will arise when the Specialist Commissioning takes effect. Their proposal would ensure that the interest of people affected by sickle cell disease continued to be counted.

Baroness Floella Benjamin

My Lords, The Sickle Cell Society, its clients and the wider BME communities are concerned about this situation and I ask the Government to meet with interested parties to discuss how the Sickle Cell Society can continue to support their important work within the framework of the appropriate NHS Commissioning Board Authorities…

My Lords we must treasure and preserve our Voluntary sector and support the valuable contribution it makes to our society. As a country we have a rich tradition of giving and volunteering and in times of hardship and financial turmoil it is often the only source of help and respite for those in difficulty.

So let us ensure our policies help rather than hinder these organisations.”

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RESEARCH

York University leads two new important and exciting research projects We are a team of researchers based at York University, carrying out two qualitative research projects in partnership with The Sickle Cell Society and UK Thalassaemia Society, related local charities and NHS partners. Both the projects aim at understanding the experiences of individuals who are ‘at risk’ of having/ or have been identified as a carrier of Sickle Cell or thalassaemia disorders, the impact on life choices and the level of support received from statutory and voluntary sector organisations. Our research deals with important ethical, social and pragmatic issues of equity and accessible care within the broader context of the aims of the National Sickle Cell and Thalassaemia Screening Programme.

The first project, Involving fathers in ante-natal screening for sickle cell disorders: improving informed decision, is funded by Research for Paitent Benefit (RfPB) One of the aims of the national Screening Programme is to provide timely ante-natal sickle cell screening to all couples. If a mother is identified as a carrier, her partner should ideally be offered a test, enabling them to make an informed choice on the future of the pregnancy. However, we don’t know why only less than eight percent of eligible fathers are tested during ante-natal care. This project, involving focus-group discussions with prospective mothers and fathers; interviews with fathers otherwise involved in their partner’s antenatal process; and discussions with practitioners and commissioners, will explore the reasons for poor uptake. By working with the NHS Screening Programme, local healthcare professionals, voluntary organisations and

local communities, the research findings will be used to develop more sensitive policy and practice for better engagement with fathers during the ante-natal screening process.

The second project, ‘Living with sickle cell or beta thalassaemia trait’, is funded by the Economic and Social Sciences Research Council ESRC This project aims to explore how individuals make sense of ‘carrying’ a sickle cell or thalassaemia trait, the impact it has on their life-choices and relationships; and the level of support available across statutory and voluntary sectors of care. The team will conduct focus group discussions and interviews with trait carriers at different stages of their lives, and family members who know a trait carrier to understand the short and long term impact of being identified as a ‘trait carrier’; how this information is shared within extended family and how it impacts on decisions related to reproductive choice (choices of a life partner and when and with whom to have children). We know that there are an estimated 240,000 sickle cell and 214,000 thalassaemia trait carriers in the UK. The Newborn Screening Programme is likely to pick up an increasing number of trait carriers at birth. This research will help us understand the needs and networks of support required by many of these thousands of trait carriers.

If you would like to take part in either project, please contact either Maria Berghs (01904321612) or Sangeeta Chattoo (07891561094) at the University of York.

Home Monitoring of Oxygen Levels for Sickle Cell The Sickle Cell Society is collaborating with the University of Nottingham and University College London on a project that aims to develop new technology for Sickle Cell Disease. The researchers are developing a device that will allow patients to measure their blood oxygen levels and then to send this to their clinic using a mobile phone. An app is also being developed that will allow patients to record sickle cell symptoms such as pain and fatigue. It is hoped that eventually this technology may provide a means of providing patients with treatment before a crisis occurs, ideally preventing the crisis or at least reducing the amount of pain.

On 28th April a group of service users were invited to an event at the Sickle Cell Society to hear more about the new device and to provide their opinions on how it should be designed. A lot of the discussion focused on the realities of living with SCD, and the impact of crises in terms of pain, unexpected hospitalisation and fatigue on people’s social lives and ability to work was a common theme.

The researchers reported that the input from the service users was extremely helpful in terms of helping them decide how the device should be designed and the information it should collect.

They are currently incorporating the suggestions into the next version of the device and will then collect more feedback on this. A trial of the device to evaluate its effectiveness as well as its usefulness to patients is planned for later in the year.

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RESEARCH

By Jennifer Martin & Comfort Ndive

Sickle Cell Disease News Update Pioneering stem cell treatment for sickle cell is a UK first Stem cell transplant treatment used for sickle cell patients has been successful in curing 23-year-old Remmy Kamya of this crippling disease.

The treatment, which is a UK first, was led by Dr Mickey Koh, director of stem cell transplants and consultant haematologist at St George’s Hospital in London.

Sickle cell anaemia is an inherited, lifelong disease and is the most common of the hereditary blood disorders. Red blood cells are produced by stem cells within the marrow found inside the bones. Healthy red blood cells are biconcaved discs which can bend and flex easily. In those with sickle cell disease, faulty stem cells produce red blood cells that are crescent shaped. These are rigid, unable to squeeze through smaller blood vessels, and prone to causing blockages that deprive parts of the body of oxygen, leading to periods of intense pain.

Management of sickle cell disease has always focused on treating symptoms with the only cure up until now being a stem cell transplant, where the abnormal red blood cells are replaced with new healthy ones from a donor.

For more information visit http://www.stgeorges.nhs.uk/press270.asp

Cell transplant cures sickle cell disease A Chicago Woman Cured Of Sickle Cell Disease at 33. Chicagoan Ieshea Thomas is the first Midwest patient to receive a successful stem cell transplant to cure her sickle cell disease without chemotherapy in preparation for the transplant. University of Illinois Hospital & Health Sciences System physicians performed the procedure using medication to suppress her immune system and one small dose of total body radiation right before the transplant.

The transplant technique is relatively uncommon and is a much more tolerable treatment for patients with aggressive sickle cell disease who often have underlying organ disease and other complications, says Dr. Damiano Rondelli, professor of medicine at UIC, who performed Thomas's transplant.

The procedure initially allows a patient's own bone marrow to coexist with that of the donor. Since the patient's bone marrow is not completely destroyed by chemotherapy or radiation prior to transplant, part of the immune defense survives, lessening the risk of infection. The goal is for the transplanted stem cells to gradually take over the bone marrow’s role to produce red blood cells -- normal, healthy ones.

For more information, visit: http://hospital.uillinois.edu/News/CHICAGO_WOMAN_CURED_OF_SICKLE_CELL_DISEASE

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FUNDRAISING

A Tale of Two Marathons Hello, my name’s Justin. I’m 47 years old, and I live in Manchester with my wife and our three children. Some members of my immediate and extended family have sickle cell trait, which will not normally affect them directly, but means that there’s a chance that their children will have the more serious sickle cell anaemia disorder if their partner also has the trait. I took up running about five years ago, and have been using sponsored events to raise money to support the valuable work of The Sickle Cell Society. I started with 10K runs, and have graduated to half and full marathons as I’ve become fitter and more confident in my running abilities.

On the last two Sundays I took on a new challenge by running the London Marathon and the Greater Manchester Marathon back to back. London had been a long time coming, as I was meant to run it last year, but got knocked off my bike and injured, and had to withdraw and defer my place to this year. My family wanted to come and support me, so we all travelled down by train the day before the run and stayed with relatives. On the morning of Sunday the 22nd of April I made my final preparations and left early to get to the start.

The weather forecast had been looking pretty miserable with cloud and rain, but on the day the conditions were ideal; clear and sunny and cool.

I set off from Greenwich with 38,000 other runners and the first half of the marathon seemed to pass very quickly. We’d planned several points on the route where my family would try to see me. It was a real incentive for me to get round, and a welcome boost when I did find them amongst the enormous and noisy crowds. I started to get a stitch in my side from around mile 16, and this slowed me down a bit as I tried to run through it.

It was a huge relief to eventually run the final stage of the marathon along the Mall, and I felt a tremendous sense of elation as I crossed the finishing line 3 hours 41 minutes and 9 seconds after starting, a new personal best time! It was also great to meet up with my family and share a well deserved meal with them. My daughter took my finisher’s medal in to school the next day, whilst my son proudly wore the reflective sheet that I’d been given after finishing on the way in.

Manchester the following Sunday 29th April was an entirely different run.

The weather was wet and windy and cold, and my legs were still feeling the effects of London.

I set off with around 8,000 other runners this time, not really knowing whether my legs would just pack up in the first few miles. Luckily, I didn’t feel under any pressure to run fast after London, and had allowed myself several layers of clothing as well as gloves and a hat, so I was much more protected from the harsh conditions than some of the other runners who were just wearing shorts and vests! After the first five miles my legs seemed to loosen up a bit, and I settled in to a rhythm. Manchester being my home town, I knew lots of people running, and had some conversations along the way, mainly about the cold. At one point after half way, we were running down a rural track, trying to avoid the growing number of puddles, when the whole path became submerged, and we had to wade for about a hundred metres. As I passed the 20 mile mark, I became more confident that my legs were going to stay the course, and pushed a bit to arrive home in just under 4 hours. Not bad considering! I haven’t had time to check yet, but know that a large number of runners had to pull out due to the atrocious weather.

My JustGiving page will be open for a while yet, so if you fancy adding to the donations to help support the work of The Sickle Cell Society, please visit it at www.justgiving.com/Justin-Hayes. There’s also a new text sponsoring facility. Just text CPQJ83, and an amount to 70070 to donate at no extra charge to yourself or the charity. For example, texting CPQJ83 £1 to 70070 will donate £1 to The Sickle Cell Society.

Justin Haynes

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FUNDRAISING

London to Paris Cycle Ride In Memory of My Dear Son Lukuman’s 5th Year Anniversary I cycled from London to Paris from 27th to 31st July 2011 to raise money for the Sickle Cell Society.

I took on this challenge in memor y of my late son Lukuman who died on 1st May 2006.

Lukuman had sickle cell anaemia.

However, despite his illness Lukuman was kind-hearted, loving and did not complain about his illness. He was loved dearly by his family, friends and colleagues. When Lukuman died my father said that nobody would miss Lukuman like he would - the following year my father died. So is life. However, I am grateful to Jehovah and His Son, Jesus, for the comfort given to our family.

The trip was organised by Skyline (excellent crew!) who required a minimum sponsorship of £1,350.00. I have exceeded this amount from the many kind donations and have raised £4,945 for The Sickle Cell Society.

I would also like to take this opportunity to thank my husband, our children (Abdullai, Zainab, Anya, Nkem and Ify), Sandy (Abdullai's partner) and Danny (Zainab's partner) for meeting me at the end of my journey in Paris - needless to say I cried. My late son, Lukuman, would have been proud of us all.

Lukuman Babatunde

Mrs Patricia Onyearu

Also in memory of you dad, the 'Man For All Seasons', who taught me to cycle.

English Half Marathon Running? Me? No way! But in the last three years I have run two 10k’s and then on 18th September 2011 I took part in the English Half Marathon which took place in Warrington.

I decided to do this for sickle cell as I know a few people who suffer or have died from this disease. I am so happy to say that I completed the half marathon in 2 hours 19 minutes and 55 seconds!

I am so blessed to have been encouraged by friends, family and colleagues; it was such an overwhelming feeling when I crossed the finish line. I have also raised £1,031.25 in sponsorship including gift aid so far for The Sickle Cell Society which is was fantastic!

Paulette Lemard

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FUNDRAISING

Metropolitan Police Crime Museum Donates £1,247.90 New Scotland Yard is the headquarters of the Metropolitan Police in London. There has been a Crime Museum in this building since 1874 and it contains exhibits from many of the most famous cases dealt with over the course of the last 100 years.

After each tour, visitors often like to make a charity donation. In the past, this has been donated to cancer research.

I was given the opportunity to become Curator of the Museum for a year. I decided that during this time everything I collected would be for the Sickle Cell Society. I know from personal experience how devastating this disorder can be as my niece, Nicky aged 20, died from it in 2002.

David Thompson, Detective Sergeant Crime Academy New Scotland Yard with Kalpna Patel the Sickle Cell Society Fundraising Manager.

Giveonthemobile® Giveonthemobile® is a new mobile app that enables you to donate to Sickle Cell Society via your smart phone!

Simply download the app today to donate to us, find out where your money goes and keep up to date with our latest events.

To download the app for free today follow one of the three simple ways: 1.

Go to your phones app store and search giveonthemobile

2.

Type gotm.mobi into your mobile phones web browser

3.

Scan the QR code below

There are two choices of payment via SMS for £1, £3 or £5 and the amount will be added to your monthly phone bill or you can donate through Paypal for £15, £25, £50 or above but you need a Paypal account. Please download the Giveonthemobile® app and make a donation now!

News Review | Sickle Cell Society

Fundraising | 23

SICKLE_CELL_SOCIETY Newsletter JULY 2012_Pages_12/11 11/07/2012 12:05 Page 22

FUNDRAISING

Completed Charity Skydive even with severe fear of Heights Hi my name is Toye Akinwale and I work as a Senior Project Manager for an investment bank. I play football, go to the gym regularly and am proud to say that I am a diehard Chelsea fan. What most people don’t know is that I also have sickle cell Trait which although it does not affect me, I know firsthand the effects of this blood disorder as my younger brother has the full blown condition. I recently had the desire to do something positive for the cause and help to raise money for the Sickle Cell Society. After much thought, I decided to do something challenging. I have a severe fear of heights and travelling on a plane is usually a bad experience for me. As a result, I tend not to look forward to going on holidays most times.

I decided to jump out of a plane in mid air to raise money.... yes – skydiving! Booked the skydive jump, created a page on "JustGiving" and started emailing all my friends and colleagues at work to sponsor my jump. My severe fear of heights did not kick in till the morning of my jump and the closer I got to the venue the more terrified I became. What a scary experience but glad to say I went through with it and jumped 12,000ft out of the plane. WOW! I landed safely and in all I managed to raise £1,100 for the Sickle Cell Society.

Toye Akinwale

Please donate towards our Annual Children’s Holiday Fund The Sickle Cell Society provides 30 Children on a one week, free, fun packed holiday accompanied by 15 dedicated Carers. The children’s holiday approximately costs £15,000 each year and The Sickle Cell Society urgently needs your help to raise this amount for the August 2013 holiday.

Please donate now by using your mobile phone, text CFUN07 and the amount you wish to donate i.e. £2, £5 or £10 and text to the number 70070. For example if you would like to donate £10 then just type CFUN07 £10 and text to 70070.

You will then be given the opportunity to add Gift Aid, meaning The Sickle Cell Society could benefit an extra 25%.Your donation will be deducted from your mobile phone credit, or added to your monthly phone bill.

No additional charges apply, for further information please visit www.justtextgiving.co.uk.

To reach our target we need 1,500 people to donate £10 each or 3,000 people to donate £5 each.

Every penny counts so please donate whatever amount you can so we can provide children affected by sickle cell disease a well deserved break.

Thank you for your kind generosity.

Kalpna Patel Fundraising Manager

24 | Fundraising

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter JULY 2012_Pages_12/11 11/07/2012 12:05 Page 23

FUNDRAISING

Up for a challenge? Then come and take part in the Nike Run to the Beat Half Marathon!

Nike Run to the Beat is a Half a Marathon with a difference. A huge array of DJ’s performing on the day, with 14 Music Stages scattered around the course so you can Run to the Beat! The course is 13 miles which starts and finishes at the famous O2 Arena and the route takes you through the Royal Arsenal Barracks and the stunning Greenwich Park. You can walk, jog or run the route as long as you finish the course within 3.5 hours.

The Sickle Cell Society has 10 places available for the Nike Run to the Beat Half a Marathon taking place on Sunday 28th October 2012 starting at 9.45am. Each runner will receive a Chip Timing, T-Shirt with your running number, race pack and a Certificate. Please show your support by running on behalf of The Sickle Cell Society and join our team of runners. A charity meeting point before and after the race will be organized so you can meet the rest of the team.

Please contact Ms Kalpna Patel, Fundraising Manager on 020 8963 7793 or email kalpna.patel@sicklecellsociety.org for further information and a registration pack.

JustTextGiving It costs the Sickle Cell Society approximately £3,600 each quarter to produce this newsletter.

If you found this newsletter informative then please donate now so that we can continue to provide news right to your doorstep.

Donate now by using your mobile phone, text NEWL11 and the amount you wish to donate i.e. £2, £5 or £10 and send to 70070. For example if you would like to donate £10 then just type NEWL11 £10 and text to 70070. ,

You will then be given the opportunity to add Gift Aid, meaning The Sickle Cell Society could benefit an extra 25%.Your donation will be deducted from your mobile phone credit, or added to your monthly phone bill. This service is provided free to us thanks to JusttextGiving

by Vodafone. For further information, please visit www.justtextgiving.co.uk.

To reach our target, we need 360 people to donate £10 each, 720 people to donate £5 each or 1,800 people to donate £2. Every penny counts so please donate whatever amount you can.

Thank you for your generosity and your help in keeping this newsletter alive.

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Fundraising | 25

SICKLE_CELL_SOCIETY Newsletter JULY 2012_Pages_12/11 11/07/2012 12:05 Page 24

The Sickle Cell Society governance team PRESIDENT & PATRONS

BOARD OF TRUSTEES

MEDICAL ADVISORS

President: Mr Michael Parker CBE, FCCA

Anne Welsh BSc, MSc (Chairperson) Ms Samantha Cumberbatch, (Vice Secretary) Mr Junior Kebbay (Company Secretary) Mr Babatunde Akintola BSc, MSc, (Treasurer) Mr Kingsley Ibeke (Vice Treasurer) Ms Sally-Ann Ephson Mr Joseph Ezeakunne Mr Kye Gbangbola MBA Mr Korku Mifetu Mr Narcisse Kamga Mr Foluso Dawodu

Dr Nellie Adjaye Professor Dame Sally Davies CMO Dr Mark Layton Dr Norman Parker Dr David Rees Dr Ade Olujohungbe Dr Phil Darbyshire Dr Allison Streetly

Patrons: Professor Elizabeth Anionwu CBE (Co-founder Sickle Cell Society) Mrs Sherlene Rudder MBE (Co- founder Sickle Cell Society) Mrs Millicent Simpson (Co-founder Sickle Cell Society) Baroness Floella Benjamin OBE, DL of Beckenham Lord Paul Boateng of Akyen Sir William Doughty Mr Derrick Evans Mr Lenny Henry OBE Dr. Nola Ishmael OBE Mr Clive Lloyd OBE Mr Trevor Phillips OBE

SCIENTIFIC ADVISORS Dr Mary Petrou Professor Simon Dyson Dr Kofi Anie

Operational Manager: Patrick Ojeer

Information Quality Statement The Sickle Cell Society adheres to appropriate standards in the production and dissemination of information:

traditional grading system (p9, Standards for the Clinical Care of Adults with Sickle Cell Disease in the UK, Sickle Cell Society, July 2008):

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. However, all patent information relating to health and social care in the news review has been produced in accordance with the requirements of the information standard to which the Sickle cell Society is accredited.

Grade A (highest level of confidence): statement is backed by at least one randomised trial as part of the body of the literature of overall good quality and consistency addressing the specific issue;

The above said, information of a medical nature from us is always screened through our

26 | Society news and events

Finally, we would advise patients to always refer to their medical doctor on matters in relation to their Healthcare.

Grade B: statement is backed by wellconducted clinical studies but no randomised clinical trial on the issue; Grade C (lowest level): statement is backed mainly by expert opinion, albeit of respected authorities.

Sickle Cell Society | News Review

The Sickle Cell Society is grateful to the following sponsors

Donations Donation £200 and Over From 26 November 2011 - 15 June 2012 Payroll Giving......................................................................................................£8,773.50 ISON Harrison Solicitors - Legacy (Jane Belinda Pickup)......................................£7,484.58 Online Giving ....................................................................................................£4,974.81 Leroy Campbell - Hastings Half Marathon..........................................................£2,835.00 The Odd Fellows.................................................................................................£1,585.00

Novartis Pharmaceuticals UK Ltd Department of Health

Bullers Wood School...........................................................................................£1,528.28 AES ElectricLtd - Rubin Redhead ........................................................................£1,000.00 AGAPE Ministries .................................................................................................£1,000.00 Alma Jean Henry Charitable Trust ......................................................................£1,000.00

London Councils Roald Dahl’s Marvellous Children’s Charity TerumoBCT

Johnson Matthey ...............................................................................................£1,000.00 Jermaine Redhead............................................................................................£1,000.00 The Big Give.org.uk ...............................................................................................£813.64 Sergeant David Thompson (New Scotland Yard Metropolitan Police) ...................£800.00 Relief Chest Scheme - Teddington Lodge ............................................................£750.00 Lucreta LaPierre.....................................................................................................£641.55 Paulette Lemard ...................................................................................................£620.00 Anonymous...........................................................................................................£500.50 Capacitas Limited - Andy Bolton ..........................................................................£500.00 Brethren of the Borough of St Pancras - Arnold Hunter...........................................£500.00 Yvonne Woodhouse - Ex Fundraising ....................................................................£500.00 Easthood Park Limited...........................................................................................£500.00 Sir William Doughty ................................................................................................£500.00 Sacred Heart of St Mary's School ..........................................................................£465.00 East Midlands Airport.............................................................................................£422.00 Prendergast - Hilly Fields College ..........................................................................£414.10 St John with St James and St Paul ........................................................................£400.00 Maureen Smith......................................................................................................£400.00 Church of God in Christ (UK) .................................................................................£400.00 East of England Co-operative Society ..................................................................£372.30 Willesden HASSRA ..................................................................................................£343.00 Central London Comm Healthcare - Ethnicity & Inspire Team..............................£305.00 Hastings FACE .......................................................................................................£300.00 Waitrose Ltd - Westfield Branch .............................................................................£250.00 Acton St Mary's Parochial Church Council ............................................................£226.81 R Karen Clarke ......................................................................................................£200.00 Communications Workers Union ...........................................................................£200.00 Liverpool Society of Anaesthetists..........................................................................£200.00 Pell & Bales Limited - Monique Duchen ................................................................£200.00 League of Friends (UK) Grenada ...........................................................................£200.00 The Sickle Cell Society would like to thank all those who have donated. Please note we have only mentioned donations of £200 and over as space would not permit us to mention every donation.

News Review | Sickle Cell Society

Sponsors and Donations | 27

About the Sickle Cell Society • Sickle Cell Awareness month in the UK is in July • The Sickle Cell Society is the principal health charity in Britain working for people with sickle cell disease. It was first set up in 1979 by a group of patients, parents and health professionals who were all concerned about the lack of understanding and inadequacy of treatment for people with sickle cell disease.

• The Society’s mission is to enable and assist individuals with sickle cell disease realise their full economic and social potential. This is achieved by improving opportunities for sickle cell affected individuals and families by raising public awareness through education and advocacy, together with the provision of direct welfare services, assisting in research and lobbying.

• The Sickle Cell Society believes that every individual with sickle cell disease has the right to quality care. This can be achieved if funding is made available to educate health carers and other professionals about the condition. The Society aims to lobby for adequate resources to provide this. www.sicklecellsociety.org

About sickle cell disease • Sickle cell disease consists of a range of conditions – some more serious than others.

The most serious form is sickle cell anaemia but there are other forms of the condition such as sickle haemoglobin C disease and sickle beta thalassaemia.

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• The conditions affect the normal oxygen carrying capacity of red blood cells.

The symptoms can include severe anaemia, intense pain, damage to major organs and infections. Although there is no routine cure for sickle cell, patients can be supported to manage their pain, and regular monitoring can help to avoid life threatening complications such as stroke.

Please support our work by becoming a member of the Sickle Cell Society!

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SCS News Review

Sickle Cell Society

We would like to know your news and views for the next edition, also your comments on this publication.

54 Station Road, London NW10 4UA T: 020 8961 7795/4006 F: 020 8961 8346

Please send your comments to info@sicklecellsociety.org

Editors Carlotta Olason, Anne Welsh, Dr. Asa’ah Nkohkwo, Iyamide Thomas, Baba Odeyemi, Lynne Fletcher, Alicene Alcindor, Fiona Howe, Comfort Ndive

Registered Charity No. 1046631 Company No. 2840865

www.sicklecellsociety.org The Sickle Cell Society, July 2012, 9th Edition, NR Next planned review date July 2013