Sickle Cell Society July Newsletter

The voice of theSickle Cell CommunitySickle cell disease affects millions throughout the world; making it one ofthe world’s most commonly inherited blood disorders.

Issue 9 | Summer 2012

An Evening with

Dame Sally Davies

Patient & Carer Education Seminar

Sickle Cell and I

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ContentsSummer 2012 Chairperson’s Message 03

An Evening with Dame Sally Davies 04

The First Patient and Carer Seminar on Adequacy 05and Safety of Blood Supply

Comprehensive care for people living 06with sickle cell disease in England

Children’s Holiday 08

Drawing Competition

Not one, not two but three – a global collaboration to 09reduce the burden of Sickle Cell Disease

• 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

The Journey So Far 12

A Reflection on the Development of a new Psychology 13Service in Leicestershire and Northamptonshire:A Local Achievement

• 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 21

Metropolitan Police Crime Museum Donates £1,247.90 23

Completed Charity Skydive 24

Up for a challenge? 25

An Evening with Sally Davies

It Pays to Volunteer

A Tale of Two Marathons

Sickle Cell Society | News Review02 | Contents



Chair’s message | 03News Review | 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

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).

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.

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

Anne Welsh BA, MSc Chairperson, Sickle Cell Society

Message from theChairperson

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 WelshCHAIRPERSON, SICKLE CELL SOCIETY

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SICKLE_CELL_SOCIETY Newsletter JULY 2012_Pages_12/11 11/07/2012 12:04 Page 1


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L-R The Director of the NHS Sickle Cell andThalassaemia Screening Programme,

Dr Allison Streetly, Dame Sally Davies andAlexander Adesope The Sickle Cell Society Volunteer.

Service user Yemisi Adebayo

Sickle Cell Society | News Review04 | News and Events

Professor Dame Sally Davies CMO

An Evening with Dame Sally Davies

Dr Philip Nortey & Iyamide Thomas

Dame Sally Davis with Sickle Cell Staff, Trustees, Volunteers and Supporters

Guest listening attentively to Dame Sally Davies Dame Sally Davies and Dr. Kofi Anie The Sickle Cell

Society’s Scientific Adviser

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.

Service user Stella Ochi




News and Events | 05News Review | Sickle Cell Society

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.

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

Sickle Cell Patient Annie MacDonald voicing herconcerns 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 speakerDr Lorna Williamson and Theo Clarke from NHSBT

discussing matters on blood donation

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 Subramaniamsinging “Greater Thing Are Yet To come” Dignitaries participating in the service

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.




Sickle Cell Society | News Review06 | The Society projects

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

THE NATIONWIDE COMPREHENSIVE CARE PROJECTIn effect, the background in 2009 necessitated a focus on influencing the nascent commissioningagenda and arguing the case that:

1) Contemporary healthcare commissioning should engage the equally contemporary thinking thatsickle cell disease care provision needed a coordinated / joined-up approach, addressing all thecomprehensive multi-disciplinary challenges posed by sickle cell to the health service user andprovider alike.

2) The service users and indeed service user groups (such as the Sickle Cell Society and its regionallinks) 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 ofsucceeding. We had to advocate for the wider determinants of health as evidenced by thepotentials of our independently audited work and as advocated no-less by the NICE (Bulletin ofFebruary 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 recorda very productive collaborative response to the drivers of change indentified in the News Review ofSpring 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 gaugeimpending NHS developments.

A robust performance gauge now exists to ascertain the user responsiveness ofcommissioned 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 andPortsmouth.

Information provision to update on various NHS developments, especially w.r.t. commissioningarrangements; surrogate advocacy helping to articulate concerns; orchestrating service users anduser groups responses to various policy consultations from the DH.

The staff and governance of the Sickle Cell Society: accessible counsel of reference to the SickleCell Society staff and governance.

Dr Asa’ah Nkohkwo FRSPHNationwide Adviser, Comprehensive Care

Comprehensive care for people livingwith sickle cell disease in England:Department of Health support for a meaningfulpartnership for the future - A Project Impact Reflective

By Dr Asa’ah NKOHKWO FRSPHNationwide Adviser, Comprehensive Care

Under Section 64 of the UK NHS & Public HealthAct 1968, the Sickle Cell Society entered intoformal collaboration with the Department ofHealth’s 3rd Sector Innovation, Excellence &Service Development Programme in 2009. Theobjective was to explore a Best Practice modelof comprehensive care, through a benchmarkof collaborations and partnerships. Under thismandated arrangement, and during the lastcouple of years, Dr Nkohkwo, previously chiefexecutive of the Society, has travelled acrossEngland to engage NHS service users andproviders, responsive commissioners and otherstakeholders. He has instigated and/ orsupported collaborations in the review ofservices for improving health in people withsickle cell disease. In this article, he invites usto reflect on the outputs and outcomes, i.e. anImpact Assessment of the project, (2009-2012),which was aimed in essence towardsmarketing the Society’s RCA pilot model ofcomprehensive care, which could also haveexemplary implications for the wider chronicdisease care.

BACKGROUND: The Wider Determinants ofHealth

An estimated 14,500 people live with the “full-blown” sickle cell disease, while another240,000 are silent carriers in the UK. Thechallenges posed by the disease could besummed up by two landmark documents- aDepartment of Health (DH) sponsored review (2009) which highlighted medical needs, andthe findings of the Sickle Cell Society’s flagshipRegional Support Care Derbyshire Project,2004-2008, which later highlighted largely non-medical yet vital and complementarysupport needs (ref SCS HIA Report 2007,www.sicklecellsociety.org & News Review Spring2010):

Medical challenges:- Rapid access to treatment, preferably by-passing the general practitioners (GPs) &Accident & Emergency (A&E)- Patients engagement & experience-baseddesign of care pathways- Free Prescriptions & Equity in access to newtreatment technologies- Addressing Research towards a cure

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The Society projects | 07News Review | Sickle Cell Society

Service users have been better informedand more engaged with NHS developmentsacross the country and hence more empowered to participate in thecontemporary ethos of co-design of theirvery own healthcare.

The status of the Society with itsstakeholders has been enhancedsignificantly.

UK FORUM ON HAEMOGLOBIN DISORDERS:Increased service users’ involvement with UKForum steering committee and conferencesand peer review inspection visits to treatmentcentres.

Improved collaboration has been fosteredwith the user side of the NHS divide.Service improvement reviews should bemore user-responsive.

DH CLINICAL SERVICES DEVELOPMENT GROUPInvolvement in development of key clinicalservices including: specialist service definitionsets, TCD ultrasound, NHR register, revision ofpaediatric treatment standards.

Surrogate advocacy has enabled a serviceuser’s input into the development of keyclinical services.

ALL-PARTY PARLIAMENTARY GROUP FORSICKLE CELL & THALASSAEMIAProvided evidence gathered from nationwideitinerary, including such issues as FreePrescription, while also relaying feedback fromParliament.

Sickle Cell patients now influenceParliamentary scrutiny of health & socialcare policies more than ever before.

NHS COMMISSIONERS: membership of theDH-EMSCG Project Expert Working Party & theSpecialised Services PPE Steering Group of theNHS Commissioning Board Authority.

DH Commissioning Framework for theHaemoglobinopathies launched March 2012;How commissioning will be measured:Supported the definitions of commissioningoutcomes and measures;Produced commissioning strategy paper on amodel “Community Hub” functionality

Through a user’s engagement workshopand representations, influenced theCommissioning Framework to include afocus on non-acute care provisions. The“Community Hub” model has been well-received as a way forward for servicedefinition. The DH Minister for Quality hasreferred the model to commissionersacross the NHS in England.

SPECIALISED HEALTHCARE ALLIANCE: Membership supported the development andpresentation of 5 position statements inresponse to key government policy intentionsw.r.t. specialised health conditions.

Another strategic alliance that hasenabled Sickle Cell patients to influenceParliamentary scrutiny of health & socialcare policy more than ever before.

GPs & PRIMARY CARE:Through NIHR-CLAHRC for the NWL, supporteda model GP sickle-cell awareness interventionproject with PRINCE2 project managementassurance.

Increased awareness of sickle-cell issuesin NWL primary care should improvepatients’ confidence in GP and reduceprimary care by-pass.

NHS ADVISORY PANELS: NICE, SaBTO, UKPHRSupported the production of NICE Guidelineson managing acute painful sickle episode inhospital; supported the assessment of NIHRgrant applications on engagement potentialof various stakeholders; supported the DH-SaBTO blood donor review in 2011;supported the assessment of over a dozencandidate specialist portfolios for the UK PublicHealth Register.

Surrogate advocacy has enabled a serviceusers input into the development andreview of key clinical services andguidance.Also, UKPHR work has afforded an inputinto NHS workforce development.

DISSEMINATION of LEARNING: workedespecially with the NIHR-CLAHRC for NWL @Imperial College; the Sickle Cell SocietyEditorial Team; reported periodically to the DH:

15 publications including international peer-reviewed outlets; 4 formal reports to the DH;21 formal presentations; numerous meetings-nationwide and internationally;

Moderated/ chaired 3 milestone patient &carers education seminars in the UK & 2international conferences on sickle-cell healthimprovement.

The comprehensive care project hasserved as a productive platform to testand optimise a concept of care. Lessonsfrom the project are now available toenable the provision of and continuousimprovement in comprehensive care forpeople living with sickle-cell disease in theUK and beyond.

CONCLUSIONS, LESSONS & RECOMMENDATIONS

The momentum in the sickle-cell disease sectorremains towards a meaningful comprehensivecare model, in effect “a Managed Networkaddressing a commissioning framework forthe seamless provision of specialist care,local hospital care & community care”. Itshould be pointed out that, as a result ofremit and the emerging commissioningclimate, (especially following change ofgovernment in England in 2010), the outputsso far have largely been in favour of acutesector developments. Yet, as articulatedthrough the surrogate advocacy of theComprehensive Care project, there isstrong evidence from the patients andpatients groups, that a truly user-responsivenetwork of care should best be designed toinclude the concept of a commissionablecomprehensive community hubfunctionality (Fig-1), addressing also the

wider determinants of health. It is thereforeencouraging that the Minister for Qualityand specialist commissioners have allshown interest, recently, in the hub.

On a note of lessons, thanks to the multi-facetted role of the Comprehensive CareProject, it has been exemplified that withsuitable resourcing, service users candirectly or through surrogate advocacycontribute to shaping the future of their veryown care arrangements. It has also beenexemplified that service providers will workwith suitably coordinated responses fromthe service users side to enable theestablishment of quality and potentiallymore productive care for all affected bysickle cell disease.

It is hoped that the gains from the last 3 yearswill continue to inform the on-going NHSreforms, including the nascent ClinicalReference Group (of the new NHSCommissioning Board Authority) on theapplication of the new DH CommissioningFramework for Sickle Cell & Thalassaemia. We would appreciate continued feedbackfrom the readership and the widerhaemoglobinopathies sector on the perceivedshort, medium and longer term impact of theComprehensive Care campaign. Finally, weacknowledge with immense thanks the supportof the DH, the UK Forum and other NHSstakeholders, the patients and their carers andthe Sickle Cell Society for this improvementwork.

Community Hub SINGLE POINT OF

ACCESS CO-ORDINATION OF

SERVICES: INTEGRATION &

SOCIAL SERVICES HOUSING BENEFITS CHILD CARE

GP COMMISSIONING CONSORTIA

NHS HAEMOGLOBINOPATHY AND RELATED SERVICES

TRANSPORT COMPLEMENTARY THERAPIES

HOME CARE SUPPORT

CARER’S SUPPORT

MENTAL WELL-BEING SERVICES

DRY HYDROTHERAPY

WHOLE SYSTEM SELF MANAGEMENT PROGRAMMES

CLIENT A REFLEXOLOGY BENEFITS

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

CLIENT B SELF MANAGEMENT PROGRAMME HOME CARE CARER’S SUPPORT

EMPLOYMENT & EDUCATION

CLIENT C DRY HYDROTHERAPY MENTAL WELL BEING SOCIAL SERVICES

CLIENT D TRANSPORT HOUSING

CLIENT E CHILD CARE SUPPORTING

PARENTS PROGRAMME

CONTINUITY



Cont’d from previous page...




Tiarnah Bird – Age 8

08 | The Society projects

Each year the Sickle Cell Society holds a children’s holiday. Myles Angel was very pleasedafter attending the children’s holiday and wrote this wonderful thank you letter to ComfortNdive the Society’s Regional Care Advisor.

Children’s Holiday

In the last issue of our newsletter we ran a children’s drawing competition so the winning picturescould contribute to the new edition of the NHS Sickle Cell and Thalassaemia ScreeningProgramme’s parent /carers guide due out this autumn. We have now chosen four winningdrawings for the guide, but guess what? In this competition everyone is a winner and has won aprize just for taking part! Thanks to all the young people that sent in drawings; prizes will beawarded shortly. We received some fantastic drawings and the four winning drawings arereproduced 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'sMarvellous Children's Charity and the band JLS for donation of prizes.

Pictures that will appear in the NHS Parents / Carers Guide

Everyone’s a Winner - results of Children’s Drawing Competition

Chidera Eggerue - 17

Gracedo Lelo – Age 11

Dahlia Jusu – Age 13

Sickle Cell Society | News Review




News Review | Sickle Cell Society The Society projects | 09

Recently, I was privileged to attend a unique collaboration of three internationalconferences where leading experts fromaround the globe came together to present,discuss and examine strategies, experiencesand techniques all focused on promoting andimproving the health of people with blooddisorders, in particular Sickle Cell Disease andThalassaemia. From 12 – 16 March 2012, at

the Westin Atlanta Perimeter North Hotel inAtlanta, USA played host to the 2nd NationalConference on Blood Disorders in Public Health(12-14 March), the Conference of the GlobalSickle Cell Disease Network (14 -15 March) andthe 2nd Meeting of the Worldwide Initiative onSocial Studies on Haemoglobinopathies –WISSH – (16 March).

Over 300 people attended and although themajority were based in the US, participants alsocame 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 andcommunication specialists, researchers, policymakers, representatives from voluntary andadvocacy organizations, private sector leadersand a few service users. Well known attendeesfrom the UK included Dr Kofi Anie, Dr MojiAwogbade, Professor Simon Dyson and Dr Baba Inusa. There were a wide varietyof poster and oral presentations underconference themes that included ‘partnership& collaboration’, ‘prevention’, ‘policy andlegislation’, ‘communication, media &technology’, ‘ disparity’, ‘public health systemimprovement’, ‘partners’, ‘research’, ‘stigma’,and ‘carriers’.

I presented a poster entitled ‘The Family Legacy– an innovative approach to raising awarenessof sickle cell disease and testing’. Thisshowcased the outreach work I do on behalf ofthe National Health Service (NHS) Sickle Cell andThalassaemia Screening Programme, using theFamily Legacy DVD drama (which many of youhave seen) to raise awareness of sickle celldisease, testing and associated myths. At theWISSH conference I did an oral presentation inthe ‘Partners’ session called ‘The Family Legacy– a UK drama on Sickle Cell and relationships infour generations of a British Nigerian Family’.Both presentations generated a lot of interestand contacts.

The organizers and sponsors of these threeconferences should be applauded for puttingon such a successful, informative event. For meit really brought home the fact that West Africabears the brunt of the sickle cell disease burden.However, to have witnessed such an expertgathering of minds and heard about the

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

with sickle cell disease (and other blooddisorders) made me leave Atlanta with a senseof some hope.

Useful websites

www.blooddisordersconferences.com

www.familylegacy.org.uk

www.sct.screening.nhs.uk

Not one, not two but three – a globalcollaboration to reduce the burden of Sickle Cell Disease By Iyamide Thomas - Sickle Cell Society Regional Care Advisor, South London

Iyamide takes a question about her poster

L-R: Charlotte Owusu, Dr Allan Platt, Emory

University, Atlanta and Iyamide Thomas

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

Front Row L-R: Charlotte Owusu,Iyamide Thomas,

Back Row L-R: Dr Baba Inusa,

Dr Saranya Singaravel




Sickle Cell Society | News Review10 | The Society News

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)

Date: Saturday July 14, 2012Time: (10am – 5pm)

Venue: Emmanuel Centre Marsham Street

Westminster London, SW1P 3DW

____________________

The Second Patientand Carer Seminar

on Adequacyand Safety ofBlood Supply

To be held in October 2012For more information contact

Carlotta [email protected]

T: 020 8961 7795

It Pays To VolunteerOn 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.

L-R Mayor Councillor Belinda Donovan Hammersmith & Fulham, Mr Alan King and Councillor

Marcus Ginn, Cabinet Member for Community Care Hammersmith and Fulham.

Carlotta Olason and Comfort Ndive




Service User News | 11News Review | Sickle Cell Society

SERVICE USER NEWS

My bodySickle Cell and I My ribs ache

My sides cramp

My wrist pinch

My heart sinks

My back roars with me as I

yell in pain.

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

My pain is short term My future is long term My gift of life is what I cherishThe love from my family is whatkeeps me going.

By Flonah Bangalie

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 interview 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 il lness and

had to leave the company.

Sickle cell loves to come everywhere 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 now know that sickle cell has no power

over me. Yes, it can come and go as it

pleases, yes, when it does come it can

cause total chaos and yes, it will always

sneak its way into my suitcase & have the

nerve 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.

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 very 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 very least better

prepare.

As a result of taking back control, I 've

since had an amazing holiday abroad

and I'm looking forward 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




Sickle Cell Society | News Review12 | Support Group News

SUPPORT GROUP NEWS

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: [email protected]

Charity Registration No: 1118508

SICKLE CELL/ THALASSAEMIA SUPPORT GROUP OF BARKING, DAGENHAM AND HAVERING




Support Group News | 13News Review | Sickle Cell Society

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

SUPPORT GROUP NEWS

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 HerdmanClinical Psychologist




Sickle Cell Society | News Review14 | Service Provider News

The last few months have seen the launch of

new publications from the NHS Sickle Cell and

Thalassaemia Screening Programme. Tests forDads, 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 Professionalsleaflet. 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

SERVICE PROVIDER NEWS

NHS Sickle Cell and ThalassaemiaScreening Programme NewsNew publications from the Screening Programme

Dayglo Project wins awardDayglo, 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 CommissioningIn 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






Service Provider News | 15News Review | Sickle Cell Society

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 projectIn 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 thalassaemiaThe 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.”





Sickle Cell Society | News Review16 | 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 2012The 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.





Service Provider News | 17News Review | Sickle Cell Society


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: [email protected] 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’SREVISITED - 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.

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.”

Baroness Floella Benjamin




York University leads two new importantand 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 sicklecell 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 ante-

natal 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 thalassaemiatrait’, is funded by the Economic and Social Sciences ResearchCouncil ESRCThis 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.

Sickle Cell Society | News Review18 | Research

Home Monitoring of Oxygen Levels for Sickle Cell

RESEARCH

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.





Research | 19News Review | Sickle Cell Society

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




Sickle Cell Society | News Review20 | Research




Fundraising | 21News Review | Sickle Cell Society

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.

A Tale of Two MarathonsFUNDRAISING

Justin Haynes




Sickle Cell Society | News Review22 | Fundraising

FUNDRAISING

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 memory of my late son

Lukuman who died on 1st May 2006.

Lukuman had sickle cell anaemia.

However, despite his il lness 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.

Also in memory of you dad, the 'Man For All

Seasons', who taught me to cycle.

Lukuman Babatunde

Mrs Patricia Onyearu

London to Paris Cycle Ride In Memory of My Dear Son Lukuman’s 5th Year Anniversary

FUNDRAISING

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





FUNDRAISING

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!

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 NewScotland Yard with Kalpna Patel the Sickle Cell SocietyFundraising Manager.

Metropolitan Police Crime MuseumDonates £1,247.90

Giveonthemobile®




Sickle Cell Society | News Review24 | Fundraising

FUNDRAISING

Completed Charity Skydive even withsevere 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.

Please donate towards our AnnualChildren’s Holiday Fund

The Sickle Cell Society provides 30 Children on a one week, free, fun packed holidayaccompanied by 15 dedicated Carers. The children’s holiday approximately costs £15,000each year and The Sickle Cell Society urgently needs your help to raise this amount for theAugust 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 PatelFundraising Manager

Toye Akinwale





FUNDRAISING

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.

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 [email protected] for further information and a

registration pack.




Sickle Cell Society | News Review26 | Society news and events

The Sickle Cell Society governance team

PRESIDENT & PATRONS

President:

Mr Michael Parker CBE, FCCA

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

Operational Manager:

Patrick Ojeer

BOARD OF TRUSTEES

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

MEDICAL ADVISORS

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

SCIENTIFIC ADVISORS

Dr Mary Petrou

Professor Simon Dyson

Dr Kofi Anie

Information Quality StatementThe Sickle Cell Society adheres to appropriate

standards in the production and

dissemination of information:

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.

The above said, information of a medical

nature from us is always screened through our

traditional grading system (p9, Standards for

the Clinical Care of Adults with Sickle Cell

Disease in the UK, Sickle Cell Society, July 2008):

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;

Grade B: statement is backed by well-

conducted 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.

Finally, we would advise patients to always

refer to their medical doctor on matters in

relation to their Healthcare.




News Review | Sickle Cell Society Sponsors and Donations | 27

DonationsDonation £200 and Over From 26 November 2011 - 15 June 2012

Payroll Giving......................................................................................................£8,773.50ISON 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

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

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 notewe have only mentioned donations of £200 and over as space would not permit usto mention every donation.

The Sickle Cell Society is grateful to the followingsponsors

Novartis Pharmaceuticals UK Ltd

Department of Health

London Councils

Roald Dahl’s Marvellous Children’s Charity

TerumoBCT



SCS News Review

We would like to know your news and viewsfor the next edition, also your comments onthis publication.

Please send your comments [email protected]

Sickle Cell Society

54 Station Road, London NW10 4UAT: 020 8961 7795/4006 F: 020 8961 8346Registered Charity No. 1046631 Company No. 2840865

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

www.sicklecellsociety.org

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 withsickle cell disease. It was first set up in 1979 by a group of patients, parents andhealth professionals who were all concerned about the lack of understanding andinadequacy of treatment for people with sickle cell disease.

• The Society’s mission is to enable and assist individuals with sickle cell disease realisetheir full economic and social potential. This is achieved by improving opportunitiesfor sickle cell affected individuals and families by raising public awareness througheducation 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 theright to quality care. This can be achieved if funding is made available to educatehealth carers and other professionals about the condition. The Society aims to lobbyfor 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 conditionsuch as sickle haemoglobin C disease and sickle beta thalassaemia.

• The conditions affect the normal oxygen carrying capacity of red blood cells. The symptoms can include severe anaemia, intense pain, damage to major organsand infections. Although there is no routine cure for sickle cell, patients can besupported to manage their pain, and regular monitoring can help to avoid lifethreatening complications such as stroke.

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

The Sickle Cell Society, July 2012, 9th Edition, NRNext planned review date July 2013



Documents

Sickle Cell Society July Newsletter