Sickle Cell Society

Children’s Holiday

Brent Council Project

Ade Adebisi

Patient Education Seminar

Floella Benjamin receivesAction for Children’s arts award

Let the story be told: “sickle cell disease a Sierra Leonean Discovery”

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 10 | Winter 2012

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Cover_12/11 08/01/2013 09:57 Page 2

ContentsWinter 2012 Chairman Message 3

Chief Executive Message 4

•Society News

AGM 5

Patient Education Seminar 6

Children Holiday 7/8

Brent Sickle Cell Project 9

Caring for Carers 10

Out and about during Black History Month 2012 11/12

•Service Users News

Ade Adebisi 12/13

Hannnah Kupoluyi

•Support Group News

Wandsworth's Sickle Cell and Thalassaemia Support Group 14

Barking & Dagenham and Havering Sickle Cell and 14Thalassaemia Support Group

•Service Providers News

NHS SCT Screening Programme 15

Working with NHS Blood and Transplant Service (NHSBT) 16

•Research and Development

Let the story be told: “sickle cell disease a Sierra Leonean Discovery” 17

Sickle Cell Condition Advocates Ghana 18/19

Life Span Self-Management Programmes for people with 20Sickle Cell and Thalassaemia: a health and inequalitieschallenge in the new NHS

Comprehensive Care in Sickle Cell Disease 21

Looking after your teeth 22

A Brand New Garden 22

•Fundraising

British 10K London Run 2012 23

Bethany-COGIC Sickle Cell Society Fundraising Gala Dinner 23

Hastings Half Marathon 24

Sky Dive 24

Rotary Club of Hendon 24

Royal Bank of Scotland – Focused Women’s Network Supports 24/25the Sickle Cell Society

Just giving 25

Sickle Cell Society Governance team 26

Information Quality Statement 26

Donations 27

Comfort with the Children at Roald Dahl'sMuseum with Rasta Mouse Author

Michael Desoya

MP Andrew Gwynne with the speaker at thePatient Educations Seminar

The children excited about their participationin the Education Seminar

Sickle Cell Society | News Review02 | Contents


Chair’s message | 03News Review | Sickle Cell Society

I am delighted and thankful to all the trustees of the Sickle Cell Society (SCS)who have elected me as the new chairperson. The end of 2012 is fastapproaching, and it is an opportune time to renew contacts, celebrate successand make plans for the future. The Sickle Cell Society is highly committed toachieving a healthier, happier and fairer society and to place our organisationat the leading edge of both local and global public health.

Our annual children’s holiday at Woodroad High House in August saw devotedvolunteers and carers in action, looking after our children who were engagedin team building activities such as cooking, painting and handcraft.

I would like to acknowledge and thank all of our various stakeholders, funders,volunteers and staff for their contribution to help us raise awareness of sicklecell disease and influence polices at the very highest level.

As chairperson I want us to be confident, flexible and an imaginativeorganisation. I do urge all to contribute to our thinking and embrace ourcommitments to our stakeholders such as:

• Campaigning for the provision of health services best suited to serviceusers comparable to the best available worldwide.

• Promotion of healthy living and managing of genetic blood disorders,reduce health inequality and support the social and economicchallenges faced by people affected by these disorders.

Let us continue to have a great leap forward to achieve more than we everhave before.

Finally, I am pleased to announce that we have appointed a new ChiefExecutive Mr John James who will provide the management and leadershipthat will move us forward into 2013/14 and beyond. Best wishes for the festiveseason and the New Year.

Mr Narcisse Kamga CHAIRPERSON, SICKLE CELL SOCIETY

Mr Narcisse Kamga Chairperson, Sickle Cell Society

Message from the New Chairperson

Follow SickleCellUK on Twitter

Add Sickle Cell Society UKto your Facebook

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:14 Page 1

Sickle Cell Society | News Review04 | News and Events

John James, CEO

Message from the New CEO

At the outset, let me say how pleased I am to have been appointed ChiefExecutive of the Sickle Cell Society. It is a privilege for me to lead anorganisation, which seeks to do the very best for patients with sickle cell acrossthe country.

I believe the Society can continue to make a positive contribution. You thereforehave my personal commitment to do all I can to improve sickle cell services,influence policies that may affect patients and strengthen the organisation.

We are currently in challenging times. These will remain for the Society over thenext few years, particularly the uncertain economic climate and the associatedimpact on patients and carers as well as the reduced opportunities to attractadequate funding for the third sector.

The world around us is also changing with globalisation and changes indemography. For example, 1 in every 500 white British new born in Englandcarries a relevant gene (sickle, thalassaemia, haemoglobins C, D, E). It is vitallyimportant therefore that the Society changes, develops and adapts in order tomeet both the economic challenges and the changing demography but alsoto ensure we are a strong, financially sustainable organisation that remains trueto its founding ambitions.

To do this well we must not lose sight that we are here for sickle cell patients.Therefore, we must find more opportunities for funding, even in this climate ofeconomic uncertainty, foster a culture of successful delivery on our contractsand grants and strengthen our relationship with stakeholders across the country.This will allow us to provide better support and advice to sickle cell patients andtheir families on a sustainable basis.

Ultimately, we must set our sights high for the Society; I genuinely believe that ifwe work together providing high quality leadership both staff and trustees cancreate a strategic framework to improve our sustainability working withstakeholders and therefore, strengthen the Sickle Cell Society as it enters 2013.

Finally, can I extend my good wishes for the festive season and the New Year.

John James CEO, SICKLE CELL SOCIETY


News and Events | 05News Review | Sickle Cell Society

The Sickle Cell Society held its 33rd Annual General Meeting on Saturday 14th July at the Emmanuel Centre, Marsham Street, Westminster, London attended

by over 130 service users, carers, staff , trustees and many others. The Society launched the new website. It was also a day of celebration and various

awards were presented.

SICKLE CELL SOCIETY’S NEWS

Novartis Scholarship winners Ms Rahimot Gbadamosi andMr Cedric Kumi as well as Mr Richard A Guobadia

Black on Black award winner

The president of the Sickle Cell Society Mr Michael Parker and Flonah Bangalie

Mr Michael Parker presenting award to The Ealing,Hammersmith & Fulham Sickle Cell and Thalassaemia

Support Group for their outstanding work

Office manager Miriam Williams smiling as she receives the staff ofthe year award, presented by then Chair Anne Welsh

Celebrating with Elizabeth on her birthday Anne Welshand Narcisse Kamga at the AGM

Anne Welsh acknowledging Dr. Lola Oni for her support to the Sickle Cell Society

Outstanding Personality Award winner Dr Shubha Allard MD FRCP FRCPath

Consultant Haematologist Barts Health NHS Trust and NHS Blood & Transplant

Floella Benjamin Award winner Miss Melrose Browne with Mr Michael Parker The president of the Sickle Cell Society




Sickle Cell Society | News Review06 | The Society projects

Cont’d next page...

Over 130 Patients and Carers attended the seminar addressing psychosocial issuesaffecting individuals with SCD and their families. Psychosocial issues and sickle cellpatients in the UK is an area that is not well examined. With the new changes emergingwithin the health care system in the UK; this is the appropriate time for this issue to be addressed.

Some of the most important psychosocial element associated with the onset of sicklecell disease are factors such as coping with pain, work, family and social life. Many ofthese factors were covered during the education seminar. Both patients and carers wereable to participate.

Patient & Carer Education SeminarAddressing psychosocial aspects of sickle cell disorder

Following on from our series of Patient and Carer seminars, the 2nd Patient and Carerseminar on adequacy and safety of Blood supply held on Saturday 27th October 2012,in Manchester. The participants were supportive. The seminar was successful with over132 carers and patients attending. The Lord Mayor Councillor Elaine Boyes of Manchestergave a moving opening speech. Anne Welsh Vice Chair of The Sickle Cell Society sharedthe society’s views on Blood Safety.

Keeping in line with the Black History Month, Ms Iyamdie Thomas Sickle Cell Society’sRegional Care Adviser , led us through the black history timeline on blood. Her presentation was followed by Dr Rob Hollingsworth's talk on the NationalHaemoglobinopathy Register (NHR)

A general overview on Blood Quality and Safety from a political perspective was presented by Andrew Gwynne MP for Denton & Reddish. He was questionedintensively by carers and patients who had pressing questions; which he dealt with well. Overall seminar was a success given the extraordinary feedback received from the participants.

The 2nd Patient and Carer seminar on adequacyand safety of Blood supply

Chair of the Patient Education Day Dr. Norman Parkerthe Sickle Cell Society Medical Adviser, speaking

to the audience

The Panel

Sia Nyandemo Chief Executive of SCCAN addressing the Panel Rachel Mcfee Oscar Sandwell Centre Manager and Khudeja Khanom

Oscar Sandwell Community Development officerspeaking on Social support


The Society projects | 07News Review | Sickle Cell Society


Comfort Ndive Regional Care Advisor- London North

This year recorded a significant increase in the number of families wanting to sendtheir children to the Society’s Children Holiday. We had 33 Children. The ChildrenHoliday started from the 4th – 11th August 2012, this proved to be yet anotherfantastic week’s break away from home. With other children living with sickle celldisorder from other parts of the country; to be together, make new friends, enjoyeach other’s company; thus enabling their parents/carers to have some time forthemselves and a break away from caring.

It was great having our regular but also dedicated volunteers and also some newyoung ones who gave us their time during this period to support the Society withits children activities. We were privileged to have among us Dr Nellie Adjaye, oneof our Medical Advisors who spent a few days to support us and had direct experience on what we do during the children’s holiday.

She was able to meet with the children, carers and nurses. The screening process for children’s holiday was carried out by ComfortNdvie, Comfort Okolo and Hilda Castillo–Binger (both retired Specialist nurse Counsellors)

CHILDREN’S HOLIDAY AUGUST 2012

Dr Lorna Williamson, Medical and Rearch Director,NHS Blood and Transplant

Speaking to the audience on the Current TransfusionParactice and Safety.

Participants from Italy LR Dr. Lucia De Zen,Dr. Epifania Testa Transfusionist and

Dr. Federico Minen Pediatrician

Participants evidently absorbed by the presentations

LR. MP Andrew Gwynne, Mr Isiak Idowm (Chair) Liverpool support group, Mrs Anne Welsh, Verna Davis (Service Manager Manchester Sickle Cell & Thalassaemia Centre) Lord Mayor Elane Boyes and her assistant, Dr Lorna Williamson from NHSBT and

Dr. Lucia De Zen, on the back row Mr Kamga Narcisse Kamga Chair of The Sickle Cell Society and Carlotta Olason

One of the children entertaining the audience Anne Welsh, Dr. Rob Hollingsworth, Andrew Gwynne MP,Dr. Lorna M. Williamson, Mrs Verna Davis,Ms Iyamide Thomas,

Dr Andrew Will, Dr Kate Ryan,Carlotta Olason & Narcisse Kamga,

The children excited about their participation in the Education Seminar

The Arts and Crafts activity was great fun, the children were ableshow-case on display their creativeness. The Tie-dye T-Shirts were

beautifully designed and all were displayed and prices given to thebest ones. There was also glass-painting with breath-taking designs

and some magnificent key rings


08 | The Society projects

Young People's Group 11-16 yr olds at Woodrow High House

The Young Peoples’ Forum was revived with the help of a new young volunteer team;Solomon and Jayson, who also suffers with sickle cell as lead; it was very kind of him tostep in and have a session with the 11th – 16 years old. They all loved it, Jayson wasable to talk about his experience, and he was a role model for them. It was super tohave him with us, particularly with the boys, who had an honest educational sessionwith Jayson and Errol who touched on issues such as priapism, changes from a youngman to manhood; changes that will happen to their bodies as they grow to becomeadults(Transition period), very significant for them to know. Then there was the Girlssessions too where we had the 11 – 16years old; the transition period from young girlsto ladies; talked about relationships and all girl-talk, including beauty and make-ups

The visits to Chessington and Roald Dahl wereenjoyable and great fun, all the children had a hilarious time at the Roald Dahl Museum. The younger ones had hilarious fun at the Roald Dahl; this was at the StoryTelling Room with Michael De Souza whose book (Rastamouse) is on the Children TVprogramme; “this is fabulous “commented oneof the children.

Children’s Holiday continued...

Sickle Cell Society | News Review

Sia Nyandemo Chief Executive of SCCAN addressing the Panel

Enjoying outdoor Play The children working together as a team The children enjoying outdoor activities

Rasta Mouse Author Michael Desoya talking toAderemkokm Haji-Awes about his book.

Comfort with the Children at Roald Dahl's Museumwith Rasta Mouse Author Michael Desoya

The children at chestington theame parkSoloman one of our volunteers with the children

At Roald Dahl's Museum with Rasta Mouse Author Michael Desoya

Cont’d from previous page...


News Review | Sickle Cell Society The Society projects | 09

The Brent project overall aim is to develop direct services that will improve the quality of life for individuals living with sickle cell disease and their carers/parents

living in the Borough of Brent. The Project Worker will represent the Sickle Cell Society and provide support to individuals and their families affected by SCD.

By working with people affected with SCD, support groups and volunteers, and by establishing links with service providers, the Project Worker will raise awareness

of the physical, psychological and social problems caused by SCD. The project will seek to promote, secure and deliver appropriate standards of care for

individuals and their families (carers/parents) affected by SCD.

Outcomes

The project hopes to achieve the following outcomes

Improve patients’ Mental health and Wellbeing by:

• Educating and empowering patients to take control over their own health and wellbeing

• Encourage patients to live more independently

• Reduce social isolation, poverty and health inequalities

• Patients and carers/parents will be better informed so they can manage the condition appropriately

• Reduce the number of hospital visits for beneficiaries

• Improve school attendance and educational attainments of young people with SCD

• Encourage patients and parents/carers to be more involved, to participate more in their local communities

• Improve employment opportunities through better management of the condition.

VOLUNTEERS - IF YOU WOULD LIKE TO GIVE BACK AND MAKE A DIFFERENCE

The Project recruits volunteers from the local community who are assisted and trained to provide support to individuals and parents/carers living with

sickle cell disorder.

WE NEED VOLUNTEERS WHO CAN HELP – IF YOU CAN OFFER EVEN HALF AN HOUR A WEEK WE WOULD LOVE TO HEAR FROM YOU.

We will provide you with training, expenses and references.

Our Client Support Services include:

• Befriending

• Hospital Visiting

• Home Visiting

• Mentoring

IF YOU NEED SUPPORT OR YOU WISH TO VOLUNTEER

Contact: Comfort Ndive, Project Worker

Telephone: 020 8961 7795

Email: [email protected]

THE BRENT SICKLE CELL PROJECTAre You Affected By SICKLE CELL DISORDER?

Do You Live in the Borough of Brent?

Kindly funded through a

restricted grant by

Brent Council


Sickle Cell Society | News Review10 | The Society News

I hope my attempt at a catchy title is not lost upon readers; trust

me it will become apparent as you read on! Some readers might

recall our ‘Reaching out to Carers’ project which ran from 1

January to 31 March 2011 funded by the Department of Health

which enabled the Sickle Cell Society to provide a structured

support package for people caring for individuals with sickle cell

disorder. This package included information, advocacy, advice,

training, respite and pampering. The Society has always

recognised the value of those individuals who care for people

with sickle cell disorder (i.e. ‘carers’) and has continually sought

funding to provide a service that would help improve their health

and well-being. This should in turn enable them to provide care

effectively and safely for people with sickle cell disorder. This year

we were successful in getting another grant (this time from D'Oyle

Carte Charitable Trust) enabling us to take 23 carers out on a ‘Spa

Day ’ of pampering and relaxation. “Aaaaah”, isn’t it nice we were

able to care for our carers? Where did we go? We went to a spa

- at a ‘boutique hotel ’ near Gatwick (If I give anymore away it

would be free advertising!). Now do you get my catchy title?! In

addition to the 23 carers, myself and colleague Comfort Ndive

also went on the trip making 25 people in all.

The Spa Hotel 'near Gatwick'

Whenever we get a grant for carers, (especially if it is to pamper

them) it is usually small and we can only offer pampering to a

limited number of individuals. Therefore, we prioritised carers who

had not been on our previous pampering sessions and with the

exception of two carers, this turned out to be the case. I was also

happy to be able to offer the spa trip to an older married couple

who care for their daughter with sickle cell, thus ensuring we had

at least one man among the 24 women! Preparations for the trip

had not been easy; the first recommendation was a spa in Surrey

but they did not do big groups, as did another spa in Kent, which

a friend had recommended. However, the spa in Kent

recommended their five star sister hotel near Gatwick as this

could cater for groups of up to 25. Thus solved the initial

headache of the venue! Next was the coordination of treatment

choices from all 25 participants (in advance) so the hotel could

bring in more therapists for the massages, pedicures, manicures

etc. I had negotiated an extension of a discounted deal that

included full use of spa facilities, £135 of treatment choices and

a buffet meal. Organising all this was not without some effort!

Carers relaxing in the Jacuzzi

So it was that on a sunny clear morning of 13th September we left

by coach from our first pick-up point in New Cross (not without

some drama as two late arrivals practically ran after the

departing coach!) and headed for Croydon Sickle Cell and

Thalassaemia Centre (our second pick –up). Thankfully, we arrived

at the hotel only 15 minutes later than scheduled so did not

cause much upset to our scheduled treatment times. What a

fantastic venue we had chosen and not oversold on the internet

either! Lovely polite staff received our party, and I do have to

single out Alice here. The therapists were also all very friendly.

Carers went for their chosen treatments as scheduled or simply

relaxed in the spa facilit ies (hot tubs, Jacuzzi, sauna etc) and

there was even a ‘ relaxation room’. A lovely buffet lunch was

provided in a separate function room and this is where carers

really had time to chat and get to know one other.

Time to relax for lunch

Caring for Carers – Everybody go “Spaaaaaaaah”!

Iyamide Thomas – Regional Care Advisor, South London


The Society News | 11News Review | Sickle Cell Society

All too soon, the day ended and it was time to begin our return

journey home. This journey was not what I had expected; apart

from the lovely surprise of the carers presenting Comfort and I with

thank-you gifts from the shop, conversation between the carers

which began probably during the buffet lunch culminated in

general agreement that they wanted to continue meeting as a

group as there had been such bonding and fruitful exchanges

between them. I then suggested the Society could facilitate this

and thus was born the idea of a Sickle Cell Society ‘Carers Forum’

(subsequently launched at a workshop on 16 October).

The Spa day had indeed been successful in ‘caring for the carers’

as indicated by feedback from some of the women:

Carer 1

“The spa day was just the break I needed to indulge myself,because I deserve it- I have to keep reminding myself of that-and return to the 'world' relaxed, recharged, ready for the world!It was also very special to connect with carers at such a relaxingenvironment. I am certainly going back. Thank you Iyamide andComfort! You are both STARS”!

Carer 2

“It was with much anticipation I looked forward to this spa day.And the venue did not disappoint. I had three treatments in totalbut the day was so much more than pampering. The peersupport was overwhelming and a treatment within itself. Such daysshould be on the NHS as they are vital! I can’t believe I foundsuch fellowship/ friendship with people I had only met that morning”.

Carer 3

“It was great meeting other carers who understand what it is liketo look after a child with sickle cell. Spending so much time inand out of hospital with my child, I was in need of relaxation - theSickle Cell Society came to the rescue! Meeting other inspiringladies and knowing you are not alone was just as relaxing as thetreatments - thank you SCS! I came back rejuvenated, wellinformed and truly inspired”.

Carer 4

“I will thank you for the wonderful care you and Comfort give. Ittakes very special people like you to look after others with suchkindness and concern. I want you to know . . . you areappreciated! Sometimes a family needs that extra special touchthat only people who really care can give. I found that in eachof you who helped. It lifted our burden and lightened our load.It provided a comfortable solution in a tr ying time. I do thankyou so very much for all you have done”.

Carer 5

“What a fantastic day. Thanks again. What a wonderful gathering of inspirational women”!

The Sickle Cell Society will continue to source funding to provide

respite and pampering for carers, as if they are kept well, they

can better care for individuals with sickle cell disorder. As one

carer put it such days are vital and should be on the NHS. When

you think about it, probably an economic saving in the long run!

Out and about during October Black History Month 2012

As the theme of this newsletter issue is ‘Black History’ we thought we would dedicate some space for interesting photographs taken whilst Society staff wereout and about attending events to raise awareness of sickle cell. Here goes!


L-R: Hellen Adom, Outreach Assistant and IyamideThomas at the Windrush Nurses and BeyondFoundation Dinner and Award ceremony

Cynthia Gill, Implementation Manager (Consultant) NHS Sickle Cell & Thalassaemia Screening Programme and

Hellen Adom at Windrush Award ceremony

David Michael, Lewisham's first Black PoliceConstable and founder member of the Black PoliceAssociation holding a Screening Programme Bag


Black History Month 2012 continued...

Sickle Cell Society | News Review12 | Support Group News/Service User News

Ade Adebisi SERVICE USER NEWS

Men at Lewisham Centre displaying the NHS SickleCell and Thalassaemia Screening Programme's 'Test

for Dads' leaflet

Volunteer, Lynne Fletcher gives out goody bags atour Black History Month event in Southwark

Raising awareness at Lewisham Shopping Centre

Professional rugby league is widely acknowledgedas one of the toughest team sports in the world. It’shard on players in peak physical condition but forsomeone with a potentially life-threatening blooddisorder it would appear to be completely out of thequestion.

Try telling that to London Skolars wing Ade Adebisi.The 26-year-old Londoner suffers from sickle celldisease, a genetic blood disorder that can causebouts of chronic pain which often lands the suffererin hospital. Youngsters with the disease were advised to avoid any kind of physical exertion and often theireducation suffered because of absences from school which led to poor career prospects. But Ade has turnedall that thinking on its head by not only playing rugby league at the highest level but also forging a career forhimself outside the game.

His rugby league career has involved Super League clubs Hull FC and London Broncos plus semi-professional outfits Doncaster, Featherstone Rovers and Whitehaven.For the past two years Ade has been back at the London Skolars, the Championship club in north London where it all began for him. A winger with speed andstrength, he’s scored tries wherever he’s been but often at a cost. On one occasion, after a length-of-the-field effort, he just couldn’t get up after scoring andduring a spell with Cumbrian club Whitehaven, Ade collapsed after the first training session. He spent the next seven days in hospital but within 24 hours of comingout played against Gateshead and scored a try.

However, going into the local hospital in Cumbria was a little unnerving because they didn’t know much about sickle cell disease. Luckily, the Head of Haematologyrang Ade’s doctor, Dr Jo Howard, at St Thomas’s Hospital London. Dr Howard is a Consultant Haematologist whose specialist area is sickle cell disease and hasalways encouraged Ade to pursue his sport. As a semi-professional with the Skolars, Ade now holds down a full time job as a support manager with Wilson James,a Specialist Aviation Services, Construction Logistics and Security company.

Ade recently contacted the Sickle Cell Society, a charity that helps people living with the disease. The Society was delighted to find someone with the conditionplaying such a physically demanding sport. Kalpna Patel, Fundraising Manager for the Society, said: “I’m really impressed that Ade is playing such a tough sportat such a high level. It’s very difficult to manage sickle cell disease on a daily basis but to manage a job and also a career in professional rugby is outstanding. Heshould be really proud of himself, and is an excellent role model for others living with sickle cell disease.”

Sickle cell disease is the most common genetic blood disorder in the UK, 240,000 are carrying the gene and roughly 14,500 actually have the condition. InEngland, one in every 1,900 births is a child born with sickle cell disease. One in every 70 births of all babies will carry the relevant gene. One in seven Black African,one in eight Black Caribbean and one in every 450 White British new-borns carries a sickle cell gene. A sickle cell attack, known as a “crisis”, can occur at any timeand cause excruciating pain in any part of the body. The cure for sickle cell is bone marrow transplant but this is not universal and you need to have a suitabledonor. Sickle Cell is therefore managed with medication and this can include strong opiates.

“Normal blood cells are round, “explains Kalpna,” but when you go into a crisis it turns into a crescent shape and that stops your oxygen from flowing through yourbody. The pain can happen anytime anywhere and be in your arms, legs, back or chest. It can last hours, or days or even weeks.”

Sickle Cell Society & Krio Descendants Unionawareness event as part of Southwark's Black History

Month Programme

Catch me if you can!


Service User News | 13News Review | Sickle Cell Society

Ade has always had the condition but it didn’t really manifest itself until it started affecting him playing sport atschool. “I had my first incident playing five a side football. I kicked the ball really hard and it began to hurt. Ididn’t know what it was but it was constant pain. I went to hospital and was there for two days.” Born and broughtup in east London he attended Forest Gate Community School where the sports were football and athletics. Atalented footballer he knew little of rugby until a PE teacher from Bradford, Andy Hurst, suggested he try rugbyleague at his old club, the London Skolars.

He got his first taste of the sport at 15 and was hooked. “It was a shock but it’s a great sport and I just took to it,I love it.” In fact, he was so besotted by it that when he was offered a trial with Tottenham he opted to representthe South at rugby league instead. He was soon spotted by the London Broncos and played for them at under-16s and under-17s level. Because the Broncos didn’t have an under-21s side he, along with other rising youngstars Louie McCarthy-Scarsbrook, Mike Worrincy and Ian Lane, spent a season at Hull FC. Being at Super Leagueclubs meant training went up several notches in intensity as he got older. It’s tough for any young athlete letalone one with sickle cell disease but Ade was determined not to let it affect his career. In fact he believes thatrugby league has helped him to cope with the condition. “I had never done anything as intense as when Istarted playing rugby league,” he said. “Rugby league is all about being mentally strong as well as physicallystrong and that has undoubtedly helped me to deal with the condition.

“I’ve found there are trigger points. Sometimes when I’ve played rugby and it’s been a very, very intense game I’ve got to a point I’ve never reached before andthat triggers it. “No one in rugby league has ever treated me differently. You get some coaches who don’t know anything about it and just think you’re being lazybut others who do and work around it.”

Early in his career Phil Jones, head of youth performance at the Broncos, became something of a father figure and John Kear, the coach when he was at Hull, didunderstand the condition. But as Ade began training with first team players and internationals, he found it tough. “We’d be running for three hours and physically Ijust couldn’t do it, I simply can’t carry the amount of oxygen a normal person can,” he said.

Kalpna explains: “A normal person would take one deep breath but a person with sickle cell disease would have to take two deep breaths to take in the sameamount of oxygen. You have to drink lots and lots of water to stay hydrated. For a normal person the recommended amount is two litres but for someone withsickle cell disease it would be twice the amount. Obviously doing physical activity makes it worse and rugby is a tough sport. “Years ago people with sickle celldisease would be told they couldn’t play sport and youngsters told they couldn’t go out and play. Now we say ‘go out, live your life but learn about your condition,learn to manage it and know your limits.’

Ade can relate to that because his Mum used to stop him from doing what he wanted to do when he was young. So what did she think when he took up RugbyLeague? “She didn’t know I was playing professional rugby for two years. Me, my uncle and everyone kept it from her because she was scared!” In fact when hewas at the Broncos he used to tell her that they were a football team!

Kalpna says; “It’s natural for parents to want to protect a child with sickle cell disease. On a daily basis, children with sickle cell disease face many challenges livingwith their condition. They spend a lot of time in and out of hospital, which means they miss a lot of school, they can have a limited number of friends and as aresult can become quite isolated.”

Ade was determined to succeed and as an 18-year-old he made his Super League debut for the Broncos in the last game of the 2004 season against LeedsRhinos at Headingley. Finding first team rugby hard to come by in the ensuing seasons at the club he opted to drop down a division and sign for Doncaster, whowere assembling a full time squad with a view to securing a place in Super League. Doncaster got into financial difficulties and went into administration so afterseven appearances, in which he scored five tries, Ade found himself without a club. Stress can produce a ‘sickle cell crises’ but luckily he was picked up byFeatherstone Rovers and played the rest of the season with them.

The following year, 2008, he moved up to Whitehaven and had one of his best seasons, scoring 22 tries in 30 appearances and becoming the league’s top tryscorer. The next season he picked up a few injuries but still managed 10 touchdowns in 19 appearances before deciding to come back to London to join his oldclub, the Skolars. He has proved a prolific try scorer for them over the last three seasons despite his condition. The Rugby Football League’s very tough drug-testingpolicy doesn’t make life easy for someone like Ade. On a daily basis Ade has to complete a special form to indicate all the medications taken.“I take morphine on regular basis, in fact all the painkillers I’m taking are banned by the RFL, I have to have a special form and I’m expected to write every singlething down on a daily basis but sometimes I forget.”

Ade says it’s hard to describe the pain, “It is10 times worse than toothache” he suggests, while Kalpna adds; “It’s like an axe constantly cutting into you”. Becausethe pain is so severe the only way you can control it is by taking regular pain killers like morphine. There’s no way you can go without some form of pain relief for afew days or hours because the pain is so excruciating”. Ade acknowledges that he’s been fortunate to have had great support throughout his career which hasmade enormous difference to his life. While at Whitehaven he met Steve Morgan, a director for BNL at Sellafield.

Ade says that Steve was like a father to him, helping him and giving invaluable advice including telling him to think of a career outside of rugby. When Morganbecame a director of BAA he kept in touch and when Ade moved back down to London, he introduced him to Mark Dobson, owner of Wilson James where henow works. “Having sickle cell disease, its tough trying to find a career,” admitted Ade. “Sometimes, when you have to be in meetings etc. you may be in hospitalbut Wilson James gave me a chance. They have supported me in every aspect of my life. They even sponsor the Skolars, which they do to support me. AnythingI try and do in life Mark supports me.” Ade is very, very lucky to have so much help and support in his career, according to Kalpna, “There are so many children andadults who don’t get the support they need. Without the right education, treatment and support they will have less chance of survival”.

“There’s a lot of stigma around families, particularly among men, because of lack of knowledge about the condition. They can be isolated and avoid going tohospitals because sometimes people think they’re on drugs and come in because they have a habit. It’s just that they are in so much pain and need strong painkillers. Because they often don’t get treated properly in hospitals they stay at home and try and manage it, which can be dangerous if they’re self-medicating.”

Ade’s brother and two sisters both have sickle cell disease and by joining the Society he hopes he can help people with the disease, by raising awareness andfundraising. “I want to do everything in my power to help the Society,” he says. “I want to speak to as many people as possible, to get children and parents tounderstand the condition” he said.

“I’m not saying, ‘do what I’ve done’, because what’s happened to me is exceptional, I had this mental toughness at an early age because of rugby league. Butsickle cell disease shouldn’t stop people going out, going for walks, and running, going to the gym or trying to get into a team. In the past people have treated itas a bad thing, but you just have to be sensible and manage it. I’m proud to say I’ve played rugby professionally and I’m still doing it”.

“And he scores again “


Sickle Cell Society | News Review14 | Support Group News

SUPPORT GROUP NEWS

A Sickle Cell Society Workshop for CarersBy Hannah Kupoluyi

In an effort to raise awareness and educate carers living with the disease, the Sickle Cell Society held a

free, one-day service user/carers workshop on Tuesday, 16th of October 2012 between 10 am to 2pm at

the Oasis Centre, 75 Westminster Bridge Rd, London SE1 7HS. The aim of this workshop was to educate

service users / carers about managing sickle cell disease as well as to inform attendees about Disability

Living Allowance (DLA) and other benefits and forthcoming changes in the NHS that will begin to take effect

from next year 2013. Mr Patrick Ojeer from the Sickle Cell Society explained the impact of the NHS changes

and how these will affect carers and their families. Then he encouraged us to be part of the local Health

Watch (links) in our local communities, so that we can be part of shaping the health service as well as

raising awareness on sickle cell disease and the challenges we experience as carers/parents. Furthermore,

he told us to volunteer our time, and know more about the clinical commissioning group in our local area,

so that we can be part of the changes in the NHS. After that a sickle cell social worker, Zita Noone spoke

about the changes to DLA and how these will affect many people who have disabilities and who are on

welfare benefits, and the appeal process, as well as our rights as carers. Finally, the Society’s Regional Care

Advisors, Iyamide and Comfort launched a carers’ forum. This had come about from discussion among

carers who had attended a spa day trip, organised by the Sickle Cell Society. I was pleased with the

workshop, and I gained a lot from it. For example, I am now part of the community conference group as

well as a member of the Health Watch in my local community.

Front: Mrs Bernice Thomas and mayor of Wandsworth Cllr Adrian Knowles

Back: Trustees and Professional Supporters of the Wandsworth Sickle Cell and Thalassaemia

Support Group (WSCTSG)

Photo Credit: Wandsworth Guardian

Wandsworth's Sickle Cell and Thalassaemia Support Group gathered on the9th June 2012 to commemorate their 20th anniversary.Over 100 people, including friends, family, health professionals and community groups attended the event, held at Balham Methodist Church. The mayorof Wandsworth, Cllr Adrian Knowles, was also in attendance.

The event recognised the contributions of volunteers, supporters, and members who have been instrumental to the groups continuing development. Speecheswere given by service users and health professionals and there were also performances from talented young artists.

Mrs Bernice Thomas, founder of the organisation, said: "It was a lovely day. Volunteers and colleagues who have supported us came out to celebrate theday with us. We remain committed and will continue to raise the awareness for Sickle Cell and Thalassaemia and support members and families”.

The Sickle Cell and Thalassaemia Support Group of Barking & Dagenham and Havering celebrated its 10th

Anniversary on Saturday 10th November 2012 at the Ripple Centre in Barking. The event was attended by

over 60 people, these included Dr. Asa’ah Nkohkwo, Iyamide Thomas, Comfort Ndive and Patrick Ojeer from the Sickle Cell Society and Dr. Nola Ishmael.

Also present were the ex Mayor of Barking & Dagenham Cllr Milton McKenzie who chaired the event as well as Mr. Matthew Coles and Dr. Justin Varney both

of NHS Barking & Dagenham. Apart from presentations on the discovery of sickle cell and forthcoming changes in the NHS by Iyamide Thomas and Asa’ah

Nkohkwo respectively the event was an opportunity for the launching of the Sickle Cell & Thalassaemia support group’s website by Dr. Justin Varney

(www.sicklecellbhr.or.uk) and an A – Z family guide book on Sickle Cell by Cecilia Shoetan. A comedy performance by service user Ade Aluko got the whole

crowd in stitches. We also had lovely catering and a celebration cake. Cllr. Milton McKenzie presented 13 Members including trustees, volunteers and service

users with awards.

The ten years have been very challenging; we have worked hard to bring about changes in our communities but more work needs to be done. There has

been tremendous increase in the numbers of service users in the area from 25 in the first year to the current 180. However, there are now fewer resources to

look after them and more support is required.

Cross-section of audience at even

Barking & Dagenham and HaveringSickle Cell and ThalassaemiaSupport Group celebratesits 10th Anniversary


SERVICE PROVIDER NEWS

Service Provider News | 15News Review | Sickle Cell Society


NHS SCT Screening Programme News

cell/unusual haemoglobin and also our factsheets on sickle cell and

thalassaemia.

Programme Review

A review of the Programme’s work over 2011/12 is now available at:

sct.screening.nhs.uk/annualreport It includes the Programme’s key

achievements over the year, from quality improvement to training and

education and raising our profile through communications. The Review

provides an update on our latest available data (2010/11) including

information about carrier rates by ethnicity. Please see the table below:

Ethnicity Rate

All babies 1 in 70

Black African 1 in 7

Black Caribbean 1 in 8

White 1 in 450

Rates of sickle cell gene carriage by ethnicity for England based on

newborn screening results.

Our fourth data report will be published in the new year and will carry

information on the geographical spread in England of sickle cell disease.

Update on Specialist Commissioning

Specialist haemogolobinopathy services will be commissioned by the

NHS Commissioning Board from April 2013. This commissioning will

include all care provided by specialist haemoglobinopathy centres

including in-patient care where the cause of admission is related to

blood disorders. The service will include outreach provision for adults and

children. The screening programme has valued its involvement with the

clinical reference group that has provided expert clinical input to the

process and has worked to ensure the interface between screening and

care is as smooth as possible. However, it is not clear if the Programme

will remain a member of this group under future arrangements.

All change at the SCT Screening Programme

Proposed changes in the structure of the NHS mean that during 2012/13,

the NHS Sickle Cell and Thalassaemia Screening Programme will

integrate with the family of non-cancer screening programmes and

move into Public Health England (PHE). The English NHS SCT Programme

will continue to offer screening, and a smaller programme centre, led

by a Deputy Programme Manager who will replace the current

Programme Director will oversee standards and support staff and our

stakeholders. The restructuring of personnel at the programme centre is

currently in progress and the location proposed for all newborn and

antenatal programmes is PHE headquarters based near Waterloo

station, London.

Adult Carrier Leaflets

The NHS Sickle Cell and Thalassaemia Screening Programme has

launched its suite of eight adult carrier leaflets covering the carrier states

which are identified as part of our linked antenatal and newborn

screening programme. The leaflets are designed to support the

communication of haemoglobinopathy carrier results to adults, during

antenatal screening or testing at any other stage in life. They will enable

people to better understand their carrier status and what it means.

Please go to sct.screening.nhs.uk/adultcarrierleaflets for the full list. The

leaflets complement our other materials such as Test for Dads,

Information for mums and dads: Your baby carries a gene for sickle

APPG Autumn Update – October 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 peopleaffected by the conditions. The Sickle Cell Society provides direction to the group, along with the UK Thalassaemia Society (UKTS) and other stakeholders.

It has been a busy few months in the world of Westminster.

The APPG’s summer work kicked off with a celebration of World Sickle Cell Day, marked by an Early Day Motion in the Houses of Parliament:

That this House celebrates World Sickle Cell Day on 19 June 2012; notes that sickle cell disease is the most common genetic disease in England; furthernotes the employment issues facing patients living with sickle cell disease, including the link between education and employment, the importance ofemployer flexibility and the lack of Government attention on these issues, which falls between the remits of health and employment agencies; furthernotes the comparative lack of research into haemoglobinopathies compared to other disease areas; urges the Government to support greater researchinto haemoglobinopathies; further notes the importance of effective transition care for patients moving from paediatric to adult services; and calls onthe Government to continue to support the work of the voluntary sector in improving awareness of sickle cell disease within the communities affectedin schools and amongst the wider public.

This Early Day Motion, signed off by the Sickle Cell Society, was tabled by APPG member John Leech MP and was signed by 28 MPs in total. 28 signaturesis an encouragingly high number of signatures for an Early Day Motion and it is confirmation of the on-going support in Parliament for this importantcause.

The APPG also held a roundtable in Parliament on 25th June to discuss the issue of the often-difficult transition between paediatric and adult care.Luhanga Musumadi, a lead nurse for adolescent transition at Guy’s and St Thomas’ Hospital spoke at the event and outlined what was involved in transition


Sickle Cell Society | News Review16 | Service Provider News


and how it could be improved. The APPG also invited Katie Budu-Manuel, a sickle cell patient with a mixed experience of transition care to present thepatient’s perspective, which was a very moving and informative contribution to the meeting.

This gathering helped to highlight to APPG members and other stakeholders some of the main concerns felt by the sickle cell community, particularlyaround the apparent lack of specialist transition nurses working in this disease area. Why, given the relatively high prevalence of sickle cell diseasecompared to other genetic diseases, were there so few (perhaps no more than one!) transition nurses working in the UK?

APPG Chair, Diane Abbott, was keen to investigate this issue further and agreed that the time had come to arrange a high level political delegation tomeet with the Minister for Public Health to bring this issue directly to the Government’s attention. This meeting, originally scheduled for September, wasunfortunately cancelled due to the Government reshuffle in which Anne Milton MP was replaced by Anna Soubry MP. The APPG welcomes Ms Soubry toher new role and looks forward to re-scheduling this meeting to discuss this very important issue.

Research into haemoglobinopathies is another area around which the APPG has continued to provide support. The forthcoming meeting with the newMinister will be an opportunity for APPG vice Chair, Lord Smith, to raise the significant problem of the current lack of research into many aspects of basicscience, translational research and health systems design in haemoglobinopathies compared to other disease areas.

It has been a busy few months, but there has been no letting up for the APPG, which has just completed its summer consultation in order to agree itsprogramme of work for the next year. The Sickle Cell Society has been actively involved in the APPG’s summer consultation and we thank it for its help inthis. Some of the key issues that have been put forward have been education about genetics, sickle cell and thalassaemia in the new health landscape,empowerment and self-management, blood donation, data management and prescription fees. The APPG Secretariat will be liaising with Diane Abbottabout these various issues in order to decide which three areas are taken forward.

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 celldisease in Parliament by writing to your MP and encouraging them to join the APPG. For help on how to write to your MP please contact the Sickle CellSociety.

On 26th April 2012, the NHS Blood and Transplant (NHSBT) launched an appeal for donors to help boost stocks to 30% above usual levels by the start ofthe Olympic Games in July 2012.

The increase was essential because of the unusually high number of public events that were taking place in the UK this summer, including the OlympicGames. Past experience shows that even regular donors miss appointments during national events and celebrations as routines are disrupted. This,combined with the high numbers of international visitors with a different native blood mix to our own may also put high demand on specific blood groups.

The higher than usual number of public holidays and sporting events and the Jubilee celebrations required forward planning to ensure anticipateddemand can be met. Active donors in particular, including 120,000 in the capital itself, were asked to donate blood if they were eligible between beforethe start of the Olympics, to help build stocks before the major event began.

To help launch the campaign, Kalpna Patel from Brent, West London who received an exchange blood transfusion, which saved her life following thetreatment of her sickle cell beta thalassaemia, appeared holding hands with a body painted blood donor to raise awareness of the need for existingand new donors to give blood

Working with NHS Blood and Transplant Service(NHSBT) Donor Appeal

Donor Models with Blood Recipients Donor recipients second left Kalpna Patel, Sickle Cell Society Fundraising

Manager with other Blood Recipients

APPG continued...


Service Provider News | 17News Review | Sickle Cell Society

Let the Story be told: Sickle Cell Disease a Sierra Leonean Discovery!By Iyamide Thomas – Regional Care Advisor, South London


As the theme of our Xmas newsletter is Black History, it seems a good time to reflect on an innovativeway that was used to raise awareness of sickle cell disease whilst also combining an aspect of ‘BlackHistory’. On 15 June 2012 an event billed ‘Let the Story be Told: Sickle Cell Disease – a SierraLeonean Discovery’ was held in the London Borough of Southwark and was a collaboration betweenthe Sickle Cell Society and the Krio Descendants Union (London). A UK first, this event raised awarenessof sickle cell disease and innovatively combined aspects of Krio history and heritage of the Krio individualwho first wrote about the condition long before its Western ‘discovery’ by James Herrick in 1910!

Most text books or publications on sickle cell will tell you that it was discovered in 1910 by Dr James Herrick an American doctor from Chicago, when helooked at a blood smear of one of his anaemic patients under a microscope and saw ‘peculiar elongated and sickle shaped (i.e. half-moon shape)cells’. However, this is only when the disease first became known in the West. Long before this, Dr Africanus Horton an illustrious Krio doctor born in SierraLeone (of Igbo parentage) gave the first written account of the disease that Herrick subsequently called ‘sickle cell anaemia’. In his book ‘The Diseasesof Tropical Climates and Their Treatment’ published in 1874, Africanus Horton described various features of an inherited disease, including persistentabnormality of blood, painful crisis associated with fever and increased frequency of the painful episodes during the rainy season and cold weather.Africanus Horton described all the symptoms that we now know to be the hallmark of sickle cell disease and though there might not have beenmicroscopes during his time, I believe that the story should be told and this Sierra Leonean born andeducated Krio surgeon, scientist, soldier and political thinker who worked towards African independencea century before it occurred, should be seen as the true ‘discoverer’ of sickle cell disease! (Of course, Imust be open and declare that I am also Krio myself).

As part of the NHS Sickle Cell and Thalassaemia Screening Programme’s outreach work targeting Africanand Caribbean communities to raise awareness of sickle cell disease and testing, I have shown the‘Family Legacy’ DVD drama in interesting and varied settings and this screening on 15 June was yetanother innovative setting I thought of. Around 80 people packed into the crypt at, St Peters in LiverpoolGrove, a popular Sierra Leonean Friday evening meeting place for this special event. Sierra Leoneanhistorian Dorinda Harding (dressed in typical Krio attire of ‘Print’ and ‘carpet slippers’) gave a short historyof the ‘Krios’ the descendants of freed slaves - from Britain (the ‘Black Poor’), from America (the ‘ NovaScotians’ ), from Jamaica (the ‘Maroons’) and slaves that were recaptured at sea ( the ‘Recaptives’ or‘Liberated Africans’) – who were all resettled in Freetown, Sierra Leone.

Krios like Africanus Horton went on to become some of Africa’s first doctors, lawyersand administrators. Yes as early as the 1800’s Africans were excelling and getting degrees from UK universities! This short history lessonwas followed by Madonna Johnson who spoke of her ancestor Thomas Peters, the freed slave who together with British abolitionistssuch as Granville Sharp and William Wilberforce advocated for the resettlement in Sierra Leone. In December 2011, a statue waserected in Freetown, Sierra Leone to commemorate Thomas Peters as the ‘Founding Father of Freetown’.

After the history lesson followed a presentation on ‘the real discovery of sickle cell’and the screening of the Family Legacy which many of you must have watched bynow! If you have not yet seen it, visit www.familylegacy.org.uk. Nigerian film producerObi Emelonye (‘Mirror Boy’, ‘Last Flight to Abuja’) was at the event and gave aninteresting and amusing account of his experience when tested for the sickle cellgene after the birth of his child. The reaction to the Family Legacy from the mainlySierra Leonean audience is one of the best I have witnessed. They laughed wherethere was humor, empathized where there was pain and rebuked where there wasdenial!

A very interesting discussion followed with a panel that included two sickle cell nursespecialists showing that people had been usefully educated whilst being entertained.The entertainment did not stop there; there then followed a performance of actressAnni Domingo’s Krio translation of Maya Angelou’s famous poem ‘Still I Rise’ called

‘Ar go Grap’ in a rendition like you have never heard before! Sickle cell service user Adebisi Aluko thenthrilled the crowd with his own brand of comedy. The programme then came to a close, with the distribution of ‘goody bags’ and as the crowd departedthere was general agreement it had been a thoroughly enjoyable and educational evening.

As a result of the success of the June event, the Sickle Cell Society and Krio Descendants Union successfully bid to put on a similar event in October aspart of Southwark Council’s official Black History Month 2012 programme. This event took place on 12 October and was billed “The Krios of Sierra Leonecelebrating their heritage and discoveries”. It attracted over 130 people and in addition to sickle cell disease featured a discovery in relation to insulin.Yes, you have guessed it; another Krio doctor sure had something to do with that too!.

Edinburgh University Plaque recognising AfricanusHorton as their first African graduate

DorindaHarding recitesthe history of

the Krios

Iyamide Thomas introduces Adebisi Aluko

Cross-section of audience


Sickle Cell Society | News Review18 | Research & Development


Floella Benjamin gets Action for Children’s Arts award

The JM Barrie Award 2012 was presented to

Baroness Floella Benjamin

At a Champagne Tea at BAFTA, 195 Piccadilly, London W1J 9LN. On Saturday 20 October 2012.

Dr Asa’ah Nkohkwo attended theevent, among the guests ofFloella, including TV presenterSarah Greene and actor RudolfWalker of the BBC’s Eastendersfame!

The Action for Children’s ArtsJ.M.Barrie Award is given annuallyto a children’s arts practitioner ororganisation whose work, in theview of ACA, will stand the test of time.

2005 Dick King-Smith2006 Judith Kerr2007 Oliver Postgate and Peter Firmin2008 Quentin Blake2009 Roger McGough2010 Shirley Hughes2011 Lyndie Wright2012 Baroness Floella Benjamin

SICKLE CELL CONDITION ADVOCATES (SICCA) IN GHANA, WEST AFRICASickle Cell Condition Advocates (SICCA), is a registered non-governmental organization in Ghana, West Africa. SICCA is involved in several activities whichaim at educating, counselling, and raising awareness of the sickle cell condition. SICCA is looking at the challenges across all aspects of the sickle cellcondition; from pre-conception to living and caring for people with the sickle cell condition and their families. Education in schools, among faith groups,training of health professionals is done to create awareness. As we encourage the youth to test to know their sickle cell status, the media is also used asa means to reach out to all with our message of preconception screening.

SICCA was given the mandate in 2010 to embark on Sickle Cell Advocacy Project covering the whole of Ghana.

The aim of this project was to:

➢ Establish sickle cell clinics in the regional hospitals which will serve as the point of call for patients with the sickle cell condition, allowing them

to receive prompt attention

➢ Conduct workshops for doctors and nurses on care protocols for sickle cell condition

➢ Conduct outreach programmes to create awareness of these efforts allowing the general public to take advantage of the intervention

➢ Conduct promotions on preventive health care for people living with the sickle cell condition

➢ Educate the public to effectively reduce sickle cell stigmatization, mortality incidents and reduction in birth of affected children through

preconception screening.

The team began the project by formally training coordinators and volunteers. Two coordinators were trained in each region, one each from the RegionalHealth Directorate and one from the Regional Education Directorate. Volunteers who were registered with SICCA were also trained with the coordinators.Formal education and counselling was done in almost all Health Training Institutions and Senior High Schools in the three regions. Informal education andcounselling was community- based health education, mass media and public events supported health education using public drive such as; radiodiscussion programmes, talk shows, community Town Hall meetings and information van community announcements. Flyers, posters and billboards werealso used in all these promotions.

SICCA liaised with social activists and organizations like the Regional Coordinating Council, the Municipal Health Directorate, The Ministry of Information,Department of Social Welfare, Media Houses and some Community Leaders in all the three regions. Before any of these came on board the programme,the staff were also given a presentation so they could understand the programme.

TV presenter Sarah Greeneand Floella Benjamin.


Research & Development | 19News Review | Sickle Cell Society

With the approval of school authorities, students helped to organise Blood Donation and EyeScreening Exercises in all three regions. This was a form of creating awareness and making thepeople in the community realise the importance of stocking up the blood banks in the hospitalsso that when sickle cell patients needed blood, they could always be assisted. Eye screeningwas also done for sickle cell patients to see the need for regular eye test.

A workshop was organized for some selected health professionals involving doctors, nurses andlaboratory technicians from the three regions. This was strategically planned to get a crosssection of health professionals in both public and private hospitals and clinics in the northernpart of Ghana well informed of the standards for clinical care and management of peoplewith sickle cell condition. They were to pass on what they learnt to others in their own careprotocols for sickle cell patients.

SICCA, through the wonderful cooperation and help we had from all stake holders in all thethree regions especially the Regional Hospitals, where we were given an office for the project,successfully opened Sickle Cell Clinics and a Counselling Unit in all the three Regional Hospitalsat the end of the period of our stay. The team also facilitated the organization of Sickle CellSupport Groups made up of patients, parents and supporters. With the help of the volunteersthese groups will be involved in the Blood Donation and Eye Screening Exercise to continue with what SICCA did.

CONCLUSION:Great changes in sickle cell awareness were created in the northern part of Ghana through this advocacy project. With similar efforts in other regions ofGhana as well as other parts of the world where sickle cell poses a challenge and with the adoption of recommendations SICCA made, there is genuineprospect of greater worldwide change on the horizon. There were three recommendations:

1. Structured training programmes for health professionals on latest care protocols on sickle cell condition.2. An organized “Know Your Sickle Cell Status” campaign at all educational levels right from basic school.3. Since it is United Nations recommendation for all to recognize that sickle cell is a major health issue and that there is the need to increase

awareness of the world community, SICCA recommends that logistic and financial support should be given to programmes like this projectsince it does not take too much funds to embark on such projects if all stakeholders get on board.

A key milestone was reached when SICCA signed a Memo of Understanding (MOU) with the Ministry of Health. The Ministry of Health of the Governmentof Ghana took up this advocacy project, the first of its kind in the country, in compliance with the United Nation’s (UN) plea to all nations to recognizesickle cell disease as one of the world’s foremost genetic diseases. There is the need to raise awareness of sickle cell since simple interventions for thecare of people with sickle cell can reduce illness and deaths and improve the quality of lives of people living with the condition. In response to calls formore of these interventions, SICCA has to double its efforts in its role as advocates to make a difference as best as it can. This Project will be extendedto other parts of the country and some other parts of the world with the support of all stakeholders and donors who see our vision.

By Charlotte Owusu - Sickle Cell Condition Advocates (SICCA)

The NHS is currently being required to make significant cuts in its expenditure, putting extra pressure on all clinical services including Sickle Cell. This makes it all the more important for clinicians and commissioners to have information with which it is possible to fight for funding to maintain and improveavailable Sickle treatment services. Without the information that the NHR is capable of providing, such as patient numbers, locations, therapy etc. this will becomeincreasingly difficult when compared with other clinical services that are readily able to provide such information. This really highlights the importance of ensuringthat all people with Blood disorders register on the NHR.

As well as capturing data on accessibility of treatment services for patients, the NHR also provides an adverse event alert system, which is monitored by keyclinicians for events such as deaths, strokes, and ITU admissions. This provides a national oversight function to review and if possible improve treatment to reducethe frequency of such events.

The NHR is also working to identify and standardise best treatment practices through introducing standards for annual reviews of patients. This will help ensure thatall patients receive the same standard of care at treatment centres and provide clinicians with a mechanism to review and record patient care.Finally, the NHS in recent years has changed its focus to look for evidence of effectiveness of treatment. This is known as outcome data and it is vital that this datais captured to ensure that the current treatment practices are delivering the best standard of care for patients. This type of data is captured over a number ofyears and the NHR is the national mechanism to capture this data for Sickle Cell.

Considering the above, we hope you can see the importance as a patient in registering on the NHR to help maintain and improve your treatment services. Toregister for the NHR please contact your treatment centre and ask to be registered. It is important to note that you will not be registered onto the NHR withoutgiving your consent.

Dr Rob Hollingsworth Website: http://www.nhr.nhs.uk/

Charlotte Owusu addresses schoolchildren on sickle cell



Why develop Life Span Self-Management Programmes for people withSickle Cell (SCD) and Thalassaemia?

Identifying the need• Average life expectancy for someone living with SCD is in the region of 50-

60 years which is significantly lower than the current average life expectancy in the UK. 1

• Around 8,000 people who have SCD will have at least one ‘crisis’ or episode each year.

• Up to 10% of young people living with SCD will have a stroke before they reach 20 years of age and in up to 20% MRI scans show changes indicating silent stroke. 2

• ‘A Sickle Crisis?’ (May 2008), the report produced by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) recommended that SCD patients should be much more actively involved in their own care.3

• Currently there are no disease-specific and culturally appropriate self-management programmes available for young children/parents, adults and carers, living in families affected SCD and thalassaemia in the UK.

• Participation in the generic Expert Patient Programmes (EPP) by people with SCD and thalassaemia is low. In the Heart of Birmingham PCT efforts to recruit participants to an EPP course by a BME provider were not successful.4

Current health service utilisation• Acute episode of SCD associated pain is one of the commonest reasons

for hospital admission in London. 3• Between 2001-2 and 2009-10 there has been a 50% increase in SCD

hospitalisation.5• SCD related hospital admissions cost the NHS an estimated £16m in 2009-

10.6• Patient survey’s currently show that they prefer to use acute services rather

than primary care. 7,8 Although some aspects of on-going treatment could be successfully provided via primary care.

Potential Benefits of developing culturally appropriate Life Span SCD & Thalassaemia Self Management Programmes

For people living with SCD and thalassaemia• Higher levels of self-efficacy are predictive of lower levels of symptomology

and health service utilisation for people living with SCD.9 Raising self-efficacy is a core objective of a good self-management programme.

• ‘Based on the results of almost 600 studies published in the UK and internationally, there is evidence that supporting self-management can improve people’s quality of life, clinical outcomes and health service use’ (Helping People Help themselves, The Health Foundation, 2011).10

• Research also suggests that people who have lower self efficacy and health related quality of life, or are coping poorly with their condition are the people who gain most from participating in a self management programme.11 Currently people living with SCD and thalassaemia experience some of the highest inequalities in terms of public health outcomes such as quality of life and, therefore, have much to gain if they are able to access an appropriate self-management programme.

For health care utilisation• Proactively supporting self-management, focusing on self-efficacy and

behaviour change can have an impact on clinical outcomes and emergency service use.10

• Indicative cost savings on admissions to hospital in London SHA alone could be in excess of £1.9 million per year if effective Life Span Self-Management Programmes are developed, are fully accessible and well attended across the region.12

• Better family stabilisation,13 more effective health service utilisation and potential cost savings could also be made by providing appropriate on-

going support and treatment in community and primary care settings, rather than acute care. Especially, if people living with SCD are able to self manage more confidently having attended a condition specific self management programme.

Inequity• The Health Foundation review highlights that some clinical conditions require

both ‘technical’ education and cognitive behavioural interventions for effective self-management, the example given is diabetes,10 (for which there are many disease-specific self-management education programmes in the UK).

• There are numerous conditions such as diabetes, rheumatoid arthritis and multiple sclerosis, to name a few, for which condition-specific self-management programmes are available.14,15,16

• The pathologies and debilitating nature of SCD and thalassaemia are as serious, if not more so, as those for diabetes, rheumatoid arthritis and multiple sclerosis.

• The significant rise in hospitalisation in the last decade is one indicator that access to a suite of appropriate, condition-specific self-management programmes covering all life stages, is urgently needed for people living with SCD and thalassaemia.

• That, there are no appropriate self-management programmes for people and their families affected by SCD and thalassaemia currently, is inequitable and unacceptable in a land which is committed to equality of provision and access to health services.

How Self-Management Would Fit within the new NHS CommissioningParadigm: as an essential element of an integrated care Community Hub(Fig-1)

Fig-1 The Model Community Hub Functionality: a patient-centredcommunity-focused approach to enable integration across the sickle andthal care pathway, enhance service user satisfaction and decreasehospitalisation. (Nkohkwo A, Chacon A, Cavanagh, S, Phekoo K. 2012)

A last word…the missing piece of the jigsaw….There is a good deal of research available from the US and from the UK whichshows that there is a great deal of variability in the respect, understandingand compassion which health and social care professionals give people livingwith SCD who need their care. Add this to the cultural imbalance that iscurrently widely inherent in the doctor-patient relationship and that, on thewhole, clinicians do not understand self-management, or how to activelysupport their patients in this; and an important missing piece of the jigsaw isidentified. To make all patient-focussed SCD condition-specific self-management initiatives truly effective, creation of a programme whichaddresses clinicians learning and development needs in this area is alsoessential.

References (available from the Society)

Life Span Self-Management Programmes for peoplewith Sickle Cell and Thalassaemia: a health andinequalities challenge in the new NHSBy Sally Cavanagh & Asa’ah Nkohkwo - Correspondence to: Dr Asa’ah Nkohkwo, Sickle Cell Society,54 Station Road, London, NW10 4UA. Email: [email protected]


Research & Development | 21News Review | Sickle Cell Society

COMPREHENSIVE CARE IN SICKLE CELL DISEASE: As we enter NHS COMMISSIONINGDr Asa’ah Nkohkwo FRSPH - Adviser, Sickle Cell Society

Readers of Sickle Cell News Review willrecall a number of articles over the lastcouple of years alerting us to impendingchanges in the NHS towards an era ofCommissioning (ref SCS News ReviewSummer 2012). In particular, the last 7months have seen intensifieddevelopments within the framework of“minimum take” in preparation forbudgeted commissioning to take effectfrom April 2013. Such is the magnitude ofthe impending changes that it would benecessary to revisit the topic. In thisarticle, Dr Asa’ah Nkohkwo (previouslychief executive of the Society) updates,as promised, where the Society stands onthe developments.

Suffice to confirm that sickle-cell diseasehas been designated as a specialistcondition (SSNDS No 38,www.specialisedservices.nhs.uk/info/specialised-services) in the new NHSarrangement. While this commendablymainstreams our cause, the inherent riskof the specialist definition must behighlighted upfront and yet again. Insummary, we must ALL be on the look-outlocally and nationwide, that a widerdeterminant approach is adopted,including non-medical yet vitalcomplementary services which are quiteoften needed by service users, (as shownon Table-2) especially when they will beout of the hospital system (the focus ofspecialised commissioning). With acouple of screen shots from hisnationwide itinerary, Dr Nkohkwo highlightsthe main issues, finishing off with not onlyhow the Society has been vigorouslyengaging the stakeholders, but a call-outthat we all get involved with emergingscrutiny arrangements such asHealthwatch, Health Boards/ Senates andof course our very own All-PartyParliamentary Group.

NICE= National Institute for Health &Clinical Excellence, will have anenhanced role, building on its previouswork to ensure that treatment guidelines

are developed and standardised, whilenew technologies will also be scrutinisedfor suitability for the NHS use.CQC = the inspectors of treatmentcentresHealthwatch = health watchdogs... justthat !Monitor = will ensure fair competitionamong the providers of healthcare.

Commissioning = in essence a cyclicalprocess whereby health needs will beassessed and met, with expectedinvolvement of the service users, so as toensure that the service will be asresponsive as possible to the needs of theusers.

Table-2 depicts the annual workload of atypical Support Care Officer of the SickleCell Society in London, provided by theSickle Cell Society. One officer wouldideally serve a catchment of 500 serviceusers. In addition, the picture we foundacross the countr y during theComprehensive Care project itinerary(2009-2012) the message could not beclearer- non-medical issues are veryimportant too, and ought to be includedin commissioning arrangements. Indeed,this was confirmed by the DH’s very ownfindings as previously reported. Theeffective solution for quality care underthe new arrangement, we believe, will becomprehensive & integrated care,

preferably involving a “Community Hub”focus.

A strategy paper was therefore submittedin February to government- DH & NHSCommissioning Board Authority- andParliament. The lobby for responsiveintegrated care (including a CommunityHub) has intensified during 2012 withprogress as outlined on Table-3.

Baroness Benjamin chaired a meeting atthe House of Lords on 9 October. Themeeting had been arranged by Earl Howe(DH Minister for Quality) who wanted theDH Commissioning Team to meet with theSociety to discuss arrangementsconcerning Comprehensive Care forsickle-cell disease during the era ofcommissioning. Baroness Benjamin iscontinuing with engagements thatresulted from the very promisingdiscussions.

Meanwhile, we ask that everyone remainsalert. Indeed, we ask that wherever youare, you get involved with your localarrangements for scrutinizing healthcarein the future, to ensure a responsiveintegrated care arrangement in yourarea. Hence, we would like to finish offwith a reminder of the key role that thegovernment ’s HealthWatch will beplaying. So, please do get involved withyour local Healthwatch. If in any doubt asto how, please do not hesitate to contactthe Society



Dr Margaret WilsonConsultant Restorative Dentistry, Manchester

It is now generally accepted that achieving and maintaining good oral health is part of the overall picture of achieving a healthy lifestyle. This istrue for the general population, but has even greater significance for patients who in addition have to live with a chronic medical condition. The majority of common dental diseases, periodontal disease (diseases of the gums and supporting tissues) and dental caries (dental decay) arecaused by bacteria living in bio-films (dental plaque) on teeth and soft tissues in the mouth. Dental diseases are very opportunistic and are typicallysymptom free until well established. Early signs of disease include bleeding gums on brushing, sensitivity to hot or cold food/ drinks and persistenthalitosis (bad breath). Prevention of these commonly occurring dental diseases is very important for adults and children.

Fortunately, many of the techniques used to prevent dental caries and periodontal diseases are very successful. These include eating a healthydiet and limiting the number of exposures to sugary food and drinks, effective cleaning of all tooth surfaces and use of a fluoride containingtoothpaste. Although many people think that they know how to brush their teeth, it is a sad fact that some adults will lose teeth because of periodontaldisease. It is important that correct oral hygiene techniques are taught to both to children and adults. Younger children need assistance to brushtheir teeth until they can effectively manage on their own and have acquired the habit and appreciate the benefits of regular brushing.

A dentist or one of the dental team is able to give instruction appropriate to the age of the patient and the teeth present in the mouth and will beable to analyse diet and give advice on prevention of dental diseases. It is important to remember that a dentist is only an occasional visitor toyour mouth. The person who really looks after your teeth is yourself, but the dentist is available to give you advice if or when difficulties arise. As theadverse effects of smoking and periodontal health are well documented, the dentist will also be able to give smoking cessation advice and monitororal health.

Even if you have few or no teeth remaining it is important to visit your dentist for an oral screen. This is a check for oral cancers or precancerousconditions. Speedy referral to the appropriate specialist can then be arranged.

It is particularly important that patients who have Sickle cell disease be seen on a regular basis by a dentist. This will hopefully ensure that their oralhealth is maintained and preventive techniques and or treatments are provided. It is thought that a chronic dental infection could precipitate asickle cell crisis, so careful oral health monitoring by a dentist will hopefully reduce the need for any surgical interventions involving the use of generalanaesthetics and conscious sedation techniques where there is a known risk for patients with sickle cell disease.

For those patients, adults or children, who require more complex treatment, beyond that provided by their local dentist, there is a specialist referralservice available, which can be accessed via their local dentist. Individuals with sickle cell disease do not experience an increased risk of thecommon dental diseases and are just as susceptible to them as everyone else, but should have no apprehension about seeing a dentist andobtaining appropriate treatment.

LOOKING AFTER YOUR TEETH: Dental awareness and hygiene in sickle-cell disease

DO YOU KNOW SOMEONE WHO NEEDS OR DESERVES A BRAND NEW GARDEN

ITV1’s hit series “Love Your Garden” starring Britain’s favourite gardener,

Alan Titchmarsh, is back. Last year Alan helped people across the

country whose gardens had suffered as they coped with life’s

challenges, building them a brand new outdoor space.

Now Alan is looking for more deserving people with gardens that

desperately need transforming. They could be an unsung hero or a

tireless fundraiser or a family that is coping with difficult circumstances.

Whatever the story, if you think a garden created by Alan himself could

help them or be a fitting way to say “thank you” then please contact

us with your contact details and a brief description of the person you

are nominating using one of the following methods:

BY PHONE: 020 7065 7072 (pre-recorded message service)

BY POST: Love Your Garden PO BOX 64382 LONDON EC2P 2GJ

BY E MAIL: [email protected]


Fundraising | 23News Review | Sickle Cell Society

FUNDRAISING

British 10K London Run 2012This year’s 10K run was brutal for the 14 runners whotook part on Sunday 8th July due to the rain.However the rain did not stop our committedrunners as they all managed to complete the racein good time. As usual we gathered in a local pubso the runners could dry up, get warm, eat somegrub and have a good banter.

Funnily enough we had four pair of siblings withinthe group of runners who shared their funny storiesof sibling rivalry which was rather entertaining! TheSociety is especially very proud of Amanda Williamswho has sickle cell disease for completing the raceso well done.

The Society would also like to say a special thank you to our Founder and Patron Professor ElizabethAnionwu for taking part in the race for the last 4 years and raising an astonishing £3,306.25 includinggift aid. Elizabeth turned 65 this year and has decided to retire from taking part in 10K runs but has offered to take part in 5K walks every now and then so watch this space.A BIG thank you to all the runners for raising over £3,000 between them which is amazing!

L-R: Maria Fenton, Mukund Patel, NatashaWilliams, Alicene Alcindor, Carl Faucher,Rachel Swaby, Amanda Williams, Ronke

Adetunji, Yinka Osiyemi, Paul Crout,Elizabeth Anionwu and Nina Patel.

L-R: Maria Fenton, Natasha Williams, Carl Faucher,Rachel Swaby, Amanda Williams, Ronke Adetunji,

Yinka Osiyemi and Paul Crout.

L-R – Amanda Williams and Siblings Ronke Adetunjiand Yinka Osiyemi

L-R Siblings Mukund Patel and Nina Patel

Bethany - COGIC Sickle CellSociety Fundraising Gala DinnerBased in Beckenham, Kent, Bethany-COGIC is one of the Assemblies ofthe oldest established Jamaican Church in the UK, which celebrated itsDiamond Jubilee this year, alongside the Queen’s Diamond JubileeCelebrations. They were invited by the Queen to participate in her officialcelebrations and featured on BBC London News.

On Saturday, 29 September 2012, Bethany-COGIC hosted their first-everGala Dinner, in aid of The Sickle Cell Society, at The Britannia InternationalHotel in Canary Wharf, London. Over 100 guests, including actor AntonioOkonma, attended a champagne reception, followed by a sumptuousthree-course meal served in the Royal Lounge. Live entertainment by OneLove Hi-tech was followed by a riveting auction compeered by MCDonovan Grant, interspersed with the announcement of the winners ofthe Grand Prize Draw.

Donations received for the auction and prize draw included a pair ofreturn tickets to New York from Virgin Atlantic Airways; hand-crafted solidsilver Christian Dior logo earrings and a Tiffany-style heart-shaped pendantfrom Living Stones Jewellery, run by the only Black Master Goldsmith inHatton Garden; bumper-sized hampers full of hair care products fromAvon; food hampers from Grace Foods; EDF Energy London Eye tickets;plus many more.

A cheque in excess of £2000 was presented to the Sickle Cell Societyguests of honour, Patrick Ojeer and Imayide Thomas, by host Pastor, HeraldGrant, after a short presentation on the services provided by theorganisation.

Pastor Grant said “The evening was fantastic. It was great to see such agood turnout, everyone looking lovely, relaxed and enjoying themselves.We, the Church in Bethany, were humbled to have raised this gift for sucha worthy and worthwhile cause as The Sickle Cell Society, enabling us tomeet one of the Church’s community goals for 2012.”

Bethany-COGIC would like to thank all those who participated in makingits inaugural event a resounding success and is looking forward to an evenbetter one next year.Mrs Leoter Denis Events Co-CoordinatorC/o Bethany-COGIC

Professor Elizabeth Anionwu


Sickle Cell Society | News Review24 | Fundraising

FUNDRAISING

Hastings Half MarathonLeroy Campbell completed the Hasting Half Marathon on Sunday 25th

March 2012 and raised funds for The Sickle Cell Society. Leroy is a well-

known fitness instructor at Fitness First in Streatham, all his clients and

supporters helped him to raise £2,835. Many thanks Leroy for all your hard

work and sweat!

by Kalpna Patel - Fundraising Manager

Leroy Campbell presenting a cheque to Kalpna Patel

I chose to do a Skydive for the Sickle Cell Society, as this is a cause close

to my heart. A friend of mine suffers from the disease and I wanted to

show my support to him and other people dealing with it. Looking down

from the plane at 10,000ft above the ground I could have easily backed

out, I was beside myself with fear…

Skydiving for a cause close to my heart

Nevertheless, I was inspired by the strength of my friend who deals with

fear and anxiety on a daily basis, and realised I needed to man up!

Although I was practically kicked out of the plane, I did the jump!!! It was

a fantastic experience, for a brilliant organisation, and I am thankful to

those who donated. I managed to exceed my target raising over £550

in sponsorship!

by Helen Ward

Helen Ward Skydive

Hendon Rotary Club’s AfricaThemed Event 10th June 2012

At the start of my presidency at Hendon Rotary Club, I decided that we

should have an Africa Themed event to mark my year and raise funds for

my chosen charity.

My president elect has a son who has sickle cell and he suggested that

in addition to my chosen charity, Safe Haven Children’s Trust, we should

raise funds for the Sickle Cell Society. He was able to get sponsorship from

Barclays bank, which made it possible to stage the Event.

It was a successful evening with traders giving their products freely to raise

money for the causes. Dr. Baba Inusa, who is my niece’s sickle cell

consultant, gave a speech, as did Mr. Ukonu Obasi, who lost two of his

sisters to the disease.

Rotary Club of Hendon is proud to support the Sickle Cell Society and our

incumbent president, Mr. Alex Ayodeji aims to raise awareness amongst

other Rotarians and raise funds this year and in the future.

By Ayo Oyebade

Mr Ayo Oyebade presenting £600.00 cheque to Mr Patrick Ojeer

Royal Bank of Scotland –Focused Women’s NetworkSupports the Sickle Cell SocietyEvery October, we celebrate Black History Month and the contribution that

diversity brings to our society. On Wednesday 24th October, the Royal

Bank of Scotland decided to honour the black community with an

evening reception, which took on a special significance. The organiser

of the event, Heather Melville, knows first-hand the impact of sickle cell

anaemia, as her two young grandchildren are affected by the illness. As

a great supporter of the cause, Heather recognised that that at the

reception with so many attendees from black or ethnic communities

which are affected by the disease that many in the audience would likely

know at least one sickle cell sufferer. On that basis, RBS chose to highlight

the excellent work that the Sickle Cell Society is undertaking and help raise

funds. Over the course of the evening while patrons enjoyed drinks,

entertainment, and networking, they also donated to the cause and


Fundraising | 25News Review | Sickle Cell Society

FUNDRAISING

It costs the Sickle Cell Society approximately £3,600 each quarter to produce this newsletter. If youfound this newsletter informative then please donate now so that we can continue to provide newsright 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 typeNEWL11 £10 and text to 70070. ,

You will then be given the opportunity to add Gift Aid, meaning The Sickle Cell Society could benefitan extra 25%.Your donation will be deducted from your mobile phone credit, or added to yourmonthly phone bill. This service is provided free to us thanks to JusttextGiving by Vodafone. Forfurther information, please visit www.justtextgiving.co.uk.

To reach our target, we need 360 people to donate £10 each, 720 people to donate £5 eachor 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.

Giveonthemobile® is a new mobile app thatenables you to donate to Sickle CellSociety via your smart phone!Simply download the app today to donate tous, find out where your money goes andkeep up to date with our latest events. To download the app for free today followone of the three simple ways:1. Go to your phones app store andsearch giveonthemobile 2. Type gotm.mobi into your mobilephones 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 addedto your monthly phone bill or you can donatethrough Paypal for £15, £25, £50 or abovebut you need a Paypal account. Pleasedownload the Giveonthemobile® app andmake a donation now!

Giveonthemobile®

I

T

JustTextGiving

purchased raffle tickets for the proceeds to go towards the Sickle Cell Society. All had a fun evening, but more importantly, over £700 was raised, as was

everyone’s awareness about the effect the illness can have and how we can help and get involved to make a difference. Both Heather Melville and

Kalpna Patel of the Sickle Cell Society shared touching and personal stories of how their lives have been changed by sickle cell anaemia. RBS was very

proud to lead the effort and work with the Sickle Cell Society to draw attention to the important work they are doing and the many people in the UK who

suffer from this disease.

Volunteer with Kristine Hall Focused Women's Network Co-ordinator selling raffle tickets

Heather Melville, Chair of the Focused Women’s Network presenting

cheque to Kalpna Patel Fundraising Manager.

Cake ‘Guess the Famous Faces Competition’


Sickle Cell Society | News Review26 | Society news and events

The Sickle Cell Society governance team

PRESIDENT & PATRONS

President:

Mr Michael Parker CBE, FCCA

Patrons:

Baroness Floella Benjamin OBE, DL

Professor Elizabeth Anionwu CBE

Mrs Sherlene Rudder MBE

Sir William Doughty

Lord Paul Boateng

Mr Derrick Evans

Mr Trevor Phillips OBE

Mr Lenny Henry CBE

Mr Clive Lloyd OBE

Dr Nola Ishmael OBE

BOARD OF TRUSTEES

Mr Narcisse Kamga Chairperson

Mrs Anne Welsh BSc, MSc Vice Chair)

Mr Babatunde Akintola (Treasurer

Mr Junior Kebbay (Secretary)

Samantha Cumberbatch (Vice Secretary)

Kingsley Ibeke (Vice Treasurer)

Sally-Ann Ephson

Joseph Ezeakunne

Mr Kye Gbangbola

CHIEF EXECUTIVE OFFICER

Mr John James

MEDICAL ADVISORS

Dr Nellie Adjaye

Professor Dame Sally Davies

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 A 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 16 June 2012 - 12 November 2012

Donations of £200 and Over Including External Fundraising............................Amount

Payroll Giving....................................................................................................£19,777.47

Online Giving ...................................................................................................£11,899.78

Bethany Calvery Church of God in Christ - Mrs Leoter Denis..............................£2,015.00

Mr Tony Excell - Ex. Fundraising...........................................................................£1,000.00

Per Pro Prominus Chapter No 5180 - Mr Keith Cuthbertson ...................................£900.00

Zalika Wallace - Tandem Jump ............................................................................£710.00

LCH Clearnet Ltd - Ms Louise Bastien ....................................................................£667.00

Rotary Club of Hendon - Mr Ayo Oyebade...........................................................£600.00

Instinet - Claire Bridges..........................................................................................£594.63

Torridon Infants School - Ms Carol Powell...............................................................£505.00

Cecilia Christou - Ex.Fundraising ...........................................................................£500.00

Ariella Couture - Mr Achilleas Constantinou ..........................................................£500.00

HMP/YOI Stoke Heath - Mr Kal Tamara...................................................................£459.60

Ms Lucreta La Pierre - Ex.Fundraising .....................................................................£453.15

Per Pro Shepherds Bush Road Methodist Church - Mrs Olive Grant .......................£374.96

The Dominica Overseas Nationals Associations - Mr Darren Sylvester ...................£358.70

Mrs O F Brown .......................................................................................................£350.00

Wilkinson Wembley Branch - Miss Myesha Maynard..............................................£334.20

Ms Nina Patel - British 10K London Run Sponsorship ..............................................£300.00

St Thomas's Church Clapton Common - Mrs Margaret Brown ..............................£253.67

Friends of Meadlands - Ms Charlotte McIntyre .....................................................£250.00

The Coutts Charitable Trust - Mrs Pansy Gabriel .....................................................£250.00

Pride of Islington Lodge - Mr Alan Newing .............................................................£250.00

BBC Pointless - Celebrity Charity Donation from Diane Abbott MP ........................£250.00

Endemol UK - Celebrity Charity Donation from Diane Abbott MP .........................£250.00

C O Sule................................................................................................................£250.00

O C Ogbonna ......................................................................................................£250.00

St Margaret's Bushey - C Hooper...........................................................................£228.03

Hawkeye Records - Mr Gerry Anderson.................................................................£225.72

Jobcentreplus - Milton Keynes - Mrs Amina Parkar ................................................£201.85

University of Bradford Union - Mr Jimi Oke .............................................................£201.60

Stoke Newington Seventh Day Adventist Church - Mrs Flo Sutherland...................£200.00

Total ............................................................................................................£45,360.36

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 CellSociety is gratefulto the followingorganisations forproviding restrictedor unrestrictedfunding:

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

Editorial Team Carlotta Olason, Mr Narcisse Kamga, Baba Odeyemi,Iyamide Thomas, Dr. Asa’ah Nkohkwo, Fiona Howe, Elliott Williams, Sally Ann Epson, Andrew Njenga, Morenike Onabanjo

www.sicklecellsociety.orgThe Sickle Cell Society, December, 10th Edition, NRNext plan review date July 2013



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!


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Sickle Cell Society