Sickle Cell Society

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

Issue 10 | Winter 2012

Children’s Holiday Brent Council Project Ade Adebisi Patient Education Seminar

Floella Benjamin receives Action for Children’s arts award Let the story be told: “sickle cell disease a Sierra Leonean Discovery”

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

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Cover_12/11 08/01/2013 09:57 Page 3

Contents Winter 2012 Chairman Message

3

Chief Executive Message

4

•Society News

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

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 Thalassaemia Support Group

14

•Service Providers News NHS SCT Screening Programme

15

Working with NHS Blood and Transplant Service (NHSBT)

16

•Research and Development MP Andrew Gwynne with the speaker at the Patient Educations Seminar

Let the story be told: “sickle cell disease a Sierra Leonean Discovery” Sickle Cell Condition Advocates Ghana

17 18/19

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

20

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 the Sickle Cell Society

The children excited about their participation in the Education Seminar

02 | Contents

24/25

Just giving

25

Sickle Cell Society Governance team

26

Information Quality Statement

26

Donations

27

Sickle Cell Society | News Review

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Message from the New Chairperson 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 fast approaching, and it is an opportune time to renew contacts, celebrate success and make plans for the future. The Sickle Cell Society is highly committed to achieving a healthier, happier and fairer society and to place our organisation at the leading edge of both local and global public health.

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

Mr Narcisse Kamga Chairperson, Sickle Cell Society

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 sickle cell disease and influence polices at the very highest level.

As chairperson I want us to be confident, flexible and an imaginative organisation. I do urge all to contribute to our thinking and embrace our commitments to our stakeholders such as: • Campaigning for the provision of health services best suited to service users comparable to the best available worldwide.

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

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

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

Mr Narcisse Kamga CHAIRPERSON, SICKLE CELL SOCIETY

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Chair’s message | 03

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:14 Page 2

Message from the New CEO At the outset, let me say how pleased I am to have been appointed Chief Executive of the Sickle Cell Society. It is a privilege for me to lead an organisation, which seeks to do the very best for patients with sickle cell across the country.

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

John James, CEO

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

The world around us is also changing with globalisation and changes in demography. For example, 1 in every 500 white British new born in England carries a relevant gene (sickle, thalassaemia, haemoglobins C, D, E). It is vitally important therefore that the Society changes, develops and adapts in order to meet both the economic challenges and the changing demography but also to ensure we are a strong, financially sustainable organisation that remains true to 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 of economic uncertainty, foster a culture of successful delivery on our contracts and grants and strengthen our relationship with stakeholders across the country.

This will allow us to provide better support and advice to sickle cell patients and their families on a sustainable basis.

Ultimately, we must set our sights high for the Society; I genuinely believe that if we work together providing high quality leadership both staff and trustees can create a strategic framework to improve our sustainability working with stakeholders 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

04 | News and Events

Sickle Cell Society | News Review

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SICKLE CELL SOCIETY’S NEWS

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.

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

Outstanding Personality Award winner

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

Dr Shubha Allard MD FRCP FRCPath Consultant Haematologist Barts Health NHS Trust and NHS Blood & Transplant

Black on Black award winner

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

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

Follow SickleCellUK on Twitter Celebrating with Elizabeth on her birthday Anne Welsh and Narcisse Kamga at the AGM

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

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News and Events | 05

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Patient & Carer Education Seminar Addressing psychosocial aspects of sickle cell disorder Over 130 Patients and Carers attended the seminar addressing psychosocial issues affecting individuals with SCD and their families. Psychosocial issues and sickle cell patients in the UK is an area that is not well examined. With the new changes emerging within 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 sickle cell disease are factors such as coping with pain, work, family and social life. Many of these factors were covered during the education seminar. Both patients and carers were able to participate.

The Panel

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

Sia Nyandemo Chief Executive of SCCAN addressing the Panel

Rachel Mcfee Oscar Sandwell Centre Manager and Khudeja Khanom Oscar Sandwell Community Development officer speaking on Social support

The 2nd Patient and Carer seminar on adequacy and safety of Blood supply Following on from our series of Patient and Carer seminars, the 2nd Patient and Carer seminar on adequacy and safety of Blood supply held on Saturday 27th October 2012, in Manchester. The participants were supportive. The seminar was successful with over 132 carers and patients attending. The Lord Mayor Councillor Elaine Boyes of Manchester gave a moving opening speech. Anne Welsh Vice Chair of The Sickle Cell Society shared the society’s views on Blood Safety.

Keeping in line with the Black History Month, Ms Iyamdie Thomas Sickle Cell Society’s Regional Care Adviser , led us through the black history timeline on blood.

Her presentation was followed by Dr Rob Hollingsworth's talk on the National Haemoglobinopathy 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 questioned intensively 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.

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06 | The Society projects

Sickle Cell Society | News Review

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Dr Lorna Williamson, Medical and Rearch Director, NHS Blood and Transplant Speaking to the audience on the Current Transfusion Paractice and Safety.

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,

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

One of the children entertaining the audience

Participants evidently absorbed by the presentations

The children excited about their participation in the Education Seminar

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

CHILDREN’S HOLIDAY AUGUST 2012 Comfort Ndive Regional Care Advisor- London North This year recorded a significant increase in the number of families wanting to send their children to the Society’s Children Holiday. We had 33 Children. The Children Holiday started from the 4th – 11th August 2012, this proved to be yet another fantastic week’s break away from home. With other children living with sickle cell disorder from other parts of the country; to be together, make new friends, enjoy each other’s company; thus enabling their parents/carers to have some time for themselves and a break away from caring.

The Arts and Crafts activity was great fun, the children were able show-case on display their creativeness. The Tie-dye T-Shirts were beautifully designed and all were displayed and prices given to the best ones. There was also glass-painting with breath-taking designs and some magnificent key rings

It was great having our regular but also dedicated volunteers and also some new young ones who gave us their time during this period to support the Society with its children activities. We were privileged to have among us Dr Nellie Adjaye, one of 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 Comfort Ndvie, Comfort Okolo and Hilda Castillo–Binger (both retired Specialist nurse Counsellors) Cont’d next page...

News Review | Sickle Cell Society

The Society projects | 07

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 6

Children’s Holiday continued...

Cont’d from previous page...

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 to step in and have a session with the 11th – 16 years old. They all loved it, Jayson was able to talk about his experience, and he was a role model for them. It was super to have him with us, particularly with the boys, who had an honest educational session with Jayson and Errol who touched on issues such as priapism, changes from a young man to manhood; changes that will happen to their bodies as they grow to become adults(Transition period), very significant for them to know. Then there was the Girls sessions too where we had the 11 – 16years old; the transition period from young girls to ladies; talked about relationships and all girl-talk, including beauty and make-ups

Sia Nyandemo Chief Executive of SCCAN addressing the Panel

The children working together as a team

Enjoying outdoor Play

The children enjoying outdoor activities

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

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

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

Soloman one of our volunteers with the children

The children at chestington theame park

08 | The Society projects

The visits to Chessington and Roald Dahl were enjoyable 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 Story Telling Room with Michael De Souza whose book (Rastamouse) is on the Children TV programme; “this is fabulous “commented one of the children.

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 7

THE BRENT SICKLE CELL PROJECT Are You Affected By SICKLE CELL DISORDER? Do You Live in the Borough of Brent?

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

Kindly funded through a restricted grant by

• Home Visiting

Brent Council

• Mentoring IF YOU NEED SUPPORT OR YOU WISH TO VOLUNTEER Contact: Comfort Ndive, Project Worker Telephone: 020 8961 7795 Email: comfort.ndive@sicklecellsociety.org

News Review | Sickle Cell Society

The Society projects | 09

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Caring for Carers – Everybody go “Spaaaaaaaah”!

Iyamide Thomas – Regional Care Advisor, South London 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 Januar y 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.

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!

The Spa Hotel 'near Gatwick'

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 ver y friendly.

Carers went for their chosen treatments as scheduled or simply relaxed in the spa facilities (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.

Carers relaxing in the Jacuzzi

Time to relax for lunch 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

10 | The Society News

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 9

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 deser ve it- I have to keep reminding myself of thatand return to the 'world' relaxed, recharged, ready for the world!

It was also ver y special to connect with carers at such a relaxing environment. I am certainly going back. Thank you Iyamide and Comfort! 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 total but the day was so much more than pampering. The peer support was overwhelming and a treatment within itself. Such days should be on the NHS as they are vital! I can’t believe I found such fellowship/ friendship with people I had only met that morning”.

Carer 3 “It was great meeting other carers who understand what it is like to look after a child with sickle cell. Spending so much time in and out of hospital with my child, I was in need of relaxation - the Sickle Cell Society came to the rescue! Meeting other inspiring ladies and knowing you are not alone was just as relaxing as the treatments - thank you SCS! I came back rejuvenated, well informed and truly inspired”.

Carer 4 “I will thank you for the wonderful care you and Comfort give. It takes ver y special people like you to look after others with such kindness and concern. I want you to know . . . you are appreciated! Sometimes a family needs that extra special touch that only people who really care can give. I found that in each of you who helped. It lifted our burden and lightened our load.

It provided a comfortable solution in a tr ying time. I do thank you so ver y 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 were out and about attending events to raise awareness of sickle cell. Here goes!

L-R: Hellen Adom, Outreach Assistant and Iyamide Thomas at the Windrush Nurses and Beyond Foundation 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 Police Constable and founder member of the Black Police Association holding a Screening Programme Bag

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News Review | Sickle Cell Society

The Society News | 11

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Black History Month 2012 continued...

Raising awareness at Lewisham Shopping Centre

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

Men at Lewisham Centre displaying the NHS Sickle Cell and Thalassaemia Screening Programme's 'Test for Dads' leaflet

SERVICE USER NEWS

Ade Adebisi Professional rugby league is widely acknowledged as one of the toughest team sports in the world. It’s hard on players in peak physical condition but for someone with a potentially life-threatening blood disorder it would appear to be completely out of the question.

Catch me if you can!

Sickle Cell Society & Krio Descendants Union awareness event as part of Southwark's Black History Month Programme

Try telling that to London Skolars wing Ade Adebisi.

The 26-year-old Londoner suffers from sickle cell disease, a genetic blood disorder that can cause bouts of chronic pain which often lands the sufferer in hospital. Youngsters with the disease were advised to avoid any kind of physical exertion and often their education suffered because of absences from school which led to poor career prospects. But Ade has turned all that thinking on its head by not only playing rugby league at the highest level but also forging a career for himself 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 and strength, 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 and during 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 coming out 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 Haematology rang 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 has always 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 condition playing such a physically demanding sport. Kalpna Patel, Fundraising Manager for the Society, said: “I’m really impressed that Ade is playing such a tough sport at 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. He should 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. In England, 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 time and 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 suitable donor. 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 your body. The pain can happen anytime anywhere and be in your arms, legs, back or chest. It can last hours, or days or even weeks.”

12 | Support Group News/Service User News

Sickle Cell Society | News Review

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Ade has always had the condition but it didn’t really manifest itself until it started affecting him playing sport at school. “I had my first incident playing five a side football. I kicked the ball really hard and it began to hurt. I didn’t know what it was but it was constant pain. I went to hospital and was there for two days.” Born and brought up in east London he attended Forest Gate Community School where the sports were football and athletics. A talented footballer he knew little of rugby until a PE teacher from Bradford, Andy Hurst, suggested he try rugby league 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 represent the South at rugby league instead. He was soon spotted by the London Broncos and played for them at under16s and under-17s level. Because the Broncos didn’t have an under-21s side he, along with other rising young stars Louie McCarthy-Scarsbrook, Mike Worrincy and Ian Lane, spent a season at Hull FC. Being at Super League clubs meant training went up several notches in intensity as he got older. It’s tough for any young athlete let alone one with sickle cell disease but Ade was determined not to let it affect his career. In fact he believes that rugby league has helped him to cope with the condition. “I had never done anything as intense as when I started playing rugby league,” he said. “Rugby league is all about being mentally strong as well as physically strong and that has undoubtedly helped me to deal with the condition.

“And he scores again “

“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 and that 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 lazy but 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, did understand 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 I just 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 same amount 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 with sickle 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 cell disease 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 Rugby League? “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 he was 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 living with 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 a result 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 Leeds Rhinos 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, who were 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 after seven 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 by Featherstone 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 try scorer. 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 old club, 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-testing policy 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 single thing 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”. Because the 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 a few 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 has made 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 Morgan became 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 he now 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 hospital but 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. Anything I 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 and adults 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 to hospitals 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 pain killers. 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 and fundraising. “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 to understand 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. But sickle 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 it as 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”.

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SUPPORT GROUP NEWS

A Sickle Cell Society Workshop for Carers

By 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 the 9th 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 mayor of 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. Speeches were 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 the day with us. We remain committed and will continue to raise the awareness for Sickle Cell and Thalassaemia and support members and families”.

Barking & Dagenham and Havering Sickle Cell and Thalassaemia Support Group celebrates its 10th Anniversary 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.

Cross-section of audience at even

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.

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SERVICE PROVIDER NEWS

NHS SCT Screening Programme News 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

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 All babies Black African Black Caribbean White

Rate 1 in 70 1 in 7 1 in 8 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 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

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.

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

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; further notes the employment issues facing patients living with sickle cell disease, including the link between education and employment, the importance of employer flexibility and the lack of Government attention on these issues, which falls between the remits of health and employment agencies; further notes the comparative lack of research into haemoglobinopathies compared to other disease areas; urges the Government to support greater research into haemoglobinopathies; further notes the importance of effective transition care for patients moving from paediatric to adult services; and calls on the Government to continue to support the work of the voluntary sector in improving awareness of sickle cell disease within the communities affected in 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 signatures is an encouragingly high number of signatures for an Early Day Motion and it is confirmation of the on-going support in Parliament for this important cause.

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 Cont’d next page...

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SERVICE PROVIDER NEWS

APPG continued... 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 the patient’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, particularly around the apparent lack of specialist transition nurses working in this disease area. Why, given the relatively high prevalence of sickle cell disease compared 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 to meet with the Minister for Public Health to bring this issue directly to the Government’s attention. This meeting, originally scheduled for September, was unfortunately cancelled due to the Government reshuffle in which Anne Milton MP was replaced by Anna Soubry MP. The APPG welcomes Ms Soubry to her 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 new Minister 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 basic science, 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 its programme 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 in this. 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 Abbott about 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 cell disease 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 Cell Society.

Working with NHS Blood and Transplant Service (NHSBT) Donor Appeal 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 of the 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 Olympic Games. 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 anticipated demand can be met. Active donors in particular, including 120,000 in the capital itself, were asked to donate blood if they were eligible between before the 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 the treatment of her sickle cell beta thalassaemia, appeared holding hands with a body painted blood donor to raise awareness of the need for existing and new donors to give blood

Donor Models with Blood Recipients

16 | Service Provider News

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

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SERVICE PROVIDER NEWS

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 innovative way that was used to raise awareness of sickle cell disease whilst also combining an aspect of ‘Black History’. On 15 June 2012 an event billed ‘Let the Story be Told: Sickle Cell Disease – a Sierra Leonean Discovery’ was held in the London Borough of Southwark and was a collaboration between the Sickle Cell Society and the Krio Descendants Union (London). A UK first, this event raised awareness of sickle cell disease and innovatively combined aspects of Krio history and heritage of the Krio individual who first wrote about the condition long before its Western ‘discovery’ by James Herrick in 1910!

Edinburgh University Plaque recognising Africanus Horton as their first African graduate

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 he looked 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 Sierra Leone (of Igbo parentage) gave the first written account of the disease that Herrick subsequently called ‘sickle cell anaemia’. In his book ‘The Diseases of Tropical Climates and Their Treatment’ published in 1874, Africanus Horton described various features of an inherited disease, including persistent abnormality 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 been microscopes during his time, I believe that the story should be told and this Sierra Leonean born and educated Krio surgeon, scientist, soldier and political thinker who worked towards African independence a century before it occurred, should be seen as the true ‘discoverer’ of sickle cell disease! (Of course, I must 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 African and 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 yet another innovative setting I thought of. Around 80 people packed into the crypt at, St Peters in Liverpool Grove, a popular Sierra Leonean Friday evening meeting place for this special event. Sierra Leonean historian Dorinda Harding (dressed in typical Krio attire of ‘Print’ and ‘carpet slippers’) gave a short history of the ‘Krios’ the descendants of freed slaves - from Britain (the ‘Black Poor’), from America (the ‘ Nova Scotians’ ), from Jamaica (the ‘Maroons’) and slaves that were recaptured at sea ( the ‘Recaptives’ or ‘Liberated Africans’) – who were all resettled in Freetown, Sierra Leone.

Cross-section of audience

Krios like Africanus Horton went on to become some of Africa’s first doctors, lawyers and administrators. Yes as early as the 1800’s Africans were excelling and getting degrees from UK universities! This short history lesson was followed by Madonna Johnson who spoke of her ancestor Thomas Peters, the freed slave who together with British abolitionists such as Granville Sharp and William Wilberforce advocated for the resettlement in Sierra Leone. In December 2011, a statue was erected 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 by now! If you have not yet seen it, visit www.familylegacy.org.uk. Nigerian film producer Obi Emelonye (‘Mirror Boy’, ‘Last Flight to Abuja’) was at the event and gave an interesting and amusing account of his experience when tested for the sickle cell gene after the birth of his child. The reaction to the Family Legacy from the mainly Sierra Leonean audience is one of the best I have witnessed. They laughed where there was humor, empathized where there was pain and rebuked where there was denial!

Dorinda Harding recites the history of the Krios

A very interesting discussion followed with a panel that included two sickle cell nurse specialists showing that people had been usefully educated whilst being entertained.

The entertainment did not stop there; there then followed a performance of actress Iyamide Thomas introduces Adebisi Aluko Anni 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 then thrilled 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 departed there 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 as part of Southwark Council’s official Black History Month 2012 programme. This event took place on 12 October and was billed “The Krios of Sierra Leone celebrating 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!.

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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 the event, among the guests of Floella, including TV presenter Sarah Greene and actor Rudolf Walker of the BBC’s Eastenders fame!

The Action for Children’s Arts J.M.Barrie Award is given annually to a children’s arts practitioner or organisation whose work, in the view of ACA, will stand the test of time.

2005 2006 2007 2008 2009 2010 2011 2012

Dick King-Smith Judith Kerr Oliver Postgate and Peter Firmin Quentin Blake Roger McGough Shirley Hughes Lyndie Wright Baroness Floella Benjamin

TV presenter Sarah Greene and Floella Benjamin.

SICKLE CELL CONDITION ADVOCATES (SICCA) IN GHANA, WEST AFRICA Sickle Cell Condition Advocates (SICCA), is a registered non-governmental organization in Ghana, West Africa. SICCA is involved in several activities which aim at educating, counselling, and raising awareness of the sickle cell condition. SICCA is looking at the challenges across all aspects of the sickle cell condition; 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 as a 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 Regional Health 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 and counselling was community- based health education, mass media and public events supported health education using public drive such as; radio discussion programmes, talk shows, community Town Hall meetings and information van community announcements. Flyers, posters and billboards were also 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.

Cont’d next page...

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With the approval of school authorities, students helped to organise Blood Donation and Eye Screening Exercises in all three regions. This was a form of creating awareness and making the people in the community realise the importance of stocking up the blood banks in the hospitals so that when sickle cell patients needed blood, they could always be assisted. Eye screening was 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 and laboratory technicians from the three regions. This was strategically planned to get a cross section of health professionals in both public and private hospitals and clinics in the northern part of Ghana well informed of the standards for clinical care and management of people with sickle cell condition. They were to pass on what they learnt to others in their own care protocols for sickle cell patients.

SICCA, through the wonderful cooperation and help we had from all stake holders in all the three 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 Hospitals Charlotte Owusu addresses schoolchildren on sickle cell at the end of the period of our stay. The team also facilitated the organization of Sickle Cell Support Groups made up of patients, parents and supporters. With the help of the volunteers these 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 of Ghana as well as other parts of the world where sickle cell poses a challenge and with the adoption of recommendations SICCA made, there is genuine prospect of greater worldwide change on the horizon. There were three recommendations: 1.

2.

3.

Structured training programmes for health professionals on latest care protocols on sickle cell condition.

An organized “Know Your Sickle Cell Status” campaign at all educational levels right from basic school.

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 project since 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 Government of 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 recognize sickle 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 the care 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 for more 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 extended to 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 improve available Sickle treatment services. Without the information that the NHR is capable of providing, such as patient numbers, locations, therapy etc. this will become increasingly difficult when compared with other clinical services that are readily able to provide such information. This really highlights the importance of ensuring that 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 key clinicians for events such as deaths, strokes, and ITU admissions. This provides a national oversight function to review and if possible improve treatment to reduce the 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 that all 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 data is 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 of years 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. To register 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 without giving your consent.

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

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

By Sally Cavanagh & Asa’ah Nkohkwo - Correspondence to: Dr Asa’ah Nkohkwo, Sickle Cell Society, 54 Station Road, London, NW10 4UA. Email: asaah.nkohkwo@sicklecellsociety.org

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

Identifying the need • Average life expectancy for someone living with SCD is in the region of 5060 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 selfmanagement 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 200910.6 • 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.

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 selfmanagement 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 Commissioning Paradigm: as an essential element of an integrated care Community Hub (Fig-1)

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 selfefficacy 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-

20 | Research & Development

Fig-1 The Model Community Hub Functionality: a patient-centred community-focused approach to enable integration across the sickle and thal care pathway, enhance service user satisfaction and decrease hospitalisation. (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 which shows that there is a great deal of variability in the respect, understanding and compassion which health and social care professionals give people living with SCD who need their care. Add this to the cultural imbalance that is currently widely inherent in the doctor-patient relationship and that, on the whole, clinicians do not understand self-management, or how to actively support their patients in this; and an important missing piece of the jigsaw is identified. To make all patient-focussed SCD condition-specific selfmanagement initiatives truly effective, creation of a programme which addresses clinicians learning and development needs in this area is also essential.

References (available from the Society)

Sickle Cell Society | News Review

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

Readers of Sickle Cell News Review will recall a number of articles over the last couple of years alerting us to impending changes in the NHS towards an era of Commissioning (ref SCS News Review Summer 2012). In particular, the last 7 months have seen intensified developments within the framework of “ minimum take” in preparation for budgeted commissioning to take effect from April 2013. Such is the magnitude of the impending changes that it would be necessar y to revisit the topic. In this article, Dr Asa’ah Nkohkwo (previously chief executive of the Society) updates, as promised, where the Society stands on the developments.

Suffice to confirm that sickle-cell disease has been designated as a specialist condition (SSNDS No 38, www.specialisedservices.nhs.uk/info/speci alised-ser vices) in the new NHS arrangement. While this commendably mainstreams our cause, the inherent risk of the specialist definition must be highlighted upfront and yet again. In summar y, we must ALL be on the look-out locally and nationwide, that a wider determinant approach is adopted, including non-medical yet vital complementar y services which are quite often needed by service users, (as shown on Table-2) especially when they will be out of the hospital system (the focus of specialised commissioning).

With a couple of screen shots from his nationwide itinerar y, Dr Nkohkwo highlights the main issues, finishing off with not only how the Society has been vigorously engaging the stakeholders, but a call-out that we all get involved with emerging scrutiny arrangements such as Healthwatch, Health Boards/ Senates and of course our ver y own All-Party Parliamentar y Group.

NICE= National Institute for Health & Clinical Excellence, will have an enhanced role, building on its previous work to ensure that treatment guidelines

News Review | Sickle Cell Society

are developed and standardised, while new technologies will also be scrutinised for suitability for the NHS use.

CQC = the inspectors of treatment centres Healthwatch = health watchdogs... just that !

Monitor = will ensure fair competition among the providers of healthcare.

Commissioning = in essence a cyclical process whereby health needs will be assessed and met, with expected involvement of the service users, so as to ensure that the ser vice will be as responsive as possible to the needs of the users.

Table-2 depicts the annual workload of a typical Support Care Officer of the Sickle Cell Society in London, provided by the Sickle Cell Society. One officer would ideally serve a catchment of 500 service users. In addition, the picture we found across the countr y during the Comprehensive Care project itinerar y (2009-2012) the message could not be clearer- non-medical issues are ver y important too, and ought to be included in commissioning arrangements. Indeed, this was confirmed by the DH’s ver y own findings as previously reported. The effective solution for quality care under the new arrangement, we believe, will be comprehensive & integrated care,

preferably involving a “Community Hub” focus.

A strategy paper was therefore submitted in Februar y to government- DH & NHS Commissioning Board Authority- and Parliament. The lobby for responsive integrated care (including a Community Hub) has intensified during 2012 with progress as outlined on Table-3.

Baroness Benjamin chaired a meeting at the House of Lords on 9 October. The meeting had been arranged by Earl Howe (DH Minister for Quality) who wanted the DH Commissioning Team to meet with the Society to discuss arrangements concerning Comprehensive Care for sickle-cell disease during the era of commissioning. Baroness Benjamin is continuing with engagements that resulted from the ver y promising discussions.

Meanwhile, we ask that ever yone remains alert. Indeed, we ask that wherever you are, you get involved with your local arrangements for scrutinizing healthcare in the future, to ensure a responsive integrated care arrangement in your area. Hence, we would like to finish off with a reminder of the key role that the government ’s HealthWatch will be playing. So, please do get involved with your local Healthwatch. If in any doubt as to how, please do not hesitate to contact the Society

Research & Development | 21

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LOOKING AFTER YOUR TEETH: Dental awareness and hygiene in sickle-cell disease Dr Margaret Wilson Consultant 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 is true 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) are caused by bacteria living in bio-films (dental plaque) on teeth and soft tissues in the mouth. Dental diseases are very opportunistic and are typically symptom free until well established. Early signs of disease include bleeding gums on brushing, sensitivity to hot or cold food/ drinks and persistent halitosis (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 healthy diet and limiting the number of exposures to sugary food and drinks, effective cleaning of all tooth surfaces and use of a fluoride containing toothpaste. 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 periodontal disease. It is important that correct oral hygiene techniques are taught to both to children and adults. Younger children need assistance to brush their 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 be able to analyse diet and give advice on prevention of dental diseases. It is important to remember that a dentist is only an occasional visitor to your 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 the adverse effects of smoking and periodontal health are well documented, the dentist will also be able to give smoking cessation advice and monitor oral 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 precancerous conditions. 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 oral health is maintained and preventive techniques and or treatments are provided. It is thought that a chronic dental infection could precipitate a sickle cell crisis, so careful oral health monitoring by a dentist will hopefully reduce the need for any surgical interventions involving the use of general anaesthetics 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 referral service available, which can be accessed via their local dentist. Individuals with sickle cell disease do not experience an increased risk of the common dental diseases and are just as susceptible to them as everyone else, but should have no apprehension about seeing a dentist and obtaining appropriate treatment.

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:

BY POST:

BY E MAIL:

020 7065 7072 (pre-recorded message service) Love Your Garden PO BOX 64382 LONDON EC2P 2GJ Teamhort@spungoldtv.com

22 | Research & Development

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 21

FUNDRAISING

British 10K London Run 2012 This year’s 10K run was brutal for the 14 runners who took part on Sunday 8th July due to the rain.

However the rain did not stop our committed runners as they all managed to complete the race in good time. As usual we gathered in a local pub so the runners could dry up, get warm, eat some grub and have a good banter.

Professor Elizabeth Anionwu

Funnily enough we had four pair of siblings within the group of runners who shared their funny stories of sibling rivalry which was rather entertaining! The Society is especially very proud of Amanda Williams who has sickle cell disease for completing the race so well done.

The Society would also like to say a special thank you to our Founder and Patron Professor Elizabeth Anionwu for taking part in the race for the last 4 years and raising an astonishing £3,306.25 including gift 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, Natasha Williams, Carl Faucher, Rachel Swaby, Amanda Williams, Ronke Adetunji, Yinka Osiyemi and Paul Crout.

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

L-R: Maria Fenton, Mukund Patel, Natasha Williams, Alicene Alcindor, Carl Faucher, Rachel Swaby, Amanda Williams, Ronke Adetunji, Yinka Osiyemi, Paul Crout, Elizabeth Anionwu and Nina Patel.

L-R Siblings Mukund Patel and Nina Patel

Bethany - COGIC Sickle Cell Society Fundraising Gala Dinner Based in Beckenham, Kent, Bethany-COGIC is one of the Assemblies of the oldest established Jamaican Church in the UK, which celebrated its Diamond Jubilee this year, alongside the Queen’s Diamond Jubilee Celebrations. They were invited by the Queen to participate in her official celebrations and featured on BBC London News.

On Saturday, 29 September 2012, Bethany-COGIC hosted their first-ever Gala Dinner, in aid of The Sickle Cell Society, at The Britannia International Hotel in Canary Wharf, London. Over 100 guests, including actor Antonio Okonma, attended a champagne reception, followed by a sumptuous three-course meal served in the Royal Lounge. Live entertainment by One Love Hi-tech was followed by a riveting auction compeered by MC Donovan Grant, interspersed with the announcement of the winners of the Grand Prize Draw.

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

News Review | Sickle Cell Society

A cheque in excess of £2000 was presented to the Sickle Cell Society guests of honour, Patrick Ojeer and Imayide Thomas, by host Pastor, Herald Grant, after a short presentation on the services provided by the organisation.

Pastor Grant said “The evening was fantastic. It was great to see such a good turnout, everyone looking lovely, relaxed and enjoying themselves.

We, the Church in Bethany, were humbled to have raised this gift for such a worthy and worthwhile cause as The Sickle Cell Society, enabling us to meet one of the Church’s community goals for 2012.”

Bethany-COGIC would like to thank all those who participated in making its inaugural event a resounding success and is looking forward to an even better one next year.

Mrs Leoter Denis Events Co-Coordinator C/o Bethany-COGIC

Fundraising | 23

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 22

FUNDRAISING

Hastings Half Marathon Leroy Campbell completed the Hasting Half Marathon on Sunday 25th March 2012 and raised funds for The Sickle Cell Society. Leroy is a wellknown 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

Hendon Rotary Club’s Africa Themed 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

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

24 | Fundraising

Mr Ayo Oyebade presenting £600.00 cheque to Mr Patrick Ojeer

Royal Bank of Scotland – Focused Women’s Network Supports the Sickle Cell Society Every 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

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 23

FUNDRAISING 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.

Heather Melville, Chair of the Focused Women’s Network presenting cheque to Kalpna Patel Fundraising Manager.

Cake ‘Guess the Famous Faces Competition’

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

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

To download the app for free today follow one of the three simple ways: 1. Go to your phones app store and search giveonthemobile 2. Type gotm.mobi into your mobile phones web browser 3. Scan the QR code below

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

JustTextGiving It costs the Sickle Cell Society approximately £3,600 each quarter to produce this newsletter. If you found this newsletter informative then please donate now so that we can continue to provide news right to your doorstep.

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

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

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

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

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

Fundraising | 25

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Pages_12/11 17/12/2012 15:15 Page 24

The Sickle Cell Society governance team PRESIDENT & PATRONS

BOARD OF TRUSTEES

MEDICAL ADVISORS

President: Mr Michael Parker CBE, FCCA

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

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

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

SCIENTIFIC ADVISORS CHIEF EXECUTIVE OFFICER Mr John James

Dr Mary Petrou Professor Simon Dyson Dr Kofi A Anie

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

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

The Sickle Cell News Review is an open forum to individuals and interested groups and organisations. Therefore opinions and ideas expressed by authors are not necessarily those of the Sickle Cell Society. However, all patent information relating to health and social care in the news review has been produced in accordance with the requirements of the information standard to which the Sickle cell Society is accredited.

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

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

26 | Society news and events

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

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

Sickle Cell Society | News Review

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Cover_12/11 08/01/2013 09:57 Page 4

The Sickle Cell Society is grateful to the following organisations for providing restricted or unrestricted funding:

Donations Donation £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

Novartis Pharmaceuticals UK Ltd

LCH Clearnet Ltd - Ms Louise Bastien ....................................................................£667.00 Rotary Club of Hendon - Mr Ayo Oyebade...........................................................£600.00

Department of Health London Councils

Instinet - Claire Bridges ..........................................................................................£594.63 Torridon Infants School - Ms Carol Powell...............................................................£505.00 Cecilia Christou - Ex.Fundraising ...........................................................................£500.00

Roald Dahl’s Marvellous Children’s Charity

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

TerumoBCT

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

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

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 note we have only mentioned donations of £200 and over as space would not permit us to mention every donation.

News Review | Sickle Cell Society

Sponsors and Donations | 27

SICKLE_CELL_SOCIETY Newsletter DECEMBER 2012_Cover_12/11 08/01/2013 09:57 Page 1

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

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

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

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

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

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

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

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

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

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Please send your comments to info@sicklecellsociety.org

Editorial Team Carlotta Olason,

Registered Charity No. 1046631 Company No. 2840865

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

www.sicklecellsociety.org The Sickle Cell Society, December, 10th Edition, NR Next plan review date July 2013