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

Issue 8 | Winter 2011

Children’s Holiday

Rest in Peace Sickle Cell

“Listen Up!”Commissioning is on the way

Screening Programme Update

SICKLE_CELL_SOCIETY_Cover_12/11 14/12/2011 08:09 Page 2

ContentsWinter 2011 Chairperson’s Message 03

CEO’s Message 04

Comprehensive care for people living

with sickle cell disease in England 05

Children’s Holiday 07

Children’s visit to the Horniman Museum 09

• Society News

Awards and Acknowledgements 10

Upcoming Event 12

• Service Users News

Rest in Peace Sickle Cell 13

Wow!!! BEFFTA Award for Best TV Actress 13

• Support Group News

Scottish Sickle Cell and Thalassaemia Support Group 14

• Service Providers News

Screening Programme Update 15

NHS blood and Transplant 16

Help Raise Awareness in Parliament! 17

APPG Update 18

• Fundraising

Land’s End to John O’Groat’s 20

Run for us in 2012 21

Children’s Holiday

APPG UPDATE

Children’s visit to the Horniman Museum

Sickle Cell Society | News Review02 | Contents

SICKLE_CELL_SOCIETY_Cover_12/11 14/12/2011 08:09 Page 3

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

Year end is always a natural point on the

calendar to spend time to reflect on the many

events and positive outcomes the Society has

experienced during the year.

I hope you will take the time to read the great

work being done and give due consideration to

how everyone of us can be of better service to

those suffering from Sickle Cell in the New Year.

2011 in particular has been a year the Society

has had to prioritise building its sustainability for

the future. The pressures of reduced revenues

coming into the Society from government

funding and donations continue to be of grave

concern. This difficult economic environment

puts tremendous pressure not only on the staff

of the Society but also results in decreased

capacity to look after those individuals that

need support the most in our community.

With this climate the Society has been

operating in and with the forecast likely to

remain similar in the coming years, the issues

I will highlight show the commitment by the

Board and staff to do everything we can to be

a force for good in the sickle cell community

in the future.

I would like to begin this newsletter by

recognising the Board of Trustees for their

commitment to working as a team in tackling

the challenges the Society is facing. Great

organisations require that the Board be able to

inspire and at the same time make difficult

decisions. Over the year, I believe we have

come a long way to getting that balance right.

The All Party Parliamentary Group (APPG) is a

critical organisation that represents the Sickle

Cell Society in parliament. The All Party

Parliamentary Group (APPG) on Sickle Cell and

Thalassaemia reception at Portcullis House on

21st of June 2011 was held to mark the 10th

anniversary of the NHS Sickle Cell and

Thalassaemia Screening Programme. This was

a splendid event that many of our Patrons and

supporters attended. Celebrating this

anniversary shows the ongoing commitment to

the sickle cell cause by Parliamentarians. The

event was sponsored by Diane Abbott MP,

Shadow Minister for Public Health with the guests

enjoying inspiring and congratulatory speeches

from Mr Trevor Philips OBE, Chair of the Equality

and Human Rights Commission and patron of

the Society, Mr Gabriel Theophanous, President

of the UK Thalassaemia Society, and I, Chair

of the Sickle Cell Society. The Screening

Programme’s Director Dr Allison Streetly was also

congratulated on her success in taking

leadership so effectively of the programme and

also her OBE award for services to healthcare.

Celebrities including JB from popular boy band

“JLS” and comedian Lenny Henry, patron of the

Society, also supported the event.

There was a large response to the government’s

consultation process with the APPG dealing with

employment issues of patients with sickle cell

and Thalassaemia. Promoting research into

haemoglobinopathies and a discussion on

smoothing the transition from paediatric to

adult care in haemoglobinopathies due for

completion in the summer of 2012.

During 2011 The National Quality Board, NICE

has been asking for input from health

professionals, providers and the public about

clinical areas for adoption of NICE’s new

quality standards. These describe best,

evidence-based practice for ‘high quality, cost

effective care’ where the categories of

standards include sickle cell crisis, transfusion

and pain management for both young

people and adults.

These Quality Standards are to be part of the

measures that the NHS will be measured against

in the future. With these standards in place

patient groups such as the Sickle Cell Society

can work to improve services in these areas.

Fulfilling our mission to eliminate the inequities

faced by our patients who are unwell or

physically impaired depends on renewing

existing partnerships and forging new

collaborations including working with NICE to

address the need to improve quality of care for

people from ethnic minority backgrounds.

In addition the Society is working together with

the NIHR CLAHRC for Northwest London and

Imperial College London to help improve

Patient’s visit to their GPs. This will be based on

a survey designed on the quality requirements

set out by the UK Forum for Haemoglobin

Anne Welsh BA, MSc Chairperson, Sickle Cell Society

Message from theChairperson

Disorders which will help to understand the

current NHS care patients have received.

The Society’s objective is to support people with

Sickle Cell and improve their quality of life.

During the second half of the year our new and

improved website was launched. This website

was built ensuring the latest information is

available to patients and their families.

Year on year we continue to support the

newborn outcomes project. As well as helping

us to demonstrate the effectiveness of the

screening programme and ensuring that all

babies identified as having sickle cell receive

treatment and care promptly and stay healthy,

the project will also help us audit how well the

antenatal programme identifies couples at risk

and whether mothers are offered timely

screening in pregnancy.

The examples I have described are just

highlights from a long list of critical projects that

have been championed by the Society this

year. My heartfelt thanks goes to all the staff,

the Board of Trustees, stakeholders and partners

who have continued to offer their support to

the Society in these challenging times.

In the New Year the Society will continue to

attend events that will increase the

awareness of individuals, potential donors

and Parliamentarians to sickle cell disease.

I wish everyone the very best in the New Year.

Anne WelshCHAIRPERSON, SICKLE CELL SOCIETY

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 1

Sickle Cell Society | News Review04 | CEO’s message

The year 2011 draws to a close and we look

back into the year with thankfulness for the

Society’s achievements and successes and

this high spirit will provide the ammunition to

lead us into the new year with hopes for a

much better future for those affected by

sickle cell disease.

The year 2011 draws to a close and we look

back into the year with thankfulness for the

Society’s achievements and successes and this

high spirit will provide the ammunition to lead us

into the new year with hopes for a much better

future for those affected by sickle cell disease.

It has indeed been a difficult year and the Society

is uncertain of the impact of the government’s

NHS reforms on our future service delivery.

However, we are aware we have to tighten our

belt to survive in this adverse economic climate.

Funding applications to continue our core

projects have not been successful and we

continue in our efforts to source for new funds.

Unfortunately, the pilot befriending and mentoring

service came to a close due to end of grant. The

project was very successful and the Society

hopes to continue the service once additional

funding has been secured.

The Regional Care and Comprehensive Care

projects have covered more areas in the

country with very encouraging outcomes. The

Society played a leading role in the

government’s consultation exercises on the

NHS reforms, was engaged in the NICE

consultations as well as others. The Society has

Dr Philip Nortey CChem, CSci, FRSAChief Executive, Sickle Cell Society

Chief Executive’smessage

“...I am optimisticthat next year

will bring moreopportunities...”

continued to work effectively with the NHS Sickle

Cell and Thalassaemia Screening Programme.

I am pleased to inform you that The Society

launched its new website earlier this year, which

contains many new features. Therefore, please

do visit our website www.sicklecellsociety.org for

regular updates, ways to get involved or to

make a donation online.

The Society continues to work in collaboration

with a number of organisations across the

charity sector and the government to raise

awareness and to ensure patients are at the

heart of service delivery in order to improve the

quality of life for patients.

The Health Information Officer and I represented

the Society at the European Haematology

Association (EHA) seminar at the European

Parliament in Brussels in August of this year. The

topic of the seminar was ‘Haematology and the

next European Decade’. Delegates were from

all the 27 Euro states including a number of Euro

parliamentarians (MEPs). There was discussion

on the future of haematology clinical research

/ trials, harmonisation of medical training,

medical regulatory directive, views from industry

and academic institutions. The seminar aimed

to advise and influence policy makers on Euro

directives on haematology and it also provided

a platform for international networking.

I am optimistic that next year will bring more

opportunities to enable the Society to continue

with the work it was set up to deliver.

On behalf of The Society I thank you for your kind

donations and am grateful for all your

contributions in whatever capacity you were able

to support our cause to improve health and

support for those affected by sickle cell disease.

On behalf of the Society, may I wish you and

your family a very peaceful Christmas and a

Happy New Year.

Dr Philip Nortey FRSACHIEF EXECUTIVE OFFICER, SICKLE CELL SOCIETY

From left 1st Dr Philip Nortey, 4th Mrs

Carlotta Olason, Health Information

Officer Sickle Cell Society, 5th Dr Androulla

Eleftherio, Executive Director of

Thalassaemia International confederation,

6th Mr Orin Lewis, Co-Founder and CEO

of African Caribbean Trust. With other

delegates at the European Association of

Haematology seminar at the European

Parliament in Brussels.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 2

The Society projects | 05News Review | Sickle Cell Society

BACKGROUND:

Under Section 64 of the UK NHS & Public Health

Act 1968, the Sickle Cell Society, entered into a

formal collaboration , in 2009, with the

Department of Health’s 3rd Sector Innovation,

Excellence & Service Development Programme.

Through this arrangement, Dr Nkohkwo,

previously chief executive of the Society, was

mandated to visit providers and other

stakeholders around England and look into the

provision of services for improving health in

people with sickle cell disease. The driving

objectives, (ref. Sickle Cell News Review,

Summer 2010), include: instigating, catalysing,

promoting/ disseminating sustainable initiatives

for improving healthcare for people living in

England with sickle cell disease, (SCD),

through advocacy, lobbying, strategic peer-

collaborations, strategic partnerships, supporting,

orchestrating. Most especially, by persuading

service providers, commissioners, policy

makers and other stakeholders to adopt an

ethos of engaging the wider determinants of

health, especially involving the service users in

the planning, it is hoped that the eventual

healthcare delivery arrangement would be

more comprehensive, effective and, above-

all, user-responsive.

This project update reports on the challenges

to position Comprehensive Care for sickle cell

disease at the heart of the new Coalition

Government’s healthcare agenda. Of key

importance is that everyone has the duty to

engage with the developments to ensure that

Access, Integration and Continuity remain

core values while the reforms seek to deliver

Productivity, Quality and Choice under an over-

arching NHS Commissioning Board.

NHS COMMISSIONING IS HERE!

Shortly after taking over last year, the new

government announced its key reforms paper:

Liberating the NHS. At the heart of the reforms

will be a new special health authority (the NHS

Commissioning Board) to oversee the

deployment of an annual budget estimated in

excess of 80 billion. While the Health & Social

Care Bill makes its way through Parliament, a lot

of preparatory changes are already

happening: the new Board in question was

announced on 31 October 2011. Run from

Quarry House in Leeds, the board will be

chaired by Professor Malcolm Grant, with Sir

David Nicholson as chief executive. The Sickle

Cell Society is represented on the steering

group (of the public and patient engagement

work stream) advising the transition on aspects

of care for specialised conditions.

We followed the government’s announcement

last year, with a number of presentations

around the country to explain our

understanding of the unfolding picture. To keep

you engaged, we would like to emphasize a

couple of aspects as things have become

much clearer. Commissioning is a cyclical

process where healthcare services are

planned; healthcare providers are then

recruited and contracted; and then the

delivery of the contracted services is monitored

against the specifications to ensure that safety

and quality are continuously improved. It is

important that the service users as key

stakeholders get involved with the process to

influence the decision making at every stage

of the cycle and so ensure that the

commissioned services are as responsive as

can be to the needs of the service users.

http://www.commissioningboard.nhs.uk/

HealthWatch England is the organ of the

emerging reforms that will enable the voice of

the public and the patients to influence care

arrangements. At national level, HealthWatch

will advise the Secretary of State for Health, the

NHS Board and the Care Quality Commission

(“the inspectors”), among its key duties. Your

local HealthWatch will enable you to influence

decision making of your local authority, health

& wellbeing boards or senates and other local

scrutiny arrangements.

In practice, hitherto (regional) strategic health

authorities and (local) primary care trusts will no

longer exist by 2013. The new NHS Board will

commission Clinical Commissioning Groups to

in turn commission healthcare for local

populations across England. However, it must

also be pointed out that some healthcare

services will fall under the direct commissioning

responsibility of the National Board. These

services known as specialised services are

reserved for designated “low volume and high

cost” conditions that, are argued, would make

sense (on cost-effectiveness) to commission

them on a nationwide basis. Sickle-cell disease

falls within this latter category. Indeed, in July

2011, a DH Expert Working Party submitted a

framework for commissioning sickle-cell and

thalassaemia services. It is important that we

go into this level of detail for two reasons:

Firstly, to ensure that people affected by sickle-

cell disease are informed of the developments

as clearly as possible; secondly to ensure that

everyone affected is aware of the potential

risks of dis-engaging from the development.

Local realities are best highlighted by those

who are well-informed and living in the locality

of service. There is an even more serious

inherent risk. The designation of “specialised

condition” is a technical definition/

specification of what services will form part of

the package to be commissioned. It is

therefore vital that those services that do not

fall under the “specialised package” are

identified and locally highlighted through the

local watchdog or scrutiny structure, so as to

ensure their commissioning at local level.

Comprehensive care for people livingwith sickle cell disease in England:Department of Health support for a meaningful

partnership for the future - Winter 2011 Update

Dr Asa’ah Nkohkwo FRSPHNationwide Adviser, Comprehensive Care

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 3

Sickle Cell Society | News Review06 | The Society projects

THE COMMUNITY HUB: ENSURINGINTEGRATION & CONTINUITY OFCARE CLOSER TO HOME

The concerns raised above are most important,

given that NHS commissioning has originated

so far from clinical (acute or hospital) care

perspectives. While the DH Commissioning

Framework for Sickle Cell & Thalassaemia

commendably engaged service users input

throughout the year-long development

process, the eventual framework is (as a result

of remit) superficial on the commissioning of

non-clinical determinants of health. The

framework is, nevertheless, a very timely

document which should help to mainstream

sickle-cell and thalassaemia care within the

emerging NHS commissioning. The inclusion of

a dedicated section on Community Care offers

a most welcome opportunity to responsively

address key concerns that came from my

nationwide itinerary during the development-

that until a cure is routinely available, people

would rather live with sickle-cell disease in the

community, if a meaningfully wider public

health approach were adopted by those

commissioning services.

It is hereby argued that the new DH

Commissioning Framework for sickle-cell and

thalassaemia (DH-EMSCG Pilot National

Haemoglobinopathies Project July 2010),

should serve as the basis to engage local

decision makers, especially commissioning

and public health managers. The object of

engagement should be to ensure that

integration and continuity of care exist for

people affected by sickle-cell disease, by

ensuring the provision of vital services not

addressed by the NHS Specialised Services

Definition Set No. 38. As mentioned in the

Summer 2011 news review, a model to ensure

that cost-effective comprehensive care is

delivered as responsively as possible and close

to home as possible has been co-designed

from nationwide consultation and the Sickle

Cell Society’s learning from its flagship Regional

Support Care programme. A commissionable

“Community Hub” (Fig-1), we argue, would

deliver in one locality hub all the essential

support & non-medical services. This would

help bridge the likely gap between national

policy and local realities and so ensure the

responsive integration and continuity of

healthcare required to enable people with

sickle –cell disease achieve their full potential

across the country

NEXT STEPS, CONSULTATIONS & OTHER NEWS

Starting with a road-test in the East Midlands, plans

are on the way over the coming months, to roll-

out alongside the DH Commissioning Framework

a users satisfaction questionnaire to enable us

help improve services for sickle cell and

thalassaemia. Hence, we will be asking you to tell

us your experience of a recent use of your local

NHS service. Also, the planning for the next UK

Forum led peer review of treatment centres and

network is being finalised. Thank-you to those of

you who offered to serve on the visiting teams.

Training will happen soon ahead of the inspection

visits next year, which will centre on adult patients.

The reports from the paediatric centres visits are

now available online on the website of the West

Midlands Public Health Observatory

(http://www.wmqi.westmidlands.nhs.uk/wmqrs/ )

under the publications section: under the review

programmes drop down – select Sickle Cell and

Thalassaemia; under the document types drop

down – select Peer Review Visit Report.

The DH SaBTO blood safety report (ref Sickle Cell

News Review Summer 2011, page 11) revising

the blood donor deferral criteria (from lifetime

ban to one year post- encounter) for Gaymen

was finally published in September. This can be

downloaded from the DH website. Finally, the

DH-NICE guidelines on managing acute painful

sickle cell episode in hospital setting should be

ready for public consultation in the coming

Spring. Meanwhile, a much broader document

on the same topic is being finalised by the British

Committee for Standards in Haematology,

under the leadership of Dr Denise

O’Shaughnessy, our 2011 Vodafone World of

Difference champion. As ever, we will keep you

posted on developments.

Community Hub SINGLE POINT OF

ACCESS CO-ORDINATION OF

SERVICES: INTEGRATION &

SOCIAL SERVICES HOUSING BENEFITS CHILD CARE

GP COMMISSIONING CONSORTIA

NHS HAEMOGLOBINOPATHY AND RELATED SERVICES

TRANSPORT COMPLEMENTARY THERAPIES

HOME CARE SUPPORT

CARER’S SUPPORT

MENTAL WELL-BEING SERVICES

DRY HYDROTHERAPY

WHOLE SYSTEM SELF MANAGEMENT PROGRAMMES

CLIENT A REFLEXOLOGY BENEFITS

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

CLIENT B SELF MANAGEMENT PROGRAMME HOME CARE CARER’S SUPPORT

EMPLOYMENT & EDUCATION

CLIENT C DRY HYDROTHERAPY MENTAL WELL BEING SOCIAL SERVICES

CLIENT D TRANSPORT HOUSING

CLIENT E CHILD CARE SUPPORTING

PARENTS PROGRAMME

CONTINUITY

Follow SickleCellUK on Twitter

Add Sickle Cell Society UKto your Facebook

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 4

Society news and events | 07News Review | Sickle Cell Society

The Sickle Cell SocietyChildren’s Holiday 2011By Comfort Ndive - Regional Care Advisor, North London

On August 6th 2011, parents and their children

came to the Society’s Headquarters, marking

the start of the week long annual Children’s

Holiday which once again was at Woodrow

High House in Amersham. Out of the 36

children approved, 25 of them finally made

the list. The remaining 11 children could not

make it due to distance, particularly those from

Manchester and Liverpool, some of them were

sick, others just turned down the offer. The

Society does contribute towards transport fares

to those children coming from outside London.

We had children who came all the way from

Bristol, Milton Keynes, Wolverhampton and

Dudley, to name but a few.

We had 12 trained volunteers that were police

checked who cared for the children during

their stay, along with 3 nurses; two specialist

nurses and a school nurse. We were privileged

to have with us Anndeloris Chacon, a specialist

nurse/Director/Centre Manager from Bristol who

graciously gave her time for a good cause to

support us with the clinical care aspect during

this period. All nurses carried out their duties

diligently, ensuring that each child had their

appropriate medication at the stated time.

Any child that showed any sign of discomfort

or pain was promptly well catered for. Ann-

Deloris and her team (Esther, Gloria and Angela

did such an amazing job that no child was

admitted into hospital this year. The carers

were brilliant; this year we had two male carers

on board, all the carers carried out their duties

well, donating their time to make a difference

in putting a smile on the children’s faces with

some of the carers having done so for 22

years. We can proudly say that the Society is

privileged to have such a dedicated and

committed team of volunteer carers.

The children enjoyed the activities such as the

trips to Chessington, where they had lots of fun

on the rides, seeing animals such as lions in the

Zoo. Our visit to Odds Farm was more suitable

for the younger kids.

We love animals

Look!!! I can drive

The arts and craft work was where the children

displayed their creativity. They worked hard on

their individual designs and the end product

of some of them was fantastic and very

beautiful. It was gratifying to see the children

in such great spirits, there was team work in

their various groups; we had six groups, divided

into various colours.

CROYDON Sickle Cell

& ThalassaemiaYoung PeoplesSupport Group

Our meetings are held everysecond Saturday of the month

Time: 1pm-3pmVenue: Croydon sickle cell

& thalassaemia centre

316-320 Whitehorse RoadCroydon Surrey CR0 2LE

Tel: 07548 700 856/ 07770 238 479/020 8251 7259

We would like to encourage allyoung people aged 13-24 to join us

and make a difference as wevolunteer our help to impact others.

Patrons: Dr Mary Clarke, Dr. Kofi Anie,Ms Charlene White

“A helping hand is sometimes all that is needed”

Registered Charity Number 1100120

Our young people’s group are all

members of the Croydon Sickle

and Thalassemia Support Group

which is a registered charity based

in Croydon. Our young people’s

support group includes individuals

aged from 13-24 years old that

may or may not be directly

affected by sickle cell and

thalassemia. The main aims of

the youth group is to educate

the public and raise awareness

of sickle cell and thalassemia,

and, help improve the quality of

life to affected individuals, their

families and carers.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 5

Sickle Cell Society | News Review08 | The Society projects

The staff at Woodrow were exceptional, they

organised numerous activities, enjoyable

entertainment which kept the children busy. The

cooks were great; they made sure that we had

our three square meals a day. One new aspect

to the holiday was that Ann-Deloris provided a

30 minutes training session on sickle cell to both

the children and carers. This particular session

was quite informative and everyone enjoyed it.

Our lead facilitator (Patsy) did a wonderful job,

organised our timetable, everyone was

comfortable in their rooms, made sure the

children had all their needs met, she arranged

a bible quiz in colour groups which the children

loved, it was great fun. Surprisingly the children

were quite knowledgeable on questions asked

from the bible. A Big Thank You to a marvellous

lead facilitator who worked tirelessly with grace

and impeccable tolerance, ensuring that

everyone had an enjoyable and exciting time

at Woodrow House.

I would also like to take this opportunity to say A

Big Thank You to Helen Appleby (Paediatric

Sickle Cell Specialist Nurse) of Evelina Children’s

hospital at St Thomas’ Hospital for speedily

progressing our request for an oxygen cylinder

needed by one child. We appreciate the quick

action Helen took as this helped to take away

the stress and anxiety that would surely have

ruined the group’s summer holiday.

The children had lots of fun and their evaluation

forms clearly showed they had an exciting time

at Woodrow House.

CAN YOUDRAW?

(For young people ages 6 to 18 years)

Do you fancy designingthe winning pictures for

the cover and insidepages of the new edition

of the NHS Sickle Celland Thalassaemia

Screening Programme’s parent /carers guide?

The drawings should be any one of the following themes:

➢ Playing in the park➢ The Classroom

➢ Going on holiday➢ Having fun activities

The winner/s will receive some lovely prizes,

including:

‘JLS’ Goody Bagsso what are you waiting for!

All entries (including your contact details

and age) should be in by 31January 2012

and submitted as follows:

By Fax: 0208 961 8346

By Email: iyamide.thomas@sicklecellsociety.org

By Post: Competition, Sickle Cell Society 54

Station Rd, London NW10 4UA

For more info call Iyamide on

Tel: 07841 558611

GOOD LUCK!

We are having a great time

We are so creative

Comfort Ndive dancing with the children

COMPETITION • COMPETITION

COMPETITION • COMPETITION

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 6

News Review | Sickle Cell Society The Society projects | 09

Photocall at museum entrance (All photographs by Shamick Edmond)

Thanks to the Roald Dahl Marvellous Children’s

Charity, the Sickle Cell Society was funded for

a daytrip to the Horniman Museum recently,

bringing some sunshine into the lives of children

living with sickle cell disorder in South London.

Oops, did I say ‘sunshine’? The more discerning

among you will judge from the article’s title that

I have used this word as a metaphor! However,

we were not going to let a little thing like the

British weather get in our way (though this was

why I had opted for the October half-term

rather than February and the Horniman rather

than the Tower of London) so at 11am on a

rainy 26th of October 2011, the group of

sixteen young people age 2 to18 years

(including two sets of twins and 4 siblings) and

their volunteer carers set off from All Saints

Community Centre in New Cross. Darren our

friendly coach driver tried his best not to let us

get wet however having to cross the road upon

arrival prompted one youngster to ask why the

rain was ‘following’ us. Bless!

Our first port of call was the Hands on Base

Gallery where I had booked a group workshop

with Zoe Carmichael from the Community

Learning Team. This was on puppeteering and

was a good way to start the day. We were shown

how different types of puppets were made to

perform after which we did group work and

each group was given a selection of puppets

and props to devise and perform a story. A big

thank you to Zoe for giving us such fun!

Next was the Aquarium which showcased

aquatic environments from around the globe,

ranging from the British coastline to Fijian coral

reefs. The young people watched a huge variety

of aquatic life and the massive variation in the

body shapes, colours and behaviours of animals

in different habitats. Not only did they see

amazing animals close up but they also learnt

about the interesting lives and places where

they live in the wild.

After lunch it was a trip to the Music Gallery

where the Horniman's internationally renowned

collection of some 1,600 instruments from

around the world is displayed. The group

enjoyed listening to the music of some

instruments at sound stations and watching short

films linking these instruments to the cultures and

contexts in which they are played. Next to the

“Why is the rain following us?” - Children Visit the HornimanBy Iyamide Thomas - Sickle Cell Society Regional Care Advisor, South London

Natural History Gallery packed full of stuffed

animals, skeletons and fossils as well as

specimens preserved in fluid which gave the

gallery a unique historic feel. The young people

were particularly taken by a taxidermy mount of

a walrus collected over 100 years ago! Our last

visit was to African Worlds an exhibition that

displayed objects from across the continent of

Africa. There were also artefacts from other

countries including Brazil and Trinidad whose

cultures were strongly influenced by Africa.

Highlights of the exhibition included

masterpieces of bronze art from Benin depicting

the arrival of the first Europeans to Africa, and

the spectacular Igbo Ijele, Africa's largest mask,

and the only one of its kind on display in Britain.

The final ‘treat’ in store was a trip to the museum’s

reasonably priced souvenir shop where each

young person could choose a gift up to the

value of £5.

As I knew better than to let everyone loose in

the shop at the same time this was done in

groups and even this was not without some

chaos! Darren then took us safely back to base.

The young people and carers (to who I express

many thanks) had enjoyed an educational and

fun day out. As for me, I needed a good soak

to ease my aching muscles but hey the pictures

surely show all my efforts were worth it!

Funded By

Time for human puppets

African Worlds

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 7

Sickle Cell Society | News Review10 | The Society News

Blowing Their Trumpet

At this year’s Trumpet newspaper ‘Gathering of

Africa’s Best’ (GAB) award ceremony held on 23

October 2011, three exceptional ladies

connected to the Sickle Cell Society (in one way

or another!) received recognition for their work.

Our very own Regional Care Advisor for South

London, Iyamide Thomas received a health

award for “walking the extra mile in providing

information, support, advocacy, advice and

access to services to sufferers so they can

realise their full potential”. Princess Deun

Adedoyin-Solarin, producer and host of the

'Princess of Arize!' Saturday Breakfast Show on

BEN TV received an award for excellence in

media. Princess is a strong supporter of the

sickle cell awareness cause and has

interviewed Iyamide and service users on her

show on several occasions. She has also aired

the ‘Family Legacy’ film. Actress Ellen Thomas

(Eastenders and Rev) received her award for the

Arts. Ellen is one of the Sickle Cell Society’s

celebrity supporters and presented the floral

tributes at the last AGM.

The GAB awards were founded by the Trumpet

newspaper to promote the positiveness of

Africa and reward the numerous Africans who

are changing and impacting lives positively

around the world. The Sickle Cell Society

congratulates these ladies for receiving their

coveted awards.

L-R: Ellen Thomas, Princess Deun and Iyamide Thomas show off their awards

(Picture by Emmanuel Urhiofe)

G4S Assessment Services on 13th October

2011 held an event at Solihull, Birmingham to

recognise the achievement and effort

involved for those organisations that have

been successful in their applications for the

Customer Service Excellence and The

Information Standard. The Sickle Cell Society

was presented with the official information

standard award.

Keeping to the standard

L-R Mr Colin Mackenzie, Contract Director

for the Information Standard, Mrs Carlotta

Olason, Health Information officer of the

Sickle Cell Society, Dr Asa’ah Nkohkwo,

The Sickle Cell Society Nationwide,

Comprehensive Care Adviser and Roger

Boyd – Business Development Director

from G4S Assessment Services (UK) Ltd.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 8

The Society News | 11News Review | Sickle Cell Society

32nd Annual General Meeting

Dr Kofi Anie is a Clinical Psychologist was

elected scientific adviser for the Sickle

Cell Society.

Mrs Stephanie Sulliaman, Mrs Cecilia

Shoetan and Dr Asa’ah Nkohkwo.

The Floella BenjaminAchievement Award

Established by our Patron Baroness Floella Benjamin

OBE, DL in the 1990s, this certificate is presented to

individuals or groups who have realised a

significant achievement for Sickle Cell Society i.e.

by fundraising or a personal achievement by

persons with a Sickle Cell Disorder.

Joint winners were: Mrs Cecilia Shoetan and Mrs

Stephanie Sulliaman.

Novartis Scholarship

Founded in 2006 by Dr Lorna Bennett FRSA, then

chairperson, this tuition fees and certificate

award seeks to recognise and encourage

excellence in academic endeavour by

Individuals with sickle cell disease.

Winners: Ms Ayodele Ayoola, Ms Laurel

Brumant-Palmer, Mr Ivraldo Manuel Oliveira

San, Mr Lewis Thomas

Black On Black Award

Established thanks to our Patron Trevor Phillips

OBE, during his days as editor at London

Weekend Television in the 1990s, this certificate

recognises creative work by a person

personally suffering from sickle cell disease.

Winners:

Adult: Ms Etomby Namme

Young Person: Mr Jermaine Adeniregun

Dr Asa’ah Nkohkwo FRSPH , Dr Lorna

Bennett and Lewis Thomas a Medical

student at The University of Nottingham

The Sickle Cell Society held its 32nd Annual

General Meeting on Saturday 16th July at the

Emmanuel Centre, Marsham Street,

Westminster, London SW19 3DW attended by

over 200 service users, carers, stakeholders, staff

and trustees. It was a memorable day. The

Society launched the new website. It was also

a day of celebration and various awards were

presented.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 9

Sickle Cell Society | News Review12 | The Society News

THE SICKLE CELL

SOCIETYThe first Patient &Carer Seminar onAdequacy & Safety

of Blood Supply

Date: Wednesday

22nd February 2012

Time: 9am-3:30pm

Venue:Governors Hall Complex

St Thomas HospitalWestminster Bridge Road

London SE1 7EH

For more information andregistration please contact:

The Health Information Officer

The Sickle Cell Society54 Station Road

London, NW10 4UA

Email:info@sicklecellsociety.org

Telephone: 020 8961 7795

Sponsored by an unrestricted grantfrom: CardianBCT to become

TerumoBCT

UPCOMING EVENTS

OutstandingAchievement Award

This certificate is awarded to either an individual

or a group, and recognises achievement in any

field of relevance to the sickle cell cause,

including fundraising. The Winner was Ms Sekayi

Tangayi from NHS Newham.

Ms Sekayi Tangayi with Anne Welsh

Volunteer Of The Year

This is awarded to a candidate chosen by the

staff of the Society, in recognition of their

contribution to alleviate the suffering of those

living with sickle cell disease, or assisting with

administrative work of the Society.

Winner: Pansy Gabriel and Mrs Julie

Coker of the Richard Coker Foundation

Outstanding Personality Award

Founded by Mrs Sherlene Rudder MBE, this

certificate is presented to a candidate chosen

by the Chairperson of the Society in recognition

of the nominee’s outstanding contribution to the

cause of the Society. The award went to

Professor Simon Dyson from De Montfort

University (DMU), Leicester, UK

Professor Dr. Simon Dyson with Anne Welsh

Chair of the Sickle Cell Society

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 10

Service user news | 13News Review | Sickle Cell Society

I am Oluwaseun Ololade Obilana, a new

graduate from the Middlesex University but

known as Lolly or Lola depending on the one

you feel most comfortable with. Growing up

as a child I loved, lollies, ice creams, and

cakes and used that as my survival menu most

of the time hence the nick name Lolly.

Born with sickle cell, I have always been in and

out of hospital most of my life, missing school,

lectures and oh yes fun times with friends. I

hated the condition, felt sorry for myself, and

would often withdraw from the outside world not

wanting to participate in activities.

I avoided activities that could trigger painful

crisis, and other activities that would expose who

I was. I disliked social gatherings and even

physical exercise that could keep me fit and well

but support and empowerment from various

people helped me to step out of my shell

through their love, care and constant advice .

I recently suffered aneurysm (ruptured

aneurysm), during my time at university and

had to miss lectures, but graduated from

Middlesex University with a first class degree in

accounting and finance. It may not seem

much, but I’m proud of this achievement.

I remember times when I had to ask my cousin

for massage during a painful crisis and my mum’s

constant advice never, never to give up, no

matter how sick I become. My dad’s advice was

to believe in myself and always do my best in

everything. I thank friends for their understanding,

and constant encouragement, church leaders

and members for their constant prayers, support,

during hospital visits and health consultants for

their support during every visit to the hospital,

without their expertise in the treatment of sickle

cell, I would have been dead.

I love who I am now, and wouldn’t change it for

anything in the world. I’m blessed with a lovely

health through God’s mercies and making

progress with my life. I do encourage every one

out there to believe in themselves, and not be

a victim to sickle cell but be victorious, engage

in activities of interest whenever you can and

access the community services, as this is a

great source of empowerment one can get.

So what next? I am currently taking a breather

whilst volunteering for the Sickle Cell Society, till

next year when work in the accounting field

starts fully, but using the time to develop myself

in areas of interest (music and beauty), getting

fit, socialising and finding my passion.

Rest in Peace Sickle CellBy Oluwaseun Ololade Obilana

SERVICE USER NEWS

For now, I am telling sickle cell disease to rest

in peace, so I can move on with my life, face

other challenges that lie ahead because I

believe I am made for something bigger and

aiming high.

WOW! BEFFTA awards for best TV Actress By Nancy Segilola Scott

As a “sickle cell patient”, what I have achieved

so far is apparently uncommon. I found out I

had sickle cell anaemia at the age of five and

have since achieved 10 GCSEs, 3 A-Levels, a

BA, and a Masters. I read the Prime Minister’s

speech for the Sickle Cell Standards launch,

trained as a professional actress, acted in

many stage plays, musicals, films, and

currently working as Development Executive at

an International Film Company. I shot the new

TV series called BREACH in which I recently won

a BEFFTA award for Best TV Actress and last, but

not least I have written screenplays that have

been nominated for best screenplays – one in

Monaco which I’m preparing to attend in

December. As I read back to what I have just

written, I think yes wow! What an achievement

– and I only just turned 26!

Not all of my achievements happened

overnight – in fact, it’s taking time for me to get

to where I am – though it doesn’t seem that

way. I have always been an ambitious person

and I was not prepared to allow this sickle cell

disease to hinder me in any way.

Through strong family support and fantastic

user groups, I have been able to get this far at

this age. The user groups are great in the sense

that you learn new ways of managing the

crises and it’s a great place to go to get

encouragement from people who actually

understand the challenges a sickle cell sufferer

faces, not only on a daily basis but also during

a crises. In addition, having Anne Welsh (a

sickle cell sufferer) as the Chairman of the

Sickle Cell Society is a bonus because she has

a deep understanding of the issues we face

and is a great voice to have on our behalf.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 11

Sickle Cell Society | News Review14 | Support group news

Hello everyone, it’s such an honour and a

great privilege to write in this Newsletter.

My name is Esther Abiola Idowu and the mother

to Daniella Iyanuoluwa, who has Sickle Cell SC

disease, I am a carrier of the C trait and my

other two children are also carriers of the C traits.

We have spent the last few years in England but

relocated to Glasgow Scotland this year June

2011 where I am presently at College studying

science with the intention to go into

Pharmaceutical and drug research that can

and will help Sickle Cell and Thalassaemia

patient live a life of less painful crisis or none at

all. I believe that my passion to return to

education and start again stems from my

constant heartbreak each time my daughter

has a crisis either a mild one or a serious one

that often end up in the hospital.

With the support of the community, and the

encouragement of the team at the Scottish

Paediatric and Adult Haematology (SPAH)

services at the Queen Mother’s Hospital in

Glasgow, I am, at the moment, coordinating

the formation of a support group for Sickle Cell

and Thalassaemia in Scotland to help

generate more awareness and provide

support to patient, parents, carers and health

professionals by liaising with the Sickle Cell

Society UK and enjoying getting updates on

government initiatives as well as health

improvements that are being introduced to

benefit the patient.

Our move to Glasgow Scotland has been a

great experience; it has helped me to see the

importance and value of a Support network of

parent and health care professionals that were

always available in London. This has enhanced

my desire to see the same take off in Scotland

as well. Dr Asaah Nkohkwo (Nationwide Adviser)

and Ms Carlotta (Health Information Officer,

Sickle Cell Society) spoke about developments

south of the boarder at an awareness day

organized by the SPAH services and held at the

historic Kelvin Grove Museum & Art Gallery in

Glasgow on 8 October.

After asking questions, I realised that the

support system of YOU ARE NOT ALONE that we

have in England is missing, it is my utmost

desire to let every patient, every carer and

parent from Glasgow to Edinburgh know that

THEY ARE NOT ALONE.

The group at the moment is hoping to be

launched in the spring of 2012. We hope to

make it a day of educational awareness and fun

for all participants. The decision for the launching

to be in spring is to allow us be to be fully

prepared as well as for the cold season to pass.

(It’s really cold in Scotland, no joke about it).

Our support group will be called Scottish Sickle

Cell and Thalassaemia Support group and we

are aspiring to be able to create a network of

better awareness for patients, as well as enjoy

the benefits of being under the umbrella of the

Sickle Cell Society UK and Thalassaemia UK. We

have incorporated the support group into one

to allow us get started in supporting each other.

Since the same patient can carry both the

thalassaemia and sickle cell genes.

Quoting the consultant, Dr. Elizabeth Chalmers

at the last SPAH awareness day, the era of

Scotland having only two Sickle Cell patients

has gone, it is time to look into the future and

see where patient, parent and health

professionals can come together and make it

better for all concerned.

I believe the future of sicklers and their carers

in Scotland is great. I also believe Scotland is

ready for changes that will not only benefit the

patient, but will also benefit the health service

and the health professionals in general. As, the

better the awareness the group can create

and sustain the better it will be for all

concerned.

Thank you.

Scottish Sickle Cell and Thalassaemia Support Group

...because you are not alone

SUPPORT GROUP NEWS

Chairperson: Esther Idowu

Treasurer: Akeem Akinkunmi

c/o Laura Craig

MCN Co-ordinator

Scottish Paediatric & Adult

Haemoglobinopathy (SPAH)

MCN Department

9th Floor Queen Mother’s Hospital

Dalnair Street, Glasgow G3 8SJ

sicklethalassaemiascotland@yahoo.com

Esther Abiola Idowu

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 12

Update from the screening programme10th anniversary and recognition for the programme

New publications and trainingNewborn OutcomesProject

This year we have been celebrating 10 years

of screening. Working collaboratively with the

Sickle Cell Society, UK Thalassaemia Society

and the All Party Parliamentary Group on

sickle cell and thalassaemia, we held a major

event in parliament in June, which was

attended by many MPs, celebrities and key

stakeholders in our field.

We also ran an exhibition in Guy’s Hospital for a

week which was open to the general public.

We were delighted that our director, Dr Allison

Streetly, was awarded an OBE in the New Years

Honours list. This is recognition for Allison

personally but also an acknowledgement of

the tremendous progress that we have all

made to put sickle cell and thalassaemia on

the map.

L-R Mr Gabriel Theophanous President UK Thanlassaemia Society Anne Welsh Chair of the

Sickle Cell Society, Mr Trevor Phillips OBE chairs the Equality and Human Rights Commission

(EHRC , Diane Abbott MP, Chair of the APPG on Sickle Cell and Thalassaemia Jonathan Gill

(JB) from JLS

We have just published our annual report

which you can download from our website at

http://sct.screening.nhs.uk/cms.php?folder=2

422).

Also new is the second edition of the

Programme Standards – these clarify what we

expect services to deliver setting a clear

framework across screening. See these at:

http://sct.screening.nhs.uk/standardsandguidelines

We are working on a leaflet to support men to

engage in screening. This will be available in

the New Year and we will be working with the

Society to get feedback from men. This is part

of a wider piece of work to inform men and

support services to engage them.

We are also developing a suite of leaflets for

people identified as carriers through screening.

A big thank you to the SCS as it continues to

support the newborn outcomes project. As well

as helping us to demonstrate the effectiveness

of the screening programme and ensuring that

all babies identified as having sickle cell

receive treatment and care promptly and stay

healthy, the project will also help us audit how

well the antenatal programme identifies

couples at risk and whether mothers are

offered timely screening in pregnancy.

There will be a separate leaflet for all the main

carrier types identified. These will also be

available from the New Year. For more on

leaflets, check out:

http://sct.screening.nhs.uk/public-resources.

We worked with a wide range of stakeholders

including the Society to produce a set of

competences for nurses. This will be part of the

training for nurses and should make a real

difference in ensuring that nurses across the

NHS are better informed about sickle cell and

the needs of patients. You can see the

competences at:

http://sct.screening.nhs.uk/professional-

resources

Service provider news | 15News Review | Sickle Cell Society

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 13

Sickle Cell Society | News Review16 | Service provider news

Reaching out to the public Acting up

Your blood is special and will help save lives

The Society is an important partner in our

outreach work. Iyamide Thomas from the

Society leads our highly successful project

using the Family Legacy drama on DVD. With

a small team, she has shown the DVD and held

facilitated discussions in a huge variety of

settings including barber shops, family homes

and community groups. Now she is working to

set this project up in Bristol and Birmingham.

Iyamide is also closely involved in a big project

we are running with NHS Blood and Transplant

(NHSBT) and the Seventh-day Adventist Church.

NHSBT is a great partner for us because they

always need blood from black and minority

ethnic groups. We use sickle cell as an

example of why people need “community

matched” blood. The Adventist church has a

strong commitment to health and so we are

hoping to train congregations in 200 churches

across England about blood and sickle cell. Do

let us know if you are a member of the

Adventist Church and would like to be involved.

Email us at haemscreening@kcl.ac.uk

Every day, 200 people from African /Caribbean

and south Asian backgrounds give blood. It

sounds like a lot, but we need blood donations

from 7,000 people a day just to meet demand.

Over 4% of the population currently donate

blood, but less than 1% of all donations come

from black or minority ethnic communities.

In this country, approximately 14,500 people

have Sickle Cell Disease and they rely on blood

transfusions to help them cope with such a

debilitating disease. To get the blood they

need, the must rely on people in their own

communities to donate it.

Specific blood groups are more common

amongst people from the black community. For

instance 25% African/Caribbean’s are blood

group B, compared to only 9% of Caucasians.

Rare blood group U negative is only found

amongst people from this community as well.

During a blood transfusion, a person receives

healthy blood from a donor which is carefully

screened for diseases before it is used.

Blood transfusions can treat sudden or short-term

complications related to sickle cell disease, such

as reducing the number of painful crisis a patient

experiences and the risk of stroke in children can

be reduced by up to 90%.

Anyone interested in becoming a donor should

be aged between 17-65, weighing at least 50

kg (7 stone 12lbs) and in general good health.

If you have donated before, you can start

again up to your 70th birthday and there is no

upper age limit for donors who have donated

in the last two years. To book an appointment

to find out further information or to discuss

blood. Telephone: 0300 123 23 23 or visit

www.blood.co.uk

Author Mr Theo Clarke, Lead Donor Relations

Manager - BME & Special Projects

Roald Dahl Specialist Nurse Project

The Programme is delighted to be undertaking

a project for the Roald Dahl Marvellous

Children’s Charity to identify the benefits of

specialist nurses, look at the advantages of

continuing with existing posts and explore the

need for increasing the number of specialists

nurses for sickle cell and thalassaemia.

A working group, chaired by Elizabeth Anionwu,

emeritus professor of Nursing, West London

University (formerly Thames Valley University), has

been established and there has been some

tremendous support from voluntary groups,

including the Sickle Cell Society with Anne

Welsh playing an important role in the project.

The Programme is working in collaboration with

the Wellcome Trust and a theatre company

called Y Touring is a project that will help raise

awareness of sickle cell. The group, Y Touring,

is producing a play which will tour schools

around the country and be featured strongly in

National Science Week. There is back up

material on White Boards used in schools and

for teachers in lesson plans. The play is mainly

about personalised medicine but has a strong

sub plot around sickle cell. We are supporting

this project as a first step to wider engagement

in schools education.

Blood and Transplant

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 14

APPG update | 17News Review | Sickle Cell Society

Help raise awareness of sickle cell and thalassaemia in Parliament!

Members of Parliament (MPs) are elected to represent their constituents’ interests and concerns in the House of Commons. Some MPs have joined the

All Party Parliamentary Group on Sickle Cell and Thalassaemia, which is forum for patient groups and professionals to speak to Parliamentarians.

However in order to be really interested, MPs need to understand how these conditions are affecting their constituents. In order for your local MP to

effectively act on your behalf, he/she needs to know what issues you are concerned about and how he/she can help – so you need to tell them!

MPs receive a huge amount of correspondence and are most keen to know about issues which are personally affecting their constituents – this is why letters

from individual patients are so important.

A STEP-BY-STEP GUIDE TO WRITING TO YOUR MP….

WHAT CAN YOUR MP DO FOR YOU

To make sure that you get the most from the

MP it is usually a good idea to ask the MP (or

indeed a Lord or Baroness) to do something for

you as well as explaining your problem.

Some things you can ask your MP to do in your

letter could include:-

• Write a letter to a Government Department

to raise the issue of concern

The Government will take into account the MP’s

views and will respond

• Raise the issue in Parliament

The MP can ask the Government a question or

conduct other official parliamentary activity to

raise your concerns in parliament.

• Write a letter to a local organisation or

authority

The MP can write to the local PCT, hospital,

social services or DLA office to raise your

specific case or concern, and/or ask for general

information on funding, services or policy.

• Meet with you to discuss the issue and

further action they can take

• And don’t forget - ask them to join the APPG

on Sickle Cell and Thalassaemia!

• Ps, you can also follow the above procedure

for members of the House of Lords, but do

make sure you use the correct form of

address- “Dear Lord or Baroness”

• FINALLY, PLEASE, DON’T FORGET TO COPY THE

SICKLE CELL SOCIETY

CONTACTING YOUR LOCAL MP

Normally MPs will only take on the case of people who live in the

constituency which they represent. To find out who your local MP is, you

can go to this website and type in your postcode

http://www.theyworkforyou.com/

The letter can be sent to the MP’s constituency office or you can

address it to the MP at House of Commons, London, SW1A 0AA

The letter should be as concise as possible – usually only one page

of A4 paper. It should be clearly legible – either typed and signed,

or handwritten. If it is not possible to send a letter, an email is a

good alternative but remember to include your full address,

including postcode.

WRITE A LETTER TO YOUR MP

The format of the letter should be along the following lines:

1. Explain that you are a constituent

2. Explain your story and your concerns! We hear about lots of issues

from patients, professionals and families, such as:-

• Prescription charges

• Poor treatment in A&E

• Adequate specialist nurses posts

• Lack of social care support

• Lack of resource in the NHS compared to other conditions

• Lack of understanding of conditions by schools

• Difficulty in getting Disability Living Allowance

3. Ask the MP to take action – see below!

APPG UPDATE

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 15

APPG Update - 2011-2012 Programme of Activity

Over the summer, the All-Party Parliamentary

Group (APPG) secretariat conducted a

consultation with stakeholders to establish what

they felt the priorities for the group were. Over

15 organisations and individuals responded to

the consultation. Having reviewed the

consultation responses the UK Thalassaemia

Society and the Sickle Cell Society have

agreed the priority topics for discussion by the

APPG in the 2011-12 term, which have now

been agreed by the Officers of the APPG.

• Making it work: Dealing with Employment

issues among patients with sickle cell and

thalassaemia (Winter 2011)

• New Frontiers: Promoting Research into

Haemoglobinopathies (Spring 2012)

• Growing Pains: Smoothing the transition from

paediatric to adult care in Haemoglobino-

pathies (Summer term 2012)

Update on other activities of the APPG

We have also continued to see progress in the

areas raised by the APPG over the last year. At

an APPG meeting in March 2011, the topic of

specialist nurses was discussed. One issue

raised was the importance of demonstrating

the value of specialist nurses to commissioners,

and the need for a model business case that

will really help to create or protect posts.

Following the APPG meeting on the subject

and subsequent discussions, the Sickle Cell and

Thalassaemia Screening Programme has

formally been awarded a grant from the Roald

Dahl's Marvellous Children's Charity to

undertake a project on specialised nurses for

Sickle Cell and Thalassaemia. The NHS Sickle

Cell and Thalassaemia Screening Programme

are delighted to be working on this very

important project with a key ‘Working Group’.

The project will report its progress/findings in the

first half of 2012.

Following the APPG meeting on Social Care

and Disability Living Allowance (DLA) reform last

year, and the APPG joint response to the DWP

consultation on DLA reform, the UKTS and Sickle

Cell Society were invited to participate in

discussions with Department for Work and

Pensions officials. The Sickle Cell Society and

UKTS continue to participate in stake-

holder meetings on the revised Personal

Independence Payment, which will replace

DLA in 2013. The next meeting with the

Department for Work and Pensions is in

November 2011.

On behalf of the National Quality Board, NICE

ran a consultation over the summer asking for

input from health professionals, providers and

the public about clinical areas for adoption

into the library of NICE’s new quality standards.

These describe best, evidence-based practice

for ‘high quality, cost effective care’. These

Quality Standards will contribute to the

outcome measures that the NHS will be

measured against in the future, so they will give

strong leverage for patient groups and

professionals to measure and improve services

in the areas that stakeholders have identified

to the APPG.

The Sickle Cell Society and other key

stakeholders have responded in order to

support the development of quality standards

in the areas of Sickle cell crisis, Transfusion and

Pain management (young people and adults),

and to ensure that the interests of sickle cell

and thalassaemia patients are represented in

further discussions on these issues.

Finally, the APPG Vice Chair David Burrowes MP

represented the APPG on Sickle Cell and

Thalassaemia at a meeting of the Specialist

Health Care Alliance in the House of Lords in

October 2011. The Specialised Healthcare

Alliance (SHCA) is a coalition of 68 patient-

related organisations supported by 10

corporate members which campaigns on

behalf of people with rare and complex

conditions requiring specialised care. The Sickle

Cell Society and UK Thalassaemia Society are

both members of the organisation. The

meeting, which was also attended by Baroness

Gale, Chair of the APPG on Parkinson’s Disease,

Catherine McKinnell MP, Chair of the APPG on

MS and a large number of other stake

-holders, provided an opportunity to discuss

how the proposed NHS reforms will affect

patients with rarer conditions such as sickle cell

disease. By working as part of this coalition, the

Sickle Cell Society is making sure the voice of

sickle cell patients is heard during the Health

and Social care reform process, which is

currently underway.

The Society would like to thank Political

intelligence for their excellent support as the

AAPG Secretariat.

Sickle Cell Society | News Review18 | APPG update

APPG Chair Diana Abbott, MP

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 16

Sickle Cell Society news review | 19News Review | Sickle Cell Society

Prescription Prepayment Certificate (PPC)

You can save money by buying a prescription

prepayment certificate (PPC) if:

• you currently pay for your prescriptions

• you are likely to need several prescriptions

throughout the year

For example, you may find it cheaper to buy a

PPC if you need to pay for more than 4

prescription items in 3 months, or more than 14

prescription items in 12 months.

You can only buy a PPC for your own

prescriptions.

A three month PPC, which will cover all

prescriptions for three months, will cost you

£29.10

A 12 month PPC, which will cover all prescriptions

for a year, will cost £104.00.

If you want, you can choose to pay for a 12-

month PPC by 10 monthly Direct Debit

instalments. This means you would pay £10.40

per month for ten months. This would cover the

costs of all prescriptions for one year.

(NB If you pay using the direct debit option you

are entering into a commitment to pay all the

instalments. If you use the PPC after failing to

pay an instalment you may have to pay a

penalty charge.)

The PPC cannot be issued until the first Direct

Debit instalment is paid.

You can apply for a PPC:

• On-line at www.nhsbsa.nhs.uk/healthcosts

• Telephone: 0845 850 0030

• By filling in form FP95, available from your

pharmacy. The form tells you what to do.

For other enquiries about applications for PPCs,

please ring 0845 850 0030. Information can

also be provided in other languages.

Listen up!Commissioningis on the way

In the White Paper ‘liberating the NHS’ (2010)

the new Government announced a new

Health and Social Care bill which will change

significantly the way NHS services are

commissioned. PCTs will be phased out and

in their place Clinical Commissioning Groups

(CCG) which will commission all health services

with the exception of those commissioned

directly by a new Specialised Health Services

from April 2013. Specialised Commissioning

Group (SCG ) will have their own budget to

commission services according to DH

Specialised Services national definition Set ( A

list of services nationally recognised as being

Specialised ). Both CCG and SCG are the

responsibility of the NHS Commissioning Board.

According to The NHS Act 2006 “ All statutory

NHS organisations are under legal duty to

involve patients and their representatives in

decisions about services”. Therefore, Public and

Patients Engagement (PPE) has an important

role to play in commissioning decision at each

of the three points in the cycle namely:).

Strategic Planning; Procurement; Management.

The Sickle Cell Society is represented on the PPE

steering group of The London Specialised

Commissioning Group – as well as the National

Specialised Commissioning Group.

Mr Patrick OjeerVICE CHAIR, SICKLE CELL SOCIETY

"You do realise, that if you're both positive,

Your baby won't have long to live"

A statement I just couldn't believe.

What should I do? How dare she!

"You see, you both carry a certain gene,

That doesn't fit in well with the family.

It's painful and it's really sore,

And just living life, would be such a chore".

I thought to myself; surely there is hope to see,

That one day things like this won't be.

But right now I can't make that decision

I'll wait two weeks and see what’s the position

on the blood tests we both took,

just to make sure nothing's overlooked!

An anxious two weeks lay ahead.

I tossed and turned each night in my bed.

"So what you're asking is for me to ABORT my baby

because it has a BLOOD deformity!"

I can't understand. It's part of me!

How could I kill it? How dare she!

The tests came back:-

"Mr, you are negative,

Miss I'm afraid you are positive,

But that's ok, you can live with that.

The baby will survive and I'm happy for that"

(My Sickle Cell Test drama in 1987)

The baby inside me was 5 months old when I

was given this information from a specialist

based in Oxford. I was advised that if we

both tested positive to having sickle cell trait,

our child would have to be aborted even at

this late stage because if I didn't the child

would suffer in the long term! I still remember

the journey and the doctor's name, even

though my son is now 23 years old, 6'4" and

in his last year at University! How times have

changed. I often wonder if anyone ever took

her advice if they had both been positive - I

shudder to think.

The Result By Julia Titus

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 17

Sickle Cell Society | News Review20 | Fundraising

Land’s End to John O’Groat’s

Tom Bradbury started his journey on Sunday 21st

August at Lands End at 7am. During his journey

he encountered numerous punctures, an

injured knee, broken spokes, a shredded tyre

and the last two days hit by wind, rain and cold

weather that swept across Northern Scotland.

Despite the many obstacles Tom Bradbury

successfully completed the Land’s End to John

O’Groat’s Cycle Ride in just 8 days in aid of The

Sickle Cell Society and raised £2,598.

Land’s End to John O’Groat’s is the furthest

possible distance in the British Isles that covers

almost 1,000 miles in 12 days passing through

stunning and remote countryside in the British

Isles. You will pedal your way through Cornwall,

Dartmoor and north along the Welsh border,

skirting the Lake District into Scotland, via

lochs and mountains to the North coast and

John O’Groat’s.

For further information and to book your

challenge for 2012 please call Discover

Adventure on 01722 718 444 or visit

www.discoveradventure.com.

FUNDRAISING

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 18

Fundraising | 21News Review | Sickle Cell Society

Run for us in 2012

As the country prepares for the London 2012

Olympics, now is the right time to book

yourself in for a sporting event and be part

of a historical and memorable year in London.

British 10K London Run

Next Year is a special year as it will be the 12th

anniversary for the British 10K Run and much of

the race course will be used for both men’s

and women’s Olympic 2012 marathons!

Please visit www.thebritish10klondon.co.uk for

further information and to view the fantastic

race course which will be used for the London

2012 Olympics.

The Sickle Cell Society has 18 places available

for the British 10k London Run which will take

place on Sunday 8th July 2012 starting at

9.35am. You can walk, jog or run the route as

long as you finish the course within 2 hours. The

race is free to enter through our charity but we

request all participants to raise a minimum of

£300 in sponsorship. Each runner will receive a

Chip Timing, Official Race Photograph, Finishers

Medal, T-Shirt, a Goody Bag, a Certificate and

will have the opportunity to meet and mingle

with the team at a local venue after the race.

Nike Run to the Beat

Nike “Run to the Beat” is Half a Marathon with a

difference. A huge array of DJ’s perform on the

day, with 14 Music Stages scattered around the

course so you can Run to the Beat! The course

is 13 miles, which starts and finishes at the

famous O2 Arena and the route takes you

through the Royal Arsenal Barracks and the

stunning Greenwich Park. You can walk, jog or

run the route as long as you finish the course

within 3.5 hours.

The Sickle Cell Society has 10 places available

for the Nike “Run to the Beat” Half a Marathon

taking place on Sunday 21st October 2012

starting at 9.45am. Each runner will receive a

Chip Timing, T-Shirt with your running number,

race pack and a Certificate.

Please contact Ms Kalpna Patel, Fundraising

Manager on 020 8963 7793 or email

kalpna.patel@sicklecellsociety.org for further

information and a booking form.

JustTextGiving

It costs the Sickle Cell Society approximately

£3,600 each quarter to produce this newsletter.

If you found this newsletter informative then

please donate now so that we can continue to

provide news right to your doorstep.

Donate now by using your mobile phone, text

NEWL11 and the amount you wish to donate

i.e. £2, £5 or £10 and send to 70070. For

example if you would like to donate £10 then

just type NEWL11 £10 and text to 70070. ,

You will then be given the opportunity to add

Gift Aid, meaning The Sickle Cell Society could

benefit an extra 25%.Your donation will be

deducted from your mobile phone credit, or

added to your monthly phone bill. This service

is provided free to us thanks to JusttextGiving

by Vodafone. For further information, please

visit www.justtextgiving.co.uk.

To reach our target, we need 360 people to

donate £10 each, 720 people to donate £5

each or 1,800 people to donate £2. Every

penny counts so please donate whatever

amount you can.

Thank you for your generosity and your help in

keeping this newsletter alive.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 19

Sickle Cell Society | News Review22 | Society news and events

The Sickle Cell Society governance team

PRESIDENT & PATRONS

President:

Mr Michael Parker CBE, FCCA

Patrons:

Professor Elizabeth Anionwu CBE

(Co-founder Sickle Cell Society)

Mrs Sherlene Rudder MBE

(Co- founder Sickle Cell Society)

Mrs Millicent Simpson

(Co-founder Sickle Cell Society)

Baroness Floella Benjamin OBE, DL of

Beckenham

Lord Paul Boateng of Akyen

Sir William Doughty

Mr Derrick Evans

Mr Lenny Henry OBE

Dr. Nola Ishmael OBE

Mr Clive Lloyd OBE

Mr Trevor Phillips OBE

BOARD OF TRUSTEES

Anne Welsh BSc, MSc (Chairperson)

Mr Patrick Ojeer (Deputy Chairperson)

Ms Samantha Cumberbatch, (Vice Secretary)

Mr Junior Kebbay (Company Secretary)

Mr Babatunde Akintola BSc, MSc, (Treasurer)

Mr Kingsley Ibeke (Vice Treasurer)

Ms Sally-Ann Ephson

Mr Joseph Ezeakunne

Mr Kye Gbangbola MBA

Mr Korku Mifetu

Mr Narcisse Kamga

Mr Foluso Dawodu

Chief Executive:

Dr. Philip Nortey CChem , FRSA

MEDICAL ADVISORS

Dr Nellie Adjaye

Professor Dame Sally Davies CMO

Dr Mark Layton

Dr Norman Parker

Dr David Rees

Dr Ade Olujohungbe

Dr Phil Darbyshire

Dr Allison Streetly

SCIENTIFIC ADVISORS

Dr Mary Petrou

Professor Simon Dyson

Dr Kofi Anie

COOPTED BOARD MEMBERS

Ms Lucreta LaPierre MBE

Dr Joan St. John GP

Ms Mona Adam

Information Quality StatementThe Sickle Cell Society adheres to appropriate

standards in the production and

dissemination of information:

The Sickle Cell News Review is an open forum

to individuals and interested groups and

organisations. Therefore opinions and ideas

expressed by authors are not necessarily

those of the Sickle Cell Society. However, all

patent information relating to health and

social care in the news review has been

produced in accordance with the

requirements of the information standard

to which the Sickle cell Society is accredited.

The above said, information of a medical

nature from us is always screened through our

traditional grading system (p9, Standards for

the Clinical Care of Adults with Sickle Cell

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

Grade A (highest level of confidence):

statement is backed by at least one

randomised trial as part of the body of the

literature of overall good quality and

consistency addressing the specific issue;

Grade B: statement is backed by well-

conducted clinical studies but no

randomised clinical trial on the issue;

Grade C (lowest level): statement is backed

mainly by expert opinion, albeit of respected

authorities.

Finally, we would advise patients to always

refer to their medical doctor on matters in

relation to their Healthcare.

SICKLE_CELL_SOCIETY_Pages_12/11 14/12/2011 08:14 Page 20

News Review | Sickle Cell Society Sponsors and Donations | 23

DonationsDonations of £200 and over From 26 May 2011 to 25 November 2011

Payroll Giving....................................................................................................£21,185.61Online Giving ...................................................................................................£17,416.00The Thames Wharf Charity - Tosan Popo ............................................................£4,000.00Corelogic Ltd - Brent Council .............................................................................£2,500.00Daniel Chandler - In Memory of Michael Mensah.............................................£1,670.00Southgate Lodge 1950 - Bro Steven Rose..........................................................£1,500.00Tony Excell - Charity Dinner and Dance .............................................................£1,350.00Mayor of Lambeth Welfare Fund - Dr Neeraj Patel .............................................£1,127.56Lucreta LaPierre..................................................................................................£1,112.80Darren Hicks & Lisa Richards-Everton - Charity Football Match .............................£881.75St Luke with St Bartholomew - Sally-Ann McDowell .................................................£780.00R J Poutch - Leicester to Skeggness Cycle Ride 85 miles.....................................£764.00Edgar Cornelius - EMC Promotions Dinner & Dance 'The Private Affair'..................£711.59Mayor of Rugby Borough Council Mr Don Williams - Charity of the Year ...............£699.10Mark Boden - Leicester to Skeggness Cycle Ride 85 miles ...................................£536.18George & Lorna Blackwood - In Memory of Dear Daughter Carole Parker ...........£530.00Epworth Lodge - Anderson Seale Esq ...................................................................£510.00Sir William Doughty ...............................................................................................£500.00Tom Bradbury - Lands End to John O'Groats Cycle Ride ......................................£500.00South Thames College - Mary Schramm ..............................................................£500.00Queen Anne's School ...........................................................................................£447.10RBS Mortgage Operations -Nick Stagg Charity Sponsored Walk ...........................£413.60Elizabeth Anionwu - British 10K London Run...........................................................£400.00Express Finance (Bromley) Ltd - Catherine Levett ..................................................£363.95Happy Child Nursery - Tracey Storey .....................................................................£352.16C V Lindo & Cricketers ..........................................................................................£312.00Sandra Sutton - Sponsorship..................................................................................£302.00O C Ogbonna ......................................................................................................£300.00St Bartholomews School - P K McPartland .............................................................£300.00A A Yamson - Kings and Queens ..........................................................................£254.00C O Sule................................................................................................................£250.00Farrer Co - Sue Shale ...........................................................................................£250.00Jonathan Cox - Retirement Collection Donation ..................................................£250.00Pride of Islington Lodge No. 3994 .........................................................................£250.00The Guild of St. Barnabas ......................................................................................£250.00CMC Charity Fund - Jacqui Williams.....................................................................£245.50St Martin's Church - Leeds .....................................................................................£244.89Relief Chest Scheme - Aldwych Lodge.................................................................£234.80The Wheel Tapper Pub - Sarah Harrison.................................................................£211.49Mambo City - Robert & Jean White .....................................................................£208.33Co-Operative Funerals - Andrew Bennett..............................................................£207.26Metropolitan Police - Vicki Henwood (In Mem. of Abul Koroma) ...........................£205.00Great Big Small Charity Car Draw Raffle - The Foundation for Social Improvement......£204.00Celesche Church .................................................................................................£200.00Oluwaseyi Barber - Charity Skydive........................................................................£200.00H Amed ................................................................................................................£200.00The Harrow & Wealdstone Ass. - Esther Roberts .....................................................£200.00

The Sickle Cell Society would like to thank all those who have donated. Please notewe have only mentioned donations of £200 and over as space would not permit usto mention every donation.

The Sickle Cell Society is grateful to the followingsponsors

Novartis Pharmaceuticals UK Ltd

Department of Health

London Councils

Roald Dahl’s Marvellous Children’s Charity

SICKLE_CELL_SOCIETY_Cover_12/11 14/12/2011 08:09 Page 4

SCS News Review

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

Please send your comments toinfo@sicklecellsociety.org

Sickle Cell Society

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

Editors Carlotta Olason, Anne Welsh,

Dr. Philip Nortey, Dr. Asa’ah Nkohkwo,Iyamide Thomas, Kalpna Patel,Oluwaseun Hephzibah and Paul Lewis

www.sicklecellsociety.org

About the Sickle Cell Society• Sickle Cell Awareness month in the UK is in July

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

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

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

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

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

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

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

The Sickle Cell Society, December 2011, 8th Edition, NRNext planned review date June 2012

Follow SickleCellUK on Twitter

Add Sickle Cell Society UKto your Facebook

SICKLE_CELL_SOCIETY_Cover_12/11 14/12/2011 08:09 Page 1