Sickle Cell Society Winter Issue

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Issue 8 | Winter 2011

Children’s Holiday

Rest in Peace Sickle Cell

“Listen Up!” The voice of the Sickle Cell Community

Commissioning is on the way

Screening Programme Update

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

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Contents Winter 2011 Chairperson’s Message

03

CEO’s Message

04

Comprehensive care for people living

Children’s Holiday

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 APPG UPDATE

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 visit to the Horniman Museum

02 | Contents

Sickle Cell Society | News Review

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Message from the Chairperson 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

News Review | Sickle Cell Society

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

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 Welsh CHAIRPERSON, SICKLE CELL SOCIETY

Chair’s message | 03

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Chief Executive’s message

Dr Philip Nortey CChem, CSci, FRSA Chief Executive, Sickle Cell Society

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.

“...I am optimistic that next year will bring more opportunities...”

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

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.

04 | CEO’s message

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 FRSA CHIEF EXECUTIVE OFFICER, SICKLE CELL SOCIETY

Sickle Cell Society | News Review

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Comprehensive care for people living with sickle cell disease in England: Department of Health support for a meaningful partnership for the future - Winter 2011 Update

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 peercollaborations, 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, aboveall, 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 overarching 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

News Review | Sickle Cell Society

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

Dr Asa’ah Nkohkwo FRSPH Nationwide Adviser, Comprehensive Care

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 sicklecell 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.

The Society projects | 05

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THE COMMUNITY HUB: ENSURING INTEGRATION & CONTINUITY OF CARE 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 developmentthat 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.

CLIENT A REFLEXOLOGY BENEFITS

CLIENT B SELF MANAGEMENT PROGRAMME HOME CARE CARER’S SUPPORT

SOCIAL SERVICES HOUSING BENEFITS CHILD CARE

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

CLIENT C DRY HYDROTHERAPY MENTAL WELL BEING SOCIAL SERVICES

EMPLOYMENT & EDUCATION

CLIENT E CHILD CARE SUPPORTING PARENTS PROGRAMME

CLIENT D TRANSPORT HOUSING

WHOLE SYSTEM SELF MANAGEMENT PROGRAMMES

NEXT STEPS, CONSULTATIONS & OTHER NEWS Starting with a road-test in the East Midlands, plans are on the way over the coming months, to rollout 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.

DRY HYDROTHERAPY

GP COMMISSIONING CONSORTIA

Community Hub NHS HAEMOGLOBINOPATHY AND RELATED SERVICES

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

MENTAL WELLBEING SERVICES

Follow SickleCellUK on Twitter CARER’S SUPPORT

HOME CARE SUPPORT COMPLEMENTARY THERAPIES

Fig-1 The Model Community Hub Functionality

Chacon, A; Nkohkwo, A; Cavanagh,S. Oct2011

06 | The Society projects

TRANSPORT

Add Sickle Cell Society UK to your Facebook

Sickle Cell Society | News Review

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The Sickle Cell Society Children’s Holiday 2011

By Comfort Ndive - Regional Care Advisor, North London

or pain was promptly well catered for. AnnDeloris 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.

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.

News Review | Sickle Cell Society

Sickle Cell & Thalassaemia Young Peoples Support Group Our meetings are held every second Saturday of the month Time: 1pm-3pm Venue: Croydon sickle cell

& thalassaemia centre 316-320 Whitehorse Road Croydon Surrey CR0 2LE Tel: 07548 700 856/ 07770 238 479/ 020 8251 7259 We would like to encourage all young people aged 13-24 to join us and make a difference as we volunteer our help to impact others.

We love animals

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

CROYDON

Patrons: Dr Mary Clarke, Dr. Kofi Anie,

Ms Charlene White

“A helping hand is sometimes all that is needed” Registered Charity Number 1100120

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.

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.

Society news and events | 07

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COMPETITION • COMPETITION

CAN YOU DRAW?

(For young people ages 6 to 18 years)

We are having a great time

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.

We are so creative

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

The children had lots of fun and their evaluation forms clearly showed they had an exciting time at Woodrow House.

Do you fancy designing the winning pictures for the cover and inside pages of the new edition of the NHS Sickle Cell and 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 Bags so 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 Comfort Ndive dancing with the children

GOOD LUCK! 08 | The Society projects

COMPETITION • COMPETITION Sickle Cell Society | News Review

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“Why is the rain following us?”

- Children Visit the Horniman

By 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.

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!

News Review | Sickle Cell Society

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.

Time for human puppets

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

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

African Worlds

The Society projects | 09

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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)

Keeping to the standard

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.

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.

10 | The Society News

Sickle Cell Society | News Review

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

32nd Annual General Meeting 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.

Novartis Scholarship

Dr Kofi Anie is a Clinical Psychologist was elected scientific adviser for the Sickle Cell Society.

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

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.

Dr Asa’ah Nkohkwo FRSPH , Dr Lorna Bennett and Lewis Thomas a Medical student at The University of Nottingham

Winners: Ms Ayodele Ayoola, Ms Laurel Brumant-Palmer, Mr Ivraldo Manuel Oliveira San, Mr Lewis Thomas

The Floella Benjamin Achievement 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.

Mrs Stephanie Sulliaman, Mrs Cecilia Shoetan and Dr Asa’ah Nkohkwo.

News Review | Sickle Cell Society

The Society News | 11

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UPCOMING EVENTS

THE SICKLE CELL SOCIETY

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

The first Patient & Carer Seminar on Adequacy & Safety of Blood Supply Date:

Wednesday 22nd February 2012 Time:

9am-3:30pm Venue: Governors Hall Complex St Thomas Hospital Westminster Bridge Road London SE1 7EH For more information and registration please contact:

Outstanding Achievement Award

The Health Information Officer

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.

The Sickle Cell Society 54 Station Road London, NW10 4UA Email: info@sicklecellsociety.org Telephone: 020 8961 7795 Sponsored by an unrestricted grant from: CardianBCT to become TerumoBCT

12 | The Society News

Ms Sekayi Tangayi with Anne Welsh

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.

Winner: Pansy Gabriel and Mrs Julie Coker of the Richard Coker Foundation

Sickle Cell Society | News Review

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SERVICE USER NEWS

Rest in Peace Sickle Cell

By Oluwaseun Ololade Obilana 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 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 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 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.

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.

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.

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

News Review | Sickle Cell Society

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.

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SUPPORT GROUP NEWS

Scottish Sickle Cell and Thalassaemia Support Group ...because you are not alone

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.

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.

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.

Thank you.

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.

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

14 | Support group news

Chairperson: Esther Idowu Treasurer: Akeem Akinkunmi

Esther Abiola Idowu

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

Sickle Cell Society | News Review

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Update from the screening programme 10th anniversary and recognition for the programme

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

New publications and training 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.

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/professionalresources

Newborn Outcomes Project 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.

We are also developing a suite of leaflets for people identified as carriers through screening.

News Review | Sickle Cell Society

Service provider news | 15

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Reaching out to the public

Acting up

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.

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.

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

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.

Your blood is special and will help save lives 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

16 | Service provider news

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

Blood and Transplant

Sickle Cell Society | News Review

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APPG UPDATE

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….

CONTACTING YOUR LOCAL MP

WRITE A LETTER TO YOUR 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 format of the letter should be along the following lines:

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.

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.

News Review | Sickle Cell Society

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!

• Write a letter to a local organisation or authority

• FINALLY, PLEASE, DON’T FORGET TO COPY THE SICKLE CELL SOCIETY

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”

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APPG Update - 2011-2012 Programme of Activity

APPG Chair Diana Abbott, MP

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 Haemoglobinopathies (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

18 | APPG update

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.

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.

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 stakeholder 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.

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 patientrelated 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.

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 Society would like to thank Political intelligence for their excellent support as the AAPG Secretariat.

Sickle Cell Society | News Review

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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 12month 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.

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.

By Julia Titus

"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!

News Review | Sickle Cell Society

Commissioning is on the way

(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 Result "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!

Listen up!

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.

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 Ojeer VICE CHAIR, SICKLE CELL SOCIETY

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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.

20 | Fundraising

Sickle Cell Society | News Review

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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.

News Review | Sickle Cell Society

Fundraising | 21

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The Sickle Cell Society governance team PRESIDENT & PATRONS

BOARD OF TRUSTEES

MEDICAL ADVISORS

President: Mr Michael Parker CBE, FCCA

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

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

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

Chief Executive: Dr. Philip Nortey CChem , FRSA

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 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

22 | 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

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The Sickle Cell Society is grateful to the following sponsors Novartis Pharmaceuticals UK Ltd Department of Health London Councils Roald Dahl’s Marvellous Children’s Charity

Donations Donations of £200 and over From 26 May 2011 to 25 November 2011 Payroll Giving....................................................................................................£21,185.61 Online Giving ...................................................................................................£17,416.00 The Thames Wharf Charity - Tosan Popo ............................................................£4,000.00 Corelogic Ltd - Brent Council.............................................................................£2,500.00 Daniel Chandler - In Memory of Michael Mensah .............................................£1,670.00 Southgate Lodge 1950 - Bro Steven Rose..........................................................£1,500.00 Tony Excell - Charity Dinner and Dance .............................................................£1,350.00 Mayor of Lambeth Welfare Fund - Dr Neeraj Patel .............................................£1,127.56 Lucreta LaPierre..................................................................................................£1,112.80 Darren Hicks & Lisa Richards-Everton - Charity Football Match .............................£881.75 St Luke with St Bartholomew - Sally-Ann McDowell.................................................£780.00 R J Poutch - Leicester to Skeggness Cycle Ride 85 miles.....................................£764.00 Edgar Cornelius - EMC Promotions Dinner & Dance 'The Private Affair'..................£711.59 Mayor of Rugby Borough Council Mr Don Williams - Charity of the Year ...............£699.10 Mark Boden - Leicester to Skeggness Cycle Ride 85 miles ...................................£536.18 George & Lorna Blackwood - In Memory of Dear Daughter Carole Parker ...........£530.00 Epworth Lodge - Anderson Seale Esq ...................................................................£510.00 Sir William Doughty ...............................................................................................£500.00 Tom Bradbury - Lands End to John O'Groats Cycle Ride ......................................£500.00 South Thames College - Mary Schramm ..............................................................£500.00 Queen Anne's School ...........................................................................................£447.10 RBS Mortgage Operations -Nick Stagg Charity Sponsored Walk ...........................£413.60 Elizabeth Anionwu - British 10K London Run...........................................................£400.00 Express Finance (Bromley) Ltd - Catherine Levett ..................................................£363.95 Happy Child Nursery - Tracey Storey .....................................................................£352.16 C V Lindo & Cricketers ..........................................................................................£312.00 Sandra Sutton - Sponsorship..................................................................................£302.00 O C Ogbonna ......................................................................................................£300.00 St Bartholomews School - P K McPartland .............................................................£300.00 A A Yamson - Kings and Queens ..........................................................................£254.00 C O Sule................................................................................................................£250.00 Farrer Co - Sue Shale ...........................................................................................£250.00 Jonathan Cox - Retirement Collection Donation ..................................................£250.00 Pride of Islington Lodge No. 3994 .........................................................................£250.00 The Guild of St. Barnabas ......................................................................................£250.00 CMC Charity Fund - Jacqui Williams.....................................................................£245.50 St Martin's Church - Leeds .....................................................................................£244.89 Relief Chest Scheme - Aldwych Lodge.................................................................£234.80 The Wheel Tapper Pub - Sarah Harrison.................................................................£211.49 Mambo City - Robert & Jean White .....................................................................£208.33 Co-Operative Funerals - Andrew Bennett..............................................................£207.26 Metropolitan Police - Vicki Henwood (In Mem. of Abul Koroma) ...........................£205.00 Great Big Small Charity Car Draw Raffle - The Foundation for Social Improvement......£204.00 Celesche Church .................................................................................................£200.00 Oluwaseyi Barber - Charity Skydive........................................................................£200.00 H Amed ................................................................................................................£200.00 The Harrow & Wealdstone Ass. - Esther Roberts .....................................................£200.00 The Sickle Cell Society would like to thank all those who have donated. Please note we have only mentioned donations of £200 and over as space would not permit us to mention every donation.

News Review | Sickle Cell Society

Sponsors and Donations | 23

SICKLE_CELL_SOCIETY_Cover_12/11 14/12/2011 08:09 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

Editors Carlotta Olason, Anne Welsh,

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

www.sicklecellsociety.org The Sickle Cell Society, December 2011, 8th Edition, NR Next planned review date June 2012