annual review 2011 - cclg

Children’s Cancer and Leukaemia GroupCaring for children – curing their cancer

Registered Charity No: 286669 www.cclg.org.uk

Annual Review 2011

2 CCLG ∙ Children’s Cancer and Leukaemia Group ∙ Annual Review 2011

CCLG Key Achievements CCLG Key AchievementsCCLG Mission Statement

The CCLG is committed to research and development in the treatment of cancer in children and younger teenagers, the ultimate goal of which is to maximise cure while minimising the early and late side effects of treatment.

The mission statement of CCLG is:

To promote and improve on the best standards of care for children and younger teenagers with cancer and leukaemia by bringing together all relevant healthcare professionals in the British Isles to:

nn Advocate excellence and equity of access to cancer care

nn Promote research and development

nn Advise governments and other bodies

nn Form networks of colleagues with shared interests in cancer types and aspects of care

nn Share and guide best practice

nn Advance education, training and professional development

nn Produce information for patients and families

nn Raise funds to support these activities.

Patrons:Mr Peter Bone, MPProfessor Sir Robert BurgessProfessor Sir Alan Fersht, FRSProfessor Sir Alec Jeffreys, FRSBaroness Masham of IltonLord Taylor of Goss MoorMr Sam Waley-Cohen

CCLG Trustees:Dr Dan Ford, CCLG Executive/TreasurerSir Peter DixonMrs Susan Hay (from July 2011)Mrs Lucy Hiley (from October 2011)Mrs Gill Thaxter Mrs Rachel Wilcox (Chair of Board of Trustees)

CCLG Executive:Dr Mark Gaze, ChairmanDr Martin English, SecretaryDr Dan Ford, TreasurerDr Phil Darbyshire (to May 2011)Professor Faith Gibson (from September 2011)Dr Juliet Hale (to July 2011)Dr James Nicholson (from September 2011)Dr Angela ThomasProfessor Josef VormoorProfessor Sue Ablett, CCLG Executive Director, ex officioMr Chris Gibbs, NACCPO Chair, ex officio (to December 2011)

CCLG Coordinating Centre:University of Leicester3rd Floor, Hearts of Oak House9 Princess Road WestLeicester LE1 6TH

Tel: 0116 2494460Fax: 0116 2494470Email: [email protected]: www.cclg.org.uk

Bankers and Auditors:HSBC Bank, LeicesterPKF (UK) LLP, Leicester

Production of this Annual Review was made possible by

a donation from the Forum of Private Business

CCLG ∙ Children’s Cancer and Leukaemia Group ∙ Annual Review 2011 3

CCLG Key AchievementsMessage from CCLG Chairman

charities, an accountant who is employed by a hospital charity, a lawyer for a bank, and a retired NHS Foundation Trust Chairman. The Executive is confident that this broad skill-mix will strengthen the financial management of the CCLG Charity.

CCLG Website:The new website has been launched, with members’ and public sections. There has been a very positive response, not just about it’s contemporary look and ease of navigation, but more importantly the added functionality. The range of new features is set to grow over time.

Fundraising:Fundraising is necessary to replace reliance on previous Cancer Research UK grant income and the centre levy as the main sources of income for existing CCLG activity. It is essential if the CCLG is to fulfill its aspirations to expand its activities in education and training, clinical practice support and development, and research and academic endeavour. The appointment of a dedicated fundraiser to support the fundraising role of existing staff has been agreed. There are now definite plans for a major fundraising event in September 2012: Emily’s Big Walk.

So in summary, the Executive, supported by the loyal secretariat at the Coordinating Centre, has achieved a lot in 2011, but it is not complacent as more needs to be done in the coming year to complete the transition from the old CCLG to the new, multiprofessional association: caring for children – curing their cancer.

Clinical treatment guidelines:A working group has been established to create a system for the development of guidelines to a standard which will be approved by NHS Evidence. This process of external recognition will give a degree of harmonisation to previously variable CCLG Clinical Guidelines, and give them greater credibility.

CCLG Tissue Bank:The move to a centralised national Tissue Bank is well in hand, and the Executive is now exploring ways of increasing the use of the Bank, perhaps by funding some carefully selected translational research projects.

Parent/patient information:This aspect of CCLG work has been winning prestigious awards for years, and now we have secured recognition by The Information Standard. This rigorous process of approval ensures that our processes of production and review are carried out to the highest standards, and is a kitemark of quality.

Friends of CCLG:Friends of CCLG is now an established reality. Its first meeting held in May 2011 had a mix of lay and professional speakers. It was well attended, and highly rated, and will become an annual fixture in the CCLG calendar.

Board of Trustees:The Board is now complete, with six members, only one of whom, is a doctor. The other five have a range of backgrounds – two parents with experience of having established and run successful children’s cancer

2011 has been a busy year for the Executive and secretariat, but we can

see that substantial progress has been made towards meeting the aims set out in last year’s Annual Review and Accounts.

Multiprofessional membership: The CCLG is now open to non-medical healthcare professionals. Our membership comprises a wide range of nurses, pharmacists, radiographers and other allied health professionals, as well as doctors in different disciplines, and so is much more representative of the team which cares for children and younger teenagers with leukaemia and cancer. We now have Faith Gibson, a leading nurse, on the Executive.

Academic paediatric oncology:Following an initial meeting with wide stakeholder representation we have surveyed the academic infrastructure at CCLG centres. With the support of the National Cancer Research Institute, a working group is developing a national strategy to promote academic paediatric oncology.

Mark Gaze, CCLG Chairman


CCLG Highlights

Dawn of a new era

A new era dawned in 2011 as CCLG welcomed its first non-medical members, so opening up CCLG to healthcare professionals of all disciplines involved in the care of children with cancer. Professor Faith Gibson, a senior nurse, was subsequently elected to join the Executive.

Award winning publications2011 has been a tremendously successful year for our Publications Committee.

March saw a special edition ‘Best of Contact’ produced to mark the 50th issue of Contact. Based around the cancer journey, ‘Best of Contact’ gave us the opportunity to feature again some of the many wonderful articles and photos that have appeared in previous issues.

A number of booklets and leaflets have been reprinted in 2011. We are particularly proud of our new booklet ‘Sport and Exercise for Children with Cancer: A Parent’s Guide’. Funded as a result of the 2010 Virgin London Marathon run by CCLG Executive Director, Sue Ablett, this colourful and beautifully illustrated booklet, contains a wealth of practical information.

CCLG has a track record of awards under the annual British Medical Association Patient Information scheme. Out of 200 entries submitted we had one booklet Commended (Helping your child to eat) and one Highly Commended (Managing Symptoms at Home: Palliative Care Information for Families). We were thrilled then when our Palliative Care booklet was announced runner up to the BMA Patient Information Resource of the Year – the first time a runner up has been selected!

CCLG rounded off a successful year for publication activity by achieving accreditation under the Information Standard. This means that CCLG has been certified as a provider of high quality health and social care information, and can display the Information Standard quality mark on all our publications.

In December 2011 CCLG was awarded a grant of £3,000 from The Light Fund to support production of a series of cards for children and young people with cancer to hand out to school and other friends. Produced through the Publications Committee, the idea of the cards is to provide answers to some of the questions that inevitably arise, but also to help friends with ideas of what to do or say.


CCLG Highlights

2011 McElwain Prize

Congratulations to Jennifer Lynch of Dublin who was awarded the 2011 CCLG McElwain Prize for her abstract entitled ‘MiR-335 functions as a tumour suppressor in neuroblastoma cells through direct targeting of rock1, mapk1 and lrg1’.

International Paediatric Oncology Society Meeting 2012

CCLG is hosting the Annual SIOP Conference in

London in 2012. This is a prestigious international

event, attended by around 2,000 delegates

(clinicians, nurses, parents and survivors). A

competition to design a logo for the conference

attracted some stunning entries. The winning entry,

by Alice Loosemore, aged 15, from Devon, who had

been successfully treated for a brain tumour, is now featuring on all the

publicity material for the Conference.

First ever CCLG Family Day

The first ever CCLG Family Day, organised jointly with the Royal Society of Medicine (Oncology Section) took place on 11th May. Attended by around 80 delegates (parents, survivors, healthcare professionals and charity representatives), the audience was treated to some excellent presentations, ranging from new drug development, proton therapy and international collaboration in clinical trials. Some of the most powerful presentations came from the parents themselves.

Adam’s Hats merges with CCLG

The charity, Adam’s Hats, set up in 2002, stimulated international research into adolescent and young adult neuroblastoma, and helped to raise awareness of psychosocial support for children with cancer and their families through a number of partnership projects. In 2011 the Trustees of Adam’s Hats decided that the Charity’s work would be better developed and supported through a larger and broader-based partner. The majority of activities of Adam’s Hats now continue under the auspices of CCLG. Residual funds have been transferred to CCLG although supporters of Adam’s Hats will continue fundraising in Adam’s name. As part of the merger, CCLG is committed to ensuring an Annual Adam Hay Lecture. The Inaugural Adam Hay Lecture, was held in May at the Royal Society of Arts. We are delighted that Susan Hay, Adam’s mother, has become a Trustee of CCLG (see page 13).

New CCLG website launched

The new CCLG website went live in October. Feedback from the public and members has been extremely positive. The site contains a wealth of information. The greatly expanded ‘Support Us’ section contains ideas on many ways to support CCLG. The new Family Focus section contains inspirational stories. The Publications catalogue is easy to navigate and attracting a large number of hits. Here are just some of the comments:

“One of the best charity websites going!” “All the information is easy to find and so well presented!”“Lots of information for everyone!”


CCLG Core Activity

Renal Tumours of Childhood

This was the subject of an excellent meeting organised by the CCLG Renal Tumours Interest Group. Held in March at the Royal Society of Medicine, the meeting focussed on: the genetics of renal tumours; state of the art contributions from the diagnostic specialties of radiology and pathology; treatment options with surgery, chemotherapy and radiotherapy; the treatment of relapsed Wilms tumour; the challenges of managing adolescents with kidney cancer and, finally, late effects, their causes and management, and the principles of survivorship.

Tissue Bank Education Day

To mark the official launch of the CCLG Central Tissue Bank, located at the Newcastle Biomedicine Biobank, all personnel involved in tissue banking throughout the

network of centres, came together in July. The day covered practical aspects of sample storage and transfer, as well as presentations from researchers based on use of samples from the Bank. This will now become an annual event.

Late Effects Group

The first CCLG Late Effects Education Day was held in May. The event was well attended with a range of professionals, with varying experience in late effects, all keen to learn from each other about this evolving field. The programme featured an interesting case history, illustrating the far reaching challenges faced by survivors of cancer at all ages. Other sessions included: fertility, late effects of radiation therapy, endocrinology and bones as well as an update on the British Childhood Cancer Survivor Studies, as well as one showing how

‘cure is not enough’ and looking at the importance of functioning as a mature adult having survived cancer as a child or young adult. The keynote and final speaker, Dr Gill Levitt, spoke on ‘The Heart of the Matter’, looking at cardiovascular disease.

Much of the day-to-day activity of CCLG is devolved to a series of different groups, based on tumour type, discipline, or area of activity. Here we reflect some of the core activity in support of the CCLG Objectives and carried out by those Groups.

Education is an important feature of CCLG, and a number of groups have held Education or Study Days throughout the year.

As mentioned on page 4, In 2011 CCLG widened its membership to include healthcare professionals of all disciplines working in the area of childhood cancer. This has been positively received and the number of new members joining from the allied healthcare professions is very encouraging. The two national meetings, held in January and July have been well attended and illustrate the dynamism of CCLG. The programme for the Summer Meeting in Newcastle really summed up the remarkable achievements, and the efforts of so many over the years in the cause of childhood cancer. There was a real sense of pride as the Millennium Bridge first tilted, and was then lit up in corporate colours, as a tribute to CCLG.


CCLG Core Activity

Proton therapy

Proton therapy remains an extremely important issue for all paediatric clinical oncologists. The overseas referral programme has now been running since 2008 and is generally working well. Members of the CCLG Radiotherapy Group play a key role in the UK Proton Panel. Buy-in to the overseas referral system by the UK paediatric radiotherapy community has been very positive. This arrangement is not sustainable in the longer-term, however, and the decision on a UK proton beam therapy service in England is now awaited.

International collaboration

International collaboration has always been an important part of CCLG activity. The Histiocytosis Interest Group has successfully bid for the Histiocyte Annual Meeting to be held in the UK for the second time in five years. The meeting will take place in London later in 2012. Dr Nanduri, chair of the Group, was a guest speaker at the International Nikolas Symposium – an annual meeting, bringing together scientists, pathologists and clinicians in Athens to search for a cure for the histiocytoses. A meeting hosted at Great Ormond Street in February was focussed on collaboration between clinical and laboratory teams, and between different countries.

Paediatric Oncology in Developing Countries

The annual meeting of the CCLG PODC Group took place in November and covered just some of the exciting projects around the world with which PODC group members are involved. Delegates heard about personal experience and problems treating children with ALL in Chandigarh, India, and Myanmar, as well as the benefits of use of mobile phones as an increasingly useful tool for follow up of patients with Burkitt’s Lymphoma in Cameroon.

Supportive Care Networking Day

September saw the first multidisciplinary study day organised by the CCLG Supportive Care Group. The meeting, held at the Royal College of Nursing, was well attended by delegates of all disciplines, and from all over the country. The programme reflected the range of activity of the Supportive Care Group and included presentations on: infection-related work; nausea and vomiting and nutrition; supportive care in the Teenage and Young Adult group. The day ended with an open discussion about the future of Supportive Care research. This too is likely to become an annual event.

Liver Tumours

The CCLG Liver Tumour Interest Group met in October for an education day, dedicated to discussion about providing written guidelines for paediatric liver tumours for which there is no clinical trial open. Work on production of guidelines will commence in the near future.

Neuroblastoma Research Day

A very successful neuroblastoma research day, jointly organised by the CCLG, Neuroblastoma Society, and SIOPEN, was held in October in London. The day included sessions on immunotherapy, gene and microRNA expression signatures as prognostic indicators, and new treatments, all presented by national and international experts. Young investigators were given the opportunity to present their work. The meeting provided a great opportunity to network and collaborate with UK and international investigators.

Dr Rod Skinner and Professor Faith Gibson

Market scene, Myanmar


Summary of Finances

AnALySiS oF inCoME 2011 (£514,729) 2011 2010

Restricted Donations £89,363 £93,293General Donations £106,722 £165,233Legacies £30,779 £8,639Subscriptions £203,784 £225,111Investment Income £15,244 £821University of Leicester infrastructure support £37,500 £50,000Charitable activities £31,337 £35,770 £514,729 £578,867

AnALySiS oF ExPEndiTurE 2011 (£425,357) 2011 2010

Support for Research £53,021 £134,684Information for patients and families £79,375 £95,721Governance costs £15,620 £13,661Cost of generating funds £43,435 £41,188Professional Association activities £213,246 £268,429 £404,697 £553,683

Restricted Donations 17.36%

General Donations 20.73%

Legacies 5.98%

Subscriptions 39.59%

Investment Income 2.96%

University of Leicester Infrastructure Support 7.29%

Charitable Activities 6.09%

Support for Research 13.10%

Information for patients and families 19.61%

Governance costs 3.86%

Cost of generating funds 10.73%

Professional Association activities 52.69%

CCLG income 2011

CCLG Expenditure 2011

on this page we feature an extract from our audited accounts for 2010-2011. if you would like a full copy of the accounts, you can either download them from the Charity Commission

website (by inserting our charity number 286669 in the search box) or from the CCLG website.

Read more about some of our amazing fundraisers on pages 10 and 11. To find out more about the valuable work being carried out by CCLG, see pages 4 to 7.

If you wish to fundraise for CCLG, either contact us on [email protected] or visit the Support Us section of our website (www.cclg.org.uk).


Summary of Finances

Letter from Chair of Board of Trustees

The end of a year is traditionally a time to reflect on how far we have come in that year. For the fledgling Board of Trustees, which has grown to its full strength of six during this year, it has been quite a journey: I have learned much about CCLG and its work, and also the challenges that it has faced and still faces.

The charity’s role is to support the Executive financially to enable them to achieve the objectives set out on page 2. The financial information included here shows where funds come from, and how they are applied. In these tough economic times we are pleased to have achieved a surplus for the year, and our thanks go to all our fundraisers – not just those featured here on pages 10 and 11, but every person who has helped us in however small or large a way.

Another major financial event this year has been the merger with Adam’s Hats (see page 5) which is reflected in the increase in restricted fund income for the year. It is a pleasure to welcome Susan Hay as a Trustee of CCLG and her contribution to the Board of Trustees will, I am sure, be very valuable.

We remain fully committed to supporting research, and are grateful to those who have fundraised for specific areas of activity. Our “ringfenced” funds are very healthy, and we plan to solicit applications for grants, specifically for projects utilising the samples in the centralised national Tissue Bank.

We have reviewed the payment made to CCLG by centres and are now seeking to cover the costs of our portfolio of patient and family publications from those centres. Income from individual subscriptions helps to support the activities of the membership, which encompass our aims in fostering specialist networks, sharing best practice and advancing education. Our growing and widening membership, covering all the disciplines involved in the care of children with cancer, helps with the exchange of ideas and builds understandings between the various disciplines.

The UK will this year host the annual SIOP Congress and CCLG is supporting the event through membership of the Local Organising Committee. This is the largest paediatric cancer meeting in the world, and we are proud to be involved.

Providing information for patients and families is a key element of CCLG’s work and I am delighted that we now have accreditation under the Information Standard. It is a wonderful achievement, and a reflection on the dedication and hard work of the Publications Committee and the staff of CCLG. We now provide more than 30 booklets, as well as the popular quarterly Contact magazine. The redesign on the website has also involved a great deal of hard work – but the new online face of CCLG was worth it. We hope it will encourage more professionals to join as members, and boost our public profile.

And we need to become more visible, to encourage more people to support us with events and fundraising, in order to bring in the funds which support our work. We have no permanent funding and rely on our fundraisers. So during 2012 we aim to appoint a professional fundraiser to develop our fundraising strategy and increase support to all who raise money for us.

Emily’s Big Walk

We hope you have already seen information on this series of walks in September 2012. This is a national series of events, based on the network of centres, varying in length and each with its own distinct feel: we hope that as many members and supporters as possible will get involved. More details can be found on our website at http://www.cclg.org.uk/events/emily-s-big-walk-2012

rachel Wilcox


CCLG Key Achievements CCLG Key AchievementsCCLG Fundraising

CCLG is a registered charity and is heavily reliant on the growing number of individual and corporate fundraisers who work tirelessly to support our work. We can’t name everyone. The following are just some of the many people who have given their time, and sometimes indulged in quite bizarre activities, to raise funds for CCLG.

In May Jerry Bailey, Steven Bartlett and nick Baker raised over £16,000 for three children’s cancer charities by riding from John O’Groats to Land’s End on quad bikes, in memory of Jerry’s son Rob who lost his fight against cancer in June 2008, aged 13. They had a wonderful time on the trip - mist and rain at both John O’Groats and Land’s End but enjoyed good weather and spectacular scenery in between. The journey involved both on and off road travel. Great fun for all involved and a tremendous achievement! The monies received by CCLG have been added to funds already raised in memory of Rob and will be channelled into research for Wilms tumours. u

t Our runners and skydivers have been particularly supportive throughout 2011. July 2011 saw the first outing of our new CCLG branded running vests in the British London 10K, and a record number of people running for CCLG. A group of thirty, running in memory of their friend Tom Scrivner, raised £6,000 alone! Matthew Meader (pictured) successfully competed in the Admiral Swansea Bay 10k. The 2011 Reading Half Marathon was a first for CCLG, with Joaquim Varela being the first to join our team. Imelda Baldwin and Jill Saunders were astounded by the tremendous support and generosity of their village, raising over £2,200. Amanda Bailes and team from PricewaterhouseCooper completed the Birmingham Half Marathon, raising over £16,000. Sandra Tichanovaite was so pleased with her first skydiving experience that she is planning to have another go – this time in Brazil!

Carl Stevens and Tarek El-Aalem couldn’t resist the idea of supporting CCLG by participating in the London to Paris Bike Ride. Certainly not for the faint hearted, this tough challenge covers almost 500km over 5 days, finishing at the Eiffel Tower. Not only was it a great experience but collectively they raised almost £3,000. The CCLG vest was well received. “We made sure we took a few shots displaying our shirts with pride” said Carl! q

Jason Mealey was inspired to support CCLG after his friend’s daughter died of cancer. His first fundraising effort was participating in the Blenheim Triathlon in June. Then in September he and a friend took part in the Wacky Rally. This ‘interesting’ event involved buying a car for £300, doing it up to the Knight Rider theme, then travelling from the start in Lille, to Prague in 5 days, via Italy, Switzerland and Austria completing tasks along the way. The person with most points wins! “An adventure and one of those lifetime experiences” said fellow traveller, Geoff Page. q


CCLG Key AchievementsCCLG Fundraising

Supporting research

CCLG is able to meet the requests of donors to ‘ringfence’ donations to support specific areas of activity. Sometimes this may mean that we combine donations from different sources. Rhabdomyosarcoma is one such example, where we have a very loyal band of supporters, contributing very considerable sums, and enabling us to support a number of research activities.

Mathew Sherwood

Paul and Rebecca Sherwood were keen to ensure that any donations received in memory of their son, Mathew, who died in 2006 from rhabdomyosarcoma, were channelled into research into that tumour type. A huge number of donations from family and friends, and from organised events such as non-uniform days at the Jumeirah English Speaking School in Dubai, were received in Mathew’s memory.

Jake Ellis

2011 has been a particularly productive year for Jo-ann and Nick Ellis and their supporters. In October Jo-ann and Nick held their annual Charity Ball to raise funds, in memory of their son Jake. The theme this year was ‘Casino Night’. 166 guests bought tickets for the event which included an auction, hog roast and a raffle, and raised a total of

almost £6,000! ‘Team Jake’ also raised an amazing £3,700 in the annual Keswick to Barrow Walk in May.

Jenni Clarke

Elsie French, Ruth Clarke, and Janet Thompson in Northern Ireland have been raising funds for Rhabdomyosarcoma research for many years since the death of Ruth’s daughter, Jenni. They organise a variety of events including a Victorian day, a formal dinner each November, and a mulled wine and shortbread evening around Christmas.

Georgia Cordery (Georgia’s Teenage Cancer Appeal)

When teenager Georgia Cordery was diagnosed with Rhabdomyosarcoma she started Georgia’s Teenage Cancer Appeal. Georgia died in May 2010 but through a number of events the appeal raised a huge amount. Donations have since been made to a number of charities including, CCLG, to support our work in rhabdomyosarcoma.

Thanks also to…

nn The families of Mima, owen and Jake for allowing their photos to be included in our new Publicity Leaflet.

nn rob Matthews, who over the years has delivered talks on a range of topics, and has always donated the fees to CCLG. (Rob’s granddaughter had Ewing’s 12 years ago, and is now happily married with two children. As Rob says “she is a great example to show that cancer is not necessarily the end!”)

nn All our amazing fundraisers who have so willingly given their time to support CCLG throughout 2011, raising funds in a great variety of ways.

nn All our supporters who make regular monthly donations through Paypal, Virgin Money Giving, Standing Orders and the Give As You Earn scheme, and those who remember CCLG in their wills, including our oldest benefactor, 101 year old Alice Fisher.

Our sincere thanks to each and every one of you for your time, effort and commitment. Your support will help make a difference to the lives of children with cancer and their families.

Whatever you raise remember that no amount is too big, no amount is too small; it ALL makes a difference.


CCLG Patrons

Peter Bone, MP, qualified as a Chartered Accountant, running both a public company and a family business. He was elected Conservative M.P. for Wellingborough and Rushden in 2005, and has held various posts within the Conservative Party, including Association Chairman and Press Secretary. When one of his constituents was diagnosed with Neuroblastoma, he led a debate in the Commons, the final outcome of which was an injection of significant government funds to cover production of another batch of the AntiGD2 antibody.

Professor Sir robert Burgess, a sociologist by training, was appointed Vice Chancellor of the University of Leicester in 1999. He spent some time at the University of Warwick prior to his move to Leicester. During his time at Leicester he has introduced sweeping changes, enhancing the University’s reputation and seeing it enter the top 20 Institutions in many league tables. He has held national roles in a number of organisations, and was knighted in the 2010 New Year Honours.

Professor Sir Alan Fersht, FRS was appointed Herchel Smith Professor of Organic Chemistry at Cambridge from 1988 to 2010. He was Director of the Cambridge Centre for Protein Engineering (UK) from 1990 to 2010. Professor Fersht holds many honorary doctorates from Universities around the world, and has received many prizes and medals. He was elected a Fellow of the Royal Society in 1983. In 2003 he was knighted for his pioneering work on protein science. Now an emeritus Professor, he remains active in research.

Professor Sir Alec Jeffreys FrS, is Professor of Genetics and Royal Society Wolfson Research Professor at the University of Leicester, where he developed techniques for DNA profiling, which are now used all over the world in forensic science and to assist police detective work, and also to resolve paternity and immigration disputes. In 1986 he was made a Fellow of the Royal Society, 1992 Honorary Freeman of the City of Leicester, and in 1994 was knighted for services to genetics. In 2006 he was voted Morgan Stanley Great Briton for the Greatest Briton of the year, winner in the category of Science and Innovation, as well as overall winner.

Baroness Masham of ilton is a crossbench member of the House of Lords, the senior female life peer. Disabled in a riding accident in 1959 and subsequently a champion for causes related to disability, she was created a life peer in 1970. She is an active member of the House of Lords, taking a particular interest in issues surrounding disability, health, and penal reform. Baroness Masham is a keen member of a number of All Party Parliamentary Groups, including the Associate Parliamentary Health Group and the All Party Parliamentary Group on Prison Health. A family member has recently been treated for Neuroblastoma.

Matthew Taylor (Lord Taylor of Goss Moor) was elected as Britain’s youngest MP at the age of 24, in the Truro by-election of March 1987. For 10 years he was the youngest MP in the House, holding various positions in the Liberal Democrats. He announced in 2007 that he would be standing down at the next General Election after more than 20 years as a Cornish MP. In July 2010 he became a member of the House of Lords. He continues to pursue his interest in sustainable communities and the environment. Lord Taylor’s son, Arthur, was successfully treated for a malignant germ cell tumour.

Sam Waley-Cohen – Inspired by the death in 2004 of his brother, Thomas, to cancer, Sam, a successful businessman, has helped raise large sums for charity (namely Tom’s Ward at the John Radcliffe Hospital in Oxford). He is also a very successful amateur jockey, winning two of the biggest races in the jumping calendar in 2011.

CCLG has been very fortunate in the past year with the appointment of distinguished Patrons to support our work.


our Trustees

Sir Peter dixon is the former chairman of UCLH and of the Housing Corporation. His business career spanned running commercial companies as well as spells in the finance sector which he combined with positions in not-for-profit and charitable organisations. “I was attracted to CCLG by the amazing children and parents I encountered at UCLH. Their bravery and cheerfulness in the face of incredible difficulty was something which I found deeply inspiring, as was the care they received from the teams that looked after them. The story of the way in which improvements in treatment have transformed outcomes over the last twenty years is just incredible and helping to take that forward in some small way is an immense privilege”

dr dan Ford is a clinical oncologist in Birmingham, with a speciality interest in radiotherapy for children. He is a member of the CCLG Executive. “As current Treasurer for CCLG, I have very much enjoyed being involved in a group which is really helping clinicians, patients and families in the treatment of cancer. These are exciting times for CCLG and I very much look forward to helping the organisation into the future.”

Susan Hay founded and ran Adam’s Hats, a charity set up following the loss of her son, aged 12, to neuroblastoma in 2002. “At every turn in the road a clinician member of CCLG was actively involved in offering guidance and leadership for the best use of our funds. It was a natural next step to combine resources with CCLG and I am privileged, as part of this process, to transfer my Trusteeship of Adam’s Hats to CCLG. I am hoping to contribute as a patient and family advocate, as well as experience of charity management across several sectors.”

Lucy Hiley is a lawyer and banker. “Having spent several years helping with the governance of a charitable sporting organisation, I was keen to find a charity that could make use of my legal expertise. Although I have no direct prior involvement with CCLG, I absolutely jumped at the chance to join the Board of Trustees – for the opportunity to work with a motivated, engaged and high quality Trustee and executive team, and to be given the chance to support a charity which exists to develop best practice in treating children’s cancer. I am looking forward to being involved with CCLG in a time of continuing transition to help in meeting the challenges of the current financial environment.”

Gill Thaxter has been involved with Contact magazine since its inception, both as a parent and sponsor. “I felt honoured on being asked to become a Trustee for CCLG. As Chairman of the Lisa Thaxter Trust, a Charity set up in memory of my younger daughter, I have worked with CCLG for many years and fully support their aims and objectives. They have contributed so much to the childhood cancer journey, not only to the patients but also the whole family network. The success of CCLG in the past and present has made a real difference to those with childhood cancer. I am proud to be part of their future.”

rachel Wilcox – Chair of the Board of Trustees, Rachel is a qualified accountant who has worked in charities for many years. “My current job, with UCLH Charity, brought me into contact with Dr Mark Gaze, with whom I have worked on projects to raise money for the charity and for children’s cancer research within UCL Hospitals. It is this link which has given me an appreciation of the very different challenges which are posed in treating children with cancer, as opposed to adults, and so I was glad of the opportunity to support the work of CCLG.”

in the course of 2011 we have expanded our Board of Trustees. Here you can read more about our Trustees, including the expertise they bring to CCLG.

CCLG Key AchievementsCCLG Key Achievements


Friends of CCLG

Katherine Greenshields is a survivor, having been diagnosed at the age of 12. She was a member of the CCLG Patient Advocacy Committee. When that Group was disbanded, we were delighted that Katherine chose to continue her involvement with CCLG through membership of Contact Editorial Board. She is a very active, committed and enthusiastic member of the Board. She has personally written several articles for Contact even persuaded her sister to write one. The perspective she brings, as a survivor, both in terms of articles she writes and input to the Contact Board, is invaluable to us. In her own words “Having cancer as a child is a big part of who I am. I’m a survivor and I’m proud of that!” You can read more about Katherine on the CCLG website/Family Focus/Personal Stories.

CCLG has long enjoyed the support of a large number of friends – fundraisers and those who contribute in other ways, such as sitting

on Committees. Early in 2011 we formally launched ‘The Friends of CCLG’ as a means of bringing together existing and new supporters for mutual benefit. In May the first ever CCLG Friends and Family Day was held at the Royal Society of Medicine Attended by

parents, survivors, and a range of healthcare professionals, the day had a stimulating programme, and provided wonderful opportunities for networking and sharing experiences. The second Friends Meeting takes place on 14th May 2012. Our Friends leaflet has just been redesigned. Copies are available from the CCLG Coordinating Centre.

izzy Wilkie began working as an office junior at CCLG (then UKCCSG) during the school holidays back in 2002. University intervened but Izzy maintained an active interest in the work of CCLG, especially as she was studying Pharmacy. 2011 has been a busy year.

Early in 2011 CCLG had charity bugs and wristbands produced to try and increase awareness of CCLG and gain new donors. Izzy arranged a photo shoot for the bugs to capture them at their best! See our website to find out how well travelled they are!

In March Izzy began training in earnest for the British London 10K race. July came round and before she knew it the race day had arrived and she was lined up with 25,000 other runners, standing proud in her CCLG running vest. She thoroughly enjoyed the experience and raised over £400 for CCLG.

The next big event of the year for Izzy was a trip to New York, having volunteered to represent CCLG, at her own expense, at the US launch of The 2012 Rolls Royce Enthusiasts’ Club Yearbook. We look forward to seeing what 2012 brings!

Martin and Liz Vernon first called into the Coordinating Centre about 5 years ago, just after the death of their son, David, from bone cancer. They had raised funds and were keen to support the work of CCLG. Over the years Martin has become a regular visitor, popping in during his lunch-hour, to deliver cheque after cheque. Martin is a keen fisherman and regularly sells his catches, and those of fellow anglers, to raise funds. The family hens also contribute through sales of their eggs. Liz has a regular jam and chutney making production line going, with a good number of regular customers, eagerly awaiting the next batch.

In addition Liz now also supports our Publications Committee by reviewing draft information booklets. This fits well with Liz’s interests and expertise. For Liz it is a rewarding way to contribute and a nice break from jam making!


CCLG Key AchievementsCCLG Key AchievementsCCLG objectives 2012

Advocate excellence and equity of access to cancer care

To work to improve quality, safety and patient experience, in partnership with Friends of

CCLG, as the consumer representatives.

Promote research and development

To promote use of the centralised national CCLG Tissue Bank to facilitate translational

research and to provide opportunities for researchers in training, and to fund research.

Advise governments and other bodies

To use the knowledge, skills and experience of our members to best advantage for

children and younger teenagers with leukaemia and cancer.

Form networks of colleagues with shared interests in cancer types and aspects of care

To foster the work of CCLG Core, Interest and Discipline Groups in education, research

and clinical practice.

Share and guide best practice

To secure accreditation, to the standards of NHS Evidence, of the processes by which

clinical guidelines are produced, so that CCLG Guidelines may be recognised as an

evidence-based, expert consensus.

Advance education, training and professional development

To develop the CCLG website as a tool for widening access to the content of meetings

and professional development, and to create a strategy for the development of academic

paediatric haematology and oncology.

Produce information for patients and families

To produce high quality information booklets for families and others, in line with The

Information Standard, and to ensure their wide availability.

Raise funds to support these activities

To develop, with the Board of Trustees, strategies to ensure the long-term financial

security of CCLG, including an increasingly proactive approach to fundraising.

CCLG Coordinating Centre:University of Leicester3rd Floor, Hearts of Oak House9 Princess Road WestLeicester LE1 6THTel: 0116 2494460Fax: 0116 2494470Email: [email protected]: www.cclg.org.ukRegistered Charity No: 286669

Children’s Cancer and Leukaemia GroupCaring for children – curing their cancer

annual review 2011 - cclg

Documents