Sarcoma UK Annual Report 2015/16 by Sarcoma UK

Sarcoma UK Annual Report & Accounts for the year ended 31 March 2016

The bone & soft tissue cancer charity Registered as a charity in England and Wales (1139869) and in Scotland (SC044260) â&#x20AC;˘ A company limited by guarantee in England and Wales (7487432)

sarcoma UK’s IMPACT 2015/16 Our online GP education module ‘Lumps, Bumps and Sarcomas’ was successfully completed 3,300 times

We had face-to-face contact with over 500 GPs at five education events

We distributed 4,500 patient information booklets, an increase of 33%

We provided support and information by telephone and email to over 300 people

We hit the £1 million milestone in research funding, with 23 projects funded

Our media work reached an audience of 37.6 million, through 264 media mentions

We sent out 760 ‘On the Ball’ GP awareness packs

We provided face-to-face support and information to 550 people at 25 events

10 Downing Street’s Great British Bake-Off for Sarcoma UK reached over 1.75 million via social media

Contents

Chair of Trustees and Chief Executive’s Statement Report of the Trustees: Objectives and activities Achievements and performance Future plans Governance, structure and management Financial review Statement of responsibilities of the trustees

5 6 – 28

Independent Auditors’ Report to the Members of Sarcoma UK

29 – 30

Financial Statements: Statement of financial activities Balance sheet Statement of cash flows Notes to the financial statements

31 – 43

Reference and Administrative Details Acknowledgments

Page

44 45 – 46

Chair of Trustees and Chief Executive’s Statement

This 2015/16 annual report is an important marker of our progress in achieving our goals to transform the landscape for everyone affected by sarcoma. This was the year that Sarcoma UK exceeded the £1 million milestone in our research funding, having invested in 23 high quality projects. The trustees recognise the responsibilities that come with our growth in income and the opportunity to seek answers through research. Therefore, in 2016/17, we will increase our annual award to half a million pounds, our highest ever in a single year. We were delighted to meet over 100 supporters at our Talking Research event in Manchester in June 2015, who heard directly from the researchers that they themselves had helped fund. We are proud to have commissioned the National Sarcoma Survey 2015 - the largest and most comprehensive survey of sarcoma patients’ experiences in the UK. This insight provided us with robust evidence of where diagnosis, treatment and care can be improved. The data will be made freely available in 2016/17 to encourage researchers to carry out their own in-depth analysis of patient experiences to improve treatment and care. Patients are at the heart of what we do. We strengthened our support and information through our new website, designed using in-depth research into the needs and preferences of its users – patients, carers, family, health professionals, and researchers. We also launched our new national Support Line, a lifeline for patients and their families where they can talk confidentially about their concerns about sarcoma. These new initiatives have led to a significant increase in people contacting Sarcoma UK.

Karen Delin Chair of Trustees

We are privileged to have such loyalty from the sarcoma community, and we take pride in our personal connection with our supporters. Our achievements are only possible because of the enthusiasm and commitment of all our supporters. We would like to pay tribute to musician Carey Lander who raised £100,000 for Sarcoma UK - our largest ever single fundraising appeal. We also honour Chris Martin, Principal Private Secretary to the Prime Minister whose support led to Sarcoma UK’s partnership with 10 Downing Street. Thank you for making a difference to the lives of everyone affected by sarcoma. Lindsey Bennister Chief Executive

Karen Delin Chair of Trustees

Lindsey Bennister Chief Executive Sarcoma UK Report of the trustees for the year ended 31 March 2016

Objectives and Activities

Sarcoma UK is the only cancer charity in the UK focusing on all types of sarcoma. Our Mission

is to amplify sarcoma awareness, inspire involvement, and fund ground-breaking research to transform the lives of everyone affected by sarcoma.

Our Goals

1. More people will survive sarcoma 2. More will be known about the causes of sarcoma 3. Everyone affected by sarcoma will have access to the best treatment and care

What we do

Sarcoma UK works with patients, carers, supporters, health professionals and researchers to drive awareness of sarcoma, promote early diagnosis and improve patient experience. Sarcoma UK has pledged to invest over ÂŁ3 million into sarcoma research by 2020 with the aim of finding effective treatment for the disease within the next 10 years. Sarcoma UK is the only UK charity providing personal support and expert information on sarcoma. Sarcoma UK aims to increase survival rates by at least 10% by 2020. Early diagnosis saves lives. Sarcoma UK provides education and training for GPs to help them recognise the symptoms of sarcoma.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

The sarcoma landscape 1. Sarcoma is cancer. It can develop anywhere in the body. 10 people are diagnosed with sarcoma every day in the UK. 2. Sarcoma is cancer of the bone or soft tissue. 3. A key symptom of sarcoma is a lump that is increasing in size, often quickly. 4. Sarcoma is one of the hardest cancers to diagnose. People visit their GP more times than those with any other form of cancer before being diagnosed with sarcoma. 5. Early diagnosis could increase survival by 20%. 6. Sarcoma is usually the size of a baked bean tin when diagnosed. If sarcoma is diagnosed when it is smaller than a golf ball, it would increase the chance of survival by at least 20%. 7. People with sarcoma tend to be younger than most people with cancer. 16% of sarcomas are diagnosed in people under 30, compared to only 2% of all other cancers.

â&#x20AC;&#x153;Thank you for the support I got from your organisation, helping us through a difficult time with our sonâ&#x20AC;&#x2122;s illness. The advice you gave was spot on and far exceeded our expectationsâ&#x20AC;? Sarcoma UK Report of the trustees for the year ended 31 March 2016

Achievements and Performance â&#x20AC;&#x201C; Priority 1

2015/16 was a year of high performance for the charity and significant progress was made against our strategic goals and priorities. We also put in place measures including Key Performance Indicators to monitor our impact, enabling us to report more comprehensively on our progress.

Initiate change to raise awareness and improve standards of treatment and care Early diagnosis of sarcoma is key to improving survival, yet most sarcoma patients are diagnosed when their cancer is the size of a baked bean tin. If the sarcoma was the size of a golf ball or smaller, survival rates could improve by 20%. Increased public awareness and greater knowledge of sarcoma amongst GPs will help bring about early diagnosis.

What we said we would do: 1. Expand our work on early diagnosis to provide and participate in GP training and education programmes. 2. Support education programmes for sarcoma specialist health professionals to encourage the development of expertise. 3. Publish a detailed report of sarcoma patient experiences in England and Scotland, which will act as a comprehensive evidence base to support improvements in treatment and care. 4. Launch a new comprehensive website that meets the needs of the sarcoma community and raises public awareness of sarcoma.

A Sarcoma UK poll of the general public in 2015 found that 53% of the public had not heard of sarcoma and only 26% knew it was a cancer. 8

Sarcoma UK Report of the trustees for the year ended 31 March 2016

What we did:

1. Sarcoma UK worked in partnership with BMJ Learning to provide free access to the GP online accredited education module ‘Lumps, Bumps, and Sarcomas’. Almost 3,300 modules were completed in one year. The module is one of BMJ Learning’s most popular and highly rated modules (ranked 22 out of 524) and has an 81% completion rate with excellent feedback comments. Sarcoma UK had face-to-face contact with over 500 GPs at five GP education events. We also spoke individually to 300 GPs at our stand, providing them with education resources including our GP Diagnostic Tool. In 2015/16, we sent out 760 ‘On the Ball’ packs, promoting early diagnosis and the ‘red flag’ symptoms of sarcoma. 350 packs were distributed to GPs in Northern Ireland by our partner sarcoma charity, the Boom Foundation. 2. Sarcoma UK’s work was showcased at the British Sarcoma Group annual conference, with three presentations from Sarcoma UK staff during plenary and workshop sessions. 3. Sarcoma UK published the findings of our National Sarcoma Survey 2015, the largest survey of sarcoma patient experience undertaken in the UK, involving 650 patients. This provides an important evidence base and a comprehensive dataset on which further detailed analysis can be undertaken. This evidence was used in our work with:

“Very useful. Well structured, good use of clinical photographs and a good range of case histories. Very effective for increasing awareness of factors to trigger thoughts of sarcoma in consultations and guidelines for referrals.” - GP

• • • • •

National Cancer Registration and Analysis Service Sarcoma Site-Specific Clinical Reference Group NHS England Sarcoma Clinical Reference Group NHS England on proposals for the new Cancer Drugs Fund Sarcoma Patients EuroNet Welsh Cancer Voices Sarcoma UK Report of the trustees for the year ended 31 March 2016

Priority 1

10 Downing Street Partnership In January 2016, Sarcoma UK was chosen as 10 Downing Street’s charity of the year, in tribute to the then Prime Minister, David Cameron’s Principal Private Secretary, Chris Martin, who passed away from sarcoma in November 2015. Chris was a supporter of Sarcoma UK and ran the London Marathon for the charity in April 2015. A programme of activities is planned with the 10 Downing Street staff throughout 2016/17.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

4. Our profile increased significantly in 2015/16, reflecting an increasing public awareness of sarcoma and progress towards one of the targets in our Strategy 2014-2020 that “60% of people will be aware of the term ‘sarcoma’ and the majority of these will know that sarcoma is a form of cancer”.

Website We launched our new website in September 2015. The new mobile-friendly design was developed with a user-centric approach which included measuring user behaviour and extensive testing for functionality, accessibility and usability. Our website homepage was viewed 82,000 times, compared to 6,000 times in the previous year.

Social media We had a 48% increase in our Facebook page ‘likes’ and 965 new followers on Twitter in 2015/16. Highlights included a posting by the then Prime Minister, David Cameron on Twitter (295 likes) and Facebook (8.5k likes) about a special Great British Bake Off event at 10 Downing Street to raise funds for Sarcoma UK, featuring 2015 winner Nadiya Hussain and judge Paul Hollywood.

Media

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There were 264 pieces in the media that mentioned Sarcoma UK, an increase of 46% from the previous year (average of five per week).

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Most coverage was generated by highprofile people of huge influence, who had been affected by sarcoma. These included Richard Whitehead MBE (Sarcoma UK’s Patron and Paralympian); Ryan Gosling (Hollywood actor who made his own short film paying tribute to Ryan McHenry, a sarcoma patient who had made a video featuring the actor eating his cereal); Carey Lander (famous keyboard player from indie band Camera Obscura); and Chris Martin (Principal Private Secretary to the then Prime Minister, David Cameron).

•

Our Patron, Richard Whitehead talked about his role on BBC Breakfast, and nominated Sarcoma UK as his charity of choice when he appeared on the ITV programme, The Chase.

•

National media included the Daily Telegraph online, the Sun, the Mail Online, the Pool, Rolling Stone magazine, the Independent and the Guardian, all featuring Sarcoma UK’s key messages. A special pull-out edition in the Observer (Dec 2015) of “Those we lost in 2015” included Carey Lander amongst the likes of Cilla Black and Terry Pratchett.

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We received recognition in broadcast media including extensive coverage on BBC 6 Music in relation to Carey Lander’s appeal.

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We have seen a significant increase in media interest in Wales (South Wales Echo; South Wales Argus; News North Wales) and Scotland (Glasgow Evening Times; Daily Star Scotland; Daily Record).

•

Regional coverage has also expanded as a result of the activities of our network of supporters who use our press release template to approach their local media.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Achievements and Performance – Priority 2

Seek answers through research Sarcoma is a complex disease that requires high levels of investment to bring about breakthroughs in understanding the causes, developing new treatments and ultimately preventing sarcoma. We invest in high quality, innovative research throughout the UK.

What we said we would do: 1. Increase Sarcoma UK’s investment into research funding. 2. Communicate the impact of our research funding, highlighting breakthroughs. 3. Hold a national event showcasing progress in sarcoma research.

What we did:

1. Sarcoma UK runs a UK-wide grants programme dedicated specifically to sarcoma. We are committed to funding high-quality, peer-reviewed research that benefits sarcoma patients. In 2015/16 the Board of Trustees allocated our largest funding call to date of £350,000. The aim was to expand our research portfolio and fully fund larger and longer projects. This resulted in six new grants (totalling £335,493) awarded in the first quarter of this financial year, bringing the total amount of research funded by Sarcoma UK to date to £1,042,094, with 23 projects funded.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

2015/16 awards:

•

Professor Donald Salter, University of Edinburgh: Development of Magnetic Nanoparticle Bearing Mesenchymal Stem Cells for Magnetic Hyperthermia Treatment of Sarcomas. £7,385. Start date: 1 September 2015. Duration 18 months.

•

Dr Neil Vargesson, University of Aberdeen: Causes and therapeutic implications of YAP activity in embryonal rhabdomyosarcoma. £118,872. Start date 1 January 2016. Duration 24 months.

•

Dr Gareth Veal, Newcastle University: An investigation into the impact of pharmacogenetic variation on clinical response and toxicity in patients treated with gemcitabine, docetaxel and doxorubicin on the GeDDiS trial. £22,317. Start date 1 August 2015. Duration 12 months.

•

Dr Chryso Kanthou, University of Sheffield: Neuropilin-1 (NRP-1) and VEGF isoforms as major players in sarcoma response to vascular-targeted therapies for cancer. £38,319. Start date 1 October 2016. Duration 36 months.

•

Dr Richard Martin, Aston University: Developing and characterising novel bioactive materials to selectively induce osteosarcoma cell death and simultaneously enhance bone regeneration. £28,600. Start date 1 November 2015. Duration 6 months.

•

Professor Adrienne Flanagan, University College London: To investigate the utility of PRC2 complex mutations as biomarkers for malignant peripheral nerve sheath tumours. £120,000. Start date 1 September 2015. Duration 24 months.

We continued to fund previous research commitments. Grants awarded in 2014/15: Dr Paul Huang, Institute of Cancer Research: Dissecting the mechanisms of pazopanib resistance in soft tissue sarcoma.

• •

Dr Claire Turnbull, Institute of Cancer Research: Studies of genetic susceptibility using exome sequencing in patients with sarcoma and an additional primary tumour.

New Research Strategy

Sarcoma UK also launched Dr Gareth Veal, Newcastle University: Study to investigate a new Research Strategy in correlations between age-dependent pharmacokinetic variation, 2015/16, highlighting our side-effects of chemotherapy and biomarkers of toxicity in commitment to expand our Ewing’s sarcoma. research programme in terms Dr Tim Forshew, University College London: Assessing the of investment and range of potential of circulating tumour DNA as a new biomarker for projects. We aim to invest low grade bone and soft tissue neoplasms. over £3 million into research Dr Barbara Tanos, Institute of Cancer Research: Role of by 2020. Sarcoma UK- funded TTBK2 and cilia in sarcoma progression. research will be:

• • •

Grants awarded in 2011/12: Dr Beatrice Seddon, University College London: The International Sarcoma Kindred Study: a global multisite prospective cancer genetics study.

•

• Patient-focused • Supporting people and projects • Pump-priming to support new ideas Sarcoma UK Report of the trustees for the year ended 31 March 2016

Priority 2

2. There has been an increase in outputs arising from the Sarcoma UK research programme in 2015/16 including presentations at academic conferences and meetings (national and international) and publications in peer reviewed academic journals. These academic outputs increase the knowledge base as well as provide much needed exposure of the achievements in sarcoma research. We also monitor how our research funding generates further funding from other research bodies. Presentations: Laboratory based assessment of physical functioning after treatment for sarcoma using a triaxial accelerometer. Presented at the Scottish Sarcoma Network Summer Education Day 2015; British Orthopaedic Oncology Society 2015. (Mr Craig Gerrand)

• •

Evaluating physical activity in the community after sarcoma treatment using triaxial accelerometry. A new paradigm for outcome assessment? Presented at the Scottish Sarcoma Network Summer Education Day 2015; British Orthopaedic Oncology Society 2015. (Mr Craig Gerrand)

• •

IDH1 and IDH2 digital PCR assay development for chondrosarcoma tissue and plasma analysis. Presented at the Dublin Pathology Conference 2015. (Dr Tim Forshew) Development of Diagnostic Test for H3F3A p.Gly34Try (G34W) Mutation in Giant Cell Tumours of Bone Based on Droplet Digital PCR. Presented at the Dublin Pathology Conference 2015 (Dr Tim Forshew)

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Sequencing and dPCR analysis of circulating tumour DNA. The challenges and potential applications of liquid biopsy analysis. Keynote presentation at Next Generation Sequencing Conference, New Zealand, August 2015. (Dr Tim Forshew)

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NGS and dPCR Analysis of Circulating Tumour DNA and Their Potential Uses in Cancer Patient Care. qPCR & NGS 2015 - Advanced Molecular Diagnostics for Biomarker Discovery, Germany, 2015. (Dr Tim Forshew)

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Presentation on Sarcoma UK research project at the UK Clinical Cancer Genetics Group, 2015. (Dr Claire Turnbull) Presentation on Sarcoma UK research project at the National Cancer Research Institute Sarcoma Clinical Studies Group, Bone Sarcoma Sub-Group meeting, London, 2015. (Dr Gareth Veal)

•

Sarcoma UK’s Talking Research event, 2015: • Dr Robin Young • Professor Ted Hupp • Dr Paul Huang • Dr Gareth Veal • Dr Nicholas Gough

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Publications: A.D. Mohamed, et al,The Hippo signal transduction pathway in soft tissue sarcomas, Biochim. Biophys. Acta (2015)

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Research Funding:

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Mutations identified in Dr Paul Huang’s Sarcoma UK-funded project are found in 20% of cancers. An award of £50,000 was made by the Lung Cancer Research Foundation to Dr Huang in 2015 to pursue this follow-on work

Sarcoma UK Communications: In 2015/16, we increased our engagement with our research community to showcase their achievements and progress. The impact and outputs of Sarcoma UK-funded research were widely communicated through our website and in our publication, Connect. Sarcoma UKfunded researchers were featured in a new video about Sarcoma UK on the home page of our website

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We hosted our first research event - Talking Research - in Manchester in 2015. The event showcased Sarcoma UK’s research programme and gave delegates the opportunity to learn about developments in sarcoma research. 130 delegates attended, including patients, family members, friends, health professionals, researchers and representatives from industry. The programme included presentations from several of our funded researchers: Dr Robin Young, Professor Ted Hupp, Dr Paul Huang, Dr Gareth Veal and Dr Nicholas Gough. Our Patron, Richard Whitehead MBE, gave an inspirational speech and spent time with delegates after the event. Sarcoma UK Report of the trustees for the year ended 31 March 2016

Achievements and Performance – Priority 3

Support the sarcoma community and provide information Sarcoma UK’s National Sarcoma Survey 2015 highlighted that over a third of people with sarcoma wanted more emotional support, and one in 10 patients did not have access to a sarcoma Clinical Nurse Specialist at their hospital.

What we said we would do: 1. Expand our support services to provide tailored, individualised support and information to people with sarcoma and their families. 2. Produce new patient information on sarcoma. 3. Increase the distribution of our patient information.

What we did: 1. We launched our national Support Line in February 2016. This confidential Freephone service enables people to call or email our Sarcoma Specialist Nurse, five days a week. It has resulted in a large increase in people using our services. In 2015/16 we had 303 information and support enquiries in total, of which 42% have been since the opening of the support line (February–March 2016). In addition, Facebook Messenger and social media is an increasingly popular way of contacting Sarcoma UK’s services for support and information.

Sarcoma

Support Line

0808 801 0401

supportline@sarcoma.org.uk

Sarcoma UK Report of the trustees for the year ended 31 March 2016

2. Sarcoma UK was involved in 25 events held during the year that provided information and support to patients, including Living Well with Sarcoma events in conjunction with sarcoma specialist centres, sarcoma support group meetings, regional sarcoma conferences, and patient/ professional education events in Scotland, Northern Ireland and England. We provided face-toface information and support to over 550 people affected by sarcoma. Sarcoma UK continued to support 15 regional support groups in 2015/16 including a new sarcoma group in Oswestry, linked to the sarcoma specialist centre. The GroupSpaces online gynaecological sarcoma group also met for the first time for a social event in 2015. 3. The sarcoma information on our website expanded significantly with the launch of the new site, including a Sarcoma Index of information about most sub-types of sarcoma. We aim to produce information tailored to sarcoma patient needs and, as requested by sarcoma patients, we now have information about the four most common bone sarcomas and the nine most common soft tissue sarcomas. Our printed booklets remain very popular. In 2015/16, we introduced two new booklets: Understanding bone sarcoma and Understanding retroperitoneal sarcoma, available both in print and to download from the website. 2015/16 saw a growth in the distribution of our five booklets and factsheets, with 4,500 copies sent out. This is an increase of 33% from last year. We distributed these to patients primarily through Clinical Nurse Specialists at sarcoma specialist centres throughout England, Wales, Northern Ireland and Scotland. All our patient information continues to be Information Standard accredited, a mark of quality in health information, and offers people the space to keep notes about their personal treatment.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Achievements and Performance – Priority 4

Build a strong charity To deliver our ambitious plans for the future, the trustees wish to develop sustainable and diverse income streams that grow each year. The trustees also recognise that this must be backed up by high-quality operational and governance processes including data management, financial controls, risk management, impact monitoring and transparency.

What we said we would do: 1. Diversify our income streams to ensure a sustainable funding base. 2. Strengthen internal resources and management processes. 3. Improve our impact monitoring through the introduction of KPIs.

What we did:

1. The enthusiasm and imagination of Sarcoma UK fundraisers continues to astonish us. This year they have taken part in a gruelling 12-hour danceathon; held a superheroes-themed party; swum in the icy Solent on New Year’s Day; knitted hundreds of socks, completed an alcohol-free ‘dryathlon’; and organised a fun run in which every participant dressed as video game characters Mario or Luigi. They have raced, hiked, trekked, skydived, cycled, jumped, baked and busked. To each and every one of our wonderful fundraisers we offer our heartfelt thanks. Community and events fundraising has traditionally delivered more than half the charity’s income but as the charity grows, diversifying our income streams becomes increasingly important. We have therefore broadened our focus in 2015/16 to include major donors, major fundraisers and individual giving, while maintaining the same high level of support for those taking part in and organising events.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Sarcoma UK is fortunate to have a large number of family-and-friends groups raising at least £10,000 each in support or in memory of a loved one. This year we decided to reward these groups’ dedication and recognise their achievements by creating a Group Funds programme, which allows them to have their own web page, quarterly updates and the personal stewardship of a Fundraising Officer. In early 2016, a pilot with 14 Group Funds was launched to a very warm reception, and we aim to evaluate and expand the programme in 2016/17. In November, Sarcoma UK used direct mail for the first time to ask for donations. The appeal, which focused on the way scientific research changes lives, told the true story of Pippa, a sarcoma patient who was successfully treated with a new drug. Recipients were asked to make a monthly donation and the appeal was very successful, far exceeding our expectations. Over the course of the year, we have developed a partnership with a philanthropist who has agreed to make a transformational donation to the charity. This will fund a series of PhD studentships specialising in sarcoma, the first of which will be awarded in 2017. The donor has also very generously agreed to fund a scientific symposium for top sarcoma researchers, which will take place in the autumn of 2016. We believe this far-sighted gift will have a significant long-term impact in the field of sarcoma research. When Carey Lander, keyboard player and vocalist for Glasgow band Camera Obscura, launched her JustGiving page for Sarcoma UK in August, she hoped to raise “a bit of cash to help others in a similar situation”. Sadly she passed away from osteosarcoma in October, but not before seeing hundreds of fans around the world join her family and friends to make it our most successful JustGiving appeal ever. By the end of the financial year, over £100,000 had been raised for Sarcoma UK. We acknowledge, with grateful thanks, the significant support received from a number of charitable trusts and foundations, including the Bailey Will Trust, The Boom Foundation, the Charity of Stella Symons, the Lloyds Bank Foundation, the Orr Mackintosh Foundation and Tay Charitable Trust. We would particularly like to acknowledge the generous gifts in wills received from the late Geoff Barber, Penelope Dann, Katherine Farr, Philip Jones, Angela Richards, Sandra Seymour and Denis Thompson. We recognise the deeply personal decisions involved when making a will, and express our unending gratitude to all those who choose to leave a legacy to Sarcoma UK. 2. In 2015/16, we created a Senior Management Team and invested in new staff resources throughout the year including: Director of Fundraising Fundraising Officer Sarcoma Specialist Nurse (Support Line) Research Grants Officer

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Key Perfomance Indicators

In 2015/16, we implemented Key Performance Indicators to provide an in-depth analysis of progress against objectives and goals. To strengthen our financial reporting, the Board of Trustees agreed to recruit a new trustee with a special interest in finance during 2016/17. Sarcoma UK Report of the trustees for the year ended 31 March 2016

Future Plans

Strategic Priorities 1. Initiate change to raise awareness of sarcoma and improve standards of treatment and care. 2. Seek answers through research. 3. Support the sarcoma community and provide information. 4. Build a strong charity.

In 2016/17 we will:

• • • • • • • • •

Increase public awareness of sarcoma so that more people know that sarcoma is cancer, through our partnership with 10 Downing Street; Sarcoma Awareness Week; and targeted engagement with the media. Establish a GP Advisory Group. Draw on data from the National Sarcoma Survey to work with sarcoma specialist centres, multi-disciplinary teams and Clinical Nurse Specialists to improve the sarcoma patient experience. Increase our investment into sarcoma scientific research to half a million pounds in a single year, focusing on Basic Science, Clinical and Quality of Life research; and launch a new Studentship programme. Map all researchers and scientists in the UK with an interest in sarcoma. Hold our first Scientific Symposium (basic science) to answer the question “What causes sarcoma?” and identify research priorities for the next 10 years. Expand our national Support Line and support services. Expand our range of patient information materials including new information on clinical trials, proton beam therapy, head and neck sarcoma, and desmoid-type fibromatosis. Introduce new ways to communicate our activities and impact to supporters, and to reach more people affected by sarcoma.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Governance, Structure and Management

Legal Entity

Sarcoma UK is a charity registered in England and Wales with the Charity Commission on 17 January 2011, and registered as a charity in Scotland on 12 September 2013. Its governing documents are its memorandum and articles of association. Sarcoma UK is also a company limited by guarantee incorporated with Companies House on 10 January 2011. Sarcoma UK is sole corporate Trustee of former charity The Sarcoma Trust.

Charitable Objectives

The objectives of the charity are to promote and protect the physical and mental health of patients with bone and soft tissue sarcomas in the United Kingdom through the provision of information, support, education and practical advice to them, their families and their carers; the relief of sickness and the preservation of health in particular by promoting and supporting research with the publication of the useful results thereof and the development of more effective treatment and care for patients with bone and soft tissue sarcomas; to advance the education of the general public in all areas relating to sarcoma.

Board of Trustees 2015/16 Karen Delin – Chair Karen has over 20 years’ experience in nursing, with a particular interest and expertise in palliative care nursing through her professional role in a hospice. Karen also established and continues to organise the London Sarcoma Support Group. She has been a consumer member on the National Cancer Research Network’s sarcoma clinical studies group where she represented sarcoma patients’ perspectives on issues such as the practicalities of taking part in clinical trials.

Lesley Abraham Lesley is a founding trustee of Sarcoma UK. Her professional background includes working as a barrister’s clerk, a police officer and running her own business. Lesley currently helps to run the North West Sarcoma Support Group in Liverpool and is a patient representative for the Cancer Services Co-ordinating Group (CSCG) in Wales.

Dr Jane Barrett Jane’s background is in medicine and her career began in general practice. She later joined the pharmaceutical industry where she worked on the development of new drugs in various clinical areas. Following a Master’s degree in Medical Law, Jane’s interest moved towards the legal and ethical aspects of the use of vulnerable patient groups in research. She now provides independent medical and legal expertise to pharmaceutical companies.

Professor Rob Grimer Rob is Professor of Orthopaedic Oncology at the Royal Orthopaedic Hospital, Birmingham. He is one of the leading authorities in the world on sarcoma and has helped pioneer the use of extendable prostheses and the use of new surgical techniques such as irradiation and reimplantation of bone to treat sarcoma. Rob has chaired the National Cancer Research Institute’s Sarcoma Clinical Studies Group and the National Cancer Intelligence Network’s Sarcoma Group as well as being a founder of the British Sarcoma Group (the association for professionals in the sarcoma field).

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Governance, Structure and Management

Leigh Hibberdine Leigh works in events management and became involved with Sarcoma UK when her daughter was diagnosed in 2009 with paediatric wild-type GIST (gastro-intestinal stromal tumour). Leigh’s family and friends have become one of Sarcoma UK’s most successful fundraising teams.

Ian Hughes Ian is the owner at SILO Consulting Ltd, based in York. Ian’s motivation to become a trustee was driven by the first-hand knowledge that early diagnosis has a genuine impact on survival rates and his desire to help Sarcoma UK increase awareness and knowledge.

Sharon Reid Sharon is a former Executive Director and Chief Operating Officer at Edelman, the world’s largest PR agency, and has worked in communications for the last 18 years.

Helen Stradling Helen is an experienced and highly respected sarcoma clinical nurse specialist. Helen is a founder of the National Sarcoma Forum, a network of sarcoma clinical nurse specialists and allied health professionals set up to help the sharing of best practice in sarcoma management.

Dave Thompson Dave was an oil trader by profession, and was diagnosed with a fibrosarcoma when he was 38. Dave and his family have raised significant funds for the charity and his commitment and dedication to Sarcoma UK has been enormous. Sadly, Dave passed away from sarcoma in March 2016.

Sub-Committees HR Sub-Committee Responsibility for HR and staffing issues is delegated to the HR Sub-Committee who make recommendations to the Board of Trustees, including staff remuneration. Members 2015/16: • Helen Stradling • Sam Whittam • Glyn Wilmshurst

Nominations Sub-Committee Responsibility for the renewal of tenure, recruitment and appointment of trustees is delegated to the Nominations SubCommittee who make recommendations to the Board of Trustees. Members 2015/16: • Karen Delin • Dr Jane Barrett • Dr Jeff White

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Dr Jeff White Jeff is a consultant medical oncologist at the Beatson West of Scotland Cancer Centre, and former National Lead Clinician for the Scottish Sarcoma Network. The Network was formally launched in November 2004 and its aim is to optimise the management of patients with sarcoma in Scotland.

Sam Whittam Sam is a barrister working principally in the area of child protection and was called to the bar in 1995. In 2009, Sam lost her friend to sarcoma aged 42.

Glyn Wilmshurst Glyn co-founded the communications agency Touchline, which produces the publications, websites and branding of several governments as well as various international arts, trade, travel and sports organisations. In December 2010, Glyn was diagnosed with a myxoid liposarcoma. As a trustee, he is particularly interested in helping Sarcoma UK enhance the quality of the information available to people affected by sarcoma.

Trustee Appointment and Induction

Sarcoma UK places a high value on having an informed and skilled Board of Trustees which guides the charity to achieve its ambitious goals. Trustees serve a three-year term, after which they are eligible for re-election for a further three years. New trustees are recruited in various ways, according to the skills sought by the Board. Vacancies are advertised in national charity media; through professional networks; and via the charity’s website and networks. Potential trustees are invited to submit a formal application and attend an interview with the Nominations Sub-Committee. All trustees receive the Trustee Handbook, setting out the role and responsibilities of Sarcoma UK trustees, including the charity’s policies and procedures relating to governance. A Register of Trustees’ Interests is in place and updated annually. All new trustees receive the Trustee Handbook, governing document, strategy and business plan, published accounts and minutes of previous Board of Trustee meetings, as well as Charity Commission guidance on effective governance. A formal induction programme is in place, where trustees spend time with the Chief Executive and the Senior Management Team.

Organisational Structure

The Board of Trustees sets the strategic direction of Sarcoma UK and approves the main policies of the charity. It appoints and directs the Chief Executive, monitors performance and identifies and manages the major risks facing the charity. The Board meets four times a year. The Board delegates responsibility for the running of the charity to the Chief Executive with clearly communicated and recorded executive limits. The Chief Executive is responsible and accountable for achieving Sarcoma UK’s strategic objectives and delivering the annual business plan. A Senior Management Team is in place to support the Chief Executive, providing leadership across key areas of the charity’s work, and ensuring delivery of the charity’s day-to-day work. Sarcoma UK’s Senior Management Team in 2015/16 consisted of: • • • • •

Chief Executive Director of Finance & Resources Director of Fundraising & Marketing (to January 2016) Director of Fundraising (from January 2016) Director of Research, Support & Information

Sarcoma UK has a policy for reviewing staff salaries, set out in the Staff Handbook. Staff salaries are reviewed annually by the Board of Trustees HR Sub-Committee, on behalf of the Board of Trustees, and benchmarked against voluntary sector pay surveys and inflation. The remuneration of senior management is covered under this policy. The total number of staff employed at 31 March 2016 was 12 (including 2 part-time). The trustees are grateful to the small staff team for the outstanding work they do on behalf of people affected by sarcoma.

Volunteers

The trustees recognise the valuable contribution made by volunteers to Sarcoma UK and wish to record their gratitude for this commitment. These include members of Sarcoma UK’s Research Advisory Committee; sarcoma support group leaders; Sarcoma UK’s Information Review Panel; Sarcoma UK Report of the trustees for the year ended 31 March 2016

Governance, Structure and Management

individuals and families who have provided their stories for use as case studies; everyone who has undertaken fundraising and awareness-raising in their communities; and everyone who has set up information stands and cheering stations at events and challenges. We particularly want to thank Glenys Stittle, our office volunteer, for her dedication and support on a weekly basis; Emma Delin for her enormous contribution to the community fundraising team this year; and Lucy Alder, who first brought her fundraising expertise to the charity as a volunteer. In accordance with accepted practice, no amounts are included in the financial statements to reflect the value of work undertaken by volunteers.

Risk Assessment

The trustees have approved a risk policy, which is reviewed annually. In 2015/16, the policy stated that Sarcoma UK is prepared to consider taking a risk around areas relating to the delivery of our charitable objectives in order to make a difference to the lives of people affected by sarcoma. However, the charity will not take risks relating to the reputation of the charity, in particular risks that impact on the charity’s professionalism. Sarcoma UK will always remain transparent around sources of funding, where we spend our money, and our impact. Procedures are in place to minimise the risk of fraud, and to effectively manage internal operational risks. Sarcoma UK is also reluctant to take any significant risk relating to the investment of reserves. A reserves policy is in place. Sarcoma UK has a risk assessment model in place, which is reviewed regularly by the trustees. This model sets out the processes for identifying major strategic risks, assessing their likely impact and, where appropriate, the measures that need to be implemented to mitigate the risks. In our risk assessment model, risks are categorised under the following headings: Governance, Financial, Operational, Environmental and External Factors, Compliance Risk, and Charitable Objectives. The risk Action 2016/17 model has been reviewed Potential risk Controls in place Governance • Targeted recruitment processes managed • Recruit Trustee (Special by the trustees and by Nominations Sub-Committee Interest in Finance) Lack of relevant they are satisfied that skills on Board • Trustee Handbook appropriate systems • Induction & training programme are in place to mitigate Financial • Director of Finance position on Senior • Manual of financial major risks. Management Team procedures and policies Policies and The table (right) summarises the key areas of risk identified by the trustees, and the controls that are in place to mitigate them. The Senior Management Team is responsible for reviewing risks on a monthly basis. Changes to the risk assessment model are highlighted to the Board of Trustees at quarterly meetings.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

procedures

• Internal financial procedures • FRS 102 & SORP followed • Approved authority levels

• Recruit Trustee (Special Interest in Finance) • Review authority levels

Operational HR management

• Performance and development review process • Staff Handbook • HR Sub-Committee • Employment solicitor

• New HR policies

Fundraising

• Fundraising strategy • Diversity of fundraising streams • Investment in fundraising resources including key personnel • Reserves policy

• Strategic plan for sudden increase/decrease in income

Environmental/ External Reputation

• Vision and mission; 5 year strategy • Key messages • Branding guidelines • Ethical engagement policy • Media monitoring service • Complaints policy

• Social media policy • Appoint PR company

Grant Making Policy

Our research grants programme for sarcoma involves annual calls for proposals which are publicised to the UK sarcoma research community, in particular sarcoma active researchers and UK Higher Education Institutes. Applications submitted undergo a rigorous peer review process to identify the best quality sarcoma research projects in centres of excellence across the UK. Our Research Advisory Committee considers all peer reviews and makes recommendations for funding to the Board of Trustees, who approve the final grants. Sarcoma UK is a member of the Association of Medical Research Charities (AMRC) and is fully compliant with their practices. In 2015, we passed the AMRC Peer Review Audit and were highlighted as an example of best practice. Our Principle of Peer Review Policy is published and all applicants are made aware of it. We also publish our Conflicts of Interest policy, whereby all members of the Research Advisory Committee are required to provide an annual declaration of potential conflicts of interest. The policy also sets out the conditions for automatic exclusion from participation in funding decisions for members who have conflicts of interest, and this policy is implemented rigorously at meetings. Our research strategy was reviewed in 2015/16. It states that no area of research is given greater priority over any other within a call. We always award on the basis of the scientific quality of the proposed studies. Clinical research projects must be patient focused. We will support both people and projects, and will provide funding for pump-priming research to support the development of ideas. We wish to increase the sum total of sarcoma research in the UK and remain flexible in our approach towards funding and research partnerships.

Public Benefit

The trustees have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in planning its future activities. In particular, the trustees consider how planned activities will contribute to the aims and objectives that have been set.

Working with Others

Sarcoma UK recognises that progress towards our goals is maximised when working collaboratively with others who share an interest in improving the lives of people affected by sarcoma. As the only UK charity focusing on all types of sarcoma, we aim to work collaboratively with the whole sarcoma community to achieve our vision for the future. Sarcoma UK has relationships with the following organisations: Association of Medical Research Charities (AMRC); BMJ Learning; Bone Cancer Research Trust; Boom Foundation (Northern Ireland); British Sarcoma Group; Cancer 52; Cancer Campaigning Group; Cancer Research UK; Charity Finance Group; Chordoma UK; Fundraising Standards Board; GIST Support UK; GSK; Institute of Fundraising; Irish Sarcoma Group; Macmillan Cancer Support; Maggie’s Cancer Centres; National Cancer Intelligence Network; National Cancer Research Institute; National Institute for Health & Care Excellence; National Sarcoma Forum (of specialist nurses); NHS England Sarcoma Clinical Reference Group; Pfizer; PharmaMar; Public Health England; Quality Health; Sarcoma Patients EuroNet; Scottish Sarcoma Network; Shine Cancer Support; Specialised Healthcare Alliance; Takeda.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Financial Review

Income

Sarcoma UK has made excellent progress against its objectives for the year, successfully raising £1,202,498, an increase of 25% from the previous year (2015: £964,709). This was primarily due to an increase in general donations and gift aid (19%), trusts and foundations (42%) and corporate donations (34%). The charity was also in receipt of its first ever income from legacies. An income surplus of £107,924 (2015: £160,943) was made this year and increases total charity funds to £980,393 (2015: £872,469), of which £39,055 are restricted. The reserves policy is discussed below.

Gift Aid 12%

Legacies 4% Corporate donations 9%

Investment income 1%

Trusts & foundations 3% How we raise our money

General donations 71% The trustees wish to thank all donors for their invaluable support during the year, which is helping Sarcoma UK transform the lives of everyone affected by sarcoma.

Expenditure

Total expenditure increased by 36% to £1,094,574 (2015: £803,766). Expenditure on charitable activities increased by 39% to £867,426 (2015: £624,516). This reflects the significant achievements the charity made during the year to fund ground-breaking research, amplify sarcoma awareness, and provide support and information for everyone affected by sarcoma. The growth in our income is the direct result of the investment in our fundraising and communications department, where we have seen increased activity and achievements. This has resulted in an increase in the cost of raising funds by 27% this year.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

We strive to keep the costs of raising money to a minimum. This year for every £1 spent on fundraising £5.26 was raised.

Awareness & education 23%

Raising funds 21%

How we spend your money Information & support 16% Research 40%

The above activities include 20% support costs and 3% governance costs, which have been reallocated to each activity (see notes to financial statements).

Reserves Policy

The Board of Trustees aim to maintain reserves at a level which equates to approximately eight months of overhead costs plus current liabilities. The total funds of the charity at 31 March 2016 were £980,393, of which £39,055 are restricted. This leaves a balance of £941,338 as unrestricted funds. The trustees have agreed to designate £400,000 of these unrestricted funds to research grants in 2016/17, leaving a balance of £541,338. The level of reserves is equivalent to just over eight months of overhead costs plus current liabilities. This is approximately £450,000 for the forthcoming year, which will ensure uninterrupted services and delivery of our charitable activities. The reserves policy will be reviewed in 2016/17, to ensure it is adequate for the charity’s future operational needs.

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Statement of Responsibilities of the Trustees

The trustees (who are also directors of Sarcoma UK for the purposes of company law) are responsible for preparing the trustees’ annual report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). Company law requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure of the charitable company for that period. In preparing these financial statements, the trustees are required to:

•• •• •

Select suitable accounting policies and then apply them consistently Observe the methods and principles in the Charities SORP Make judgements and estimates that are reasonable and prudent State whether applicable UK Accounting Standards and statements of recommended practice have been followed, subject to any material departures disclosed and explained in the financial statements Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. In so far as the trustees are aware:

• •

There is no relevant audit information of which the charitable company’s auditors are unaware The trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information

The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. Members of the charity guarantee to contribute an amount not exceeding £1 to the assets of the charity in the event of winding up. The total number of such guarantees at 31 March 2016 was 10 (2015:12). The trustees are members of the charity but this entitles them only to voting rights. The trustees have no beneficial interest in the charity.

Auditors

Sayer Vincent LLP were re-appointed as the charitable company’s auditors during the year and have expressed their willingness to continue in that capacity. The trustees’ annual report has been approved by the trustees on 4 October 2016 and signed on their behalf by Karen Delin Chair of Trustees

Sarcoma UK Report of the trustees for the year ended 31 March 2016

Independent Auditor’s Report to the Members of Sarcoma UK

We have audited the financial statements of Sarcoma UK for the year ended 31 March 2016 which comprise the statement of financial activities, the balance sheet, the statement of cash flows and the related notes. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). This report is made solely to the charitable company’s members and trustees, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 . Our audit work has been undertaken so that we might state to the charitable company’s members and trustees those matters we are required to state to them in an auditors’ report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members and trustees, as a body, for our audit work, for this report, or for the opinions we have formed.

Respective responsibilities of trustees and auditors

As explained more fully in the statement of trustees’ responsibilities set out in the trustees’ annual report, the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view. We have been appointed as auditors under section 44(1)(c) of the Charities and Trustee Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts. Our responsibility is to audit and express an opinion on the financial statements in accordance with applicable law and International Standards on Auditing (UK and Ireland). Those standards require us to comply with the Auditing Practices Board’s Ethical Standards for Auditors.

Scope of the audit of the financial statements

An audit involves obtaining evidence about the amounts and disclosures in the financial statements sufficient to give reasonable assurance that the financial statements are free from material misstatement, whether caused by fraud or error. This includes an assessment of: whether the accounting policies are appropriate to the charitable company’s circumstances and have been consistently applied and adequately disclosed; the reasonableness of significant accounting estimates made by the trustees; and the overall presentation of the financial statements. In addition, we read all the financial and non-financial information in the trustees’ annual report to identify material inconsistencies with the audited financial statements and to identify any information that is apparently materially incorrect based on, or materially inconsistent with, the knowledge acquired by us in the course of performing the audit. If we become aware of any apparent material misstatements or inconsistencies we consider the implications for our report.

Opinion on financial statements In our opinion the financial statements:

•

Give a true and fair view of the state of the charitable company’s affairs as at 31 March 2016 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended Independent auditor’s report to the members of Sarcoma UK

Independent Auditor’s Report to the Members of Sarcoma UK

• •

Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice Have been prepared in accordance with the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005 and regulation 8 of the Charities Accounts (Scotland) Regulations 2006 (as amended)

Opinion on other matter prescribed by the Companies Act 2006 In our opinion the information given in the trustees’ annual report for the financial year for which the financial statements are prepared is consistent with the financial statements.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters where the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 (as amended) requires us to report to you if, in our opinion:

• • • • •

The charitable company has not kept proper and adequate accounting records or returns adequate for our audit have not been received from branches not visited by us The financial statements are not in agreement with the accounting records and returns

Certain disclosures of trustees’ remuneration specified by law are not made We have not received all the information and explanations we require for our audit The trustees were not entitled to prepare the financial statements in accordance with the small companies’ regime and take advantage of the small companies’ exemption in preparing the trustees’ annual report and take advantage of the small companies’ exemption from the requirement to prepare a strategic report

Noelia Serrano (Senior statutory auditor) 5 October 2016 for and on behalf of Sayer Vincent LLP, Statutory Auditors Invicta House, 108-114 Golden Lane, LONDON, EC1Y 0TL Sayer Vincent LLP is eligible to act as auditors in terms of section 1 212 of the Companies Act 2006

Independent auditor’s report to the members of Sarcoma UK

Financial Statements Front Cover Title Annual Report and Accounts For the year ended 31 March 2016 Page 31 Statement of financial activities

(Incorporating anreplace incomeFinancial and expenditure • Heading accounts account) with Financial statements For the ended 31 with March • year Replace table the2016 below;

Unrestricted £

Restricted £

2016 Total £

2015 Total £

1,086,920

105,981

1,192,901

956,392

Other trading activities

3,000

Investments

6,597

5,317

1,096,517

105,981

1,202,498

964,709

220,511

6,637

227,148

179,250

Research

380,797

59,604

440,401

322,827

Information and support

140,499

38,153

178,652

116,814

Awareness and education

216,730

31,643

248,373

184,875

958,537

136,037

1,094,574

803,766

137,980

(30,056)

107,924

160,943

Total funds brought forward

803,358

69,111

872,469

711,526

Total funds carried forward

941,338

39,055

980,393

872,469

Note Income from: Donations and legacies

Total income Expenditure on: Raising funds Charitable activities

Total expenditure Net income / (expenditure) and net movement in funds for the year

Reconciliation of funds:

All of the above results are derived from continuing activities. There were no other recognised gains or loses other than those stated above. Movements in funds are disclosed in Note 16 to the financial statements.

Page 1 of 7

Sarcoma UK Financial statements for the year ended 31 March 2016

• •

Capitalise the heading Independent Auditor’s Report Incorrect spelling for Independant

Financial Statements Page 31- 42 • •

Capitalise the heading Financial Statements Could the table headers currently in grey be a lighter shade of one of our branding colours used in the report?

Page 32

Balance sheet • Replace For the year ended 31 March 2016 with As at 31 March 2016 As at 31 March 2016 • •

Is the Balance sheet heading the same size as the other financial statement headings? Replace table with the below; £

Note Fixed assets: Tangible assets Current assets: Debtors Short term deposits Cash and cash equivalents Liabilities: Creditors: amounts falling due within one year

2015

12,669

250,923 204,802 1,092,811

178,136 301,656 675,381

1,548,536

1,155,173

419,930

220,190

Net current assets / (liabilities)

1,128,606

934,983

Total assets less current liabilities

1,144,252

947,652

163,859

75,183

980,393

872,469

39,055

69,111

Creditors: amounts falling due after one year

Total net assets / (liabilities) The funds of the charity: Restricted income funds Unrestricted income funds: Designated funds General funds

400,000 541,338

335,493 467,865

Total unrestricted funds

941,338

803,358

Total charity funds

980,393

872,469

Approved by the trustees on 4 October 2016 and signed on their behalf by Karen Delin Chair of Trustees (Company no: 7487432)

15,646

11 12

2016

Sarcoma UK Financial statements for the year ended 31 March 2016

Page 2 of 7

Page 33 Statement of cash flows

For the year ended 31 March 2016 •

Replace table with the below; Note

2016

2015

Cash flows from operating activities: Net cash provided by / (used in) operating

323,528

Cash flows from investing activities Transferred from / (to) short term deposits

96,854

(301,656)

6,597

5,317

(9,549)

(1,646)

Interest received Purchase of fixed assets

244,466

Net cash provided by / (used in) investing

93,902

(297,985)

Change in cash and cash equivalents in the year

417,430

(53,519)

Cash and cash equivalents at the beginning of the year

675,381

728,900

1,092,811

675,381

Cash and cash equivalents at the end of the year

Page 3 of 7

Sarcoma UK Financial statements for the year ended 31 March 2016

Financial Statements

Notes to the Financial Statements For the year ended 31 March 2016 1. Accounting policies a) Basis of preparation The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) - (Charities SORP FRS 102), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (August 2014) and the Companies Act 2006. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy or note. b) Public benefit entity The charitable company meets the definition of a public benefit entity under FRS 102. c) Going concern The trustees consider that there are no material uncertainties about the charitable company’s ability to continue as a going concern. The trustees do not consider that there are any sources of estimation uncertainty at the reporting date that have a significant risk of causing a material adjustment to the carrying amounts of assets and liabilities within the next reporting period. d) Income Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the income have been met, it is probable that the income will be received and that the amount can be measured reliably. Income from revenue grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred. For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the charity that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor’s intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting

Sarcoma UK Financial statements for the year ended 31 March 2016

of probate, and the criteria for income recognition have not been met, then the legacy is a treated as a contingent asset and disclosed if material. Income received in advance of the provision of a specified service is deferred until the criteria for income recognition are met. e) Donations of gifts, services and facilities Donated professional services and donated facilities are recognised as income when the charity has control over the item or received the service, any conditions associated with the donation have been met, the receipt of economic benefit from the use by the charity of the item is probable and that economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), volunteer time is not recognised so refer to the trustees’ annual report for more information about their contribution. On receipt, donated gifts, professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt. f) Interest receivable Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the bank. g) Fund accounting Restricted funds are to be used for specific purposes as laid down by the donor. Expenditure which meets these criteria is charged to the fund. Unrestricted funds are donations and other incoming resources received or generated for the charitable purposes. Designated funds are unrestricted funds earmarked by the trustees for particular purposes. h) Expenditure and irrecoverable VAT Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. Expenditure is classified under the following activity headings: • Costs of raising funds relate to the costs incurred by the charitable company in inducing third parties to make voluntary contributions to it, as well as the cost of any activities with a fundraising purpose

• Expenditure on charitable activities includes the costs of raising sarcoma awareness, funding research and providing information and support, all undertaken to further the purposes of the charity and their associated support costs Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred. i) Allocation of support costs Resources expended are allocated to the particular activity where the cost relates directly to that activity. Support costs are those costs which do not in themselves constitute a charitable or fundraising activity, but are the central office functions necessary to support these activities. They include administration, finance, HR and office overhead costs. Governance costs are the costs associated with the governance arrangements of the charity. These costs are associated with constitutional and statutory requirements and include any costs associated with the strategic management of the charity’s activities. Support and governance costs are re-allocated to each of the activities on the following basis which is an estimate, based on staff time, of the amount attributable to each activity: • Raising funds 26% • Research 21% • Information and support 26% • Awareness and education 26% j) Operating leases Rental charges are charged on a straight line basis over the term of the lease. k) Tangible fixed assets Items of equipment are capitalised where the purchase price exceeds £250. Depreciation costs are allocated to activities on the basis of the use of the related assets in those activities. Assets are reviewed for impairment if circumstances indicate their carrying value may exceed their net realisable value and value in use.

l) Debtors Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due. m) Cash at bank and in hand Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. Cash balances exclude any funds held on behalf of service users. n) Creditors and provisions Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

o) Pensions The charitable company operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the charitable company in an independently administered fund. The pension cost charge represents contributions payable under the scheme by the charitable company to the fund. The charitable company has no liability under the scheme other than for the payment of those contributions.

Where fixed assets have been revalued, any excess between the revalued amount and the historic cost of the asset will be shown as a revaluation reserve in the balance sheet. Depreciation is provided at rates calculated to write down the cost of each asset to its estimated residual value over its expected useful life. The depreciation rates in use are as follows: • Fixtures and fittings 5 years • Computer equipment 5 years Sarcoma UK Financial statements for the year ended 31 March 2016

Financial Statements Notes to the financial statements For the year ended 31 March 2016

2. Detailed comparatives for the statement of financial activities 2.

Detailed comparatives for the statement of financial activities Unrestricted £

Restricted £

2015 Total £

907,156

49,236

956,392

Other trading activities

3,000

Investments

5,317

915,473

49,236

964,709

Income from: Donations and legacies

Total income Expenditure on: Raising funds

178,017

1,233

179,250

Charitable activities

523,323

101,193

624,516

Total expenditure 701,340 Paragraph 3, 3rd line replace required with invited

102,426

803,766

(53,190)

160,943

122,301

711,526

69,111

872,469

Page 23 •

Net income / (expenditure) and net Page 36-movement 42 in funds for the year

214,133

Capitalise the heading Financial Statements on pages 36-42 Reconciliation of funds: Total funds brought forward 589,225 Page 36 •

•

Total funds carried forward Missing the paragraph under the table;

803,358

Donated services include work by Touchline on the production of a Sarcoma UK report. Glyn Wilmshurst, CEO at Touchline, is a member of Sarcoma UK Board of Trustees. Income from donations and legacies

3. Income from legacies Replace Income from donations donations andand legacies table with the below;

Donations and gifts Legacies Donations and gifts Donated services Legacies Donated services

Unrestricted £ Unrestricted 1,045,674 £ 39,746 1,045,674 1,500 39,746

Restricted £ Restricted 95,981 £ 10,000 95,981 10,000

2016 Total £ 2016 Total 1,141,655 £ 49,746 1,141,655 1,500 49,746

2015 Total £ 2015 Total 947,627 £ 944,627 11,765 -

1,086,920 1,500

105,981-

1,192,901 1,500

959,392 11,765

1,086,920

105,981

1,192,901

956,392

Donated services include work by Touchline on the production of a Sarcoma UK report. Glyn Wilmshurst, CEO at Touchline, is a member of Sarcoma UK Board of Trustee's.

Donated services include work by Touchline on the production of a Sarcoma UK report. Glyn Wilmshurst, CEO at Touchline, is a member of Sarcoma UK Board of Trustees.

Sarcoma UK Financial statements for the year ended 31 March 2016

179,250

Total expenditure 2015

322,827

440,401

6,801

47,235

116,814

178,652

8,487

58,951

111,214

7,819 20,000 90 -

3,807 -

1,379

78,119

184,875

248,373

8,433

58,579

181,361

20,000 250 -

8,100 62,996

1,248

2,230 -

86,537

Charitable activities Information Awareness and and support education

(32,127)

32,127

7,093 -

6,818

207

18,009

Governance costs

(223,157)

223,157

562 1,623 387 6,572

90,305 12,313 950 438 -

1,216

5,444 -

103,347

Support costs

Page 5 of 7 Of the total expenditure £958,537 was unrestricted (2015: £701,340) and £136,037 was restricted (2015: £102,426).

227,148

8,406

58,392

386,365

160,350

Total expenditure 2016

Governance costs

Support costs

5,000 444 -

13,077

4,150

884 320,438

42,372

Research

5,000 452 -

Information services Office costs Office communication costs Infrastructure development Membership subscriptions Trustees development, expenses & meeting costs

Legal & professional Insurance Bank charges Depreciation

4,561

PR & marketing Support services Awareness & education projects

Fundraising appeals

39,585 13,744 41,171

405

Travel, subsistence & conference fees

Fundraising fees Fundraising materials Events, participation & publicity costs

2,612 -

52,820

Cost of raising funds

Other staff costs Research grants payable (note 5)

Staff costs (note 7)

4. Analysis of expenditure

803,766 -

1,094,574 -

803,766

7,359 1,714 741 4,943

7,655 1,623 387 6,572

1,094,574

6,772 53,137 10,540 23,609 892 4,628

28,039 26,609 18,704

39,585 13,744 54,248

7,819 90,305 12,313 50,950 1,674 6,818

6,168

8,605

10,843 251,521

11,170 320,438

9,357 2,618 52,818

282,754

381,204

8,100 3,807 62,996

4,561

2015 Total

2016 Total

Financial Statements Notes to the financial statements Notes to the financial statements

For the year ended 31 March 2016 Page 38 For the year ended 31 March 2016 • Replace5. Grant making table with the below; Grant making

Grant making 5. Grant making

2016 £ 2016

Grants to institutions: University Edinburgh Grants to of institutions: University of of Edinburgh Aberdeen University GrantsoftoSheffield institutions: University University of Aberdeen University of Edinburgh Aston University University of Sheffield University of Aberdeen University of Oxford (returned balance) Aston University University of Sheffield Newcastleof University University Oxford (returned balance) Aston University University College London Newcastle University University of Oxford (returned balance) Institute ofCollege Cancer Research University London Newcastle University Institute of Cancer Research University College London Institute of Cancer Research •

£ 2016 7,385 £ 118,872 7,385 38,319 118,872 7,385 28,600 38,319 118,872 (15,055) 28,600 38,319 22,317 (15,055) 28,600 120,000 22,317 (15,055) 120,000 22,317 120,000 320,438 320,438 320,438

2015 £ 2015

£ 2015 -- £ -- -- -- -43,490- 25,680 43,490 182,351 25,680 43,490 182,351 25,680 251,521 182,351 251,521 251,521

Bullet point align of management with Analysis Full 7, details of key grant making activities are disclosed on page 13 of the report of the trustees.

Full details of grant making activities are disclosed on page 7 of the report of the trustees. 7. Analysis of staff costs, trustees remuneration and expenses, and the cost Full details of grant making activities are disclosed on page 7 of the report of the trustees. of income key management 6. Net year 6./ (expenditure) Net incomefor/ the (expenditure) for the year 6. Net income / (expenditure) for the year Thisafter is stated after charging / (crediting): This is stated charging / (crediting): Page 39 This is stated after charging / (crediting): 2016 2015 • Replace Related party transactions text with; £ £ 2016 2015 There are noDepreciation donations from related parties which are outside6,572 the normal course and £ £ 4,943of business no restrictedInterest donations from related parties. payable 6,597 5,317 Depreciation 6,572 4,943 Operating lease rentals: Interest payable 6,597 5,317 There are no related party transactions to disclose for 2016 45,093 (2015: none). 36,377 Property Operating lease rentals: Auditors’ remuneration (excluding VAT): Property 45,093 36,377 Page 40 Audit 5,900 5,700 Auditors’ remuneration (excluding VAT): Audit 5,700 • Insert the following text under Tangible fixed assets table; 5,900 7.

Analysis of above staff costs, remuneration expenses, and the cost of key All of the assetstrustee are used for charitableand purposes. management 7. Analysis staff costs, remuneration andremuneration expenses, and the cost of key 7. ofAnalysis oftrustee staff costs, trustee and expenses, Page 41management of key management Staff costs are as follows: • Could the Movements in funds table (page 42) be moved onto this page to avoid such a Staff costs as follows: Staffare costs are as follows: large blank space? 2016 2015 £ £ 2016 2015 £ Salaries and wages 331,907 251,511 £ Social security costs Salaries and wages Employer’s contribution Social security coststo defined contribution pension schemes Employer’s contribution to defined contribution pension schemes Accrued holiday pay Accrued holiday pay

otes to the financial statements

or the year ended 31 March 2016

33,355 331,907 33,355 6,726 6,726 9,216

24,840 251,511 24,840 6,403 6,403 -

9,216 381,204 381,204

282,754 282,754

and the cost

The of following number of employees received(excluding employeeemployer benefits (excluding The following number employees received employee benefits pension employer pension costs) during the year between: costs) during the year between: Page 6 of 7

£60,000 - £69,999

2016 No.

2015 No.

Sarcoma UK Financial statements The total employee benefits including pension contributions of the key management personnel for the year ended 31 March 2016

38 were £200,597 (2015: £63,221) incurred by 5 (2015:1) employees.

For the year ended 31 March 2016

The following number of employees received employee benefits (excluding employer pension costs) during the year between:

£60,000 - £69,999

2016 No.

2015 No.

The total employee benefits including pension contributions of the key management personnel were £200,597 (2015: £63,221) incurred by 5 (2015:1) employees. The total employee benefits including of the key benefits management The charity trustees were pension not paidcontributions or received any other frompersonnel employment with the were £200,597 (2015: £63,221) incurred by 5 (2015:1) employees.

charity in the year (2015: £nil). No charity trustee received payment for professional or other theorcharity (2015: £nil).benefits from employment with the The charityservices trusteessupplied were notto paid received any other charity in the year (2015: £nil). No charity trustee received payment for professional or other Trustees’ expenses represents the payment or reimbursement of travel and subsistence costs services supplied to the charity (2015: £nil).

totalling £5,721 (2015: £3,588) incurred by 12 (2015: 14) members relating to attendance at

Trustees' expenses the payment or reimbursement of travel and subsistence costs meetingsrepresents of the trustees. totalling £5,721 (2015: £3,588) incurred by 12 (2015: 14) members relating to attendance at meetings of the trustees. 8.

Staff numbers 8. Staff

numbers

The average number of (head employees basedofonstaff number of staff employed) during the The average number of employees count(head basedcount on number employed) during the was as follows: year was asyear follows:

Raising funds Research Information and support Awareness and education Support Governance

9. transactions Related party Related party

2016 No.

2015 No.

2 1 2 2 2 0

2 1 1 1 2 0

transactions

There are no donations from related parties which are outside the normal course of business and

There are no donations from related parties which are outside the normal course of business and no restricted donations from related parties. no restricted donations from related parties. 10. Taxation

There are no related party transactions to disclose for 2016 (2015: none).

The charitable company is exempt from corporation tax as all its income is charitable and is Taxation applied for 10. charitable purposes.

The charitable company is exempt from corporation tax as all its income is charitable and is applied for charitable purposes.

Sarcoma UK Financial statements for the year ended 31 March 2016

Financial Statements Notes to the financial statements For the year ended 31 March 2016

Notes to the financial statements Notes the financial statements 11. Tangible fixed ForTangible the to year ended 31 March 2016 assets 11. fixed assets For the year ended 31 March 2016 11. Tangible fixed assets 11. Tangible fixed assets Cost of valuation At the start of the year Additions in the year

Fixtures and fittings £

Computer equipment £

Total £

Cost of valuation AtAtthe theend startofofthe theyear year Cost of valuation Additions in the year At the start of the year Depreciation Additions in the year thestart end of of the the year year AtAtthe Charge for the year At the end of the year

Fixtures and 5,466 fittings Fixtures 8,481£ and fittings £ 13,947 5,466 8,481 5,466 8,481 13,947 3,140 2,859 13,947

Computer equipment 18,924 Computer 1,068£ equipment £ 19,992 18,924 1,068 18,924 1,068 19,992 8,581 3,713 19,992

Depreciation At the end of the year At the start of the year Depreciation Charge for the year At the start of the year Net bookfor value at the Charge the year At the end year of the year end of the

Total 24,390 9,549£ Total £ 33,939 24,390 9,549 24,390 9,549 33,939 11,721 6,572 33,939

5,999 3,140 2,859 3,140 7,948 2,859 5,999

12,294 8,581 3,713 8,581 7,698 3,713 12,294

18,293 11,721 6,572 11,721 15,646 6,572 18,293

At the end of the year 5,999 12,294 2,326 10,343 Net book value at the 7,948 7,698 end of the year Net book value at the 7,948 7,698 of the year of the above assets are used for charitable purposes. 12. Debtors Allend At the start of the year 2,326 10,343 At the start of the year

At the start of the year

2,326

12. Debtors12. Debtors Other debtors 12. Debtors Prepayments Accrued income Other debtors Prepayments Other debtors Accrued income Prepayments Accrued income 13. Creditors: amounts falling due within one year

13. Creditors: amounts falling due within one year TradeCreditors: creditors 13. amounts due 13. Creditors: amounts falling due withinfalling one year Taxation and social security Other creditors Accruals Trade creditors Grants payable Taxation and social security Trade creditors Other creditors Taxation and social security Accruals Other creditors Grants payable Accruals Grants payable

Sarcoma UK Financial statements for the year ended 31 March 2016

10,343 2016

18,293 15,646

12,669

15,646 12,669 12,669 2015

16,498 2016 80,259 154,166£ 2016 £ 16,498 250,923 80,259 16,498 154,166 80,259 154,166 250,923

10,517 2015 84,840 82,779£ 2015 £ 10,517 178,136 84,840 10,517 82,779 84,840 82,779 178,136

250,923 2016 £

178,136 2015 £

27,688 within one year 2016 11,947 300£ 2016 93,812 £ 27,688 286,183 11,947 27,688 300 11,947 419,930 93,812 300 286,183 93,812 286,183 419,930

5,135 2015 7,670 247£ 2015 10,800 £ 5,135 196,338 7,670 5,135 247 7,670 220,190 10,800 247 196,338 10,800 196,338 220,190

419,930

220,190

Notes to the financial statements For the year ended 31 March 2016

14.amounts Creditors: falling 14. Creditors: fallingamounts due after one year due

Grants payable

after one year 2016 £

2015 £

163,859

75,183

163,859

75,183

PagePage 41 41 15. Analysis of net assets between funds • Analysis Replace Analysis ofassets net assets between funds withbelow; the below; • 15. Replace Analysis of net between funds tabletable with the of net assets between funds General Total unrestricted Designated Restricted funds General £General £ £ £ TotalTotal unrestricted Designated Designated Restricted Restricted funds unrestricted funds Tangible fixed assets 2,802 12,844 £ £ £ £ £ £ £ 15,646 £ Net current assets 538,536 2,8022,802 563,859 26,211 1,128,606 15,646 Tangible assets 12,844 15,646 Tangible fixed fixed assets 12,844 Long term Net current assets Net liabilities current assets

(163,859)563,859 538,536 563,859 538,536

- 26,211 (163,859) 26,211 1,128,606 1,128,606

Net assets theterm end liabilities Long - (163,859) (163,859) - (163,859) (163,859) Longat term liabilities of the year 541,338 400,000 39,055 980,393 Net assets atend the end Net assets at the ofyear the year 541,338 400,000 39,055 980,393 980,393 of the 541,338 400,000 39,055

PagePage 42 42 •

16. in in funds • Movements Replace Movements in funds withbelow; the below; Replace Movements funds tabletable with the Incoming Outgoing Outgoing At the At theAt the Incoming At the resources resources resources end of start start of of resources end of the year & gains & losses & losses Transfers Transfers the year the year the year & gains £ £ £ £ £ £ £ £ £ £

Restricted funds: Restricted funds: Sarcoma Sarcoma TrustTrust 10 10 Infrastructure development69,101 69,101 Infrastructure development Research Research Awareness and education Awareness and education Information and support Information and support restricted funds TotalTotal restricted funds

69,111 69,111

(56,258) (56,258) (53,279) (53,279) (10,000) (10,000) (16,500) (16,500)

10 10 12,843 12,843 26,202 26,202 -

105,981 (136,037) (136,037) 105,981

39,055 39,055

79,481 79,481 10,000 10,000 16,500 16,500

Unrestricted funds: Unrestricted funds: Research designated 335,493 - (267,159) (267,159) 331,666 331,666 400,000 400,000 Research designated fundsfunds 335,493 General 467,865 1,096,517 1,096,517 (691,378) (691,378) (331,666) (331,666) 541,338 541,338 General fundsfunds 467,865 unrestricted funds803,358 803,358 1,096,517 1,096,517 (958,537) (958,537) TotalTotal unrestricted funds

- 941,338 941,338

funds TotalTotal funds

- 980,393 980,393

872,469 1,202,498 1,202,498(1,094,574) (1,094,574) 872,469

PagePage 42 42 •

• Bullet 17, align operating activities with Reconciliation Bullet pointpoint 17, align operating activities with Reconciliation

17. Reconciliation ofincome net income / (expenditure) tocash net cash 17. Reconciliation of net / (expenditure) to net flow flow fromfrom Operating activities Operating activities PagePage 44 44 •

• Capitalise the heading Reference and Administrative Details Capitalise the heading Reference and Administrative Details

Sarcoma UK Financial statements for the year ended 31 March 2016

Financial Statements

Purposes of restricted funds: Sarcoma Trust These funds represent the amounts retained within the Sarcoma Trust after becoming a linked charity with Sarcoma UK. Infrastructure Development These funds were given to build the capacity of the organisation and developing its structure and systems in order to be able to establish an on-going sustainable organisation. Any costs and staff time spent associated with the development of Sarcoma UK and establishing the new structure and systems have been allocated against this fund. Research These funds are to be used specifically towards research grants, as requested by the donor. Awareness and Education

Page These 42 funds are to be used specifically towards raising awareness and improving standards of •

treatment and care, as in requested by the Replace Movements funds table withdonor. the below;

Notes to the financial statements

Information and Support Incoming Outgoing At the For the year ended 31 March 2016 At the These funds are to be usedstart specifically towards the provision of support and information of resources resources endfor of the the year by the&donor. gains & losses Transfers the year sarcoma community, as requested £ £ £ £ £ Information and Support Restricted funds: Purposes funds: These funds areof to designated be used specifically towards the provision of support and information for the sarcoma community, as requested by the donor. Sarcoma Trust 10 10 Research These funds represent funds: those designated by the -trustees,(56,258) towards research grants Infrastructure 69,101 - in 2016/17. 12,843 Purposes ofdevelopment designated

Research 79,481 (53,279) 26,202 Research Awareness and education 10,000 (10,000) These funds represent those designated by the trustees, towards research grants in 2016/17. Information and support 16,500 (16,500) 17. Reconciliation of net income / (expenditure) to net cash flow from 17. Reconciliation of netactivities income / (expenditure) to net cash flow from operating activities operating Total restricted funds 69,111 105,981 (136,037) 39,055 2016 £

2015 £

Net income / (expenditure) for the reporting period Research designated funds 335,493 (267,159) (as per the statement of financial activities) 107,924 General funds 467,865 1,096,517 (691,378) Depreciation charges 6,572 Interest (6,597) Total(Increase) unrestricted funds in debtors 803,358 1,096,517 (958,537) / decrease (72,787) Increase / (decrease) in creditors 288,416 Total funds 872,469 1,202,498 (1,094,574) Net cash provided by / (used in) operating activities 323,528

331,666 160,943 (331,666) 4,943 (5,317) (92,815) 176,712 244,466

Unrestricted funds:

Page 43 18. Analysis of cash and cash equivalents • 18. Replace Analysis of cash and cashequivalents equivalents table with the below; Analysis of cash and cash At 1 April At2015 1 April Cash hand Cashatatbank bankand andinin hand Notice deposits (less than Notice deposits (less than three months) three months) Notice deposits (less than four months) Total cashatand Net assets the cash end of the equivalents year

Sarcoma UK 19. statements Operating lease commitments Financial for the year ended 31 March 2016

2015 £ £ 2,802 675,381

538,536 100,000 -

775,381 541,338

Cash Cash flows flows £ £ 316,568 563,859 862 (163,859)

Other changes Other

changes £ £ 12,844 26,211

39,055

541,338 941,338 980,393

At 31 March At 31 2016 March

2016 £ £ 15,646 991,949

1,128,606 100,862 (163,859)

317,430 400,000

400,000

1,092,811 980,393

The charity's total future minimum lease payments under non-cancellable operating leases is as

Cash at bank and in hand

2,802

12,844

15,646

Notice deposits (less than three months) Notice deposits (less than four months)

538,536

563,859

26,211

1,128,606

(163,859)

400,000

39,055

980,393

Net assets at the end of the year

541,338

19. Operating lease commitments 19. Operating lease commitments Thecharity's charity’s total future minimum payments under non-cancellable leases is as The total future minimum lease lease payments under non-cancellable operatingoperating leases is as follows each of the following periods: follows forfor each of the following periods:

Less than one year

Property 2016 £

Property 2015 £

Equipment 2016 £

Equipment 2015 £

16,049

411

16,049

411

20. Legal status of the charity The charity is a company limited by guarantee and has no share capital. The liability of each member in the event of winding up is limited to £1.

Sarcoma UK Financial statements for the year ended 31 March 2016

Reference and Administrative Details

Company number

7487432 (Limited by guarantee in England and Wales)

Charity number

England and Wales (1139869) Scotland (SC044260)

Registered Office 49-51 East Road London N1 6AH Trustees

Trustees, who are also directors under company law, who served during the year and up to the date of this report were as follows:

Karen Delin Chair Lesley Abraham End of term of office December 2015 Dr Jane Barrett Professor Rob Grimer Leigh Hibberdine Ian Hughes Sharon Reid Helen Stradling David Thompson Passed away March 2016 Dr Jeff White Sam Whittam Glyn Wilmshurst

Patron

Richard Whitehead MBE

Chief Executive

Lindsey Bennister

Senior Management Team

Karen Wines Lucy Alder Sarah McDonald Vicki Smith

Company Secretary

Karen Wines (Director of Finance & Resources)

Bankers

CAF Bank Ltd, 25 Kings Hill, Avenue Kings Hill, West Mailing, Kent ME19 4JQ

Lloyds TSB, National Clubs & Charities, PO Box 1000 BX1 1LT

Solicitors

Brahams Dutt Badrick French LLP, 24 Monument Street, London EC3R 8AJ

Auditors Sayer Vincent LLP Chartered accountants and statutory auditors Invicta House 108 â&#x20AC;&#x201C; 114 Golden Lane London EC1Y 0TL

Sarcoma UK Reference and administrative details for the year ended 31 March 2016

Acknowledgements

The Board of Trustees wishes to acknowledge the following people and organisations for their outstanding support of Sarcoma UK during the past year: Patron - Richard Whitehead MBE Founder - Roger Wilson CBE Sarcoma UK Research Advisory Committee Professor Ian Judson (Chair) BSc MB BS MA MD FRCP Head of Sarcoma Unit and Professor of Cancer Pharmacology, Royal Marsden Hospital, London Professor Penella Woll (Vice Chair) BMedSci MB BS PhD FRCP Professor of Medical Oncology, University of Sheffield Dr Sara Booth MD FRCP FRCPE Honorary Consultant, Associate Lecturer, University of Cambridge Honorary Senior Lecturer at Department of Palliative Care and Policy, Kings College London Mr Paul Cool MD MMedSc (Res) FRCS (Ed) FRCS (Orth) Consultant Orthopaedic and Oncological Surgeon, The Robert Jones and Agnes Hunt Orthopaedic Hospital, Oswestry Mr Anant Desai BA MA MBBS MD FRCS Consultant Surgeon, Midlands Abdominal & Retroperitoneal Sarcoma Unit, Birmingham Dr Sinclair Dundas PhD, MBChB, FRCPath Consultant Pathologist, University of Aberdeen Professor Adrienne Flanagan MB PhD FMedSci Professor of Musculo-Skeletal Pathology, University College London Consultant Histopathologist, Clinical Lead, Royal National Orthopaedic Hospital, London Professor Bass Hassan BSc DPhil FRCP Professor of Medical Oncology, University of Oxford

Professor Ted Hupp PhD Chair of Cancer Research, Edinburgh Cancer Research Centre Professor Lee Jeys MB ChB MSc FRCS Consultant Orthopaedic Surgeon, Royal Orthopaedic Hospital, Birmingham Mr Sam Patton MB ChB FRCSEd FRCS Consultant Orthopaedic Surgeon, New Royal Infirmary, Edinburgh Professor Janet Shipley BSc PhD Team Leader, Sarcoma Molecular Pathology, Institute of Cancer Research, London Dr James Spicer MA FRCP PhD Reader in Experimental Oncology, King’s College London Consultant in Medical Oncology, Guy’s and St Thomas’ NHS Foundation Trust, London Dr Paula Wilson BSc MBChB (Hons) MRCP FRCR Consultant in Clinical Oncology, University Hospitals, Bristol Dr Jayne Wood MBBS FRCP BSc PgDip Consultant in Palliative Medicine, Royal Marsden and Royal Brompton Hospitals, London Clinical Lead, Royal Marsden and Royal Brompton Hospitals, London Professor Galina Velikova BMBS (MD) PhD FRCP Chair of Psychosocial and Medical Oncology, University of Leeds Sarcoma UK Acknowledgements for the year ended 31 March 2016

Acknowledgements

A huge thank-you to all our major supporters.

•• •• •

10 Downing Street The Analyst The Bailey Will Trust The Boom Foundation The Charity of Stella Symons

Corporate supporters

•• •• ••

Aico B&Q Leeds Canada Life Henderson Loggie ITV The Lloyds Bank Foundation

•• •

ShareGift Tay Charitable Trust The family and friends of Carey Lander

•• •• •• •

Nexen Petroleum UK Novartis Penningtons Manches Pfizer PharmaMar Prizes for Good Causes Proactive Prosthetics

•• •• •• •

RBS Rowleys St Ives Takeda Three UK Waitrose Wickens Engineering

Gifts in Kind

•

Touchline – design and production of a Sarcoma UK report.

Group Funds

•• •• •

The Adam Jones Fund The Amy Westlake Fund The Chris Martin Fund The Dave Thompson Fund The Derek Watkins Fund 007

Legacies

•• •

Geoff Barber Penelope Dann Katherine Farr

•• •• •

Hope’s Fund The James Hessey Fund The Leigh Gaskin Fund The Richard Sumner Fund The Sandie’s Stars Fund

•• •

Philip Jones Angela Richards Sandra Seymour

• •• •

The Stephanie Darling Fund The Tom Eckles Fund The Tom McMahon Fund The ULegend Fund

•

Denis Thompson

Individuals who have provided professional support The following people have provided valuable professional support and advice to Sarcoma UK on a pro-bono basis.

•• •

Mark Gould (Director, The Systems Management Company) Jonathan Rennison (Mentor, Institute of Fundraising) Phil Ward (Deputy Director of Research Services, University of Kent)

Other

•

Professor Lee Jeys, Consultant Orthopaedic Surgeon, Royal Orthopaedic Hospital, Birmingham, and Dr Mike Leahy, Consultant Oncologist at The Christie Hospital, Manchester, for chairing Talking Research, June 2015.

Sarcoma UK Acknowledgements for the year ended 31 March 2016

sarcoma.org.uk 020 7250 8271 info@sarcoma.org.uk @Sarcoma_UK uk.sarcoma 49-51 East Road, London N1 6AH Registered as a charity in England and Wales (1139869) and in Scotland (SC044260) â&#x20AC;˘ A company limited by guarantee in England and Wales (7487432)