Target Ovarian Cancer Annual Review 2012-13 1Target Ovarian Cancer Annual Review 2012-13 1

Annual Review 2012-13Our achievements in the twelve months to June 2013

VISITS TO OUR WEBSITE TRIPLED

PUBLISHED THE TARGET OVARIAN CANCER PATHFINDER

STUDY 2012 AND SUPPORTED THE ALL PARTY PARLIAMENTARY

GROUP ON OVARIAN CANCER

at a glance2012-13

50% MORE FUNDS RAISED (£1.5 MILLION)

80% INCREASE IN APPLICATIONS FOR OUR MEDICAL RESEARCH PROGRAMME, THE UK-WIDE GRANTS PROGRAMME FOR OVARIAN CANCER RESEARCH

LAUNCHED OUR CLINICAL TRIALS INFORMATION CENTRE FOR WOMEN AND

CLINICIANS WHO WANT TO FIND OUT MORE ABOUT TRIALS NEAR THEM

WE EXPANDED ALL OF OUR GP TRAINING INITIATIVES. 43% MORE ONLINE GP TRAINING MODULES COMPLETED

CO-FOUNDED WORLD OVARIAN CANCER DAY

8 MAY 2013

8 MAY 2013

Target Ovarian Cancer Annual Review 2012-13 2

CLINICALTRIALS.TARGETOVARIAN CANCER.ORG.UK

Target Ovarian Cancer Annual Review 2012-13 3

2012-13: our springboardIn 2012-13, our fifth year, we aimed high.

We wanted to raise more money than ever before, to reach and support significantly more women with ovarian cancer than ever before, and to convince the government to pilot ovarian cancer symptoms awareness programmes.

We did.

We planned to make our first Medical Research Programme grants, to launch our Clinical Trials Information Centre to help more women access clinical trials and to create more training modules, toolkits and resources designed specifically for GPs and nurses so they can diagnose ovarian cancer earlier and support women with the disease better.

We did all of these things too.

Without our army of volunteers and fundraisers, advocates and supporters (both individuals and organisations) we could not have achieved so much. Our thanks go to each and every one of them.

And yet, despite these numerous successes, ovarian cancer remains a devastating disease. Still every year in the UK, 7,000 women are diagnosed and 4,300 lose their lives too soon.

Our work is vital, it is necessary and it is urgent, but we must not become complacent. Every success must be celebrated and every failure learned from. But we must always remember that achievements like those detailed in this review must only be the beginning.

Together we have made huge strides over the last five years.

Together we can, must and will achieve so much more.

Joanna BarkerChairman, Board of Trustees

Annwen JonesChief Executive

“ Yes, we have cancer, but that doesn’t mean we can’t have goals and dreams too.”Una, one of our passionate supporters

Target Ovarian Cancer Annual Review 2012-13 4

We aimed to achieve much in the 12 months up to June 2013 and our impact has been widespread and significant.

However, despite our best efforts, there is still an urgent need to achieve even more and be even more effective for all women living with and beyond ovarian cancer.

The survival rate for ovarian cancer in the UK is amongst the lowest in

Making an impact

“ Target Ovarian Cancer is an extraordinary and impressive charity which is making a very significant contribution in improving public awareness, early diagnosis and management of ovarian cancer.” Mr Andy Nordin FRCOG Chairman, National Cancer Intelligence Cancer Network, Gynaecological Cancer Clinical Reference Group

Europe and there have been no new life-extending treatments approved in more than 20 years. Were we to achieve the equivalent of what has been achieved in breast cancer over the last 20 years, over 3,000 more women would survive ovarian cancer every year.

That’s why we must address the three biggest barriers to beating ovarian cancer in everything we do: late diagnosis, no new life-

extending treatments and the isolation so often felt by women living with the disease.

And that’s why our organisational priorities are:

• improving early diagnosis

• finding new treatments

• providing support for women.

Target Ovarian Cancer Annual Review 2012-13 5

Improving early diagnosis

We supported the Government’s Be Clear on Cancer programme to plan and deliver the UK’s first-ever official, publicly funded ovarian cancer symptoms awareness programmes at six pilot sites across the UK between January and March 2013.

• We provided expert strategic input, accredited multimedia GP training resources and community ambassadors.

• We advised on the programme message and materials.

• We delivered training for health activists and offered all pilot areas free access to our GP educational resources through the official Be Clear on Cancer website.

We did more award-winning work with GPs.

• With the Royal College of General Practitioners (RCGP), we developed an additional eLearning module to complement our existing ovarian cancer training modules with BMJ Learning.

• We developed an extensive ovarian cancer toolkit for GPs including patient leaflets and symptoms flag pens.

• We promoted our resources directly to GPs themselves, at primary care conferences and via GP training courses.

• There were 7,800 completions of our online GP training modules (43% more than 2011-12), equating to 1 in 5 GPs.

In Scotland, we contributed to the review of ovarian cancer guidance by the Scottish Intercollegiate Guidelines Network (SIGN) and the development of the Quality Performance Indicators [QPI] for ovarian cancer in Scotland.

The challenges Our achievements• Ovarian cancer in the UK is often

diagnosed late, once the cancer has already spread.

• Survival rates are too low but when diagnosed at the earliest stage, survival rates increase dramatically.

• 1 in 4 women wait three months or more before visiting their GP about symptoms and almost 1 in 3 wait six months or more for a correct diagnosis after first visiting their GP.

“ We won’t rest until as many women know to seek help for persistent bloating as they do for a breast lump.”Sharon Hodgson MP, Chair of the All Party Parliamentary Group on Ovarian Cancer

Target Ovarian Cancer Annual Review 2012-13 6

Finding new treatments

The challenges• Funding for ovarian cancer

research, particularly into therapies to improve survival and quality of life for women, remains woefully inadequate.

• Many women with ovarian cancer want the chance to take part in clinical trials, but only one third are being offered any information about clinical trials by their clinicians.

We ran a second funding round for our UK-wide ovarian cancer research programme, receiving 80% more grant applications than we did for the first funding round.

Applications were submitted by most of the leading ovarian cancer researchers in the UK. Grants will be awarded later in 2013. Projects funded during the first round, including research into genetic

Our achievementsSpecial thanks to the Target Ovarian Cancer Scientific Advisory Board Professor Henry Kitchener MD FRCOG FRCS FMedSci (Chairman), University of Manchester Professor Michael Birrer M PhD, Harvard Medical School and Massachusetts General HospitalProfessor Hilary Calvert MB BChir MSc MD FRCP FMedSci, University College LondonProfessor Jonathan Ledermann MD FRCP, University College LondonProfessor Sam H Ahmedzai MRCP FRCPS FRCP, University of SheffieldProfessor Peter L Stern PhD, University of Manchester

“ I would absolutely recommend women to take part in trials if they feel it is right for them, otherwise we won’t get any further as far as treatment is concerned.” Rona, who took part in a clinical trial

testing (University of Cambridge), symptoms control (University College London) and drug resistance (University of Oxford) all began during the past 12 months.

We launched our Clinical Trials Information Centre, a single online information resource for clinicians and women with ovarian cancer, containing details of all ovarian cancer clinical trials in the UK. http://clinicaltrials.targetovariancancer.org.uk

Clinical trials are vital to finding new treatments and evidence shows that people who take part in trials have better outcomes than those who do not, regardless of whether they receive an active drug or a control drug or placebo.

Together with the Medical Research Council, we funded a clinical research fellowship in ovarian cancer.

Target Ovarian Cancer Annual Review 2012-13 7

The challenges• Our Pathfinder Study shows that

the emotional and practical needs of women with ovarian cancer are often not met.

• Two-thirds of women have needed emotional support at some point since their diagnosis, at different points of the pathway.

• Most Clinical Nurse Specialists only offer support at one key point, most commonly at diagnosis.

Our achievementsWe reached significantly more women with ovarian cancer and extended our unique programme of supportive services (face-to-face events, publications, regional networks, advocacy training, online networks and social media).

• Unique visitors to the “I have ovarian cancer” sections of our website doubled to 9,000.

Providing support for women• We distributed specialist guides to

5,000 women with ovarian cancer. In 2011-12 we distributed 3,000.

• We ran eleven specialist support events and courses for women living with ovarian cancer across the UK.

• We created Looking After Me, a specialist guide written for and with women with a terminal diagnosis of ovarian cancer, in partnership with the Hospice of St Francis in Berkhamsted.

• With Penny Brohn Cancer Care, we ran a residential course for younger women with ovarian cancer.

• In north-west England we completed the pilot of a regional survivorship network to support and facilitate engagement between women with ovarian cancer.

• We drew up plans for a sustainable self-management network in Scotland, run with and for women with ovarian cancer.

We launched our Clinical Nurse Specialist Hub, an online ‘one-stop shop’ for information on new ways of working, best practice and resources to help nurses better support women with ovarian cancer.

Gemma, who attended a residential course for young women with ovarian cancer

“ I was feeling like I was the only person my age to have this type of cancer. I felt isolated even when I had people around me. Now, the emptiness caused by feeling isolated has gone.”

Target Ovarian Cancer Annual Review 2012-13 8

Other highlights of the year

With thanks to the Target Ovarian Cancer Pathfinder Study Advisory Panel

Professor Robert Haward (Chairman) Dr Laurence Brown Dr Tracie Miles Dr Alison Farmer Professor Willie Hamilton Dr Kim Hawker Dr Sean Kehoe Professor Henry Kitchener Professor Jonathan Ledermann Gillian Luis-Ravelo Robert Luxton Professor Iain McNeish Mr Andy Nordin Lindy Waldron Howard Webber Joanna Barker Annwen Jones

We announced the results of our Pathfinder Study 2012 in Parliament to policy makers, clinicians, commissioners, GPs, nurses, cancer networks and women with ovarian cancer.

There were many positive outcomes of publishing our study:

• We got significant media coverage around early diagnosis, raising awareness of the symptoms of ovarian cancer.

• We met the Public Health Minister to discuss extending the Be Clear on Cancer programme to regional pilots in England in 2013-14.

• The Health Committee of the Northern Ireland Assembly hosted a debate on ovarian cancer and called upon their Health Minister to consider a national awareness campaign around ovarian cancer, which he committed to.

“ To discover that there was so much support for women with ovarian cancer was such a relief for me.”Response to our first-ever supportive services impact evaluation

We helped the All Party Parliamentary Group on Ovarian Cancer raise the profile of ovarian cancer in Parliament and raise issues of concern with government and policy-makers.

We secured 400 national and local media print stories, as well as significant television, radio and online coverage.

We continued our partnership with woman&home and Woman magazines, securing extensive coverage in both.

Traffic to our website tripled while our audience profiles on Facebook, Twitter and You Tube also increased substantially.

We co-founded World Ovarian Cancer Day (launched 8 May 2013) with other ovarian cancer charities across the world.

We launched our printed newsletter, On Target, to better support the high proportion of women we work with, who are not online.

Target Ovarian Cancer Annual Review 2012-13 9

Not stopping there

• influence relevant health authorities to roll out the Be Clear on Cancer ovarian cancer symptoms awareness programme at a regional level in England, and influence key individuals and organisations in Scotland, Wales and Northern Ireland too

• increase uptake of our GP online educational tools in partnership with the Royal College of General Practitioners and BMJ Learning to 25% of all GPs across the UK, to help reduce the delays in diagnosis faced by women with ovarian cancer

• expand our UK-wide research grants programme and fund more grants

• reduce isolation through more face-to-face events, publications, regional networks, advocacy training and social media

2012-13 was an exceptional year for Target Ovarian Cancer, but we’re not resting on our laurels. We are certainly making progress, but there is still so much more that we want to do, and must urgently do, to improve the lives of every woman living with and beyond ovarian cancer.

• extend the reach of our Clinical Trials Information Centre to give all women better access to trials of new treatments

• support Clinical Nurse Specialists to provide emotional and practical support to women with ovarian cancer through our Clinical Nurse Specialist Hub and other initiatives

• expand our activities in Northern Ireland, Scotland and Wales

• continue our role as Secretariat to the All Party Parliamentary Group on Ovarian Cancer and support its work to raise the profile of ovarian cancer in Parliament and highlight issues of concern with Government and other policy makers.

“ Meeting women who had undergone the journey through cancer that I was just starting made me realise that I was not alone, that their experiences and strength could help and support me at this frightening time.”

Our plans for the futureDuring 2013-14 we will:

Gail, who attended a Being Together day

Target Ovarian Cancer Annual Review 2012-13 10

Phenomenal fundraising

Legacies £9,130

Community fundraising & events £597,031

Gifts from individuals £697,398

CharitableTrusts £152,422

Donated services £72,675

Other £24,711

• Walk for One Million, our 10km walk in association with woman&home and Woman magazines, exceeded our expectations, raising more than £165,000 in its first year.

• Inspired by our 50s Challenge, supporters held wedding dress balls, vintage tea parties, coffee mornings and more during Ovarian Cancer Awareness Month, raising £60,000.

• Our fifth annual Loving Linda comedy gala was another resounding success, raising £26,000.

• Our runners, jumpers, cyclists, trekkers, and skydivers together raised more than £100,000.

• We would like to thank the wonderfully generous individuals and families who have supported our work this year. Also, the support from a number of Charitable Trusts in our programmes has allowed us to continue our work and plan for the future.

• We are also delighted to have received support from a number of companies, raising money for us in a variety of imaginative ways.

“ What an inspiring day we had and such fun. I should have raised nearly £500 if not more so I hope that will go a good way towards research and other areas. What a worthy cause!”Kate, Walk for One Million participant

Income £1,553,367

Thanks to the amazing support we received from so many people and organisations, an enormous £1,553,367 was raised during 2012-13 – 51% more than during 2011-12 (£1,029,906).

Target Ovarian Cancer Annual Review 2012-13 11

Smart spendingThe combined expenditure on services providing support for women living with ovarian cancer and activities to improve early diagnosis increased by 7% to £533,105. This extra spending reflected our drive to reach more women with ovarian cancer and healthcare professionals.

Research spending associated with finding new treatments came

This summary of financial information is extracted from the Annual Report and Accounts for the year ended 30 June 2013. It may not contain sufficient information to allow for a full understanding of the financial affairs of the charity. For further information, the full financial statements, the auditor’s report on those financial statements and the report of the trustees should be consulted. Copies of these can be obtained from: 30 Angel Gate, London, EC1V 2PT. The Annual Report and Accounts were approved on 3 October 2013 and were delivered to the Charity Commission. The financial statements have been audited by a qualified auditor, KPMG LLP, who gave an audit opinion that was unqualified.

On behalf of the Board of Trustees. Joanna M Barker, Chairman, Board of Trustees, 3 October 2013.

Improving early diagnosis £134,669

Providing support for women £398,436

Finding new treatments £279,325

Governance costs £33,235

Fundraising costs £418,624

Publicity costs £45,025

to £279,325. The small decrease compared to last year reflects the need to phase funding for the three research projects currently granted funding by Target Ovarian Cancer. We will award funding to further research projects in November 2013.

While fundraising income increased by 51%, combined spending on fundraising and publicity increased by only 14% to £463,649.

The investment in fundraising is vital to make sure the charity is sustainable and able to continue growing. For every £1 spent on fundraising, £4.05 was raised.

Our success in raising more money than we had to spend during 2012/13 meant we ended the year with a surplus of funds. We will invest the surplus funds raised into our future work.

“ Ovarian cancer is a devastating disease. We are pleased that we are making progress, but there is so much more that we need to do, and urgently, to help improve the life chances of woman with ovarian cancer.”Annwen Jones, Chief Executive, Target Ovarian Cancer

Expenditure £1,309,314

Target Ovarian CancerTarget Ovarian Cancer is the national ovarian cancer charity working to save lives and help women diagnosed live their lives to the full, wherever they are in the UK.

We do this by:

• improving early diagnosis• finding new treatments• providing support for women

Find out more:

© Target Ovarian Cancer 2013Target Ovarian Cancer is a company limited by guarantee, registered in England and Wales (No. 6619981). Registered office: 30 Angel Gate, London EC1V 2PT. Registered charity numbers: 1125038 (England and Wales) and SC042920 (Scotland).

Target Ovarian Cancer30 Angel Gate, London EC1V 2PT

020 7923 5470

info@targetovarian.org.uk

www.targetovariancancer.org.uk

Find us on Facebook: www.facebook.com/TargetOvarianCancer

Follow us on Twitter: @targetovarian

Have you been inspired by what you’ve just read?If you’d like to help, email fundraising@targetovariancancer.org.uk call 020 7923 5474 or visit www.targetovariancancer.org.uk/donateThank you.