News from Target Ovarian Cancer. Summer Supporting women. Clinical trials. Fundraising heroes

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1 News from Target Ovarian Cancer Summer 2013 Supporting women Clinical trials Fundraising heroes

2 Inside this issue... News Target Ovarian Cancer launches its very first newsletter, produced especially for its supporters. Welcome Welcome to our newsletter, which we hope will keep you up to date with our work to improve survival and quality of life for women diagnosed with ovarian cancer. At a time of fundamental change in the NHS, we re taking every opportunity to ensure that outcomes for women with ovarian cancer continue to improve. Across the UK, we re moving ever closer to our goal of ovarian cancer public awareness campaigns. We re also launching two exciting initiatives - our new Clinical Trials Information Centre to help improve women s access to clinical trials in ovarian cancer, and a new partnership with the Royal College of General Practitioners to help GPs diagnose ovarian cancer earlier. Welcome 2 News: World Ovarian Cancer Day 3 News EXTRA: New e-learning for GPs 5 In detail: Why clinical trials are so vital 6 Support us: Walk for One Million 8 Target on: Campaigning for awareness 10 Supporting you: One woman s campaign Target Ovarian Cancer 30 Angel Gate, London, EC1V 2PT Women around the world unite for WOCD Ovarian cancer organisations across the globe came together with thousands of women with ovarian cancer and their families and friends to mark the very first World Ovarian Cancer Day on 8 May The day was an opportunity for us all to stand together in our combined fight against ovarian cancer. With your support we can help make next year s event even bigger and even better! Further funding for clinical trials Thanks to funding from Target Ovarian Cancer, hospitals in Coventry, Leeds and London have joined Yeovil District hospital in running the Symptom Benefit trials. The trials will investigate to what Huge thanks for your amazing support. info@targetovarian.org.uk extent chemotherapy relieves the With best wishes symptoms of ovarian cancer in women Annwen Jones whose cancer has returned or not Chief Executive TargetOvarianCancer responded to treatment. Without funding from us, women in the could not take part. 2 On Target Welcome News On Target 3

3 NICE decision on cancer drug is anything but nice The National Institute of Health and Care Excellence (NICE) has rejected the use of Avastin (Bevacizumab) for both the first and second line treatment of ovarian cancer, on the grounds of cost in England and Wales. The drug will be available to women in England, through the Cancer Drugs Fund, but only for women diagnosed up to The Scottish Medicines Consortium rejected its use earlier this year. Supporting our GPs together Target Ovarian Cancer and Macmillan Cancer Support are co-producing 10 Top Tips to help women experiencing symptoms and GPs communicate more effectively. We ve brought together women with ovarian cancer and GPs to have open discussions about what works well, and what might get in the way of a speedy, correct diagnosis. That information will form the basis of the 10 Top Tips. They will be published shortly, and we hope to continue our joint working in this area. Keep reading On Target for updates. Frances Reid, our Director of Public Affairs and Communications said: Avastin is the first drug to make a significant clinical difference in a generation. It s deeply frustrating that women around the UK cannot get it routinely through the NHS. The cost of new drugs is a problem that won t go away, so we are strongly urging the Government to make clear its plans for access to such drugs for women diagnosed in 2014 and beyond. We hope that the complementary skills and experience of our two organisations will help to improve diagnosis for women with ovarian cancer. James Austin Macmilan Cancer Support Target Ovarian Cancer and the Royal College of General Practitioners (RCGP) have co-developed new e-learning designed specifically for GPs. News EXTRA: New e-learning for GPs to help them identify signs of ovarian cancer sooner Too many women do not get a correct diagnosis of ovarian cancer early enough. A third wait six months or more for a correct diagnosis from their GP, with symptoms often being mistaken for much more common but less serious illnesses. Our aim is to reduce these delays as much as possible. The e-learning has been designed to help GPs spot when common symptoms, such as bloating, could be caused by ovarian cancer, said Dr Sharon Tate, Public Affairs Manager at Target Ovarian Cancer. It helps them identify the subtleties in symptoms that differentiate them from those associated with more common but less serious conditions such as irritable bowel syndrome (IBS), urinary tract infection or ovarian cysts. By focusing on the symptoms commonly seen in primary care we hope it attracts a wide GP audience. Many more GPs will know when to consider ovarian cancer as a possible cause for symptoms so more and more women get the earliest diagnosis possible. Professor Nigel Sparrow Royal College of General Practitioners (above) Fact finder Our previous award-winning online learning modules have already been completed by more than 6,500 GPs across the UK. GPs can access our free e-learning module, Bloating and other abdominal symptoms: could it be ovarian cancer? at Call us for a flyer and pen to give your GP: On Target News News On Target 5

4 In detail Clinical trials: a personal perspective Why clinical trials are so vital This month, Target Ovarian Cancer has launched its new Clinical Trials Information Centre, a single online information resource containing details of all clinical trials open to women with ovarian cancer in the UK. Clinical trials are essential for the development of new, safe and effective ovarian cancer therapies. There have not been any new life-extending treatments in the past 20 years. There is an urgent need for progress. To make such progress we need more women involved in more clinical trials. However lack of accessible and locally relevant information is a big hurdle to be overcome. That s why we ve launched our new Clinical Trials Information Centre. We hope the Centre will encourage women and medical professionals to talk openly about clinical trials locally and further afield. Our Information Centre gives them the tools they need to do just that, 24 hours a day, and all easily accessible via computer, tablets and smartphone, or to print. More participants mean trials can be completed more quickly. And more trials should mean more lives are saved. Indeed, if we matched the achievements in breast cancer in the last 20 years, over 3,000 more women would survive each year. Rona Passmore is featured on our new Clinical Trials Information Centre. She was diagnosed with ovarian cancer in 2008, and took part in a clinical trial after planning treatment with her consultant. I ve actually had quite a positive experience which sounds quite strange but I was treated well throughout, I was well monitored while taking part in the trial and through all my treatment. I would absolutely recommend women to take part in trials if they feel it is right for them. Certainly I was very keen to take part in it because I want to try and increase the different drugs that are available for use with ovarian cancer. I find it a very important thing for ladies to take part in this because otherwise we won t get any further as far as treatment for this is concerned. I would absolutely recommend women to take part in trials if they feel it is right for them. Fact finder In 2012 only 30% of women with ovarian cancer were asked if they would like to enter a clinical trial (down from 39% in 2009). Only 24% of women initiated discussions about clinical trials themselves, but once clinical trials were mentioned nearly 90% of those asked to take part said they would consider it. In fact, 66% ended up doing so. 6 On Target In detail cancer.org.uk Rona Passmore (above) In detail On Target 7

5 Join us for our annual 10km walk which this year takes place at Hatfield House in Hertfordshire on Saturday 5 October. Get involved: Walk for One Million Last year we raised more than 165,000, which has provided invaluable funds enabling us to carry out the work you read about in this newsletter. With your help we hope to raise even more this year so that we can reach more women and fund more vital research. All we ask is that you aim to raise a minimum of 150. Sign up today, visit call or walk@targetovarian.org.uk Get inspired: our fundraising heroes Back on my feet In April Raf Bauer (right) completed a 350km solo hike along the Cape Wrath trail through the wilderness of Scotland to raise funds for Target Ovarian Cancer. To gain sponsorship and raise awareness of ovarian cancer, Raf created a website where people could upload messages of support for their mums. The website ( has gone on to win a prestigious Do-Gooder Change Agent award for speaking out about the lack of awareness of ovarian cancer. If this can raise awareness and funds to help just one more woman to fight ovarian cancer, I ll be the happiest man on earth, he says. Get involved: Fife walk, 24 August 2013 Supporter Jane Alexander is organising her third annual walk along the Fife coastal path in aid of Target Ovarian Cancer. The 10-mile route follows the coast from Anstruther Golf Course to Shellbay. Entry is just 25 per person and includes an exclusive event t-shirt, entry to the grounds at Hatfield House plus afternoon tea in the Old Palace when you finish. The event is being supported by Woman and woman&home. You can sign up as an individual or as a team. Teams can be any size and every fifth person can register for free! We had nearly 30 friends walk with us on that day and raised in excess of 10,000! Claire Kearney (right) Plan your own walk If you would like to organise your own sponsored walk we have a Walk for Target Ovarian Cancer pack which includes everything you need to know about organising a successful walk. To order yours, contact us using the above details. Braving new heights On 18 May, Sarah Crockford and friends took on a 418ft abseil challenge to raise funds for Target Ovarian Cancer. So far she s raised more than 13,000 an amazing achievement! Laughs for Linda The Loving Linda comedy gala, in memory of comedian Linda Smith, returned for the fifth time to the Rose Theatre in Kingston on Sunday 12 May with a stellar line-up of comedians including Jenny Eclair, Phill Jupitus, Barry Cryer and Andy Hamilton. We are delighted that 26,000 was raised on the night, bringing the total now raised to more Get involved: Alps trek, June 2014 Take part in a breathtaking 65km trek through the Mont Blanc region of the Alps, crossing three countries in three days. Registration costs 149 and we ask you to raise a minimum of 1,725. To find out more or register for either of these events contact Flora on fcolmar@targetovarian.org.uk or call than 125,000! 8 On Target Get involved Get inspired On Target 9

6 The Target Ovarian Cancer Pathfinder Study (2009 and 2012) shows that awareness of the symptoms of ovarian cancer is woefully low. We need national awareness campaigns. But how close to that goal are we? Yes, we have cancer, but that doesn t mean we can t have goals and dreams too. Una Crudden (below) Fact finder Just 3% of women in the UK know that increased abdominal size is a symptom of ovarian cancer. 17% now recognise bloating as a symptom (it was only 9% in 2009) but we still have a long way to go compared to breast cancer awareness. Target on... campaigning for awareness Efforts by cancer charities like us, especially during Ovarian Cancer Awareness Month each March, have had a positive impact, but we need to make awareness rise more quickly. We need national awareness campaigns. But how close to that goal are we? In England we ve seen ovarian cancer awareness pilots in six local areas under the Be Clear on Cancer campaigns, and we re lobbying with the All Party Parliamentary Group on Ovarian Cancer to have those campaigns trialled at a regional level and to include TV advertising. Scotland runs its Detect Cancer Early programme, but this is currently still limited to breast, lung and bowel cancer. We are calling for this to be extended to include ovarian cancer, particularly on the release of new guidance for GPs in Scotland this summer. We are working to secure similar progress in Wales, but as yet they lack any cancer awareness initiatives. With your help, we can do so much more. To get involved contact our Director of Public Affairs and Communications, Frances Reid, on freid@targetovarian.org.uk Individuals like you can make all the difference The efforts of just one woman got ovarian cancer included in a high-profile awareness campaign. Una Crudden is one of Target Ovarian Cancer s most passionate supporters. Having attended numerous meetings, addressed Belfast City Council and taken part in various TV, radio and newspaper interviews, her tireless campaigning inspired Northern Irish Assembly Members to include ovarian cancer in a major cancer awareness campaign. The campaign is due to be run by Northern Ireland s Health Protection Agency in autumn this year. Una was misdiagnosed in Her cancer has since returned twice. She told us: Five of us were diagnosed together. Each of us was misdiagnosed with Irritable Bowel Syndrome. I m the last one left. I hope my story will empower people to go for what they believe in and make it happen. It s been an amazing journey I ve discovered gifts I never knew I had. 10 On Target Target on Supporting you On Target 11

7 2013 Saturday 5 October Hatfield House, Hertfordshire in association with Taking steps to beat ovarian cancer Register for our 10k walk today at: or call Target Ovarian Cancer: registered charity numbers (England and Wales) and SC (Scotland). Registered Office: 30 Angel Gate, City Road, London. EC1V 2PT