Let s talk. Scotland. Rona. I want Scotland to lead the way in making sure all women know about ovarian cancer and can spot the symptoms.

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1 Target Ovarian Cancer Our website is packed with more information: Telephone: Follow us on Facebook and Twitter: Target Ovarian Cancer is the national ovarian cancer charity working to save lives and help women diagnosed live their lives to the full, wherever they live in the UK. We do this by: improving early diagnosis finding new treatments providing support for women We provide support for women with ovarian cancer via our website, our publications, and our programme of events and courses. We work with women, their families and friends to campaign for improving early diagnosis and finding new treatments. Let s talk Scotland I want Scotland to lead the way in making sure all women know about ovarian cancer and can spot the symptoms. Rona Target Ovarian Cancer May 2012 Target Ovarian Cancer is a company limited by guarantee, registered in England and Wales (No ). Registered office: 2 Angel Gate, London EC1V 2PT. Registered Charity numbers (England and Wales) and SC (Scotland).

2 Are you ready to talk? Let s Talk Scotland is a guide for women who want to use their experiences to change things. Maybe you may feel that part of the care you received could be improved? For example, maybe you were concerned about the lack of access you had to peersupport, a specific treatment or a nurse specialist? This guide will show how you can campaign to improve these services for women in the future. Only 1% of women in Scotland feel very confident about spotting a symptom of ovarian cancer. This guide will show how you can raise awareness of ovarian cancer, so more women have the chance to detect it early. Finally, this guide will highlight how you can raise funds to ensure the vital work of charities like Target Ovarian Cancer continues. Published by: Target Ovarian Cancer 2 Angel Gate, City Road London EC1V 2PT Tel: info@targetovariancancer.org.uk Website: Copyright May 2012 Meet June. June has raised awareness of ovarian cancer by organising a charity ball with the help of friends and family, plus a sponsored leg waxing event for men! Find out how you can join June in bringing ovarian cancer out of the shadows. As well as spreading the word in my local community, the ball raised over It was a great night I couldn t believe it, everyone was so generous. Target Ovarian Cancer would like to acknowledge the support of the Long-Term Conditions Alliance Scotland and the Scottish Executive for this publication. LONG -TERM CONDITIONS A L L I A N C E S C OT L A N D people not patients 1

3 Meet Jane. Jane is quite used to telling her story as she s appeared in a number of local and national papers. I couldn t understand why my tummy was getting bigger and bigger. Over a period of a few weeks it became enormous and I looked like I was pregnant. People kept asking me when my baby was due! I was lucky, my GP spotted it right away and within 8 weeks I had an operation to remove the tumour. By this time it had grown to 1.5 stone! I can t believe how lucky I was to have my cancer diagnosed early. I count my blessings every day and use my free time to tell my story to as many people as possible. I want make sure all women know how to spot the signs. I ve told my story to local papers, the Daily Record and even Take a Break magazine. It s not always easy to talk especially about a subject matter that has affected you so personally. Yet your personal experiences are what make you the best candidate to make people listen and take notice. Your voice is powerful. With it you can form and change the opinions of others and provide vital information that might one day save someone s life. Here are a few quick tips to speaking out. What do you want to achieve? Have a specific goal in mind and try and keep it simple, for example: raise awareness of ovarian cancer in my local community campaign for better access to nurse specialists in my health board region Know your facts If you understand why it s important to raise the profile of ovarian cancer or improve a specific service, others will listen to you and take you seriously. The next page outlines some of the key facts. Make it personal Don t be afraid to tell people your story. Health Boards and MSPs need to hear from local women. Your words can help to make things better for women in the future. Ovarian cancer: understanding the facts Each year in the UK 6500 women will be told they have ovarian cancer. This is twice as many cases as cervical cancer In Scotland 615 women a year will be diagnosed with ovarian cancer and sadly 400 women lose their lives When ovarian cancer is diagnosed at the earliest stage; survival can be as high as 70%. The UK s five year survival rate is 36% Early diagnosis saves lives There is no national screening programme in Scotland or anywhere else in the UK Cervical smear tests do not detect ovarian cancer Symptoms of ovarian cancer Symptoms of ovarian cancer are frequent (generally occurring more than 12 times a month) and persistent, and include: Difficulty eating/feeling full Pelvic or abdominal pain Increased urinary urgency and/or frequency A persistent swollen tummy/abdominal distension Other symptoms can include unexpected weight loss, change in bowel habits, and extreme fatigue. Meet Catherine. Catherine s ovarian cancer was misdiagnosed for two years. I knew something wasn t right. I kept going back to my GP but they were convinced it was irritable bowel syndrome. In the end I was diagnosed with ovarian cancer, but I was already at stage four. My diagnosis was late. If I had known the signs I could have done something about it. I could have asked for a blood test and a scan, but I knew nothing about ovarian cancer. Raising awareness is key. Other women shouldn t have to go through what I have been through. I try and do my bit by posting leaflets in my local community and working with Target Ovarian Cancer to help spread the word. If you regularly experience any of these symptoms, which are not normal for you, it is important that you see your GP. It is unlikely that your symptoms are caused by a serious problem, but it is important to be checked out. 2 3

4 Become a campaigner If you re not happy with a service you receive or the care you get, you might be able to do something about it by letting the right people know what the problem is and persuading them to change things. 1 2 Catherine s campaign plan might look something like this: Goal: to increase coverage of the nurse specialist telephone service. Find out if local women in my area are experiencing the same problem. Sometimes I feel like I want to talk to my nurse specialist over the phone say on a Saturday, but she s only available on Monday to Thursday during office hours. It would be good to campaign for better coverage. Catherine 3 Contact my NHS health board to see if there is a plan to increase cover and if not why not? 4 My daughter is concerned that she may have inherited ovarian cancer. She is going to be monitored to ensure that if she is at risk, the cancer is caught early. June Who is at risk? Women of any age can develop ovarian cancer, although most women develop it after the age of 50. Generally, the older you are, the greater your risk Ovarian cancer can run in families. If anyone has a family member with ovarian cancer (mother, sister, grandmother or aunt), it would be a good idea for them to speak to their GP about their family history For more details about ovarian cancer in families, visit our website: ovariancancerinfamilies 4 5 Contact my MSP to explain the issue and the impact it has on me and others. Contact my local newspaper and tell them about the problem. Make contact If you have a specific health service problem, you can contact your local NHS health board. If this doesn t have the impact you were hoping for, you can contact your local MSP. If the issue is a local issue, such as a lack of transport to your local cancer centre; you can contact your local councillor. Contact details for each of the above can be found at the end of this guide. If you want to make contact with women in your local area with ovarian cancer you can: ask your nurse specialist if they run a support group locally contact Target Ovarian Cancer and see if we know of any local groups work with us to establish and maintain Target Ovarian Cancer s regional network in Scotland 5

5 Get involved Make your words count Sometimes it s hard to know where to start when writing to a politician. Here are our top tips to getting it right. Clearly and concisely summarise your issue Ensure the letter is in your own words and from the heart Explain why the issue is important to you and to others Provide the facts and figures to support your words, see understanding the facts on page 3 Describe what could be done or what is needed to improve your situation Ask how your MSP to take some steps to help. For example: meet with you so that you can explain the issues; show support by attending an event you are organising; or ask a question in the Scottish Parliament about what is being done to raise awareness of ovarian cancer in Scotland Encourage the reader to join the Cross Party Group on Cancer (see page 7) Add I look forward to hearing from you as a polite request for a response Perhaps you don t have a specific issue that you would like addressed instead you d simply like to get involved in the development of cancer services. There are a number of ways you can do this You can respond to Government consultations. The Government website lists all public consultations on potential policy change. Anyone can respond to these consultations. The list includes everything from flood management to the commonwealth games. The trick is to keep an eye on the list and look out for anything that interests you. You can join the Cross Party Group on Cancer. Cross-Party Groups provide an opportunity for MSPs of all parties, members of the public and outside organisations to meet and discuss a shared interest in a particular cause or subject. You can contact your local Health Board. Ask if there are any patient groups or networks that are working to improve cancer services that you could join. You can join the Long Term Conditions Alliance Scotland (LTCAS) Involvement Network. This network consists of a group of volunteers who would like to help LTCAS make the voice of people with long term conditions heard by policy makers and decision makers. There are so many ways to get involved. I heard about the Scotland Against Cancer Conference after attending a Target Ovarian Cancer event. I am planning to go along. Nicola Sturgeon (Cabinet Secretary for Health and Wellbeing) will be there and there will be an open forum. I have a few questions in mind. June Links to the Government s website, the Cross Party Group s website, the Health Boards websites and LTCAS can be found in the contacts and links section of this guide. 6 7

6 Meet Rona. Rona is campaigning for improved diagnosis of ovarian cancer. I had classic ovarian cancer symptoms, but didn t have a clue what was happening to me. My GP was very observant and spotted a huge cyst in my abdomen. When I had it removed they found a tumour too. I was lucky, I was diagnosed early. Not everyone is so lucky, so I m trying to change things. I ve spoken to my local head of council and they are going to pass a letter on to our health secretary. I m asking that if any woman attends her GP service with one symptom of ovarian cancer she is screened with the CA125 blood test and has an ultrasound. I want Scotland to lead the way in diagnosing ovarian cancer early, so more lives are saved. Don t forget to order our symptom leaflets to help raise awareness! Raising awareness of ovarian cancer All of the women featured in this guide have raised awareness of ovarian cancer in one way or another. If they can do it so can you! There are so many ways of raising the profile of ovarian cancer and helping women learn about the symptoms. Here are a few examples to get you started. Target Ovarian Cancer worked with the British Medical Journal to develop a GP education tool designed to help GPs detect the symptoms of ovarian cancer. You could talk to your GP and tell them about our website where they can find more information My big plan is to tell every single woman in the UK who works for Sainsbury s about ovarian cancer. I m planning a talk at the branch I work at. The plan is to get leaflets distributed across all branches. It ll be amazing if this happens. Jane You could organise a talk at your social club or workplace and invite women to come along to learn about your experiences and the symptoms of ovarian cancer. You could also spread the word within your local community. Libraries, shops, hairdressers, faith groups are all places where you could leave some leaflets or put up a poster You could work with us to build Target Ovarian Cancer s Scottish Action Network and connect with our team of women who are making some big changes right here As well as catching up with friends, you can use Facebook or Twitter to tell your contacts about ovarian cancer and with just one click you can send the list of symptoms to everyone you know Target Ovarian Cancer can provide leaflets and posters to help you on your way. I became a patient representative because I think it is important for patients to gain insight into the way in which our medical system works so that a reasoned and informed contribution can be made. This helps to benefit patients through improvements in the quality and safety of care. The very presence of patients in committee rooms has an affect on policy choices. I believe it is about establishing partnership. It is not about personal agendas, but about suggesting alternative ways in which processes might improve the patient experience. Angus Ogilvy, Patient Rep, South East Scotland Cancer Network 8 9

7 Contacting the media Talking to journalists Fundraising 10 One of the most powerful ways of raising awareness is reaching people through the media. You may want to highlight an upcoming event or share your story with others. Contacting your local newspapers is a good way to start often the bigger papers will pick up stories from here and may well contact you after reading your piece. Here are a few pointers for getting your words in print. Send a press release to your local papers. This is brief summary of what you d like the paper to cover Keep it short, snappy and to the point, no more than a page long Make it clear why it s relevant to the newspaper, for example because you re a local person or because the event is happening in their local area Make it personal. Newspapers like to cover stories about people You can add a second page with supporting information, usually titled Notes to editors. This should contain the facts about ovarian cancer (page 3) and a link to our website for further information Don t forget to include a quote and your contact details It s best to a press release and send it as part of your , rather than an attachment You could also send a letter to the editor after an event to say thank you to everyone who came, or to share the total amount raised Speaking to a journalist can be quite daunting. Try to plan ahead to make sure you say all the things you want to say. If the journalist is looking for a short quote, keep to the point so the most important thing you want to convey is included. If you are being interviewed for a feature, write down the main points you want to include so you don t stray too far from your main message. Most of all don t panic it isn t in the journalist s interest to be difficult or make you look bad. They are speaking to you because they are interested in your story. If you would like to use your experience to raise the profile of ovarian cancer and appear in a national newspaper or magazine please get in touch with us at info@targetovariancancer.org.uk or The first couple of times I spoke to a journalist I was really nervous. But I m so passionate about ovarian cancer, once I get going I can t stop blabbing. Jane If you would like to raise money to support the work of Target Ovarian Cancer there are many ways in which you can do this. This is how June and Jane did it: I ve organised a Zumbathon, a 10 mile walk and a 1950 s swing dance, all to raise money for Target Ovarian Cancer. Jane I didn t send Christmas cards this year. I ed friends and family and used this as a way of raising money. June Whether you re planning a coffee morning with friends, a collection at your local shopping centre or you have a bigger event in mind, the fundraising team will be happy to hear from you to discuss any ideas you have. They can also provide you with practical advice as well as materials such as collection boxes, sponsorship forms, T shirts, balloons and pin badges. To speak to a member of the fundraising team, call or fundraising@targetovariancancer.org.uk For more information about fundraising for Target Ovarian Cancer and to find out if any events are taking place in your local area, you can find information on our website at fundraising 11

8 A big thank you from Target Ovarian Cancer! Whether you put up a few posters in your community or plan a large scale campaign for improved services, you ll be making a big difference. We hope that reading this guide is just a start and you feel motivated and ready to make some noise and get women talking about ovarian cancer. Contacts and links Target Ovarian Cancer: Long Term Conditions Alliance of Scotland: Local MSP or local councillor: Scottish Government Consultations: Local NHS health board: Cross Party Group on Cancer: 12