Ovarian Cancer - Symptoms Awareness Raising

Ovarian Cancer - Symptoms Awareness Raising

Dear friends

Is anyone else confused by the apparent duplication and competition amongst Ovarian Cancer charities?

It was recently brought to my attention that at least 3 of the UK-wide Ovarian Cancer charities are producing and distributing their own literature to raise awareness of the symptoms of Ovarian Cancer.

We're all aware of the constraints on funding these days and many of us are actively supporting these charities by volunteering or raising funds so we want our hard-earned cash to be spent well.

I should just like to make a call for charities to work together on Awareness-Raising Leaflets and to stop duplication. Would it be possible, I wonder, for the major Ovarian Charities to work together to identify the audience for each type of leaftlet and then to produce joint flyers for each audience. It must make sense cost-wise and to reach out to the maximum number of people. Surely this is the purpose of the flyers?

The joint literature could bear all their logos and contact details.

Am I alone with this thought?

24 Replies

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  • I fully agree with you Annie, although Im not a very clever person even I can see its silly to duplicate leaflets. In my opinion the three groups should all get together and say 1 group do leaflets. If they all pulled together there would be so much more money for research, I thought charity ment charity not who is the best group. If all the groups got together they could call themselves " Cancer United " And their slogan could be WE ARE UNITED TOGETHER TO FIGHT OVARIAN CANCER. . Maybe you could do something write to them all and maybe put all your points across. You have a way of putting things you should have been our second lady priminister. ( I know some spellings are wrong as I am on my daughters PC and I cant find her spell checker. )

    Ps the weather here is cold and very wet I got caught in hail stones on my way back from play group,

    Love Babs x x

  • Dear Babs,

    Thanks so much for your post.

    This point was raised very eloquently at Ovacome's AGM - not by me I should add. We're aware that 2 emails have been sent to the CEO of Ovacome about this but neither correspondent received a reply which is disappointing and there was no rationale explanation given at the AGM except that Ovacome believe Target's literature is not properly researched. It seems to me if that's the problem the charities should work together to agree what symptoms should be listed and get a joint flyer done.

    I have spoken to Gilda Witte who's the CEO of Ovarian Action. This charity are involved in laboratory/hospital research but they also do some awareness-raising. Their leaflets are blue with a photo of a lady on the front. Target is the only charity to date that have an awareness-raising flyer translated into Welsh. There's is pink, maroon and white. Ovacome have those excellent BEAT cards and pale turquoise and pink flyers. Unfortunately it's nigh on impossible to translate an English acronym into Welsh BEAT would become YBAS which isn't very catchy or memorable.

    There must be very reasons why the charities are separate and I entirely understand that. However in something as fundamental as awareness-raising I don't think it's reasonable to be criticising Governments for a lack of awareness-raising, which all four charities have been doing via the Pathfinder Study, without taking a look at ourselves.

    I have a meeting with Target next month as they're putting on an event in Cardiff later this year and I'm helping out with that. I shall take the same question to Target as I posed to Gilda Witte of Ovarian Action and to Ruth Payne of Ovacome.

    At the end of the day those of us living with Ovarian Cancer just want to reach out to as many women as possible to make sure they know how to look out for the symptoms. We're talking about saving women's lives here.

    I'd appreciate any feedback from members on this discussion.

  • I agree too Annie.

    When I was first diagnosed, I was given info about both Ovacome and Target Ovarian Cancer (TOC). I dipped into both websites, ordered booklets / leaflets and found all the info useful and helpful.

    Then i went to a Target Ovarian Cancer day in Bristol, it was the first time i met and talked to other ladies with OC - really useful. That is also why this Ovacome site is so very helpful - knowing other people are also going through what i am and not feeling I am the only one. Also being entertained and inspired by the lovely ladies here!

    But as time has gone on and I have completed this first line of treatment, I have wondered about fund-raising to help these charities continue to support other women-and that is where it is tricky. Which to support / what are we raising the money for / does it duplicate what others are doing? Anyone at the AGM at Members Day will know I raised the question there too.

    So for the moment I have no answers. I can make a personal donation to Ovacome to show my support for their work but will hold off on any other fundraising for the time being I guess.

    I also happened to receive an email questionaire today from TOC asking for my views on their support and will raise the issue with them too.

    Lynn x

  • Hi Lynne,

    This is very well put love x G x :-/ ;-)

  • Thanks Lynn, I didn't want to quote your name in my response to Babs.

    I have had a bad experience recently of passing on funds donated in memory of the late wife of a contact at Velindre Hospital. He was very specific about how he wanted his money spent. The charity in question have ignored the reason those funds were given and this has upset me greatly as what has been proposed is nothing more than wasteful squandering which I begin to think is just another element of the turf war going on between charities.

  • It would be brilliant if you would raise this with Target Ovarian Cancer too. This site is a perfect place to gather a body of opinion about this.

    I understand there can be clashes of personality over time. Apparently Ovarian Action were part of Target but split away due to a disagreement. This doesn't seem such a big deal as the remits of the two charities are so different - but I would like to think that Ovarian Action could get together with the other two just to agree a common awareness-raising leaflet.

    If enough of us ask perhaps we'll help the charities to resolve their issues with one another.

    xxx

  • Hi Lynn

    I agree with all you've said. I have been asked to take part in the TOC survey too and, in a separate email, have been asked if I would like to continue to support TOC in my region. I missed out on the TOC event in Liverpool last year as I wasn't well, but met the local rep and said I would continue to support them. I did feel a bit pressured into helping to raise awareness, on their behalf, with my local doctors/health care providers etc and although I dont mind doing my bit, I felt a bit overhwhelmed at a time when I really wasn't feeling well enough to give my all. I actually felt guilty!

    I will support any charity which I think is doing all in their power to champion our cause, but they need to 'communicate' with each other and work in unison to make the best use of all the money they raise!!

    Well done Annie for highlighting this issue!

    Colette xxxxxxx

  • hear hear - I agree! Nicola x

  • Hi Annie,

    It does seem odd ??!

    Love x G x :-/ ;-)

  • Awareness raising is one area where the charities could and should work together. I think Ovacome has got this message loud and clear after Saturday. If there is resistance to the idea from the other charities it should be made very clear to them that we, the people with the disease disapprove strongly of an attitude that is more about competition than collaborating to achieve the greatest good!

    Love

    Linda xxx

  • I fully support you on this issue Annie. I hope that the NHS will run an awareness raising campaign sooner rather than later, but in the meantime there should consensus between the charities. I have completed a survey this morning for Target and made the point that I feel that there should be one united charity. There would be strength in numbers if they joined together and I wouldn't be left wondering whose leaflets it is best to hand out to raise awareness and who to donate funds to! Thank you for your work raising this issue with the CEOs.

    Ann xx

  • This is great. Lynn has been completing a TOC questionnaire as well. Hopefully all the charities will be getting the same feedback.

    xxx Annie

  • Dear Ann

    At the end of the day if you're donating funds I'd look carefully at the Charity Commission website to ensure you are placing hard-earned funds where they will be utilised most effectively.

    I've also had a discussion with my MP. I took along the three awareness-raising leaflets from the 3 charities and the first thing he said was that it was such a waste to duplicate resources in this way.

    Isadora points out that the BEAT message is the most appealing to her. It would be important to have a range of materials made available in order to get the message across to many different social groupings. Target's Pathfinder Study actually mentions this. Having just one charity doesn't mean the range and quality of literature would be compromised. It would just mean that literature is better targeted and distributed in a cost-effective manner.

    xxx

  • There was a bit of a flurry on Twitter after I tweeted Target Ovarian, OC Action and Ovacome on the need for them to work together. If you see my tweets you could retweet them to reinforce the message!

  • It is interesting reading all your comments about the questionnaire sent outtoday. I went to a meeting two years ago, but the questions on the sheet seemed to have no relevance to the meeting I went to, so perhaps it was another group. I really can't remember who put in on in London in October, but I remember the day well.

    It is very confusing having all these groups, and the idea to merge them under one heading seems like a great idea. Perhaps I'd better finish the questionnaire and give them my opinion as well.

    Viv

  • Dear Viv

    I'm with you on this. Somehow I've become involved with three of the UK-wide charities. I'm happy to help anyone if it means raising awareness of Ovarian Cancer and hopefully preventing other women being diagnosed before it's too late to hope for a complete cure.

    I'm beginning to get them sorted out in my head. Ovarian Action were part of Target but they broke away and it does seem looking at the Charity Commission website that their mission is somewhat different from the others as it concentrates on medical research. They produce awareness-raising booklets which appear in GP surgeries and the like along with Target's materials and Ovacome's BEAT flyers and cards. They also produce information booklets as do Ovacome.

    The Pathfinder Study by Target Ovarian Cancer states, 'Joint working between organisations will be the only way to deliver the rapid progress we so urgently need to improve outcomes for women.' so at least one of the charities recognises the benefit of working together.

    This is surely a call for action from Target to join forces with the other charities. Unfortunately Ovacome are critical of Target's Research and as I understand it their reason is because there was no peer-review of this publication. I'm not a researcher but it looks from the publication that the research was conducted appropriately as the document states that it was 'carried out in accordance with the requirements of the international quality standard for market research ISO 20252:2006.' At least it is a publication and it's one that is being taken to Westminster, Cardiff, Edinburgh and Belfast in a call for action to improve awareness-raising across the UK and facilities to improve early diagnosis, GP training, develop a reliable screening process, and much more. I saw my MP at the weekend and he was only aware of Target. I know Ovacome had an event in Westminster with English MPs but as far as I know this hasn't been extended to the devolved nations.

    I'm not sure whether this explanation confuses the issue even more than before! lol

    Love to you - hope the RM come back with something helpful.

    xxx Annie

  • I actually welcome the difference between different organisations, and would feel somewhat cheated by the idea that one set of information covers all, because it is not that simple. As a 'client/patient/customer/whatever', I want to chose where I go for my information and treatment, and for my support, etc. Different organisations have a different way of presenting, and different services to offer. Even the symptoms information is not standard - it is pretty subjective and inexact. I have to say that 'Ovacome' has been the only charity that presents in a way that appeals to me, and that (in this forum) provides a service that is useful to me.

    In my professional life I started and ran a charity in a different area of health, and saw a gradual merging of services and approaches dictacted by government through funding of the different agencies. The outcome was the loss of choice, and the undervaluing of those who worked out of their own personal passion and a great deal of experience. Now there are fewer services, only offering a service to patients who will do as they are told by the remaining providers.

    I feel that there is a real danger of that, and for those reasons - and out of simple preference- I say 'vive la difference'.

    If a 'standard symptoms' literature is to be created and distributed, surely that is for the NHS to do in a way that can be used by all agencies in the field.

    I want 'Ovacome' to remain true to itself - and to resist any identity merging or dilution - sorry!

    Isadora.

  • Dear Isadora

    Thanks for posting your opinion. It's good to understand all the perspectives which is the point of posting this up on a public forum.

    I agree with you that the Health Unlocked site which we call the Ovacome site is far and away the greatest support for us all and our lives would be much lonelier without it.

    I agree with you about the format of the Ovacome flyers. They're very attractive and BEAT is easily remembered. Unfortunately it doesn't work in translation into Welsh and you could say that some important symptoms are missed from that flyer. I'm not proposing merging whole charities - just avoiding costly duplication. xxx love Annie

  • I've just received an email from a director at Target so it's good they're reading our blog - but also a bit freaky to think there are all sorts of people we don't know snooping in on our conversations. Another reason to discuss privacy settings with Health Unlocked.

    I can imagine it's impossible to combine charities that have completely different remits. It does seem that Ovarian Action are heavily committed to medical research. Target are very active in the regions which is really good. Both Target and Ovacome appear to be involved in political lobbying. I've attended a meeting in Westminster to support Ovacome's launch of reports on NHS Trusts in England and Target have invited me to attend as an observer of the All Party Political Group on Ovarian Cancer. Target are also being really helpful with trying to get an audience with members of the Welsh Assembly. Target are clearly communicating with a lot of you through feedback forms. Ovacome don't seek any feedback at all.

    Hopefully the charities reading this blog will take pity on us. It's bad enough having a terminal cancer but yet wanting to do your bit to help, then finding yourself like a child of warring divorcing parents being pulled in all ways by the major Ovarian Cancer charities.

    All we propose is collaboration to produce and distribute Awareness-Raising Flyers given the Pathfinder Report encourages parliament and assemblies to step up awareness-raising.

  • But why? They are not parents and we are not children.

    It is similar to saying that two independent booksellers, passionate about their stock in different ways, should put their names on joint literature to advertise the same book.

    Charities are in competition for funding and support, and they are only useful if they have a unique reason for being with staff who are doing the work because of their own experience and passion. Out of that grows individuality and specialism.

    Let's support that individuality and applaud the passion of those who are prepared to work on our behalf in the ways they feel are right.

    Perhaps there's a special need in Wales that might be better served by a new group to answer that need specifically.

    Best wishes,

    Isadora

  • Hi Isadora

    I think this reinforces the point entirely - separate, unique charities are great, duplication is not - it is not value for money in using hard earned/raised cash to duplicate what other charities do. No answer to this unless the charities concerned work together to clarify their unique areas of work and identify any overlapping joint areas.

    There are TOC leaflets in my, and other local, GP practices - so surely not good use of my time to distribute Ovacome leaflets?

    Surely in raising awareness, a joint campaign across the country would have greater impact?

    Lynn x

  • Hi Lynne,

    I agree with you at my GP surgery they have Ovacome posters up to raise awareness (and while this is good) there is no point in me giving them the same awareness poster but from another charity... apart from the fact it is a waste of money to duplicate, it is also a lot of wasted energy on our part (energy that is costly to us ) I started off being enthusiastic about raising awareness... then it sort of fizzled out because of the duplication... but I suppose each charity can only survive by not only raising awareness about OC but raising awareness about their own particular charity....so my guess is this is part of the reason behind it.

    Love x G x

  • My word Isadora

    You touch me on a sensitive point. I can promise you living in Wales I experience daily the massive cost and waste in division and duplication. We certainly don't need a separate charity to cloud the issues any further. There are only 3M people in Wales and just 400 women p.a. diagnosed with Ovarian Cancer. We are far better served by UK-wide charities and we're lucky to have Target Ovarian Cancer which is working extremely hard to serve the regions and help with political engagement within the devolved administrations.

    Let me give you an example of how wasteful it is to compete and duplicate. Some years ago working with school children I heard of the Aim Higher Project in England. It produced the most fantastic resources to encourage children to engage at school and aspire to university. There were DVDs, brochures, activity packs, posters, teachers packs and so much more. I was told by the Welsh Assembly that Wales couldn't afford these resources. I understand that. We're a poor nation.

    I contacted the Aim Higher office in Sheffield asking if I could have some resources and they told me as Cardiff was in Wales we were not eligible. I rang back a few minutes later, told them Cardiff was in England, and I received a huge consignment of materials that we could distribute to help pupils here. Do you know what, they even had their resources translated into Welsh and they were happy to give them to me as they said they had had little call for Welsh medium resources and had a huge surplus that would otherwise be thrown away.

    So, dear Isadora, I probably come from a very different perspective as you and I hope we can agree to disagree. I'm with Lynn and the others asking for these charities to work together just with regard to awareness-raising leaflets because these will save lives. The charities could still maintain the diversity of leaflet as you quite rightly say BEAT may get the message across to some women, Target's may get the message across to others. They just need to work together to make sure the diversity of awareness-raising leaflets gets out into every community, and that women hear about ovarian cancer before it's too late.

    Collaboration means cheaper print runs, better planning as to which audience they are targetting, and cheaper logistics. The savings made on these would enable the charities to get more leaflets get out to more women.

    More information out there, less deaths.

    xx A

  • I am happy to agree to disagree. 'Collaboration' actually becomes decision by committee, and results in the wealthiest getting their way every time. There are also huge questions about the wasting of resources caused by awareness campaigns, especially in a realm, like ov. ca. where the 'symptoms' are misleading and seldom recognised (look at the harms done and lives/money wasted as a result of breast screening - ok,that has picked up some cases, but many, many have also had unnecessary, expensive treatments, and suffered illness and death as a result -and there is no screen for ov. ca.).

    I do not unquestionningly see awareness raising as a benefit - devising a cheap and reliable screening test for a specific cohort would be my holy grail - and changing food production methods to reduce the numbers of humans suffering cancers overall. I don't think there's much evience that awareness campaigns lead to fewer deaths.

    The grit is the thing in the oyster that produces the pearl, and so let's value diversity and friction, and thereby end up with something beautiful! As we do on this forum!!

    Yours in wonderful ambivalence,

    Isadora.

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