Yesterday it was heartening to observe the media attention to Ovarian Cancer. It's good that our various governments and assemblies are taking note of this and comforting to know that charities such as Ovacome and Ovarian Action are lobbying on our behalf.
By coincidence I had an appointment with my oncologist yesterday and we talked about the media interest in Ovarian Cancer. She urged me to encourage support groups to become active lobby groups, or at least encourage members who are interested, to become politically active. She told me the patient voice is an important force for change in the NHS. Una Polegrass in Northern Ireland said it all, 'I am only one person'.
I sensed some resignation and regret in the unspoken words of my oncologist - or am I imagining this - that she felt the medical profession hold little sway by comparison to us.
So I'm just passing on her words. If you belong to a Support Group please raise the issue of Patient Representation as a political lobby and a force for change.
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Whippit
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The patient and their families have much more clout than Healthcare professionals. Even on wards staff can point things out that need to be addressed and they are totally ignored.
When patients or families complained it was looked into immediately. Your oncologist is right in her advice. Even consultants who used to be the 'gods' of the NHS are hardly ever taken notice of these days
Annie are we in danger of chaining ourselves to the WAG railings lol xx
I was told something similar at our Essex Cancer Network survivorship meeting. The ECN is being disbanded they think, replaced with the Eastern Counties group, covering cancer, dementia, stroke, cardio, gastro, urinary, paediatrics etc etc. you couldn't make it up! However, they said that only patient groups have the clout to speak out. It will sound as if they are only self-interested for their jobs, I suppose,if they speak out. Try MPs!
All the best with your lobbying!
Love Wendy xx
Oh god feeling bad for not having jumped on this myself, just buried in work and already stressed out. Planning to try to do some awareness stuff around Gill's group tho if poss.
If useful the pro view on this dynamic is:
1 anything that involves people and real stories is always more compelling for media - that's where the groups win out. People also work for audiovisual media like TV/radio for obvious reasons.
2. Statistics and studies always come in a strong second hence TOC success (especially if done regularly - annual studies always work because change or lack of change can each be a story in their own right).
3. last on the list is just opinions. They aren't newsworthy unless big enough group with controversial enough collective view that all are willing to stand behind individually as well as collectively... you rarely get consensus enough. Too much personal perception of exposure and risk. Sometimes professional associations can buffer this so BMA view would have weight but an individual GP or small group... not so much. That's also why no MP is willing to be pushy or strong enough to stand out far from the crowd...
Thanks for this interesting insight. What is very powerful about our lobby is that we have this website, contacts across the UK and an extraordinary collection of skills and experience to draw on.
Ovacome have just published reports on every NHS Trust in England and are planning to cover the regions after this. Whilst some of us are pleased with their treatment the case is still there that the UK lags behind the rest of the EU in detecting and treating Ovarian Cancer. There were horror stories from England, Wales and Ireland in the news. Our contact in Wales spent 6 years going to her GP with Ovarian Cancer symptoms before a locum realised what the problem was.
I for one feel rather ill-informed on all the issues and rather fear to lobby my MP until I have the facts at my finger tips. It would be great to use some of our skills to research and put together a universal patients' paper for us to take to our governments. I'm sure we have an experienced researcher in our group - and perhaps this is something positive we can be doing. I'm not research trained but I'm happy to be part of a movement to make a patients' lobby.
Any researchers out there inspired by this and willing to help? xxxxx Annie
I agree with you so much Annie. I feel very ill informed about a lot of things where cancer is concerned. It was only yesterday that me and my collegues were sat in my office discussing various things about cancer and to our dismay there is so much that we dont understand.
I like you do not have research experience but i too would like to help if i can.
I am really keen to warn people about the symptoms of ovarian cancer and am being a bore and telling everyone I meet about what I am going through and what they should be looking out for. It is so very hard to do this without scare- mongering, but at the same time being factual and informative.
I was visiting the GP for two years with symptoms before I ended up making my own private appointment with a consultant as they were still reluctant to refer me.
Needless to say I am pretty angry with them!
Amazingly, health care professionals, GP's and nurses alike, seem to be blissfully unaware of ovarian cancer symptoms. One nurse I spoke to thought that bleeding between periods was the only symptom and the fact that I had obviously been through the menopause simply didn't occur to her.
God that is TERRIBLE. I wonder if any way to sound out more nurses on this? GPs even better ... If even 20-30 of us got our GP to state the top 3 or 4 symptoms it might reveal a big disparity. Anonymous, natch - but if we could say we polled GPS in 20 different Nhs trust and they all said totally different things... There are 150 primary care trusts in uk, roughly. We would need all to ask exactly the same questions and make it v fast so as not to leech into GP time
I will also help. i do online research for a living, in effect. I can also contribute, once we have data a professional editor who works for me. I will underwrite a few hours of her time to make the resulting item tight.
We need the info first. Be warned though: any paper like this , set of messages etc really needs clear SOURCES of all the bits and pieces (who said/ wrote / identified / researched it, date, web address if you find it online!) so we can check all is kosher info. If anecdotal, we can use info but should say so. So do everyone make a note as you are looking around - it is awful not to find it afterwards!
I know ovacome already do some polling but we could do some of our own too, from our perspective. Get those fresh figures...if we can get input from enough people. Even a survey of x hundred people has good power. If we can't get to those numbers then we can still gather good info to turn into messages.
S
Xxx
I had had low grade cancer for a number of years before I was diagnosed but by then, I was stage 4. Originally, it was thought I was 3c, but then it was realised that cells had already travelled to my lungs and they were on ex-rays dating at least 3 years back. When I had 'suspicious tissue' from my bowel and had a bowel resection, I wasn't watched at all. I've since learnt this is common. Then, when I had my gall bladder removed, the ascites I had at the time wasn't tested for malignancy. If I'd have known about ascites before, I may have asked about this when I had surgery. It all seems like wasted opportunities and sad beyond words to me, but the saddest thing is that this must be happening to other people too.
This is such a tragic story of missed opportunities. The medical profession is so compartmentalised these days that specialists only look at their specific area. My gynaecologist couldn't understand why various medical professionals hadn't noticed my condition, for instance when I was x-rayed when I had appendicitis a couple of years ago, and at an earlier date health professionals hadn't offered to remove a damaged fallopian tube after an ectopic pregnancy. Both of these would have prevented and/or identified ovarian cancer and it might well have been diagnosed before it had developed into an advanced and incurable stage.
I don't tend to think about it because it would make me regret what's happened .... but there is a lesson to be learned for the NHS - to be more vigilant and multi-disciplined. This is an interesting new take on the need to lobby for improved diagnosis and treatment.
How are you feeling now? I haven't seen you post for a while Tina?
I'm ok Annie. Thanks for asking. The tiredness is getting to me of late ... more so than usual and my tummy is very tender. I hope it's not the first sign of the return of the Jedi. I hope your signs of reoccurence are staying where they should be ... well and truly with the junk mail. xx
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