I'M GOING TO WRITE A BOOK, VOLUNTEERS PLEASE?

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Hi everyone

I'm serious when I say this!!!

I've been a member on here since January and found everyone's experiences very moving and so VERY VERY DIFFERENT when it comes to medical treatment.

A lot of us seem to have very very similar symptoms, if not exactly the same, but why when we live in different parts of the UK is the treatment so different - from when we have an MRI scan, to what medication we are prescribed, to how long we have physio (if at all), and whether we are offered an operation and how long we have to wait.

I've now got another best friend and my Mum both suffering with pain down their buttock and leg but even their treatment is different from each other, and different from my treatment, and they both live very locally :shock:.

I would really appreciate your help with this please :D :D. What I would like to do is write a book, like a diary of people's experiences and armed with this information, I'm going to contact every single Orthopaedic and Neurological surgeon in the country to tell them our different stories and ask them why there is no consistency in treatment.

If you're interested in taking part, please email me or pm me and we can start talking about your story. Of course, your story will remain anonymous if you wish it to be that way, however I would like to quote which part of the UK you live in or the NHS trust you are under. Although these stories will include those who decided to go Private for their treatment for whatever reason.

Thank you sooooo much, looking forward to hearing from you all. I'm not sure what this will achieve but I find myself getting ever more frustrated with our differing treatments :x

Love and gentle hugs to everyone

Jude xxx

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  • Posted

    Please please I'm still looking for volunteers. I have 3 at the moment but I need more to make an impact on the NHS. Please please PM me if you're interested. I've got a publishing company interested and I'm honestly doing this with the best intentions because I get so frustrated with how the NHS seem to treat the same condition, I really want to give them a kick up the jacksy!!!!! I feel so passionate about this subject because I have suffered like you.

    I would really appreciate you contacting me by PM.

    Love

    Jude xxx

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  • Posted

    hi there

    you can count me in.i was told i had cs on c3-c6 had to live with it normally only old people get it nothing they could do then after ANOTHER 7 months of PAIN,LOSS OF FEELING IN ARM ECT, ECT ECT you know the symptoms not to mention losing my job i was told why haven't we operated on you for this prolapse disc in c6/c7 with nerves pressing on the spinal cord ect ect ect

    any way to cut a long story short they what to operate on the 11 aug only 6 weeks after he said why havn't we operated yet

    the only think that has kept me going is looking at this form and getting advice from all you fellow sufferers . i could just scream and believe me i have

    sorry if i'm going on a little as i was begining to think it was all in my head

    as nothing seems to help with the pain

    hope the book is a success as i'm sure lots of people will buy it

    take care from

    a very frustrated and scared ams smile

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  • Posted

    Hi Jude

    I am really pleased that you are thinking about doing this. It is easy for all of us to moan about the NHS and the treatment that we have received but then we rarely do anything to instigate change. I think that it is partly because we are taking part in a game but nobody tells us the rules. In fact the rules are very definately a well kept secret! And partly because when you are ill and in pain you are very definately at a disadvantage.

    I have been thinking about helping out, but I am not sure it is a good idea. As you know I have now started legal action against the NHS, and whilst we are still at the pre-action protocol stage I wouldn't want to do anything to jepodise that and I'm not sure at which point it all becomes subjudice anyway.

    Thinking back over my journey of mistakes, errors, delays, cancelled op, botched op, incorrect diagnosis, further surgery to repair the internal damage they caused, ongoing problems, experience of the complaints procedure (utterly useless by the way), the lies, the cover ups, the mammoth task of changing hospitals and now legal action.....this has been quite a trip. And I think that the world should know about it but as I say with the legal action I don't think I can help.

    I do wish you every success with it though!!!

    Best wishes

    TFU

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  • Posted

    Hi Jude,

    One way forward is to get some statistics. These would give an idea of the scale of the problem and if supported by personal stories would be of interest to journalists.

    BTW: Back pain and leg pain are 2 of our top 10 most read articles.

    If good enough, we'd run a news story here.

    We can help you run a survey here on PUK if interested.

    Best wishes,

    Gordon

    PUK News Editor

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  • Posted

    TFU - I completely understand your situation and I'm just so sorry you have suffered for so long sad sad - heard from Jess recently? You know, if you wish, you could write your story in such a way that it could be completely anonymous, I would certainly respect your anonymity? Of course, this book could take quite a while to write anyway and things for you would have hopefully progressed in a positive direction, gosh I really pray that things will get better for you.

    Gordon, I would DEFINITELY be interested in running a survey on PUK and really appreciate your suggestion and offer of help with it. Please tell me what I should do?

    Love n hugs

    Jude xxx

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  • Posted

    Jude and all,

    Ok – this is a bit of an experiment for us, I hope we can use for other groups.

    Bear with us as we feel our way on this one.

    Take a look at http://experience.patient.co.uk/survey.php which is a general survey we created for PUK last summer.

    What we need to do is design a new anonymous survey (of same type) in order to identify the scale of the problem members of your group have been experiencing. In the survey, we can ask people if they are prepared to comment publicly and also point them to this forum.

    So, could you think of concise questions you would like to ask people coming to PUK to find out if they had suffered similar problems to members of this group and how satisfied they had been with the advice/ treatment received?

    The question options need to be balanced, neutral (no leading the witness, M’lord) and inclusive (so each question can be answered by everyone taking the survey). The shorter the more likely people are to complete it. Multiple choice questions can marked automatically and give better stats.

    We’ll help with the final wording and testing – if you can come up with questions that define the nub of the problem.

    Once we have a survey you are happy with, we’ll run it until we get enough responders to give us a good statistical result. We’ll put the results on PUK and between us, generate a press release that incorporates a few of your patient experiences. The idea of you writing a book should be (but you never know) of interest to journalists.

    Sound ok?

    Gordon

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  • Posted

    Sounds like a great idea Gordon and I'm happy to help with the questions :D :D.

    Is it possible to use this statistical evidence when it's completed in my book? Quoting PUK of course cos the more people that find this forum as far as I'm concerned, the better!!!!!! I could use it as part of the introduction so that people can hopefully realise the scale of the problem and that they're not alone? I was told by my GP only last week that prolapsed discs are rare but based on stories on here I'm not so sure :?

    Thanks Gordon for getting the ball rolling, off to have a look at the link now.

    Love

    Jude xxx

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  • Posted

    Gordon, just a thought, do you want to start a separate post where people can log their questions for the survey?

    Jude x

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  • Posted

    Jude - I think if you just start a 'New Experience' in this forum with a title along the lines of - 'questions to be asked in a survey about prolapsed disc', then ask people to submit topics to be covered in questions or draft questions...

    Over the last three years, back pain has been the 6th most common problem people have been seeking help with on PUK. Leg cramps has been the 8th. So, I think there is an unmet need and the subject is not currently covered by NHS targets. We can go as far as helping gather stats and making an academic comment on them.

    Yes - no problem about you quoting the stats in your book with attribution etc... If you look around the related articles on this site, you'll find other stats and on-line sources for background info.

    Over to you...

    G

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  • Posted

    Hi Jude,

    You can count me in too, just let me know what I have to do!

    Angela xx

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  • Posted

    Hi Angela

    That's brilliant thank you very much. Somehow I need to get my email address to you but I'm not sure how cos I can't seem to PM you. Have you any ideas?

    Love

    Jude xxx

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  • Posted

    Thank you Moo, that's very much appreciated :D. I'll PM you xxx You might want to look at the other link about the survey we're developing for PUK members about prolapsed discs :D :D xxx
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