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E petition for pain debate in parliament

BoveyBovey Posts: 25
edited 12. May 2014, 05:46 in Living with Arthritis archive
I have just found an e petition for pain on the governments website. It has until the end of the year to collect enough signatures to trigger a debate in parliament on how we treat patients with pain. If someone could do a link, sorry but computing isn't my forte! I entered e- petition pain and found it. I believe it is something common to patients with arthritis and therefore may be of interest. It is a subject that rarely gets enough attention and chronic pain can be poorly treated because as yet the mechanisms of pain aren't yet fully understood. We need more research in this area and more professional education about what we do know of the mechanisms of pain. I suffer chronic severe pain and so I am very supportive of this petition.

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Is this the link you require Bovey?

    http://epetitions.direct.gov.uk/petitions/58377

    I went to sign it but was told that I already had done so!. 8)

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    Bovey wrote:
    We need more research in this area and more professional education about what we do know of the mechanisms of pain.

    I quite agree with you here, Bovey, but that's not what this petition is about.

    I can see why the idea of constantly monitoring pain might seem attractive at first sight but I would really hate to be asked how my pain levels were all the time.

    I see the need when post op, when I'm being treated by lots of different people over a single day but, even then, unless I've needed extra pain relief, I want to cry “Yes, it hurts. I've just been carved up. Now please stop making me think about it :lol:

    In normal life, my rheumatologist always asks how I am, my GP(s) what they can do for me. My phlebotamist and asthma nurse do their jobs while we chat about things more interesting than pain and I think my orthopaedic surgeon would be surprised if I bleated on about shoulder pain while he was checking my replaced leg joints.

    I think there's maybe a good case for constantly asking the very old and the very young but, for those of us in the middle, surely we can decide for ourselves whether or not our current levels of pain require a discussion as to altering the meds upwards or downwards? (I hate the 1-10 scale. What am I measuring my pain against? Last check? Yesterday's? My pain of a year ago? Of 53 years ago before arthritis?)

    I feel there's a big danger here of actually taking control away from the patient. There's nothing in the current set-up to prevent us talking about our pain if we want / need to. Why focus relentlessly on it?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • DebbieTDebbieT Posts: 1,033
    edited 30. Nov -1, 00:00
    Thank you both - signed.
    Xx xX
    Healing Hugs
    Debbie.x
  • DebbieTDebbieT Posts: 1,033
    edited 30. Nov -1, 00:00
    I thought I'd say why I've signed.

    My own opinion on this is that it's similar to participating in research. I'm currently doing that anyway so everytime I see a nurse, Dr or Specialist for years to come it will all be going to a research team so for me answering a question each time about pain doesn't bother me & I'm generally asked anyway.
    I do, however, completely understand that we all view things in differing ways ... Rightly so too or we'd be a boring bunch :wink:

    My biggest reason for choosing to sign is that I think anything related to chronic pain needs support as its a total minefield for so many!! Actually getting pain relief for chronic pain sufferers is a huge problem, it's not so bad if, like us, you have arthritis, but if you have something less understood then it can become a complete nightmare!! :(

    My hubby, for instance, has nerve end damage that was caused by Neurologists using contra-indicated medications on him. They're well aware that it's the cause. It can't be treated anymore as he's used all t77he meds he can at the highest doses & they don't offer any relief anymore as he was only 34 wen this happened.

    They meds that do still help they'll give to me daily, during a flare, and he's been given them in hospital multiple times.
    He'd really like to use it for a max of once a week but he'd be happy for one day a month just to be pain free for 8 hours! They flatly refuse everytime tho & the reason behind it is always 'It's too addictive'.
    Well guess wot, chronic pain is life long so that means we're all gona be bedfellows for life with pain meds so it's a case of being realistic about these things & less prissy!!
    He is currently living, well surviving, with nothing!! No pain relief wot so ever. The only description he can give, to try & explain his pain, is that it feels like fire is eating its way up his legs & the other parts of his body that are affected. It breaks my heart :cry: Ggrrrr it makes my blood boil too. Sorry :oops:

    Xx xX
    Healing Hugs
    Debbie.x
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    I think there is a lot of research into pain but I also agree with Sticky. I get asked about pain all the time and it is tedious. I tend to let them know when things are really bad but, in the meantime, there is a level of pain which I accept as normal.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Those who need to know ask me and I tell them. If I need someone to know then I will initiate the conversation. For the life of me I cannot see what benefit this will bring apart from creating more tedious and un-necessary admin. for our already beleaguered doctors. How can one measure pain anyway? Some fall to pieces at the merest whiff of discomfort, others soldier on regardless. Pain (and its perception) is as individual as us.

    Living with constant pain is not easy nor pleasant but, as it's my reality, I have to make the best of what I have when I can. Of course I wish my life were different (and that I had never had to find this forum) but it isn't and I did. AC has helped me far more than any doctor and developing my personal coping strategies thanks to the wisdom found within these boards has also been of benefit. For the life of me I cannot see that few gassy windbags in Parliament will be able to effect anything reasonably like an improvement in my life; that is my responsibility. I use my pain levels as feedback, when they start reaching the untenable then I know to ease up. It's not all bad. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • BoveyBovey Posts: 25
    edited 30. Nov -1, 00:00
    Thanks for all the replies. It's my belief the more pain is talked about the more chance we have of research money. I could be wrong but debating the point highlights the problem. Pain is personal, private and we don't like talking about it. Focusing on it makes it worse. I have suffered pain for 45 years, high doses of morphine and fentanyl for 20 years with all the awful side effects. Me and many others suffer. There has to be a better way doesn't there?
  • stickywicketstickywicket Posts: 25,968 ✭✭
    edited 30. Nov -1, 00:00
    'Better ways' tend to be as personal as the pain. It might be interesting to start a thread asking everyone which methods they use personally. As we've seen on here recently, there are already lots of different methods of dealing with pain – exercises, acupuncture, Pilates, relaxation tapes, distraction and many more. As you so rightly say 'focusing on it makes it worse' which is why I don't want to be compelled to focus on it every time I see a health professional. I use as few pain relieving meds as possible precisely because I'd rather cope with pain than with the side-effects of strong paindullers. I agree that pain is a problem for a great many people. I just don't think that this is the answer.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • lavenderladylavenderlady Posts: 409
    edited 30. Nov -1, 00:00
    signed :) I don't think people really take how much Pain can affect every part of your life :?
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    I've signed it!! No other person can know how much pain your in and how bad it is effecting you except yourself!
  • FionaPFionaP Posts: 39
    edited 30. Nov -1, 00:00
    Signed

    x
    Fi
    x
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