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Airing Pain 64: Patients, Pills and Policies

Making pain patients’ voices heard across Europe and changing the prescribing culture

This edition has been funded by Grünenthal.

Almost 100 million EU citizens have chronic pain, but there is still much progress to be made in improving diagnosis and treatment. Pain Concern’s Rowena Jacobs attended the fifth Societal Impact of Pain symposium to find out how patient groups, healthcare professionals and policy makers are coming together to push pain up the agenda.

We hear about a successful initiative to change the culture around opioid prescriptions in Italy and the problems facing patients across the continent due to an excessive fear of drug dependence, while Northern Irish representatives explain how the Painful Truth campaign has brought the patient experience of pain home to healthcare professionals and policy makers, leading to greater recognition of pain.

Pain specialists at the forefront of the campaign for better care explain why education and awareness raising is still such an important issue and Lars Møller, representing a Danish patient group, recalls his struggle to be get treatment for pain in the face of ignorant healthcare professionals. Finally, people in pain are urged to get involved in the fight for better pain management services by putting pressure on politicians.

Issues covered in this programme include: Medication, drugs, prescription, misdiagnosis, policy, misconceptions, educating healthcare professionals, opioids, raising awareness, funding of pain services, GP, patient voice, legality, controlled substances, dosage, chronic primary pain, pain as a condition in its own right, research and stigma.


Contributors:

  • Lars Møller, Vice President, Danish Association of Chronic Pain Patients
  • Professor Hans Kress, Head of Department of Special Anaesthesia and Pain Therapy, Medical University of Vienna
  • Dr Giustino Varassi, Pain Specialist, Italy
  • Dr Willem Scholten, International Doctors for Healthier Drug Policies (IDHDP)
  • Neil Betteridge, Vice Chair of the Chronic Pain Policy Coalition in the UK
  • Louise Skelly, Head of Operations, Patient and Client Council, Northern Ireland
  • Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
  • Dr Chris Wells, President, European Pain Federation.

Comments

Hannah Coffey

Hi, I am so glad to hear people speaking up for those of us too ill and in too much pain to fight or speak up for ourselves on a larger platform…I have been through hell (and still going through it..) I have been in pain for years now but because I have never been given a diagnosis or reason for it, (no dramatic analysis that gets you help, like Cancer!) in fact I am never taken seriously despite going into great detail and explanation of my pain symptoms.
I get absolutely no empathy or support from Drs, only constantly dismissed to continue fighting this on my own continuing to suffer in my private hell and agony. I am in pain, vertigo and nausea to the point I can hardly leave my bed and only for small periods for which I suffer more for later. because ‘I cannot PROVE’ the pain I feel and the agony I am in with any test they’ve so far taken (just blood tests of course), I get dismissed by every Dr I see without being given any way to cope. it’s agonising to get myself to an appointment, it causes me so much MORE pain to get there and then I might as well be shouting on deaf ears. Doctors will sit and listen (or stare at their computer screen) as you describe your pain symptoms and how greatly it has shut down your physical life, and still not at any time offer pain relief other than the over-the-counter pain relievers or something else that is USELESS for getting to a place of any true relief or comfort. I have had antidepressants offered too which just makes you feel really discouraged because they are not even listening or willing to address the physical pain you are dealing with, never mind offer any pain relief.

‘This ongoing prohibition on painkillers has really hurt those of us that are ‘stuck’ in bodies that cause us pain to live in…it’s not like we can trade them in like cars, or I so would! The only way out of this pain is opiate painkillers, they are the only ones strong enough to enable and sustain some degree of physical life through severe ongoing chronic pain…you can’t know what this hell is like unless you have been through it…there is nothing like it, the helplessness, the isolation that physical suffering brings…no one can see the pain you are feeling yet it is controlling your life..it is so hard to wake up everyday sick and in pain, and go to bed that way every evening, you just want/Need a break from it! who cares about a potential for addiction to a painkiller if that painkiller would give comfort, relief and mobility to a person that would otherwise only suffer! It makes me mad that because some have lied to Drs to get drugs for recreational purposes and now that has created an environment of no support and hopelessness for those of us truly suffering.

Thanks for listening and sharing your thoughts, Hannah. You might be interested in some of our other programmes on opioids:
https://painconcern.org.uk.org.uk/airing-pain-programme-54-opioids-memories-and-prison-healthcare-2/
https://painconcern.org.uk.org.uk/airing-pain-programme-21-opioids-and-managing-pain-in-remote-areas/

There’s a real need for clear information about opioids. Lots of controversy and confusion with the needs of people in pain too often getting overlooked. We’re working on it…

All the best,

Tom

Comments are closed.

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