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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

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