Monday, 28 April 2014

The Opiate Naughty Step

Today, the 28th April, 2014, with little fanfare and not even one triumphal march through the streets of Worthing, I was quietly removed from the opiate naughty step.

After 31 years, 8 GPs and a host of farcical tales so infinite, I could never recount them, I now have a repeat prescription for the tiny amount of opiates that don't even nearly get me through a week.

A nice lady phoned me from the surgery a few weeks ago and explained that my "usage was stable" (?!!?) my needs regular and unchanging (oh if only!!) and (this is a subscript, she didn't actually say these words but if you imagine they weren't implied you've never been on the naughty step) "I haven't murdered anyone at knifepoint for an extra dose or three"

This meant, that just like everyone else, my prescriptions could now be issue automatically and repeatedly without the usual accompanying junkie-hop.

From now on, they would be sitting there waiting for me, accessible and benevolently provided. This is almost too much newness for me to deal with in one big step.

For the last 30 years, I have had to

A) Writhe miserably for a minimum of 72 hours.
B) Call for an appointment that morning or put a request through to speak to the duty doctor. ("The duty doctor is often very busy you know, he's there for emergencies, blah blah")
C) Then, I'd have to explain all over again, every time, to even the most well meaning that, yes, I do still have very severe crohn's, no there haven't been any miracle cures, and no, the missing two-thirds of my bowel haven't grown back.
D) Collect 4 x weekly prescriptions to take to the pharmacy that could be kept there for each Monday morning.
E) Collect said prescriptions weekly, first thing on a Monday morning in-between trying to get two sleepy and often uncooperative pre-teen boys ready for and delivered to school.

For most of those 3 decades, this has been the bane of my life. Way worse than the actual symptoms themselves.

What if your own doctor is away?
What if you get the slightly senile senior partner they can't quite bring themselves to sack?
What if they get the dose wrong or the name or my address? (Which I estimate they did at least 90% of the time, meaning three or four trips where one would clearly never do.)
What if something pops or twists or turns inconveniently septic slap bang in the middle of a bank holiday weekend and you have to explain to those most dreaded of wraiths, the On. Call. Locum?????
What if the pharmacy forgot to order more in or for some reason, Atilla the Hun has been bought in as cover pharmacist and just doesn't like the look of you?

The what-ifs make this the roller-coaster of long term pain conditions something only a fully fledged sickie could ever really know.

With trepidation, Dave set off for the surgery this morning and miracle of miracles, the prescriptions were indeed sitting there waiting to be collected. He took it to the pharmacy and yet more miracley miracleness meant that they had re-ordered the stocks. It was diagnosed right and the dose was even right.

I think I ought to have got some kind of certificate I can pull out at all of those times above when delirious agony has been preferable to running the dreadful pain gauntlet assault course.

"This is to Certify That

Sue Marsh

Has successfully completed 3 decades of judgmental & obstructive pain management.
We award the medal of repeat prescription with no pre-appointment and hereby recommend that all health related establishments at least give her the benefit of the doubt

Gold Level. 


  1. That's great:-)
    I hope it stays like that now - prescription hassle, nothing worse!
    Mind, you have to pay - thank heavens I live this side of Offa's dyke!

  2. Oh boy Sue - this says it how it was for #Dani - the arguments we had - the hospital worse of all - were nurse would tell her she was too young to be in so much pain! She had to go collect or get pharmacy to collect her pain scripts every Monday - thank fully she had a good relationship with the pharmacy who also delivered them to her and indeed the last couple of years it was sorted as long as she did not end up as an inpatient.

    Hard to believe that it is so difficult to get timely and consistent pain relief when chronically in pain.

  3. This seems to be such a problem for so many. I think some doctors are really paranoid of misuse & the rest don't understand what pain is like because they don't have to deal with it. I too have had similar problems it ironically didn't work out untill the pain team dumped me back to my gp which makes sense? >. <

    1. Well so much of the time pain teams have been trained up in the belief that depression worsens pain = depression causes all pain = if you're in pain you're depressed, so painkillers aren't the answer.

  4. Wow, this is making me thank my lucky stars. I thought my doctors were being a bit reluctant, but actually both hossie and GP have been amazing by comparison. I feel like moving to our little slice of damp East Midlands paradise a couple of years ago was a very lucky decision.

  5. It might be worth mentioning (to someone who can't use her stomach properly, I know, I know) I'm experimenting with turmeric and coconut water paste as a painkiller. I'm mixing in some black pepper too as apparently that makes the turmeric more bio-accessible. Does it work? I'm not sure, might be. Too soon to say really as my pain level fluctuates anyway and as well I'm being given mighty painkillers which I'm told not to take as they're bad for my heart but I take anyway. Sometimes. Other times I think I've taken them and forget, or maybe I take more than I should. Ho hum. I need to do this more to be able to determine whether the turmeric paste is making a difference or not. I'm getting into this whole alternative thing as I have a guy doing radionics for me and I get energy from seemingly nowhere, a boon for someone with thryoid problems like sluggishness. This makes me wonder, apart from economics which we now recognise, what else is there we've been lied to about? Keep drinking the milk Sue xx

    1. Bill, Turmeric has been found to be as high in anti-inflammatories as steroids in clinical trials. So a very good idea. Other properties you might think of if you can tolerate them are garlic (great antiviral, good for the heart too) capsicum - chillies also have excellent anti-inflammatory properties. Also Manuka honey very expensive but something that I find genuinely works.

      Basically I use thai broth with turmeric as medicine whenever I can't manage solid food and make my own chicken broth as a base. Tastes stunning and works every time. For me obi, everyone's different. Lots of people say they can't tolerate chili or garlic but find its actually other things in curries etc that cause the problems. On their own in a broth like this, that shouldn't be the case.

  6. Congratulations! You must be so relieved what a waste of time and energy!Drs so much more interested in themselves than addressing your pain.My mother took Valium for years,for insomnia she could never manage more than 2 hours sleep then she would wake up,in her 80's the GP decided Valium was was a national thing I know,and she was told she had to come off it.she was dead 2 years later.She and I thought the whole thing was ridiculous,they put her on another tranquiliser,no doubt in a few years time they will decide that is addictive too.GP's reputation way more important than an old lady's suffering.pathetic.I hope it continues to go well for you Sue.

  7. We had the same problem here until the GP came out and saw the amount of pain I was in - the tune was changed as he said he could more or less feel the pain coming from me!?!
    Now we just have to worry about the junior doctor who saw my hubby at the hospital today for his pre-assessment - she thinks he takes far too many opiates and wants to him to see the pain team at least once before he goes for his operation - erm, I don't think that's going to happen!!!

  8. That's awful Sue. Your story makes me glad that I have great GPs and Hospital medics too.
    They decided I needed morphine and it was me who resisted. After I reluctantly accepted it, my GP said that all I need do was ask as and when I needed or wanted any more. No rations or anything.
    It seems sometimes that the term 'postcode lottery' applies in more ways than we imagine.
    I am very happy they've decided to treat you as a responsible human being! Better late than never I suppose... I always think of the outcry if people allow animals to suffer in pain.
    All the best

  9. Well done Sue, for relating a tough tale of unfair hardship and suffering in a way that doesn't stink of irony and bitterness. There's only one thing that could have made me feel better reading your good news, that is if you said you are to be awarded an M.B.E or being made a Dame. It surely won't be long before this country awards you something for your fabulous unreserved caring and unselfish efforts to help all disabled people and others who need a bit of extra help in life.

  10. You appear to have a spam poster above!

  11. My GP won't let me any where near the Pain Team!

  12. There are so many people out there getting treated like this (me included for decades). My epilepsy and other very serious conditions were exacerbated by a very dangerous person at my previous surgery and a hospital consultant in summer 2012 who even told me I didn't have epilepsy and other numerous conditions! It was like 'piggy in the middle' with having 4 hospital consultants and my dietitian etc. giving me a right telling off all the time even though I kept telling them the GP surgery were refusing to follow the instructions in their letters to the point I had to get every medical professional to send me copies of their letters. I copied them and got someone to hand deliver them, including six wheelchair referrals (which all mysteriously went missing) but the surgery still wouldn't get my meds right. One person there even commented on the dosages of certain meds and talked about children being able to buy prescription meds in the local park! Thankfully I got myself 'struck off' and, fingers crossed, been with my current surgery for a year and they're being so incredibly nice to the point where I'm now on much better pain relief for physical pain, sleepers if I need them, more suitable relaxants for the seizures and it's starting to calm things bit by bit... I just hope it continues that way *hugs* It's people like you Sue who give others the courage to stand our ground and be able to have the courage to ask for suitable levels of pain relief, indeed, any medication that our consultants prescribe. I know quite a few people who openly boast that they're on 'this n' that' and can get anything they want from their GPs who give the rest of us a bad name. The last thing we need when we're seriously ill/disabled is to be treated as or made to feel that we're junkies :(

  13. As somebody else who has to take opiate based pain meds. I couldn't be happier for you. I too recently got my repeat and it was the best thing to happen to me in months.

    No more having to do the "Not a junky honest" dance at every doctors appointment. No more looks of derison and suspicion. I remember to this day I had a nurse at an A&E flat out accuse me of dislocating my shoulders (I'm epileptic and force them out of joint when I seize) for morphine.

    Hooray for the few bastions of sanity within the NHS