Here in the UK we don’t have the issues around a GP agreeing to treat chronic pain or of insurance covering prescription charges in the same way that patients in the USA do. I am not saying that our GPs always get it right when treating those of us with chronic ailments, and I believe that chronic pain can be treated back to front – that is drugs are thrown at it as a first line and then referrals for specialist pain clinics come too late. I was one of eleven on an in patient pain course for assessment for spinal cord stimulator implantation two years ago. We had all lived with chronic pain for years and this was the end of the road…..whilst we appreciated the teaching of coping mechanisms, self help and psychological support, most of us felt that this had come years too late in our treatment “journey”! We were all taking opioids and in order to qualify for a stimulator trial we had to come off or reduce this. A daunting task!
This isn’t necessarily a criticism of our doctors – I know that they have such a limited time to see and get to the bottom of each patient’s problems. Who saw the BBC documentary series following Dr Rangan Chatterjee “Doctor in the House“? He had the luxury to be able to spend time with his patients – over a period of weeks he spent time in the home, became familiar with families and habits, diets, sleeping patterns, which all allowed him to dissect issues such as fibromyalgia, cluster headaches, chronic fatigue syndrome and more. But this is not the real world and in waiting rooms across both sides of the pond, the queue of people needing help for chronic pain grows.
I mentioned prescription costs and in the UK we are fortunate, yes I did say fortunate, to have a fixed price per item and for those of us needing more than one drug per month, the prepayment programme saves money on these charges. But we are experiencing constant cuts and patients are seeing their regular medication being withdrawn – I recently read a letter from a young father who has had his medication for rheumatoid arthritis stopped due to funding cut backs. However in other parts of the world patients must cover the full cost of drugs if insurance will not pay out – I take Lyrica/pregabalin and prior to the initial licence expiring, each month’s supply cost hundreds of pounds. The first time that I was prescribed it was at the private hospital attached to the hospice where I worked – aged 39 I had to ask my dad to pay as I didn’t have enough money with me to cover the private prescription. Dad has never let me forget that he put up the funds to start my drug habit!!! Such a joker….
Without further ado I would like to share with you Shelley’s post in which she discusses the use of opioids – both on prescription and illegally. It is an informative read, particularly for those in the States.
People with Chronic Pain did Not Cause the Opioid Epidemic
A great deal of people are uncomfortable with how often I address the “opioid epidemic” and how it hurts people with chronic pain. I think this is because healthy people like to imagine that doctors can fix everything and if something isn’t fixed that it must be the person’s fault. Therefore if someone is in pain they aren’t really being denied treatment for it, they just aren’t trying hard enough. Unfortunately the reality for people with chronic pain is very different. It doesn’t matter if you’re the perfect patient, doctors will no longer prescribe pain medicine.
Even if you’re lucky enough to find a doctor who will treat your pain, good luck getting your insurance to cover your prescription or your pharmacy to fill it. These days a pharmacy can refuse to fill your prescription and then call your doctor and tell them they were wrong to give you this medicine. Opioid hysteria has gotten so severe that now we’re bypassing the judgement of doctors and listening to pharmacists instead. My opinion of doctors has never been high, but they go through years of medical school for a reason. While pharmacists are educated they are not doctors and are not familiar with individual patients. So why are we granting pharmacist’s more power than doctors? Oh yeah, everyone on pain medication is an addict.
Here’s the problem though, the opioid epidemic does not come from prescribed pain medicine or chronic pain patients. In fact 75% of all opioid misuse starts with people using medication that wasn’t prescribed for them. Also 90% of addiction starts in the teenage years when teens are also misusing alcohol and hard drugs in addition to pain killers. Have we banned alcohol yet? Because 88,000 people die of alcohol related deaths per year and no one seems to care. Instead we ban pain killers even though less than one percent of those who were well-screened for drug problems developed new addictions during pain care. In other words, people with chronic pain are not the problem and were likely never the problem…….”
For the full post please visit Shelley at The Chronic Mom
In the same way, how many of us have surgery out of desperation? I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more! I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person. The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.
Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it. But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.
The current postage on one 30ml bottle to the UK at Priority International rate is $48.75 or £39.36, or first class rate is $22.75 or £18.37. The exchange rate has altered since the Brexit vote in the UK and unfortunately for me makes the product and postage rate higher as the pound falls against the dollar!
A visit to the dentist got me thinking again about what our medication does to us. I am pleased to report that the dentist was very impressed when I opened my mouth – no not to speak , he made sure that didn’t happen – but to see a set of filling free gnashers! Quite a feat at my grand old age as my kids remind me. Forget the dodgy back, bendy limbs, loose joints, malfunctioning bladder and pain, because my teeth are still ok!
In the heady days of my early career as a London staff nurse, when we both worked hard and played hard, I was introduced to red wine. I’d never really liked it before, but our medic friends Steve and Tina introduced us to a certain wine bar in Leicester Square – and Steve introduced Duncan to a single malt whisky club, least said about that the better!! The Cork & Bottle was a basement bistro style wine bar and was the only place in the early ’90s where a particular Aussie red wine was to be found. More than once the four of us drank them dry of our favourite and had to be thrown out when we outstayed our welcome. I have no idea if it is still there, but it holds some great memories.
But at times when it feels like there are few pleasures left, a tipple is called for – except for when it starts to taste DISGUSTING! My favourite red wine tasted foul – bitter and sediment like really cheap, student wine. What on earth was going on?? Did I ever remember to tell my patients that favourite food and drink might become unpalatable? In my head and neck days it went without saying, but I’m not sure that I really understood just how much my mouth, and my eyes for that matter, would change due to drugs. A drier, sore mouth with taste buds that could no longer taste – sweet food became a no, no and savoury food never had enough flavour.
The plot was as daft as ever, the men as dippy as the women were sensible, and the Home Guard, with just a little help from their strong ladies, saved the day against “MR HITLER”. We were some of the youngest in the cinema, and even in a carers and cared for group were the last to make it out. Duncan very nearly tumbled down the stairs with me today as my leg/foot were numb and my balance indicated that I’d been on the booze when I stood at the end!! Very good first impression I created. I’ve said it before but the stim doesn’t stop my leg going dead…..does anyone out there have any helpful tips??
ungest is into her second week of half term – 2 weeks! I remember only getting 2 days for one of our half term breaks – the middle started his half term with a trip to Comic Con London – grown people running around dressed as comic book characters! – and I believe that our student is on a project week before reading week next week. Reading week indeed – the university term only started at the beginning of the month.
paddle making contact with my stimulator,
PainPalsBlog 