I have previously written of my challenges around pain control; this weekend brought a new chapter to the issue. Since being transferred on to the first non morphine based strong painkiller Palexia five months ago the pain has not been controlled. As the side effects were, I was assured, likely to be less of an issue as my previous opiod regime I have gritted my teeth (literally on occasions). The addition drug available for ‘break through’ pain has been Fentanyl – what I refer to as my ‘lollies’ (the plastic stick protruding from my sophisticated chops in the banner photo). Now Fentanyl is a dangerous potentially lethal narcotic to the average member of the human race but frankly not in the least bit nasty of a hardened chronic pain bearer like myself. The drugs has featured in two crime dramas in the last 12 months on both the BBC and ITV – when I inadvertently left some in a hotel bedroom (I think) the doctor asked if I had informed the police; I hadn’t and didn’t as I couldn’t entirely remember where I might have left the relatively small quantity.
After running out of Fentanyl rather sooner than usual on account of having been ‘in a shed load of discomfort’. The delightful promising alternative has been an abject failure when tackling my ‘complex’ pain issues. So on Saturday I am entering Fentanyl free day four and yes I am not in ‘a good place’. Apropos of something unrelated I come across an article in which Fentanyl is discussed as having similar effects to heroin; oh I think perhaps some of how I’m feeling is withdrawal great if only someone had pointed out that going cold turkey was not a tremendously good plan! This must be in part associated with the night sweats (although the early onset menopause is still a possibility), the terribly aches and spasms (although these are symptoms of MS) and grinding nausea mixed with embarrassingly unfamiliar levels of lethargy. Grumpy is one way of encapsulating how I feel.
Gratefully accepting my parents offer of coming to stay for the bank holiday I welcome being distracted as well as giving mum the chance to give the new car a good run! On Sunday I decide to phone the Out of Hours doctor as I can no longer cope with the pain; there are other people in the house now who should not have to have my grumpy mood inflicted on them, it’s not fair. Well it all starts off pretty well; the call centre take my details and a doctor phones back within the hour. This first doctor is well informed and down to earth; he asks me several times if I use cannabis for the pain (I don’t). Then he says are the MS Nurses working today as he’s come down from Birmingham (to work the out of hours shift) and there the MS Nurses are great. My experience is somewhat different here but I let him try to contact them. Five minutes later he calls back saying he couldn’t got hold of anyone; I didn’t think you would but thanks for trying I say politely. The call concludes with a doctors being sent within 2 hours to see me.
In exactly two hours another doctor arrives to examine me; all obs are OK (and I smile saying ‘aside from the MS I’m quite fit). The doctor writes a prescription for antibiotics (I have become very breathless), sleeping tablets (3 for Sunday, Monday and Tuesday) and Fentanyl. By this time its 645 pm and the doctor doesn’t think a pharmacy will be open until the next day. Further research confirms this is the case and identifies the places open next day. Adjusting the only other things available to me to attempt to arrest the pain so I might have a fighting chance of sleeping at least a few hours I go to bed. The addition medication has no effect and I am awake on the hour every hour when I change my sweat soaked PJ’s in rotation before being in so much discomfort I get up at 7 am. We duly go to the pharmacy where we are told they don’t have any Fentanyl (as I suspected) but even if they did the prescription could not be dispensed because it is a controlled drug and has to be written in a particular way which it isn’t! Oh my cup runneth over I think; what it is to be special!
The pharmacist is helpful trying to resolve the problem of the prescription by phoning the out of hours service and explaining the problem. Of course she is unable to as the doctors are currently taking 2 hours to get back to people. Neither do any pharmacies in Cardiff or Barry have any Fentanyl to dispense; as the pharmacist tells me (and everyone she phones) she’s never come across it (as well as having to make small talk with her fellow pharmacy colleagues). We leave for the Recycling Centre (i.e. the municipal dump) where we dispose my 10 year old winter-summer duvet and associated pillows still in the covers. I am slightly alarmed at being told to place (or rather my father being told to place) the items in household waste. Will they end up in landfill or will the textiles be recycled into paper or tyres or perhaps end up in an animal sanctuary?
Now one could just wait for the Out of Hours Doctor to call back but this is going to take at least two hours so St David’s 2 shopping centre wins as I have trousers (three pairs)to be returned to Monsoon (having bought 5 pairs when I couldn’t be bothered to try them on in the shop). Oh and its next to John Lewis where mum is confident a replacement duvet and pillows can be purchased. As we are being shown the range of bedding and I am holding out for natural fibres (goose/duck down) ignoring my mum’s preference for a synthetic alternative the phone rings. Leaving the vast piles of duvets (wondering how many geese/ducks are now wandering naked having been deprived of their feathers) I take the call.
At this point it all goes completely pear shaped and I enter a parallel universe where the only viable weapon is irony seared with sarcasm; I can already predict the outcome of the conversation. In a nutshell the (third) doctor is not prepared to prescribe the Fentanyl as I am asking for a very high dose he doesn’t feel comfortable with (well that makes two of us I think but don’t say)! I explained that community pharmacies didn’t have any and could I go to the hospital; no he says this is only for hospital patients. Continuing he says well if you haven’t had any for five days you can probably wait until Wednesday when the GP opens; so I’m just going to have to cope I ask and he says yes adding have I tried paracetemol! How long have you got I think and don’t say. As it happens I have tried both paracetemol and ibruprofen which didn’t work.
Understandably my parents are less than impressed; I on the other hand am once again resigned to the NHS in Wales. Welcome to my world, its tedious and predictable as well as utterly relentless in its consistent ability to fail to assist the patient to manage their case. But hey it’s now less than 24 hours when the GP opens and I can identify a doctor to make demands of. The question is do I dissolve into a quivering mess in front of the practitioner or present the assertive patient I normally do. That was of course a rhetorical question ladies; standards simply must not be allowed to slip no matter how challenging the circumstances one faces!
As a related aside had I been a heroin addict I rather suspect I might have been able to assess a methodone script even on the Jubilee Bank Holiday. As an addict of illegal drugs the element of public protection kicks in; society must be protection from such ‘scum’ and government money will be channelled through third sector organisations (so as not to get ones educated hands dirty) to deal with the matter. Oh how did I become quite so cynical? That would be practice and experience reinforcing the way the world actually works. But as I always say I mustn’t dwell on it; it will get resolved one way or another no doubt rather like the problem associated with the euro bail out – I wonder if Christine Largarde might be able to assist?