This letter is going to my GP overnight. The title of this post is not hyperbole – if he won’t change his mind I can see no way forward.
Dear Dr. Xxxx,
I have just had a phone call to tell me you have refused to issue a prescription for morphine sulphate solution (Oramorph), as I am over-using it.
I am not.
At the rate of 40ml per day (10ml every 6 hours), a 300ml bottle lasts 7.5 days. The current bottle was started at 18.00 on November 27 – that’s 7 days ago today. I have enough left for tonight and possibly tomorrow. That is not over-use, that is using it as prescribed. And absolutely as needed.
The prescribed dose is 5-10ml every 6 hours. As I have said many times, to both you and Dr. Bates, 5ml is totally ineffective and a waste of a valuable drug, and since the change to 5-10ml I have been able to take the dose I need when I need it (i.e. 10ml 4 times a day, whereas before I had to often go without no matter how badly I needed it**). I therefore take 10ml. I’ve told you this. I believe the nurses have done so, too (and if you want to know how much pain I’m in, just ask Staff Nurse Xxxx – hell, ask any of the nurses currently attending me).
**I am in vastly more pain now than I was then, and it’s worsening by the day; that’s no longer an option.
Mr. Xxxx (vascular surgeon), is hopeful that if the increased Zomorph can get my pain under control it might reduce my Oramorph use. However, it took three weeks for me to get that prescription (issued a couple of days ago), so I have no idea yet whether it will prove effective. So far the indication is that it will not as I was in more pain than ever this morning. That, though, could be because my ulcer is growing by the day, and the pain increases accordingly.
Currently I take a dose of Oramorph at 06.00, simply to be able to get out of bed. I take another at my dressing change usually towards midday (it might not be exactly 6 hours – it depends when the nurses arrive). The nurses would prefer me to take it well before they arrive, but that would mean it would wear off well before the next dose at 18.00 (there is no leeway), sand I also take a dose at midnight. If I’m really lucky that might get me an hour or two of seriously disturbed and painful sleep – even with the maximum dose I’m allowed I am in intolerable pain round the clock, hence Mr. Xxxx’s concern.
In the Summer when my ulcer was a lot smaller it was possible to get by, quite often, on just two 10ml doses a day, 06.00 and midnight. My ulcer, now, is roughly twice the area it was then (it will soon completely encircle my leg and the nurses tell me it’s one of the worst they’ve seen – and that’s the older, experienced nurses, who run the ulcer clinic, not the youngsters), and is considerably more than twice as painful. You seem to be the only person who can’t comprehend the degree of pain I have to contend with 24/7. You have, of course, never seen my ulcer, except for a photo, which really doesn’t show the full horror of it, or the smell. And, of course, you can’t see pain.
I should point out that even when you had my dose set at 5ml, every time I was admitted to APH it was immediately increased to 10ml and that dose was recommended in my discharge notes. That dose is not going to harm me – were it going to it would have done so by now. Neither is it responsible for the repeat bouts of pulmonary oedema (about which I’ve written to you asking for help, to no avail).
Let me be clear – if I am deprived of Oramorph I will no longer be able to look after myself. I live alone – you know that – so what am I supposed to do? What you are proposing puts more than my health at risk – it puts my very life at risk.
It’s enough of a challenge as things stand, with Oramorph as a crutch – by which I mean physically, NOT psychologically. I’m doing well if I can get washed and shaved twice a week – I simply can’t stand for long enough – and for the same reason I am able to cook maybe once a week if I’m lucky so, when I can, I cook stews and soups, and freeze them (I still, apparently, need a high-protein diet).
And, of course, the pain from my ulcer and the unending lymphoedema pain are far from all I have to contend with. I have had OA in my hips since the age of 32 (left hip originally, now both), and FMS since my late teens. I was struck by lightning in 1983, which left me with wide-ranging and painful joint problems, and I was diagnosed with ME, and the intransigent pain that goes with it, at the RLUH in 1995, 10 years after presenting with it.
I also have an extremely painful condition, as yet undiagnosed (I was too ill to submit to a nerve conduction test in August** – 2 days later I was admitted to APH), which is causing me to lose the use of my hands (originally the right, now both), and chronic shoulder pain from using crutches (which I believe are also the cause of my hand problems).
**I still am – I do NOT need more pain in my life from a diagnostic procedure.
When it comes to pain I have enough for half a dozen people, and now you want to remove one of only two effective analgesics I’ve ever managed to get (the other being Zomorph). That beggars belief, it really does. I have a right, surely, to effective pain control and, without Oramorph I won’t have that.