To want to take this further?

[esk1mo]

Hi all, long time lurker but have never posted (although have often thought about it). Bit of a back story here...

DP herniated a disc (L4/L5) in his spine in May 2013. He was given painkillers and told he wouldn't need an MRI unless the pain persisted for months. He was on tramadol, codeine phosphate, nefopam and gabapentin. He never went over the allocated dosage and always requested new medication when he had fully ran out (ie. not going back asking for more after 4 days as if he were addicted). Despite being in agony daily (he cried from the pain frequently) he wasn't given an MRI until October 2013.

May 2014 he underwent operation for this herniated disc. He enjoyed around 6 months pain free before it started to creep back in. Although sore, it wasn't unbearable. It become gradually worse and over the last 8 months his pain has been worse than ever before. He attended his GP to ask for medication (that he was taking in 2012) but was told she couldn't give him anything until he was given an MRI although she did sign him off work. He was given an MRI in December which showed multiple herniated discs (all at lumbar level) and that his previous L4/L5 herniated had now ruptured and spread bilaterally, affecting both sides of his body (pain down both legs, hips, glutes and ribs). He can barely walk without breaking a sweat and wincing in pain. After receiving these results the GP agreed it was very severe and referred him to a surgeon and gave him a prescription of codeine phosphate. He thanked her and assumed that while he was waiting to see his surgeon he would continue to take this medication.

This was not the case. Today he returned to see GP to request more codeine (he was given 60 pills 3 weeks ago, you can take up to 6 per day). He was denied this. The GP who saw him FELT his back muscles and said he should take an anti-inflammatory. DP said he couldnt as he they made him throw up (despite taking omeprazole too). GP told DP that there wasn't anything else he could do and he wasn't allowed to give out opiate based medication. DP told reception this and asked if he could see another GP. Reception told DP that the GP he saw is indeed allowed to prescribe pain killers, he just didn't feel necessary. DP was told to phone NHS 24 if he felt his pain was so severe.

I am fuming. Not only has he taken multiple painkillers responsibly for over a year, this was when his condition wasn't as bad as it is now. He is at the stage now where he cries because of the pain. He has wet the bed on more than one occasion because he has crowding of the cauda equina nerves (which I believe are linked to bladder and bowel?). He is still signed off work and waiting to see surgeon on the 2nd of Feb.

I want to take this further but unsure who to contact, AIBU to want to complain to someone about this? I have asked to speak to practice manager but was told he was not in until Monday and when I mentioned my DP's name they said 'in that case he has already been told what to do".

I don't want to believe it is a race issue but my DP is mixed race (half Scottish half Caribbean) and for comfort he will wear jogging bottoms some days instead of a suit or jeans to see doctor. He asked a GP previously if this was an issue and she said 'it doesn't help.' I don't believe that any form of appearance should be taken into consideration when helping a patient. I have never been in a situation like this before and I am not one to complain about things but this feels so unjust and I feel there must be someone I can write to about this? My MSP or the GMC? I must mention, I am a white female and currently on a repeat prescription from the same GP surgery for an opiate-based painkiller for a hip condition, which although will require surgery at some point, is not as serious as my DP's condition. They have no issue giving me a repeat prescription for this. AIBU?

Thank you all
Sorry for the length

Hey! Sounds horrifically painful!
I can provide a bit of pharmaceutical perspective as a registered pharmacy professional that Tramadol was re-classed as a schedule 3 controlled drug in Aug 2014 and therefore prescribers had to considerably tighten the reigns on dishing it out as often. Codeine is also less frequently prescribed as the level of addiction is so high, dependancy to codeine has become a bit of an epidemic so prescribers are encouraged to issue prescriptions for NSAIDs such as Naproxen alongside a PPI (eg omeprazole) in place of an opiate based drug.
I do believe you should be able to request an appointment with a different GP if you feel the treatment offered by said GP is inadequate.
Best wishes and hope you resolve soon!

Oh and to you both. This is terrible for anyone but he is still a young man

Don't assume all doctors are good, understanding people. At our surgery we have a few (particularly the older ones) who are truly awful - intimidating and arrogant, and make you feel you are wasting their time. They're unpopular amongst a lot of patients, meaning they are always the only doctors available as everyone avoids having appointments with them. Of course the majority of GPS are brilliant and do a fantastic job. I would definitely ask for a different GP in the surgery to see him if possible. You shouldn't have to give a reason for doing so either.

White middle aged female with severe sciatica last year and tramadol prescribed by emergency gp went to gp to sort medication after weekend visit to hospital and emergency med prescription for 5 days only and when he asked what I had been given his comment immediately without any assessment of me was well you wont get that from me. I actually could not even sit not even for 2 seconds due to pain. I lay on the floor at the hospital and cried in pain so it was severe. I sorted alot of it though private osteopath although even 9 mths down the line it is still ever present although probably about 85% sorted. Sorry but NHS ans back issues just don't bother in my view unless surgery is the only option available

Acupuncture might help, if you have any TCM practitioners nearby, although cost may be prohibitive (£60 per session where I am), many people swear by it.

How did he get on at the ooh op?

outtogetyou, the op absolutely can complain on her husband's behalf with his permission. It's not at all unusual for a relative or friend to do this. People often can't face it when they are ill and vulnerable.

We went to the out of ours GP at the hospital. She was really concerned about his bladder symptoms and decided to phone neurosurgery for their opinion. They said they'd like to see him as they weren't happy with his symptoms. We sat in the waiting area and I was told the neurosurgeon would phone us, we waited until around 1:30am (out of hours appointment was at 10:50pm) before being told there had been a mix up with his surname and we were escorted to a bed to wait. The nurse then told us the neurosurgeon had to rush to theatre for an emergency and she had no idea when he would be able to see us, so we came home, still without any pain relief

Have been left a voicemail at around 4:30am from the neurosurgeon who apologised and said he would like DP to get in touch to discuss. At least they are taking him seriously but DP is already seeing his consultant on Thursday and really wanted nothing more than some pain relief until his consultant can (hopefully) write him a prescription. When DP has had a coffee and a shower he will call and speak with neurosurgeon

rb68 that is so awful. i do understand the addiction risk, but surely there are red flags that someone is going through medication too quick. also, surgery has been recommended so really he'd just be taking this for a few months. after his last op he went cold turkey from everything as he felt so pain free.

Your poor dh.

I too have herniated discs (6) in total. My gp told me to take paracetamol as it was probably muscular. I couldn't walk/sit whatever without being in agony.

Eventually I managed to see another gp who requested a MRI scan, which diagnosed my slipped discs.

Back care by gps is not very good in this country. My first gp didn't take my symptoms seriously, even though I had loads of slipped disc symptoms and am in a job notorious for damaging backs (am a registered nurse, and when I trained we had no lifting aids).

agedknees that doesn't surprise me poor you, did you end up having surgery?

We are going in for 4pm to do another MRI to see how the cauda equina nerves are doing, and they said they will try help with the pain relief. hopefully it isnt too bad and they don't keep him in to operate or decide to operate next week because he will not be happy, he's terrified of hospitals.

Good luck with the MRI. Ended up with physio, taken off ward nursing to do clinics and told absolutely no lifting at work/home.

Hope your dh gets a good outcome.

I think the dates of his requests for painkillers are significant. As jenbob said, tramadol is now a controlled drug, so GPs will try to use alternatives. I'm not sure why he was originally prescribed tramadol and codeine, as they both work similarly and prescribed together they will add little benefit and increase side effects.

I'm very glad you've now got neurosurgical input as bladder/bowel dysfunction with back pain are 'red flag' symptoms which should be treated as an emergency.

'Try to help' with pain control is not good enough though. I imagine this isn't an outpatient appt for MRI, as results will need to be reviewed urgently. I can't imagine the surgeon wouldn't be confident to prescribe basic analgesia (paracetamol, weak opiate like codeine and nsaid), even if they don't want to prescribe any thing more specialised like gabapentin. I agree with a pp that an nsaid would be helpful - there's quite a few he could try, perhaps with an anti-emetic if that remains a problem.

The timing of the appt probably won't be helpful with getting good advice and pain relief though, as the pain team will probably have finished if surgeons want advice and hospital pharmacy will close at some point for a supply. If he is sent home tonight, hopefully they might be able to supply something from the ward/department, but if not, push for a prescription that can be taken to an outside pharmacy (FP10) and hopefully there'll be a late opening pharmacy (presume you are in city given your local hospital has neurosurgery). Do ask for a referral to the pain team, or ideally to be seen by the team if he remains an inpatient.

I find that GPs all have differing ideas of how to handle pain, ranging from throwing pills at you to, 'have you considered focussing on something else?'

Where I live ( Northern Ireland ) your husband would have waited over a yr for the first MRI and then a few months to see the surgeon. At that point he would have gone on his list for surgery.
He would still be waiting for his second MRI here......

The majority of your husband's pain would be managed by pregabalin. Painkillers don't work for nerve pain.

With regard to the GP, I would definitely complain. Have a look on their website or ask them about complaints procedure. I think there are PALS teams for primary care, thought I'm not sure how you contact them. I think there are at least 2 issues: the lack of pain relief, and missing red flag symptoms which should have warranted an emergency referral to get MRI. In my area the procedure would have been advice to go straight to ED with a referral requesting urgent MRI, which we would do within about 12hrs (assuming ED docs and radiologist agreed high risk of cauda equina). I'm really not sure on the race issue - perhaps it might have played a role (even if subconsciously on the GPs part) but it would be impossible to 'prove'.

Hopefully the underlying cause of your dp's back pain may be dealt with quite swiftly now, but TENS machines can be very helpful (and there are clinical trials that say so) as well as other non-pharmaceutical remedies. Again this is something the pain team could help with.

Good luck and I hope your Dp gets sorted out. Don't let him struggle on in chronic pain, it's a miserable way to live and leads to a cycle of depression fuelling pain and vice versa even if the cause is dealt with.

MRI showed no changes from last MRI so no need for cauda equina operation which is good news. Nurse is off to get some codeine until his meeting on 2nd Feb.

Neurosurgeon suggested DPs urinary symptoms may be an infection (eg UTI) or chlamydia? He seemed confused about chlamydia comment and she went on to say its better to know, just take a couple of pills to treat. DP again wasn't sure what she was getting at. As she was leaving she said "if you (points to DP) get tested and you end up having sex , then you're to blame (points to me)" !!!!!! Wtf! I said "we've been together for 4 years, I was tested last year as part of pregnancy, DP was tested at start of relationship." She kind of just shrugged and left the room. We are both slightly gobsmacked, very weird comment to make. Athough he doesnt have cauda equina, he has crowding of the CE roots, so his urinary symptoms could be that? Or a UTI,or prostate, any of those before I would ever think DP would have unprotected sex behind my back

dont know if i typed that clearly, she meant if my DP tests +ve for chlamydia and is treated, we then have unprotected sex, then he gets reinfected and I am to blame.

Like i said i tested -ve last year, and DP tested -ve 4 years ago. so unless he's cheated in the last year, which i very much doubt, then her comments are very uncalled for. DP said he wants to get a test just to prove her wrong.

Observationally - do you think the stress of having a partner is xs pain is making you view pretty standard or throw away commentary as a personal slight?

ronald not at all, im a very laid back person, always with a sense of humour and although this situation is annoying, im not feeling stressed.

i think telling a grown woman she is to blame if her DP has chlamydia is ridiculous. i understand mentioning STI test but she continued on until we were all uncomfortable, including her. i was literally open mouthed as she left! we have never, ever cheated. and im not entirely sure wetting the bed is even a symptom of chlamydia.

I have major issues getting codeine as I take lots of it.... I can have it every two hours and four at a time. I suffer from lots of medical problems though including short bowel which means nothing 'sticks' including the 100 Imodium I take a day.
I suppose they are being careful. I just carry my info.

DP has suffered terrible back pain for 2 years and we've been so disappointed with the way he's been treated throughout by the doctors.

In November, DP had an awful flare up & he was bedridden for 3 weeks The doctor's answer was just to prescribe more drugs.

What has been truly life changing has been a fabulous, fabulous osteopath. We've been seeing him since late November and DP is now walking, driving and able to climb stairs completely normally. Bearing in mind that he couldn't get out of bed or use the loo by himself, the difference is amazing.

Where are you based OP?

She said , if you get tested...pointed to your partner
And you have sex
Then you're to blame

Couldn't she have meant wait for the results or else any spread of any potential U.tI or chlamydia is down to you guys not waiting

She didn't know your info
You could have just met
Had an open relationship
Split and rejoined

You sound like you are looking for slights, genuinely.
Try to see if there is another way to look at things. Accept sometimes people are so used to saying the same things to patients and while it doesn't fit everyone but fits most, it'll do

So far both by a series of GPs and now a neurosurgeon have offended or potentially discriminated against you guys
I understand that being in pain and seeing in pain warps our processing skills but try to show some compassion.

So your DP has a disc protrusion? I hope that he either gets a drug regime that allows him to wait it out or a surgical intervention. He might want to look into how disc surgery v waiting works regarding results

ronald 2 GPs and the lady at the hospital. but we have also come across many healthcare professionals that have been amazing to us, i guess we are just unlucky with the weird ones... i am not one of the professionally offended, i dont complain at restaraunts, or when trains are late etc.

if i had a patient presenting with bladder issues and cauda equina was ruled out, then UTI/cystisis/prostate etc would be my concern, after she mentioned chlamydia he said "no chance, we have only slept with each other since tested 4 years ago", so why did she have to persist? very strange but heyho, life goes on.

uncomfortable glad that you were able to find something that worked. i dont think an osteopath would touch him atm, nor a physio. we are just waiting for surgery now, & maybe more meds from consultant. im going to get him a TENS machine though, pp have said they help

Glad to hear it.

Genuinely as it is only a protruding disc look into the outcomes of avoiding surgery and managing with drug therapy and physio
Even serious prolapsed and herniated discs often end at the same point as surgery 1-2 yrs down the line but without scar tissue or further trauma placed on the spine above and below the operative site if he can waiting is usually a better option

If you can't get anything prescription wise, paramol is dihydrocodeine and paracetamol and OTC and works better for me than prescription strength cocodamol