Being ignored - Stuck in the NHS trap


Need some tips on getting the NHS system to work for me as I have fallen through the cracks.

I have a long history of back pain. Left with chronic back pain daily sciatica, permanent nerve damange (although no test carried out to confirm this), very limited walking ability off work for a few months now on hugh variety of meds including fentanyl patch and oxynorm tablets.

I have no real diagnosis as MRI (which I had to pay for privately a few years ago) was inconclusive. I had to go part time last year and am worried I may lose my job as have had all the adjustments occupational health have suggested and part time was my last chance. Can't bend down to even get milk out of fridge so it may be a while before I can return. My work involves a fair bit of movement but I'm not stuck at a desk so I can move about to suit myself quite a lot, albeit often changing position. I still need to do a lot of walking once a week so I need to be quite fit before I return.

Sorry this is so long - basically I had spinal injections once before the they really helped but have been refused them since, had accupuncture which helps a lot, particularly for sleep, had physio which helped but pain nurse advised not ready for this should try accupuncture to reduce pain first as she knows this works for me, told no longer available on NHS, asked to see consultant attached to pain clinic but no appointments available as I AM HAVING A TEXT BOOK FLARE UP, even though the pain had me almost suicidal over the last few weeks, palmed off with pain nurse to be my contact and explain things but can't get her on phone! Going round in circles and feel the system has washed its hands with me.

I feel I need full tests and updated diagnosis and help to sort out my meds properly as over time they have just kept increasing as my body gets used to each combination. Why does nobody listen and provide a decent service? Help, suggestions please, sorry for the moan.

18 Replies

  • Many of us on here can relate to what you are experiencing. The hospital department you are with is not for emergencies. Successful management of chronic pain demands the patience of Job and the suffering of a saint! Someone should ring you back, it's not acceptable to leave you high and dry do ask if there is anyone else you can speak to as you are desperate. However, as we all know, options are limited on treating pain. Sounds like you need a re-assessment. You'd be better posting this on the questions section as not everyone on here will look in Posts. Best wishes.

  • Thanks cal

  • the NHS has gone to pot, i am the same with back pain my back was damaged whilst in the army and i was discharged due to the damage and was told that as it was due to the army's fault i would get priority treatment but any time i go either to the local hospital or my local doctor none of them seam to care several years ago i was told after my MRI that i had three of my bones cracked L2,L3 and L4 but on the recent MRI i was told that there is no damage showing up and that i have nothing wrong with my back when i told them i had been told i have three bones cracked they asked who told you that, they do not know what they are talking about when i told the doctor that it was in the same hospital he just shurgged his shoulders then told me my old records have been destroyed so i could not prove it, the same thing when i went back about my knees and right hip when i was 38 i was told that they were wore out and that the doctor had never seen anyone so young with that amount of damage but due to my age he said he is willing to replace them but it would be better if i could manage to wait 12 to 18 months as the replacments do not last that long and they can only replace them twice and that if i had them done now that by the time i was in my 60's to early 70's i would not be able to stand up never mind walk so i said i would wait and left it close to 20 years as my pain medication for my back was cutting down the pain from my knees and hip when i went back earlier this year after the xrays the doctor said neither my knees or hip has any wear and that they will not do anything about them and again when i told them that the last time i had them looked at i was told that they were completely wore out and again when i told him i had been told they were wore out he asked who had told me that as there was no wear showing i told him that it was in the same hospital and again he just shrugged his shoulders and said he does not know why the xrays now show no wear, on the news on TV that night it said that the NHS had decided to cut down on the hip and knee replacements to try and save some money, so now i have no faith that they have the patients need they just now want to cut costs and balance the books.

  • Thanks poppy. I know what u mean about being questioned about old results. Fed up with missing records and being treated as if u make up own diagnosis. In future will b taking someone with me as I don't trust my own memory and want some back up. It defo sounds like cost cutting.

  • Micro fractures heal leaving no trace. Even small fractures can heal and leave no trace. Then there are the doctors that want you on a waiting list so that they can call you in when they have time on their hands whether you need the operation or not.

    Case as example: told that I had arthritis of both knees but I would be dead before they would need operating on. Moved to another area and my new doctor wanting to have a specialist check how bad my arthritis was. Next thing I know is that I am on his waiting list to have 2 total knee replacements.

    He operated on my best knee first (right knee) and planned to do the second one three months later. Hence I have a botched up right knee and my left knee is still working. In other words I had an operation that I didn't kneed and now I am still in pain with my replacement knee.

    I suggest you don't listen to doctors unless you have THREE second opinions and then make your own mind up as to what you want done.

  • it was doubtful the fractures healed as it was almost 20 years after my accident that they found them on a MRI, also at the time the doctor wanted to operate and fuse them all together but he warned that for every one they did there was a 10% chance of crippling me and as they had to do the one above and the one below they would have to do 5 so i had a 50/50 chance of being crippled for life so i said i would leave it until it got so bad i can no longer walk as at the time i could put up with the pain but now i am almost unable to walk they say there is nothing they can do except for giving me pain medication which i hate taking i am now on 26 tablets a day and liquid morphine when it is so bad i can not go any longer.

  • I would advice you go back to your GP and for second opinion on your condition. Regards Physio, I have ended up paying for it myself, in order self management my pain. Some CBT may also help which is something you could speak to your GP about. Hope this helps, good luck

  • Thanks M. Am going back to GP but only decent one is part time and got to wait till Frid to call for an appointment two weeks after that as system won't allow booking till then but plan to ask for second opinion. Feel everything is there to put u off, it,s exhausting. Have had some therapy and did help with relaxation & visualisation exercises but I'm rubbish doing it myself & tend to fall asleep lol.

  • CBT may not be for you, there are other therapy out there. I know it's exhausting but 30+years of self management it does not get any easier, sorry -:(

  • Thanks

  • Hello BOB here

    Many people on this site suffer chronic pain in some form or other, most would agree that a proper diagnosis sometimes takes a long time to come to the surface, I went through a period thirty years ago in trying to prove my condition was very much a chronic condition, and this entailed private treatments over an extended period of time.

    Eventually I got my diagnosis grasped in my hand and went back to the GP, proud that I proved my point. Since then I have never gone back to a private practice and my treatment has been undertaken by the NHS.

    Your Post has not said what medications you are taking with an execption to your narcotics , Also what treatments the Pain Clinic has recommended.

    What condition (s) you/they think you have, Your GP seems to have all bases covered by His introduction for you to Pain Clinic.

    The pain Clinic would have instructed you in relaxation, pacing, medication management, and Tens, also you seem to have been introduced to a physio.

    Your pain medication that you say you are on is for moderate/severe pain.

    One thing I picked up is when you say text book flare up, When we have a flare up their is no real text book flare up all are different as chronic pain is very selective and effects all patients to a differing extent, Even the extent of pain differs for all patients

    What has brought this problem on ? have you had an accident, or have you damaged yourself at work, it is just I am trying to work out what has caused your problems

    Also I understand that you are suffering from pain, you will get support here as this site is very active and understanding, it is just I cannot put my finger on what you are suffering from. Although I am not a Doctor and unable to diagnose what your problem is

    What now does your GP think regarding your problem what is his next port of call. They cannot just set you adrift

    All the best


  • I suggest a sports physio. They know the ins and outs of pain and can treat some of it. With long term pain there is a mix of pain associated with the original injury, compensation pain, and trigger pain. % of each is relative to the injury, length of time and how your brain is wired up,

    The sports physio will treat you with a variety of techniques and this may include accupuncture. They will work on the trigger and compensation pains first.

    You may get a couple of days following treatment a bit like a flare up. This is normal and is just your body getting used to being back in a "normal" position. This will lessen each time.

    They will give you specific exercises to do, and these will vary as you progress and some you will have to do for ever more.

    This will cost but if you look at is as an investment in your health then what's stopping you? If they think you need a few sessions, ask about what you can do for yourself to lessen the amount, or have them more spread out ie one a month instead of one a week.

    I found my sports physio when I had a flare up a few years ago, my whole body had gone into spasm, the gp gave me pain killers that made me a zombie. It took me 20 mins even with pain killers to get downstairs. I was as bad as I was when my pain started. I only needed 3 sessions which were a mix of manipulation, Bowen, massage, heat, and trigger point therapy. I was given a battery of mainly stretching exercises, half hour walk twice a day, and shown how to do the trigger points.

    I will be honest, It didn't take all the pain away (but pain killers don't), about 35%. But continuing with the exercises strengthened my body it gradually reduces over time. I was taught to read the different pains, and advised on a few daily living changes. I also do meditation, distraction, relaxation, pacing, mindfullness and I work from home so I can fit work in around my pain buster regime. It's a lot of work and at the beginning can be time consuming, but now I have 80% less pain than the original pain. It trundles along in the background, every once in a while it reminds me its there if I over do things.

    Now if I get a flare up and I can't sort it myself, I usually just need a session to kick start it. In 11 yrs of chronic pain I've been to 3 initial sessions and a single session. So although each session seems pricey individually at £30, if you divide the cost by 11 years, then its extremely cheap and I'm not paying out each month for painkillers that don't work either. So for me 30 x 4 = 120 / 11 = 11(near enough) which is less than £1/month.

  • Thanks Zanna

    Just started on massage @ osteopath £33 for 1/2 hour session, gone part time , so 1/2 wages, difficult but as u say investment, lucky in Scotland don't pay for meds now but was very costly in past. Also tried Bowen but not sport physio for some time as one I tried before was too rough. You sound as if u really hit lucky with yours. Glad it helps.

    Did have mini flare up on top of pain after 1st session with osteopath but will persevere as I expected this.

    After using this site now realise main thing I want is to reduce meds with help of GP but feel I will have to pay for any other help as NHS just not able/willing to go any further but do feel let down by system, especially when I can't cope with pain.

  • I could have written this question myself. Every detail of your letter applies to me including inconclusive MRI scan , meds not now working, NHS not helping . I have a massive flare up also at the moment for no apparant reason. Back from a holiday in the sun 4 weeks ago is the only difference in my situation but that does not present a remedy or reason. Another MRI scan is required to reveal what is going on as ,as with you, I have no idea why I have suffered for 6 years with this back pain.

  • MRI will not show up muscle spasms. Only someone with hands on treatments can detect them. GP's often do not check for muscle spasms. They rather listen to your symtoms of pain and prescribe pain killers instead. While what you need is some help from someone who knows how to stretch muscle in spasm out.

  • Your story is familiar. Pain clinics aren't resourced enough to deal with the vast numbers of people suffering chronic pain. That said, the nurse should be able to ring you back. Try writing a letter of complaint which is polite but also outlines what you would like the hospital to do - BUT don't send it immediately, give yourself some time to sleep on it just in case they ring you back.

    I've gone for a mixture of NHS pain management and paying privately for physio. NHS physios are great but they are restricted by the fact that it's the NHS so sometimes they are limited as to how long they can see you for. Anything that you pay for yourself is costly but it can also be a good investment. I know you're trying osteopathy for now, but there might be an osteopth or physio that can also do acupuncture as part of your treatment.

    It took me 6 years to get a diagnosis - and there is still no name for what I have - and another 2 years of fiddling about with different treatments to get to a point where I feel like I am winning more than losing. If you've got a plan (which it sounds like you have) and a longer-term goal(you want to carry on working) then you are already winning, even if it's such damn hard work.

  • Thanks to everyone sorry if I missed giving a personal reply, all advice appreciated. Only had 45mins sleep last night so will have to b extra careful today and can't type much. pain always seems worse if on own at night but overall I know I am improving but this has been the mother of all flare ups.

  • Have you ever been checked out for inflammatory back pain? (aka spondyloarthritis). Just wondering if its worth asking for a rheumatology assessment to rule that out. If by chance it is inflammatory then there are definitely better treatment options.

    Have a look at the checklist here: and if you do tick all the boxes, print out the list and take it to your GP. Don't let them tell you that it isn't inflammatory if you have normal blood markers (ESR or CRP) for inflammation, because in spondyloarthritis they are frequently normal.

    If you don't tick all the boxes for inflammatory back pain, then just ignore this post.

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