My Experience

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I am 33 years old and here is my story to date, as per a complaint that I have registered with my local Pennine NHS Trust.

To give a brief history on Monday 14 August 2006 I collapsed at home with severe groin pain. I attended my GP who requested a blood sample and I was told to rest, if symptoms were to increase then I was to go to A&E. On Tuesday 15 August I received a telephone call from my GP stating that my white cell count was raised and that I was to report directly to a ward at Stepping Hill as I has a suspected appendicitis.

After being admitted to the ward I underwent a series of blood tests, scans and x-rays. Other than confirming that I did not have an appendicitis no condition was diagnosed even though I was suffering from excruciating pain, I was given painkillers and told to go back to see my GP.

I was prescribed Arcoxia 120mg and Metronidazole 400mg for the sickness. After this I was prescribed Co-codamol 30/500mg and Ibuprofen 400mg with Lansoprazole to protect my stomach and Lactulose to combat the constipation.

Again assumptions were made about my condition and my GP requested an investigation into whether I had developed Endometriosis again, so on Monday 23 October 2006 I was admitted to the surgical unit for a laparoscopy, which did not show any changes to substaniate this diagnosis. After the laparoscopy I was left with a very nasty infection that took five doses of antibiotics to clear, the two stitches that we used to close the wound came undone the day after and I was left with green puss leaking from it. The doctor that performed the laparoscopy suggested that I have my coil checked and that the pain could be a result of my back.

On 1 November 2006 my GP checked my coil and took a swab of the area surrounding it. The results were negative for infection.

I returned to work on 4 December 2006 only to go back on sick leave 8 January 2007.

On 24 January 2007 I attended physio therapy and was assessed and given ten exercises to do in repetitions of ten to be done four times a day. When I queried the Physio Therapist as to why I have been referred to physio without first having a scan, I was told that I couldn't expect a third intervention, as the first intervention were the investigations into the appendicitis, the second intervention being the laparoscopy. However, on 12 February I was unable to get out of bed, even after taking two co-codamol and two ibuprofen, and I was left with mobility problems that lasted for over a week. On attending the last physio appointment, I was informed that I needed an urgent MRI scan to identify the problem and that I was not to continue with the exercises.

In February 2007 I was prescribed Diclofenac 50mg, but these were not effective so I was told to continue with the co-codamol and ibuprofen. On 28 February 2007 I attended an appointment with a senior Physio Therapist and she told me that in her opinion there was nothing seriously wrong with my back, but I should keep the MRI scan appointment to be on the safe side and to complete some minor exercises.

On 5 March 2007 I underwent an MRI scan at Withington Community Hospital and had further blood tests taken on 3 April 2007. The results of the MRI scan were that I have prolapsed disc and enlarged lymph nodes in my groin.

I attended an appointment on 10 May with a Consultant at the Trauma & Orthopaedic Clinic and the first thing out of his mouth was that I needed surgery to remove the prolapsed disc. On 15 May I attended an appointment at the General Medicine Clinic, only to be told that it was the heart clinic and that I had been wrongly referred!

I had a smear test on 18 June 2007, this was negative.

On 26 June 2007 I gave up smoking in anticipation of the operation.

On 6 July my GP prescribed DF118 Dihydrocodeine 40mg and senna to relieve the constipation.

I attended an appointment with a Consultant at the pain clinic and he told me that the waiting list for the injection was longer than the operation waiting list. He said that the injection could possibly reduce the symptoms but this could not be guaranteed.

On 26 July 2007 I attended an appointment with the Occupational Health Unit at my work place and we agreed a phased return to work commencing on 23 August 2007.

My pre-op assessment was on 16 August and the Consultant informed my that it could be possible to shave the offending part of the disc, instead of removing it. However, I received a telephone call to say that they had not taken enough blood samples and that I had to attend again to have more blood taken, which I did on 13 September 2007. The surgery was scheduled for Monday 8 October and admission would be on Sunday 7 October.

On Thursday 4 October I telephoned the surgical ward to arrange an admission time and to inform them that I had developed a cold. I was told that I should be okay to proceed with the operation as colds only last a few days and that I was to telephone the ward on Sunday to obtain an admission time.

On Sunday 7 October 2007 I telephoned the ward as agreed and was told that I could not be admitted due to the cold, I was told to contact the waiting list office on Monday morning to organise a new date.

I telephoned the waiting list office on Monday 8 October and explained what had happened and the person was very cold and unsympathetic, she basically told me that it was all my fault and that they were now booked up until February, oh but there is an opening a few days before Christmas. She also had a go at me for wasting surgery time and stated that I have only been waiting since July, in which I replied that this has been ongoing since August 2006. By the end of the telephone call I was reduced to tears and was left feeling very depressed.

My mother contacted the waiting list office on Wednesday 10 October to try and see if there was anything that could be done to expedite the matter, however, the person was rude, sarcastic and uncooperative, when my mum explained that she had given up her job to look after both me and my daughter, the person told her that she's better get back to work then, shouldn't she and how is my pain her fault, and what does my mum expect her to do.

I telephoned the waiting list office again on Friday 12 October to try and discuss the situation as I had a management review meeting at work that morning. I explained that as a single mother I cannot take an appointment too close to Christmas as this would ruin my 8 year old daughters Christmas and that this could my terminally ill Nannies last Christmas. I also explained that I did not miss my operation date through any fault of my own, that I was acting on the guidance of the ward in respect of the cold and had I known I would have contacted the waiting list office on the Thursday to reschedule. I was told that there are no foreseeable surgery dates, I asked to be considered for a cancellation, as all arrangements are in place for me to be admitted and that I live close by.

On 19 October 2007 I went on sick leave again and have been signed off work since. I attended a GP appointment on 26 October and have been prescribed the following medication; DHC Continus 120mg tablets, Movicol 13.8g Oral Powder Sachets (laxative to combat the constipation caused by DNC Continus), Fentanyl 25micrograms/hour patches, Metoclopramide 10mg tablets (anti-sickness to combat the Fentanyl), Naproxen 250mg tablets and Omeprazole 20mg capsules (gastric protection from Naproxen). I am also taking Mirtazapine 45mg for clinical depression.

I contacted the waiting list office again on Monday 5 November 2007 and was told that the Consultant had scheduled additional dates, again I was offered a date close to Christmas namely 21 December. I find this very beculiar as this is the same date that I was offered nearly a month ago, and yet there have been no cancellations?

It has been nearly seventeen months since I became symptomatic and yet I have been wrongly diagnosed, had an unnecessary surgical procedure. I am on the verge of loosing my job as my team cannot assimilate my work load and my sick pay is coming to an end.

It seems that the longer this goes on the more damage I am sustaining to my back, I have started to develop numbness in my right foot now, constant saddle numbness and problems passing urine. My knee joints and right hip joint have also decided to join the party and my legs love to give up while walking so I end up as a heap on the pavement with no good samaritans running to my aid. I really need to get back to work to support my child and I can no longer keep depending on my mother to assist me as she is 62 years old, has high blood pressure, asthma and diabetes.

So my predicament is that my work has just issued capability proceedings against me, which is in two weeks time, so come Christmas there will be no santa.

GOD BLESS OUR WONDERFUL NHS! :x

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  • Posted

    Oh and to add insult to injury I received a response to my letter of complaint and had to go to the Post Office with £1.24 to pay to unpaid postage before having the pleasure of reading their standard reponse of the Trust has 25 WORKING days to respond to my letter!!!
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  • Posted

    hi jenie dont understand what all that was about but , sounds like your in the same situ as most of us. gail
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  • Posted

    [quote:25adb98977=\"gail\"]hi jenie dont understand what all that was about ,,,[/quote:25adb98977]

    It was a terrible disc prolapse story,, I didnt see anything too inflamatory so I dunno why its moderated smile

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  • Posted

    All

    I temporarily removed the post so that we can read through it properly and for no other reason. We recently were asked by Darren to remove some of his posts - so we are just being careful for you.

    As you can see, I have now the post back

    Lin

    Patient Admin

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  • Posted

    hi jenie what a heart breaking tale of the nhs system, which i myself the same as you have been left since oct 21 2005 with significant prolapses and compression with displacement of the spinal cord at c5-6 and c6-7 and been passed from piller to post this doctor and that, i like you are on the verge of losing my job as i have been on sick leave since feb(i love my job and the financal gain from it)but un like you havent been given a date well strictly speaking i have several and every one of them false and now ive been told around christmas i really do not know where to turn ive involved some influentail people but as we can see the hospitals broken no rules as the waiting time is marked from when i was placed on the surgeons list, and not when i was told by a ortho doc that couldnt do the op that i needed surgery, which was back in feb(it took the system 18 mths to diagnose me!!!!) as i understand if you,d been offered a admission date and you couldnt attend then you should have been offered another at a max of 28 days later?? maybe you should query this. gail
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  • Posted

    Hi Jenie,

    I have just read your story and you have my deepest sympathy. So much that I can relate to. But do you know what, you have done yourself a huge favour because you have clearly recorded everything including all the dates.

    Have you put in a formal complaint to the hospital? Is it an English hospital? Sorry, but my geography is awful smile smile

    There are all sorts of NHS time limits that come into play here. And you need to fight them using their own regulations as your weapon of choice. As you have found out, emotion gets you nowhere. Clearly you have been shunted from pillar to post, and days become weeks, become months.... In the meantime you are not getting any better. Watch the numbness. Like you I started out in a lot of pain, but as more and more numbness set in I became more worried. My operation is in 10 days, but I don't think it is going to do much for the numbness. That makes me really angry, because if they had got their finger out and done what they should have done sooner then maybe my prognosis would be better.

    Work is always a difficult issue, and I really hope that your employer gets behind you to support you in this. Most of my sick leave this year has been unpaid or else I've had to use up my annual leave, but hey, with surgery hanging over my head since May I haven't been able to go anywhere anyway!!!!

    Does your GP support you?

    There are some good people here, with lots of good advice, but most importantly of all, you'll find out that you are not the only one that this is happening to. Trying to get proper help from the NHS when they get it wrong time and time again is such a lonely road.

    Good luck

    TFU

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  • Posted

    Thanks to Dr. Spock, Gail and TFU.

    I have found this site really informative and it is good to hear from other people who are in the big NHS maze of distress just like me, as I don't know anyone personally who is going through this and I am tired of being pitied, felt sorry for or just blantly treated like a cripple who needs charity. Each night when I give up on sleeping I look through the posts and you have all inspired me not to give up!

    I am covered by the Stockport NHS Pennine Trust.

    In respect of my GP all I seem to get is \"oh well\", \"you know I really can't do anything further to help you, but here are some even stronger painkillers to turn you into a dribbling wreck\". My GP has tried her best I suppose with the tools that she has available and she hit the roof when I went back to work, but with a child and heavy committments I don't have much choice. Both my Consultant and GP are aware of my saddle numbness and the fact that I do not have any feeling on the odd time that I have had intercourse.

    My employer is dragging me over the coals, I have a capability hearing in two weeks time, they have refused to be flexible so to allow me to work, I have an office based job which involves a lot of finance and funding applications, so getting frequent breaks is difficult, because when your doing a job you love time flies by. I did negotiate reduced hours by using my annual leave to cover the shortfall, but as they refused to do a work station assessment until 18 November even though our occupation health unit requested it in October 06, the recent assessment flagged my desk as being inadequate and that they have failed to provide me with an appropriate chair, unfortunately though I have ended up with my lastest episode (as my GP calls it).

    I spoke to a chiropractor today and I am going to see him on Monday, he feels that surgery could have been avoided if I would have been assessed correctly. As my condition is starting to deteriorate I thought that by seeing the chiropractor then this may bide me some time. He was also concerned about the saddle numbness.

    I am off to see my local Councillors tomorrow in response to a recent article by one of them that states \"the NHS has never been so good\" armed with all the documentation I have received, and the large box of medication that I have accumilated. I am also preparing a letter to go to our caring Primeminister and will keep sending it until I get a reply. I have lodge a formal complaint with the Chief Exec of the Trust, but my only reponse so far has been a general letter that I had to collect from the Post Office because they had not paid the postage and it cost me £1.24 to find out that they have 25 working days to response to my complaint!

    I know it may not mean nothing but I am really sorry for all of you that are suffering as a result of the NHS shortfalls and if I could take your pain away I would.

    I am just thankful that my condition is treatable and that my daughter will not loose her mother. I never realised that by having a bad back my whole life would be turned upsidedown. Unlike my Nanny I will have plenty of years ahead of me, so I keep thinking of the future and that this is a temporary set back!

    Jenie :steam:

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  • Posted

    hi jenie

    i admire your determination, not to be a wet blanket but i have tried just about all the things you have or about to and its got me no-where, when i complained to the hospital c/exec via my am i got a reply apoligising for being mislead and told we cannot give an actual date as yet but your surgery will be around christmas, that was it! i,ve complained to so many depts im sick of the whole thing you get nothing but apologys and nothing else.my gp has been very good and has wrote again asking that my surgery be brought forward and she can do no more, but as you state what we have is not life threatening(terribly painful and debilitating though) and we will eventually get through it. hopefully for those who are now being diagnosed then the new waiting times being set up will help them. but in the mean time we have to suffer and continue to cost the country money via incapacity and other benefits, that we would not have needed if the treatment was available earlier. just doesnt make sense???? take care gail

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  • Posted

    Hi Jenie,

    Anger is your friend. You have every right to be angry, these people have failed you miserably, don't let them forget it. Wait to see what the first response is to your complaint. But don't expect much. You will need to be very well versed in NHS rules and regulations, because they will use those to support their position and will not admit where they have fallen short unless you point out what NHS rules and regulations they have broken. If you haven't already done so, I would suggest you start your research in good time so you can hit them with it when you get their first response. Try googling 'NHS time limits' 'NHS reasonable dates' 'NHS complaints procedures'. I always found the articles/targets prepared by individual NHS Trusts most useful. Do not threaten any legal action because as soon as you do, you move into a whole different league of trouble. If they get just a whiff of you planning that then your complaint ends, as will your care. At this stage you don't want to be left with just that avenue, because the reality is that it is very expensive and will get you nowhere. You have three years to commence legal proceedings, so you don't have to do anything for a good while yet. The case would in any case hinge on the clinical harm that you have suffered as a result of the delays. E.g if you ended up with a full blown Cauda Equina Syndrome crisis because they left operating too long. The truth is that until you get your op and can monitor your recovery, you won't know how you have been harmed by the delays. You may make a complete recovery, you may not, but if you don't and it is clear that your prognosis would have been better had you received surgery quicker, then at that point you will need to decide what to do.

    As my complaint has rumbled on I have found all sorts of ways they have broken their own rules. But of course all of this needs to run alongside what is really important which is you getting the care you need now. The best advice I can give you, is the advice a Canadian friend gave me. \"Be a squeaky wheel\".

    One word of warning though, if you turn down an offer of care, then they may try to use that against you. I understand why you want to defer treatment for now, but just be careful. Again check out what you can about 'Reasonable Dates' and 'Deferments'.

    Research, research, research is the key. It will be interesting to see what your talk to the local councillors and your letter to the PM bring forth? What about your local MP?

    Keep us posted,

    TFU

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  • Posted

    Hi Jennie,

    I totally sympathise with you, something should be done about the length of time we are all kept waiting.

    I am 40 and I've had back problems for 22 years but I hurt my back in Dec last year and spent New Years Eve in Hospital. Had a Sacral Epidural Injection done no improvement at all. Readmitted 15th Jan had Discectomy on 19th this also made no difference. Had another Sacral Epidual Injection and Nerve Root Block in May this year. Went to see my Consultant 9.11.07 for the 9th time this year and I'm now waiting for another operation Posterior Lumbar Interbody Fusion. But true to NHS Form there is a 4-5 month waiting list and this apparently is the Urgent List.

    I have not worked at all this year I am divorced with 2 teenagers, I have a good family who help me. But it's a struggle to live on £72 Incapacity Benefit. I'm still in constant pain and my left leg and foot are totally numb. I take 8 Tramadol, 1 Lansoprazole, 1 Amitryptin, 1 Fluoxetine, 2 Indometacin Tablets a day and I have Morphine Patches that I change weekly. When my kids go out to school/college I'll sit and have a coffee this is about 8.30am I fall into a deep comatozed sleep and my kids wake me up again at 4.00pm when they come back in. This is know life!

    We have to keep going on as the only thing keeping me going is the thought that I will hopefully within a couple of months be pain free.

    Take care,

    Angela

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  • Posted

    Thank you for all of your comments they have been very useful and have spurned me on further.

    The meeting with the Councillors went well, but I don't think that they can do much. They were appalled at my story and have agreed to write to the Trust, but they say that they do not have leverence with the Trust, but they can certainly fire off a number of letters on my behalf, they have suggested getting in touch with the local media to see if the coverage would force their hand. However, I am not so sure!

    I saw the chiropractor today and I feel like crying, he feels that if they had diagnosed me correctly then I could have been fixed without surgery. He is going to write to my consultant to agree some interim care and the good news is that I have developed some sensation in my left leg, and we talked at length about my condition, so now I feel more empowered. My GP had insisted on my going swimming a couple of times a week, and this I have been told today is not a good idea and if I want to exercise then I should carry on going for walks. He was concerned about the fact that I had displayed equina symptoms, (constant saddle numbness, loss of feeling in my leg and foot, loss of sexual sensation, the fact that my legs just give way when I am walking), and they had not acted.

    Well, I made a decision that I am to come off the meds as I need to be able to look after my 8 year old and want to stay focused. Why is it when I ask for help I just get stronger painkillers, do they think if I am semi-comatose on medication, I won't notice what is going on?

    When I can manage to sit long enough my next plan of action is to do as TFU has suggested and research, research, research! Knowledge is power!

    Take care everyone.

    Jenie

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  • Posted

    Hi Jenie

    I too had a wonderful Chiropractor and I would definately trust her advice the most. I too was told to walk, but preferably not on stairs, on the flat. I thought I had been soooo clever and everyday at work walked from the fifth floor to the ground floor, 105 steps in all, and I did this in laps twice a day for about 8 circuits. I'd walk down but then get the lift up and walk down again. But apparently this was the worse thing I could do! I find though that walking uphill hurts my foot more, I think because of the angle on the ground.

    As part of what has happened with my discs I ended up with a misaligned pelvis and one leg longer than the other. My posture is dreadful as well and this has affected my hip. No doubt all these things will need to be sorted out again in due course. The chiropractor put my leg back several times and straightened up my pelvis but they wouldn't stay put because of the underlying disc problem.

    It's good you have got some feeling back in your leg, is it back to normal though or just replaced with pain? I can relate to the Cauda Equina Syndrome symptoms, I have the same as you apart from the constant saddle numbness. I had that for a few days back in May but it went. I have had a bit of incontinence (both types lol) but I ignore that and it hasn't happened often. For me a CES crisis is my biggest worry. Can I ask with your foot...what is going on with your toes? Four of mine hurt all the time and no medication seems to stop that. It is as though the meds can't quite get to that part. And my toes are permanently scrunched up and sort of locked now. My big toe isn't the same as the others, in that it doesn't hurt but if I move it the sensation is really really weird. Not pain though. To me the movement is to be avoided at all costs, a bit like nails down a blackboard, it isn't the act in itself which is the problem, just the effect. It makes me feel physically sick. I read somewhere that the further south the pain/numbness problem the greater the compression.

    Good luck coming off the meds. But be careful, there will probably be side effects to the withdrawal. I hate the meds but can't imagine how I would battle on without them.

    Keep us posted...

    TFU

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  • Posted

    I too have developed problems with my right knee and hip, as well as the feeling of one leg being longer than the other, which is true apparently, due to posture changes to compensate for the changes caused by the prolapse. I thought I was going mad!

    Well, I received a telephone call today offering me a surgery date for 4 December, not sure how this has come about because they were supposed to booked up until February!!!

    But now I am starting to have doubts, I have been misdiagnosed twice and given two remedial actions by the Consultant, how can I trust them to get it right?

    The Chiropractor I saw said he would like a month with me to go through treatment to see if I respond, and the fact that I have developed some feeling in my leg has made me think, the saddlenumbness has settled from constant to flare ups. I have not suffered from incontinence as such (barr peeing when I sneeze). My toes felt like they were cramping and I had to buy bigger shoes to avoid aggrevating it, my foot though feels like a dead weight sometimes and the pins & neddles drives me nuts.

    Coming off my meds was a good idea at the time, but nobody warned me about the withdrawal, I thought I was dying over the weekend, I feel sick, dizzy, even more fatigued and very very emotional. The pain has kicked in big time, but I keep thinking if I learn to live with it at its worst then I can take anything else, I just want to curl up into a ball and hide under my duvet, but I keep telling myself that it can only get better!

    After all this battling I am so confused, I really don't want them to touch me, I keep getting the awful feeling that I got that cold back in October for a reason and I should not have the operation. How can I trust them?

    I have really had enough of it all, any suggestions?

    Jenie

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  • Posted

    Oh Jenie,

    I think you and I must be soul mates!! If you have been reading my posts generally you will see that I am really struggling with the whole trust issue too. Back in May I'd have absolutely leapt at the chance of an operation, crawled a mile over broken glass to get to it....but now, so much has happened, the whole hospital experience has gone so horribly wrong and like you I don't know what to do. I do know that I don't want to be like this any more. That is a good starting point. We are all products of our experiences and as a result of that I have no faith in the hospital, the staff and particularly the surgeon. And the statistics I've found on the internet don't help either, regarding likely prognosis, based on age, being female, length of time since symptoms first appeared etc. Do I want them to touch me, bearing in mind they have got everything wrong so far? No. Will I let them touch me? Right now I have no idea.

    I'm not surprised you got offered a surgery date in early December. As I have said previously, I think the NHS is having a bit of a clear out of the old cases ready for the new 'dry runs' for the 18 weeks to treatment legislation that is effective from the end of next year. That, plus people not wanting the December dates because of an operation ruining Christmas. I guess for most people who have waited absolutely ages, waiting another few weeks until January isn't going to hurt.

    I'm not surprised you had problems coming off the meds. I did too. In fact I lasted 27 hours. The scary thing s that we now need those just to feel anything even vaguely resembling normal!

    Only you can decide what to do about accepting the surgery date. When do you have to let them know by? For what it's worth, because they didn't give you three weeks notice in writing it isn't a 'reasonable date' unless you have already accepted verbally in which case it is.

    Best wishes

    TFU

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  • Posted

    hi all

    i think everyone is having doubts because of being left so long, and of course sometimes these disc problems do heal (albeit over a long time) i too was reconsidering back in jan this year i had hardley any pain , and thought ok its healed itself, but in feb it came back with a vengance (no idea why) and has been with me ever since ok some days are better than others but on the whole there is no way i could continue to live like this. only you can decide if surgery is for you, it is a tough decition to make, maybe make a list of the pros and cons see if that would help. i phoned the hospital yesterday to see if im on the computer for an admission date yet and was told there is nothing down for me but they give 2 wks notice , so im realy hoping to be in before xmas i dont even care if its the weekend before, ive already had two ruined christmases having to endure the pain so another wont make much difference!. good luck to you both . gail

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