NHS is Unbelievable!

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Hi everyone, Daisymoo and Trulyfedup.

To cut a long story short i had two microdiscectomies in 2008,(at private hosp under nhs) and ongoing problems with sciatica down my right leg, my consultant left the nhs so now I have been refered to another nhs hospital. I had an epidural spinal injection June 2010 unsuccessful, at another private hosp (due to no NHS spinal service at my local hosp)

I get to the appointment this week and when I get to this hospital in London, my consultant has hardly any info about my medical history, no Mri Scan details sent to him I am so fed up! I have now contacted my original local hosp and asked them to look into why my info has not been sent to new hospital, i have been mucked about for 6 years, delays of months waiting in pain for appointments and now looks like scar tissue is cause of ongoing pain, treatment options look like, op to clear up scar tissue, a nerve block or pain management.

On more than one occasion I have had to have help from Pals nhs to get some help waiting too long for mri and treatment and appointments etc.

Now I am forced to wait another two months (it would have been 3 had I not persisted in persuading the receptionist saying i need to be seen sooner and due to local hosp not passing notes to new doc at new hosp.

What is the matter with this country! I haven't been able to work for 2 years, the government complains people are on incapacity benefits and try to get them off, I want to work , I don't want to be stuck at home with ongoing leg pain, I have had physio, osteo, tens, exercise on prescription at my request through my gp.

I have contacted my local hospital and asked them to get my records, mri and notes sent urgently to this new hospital so that on my next appointment I can hopefully get some help and get my life back, I know there are no guarantees in life and that back pain happens to many people.

I hope that one day this country sorts out the way back sufferers are treated and takes them seriously, just reading most of the posts of others on here, indicate that people are waiting too long, not being listened to and being fobbed off and when i mention minimally invasive laser spinal surgery to doctors why are they so dismissive, maybe it carries risks but so does all surgery/treatments. Years ago laser eye surgery was unheard of but now it is available (although I guess it may carry risks also).

Anyway I will not give up!!! I will keep on and on till I get the help I need.

Trulyfed up how are you and Daisymoo?

Take care everyone ever hopeful, MB calibra (i refuse to give up)!!

(the Hymn Fight The Good Fight comes to mind) :0)

xxx

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5 Replies

  • Posted

    Hi mb,

    Sorry to hear about this, but not altogether surprised. What a complete waste of your time and now you have to wait again for another few months. As I said before it is an endless cycle of......waiting for appointment/thinking about what you want to say in appointment for weeks in advance/appointment/mentally going over appointment/waiting for next appointment. And it is absolutely maddening. Personally I think you shouldn't have to wait two months. They could fit you in if they really wanted to, it is called a 'forced booking'. But anyway, it does seem to me that when you have been kicking around in the system for a few years as we have then they pretty much lose interest, they are just going through the motions.

    I really hoped that you would get somewhere with the laser surgery and I too would be interested in that. I have an appointment at the NHNN in Queen Square next week and I shall ask about this as a way of reducing excessive scar tissue. It has been suggested that I have a Spinal Cord Stimulator put in to help with my leg symptoms from the excessive scar tissue around the S1 nerve rootlet and I think that this is what we are going to be discussing. The only other thing on the table is weekly injections of Ketamine, but I'm not keen because it affects your cognitive thinking and memory. I am having a Sacral Cord Stimulator put in next month to help with the Cauda Equina Syndrome symptoms, but how the two will interact together I have no idea. To be honest I think that I would rather not know, because then I won't have to think about it.

    I agree with you that you could get back to work if someone could just get you fixed. It is nearly two years ago since I had to pack up work. I did go back to work for 8 months after the original op/2nd emergency op, but eventually had to give up because of the meds and the endless hospital appointments and because I just generally wasn't well. I would love to go back to work, I would love to get my life back. I hate being off work and living on ESA after I had a really good job in the City is a real test. God knows the country needs the tax I could be paying. How many others are long term sick but needn't be if they could just get the treatment they need???

    I just hope you get some answers soon. Even if they just had a plan for you, it would help you to have something to focus on. Being a Consultant is an art. If I could have a fiver for every appointment I have had where I have come out and thought \"I'm sure something meaningful must have just happened (because I was in there for an hour) but I can't for the life of me think what!!!!\" :? :? :?

    I shall let you know if I find out anything useful at my appointment next week. In the meantime keep you chin up chuck!!

    Best wishes

    TFU

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  • Posted

    Hi Everyone, Trulyfedup,

    Thanks for your kind reply.

    Let us know how you get on next week at your appointment. I think that is such a shame you haven't been able to work, it must have been a shock to lose a good job in the city. Esa is only basic and i'm on incapacity it helps but it is such a struggle when you have lost your wage especially with neverending bills.

    The consultant wrote to my GP informing her what happened with no Mri or notes being received and kindly sent me a copy last week.

    The doc at the hospital thinks that there is scar tissue around l5/s1 level as well as a tear at l4/l5 disc which i knew about. Luckily at that appointment i had a typed copy of my mri which i gave to the consultant.

    He says in the letter to myself and gp that if there is no compression and just scarring of the nerve root then it may not respond to surgical intervention but it could get worse. It seems that if there is compression they can do an op.

    Anyway it is awful waiting again like you, but I just have I to keep on trying until something can be done.

    I will be back at the hospital end of October and I will let you and everyone know on here what they are going to do for me.

    Trulyfedup I have looked into if there was any home work on my pc I could do but unfortunately a lot of home jobs seem to be scams or commission only on the net, just wondered if you like me had looked into anything like that?

    I couldn't sit at the computer long with the leg pain so I got one one of those beanbag computer trays so I could do my laptop lying down or sitting in bed, that has been great.

    Mb calibra xxx

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  • Posted

    Hi, i feel for you. been thru the same myself.

    After my first consultation and MRI i was told i had a herniated disc and referred to a spinal surgeon only to wait 3 1/2 yrs for an apointment, when i travelled the 50 miles for the first appointment i was told the MRI was lost but it didnt matter cos it was out of date. waited 6 mts for new MRI to be told i now had 2 herniated discs and congenital spenial stenosis (i was approx 32YO then) another 4 yrs, physio, accupuncture, spinologist, discectomy/laminectomy, cortisone injections, spinal fusion of L4/L5 (should have been L5/S1 but when opened up had sacrilisation of L5/S1 so he did the next level up. and 2 courses of Nerve root blocking. As of now i am in more pain now than when i started and taking loads of meds. 3 x 20mg oxycontin morn and night, 4 x 5mg oxynorm 4 times a day, 150mg Lyrica morn and night, 15mg cipralex daily for the depression brought on by the whole situation as well as temazepam to get some sleep at night.

    As far as my surgeon is concerned now the nerves are damaged and pain management is my only way forward.

    Only for my 3 gorgeous daughters and beautiful (patience running out) wife i dont think id be here now.

    So keep strong and dont be thinking your going thru this alone, the NHS might not give a damn but we all do.

    Talking about the NHS, do they think were all pretending to be sore just to get off work and keep us waiting months or in some cases years and we'll get fed up and stop acting. Thats the way i used te feel when i was phoning in tears to see if they could move me forward a couple of years.

    Regards,

    Glynn

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  • Posted

    Don't even get me started on the NHS!!!!!!

    I thought that moving to a different area which has 3 hospitals within a 2 mile radius (as crow flies) would make a difference...... Boy was I wrong!!!!

    New GP practise decided first to send my URGENT referral to one hospital, who decided that I would be better off at one of the others, so sent my referral over to them by fax. Never arrived at the other hospital & it was only after I tried chasing it up that I was told the truth!

    5 further URGENT referral letters were faxed over to the CORRECT hospital (both hospitals concerned have ortho clinics), and an URGENT appointment was made for me for 3 months time!!!!

    IN those 3 months I have gone from being able to walk properly and do most things albeit in pain, to having to walk with a stick (in agony) and when outdoors, use a wheelchair to get around (can mange 5 steps without stopping with the stick).

    The Consultant I was assigned to, basically accused me of FAKING it because I didn't scream when he examined me & also tried giving me a lecture over my records stating that I used to smoke cannabis when I was a teenager (20 years ago!!!!). According to him because I used to smoke cannabis, no medication will work with me! He say he was going to make me a MRI scan appointment as nobody has scanned my lower spine since all the problems started. Got to wait at least 12 weeks for that according to him. The funniest thing about it is that I have BACK problems, yet the consultant is a LEG CONSULTANT (his own words to me were \"I can cure leg pain, but no good at curing back pain\"wink.

    Worst part of it all was that they made me 2 appointments (one for Friday & one for Monday), yet the Monday appointment they cancelled was with THE back specialist!!!

    No doctor will prescribe me anything stronger than 2 x 60mg MST tablets per 24 hours or Naproxen/Gabapentin/Paraceatamol/Pregablin/etc which have no effect other than cause severe constipation. Clinical trials and other people with identical problems to myself have mentioned that hydromorphone (lower dosage, cheaper, less side effects, etc) is the way to go now if Morphine isn't working yet none of the NHS staff will listen to me (even though they ask me what I want them to do, yet say NO to everything I suggest!). Yet they want to treat me for DEPRESSION again!!! It's the damn pain that is making me down, nothing else!!!!!!

    To have a wheelchair referral by my GP was a major battle as well, due to the fact that none of the GP's in the surgery had any idea of what they had to do & kept stating that I had to fill it in myself and send it back to the DSC even though it states in bold letters at top \"To be filled in by GP, Occupational Health Therapist or Physiotherapist\". To get this far I had to get PALS involved numerous times, and I have now put in a formal complaint to the PCT that covers the surgery.

    Luckily, the DSC Wheelchair Unit have been brilliant and I should receive a chair in the next few weeks (prob New Year), so I don't have to rent one from the Red Cross any more.

    I have also been told that pain management is the way forward for me rather than try to find out what is causing the problem in the first place, but I don't want to be having nerve block injections every few months for the rest of my life, I want to be able to walk properly again and a resolution to what is causing the problem in the first place! I am 36, not 66......

    DLA have also told me that I cannot claim until a full diagnosis has been given by a consultant!!!! So I am stuck in a wheelchair, virtually unable to do anything, yet cannot get any help towards mobility or aids for the house and my wife to help.

    Council feel I am bad enough to get a Blue Badge, and Disablement Services feel I am ill enough to require a wheelchair, but nobody else seems to give a monkeys in the NHS!!!

    I swear if I felt I wouldn't make myself physically worse, I would have p

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