Pain Concern
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Furious with the NHS

17 years ago I was told that I had 2 prolapsed discs. Over the last few years the pain has reached levels that I just couldn't handle, which they completely ignored. Finally I made the decision to use savings and take a loan to go private and get an operation that the NHS told they told me wouldn't help or I was too young for. The spires consultant took an mri and confirmed that I no longer had prolapsed discs, they were actually almost fully disintegrated with a 3rd disc starting to degrade.

NHS have now agreed that I do need additional pain relief until the discs go completely and my spine fuses (which is the operation that had been discussed to usually deal with the pain issues I was having) but not one apology for the past few years of extra pain while my spine has been completely unstable. They just don't seem to give a rats behind and think we're all exaggerating the amount we suffer.

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Yes I totally agree with you. I am nearly at the stage where I can't be bothered with the NHS unless I am dying! I went in to the surgery to try and get an appointment. Oh the nearest appointment is another branch 5 miles away - can you get there. Well as I don't have transport the answer is no. There were no doctors appointments available so reluctantly I agreed to a callback. 'Tomorrow' I enquired (this was last Wednesday). Oh no was the response - next Monday. If the doctor tells me to go in I will tell him to make me an appointment as I can't get one.

It's ridiculous these days isn't it? I have a borderline underactive thyroid which even though I have lots of adverse symptoms they won't treat unless it crosses some fine line. One of my sisters is having exactly the same problems and got so fed up the NHS she has gone private. I am amazed by what she has been told!

At least now you have got the right treatment but it's totally wrong of them to leave you in such pain for so long. x

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GPs are not employed by the NHS. the reason people can't get an appointment is that the current government expect GPs to do more and more work without necessarily paying them. Remember that they are human and can't just keep adding more and more work time to t week. A lot of people who complain about GPs wouldn't dream of taking on additional hours in an already busy week so why expect the GP to do so? This government has also reduced the number of nurses in hospital s by removing the training bursary and keeping wages down. More and more staff are becoming disillusioned about their role and consequently leave - all p of this governments plan to privatise.

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I am well aware of the above thank you. GP's work in the NHS.

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No, they don't. They are private businesses who contract with the NHS. The NHS will say to the GPs 'we want you to work extra hours to give people more choice about appointments (say). For this we will give you (an amount of money)'. It is up to the GP practice to decide whether to take them up on it but if they don't, they don't get the extra money. I used to be a GP practice manager and was involved in such decisions, until cauda equina, degenerative spine, arthritic hips and a stroke prevented me from working.

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Ok they don't work in the NHS then. Whatever you say.

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I to have 2 prolapsed discs, plus arthritis in my spine and degenerative desese of the spine, I have been in terrible pain for a number of years now, I have had all the pain medication you can mention, nothing helps and I have been told there is nothing else they can do to help me, sometimes it gets so bad that I can’t stand up straight, what are we supposed to do just go on with the pain and hope it will go away one day! I get so angry but it doesn’t help, so I hope they can do something for you please don’t get like me and put up with it

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Ask t be referred to a pain management clinic who can help you deal with the pain. Try to remember that consultants are not God - if your spine has degenerated badly there may well be nothing more a surgeon can do for your pain ,- but there are ways that you can help yourself.

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Hi I can't believe the doctors today they all seem to have this don't care attitude they sit in their surgery only half listening and can't wait to get you through the door is it the government and all the cuts that have been put on them. As far as I know they are still on a very good wage so why don't they care anymore

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Not making excuses for them but I reckon they are stressed out of their skins trying to achieve unattainable NHS targets. The suicide and alcohol abuse rate is highest in doctors and it won't be getting any better will it? x

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Yes I agree something needs to be done before it breaks down altogether

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GPs are expected to listen to the patient, examine them (after the patient has removed clothing to enable this examination), make a diagnosis, come up with the correct treatment plan and arrange it (either by printing out a prescription for the correct drug or making a referral to the correct department) all within the 10-12 minutes their contract allows. It's not always the GPs fault that they seem rushed .

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Totally agree. I’ve been in so much pain the last 4 years and no one really can figure it out. I just get shoved from pillar to post 😡😡

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Sad to say I have to agree with you, even in crisis situations the services often come across as failing in duty of care. For what reason I am not sure but it is we the patients from what ever walk of life end up suffering either from , lack of diagnosis, mistaken diagnosis or just on occassions poor treatment levels. My experience in respect of pain is much like your own but fortunately it is not severe pain like you just ongoing daily. Management for such things often consists of popping pills or being treated for anxiety I fear possibly to do with cost or manpower.

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Proper pain management is more likely to wean you off medication and give you strategies for managing your pain. Ask for a referral to a pain management clinic - I go to st Thomas in london and have had a neuromodulator inserted into my spine .

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I have heard about the treatment you have for your severe pain. I went to a pain managment clinic but they had to discharge me at first appointment as I had a broken shoulder, think it will be next year before i can get re referral for the chronic pain. But it has taken many years of pill popping and a new doctor to get this far. Hope your treatment works I heard it works for others so fingers crossed for you.

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Thank you. I hope you get there too

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No in pain clinics cares. The won’t ray or do mri. Just a class to “manage the pain”. The latest statement they have is that “nerves don’t cause pain but it’s the brain that says it’s pain- train your brain.” What a load or garbage. Until these people know what it’s like personally they will never understand how sole destroying it is.

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The NHS are often immoral! Surgeons topping up their riches through the NHS, because there aren't enough private patients for them, they are allowing people to become disabled, they are narcissistic sociopaths. Vile the lot of them.

Go to a solicitor, they only get away with ruining people's lives if people allow them to. The decision makes in the NHS want stringing up by their golf clubs.

I'm in the same boat as you, so much degeneration now, not worth operating on apparently...just a few years ago I wasn't so bad. They look at my scans and tell me there's nothing to see. My report which I requested says different. The NHS tell surgeons, radiographers etc to tell people there's nothing to see, nothing to operate on. So they all lie, skew results, they need punishing, I hope to god they all rot in hell.

I genuinely hate them for what they have done to me, what they do to everyone who is not rich enough to pay them what they want. My pain clinic just dropped me, behind my back. Considering seeing a solicitor now, just had enough of it. Like it isn't hard enough having this awful affliction, they add insult to injury.

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What you describe is not the whole of the NHS in my experience. I have had good experiences with a kidney tumour removal, getting neurosurgery on my c-spine to relieve nerve pain and in planning an op to reconstruct my left Achilles Tendon. Even in rural Lincolnshire we can see an appropriate member of staff at our local GP surgery on the day we make contact.

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Yes I have had good treatment from the NHS too. x

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I've had great service from the NHS when I had cancer. Unfortunately they seem to have decided that people with chronic pain are just time wasters to them.

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That comment is BANG ON! chronic pain or long term pain suffers just go through the cracks and no one seems to care unless you show them some money lol

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I am sure there are many of us who can empathize with your post. I have an autoimmune disease that took 10 years to get a diagnosis and even now at the surgery I am often fobbed off when I have questions. Sometimes all we need is for someone to say sorry. I have copied a link for NHS complaints if you want to have a look.

nhs.uk/using-the-nhs/about-...

there is also PALS

nhs.uk/common-health-questi... who may be able to help you claim back your expenses for seeing the specialist.

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I'm with butterflyEi on this one for the majority of time. N.H.S is a bit post code lottery it seems. I can get a telephone GP ring back or appointment most days I call.

The nearest of surgeries is an issue as so many smaller surgeries are being shut to make 'super clinics'. All in all N.HS. does punch above it's weight given economic issues. If my local hospital cannot will not deal with a concern there is always asking GP surgery for a second specialist opinion elsewhere.

I live in a large conurbation so other specialist hospitals are available. Quite frankly we need to work with our GP as much as possible. They are as frustrated as we most of the time. It is about time as well as budgets frequently. Since all of us on this site can clearly access the internet, we can help ourselves to medical information much more.

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I'm sorry to hear about the pain you are in and having 4 prolapsed discs myself I can empathise entirely.

I have had mixed experiences with the NHS but the majority have actually been positive including the 4 operations I have had. The most recent op was Spinal Cord Stimulation, excellent treatment and care during my 10 day hospital stay.

My worst experience was turning up for my SCS op back in Feb and then during the pre-op chat with the surgeon, it became apparent they had me down for the wrong type of SCS unit, the non-MRI compatible one even though it had been agreed I had to have the unit that would allow further MRIs.

In the end my op was postponed and the 2 mths quoted for the rescheduled op turned out to be 6 mths. During the time, my level of pain was such that I was put back on Fentanyl patches backed up with other oral meds.

However, my attitude is extremely phlegmatic. Mistakes are made sadly and even though the mistake led to a further 6 mths of extremely severe pain, it never crossed my mind to seek legal advice. Maybe that is due to the fact that I have a number of close family and friends who work within the NHS and I am very much aware of the pressure and strain the NHS is under.

I do hope you receive pain relief until your operation. Have they mentioned injections to you? I have received a number of injections, caudal epidurals, facet joint injections and nerve root block. I have found the nerve root block injections to be most beneficial and they were the main reason I was able to stay working as long as I did.

Take care and keep smiling, Ben.

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I am sorry you had to go to hell and back to find out what was going on. You got the stupid doctors I had the ones I had to diagnose my self with MS I just can’t believe these idiots get to practice medicine. I hope you get to have your synergy and am out of pain.

Sandra

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How awful.

I was diagnosed with 2 prolapse discs in dec last year and osteopenia with abnormal bone growth with onset of osteoarthritis.

So 12 months on and I am no further forward, infact I'm in worse pain now than ever, physio was a no no due to pain , gabapentin...wont even mention that , now after 6 months of debating and seeing a new dr at the surgery I have an appt with pain management.. 23 Nov??

Dont get me wrong, I have had some great care with the NHS , but the strain they are under is awful, my poor aunt has been left for 6 weeks in hospital, with them doing very little until my daughter kicked up a stink. We now know she has dementia, we could have diagnosed that ages ago , I found her lying in a soaked bed Monday morning at hospital with no underwear on !! .all I got was , oh she keeps taking them off?? And ... if they stopped to check her instead of chatting about what shift they are on / doing then I would have no need to have complained.

Given up on my ever getting better, my home is now full of medical aids to help me around , my life has become very restricted and depressing..

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GPs are not employed by the NHS. they are private businesses who contract with the NHS to provide a particular service to patients. I had the same condition as you. I was going to have to wait a long time to see anybody in the NHS (but that did not mean the NHS were rubbish. Rather it meant that the hospital was so good that everybody wanted to go there). I decided to go to the Nuffield for a private consultation. It cost me £150 eight years ago. The consultant there transferred me to the NHS list. Result! I had a decompression which took away a lot of the pain . I later had a fusion which was managed brilliantly by the NHS. I was referred to a pain management clinic which was also brilliant, and had an implant put Into my spine. Anyway, keep In mind that GPs are separate to the NHS!

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Fully agree that the GP workload is crazy and they aren't directly employed by the NHS, but the issue I had was with the consultant at the NHS pain clinic who was working from a 6 year old mri and failing to listen to the fact that my pain was increasing, I had developed numbness in my leg and nothing I was trying myself (I provided a list of 35 treatments I had tried to help me increase activity and decrease pain without invasive or drug related solutions) or that they were trying (several drug reviews and types of injection. If a new mri had been taken earlier the issue would have been detected earlier and permitted a spinal fusion rather than leaving me with a very unstable spine and horrendous pain over 4 years as the discs slowly disintegrated.

I'm glad that you received such great treatment in London. I'm not saying that the whole of the NHS is this standard, I'm just saying that the treatment I received in this instance was a misdiagnosed error that resulted in me suffering considerably.

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