I cannot believe that I have put up with this for the last 8 years, since my really nice and on-the-ball GP left the practice. Yesterday I went to the appointment with the GP, Iron Knickers, that I had had to book 3 weeks ago after waiting online at patient.emissaccess (online booking) for her next tranche to be released. I booked it then so that the letter from my Neuro Rehab consultant, who would be writing to her to request my having B12 injections once a week for 3 weeks, would have been processed and the jab would be ready to go.
Duh. Rather optimistic. The letter had not appeared on her screen, she doesn't do jabs and the 'therapy room' where the injections are given are not part of the surgery and have a separate phone number. There isn't even a facility to book an appointment at the reception desk which is right beside the 'therapy room' door. But all that's small beef.
I took my BH along with me. At the time I wasn't quite sure of why I did so, to be honest. It felt a bit child-like; I just supposed I needed support. So, girded with the forum’s member’s suggestion about how GPs give needles to drug addicts and why not me (for self-injecting B12) and a comprehensive list of my symptoms as they cross over with B12, ME, Fibro and thyroid, all beautifully typed with the most relevant bits highlighted in a carefully chosen, delicate shade of non-aggressive pink, postscripted with a directly lifted quote from the BNF about the alternate day injecting protocol for neurological symptoms of B12 deficiency, I sat in the waiting room for the obligatory 40 minutes minimum and realized, to my surprise, that I had a mass of fretful butterflies battering at my guts to get out. I felt farty, sweaty-palmed, needing a wee but too fretful to go in case I missed her call and wasted 5 minutes of her precious, already constrained time.
Just thinking about it has sent me to the loo for the second time this morning. (That and the Movicol, I guess. And the bathroom is a bit of a trial – we had a water leak in the loo and lifted the carpet [I have now learned never, ever to fit carpet in a bathroom or a loo wherein lives a man] because it hadn’t dried after a couple of days. Someone, at some time in the past, has scrubbed those floorboards with that urine remover you can smell masking the pee in the worst of care homes. Like sweet, rotten apples. But I digress.)
I even said to the BH, “I feel anxious,” at which he was really surprised. Until after the appointment.
Iron Knickers eventually appeared for 0.3 seconds peering round the corner of the wall, beaming grin on her face as she called my name (she now uses my surname after I responded to her using my Christian name with the use of hers) before disappearing back to her room. We went in and it was like walking into a kind of toxic time bomb. You know that feeling when you walk into a room and the air is crackling with some kind of nervy energy? My own resolve freeze-dried. Smiling brightly, radiating a kind of efficient, no-nonsense vitality, she dashed off something on the screen then turned to face me with. “How can I help you?”
I started off about how I still felt nauseated after the GTN up the bum fiasco, describing how I had stopped taking thyroid meds for the last two days because of my BP shooting up since the event and my pulse rate remaining high after rocketing, and all she must have heard was, ’reaction’. She assured me that the abreaction had been noted on my file. I reiterated that, some eleven days later I was still feeling nauseated and a little vertiginous but I reckon she only heard ‘bad reaction’; she just did ‘puzzled face’, explaining that the response would have been instantaneous and would not linger. It was not until later in the day that I realised that she never questioned the fact that I have felt sick and swimmy-headed for the last 11 days.
It was when she asked me about how my BP and pulse rate were now and I had repeated that they had begun to calm after I had stopped the thyroxine for two days that she gasped, wide-eyed, and said, “What? You’ve stopped taking thyroxine?” I was really taken aback. I explained that T4 has a half-life of around a week even though T3’s is around 8 hours. Virtually bouncing in her chair she said, “But you’ve stopped taking thyroxine?” … yes, but only for a couple of days … “But you can’t stop taking thyroxine, it’s really dangerous …” no, i still have T4 in my system, i’m starting again today or tomorrow bec… “But you mustn’t stop the thyroxine…” … i’m not, i’ve jus… “Because it can be really dangerous …” I managed to calm her down a bit by assuring her that yes, I would re-start the bl***y thyroxine and in hindsight it was her perception that she had talked me into taking thyroxine again that enabled her to sit back in her chair and breathe again. Until I mentioned the words, “self-inject”. Now that, under any other circumstances, would have been funny.
I thought I was going to have to perform CPR on her as my husband ran for help. She sat bolt upright as though jolted by an electric charge up her derrière, hair flying, eyes bugging-out from her head with utter terror. She actually drew breath with a laboured “huhh, huhh!” We discussed the protocol of alternate day injecting. I say discussed, but what I actually mean is that she word-bombed me. About how ‘the alternate day protocol is for people who are virtually dying from neurological disorders, that the consultant, according to me because she hadn’t got his letter, was advocating once a month, that I would not know of the effect for some time because it has to build up, that I was not bad enough for more than that’… To sit in the teeth of her gale of cataclysmic warnings was enervating. She simply could not receive. I tried, with increasing weakness, to explain that by the time a patient was that ill the nerve damage would be irreversible, I tried to tell her that B12 isn’t toxic, it’s water soluble, that the quote from the BNF does not specify the degree of neurological impairment. Nothing I said penetrated. Her agenda was iron-clad and impenetrable. Foolishly I even tried to argue for the subcutaneous injections rather than intramuscular and her look of astonishment would have been comical had I not been so damn tired. She actually told me she didn’t think an injection into fat would work, that the B12 wouldn’t get into my bloodstream! I had to remind her that insulin is injected subcutaneously and yet she still looked incredulous. I didn’t bother to ask for needles.
It wasn’t until I left – with nothing more than the phone number for the therapy room nurses that I realised that a visit to my GP has become traumatic – probably for her as much as for me. My husband even asked her if she gets many patients like me, to which she replied, “Oh thank God no!” as she bowed over her desk with a groan.
I’m so tired.
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Schenks
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just goes to show that there are some '' automated robotic plebs -- without batteries attached -- '' out there that wouldn't know where a clue came from if it hit them on the back of the head like a baseball bat ....... and they actually think that they are the intelligent ones !!!!! god help the rest of her patients --- they will certainly need it !!!!!! ..... alan x
It's enough to make you cry, isn't it. I admire your calm. I would have been shouting the odds after about five minutes of that! She really would have had a heart attack had it been me - and I'm not sure I would have bothered to revive her!
I think, to be honest, that I feel as though I've been buried alive. Right now i'm so weary with it all, so ... well, brutalised, that I hadn't realised how abusive this woman has been. How could I have missed it, i don't know, other than the constant fight has made me a bit blind to what's right in front of my nose. I wish I'd've taken you with me.
You deserve better Why oh why are the Guidelines ignored when it suits as in the case of B12 and yet rigidly adhered to when it suits - in the case of Thyroid.
The medical profession is full of very bright people - but devoid of common sense. It must be all to do with the fact that a Vitamin cannot be patented by Big Pharma and then purchased by the NHS for millions.
If they only knew how much money could be saved if EVERYONE was tested for B12 - with the bottom of the range at 500 - and then treat the symptoms with injections for pence.
Do hope you will soon feel better when you can self inject as and when - at your convenience.
Schenks If you ever write a book will you please let me know. Your posts are so beautifully descriptive and funny yet get across the hopelessness that you face with this moronic individual who somehow managed to graduate from med school.
It must have taken a lot of inner strength to fight your corner to that extent and I'm sorry that the outcome was so dreadfully poor.
There are four doctors at my surgery, none of whom I find to be very helpful, all I find to be hopeless and are happy to deny you referrals and treatment so keeping you ill. I don't have the will/strength/nerve to do battle.
I have in the last few months done two self referrals to consultants (not thyroid related). The latest one is next week. I did get an NHS referral for this one and the wait is 6 months minimum, the GP knows I have been very poorly this year, still am, but says it's not urgent. My NHS referral is sufficient for the private appointment and I have a copy of it to take with me. Oh, the mistakes on that form regarding medical history and adverse reactions! Apparently I have had an adverse reaction to the tetanus vaccine, yet in the real world I've never had a tetanus jab. I also apparently have glaucoma! I have been advised by a few local people not to mention it at the surgery as it will open a can of worms and some patients have been told to 'find another GP as you're no longer welcome at this surgery' for lesser crimes
I shall keep quiet, use them for what I need and do what I can to help myself.
SeasideSusie How does one self-refer to a consultant? Is this under the auspices of the NHS or private? I thought it was a cast-iron rule that all referrals to consultants, either NHS or private, have to be begged for from GPs (who then smirk or glower at you and tell you that no referral is needed because you are perfectly well - here, have an anti-depressant and don't darken my door again.)
humanbean It's private. I've had my share of what you describe. In fact, I think I read on the lung forum I visit that if you ask for a referral from your GP then you can't be refused, yet I was refused a NHS referral to a lung consultant when I asked almost 18 months ago.
My first one was to a breast specialist. I had seen one of the useless GPs who thought ibuprofen was a good idea for weeks of breast discomfort, a very long history of multiple cysts and aspirations, plus my concern after my husband's long battle with cancer. I wasn't in a good place (which was obvious when I was with the GP) so googled who the ones for my region are, found the one who was the lead consultant at the NHS breast centre, found he did private consultations through Spire and found his secretary's number. I explained to her what happened at my GP appointment, she was extremely sympathetic and I got an appointment the same day at his Spire consulting rooms. When I asked if they needed a referral from my GP she just said no, don't bother, it will be fine. He then referred me for an ultrasound with a consultant radiologist which was private but took place at the NHS hospital he works from.
This second one I had already got a NHS referral to a lung consultant (but the letter came back with informtion that I was on the waiting list to see a member of the thoracic team) but after the fiasco that was my appointment with my GP a couple of weeks ago I found out the same consultant (highly recommended by a friend so that was good!) did private appointments at the Spire. I rang the Spire, they arranged an appointment for me and when I told them I had an NHS referral and did they want another one to see him privately they said no, the NHS one would suffice.
So, it seems to depend on the consultant. Some you can go direct to and not bother with your GP, you'd just have to ask. Some would want a referral.
It's not cheap, we shouldn't have to do it. I don't consider it queue jumping, I consider it taking control of my health because my tossers of GPs don't actually care, they just want to save money.
I saw a consultant privately last year that I had investigated in advance and had to ask my GP for a referral. He had good reviews with people saying how he had saved their lives and their guts/bowels etc (He was a gastrointestinal consultant.)
Then he met me. The common factor in all the crap appointments I have with doctors is me, so obviously it must be my fault. But this consultant was not helpful, and he didn't even bother to write to me after I saw him, he only wrote to my GP. It was my GP who gave me a copy of his letter.
He said I was demanding! I paid this guy, and I paid him for a reason. I wanted to get something out of the appointment. He would probably have preferred me to sit there and just accept whatever pearls of wisdom he felt like dropping at my feet. But because I stated what I was hoping to get out of the appointment and what treatment I was interested in trying, I was classed as demanding. But if I'm paying the damn bill what else should I be doing?
The breast consultant I saw was very calm and reassuring, quite laid back really. The radiologist was absolutely lovely, charming and very much a gentleman. I did have to ring and ask for a follow up letter to be sent to me from the consultant (they said they'd already sent it, somehow two got lost in the post!!) and I also had to ask for the radiologist's report. I was a bit miffed they didn't come automatically, but then again I didn't request this at my appointment, lesson learnt! I wanted them for my GP's records so if anything crops up in the future the evidence is there!
The lung consultant I am seeing has been thoroughly described to me by my friend who has been seeing him for a few years. Her first appointment was a private one, and he said he would transfer her to his NHS list after that. She says he is caring and kind, explains everything very thoroughly and draws pictures, and doesn't rush you. Her last NHS appointment was 5.20pm at the local cottage hospital where he does clinics. At 7pm the cleaner was cleaning round them! The nurse who did my spirometry yesterday, when I told her who I was seeing next week, said he is very good.
Here's the opposite:
About 2 years ago I paid for my son to see a neurologist. He'd been told by his GP that 'I don't think it's a brain tumour', but the wait to see the neurologist on the NHS was 9 months. He was already in a bad emotional state (bitch wife had done the dirty on him and b*ggered off, best thing she ever did!) and he was talking about it would be his last Christmas . I paid for him to see this neurologist at the Spire, also paid for an MRI scan as there was another 5 month wait for that. Well, what a miserable bar steward he turned out to be. I believe that respect should come from both sides but it was certainly lacking from this individual. After the MRI scan he was transferred back to the NHS and his care continued from there (it wasn't a brain tumour).
So it seems, however much research you do, it's the luck of the draw.
Schenks He is doing well, than you for asking . He had surgery three weeks ago for something else (a two year wait for that and in some pain for a long while) and has recovered well from that. Back on light work (he is self employed as a kitchen/bathroom fitter, ceramic tiler, general small maintenance/handyman) and will be taking on heavier work come September.
The brain thing was further investigated with a Lumbar puncture last year, found to have high pressure but not high enough for a risky shunt operation (thank goodness). He doesn't appear to have been discharged but he's heard nothing for months. Things have settled down, he's off the pain killers and doing OK.
In hindsight we think it may have all been caused when he had the emotional upset over his wife. He started suffering blackouts (eventually put down to stress), he blacked out coming down the stairs, knocked himself unconscious for 8 minutes and never got checked out at the time. It could have been concussion, or the massive smack on the head he suffered caused some temporary damage. We'll never know but everything seems fine now
Susie, I'm so glad he's on the mend. Please God he will find his ex has done him a favour soon. I'm so dismayed to read of his suffering and the appalling treatment he's experienced. The though of it makes me so wearied I want to sleep.
Ah, dear Schenks, yes he's well and truly woken up to how bitch wife treated him and realised she did actually do him a massive favour. She took the two younger children with her and shacked up with New Man (heaven help him!). Within 3 months his daughter (the youngest who was 12 at the time) asked to come back and live with Daddy and she's been with him ever since. They are very happy and she's growing up to be a much nicer young person than she would have been if she stayed with her mom.
Almost two years now, he's expecting a request for a divorce soon as she won't have to admit adultery then, just go for living apart for two years, or whatever it is. He says she'll have to pay, he doesn't have any money for that, he paid off loads of debt she left him.
Did you get to look at the referral letter to the consultant from your GP, Beans? And did you commit the cardinal sin of showing that you knew something of his subject? Might you have been too up-to-date and relevant, thereby shaking his perch?
And by the way, i had an exactly similar experience with an NHS endo swamp rat, who looked good on the recommendations - on TUK, as it happened, but in reality was as flexible and predictable as a tree.
I can't remember if I saw the referral letter to be honest. My memory is getting worse by the day.
I did show I knew something about his subject. I was asking for a treatment that is only available from some CCGs but not mine. Two doctors in my surgery had never even heard of it and the doctor who referred me to the private guy wasn't prepared to refer me out of area.
There is a technique which allows doctors to see inside the intestines involving the patient swallowing a large capsule with a miniature camera in it. You have to wear a gadget around your waist for the camera to transmit images to, and then the images can be uploaded onto a computer and studied. It's not actually that new-fangled a procedure, it's been around for several years but my CCG doesn't fund it.
It was risky, in the sense that after about 8 hours or so the battery in the capsule dies, so the bit I wanted to see was probably too far on in my gut to even appear on the pictures.
I would have been risking about £1500 if I'd paid for it privately. In the end it was too much to risk. I probably would have learned nothing.
How fascinating - there is an argument currently about prescribing a pill for people who won't use condoms, in order to protect them against HIV from unprotected sex, but a very few of us are refused diagnostic procedures to pinpoint exactly what we might be suffering from already. Did you know that around 65-85 percent of NHS expenditure in A&E is on binge drinking-related problems? It's a mad world.
I didn't know that. I was under the impression that drinking in particular (I don't know about drug taking) was reducing amongst the young. So I'm surprised!
News to me. But it's not only the drinkers but the people who get into fights and their victims, drunken pedestrians, drivers ... there is a lot of collateral damage.
Hello again, Susie of the sea. I'm sorry to take so long to reply to you properly, but that appointment had absolutely knocked me out. I could not even think about sitting in front of the computer - every time I wanted to my body just went 'flump', and I kind-of caved-in. It was because, I realise in hindsight, that the experience was actually traumatic. I had known in advance how intractable she's be, but I was not prepared for her absolutely manic defence of her entrenchment. It was dreadful and was the final straw.
I am going to start my B12 injections and after the third one onthe third month, change surgeries (can't bear the thought of going to a new tw*t - sorry, GP, and having to explain form the off about the trial of B12 and then getting an appointment with their nurse ... and on and on and on.
But I tell you what. Your suggestion to write a book is the latest in a few, so ... I've started to write a book! I have no idea what I would do with it, but it's just falling onto the page and as it does so I realise that I have been harrassed and mistreated and bullied by effing doctors all my life. And it stops here.
Your experiences are disgusting. In fact, all of our experiences amount to malpractice, I am in no doubt. Doctors are supposed to do their best for patients, not see them as at best recalcitrant idiots who need to be controlled or at worst, disposable income routes.
I applaud your taking so active a route whilst keeping the bar-stewards as sweet as you need to. I hope that, in some way, you might find another surgery not staffed by Nazis. Disgusting. And I wish you all the very best that the Universe can provide in your fight to health,
Oooh, a book in the offing I am so looking forward to reading it. Please do get it all down. Someone on another forum (can't remember where) self published a book through Amazon, an account of her new life when she moved to another country. Light hearted, interesting and a lovely read. Only thing was the proof reader didn't do the best job!
Unfortunately I can't change surgeries, there isn't another one. I live in a quite rural area, the next one is 10 miles away, I don't have a car and public transport isn't very good. I am stuck. I have renamed the surgery The Stables as it is full of asses (did I misspell that )
I picked up the referral letter (which is now a form, push a button and the computer fills it in I think, apart from the blurb the doctor writes about thanking them for seeing this little old lady) that the GP did for the NHS referral which I am taking to the private appointment with the lung consultant next week. It says I had an adverse reaction to tetanus vaccine - well, no actually as I've never had a tetanus jab in my life. It says I have glaucoma - no I don't but a cousin who lives London way does. It says onset of hypothyroidism 1997, well that would be 1975 actually! Goodness knows what else is on my records, I'm too frightened to ask for a copy, I might just explode. I'll let sleeping dogs lie for now. My cousin (lives near, same surgery) asked if I was going to point out the mistakes. I said not at the moment, too much going on. She said not to because her friend, who questioned the care her elderly parent had received, had been told to find another surgery as she was no longer welcome there!
I hope you get better service at your new surgery when you change.
Schenks , I'm so sorry you have to go through this rubbish. This GP who is supposed to treat, care & support you should be ashamed of herself. She's obviously not used to educated people turning up at her surgery and feels threatened, and it strikes me that she is a bully. Some dr's consider themselves god like - dictators all powerful - who expect their subjects to shuffle in line, heads down mute unless asked a specific question, hands stretched out for the pill, which will save them from all evil (& keep them submissive). 1984 comes to mind -
I hope you have now recovered a little from the experience and get the injections you need. Chin up!!🙂 We're with you.
Thank you, Rennixon. You are so damned nail on the head. Perfectly described. Do you know, I am in the counselling business and I never even realised, until I read your reply, that I was actually bullied by her? I am so accustomed to girding my loins and focusing on how to manage her that it hasn't occurred to me to look at the whole interaction, you know, stand back from it. And in realising that I was bullied - thankfully I took my husband who witnessed it - I recognised that the resultant avoidance of coming back online to reply to those who were kind enough to respond to me is a perfect example of post-traumatic avoidance.
Your reply somehow has got through. I have been bullied by this neurotic, hyperactive, autocratic b*tch with the crinkly-grinned veneer of friendly efficiency and expertise for going on 8-9 years - and I've had it. Because the b*tch didn't have it I had to phone the consultant's secretary to find out where the damn B12 request letter was - and lo! His secretary had been on holiday for 2 weeks! So she said it had now been sent. That was the week before I went to see Iron Knickers on the 15th. Then I rang up yesterday to make the appointment at the treatment room, giving IK a week to contact the nurses with the request for B12 as instructed - no such instruction had been passed across from IK's room to the treatment room, some 50 yards away. Rang the surgery - this was Friday 19th, the receptionist rummaging through that day's post and : lo! The letter was the last one there! It had been dictated on 27th July, typed on the 4th August and sent God knows when to arrive on 19th August. Would any other business get away with treating its customers like that?
Until they start thinking of us as customers & not patients the system will not change & you're right no other business would get away with it. Just proves what a total waste of time some dr's are.
I recognise the trauma, as I've been through it myself. I avoided the dr's after my favourite left and my choice was limited to one who was writing a prescription for anti-d's before you sat down or the male chauvist bully! I am woman therefore I must be neurotic & stupid!
Thankfully we have a new doc now who just happens to by hypo!
Glad the letter has turned up & that the fiasco can take a step forward. Still amazed that one person can take a holiday & the system breaks down.
Sorry Schenks but I am sitting here splitting my sides with laughter, I could almost have written your post word for word and I got nowhere either. Unlike you I did leave them in no doubt what I thought of them - asked if they thought we all left our brains outside of the surgery door and medicine was not rocket science or words to that affect. I also suggested a modicum of respect would not go amiss when dealing with their patients. Then was referred to another twit who was so high above us plebs - he was lucky not to sustain some physical damage. His face when I told him a piece of news re my intellectual ability was joy to behold - made my day but got me nowhere. Use the God given brain and try the road we are all on - it works and the blood pressure stays at a reasonable level. God bless.
What a brilliant idea! I'm old enough now not to give a rat's behind about being in the dock! At least we'd get heard. And between a few of us, we's manage to cack out a sentence or five!
Schenks , I empathise completely with your anger at doctors. I've been treated like sh*t for decades too.
I've managed to deal with the anger slightly by simply bypassing doctors whenever I can. So I treat my own nutrient deficiencies, treat my own thyroid, and pay for my own blood testing. I resent the necessity, but I'm far healthier than I would have been if I'd left myself in the hands of doctors.
I'm with you, kid! Through this site I have become so much more sussed that, thanks to what I have learned through all of us like me, I am well enough to be able to understand what the hell is going on and what the hell I need to do about it. what is staggering is that, even though I am evidently crawling out of this sh*t the GPs are in no way interested! The two who are interested, however, are the endo - who is insistent that at some point I will have to bring my >0.05 TSH up, and the rehab consult who blanched at the idea of every-other-day B12 injections for a couple of weeks (and he's maybe Iraqi, I think, so he must have been well shocked! Tee hee.)
She looks to be in her 40s. My poor BH gets completely bamboozled by the pace and complexity when he's in there with me. It's like watching an intellectual sword fight! Maybe that's why she panics - she has the power but has met her match, so she has to rear up like a spitting cobra. sickening. Wouldn't it be something if we had the legal resources to plant one on them, eh?
It would indeed my dear . My OH knows what's going on with me and he's not afraid to speak up , but then I don't have a quarter of the problems you have , and she's not such an ogre . She's out of her depth for sure with died in the wool views ! Are you going to see about changing doc's . It's a minefield isn't it .
Yep - got the name of a new practice from a woman who takes 4 grains of Nature-throid, goes to the doctors' who throw their hands up but don't nag!
thanks for the support, kid. You take care too.
They do my head in. I rang up to have a smear test and they told me it was the wrong point in my cycle. The middle of it and to phone back the first day of my next period I did, then they said they only had oppointments for 3 weeks which would be in the middle again. Never known anything like it. Just thought you could get one if it wasn't the time of the month. Can't even get in to get it done.
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Why oh why are the Guidelines ignored when it suits as in the case of B12 and yet rigidly adhered to when it suits - in the case of Thyroid.
I am so looking forward to reading it. Please do get it all down. Someone on another forum (can't remember where) self published a book through Amazon, an account of her new life when she moved to another country. Light hearted, interesting and a lovely read. Only thing was the proof reader didn't do the best job!
What do I need to do about my 9 year olds low ferritin levels - my GP surgery won’t talk to me about it?
Please can you guys look at this for my mom? Thank you!
Please help - I feel like I am losing myself thanks to my thyroid!
My fight to keep my T3 and the effects of sweeteners
where to next?,the light at the end of my tunnel has been switched off. Help. Comments please
