Sunday, 6 February 2011

Dr Death I Presume?

This week, I did a very brave thing. I finally filled in the forms to change GP's surgery. It's so terrifying that I drove round town, looking for the surgeries on my little list feeling like I'd rather pull out my own entrails next time I need surgery. 

I've been with my surgery for over 10 years and they're unremittingly atrocious. The trouble is the surgery I had before was worse and the one we relied on when I was a child was shocking.

I started getting Crohn's symptoms when I was about 10. Every now and then, I'd start vomiting and it would just go on and on and on until I was delirious, writhing on the bed in agony, unsure of my own name. One night, at about 3am Mum finally called a doctor in desperation, who told her to give me paracetamol until the morning, too attached to his warm bed to care.

My first GP here in town refused to do a simple blood test for.....wait for it.....14 months. I needed Vitamin B12 injections following an operation I'd had, but they were making me strangely ill. I would vomit after each injection then get strange fevers, tingly nerve pains and terrible exhaustion for weeks after each shot. When I finally managed to get the blood test, it turned out that for some odd reason, I'd been storing the B12 and not getting rid of it from my body. I'd built up 6 times the safe level in my blood. "Oh my God, we've been poisoning you" was the shocked reaction from my consultant, but I'd tried everything to tell my GP this for over a year. I'd bought in pages photocopied from the BMJ proving my reaction, I'd begged, pleaded and even paid to see a private neurologist. The GP had refused to do anything else until I'd seen one and the wait was over 6 months on the NHS.

My current surgery have sent my 5 year old home pre-fitting with a 41% fever suggesting we "see how he is after the weekend." By midnight NHS Direct told us to get him straight to hospital. He had a terrible bacterial tonsil infection. My husband has a history of early-onset heart disease in his family and has already had open heart surgery himself to repair a massive hole in his heart. Despite these teeny-weeny clues, the GP still refused to investigate chest pains, greyness and clamminess 6 TIMES early last year. In the end, the GP got fed up with him, sneering at Dave that "It's not like you have any history of heart problems is it?" Dave pointed out the 8 inch scar running like an angry stream from his neck to his sternum. Still nothing. After an exercise test, the practise nurse suggested a course of steroids. The GP refused to prescribe them.

I met one of my GPs in the queue at Marks & Spencer once. I was waiting for surgery and very ill. The GP raised his voice to old-lady-with-no-hearing-aid levels and asked when I'd stop taking pethidine as it was addictive and I might become an addict. The queue stared on in fascination and I welled up a few tears. His breach of confidentiality and professionalism was at best thoughtless and at worst cruel.

I could go on and on and on. You might be lucky, but just think for a moment. If you don't have a story like the one's above, I'd be very, very surprised. The child sent home who turned out to have meningitis; the woman told the lump in her breast was "just a cyst" that turned out to be cancer it was too late to treat; the old man with Parkinsons screaming through the night in pain, refused a home visit three times until he died right there in the bed. All of those things happened to people I know and all could have been avoided.

I've lost count of the people who've looked at me in total confusion : "But why? Why are they like that?"

Because they're gatekeepers, that's why. They guard the gates of the NHS, breathing fire at unsuspecting patients who dare not to get better under their own steam. They hold the magic keys that unlock "further investigations" or a "referral" and they follow the ancient lores of "let's see how you go."

Somewhere down the line, perceived wisdom was passed from GP to GP that you never spend NHS money until all other options have been exhausted, including putting your fingers in your ears and shouting "La-lalalalalalalala-I-can't-hear-you." But does it actually save the NHS money at all? Would it not be better to just :

1) See condition
2) Recommend appropriate course of treatment/referral
3) Treat patient quickly before conditions worsen or complications arise?

In fact, they do this in Italy. You see a GP who sends you for whichever scan or appointment or minor surgery you need. Unlike here, they discover the small clot that hasn't yet become a major stroke, or the small ligament tear that isn't yet beyond repair or the tell-tale cloud on an x-ray that shows a tumour not yet allowed to rampage through lives and families. You rarely wait, and most things are sorted out in a matter of a few weeks.

Does it really save anybody anything to fob off and ignore and dismiss? Or does it just end up costing an enormous amount more in the long run, both in terms of money and suffering?

What's more, GPs are under no obligation to be super-doc. They can shuffle off to general practise, rust up nicely and forget their training. They can stagnate until they've forgotten basic examinations or rare tell-tale symptoms. They can become so immune to suffering, so cynical from malingerers that slowly, their patients morph into one and they start ignoring the lot. If that's the case, there is rarely anyone in charge of them to pull them up or a manager to report them too. They are lords of all they survey.

My particular terror comes from the one thing I can't bear : Pain.

I handle almost everything else myself. If I need an investigation, I arrange it with Addenbrookes, if I can't eat, I organise my own liquid diets, if I can't stop vomiting I give my own injections, if I feel rubbish but know that no-one can help, I just put up with it. All I need from any GP is the occasional ability to ease unspeakable pain. Not all the time. Months can go by where they would forget what I look like, but as damage starts to build up in my bowel, as it twists or gets stuck together, or blocks itself with mesenteric ulcers and fibrotic tissue, I get pain that I just can't tolerate. I need to know that I can ease that pain or I have no choice but to go into hospital, in and out, in and out until I'm sick enough for surgery, costing the NHS tens of thousands in pointless extra care.

This great gift is a GPs to bestow. Even a hospital consultant can only recommend that certain drugs are prescribed - each GP is an island and each works to his or her own values and opinions - there is no standardisation of care, no consistency. I have to register for the new surgery before I can discuss any of this with a doctor or go through my dazzlingly complicated medical history. If it turns out I get a GP who "doesn't believe in opiates" or "won't give pethidine for tummy bugs" or believes pain killers are "dirty drugs" then I'm left high and dry. I have absolutely nothing I can do about it, nothing. I must simply go back to writhing and crying in hopeless desperation.

Letters from consultants or pain specialists will make no difference at all. My epic set of notes may be too taxing to pore through. My condition might be too complicated to bother understanding. He or she may never even notice the strokes or the seizures or the heart surgeries or allergies lurking in the masses of detail.

I might get lucky. Rumour has it some GPs are actually quite good these days. Some have apparently started listening to their patients and even reading their notes. We'll see, but if this post tells me anything, then giving largely unregulated, unmonitored GPs more power, giving them more responsibility and putting them in charge of nearly all the NHS budget is a very, very, scary move for anyone with more than a sniffle or a boil. When Caroline Spelman pleaded with the audience on Question Time last week "But wouldn't you rather your GP made decisions about your care? Wouldn't you rather it was someone who knew you?" Millions of chronically ill or disabled viewers shouted back at the TV "NOOOOOOOO!!!!!" with a shudder of pure horror.

That's the last thing most of us want. The very, very last thing.


  1. I am not sure why preventative medicine hasn't made it to these shores, but it's nearly unheard of here and I simply don't understand it. My great uncle - who is a neurosurgeon - always said "There's no such thing as a hypochondriac; they just have an illness which hasn't been diagnosed." Not all of us are "worried well" or "just seeking attention" and yet that seems to be the assumption. I cannot say there aren't people out there who do this sort of thing - just like the "scroungers" of benefits and DLA they're going to exist - but tarring everyone with that brush just seems ludicrous. I shouldn't have to go into my GP armed with sheaves of papers from wikipedia (not the most reliable source of information) in order to try and convince them to look deeper at an ailment or collection of symptoms. I shouldn't have to guess at a disease so I ask for the tests because no one is going to bother to look. I can't lose weight - literally CANNOT - but no one can be bothered to figure out why (it's obviously my fault). I'm actually in the opposite position as I am constantly prescribed mild painkillers to "manage pain" but no one is even remotely listening to me trying to tell them that pain is the LEAST of my problems. I can deal with pain. I've been dealing with it all my life. What I can't cope with are the constant blows to my immune system, my incredibly high fatigue levels, the migraines, the weird thoughts I have from time to time which usually start hitting me when the migraines increase in frequency, the hospitalizations when my immune system freaks out. I have had constant issues with my immune system and so many symptoms match up with friends from lupus that they're all urging me to get tests and get trial medications to deal with it but no one can be bothered to do so - but then, they've all said the same thing; lupus is the sort of illness that destroys your organs first and THEN shows up on the tests so I guess I have to wait till something stops functioning. "Oh you just have lumpy breasts" has been said to myself and many of my friends - two-thirds of those friends have breast cancer, one dead now, two more terminal.

    I don't know what can be done about it, really. I know there are some horrible patients out there and the burnout rate in the medical field is high but surely after a couple of years a doctor can tell the difference between the problem patients and the ones who really just want to figure out what is wrong so they can try and fix it. And if they're burnt out, maybe it's time to retire or swap fields; it's helping no one to be dismissive towards patients.

    I have an okay doctor now but he's a locum, and when he goes, I have no idea what I'll do as I've just had to move from the last GP who kept losing my notes and trying to tell me there was "nothing wrong" with me...only to be reeling when they discovered I had just been released from hospital.


  2. Me and my husband have spent the last few nights trying to work out how to speak to the GP to get tests that I know I need. We know we cant just ask as he cant know that i have been looking into it myself, a sure fire way to get their backs up.
    (last time I did that he did them he said the results were fine - when it turned out they weren't, he just wanted to be smug).

    I have been through 10 GPs, at 2 different surgeries and they have all been the same. I havent been back since this happened to me -
    not the GPs fault I know but she insists I have mental health issues even though I have been diagnosed with a physical illness by a specialist. This is the second time she has sent me to CBT and the second time I ended up worse, this time I had a nervous breakdown. The thought of going back terrifies me.

    At the begining of my illness one GP called me a silly girl as I didnt want my ears syringed - I have had surgey on my ears and a nurse has said that its not a good idea as it could perforate my eardrums, throughout my childhood this happened a lot so I knew didnt want it to happen again. I told the GP this and he said 'dont worry it'll only take 6 weeks to heal'. I told the nurse this and she laughed and said 'oh he does say some silly things'.
    She syringed one ear, I collapsed, I woke up on a bed, room spinning and it didn't stop spinning for 2 months. I had to stop work and I haven't been out alone since, that was nearly 5 yrs ago.

    My family used to think I was just moaning until my sister started getting symptoms like mine, and they are they same with her. I don't get it, I really don't. It frightens me to think how much power they have over peoples lives now, I am scared for the future.

  3. Good luck sue in finding a new Doctor. I have had my Doctor 20 years and i wouldn't say he's a good Doctor but is a decent caring man and when your ill like i have been over the years i can settle for that

  4. I wish you well with your search. My horror story (and we all seem to have them) is my 5 year old had burst appendix. It was missed by 2 GPs and 1 Paediatric Dr (but not the Junior Doctor who was sadly overruled by said Paediatric Dr). She suffered for 1 week with this excruciating pain as we took her back & forth to A&E & the GP. In the end, it turned out well for her (in that she didn't die I suppose) but we sued them for negligence (we won), still the most disturbing point to us was when the GP's notes were released it stated that the parents were overly protective and the child was playing up to their worries! My daughter was screaming with pain, she weighed hardly anything by the end of the week, her pelvis was "a mess" according to the surgeon, She had a stomach drain for 4 days to remove the pus in her tiny body which also covered her ovaries and still may be affected long-term. Arrogance abounds - most GPs are unhappy with the responsibility that this change will bring. The one's that are keen tend to be in more metropolitan areas, who have greater choice already and probably have an issue with their local hospital. The majority now are quite happy to work with their secondary care colleagues. Preventative medicine is often "fan-fared" in theory, but requires planning and secured financial input. With cost restraints as they are of course, the reality is very different. My experience of the NHS shows these things usually go around in circles - come 10 years time we will probably be back to where we are today...

  5. Absolutely shocking.

    I must say, the difference in care in Scotland compared to England makes me glad I live in Edinburgh. I can see any G.P. I want in my local practice; I get fast referrals to consultants/ scans/very regular blood tests etc.

    I really feel for you having a similar bowel problem which, as yet, is undiagnosed though it's suspected to be ulcerative colitis.

    Best wishes,

  6. Wow, I guess I have to consider myself very lucky, my GP is the complete and utter opposite of this. He's been my doctor and looked after me since I was two. As a child I had astma, he would always listen, send me for test when he couldn't figure out what was wrong with me right away and he even drove me to hospital once to put me on a nebuliser (a massive inhaler that pumps steroids into your lungs for hours) because he recognised the symptoms that I might be about to have an asthma attack.

    Even as a young adult he always asks me how I've been and what I'm doing now, doesn't judge or stereotype you, or make a decisions about from his impression of you rather than the evidence of your symptoms and history. He is the most in demand GP in the area though, so unfortunately he may be the exception to the rule.

  7. That's so good to hear Gregory. It gives me hope, lol.

    I did have an amazing GP once, so I know they're out there :)

  8. You said that word - Addenbrookes - and I winced. We're in Cambridge and my mother's treatment there has generally been appalling.

    Our GP surgery is Nuffield Road and they're generally good, if you're still looking (unless they're your bad surgery, in which case...let me know who've you seen so I can avoid them all!)

  9. Sue

    I was certainly shouting back at Caroline Spelman "Nooooooo".

    My experience for what its worth is to find a young GP, certainly less than 40. All my worst experiences have been male GPs of my generation ... which means they're likely to retire in the next few years. I don't know what happened to this cohort but they shouldn't take it out on the patient.

    A consultant paedietrician once told a conference for children with ME/CFS that there were three sorts of GP... the good involved empathetic sort ... the benign ignorant sort that you may be able to bring on board ... and the totally toxic who you should get away from as soon as possible. Sounds like you have had more than your quota of the toxic ones.

    I've heard good things about Dr Susie Rockwell but you may be out of her area. She is Hove I think.

    Syzygy x

  10. I don't know where you're finding such terrible health care workers! I have never received (or given!! - student nurse) such poor care.

    And speaking of finding and treating before complications, I've had first hand experience of this! While observing in the TIA (transient ischaemic attack - "mini stroke" )clinic we saw a patient who had been ignoring TIAs for a while. The patient mentioned symptoms to GP, who referred the patient immediately to us. We saw the patient, and after discussing his symptoms, I took the patient up for scans of his neck. The scans showed a serious problem, requiring an operation, otherwise the patient was at high risk for having a serious stroke. The patient was immediately admitted and had surgery the following day. I followed up on the patient on the ward, and the patient was home less than a week later..
    How's that for seeing and treating before complications?

    It's not always perfect, but we do our best.

  11. I have a rare condition, Ehlers Danlos and my experiences with regard to GP's has been a bumpy journey indeed. Declared until diagnosed in my early twenties as an attention seeker. Now in my forties left to cope alone with a mind blowing painful condition. I am lucky with regard to pain relief. But I am left extremely reticent with regard to TRUST and the medical profession. I understand wholly the trauma in the post. I empathise and yet at the same time in the current climate find access to services bizarre. Wheelchair services for example are bizarre with their rules. An indoor electric chair for six months before being considered for an outside/indoor chair! A consultant who belittled me so much I wanted to complain yet my GP told me making a formal complaint would taint future care. I want to believe truly I do but I think something is missing in General Practice these days. I can't quite put my finger on it, but continuity of care seems to be a problem.

    I wish you luck with your new practice and I sincerely hope that finally you are treated appropriately and with the respect you deserve.

  12. Pie - it sounds like you'll be a really really good nurse.
    As long as you carry on as you are, we might be lucky enough to see the back of the dinosaurs I've had.

  13. I have to add my voice to Gregory's and say I have been lucky. Even with Atos.

    One of my family members, however, has a GP she doesn't like. She asked a few questions about giving birth, and he was instantly going on about having been up to his ankles in blood at home births. Which she wasn't even asking about! He also said that the 2 local hospitals were "6 of one and half a dozen of t'other". Fortunately, she found out which one had a Special Care Baby Unit BEFORE going into labour 2 months early.