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.