Sunday, 3 October 2010

I only blog when I'm angry!

My regular friends know that I'm not a regular blogger by any means. I used to be what now seems a lifetime ago, when my body was more or less still working and not flashing the warning lights at me constantly. So, what exactly is it that has got me to take an extra morphine pill, prop up a few extra pillows behind me and take my keyboard in my hand? Well, it is topical and certainly not something that has not already had people blogging away for a few days. See, this is another problem with living with my body, I am always running late it seems with everything, but I won't let that stand between me and another blog, oh no, not when I have downed drugs!

This blog is dedicated to the mutterings of a little known backbench Conservative MP who hails by the name of Nadine Dorries. Frankly, until a few days ago I had never heard of her, and I could happily have gone through the rest of my life without that little bit of information becoming known to me. Sadly, life never is happy to leave me in ignorance, not when I can be upset, offended and angered in one fell swoop. 

So what exactly has Nadine done to upset me do much? Well, in order to understand that question, I need to digress a little and fill in some blanks about myself. Honestly, I am not simply seeking to have a moan about how fortune has visited more often than I deserve and left me with pitfalls in my way, but to explain why her comments got to the core of who I am today and frankly, made me detest and pity somewhat a woman I have never met, nor if I am honest, want to. 

I am a recently turned forty something dad of 3, divorced man, non of these is really that important, however, I am also disabled, and that is the salient point. In 2003 after working for 20 years, starting and running 2 successful businesses, creating jobs, training kids and long term unemployed, paying lots and lots of taxes, I had a massive breakdown which meant I lost everything I had worked so hard to build. I don't blame anyone for that, life is a roller coaster after all, sometimes you win, sometimes you loose. What made this situation hard to deal with was that despite paying taxes and contributing to society over the preceding years, when I needed help the government made me feel like a complete scrounger. It wasn't that it was going to give me huge amounts of money, oh no, just a meagre amount of incapacity benefit, hardly enough to keep a family going for a month, but despite that, somehow we managed. The breakdown left me with devastating agoraphobia and anxiety problems such that leaving the house was impossible for a long time, and even now, some 7 years after the fact, those problems are still very much here and something I need to deal with daily. These problems are not what made me write this blog. 

In 2007 I suffered from agonising back pain, 6 months of being rushed to hospital in ambulances, once I had to be rescued from my home by firemen as I collapsed in my bedroom and passed out and the stairs are so narrow, the ambulance staff could not get me down in my passed out state, and then sent home after a cursory visual check up and being told I had a sciatica. All it needed was an MI scan, but I was too large for the local scanner, and it was too much trouble for them to tell me or my GP that, and too much trouble to book me in anywhere else. In March 2008 after another collapse at home, I was back in hospital, being told the same things, refused a scan. I ended up hacking the bedside internet to search for a place that could do a scan and arranging everything myself in order to get one. That done, the incompetant doctors at my hospital told me to go home, loose weight and keep mobile, all I had was a slipped disc and I would be fine. Given that I could barely move, was in constant agony and taking more morphine than it would take to knock out an African elephant, I asked for a second opinion from another hospital, where upon it suddenly transpired I was in imminent danger of paralysis from the chest down and needed a major 10 hour operation on my spine to simply keep me walking. The operation worked thankfully, well, it worked to the extent that I can use my legs to walk, not far though, 10 feet is about the max really, and it has left me in constant pain, I can't sit or stand or walk, 5 minutes sitting up and the pain is beyond anything I would wish on my enemy, not even on Ms Dorries. This also is not the reason for this blog. 

Today, my life is a very limited and simple one. Because of the pain, I can't really do very much at all. I spend a lot of time on my back, either on the bed or the sofa. I walk very little, even trips to the kitchen are kept to the bare minimum. outside activities are limited to school trips in the car, the walk to the car being the hardest, and getting out after the drive means being a bit braver each time as I know what the pain is going to be like afterwards. Even shopping is planned so as to do as few trips as possible, it is not only the physical issues, but being outside and around other people still gives me panic attacks. I can only manage any of this with a cocktail of medication. Anyone who has taken strong opioid pain killers such as Tramadol or Morphine will know just how many side effects there are. On top of that I also have anti-anxiety pills, muscle spasm pills, neuropathic pain killers. To stop the side effects I need other pills to stop my stomach being eaten through my acids the other medications cause, pills for diabetes which was triggered by the high doses of steroids I needed after my surgery, blood pressure drugs to stop the neuropathic pain killers making it too high, Quinine pills to stop cramps... I could keep on going, but I figure you are getting bored about now at my drugs regimen and want to know how this all is relevant to Nadine Dorries. 

The answer is simply this, I don't have much of a life really. Other my home and my kids, I can go for long periods where I don't see any other human being, not even my mother who only lives 10 doors away from me. She is 76, and is still more mobile even with her dodgy knees and worn out hips than I am. I keep in touch with the world and attempt to feel part of society by spending time online. Yes, I tweet and I blog. It has become my social circle, my friends are online, the ones who would miss me and give a damn if I disappeared are online. When I need support, they give it freely, if I need advice, they offer up pearls of wisdom I value, when I am reduced to tears, they make me feel valued. I don't tweet for the love of tweeting, I tweet because my life has become so closed off that it is my tiny window on the world. This is why Nadine Dorries has upset and offended me. 

I don't demand to be kept in luxury by the state, a roof over my head, a shirt on my back and food on the table is all I ask for. I don't have much in life, no flat screen TV's or games consoles for the kids or wads of cash in my wallet, the burgler who broke in to my house a few weeks ago found that out all too quickly, althouh he still stole my wallet! 

I don't want to be a burden, I worked from the day I left school until I became disabled. I still live in the vain hope that I might be able to do something, be helpful to my community and society in some way. For the last 3 years I begged the DWP to let me study from home, gain some new skills that in the future if my physical condition can be improved with new medications or techniques I could put to good use. They ran me and my support worked round and round in circles and then offered me a Introduction to ICT course. The fact that I was an I.T. consultant had simply not registered in their minds, obviously, making me learn how to open word, move a mouse and print a letter was going to suddenly make me a viable person for a job, forgetting for a second that I can't walk, I can't sit, and I am hopeless if there are other people in the room with me. 

So Nadine Dorries, I won't ask you to forgive me for tweeting, yes, I tweet a lot, usually flat on my back, on my sofa. Report me to the DWP if you wish, I mean, I get such a huge amount of benefits that by taking mine away will reduce the countries deficit completely in one fell swoop. I honestly hope that you never have to spend a day with the pain that I have to, it is debilitating and soul destroying, but please, don't have the front to stand on your pedestal and look down on me and those like me. Don't label us as scroungers and idle and lazy workshy people, because we are not here by choice, but because of circumstance, a circumstance neither of our wanting or our choosing. We the disabled are NOT the ones who brought this country to its knees and have caused a huge deficit, it was the bankers, and those who were greedy and thought that betting huge sums on a bubble was the way to go. 

Society is richer, and my life certainly is because of the love and caring of the disabled people who each day not only cope with their own problems, but take time out to support and care for their fellow disabled people. Society is richer because even though they have little, they would give of the little they have to help people who they feel are worse off than themselves, give of their time, their love, their patience, their caring and even of the little money they have. 

They say society is only as civilised as the way they treat their weak, needy and poor, what does it say for our society that elected people such as you, feel that it is the disabled that should be the target of your attack and not the tax evaders who leave our country £48billion short of tax revenue each and every year? What of the bankers? What of the members of parliament who fiddled expenses on already substantial salaries? We may be ill, we may be poor, but we are not going to remain silent while you defame and slander us.

Friday, 1 October 2010

Trust deficit - A prescription for failure.

I'm 40, and over the years I have had many different doctors at a fair number of different surgeries. During that time, relationships that we the patients have with our GP's have changed a fair amount, and that has not always been a bad thing. In the past, doctors were very likely to prescribe us something, not really explain what was happening, and seemed to many of us to be somewhat aloof and apart from us the patient. Today, they are less likely to simply send you home with pills, mostly will explain more about what is going on, offer advice and in the main, more of us feel more in control of the whole process, these are all changes that most of us are happy with. 

There are some basic things that our relationships with our 'healers' need in order for the relationship to work and ultimately give positive outcomes. The most important one is trust. Without trust, the entire relationship simply fails. We have to trust doctors on more than one level. We have to trust that they are competent and knowledgeable, that they provide treatments for us based on what is the best solution for us and not one that has been biased by third parties such as drugs companies, and that they respect us as patients who by necessity have to put our faith in them. If you cannot trust that your doctor, then it becomes impossible for you as a patient to be treated by them. 

Thankfully, there are things in place to help us ensure that our doctors are competent, there are always a few who fall through the safety nets, but in the main we can be confident of that. There are undoubtedly doctors who are more influenced by certain treatments than others, but again, there are guidelines and safeguards which although not perfect, do give us some confidence that at the end of the day, we will be making an informed decision about our treatment. 

Lastly, is the whole question of knowing that your doctor respects you as a patient and as a person. That your concerns for your health are going to be listened to and accepted, and that no matter what you symptoms or illness, that your doctor will do their best for you. This at its heart, comes down to the professionalism and attitude of the doctor and their willingness to have a proper professional and respectful relationship with you, the patient, the person. We have to take on trust that when we go to see a doctor for say chest pains, and he sends us home and tells us to take 2 paracetamol and not to worry, that he knows that it is simply an infection which will get better by itself and not warning of an impending heart problem. 

But, if you have a mental health issue, it is critical to your condition and your treatment that you can have trust in your doctor. If you felt that the doctor felt you were simply a malingerer or that your condition was not a genuine one, then how could you feel able to go and see that doctor and talk to them about your condition? Many mental health issues leave the person with little self esteem, they have little or no confidence in their own judgement and may also have feeling of paranoia. It is enough of a challenge in that state to go to your doctor and bare you soul to them, to then feel that your doctor will ridicule you to his friends and peers is something that would stop many of them from trusting their doctor and seeing them. 

It was shocking then, to learn of this article in The Pulse, a magazine for medical professionals in general practice.  For those without a subscription, the text of the article is below;

I’d thought, hoped even, that the recession and the inevitable cuts to frontline services that will follow might rid us of hare-brained ideas that do nothing except chomp away at the NHS cake. But then I came across a scheme designed to lift the spirits of melancholic patients by treating them to a few days out on a farm.
Anyone living within welly-throwing distance of Ipswich and feeling a bit down in the dumps can ask their GP (who is ideally placed, etc, etc) to refer them to Farmer Giles’s homestead for a few afternoons of milking and muck-spreading. Which rather ignores the obvious fact that each and every depressed patient on the books will exclude themselves by claiming to be ‘allergic to dairy’.
But that apart, what’s not to like? It might encourage the punters to take an interest in agriculture – it could even reduce their tendency to mount phobic avoidance responses at the first mention of fruit and veg. Although if a heartsink did happen to be bitten by the organic produce bug there isn’t a lot of farming to take an interest in around Basildon – not counting the ubiquitous cultivation of cannabis in the loft, of course.
‘Lettuce and lovage’ is one thing, livestock is something very different. OK, we’ve all seen the research showing that keeping a pet dog or cat is good for Grandma’s mental health. But anybody proposing that the benefits might be proportional to the size of the animal is talking complete bullocks, even when you factor in the substantial savings in follow-up costs when you replace Purrikins with a Bengal tiger.
And then there are the health risks inherent in every trip to the farm. As sure as free-range eggs are well, just eggs, at least a dozen of the participants are bound to succumb to E. Coli or Campylobacter infections after petting the cute ickle lamby-wambies or stroking the nice horsey.
Click here to find out more!
Not to mention the possibility that the Wurzels might turn up, knock off an impromptu rendition of Combine ’arvester and provoke the depressed into enacting a tragic suicide pact.
You might accuse me of getting soft in my old age, but I really don’t want to see any of my serotonin-depleted melon farmers chucking themselves under the wheels of a passing tractor or into the jaws of the threshing machine in a plot line that would even make the script editors of The Archers pause for a reality check.
Why worry? It’s far more likely that I’d see them making a beeline for Ye Olde Worlde Home-Made Fudge Shoppe in the converted barn for some serious comfort food, followed by some even more serious purging and vomiting.
We could scale the whole thing down, I suppose. ‘Mrs Glum, would you prefer your repeat prescription for Prozac or a hamster this month?’
It’s just a shame that we’ll never be able to properly take it to a grander scale… include trips to the zoo, county agricultural shows or American state fairs. I can just imagine the YouTube footage of my heartsinks dodging violently-hurled chimpanzee droppings in Regents Park or wrestling grizzly bears in Wyoming.
Now, that would be worth shelling out for the cost of their hotels and transport, recession or no recession.” Dr Tony Copperfield is a GP in Essex.

Now, I have no issues at all about doctors unwinding and comparing notes with their peers about the issues they have had with some of their patients, but this article goes much beyond that. To label patients as 'Heartsinks', "Mrs Glums' and 'seratonin-depleted melon farmers" shows nothing but simple contempt. That this pseudonymous Dr Tony Copperfield claims to be saying only what most other doctors are too scared to openly admit leaves patients wondering just what is their doctor thinking about them when they visit them. Indeed, this is a quote from the publisher of one of the books published by Dr Tony Copperfield.

'Few people realise it, but underneath the caring demeanor of the nations GPs there lurks a darker side - a side which gets fed up with the frustrations of the NHS and loses its sense of vocation. GPs won't admit to these thoughts, though - and they don't have to, because Dr Tony Copperfield does it for them, even at the risk of his own career. His fearless writing, well known to readers of Doctor Magazine, gives vent to the anger and frustration which bubbles just beneath the surface of so many family doctors.'
For me, as a patient with both physical and mental health issues, this article I found to be both shocking and offensive. It is never easy to visit my doctor, and to now have a feeling that behind my back, my GP may well be branding me and my symptoms in the way that the article has done, simply makes a hard task simply much harder. To the doctors behind the Dr Tony Copperfield articles, it may simply be humour, for many of us patients it is a betrayal of trust, offensive, and unprofessional. One of the real doctors behind the Dr Tony Copperfield pseudonym is Dr Keith Hopcroft.

I know that some have already sought to defend them by saying the article was published for a select audience, but in todays world of the internet that simply was never going to be a possibility, but even that argument does not hold water when it appears that collections of these articles have been published and are available at bookshops. 

Doctors are only human, but by their chosen profession they also bear added responsibilities. They swear to do no harm, they are obliged to hold our consultations in confidence, but they also need to maintain our trust, and it is at the patients cost that they loose that trust, but ultimately, the cost may be their own.