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Why the NHS is like a Porsche 911.

The Porsche 911 suffers a fundamental design flaw: it’s engine is in the wrong place, over the rear axle, leaving the car struggling for grip at the front, and tail happy. Decades of development have seen the engine’s weight move towards the middle (where it should be), and by the 1990s Porsche was successfully keeping stockbrokers from going backwards through hedges, while keeping the overall shape that people seem to like.

The NHS is a lot like this car

“The NHS is being Privatised” is one of those perpetual political tropes, wheeled out by the hard left when Labour’s in power, and everyone to the left of David Cameron when the Tories are. This is an example of ‘the political class’ (broad definition; which probably includes political obsessives like me, who’re reading this blog) speaking a different language to the average voter.

What the NHS means to most people is a healthcare system, funded out of general taxation, free at the point of delivery, at which they can rock up when ill, no questions asked. Whether or not it is state-owned matters not a jot, so long as they don’t have to pay when they’re hurt. What the NHS means to a left-wing political activist on the other hand is ‘the only thing on earth which is both state-run, and popular‘. The NHS, following the triumph of Thatcherism, and the utter failure of traditional, trades-unionised municipal socialism, is all that is left of Atlee’s post-war consensus and so critical to the left’s image of itself.

But contrary to the Lefties’ belief, the NHS has always made use of significant private business. Thankfully, even Atlee didn’t nationalise the pharmaceutical companies. Most GPs are private-sector businesses which generate their business through NHS contracts. Services like cleaning and catering are often outsourced to private companies and have been for decades. And following reforms by the Labour party, some medical services are now run by for-profit businesses too. So the NHS is being privatised, a bit, by piecemeal and where appropriate.

But since the basic ‘free at the point of use’ structure of the NHS is not under threat (even the morons of UKIP don’t want to fight the electorate over this), the ranty lefty screaming about ‘profit’ just seems ridiculous. I too support free(ish) at the point of use healthcare funded out of taxation. But I suspect private businesses competing to deliver services, especially if reforms can mean money follows patient choices, will deliver improvements in the standard, efficiency and responsiveness of care. I hope the reforms continue, backing success and learning from failure. Eventually, the state will control the spine of the NHS, guarantee the principles, and provide funding; but leave the actual provision to people and companies who aren’t owned or employed directly by the state.

Which also brings us neatly to the Private Finance Initiative – something the left thinks is ‘privatisation’ too and the right thinks is state spending “off balance-sheet”. The purpose of PFI is to deliver hospitals now, with the private sector bearing the delivery risk, and generating the financing. In return, the state offers a long-term delivery contract. The contract rolls up the cost of delivering, managing, maintaining and often cleaning a facility, so cannot be compared directly to build costs.

The PFI is delivered by a special purpose vehicle, a company whose shareholders might include a bank, a construction company like Balfour Beaty, a service company like Capita and various others. Investors typically bear the delivery risk should costs over-run. And this is why PFI projects have a good track-record, better than that of the state, in bringing things in, on time and on budget. This is why the ONS said they were good value, despite slightly higher financing costs. The state is a lousy project manager; the private sector, when it stands to lose big money if a project over-runs, has a good track-record of delivery. The rapid spread of PFI round the world (another successful British innovation in political economy, like privatisation) wouldn’t happen if it didn’t deliver benefits.

And the NHS will survive, and the left will still rant and rage about “privatisation”, and the public will still raise an eyebrow, suspicious of politicians’ motives; but so long as the NHS remains free at the point of delivery, the electorate will demonstrate their ‘false consciousness’ by studiously ignoring the silly, shouty people demonstrating and their Socialist Workers’ Party placards.

The NHS is slowly being “privatised” and has been since it was founded. The Trans-Atlantic Trade and Investment Partnership may open the NHS to American healthcare companies, if they aren’t already here. This is a good thing. Standards improve with the input of new ideas, and the abandonment of bad ones. Hospitals are built with the input of private capital and project management. An internal market improves responsiveness to patients’ needs. All this is ultimately underwritten and financed by the state from taxation. The problem with the NHS is not “privatisation”, it’s the fact it was ever nationalised in the first place. Like the Porsche 911, the NHS’s engine is in a fundamentally wrong place (Way out behind the rear axle, on Whitehall, rather than somewhere between the patient and the GP), but with decades of development and tinkering, that design flaw is being been overcome, as the engine is moved closer to where it should be. The NHS will remain Free at the point of use, just as the Porsche keeps its shape, but however good they are now, no-one’s copied the underlying design of either.

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Obesity and the Daily Mail

The Daily Mail’s editor may or may not have been exhorted to “give them something to hate every day” by its proprietor, Lord Northcliffe, but today, the subject of the hate is fat people. Apparently 12,000 people are on disability benefit because of “metabolic disease”, which the daily mail has taken as a proxy for “too fat to work” despite the fact not all the cases of diabetes will be due to blubber.

In a population of 70,000,000, 12,000 people is less than 0.02%. This really isn’t very many, and some of whom will be ill without being fat. Obesity costs the NHS £9bn a year? I doubt that too. I suspect the Mail has just asked what heart disease, Diabetes and so forth costs the NHS and assumed that’s all Obesity. In any case, in an NHS budget of £115bn, this too isn’t that big a number. But the fat, like smokers die younger, costing the country less in pensions and die quicker, meaning they cost less the NHS less than a healthy person in their final years.

Having lied with statistics and asked the readers to blame the deficit and the breakdown of the NHS on salad-dodgers, we are then asked to blame the food industry. A nice, simple daily mail morality tale. Wicked businesses, allied to weak, stupid, gluttunous fat people (defined as ‘people fatter than you’) are costing YOU money. If only THEY could be made to behave, the problem would go away. Having waded through the article, I suspect most readers have got a very inaccurate impression as to the actual size of the problem of people who’re “too fat to work”, and the root causes of obesity.

The problem is obesity is not about sugary drinks or high calorie ready meals, or fast food. It’s about a vast number of factors, most of which are not yet fully understood. Obesity has a genetic component. Some people have a greater propensity to put down fat than others. It has an environmental component: it’s easier to eat healthily if you live in a relatively affluent area. Poor kids are less likely to have access to safe outdoor play. It has a life-style component. Active people don’t tend to get fat.

But ultimately the problem is a combination of readily available high calorie food, and jobs that don’t burn it off. We all have the appetite of a hunter-gatherer who roams miles in search of food, but we sit behind desks. Our jobs are stressful, which raises cortisol levels. Driving is stressful too. Yet our bodies do not get to make the “fight or flight” for which they are prepared, and instead lay down fat. And as our jobs get ever more sedentary, and ever more labour-saving devices are employed in the home, we will burn ever fewer calories as we move about.

There is a moral component to getting fat. It is possible to look in the mirror and say “I’m getting fat, and I must do something about it”. But if you’re fat as a 10 year-old, it’s really not your fault. All studies show losing weight, and keeping it off is hard-to-impossible without lifestyle changes. Raising your activity levels isn’t easy either. Having got fat, ‘going for a run’ puts an intolerable burden on knees and backs. Thighs will rub together and bleed. The extra activity needed to burn off the blubber is simply agony for the obese. ‘Take daily exercise’ isn’t that simple.

It seems that at some point in development, your body decides how much fat it wants to carry, and this happens quite young. Most people get steadily fatter as they get older, and research suggests a bit of middle-aged spread isn’t necessarily a bad thing. It’s certainly better than being underweight. What matters far more than Body Mass Index is how active you are. People who take regular, moderate exercise are much, much healthier than those who don’t, even if they carry a few extra pounds.

This is why active transport – cycling and walking is so important. It will allow an increase in activity, without requiring the willpower to “go for a run”. A bicycle is a labour saving device, relative to walking, and in any sensible society, should be the first choice of transport for journeys under a couple of miles. But as Daily Mail readers are viciously opposed to bicycles, as the transport of people they don’t understand, the one thing that might reduce obesity will not be supported.

So the Daily Mail plays its vicious little morality play, feeding idiots’ righteous indignation by lying with statistics, in order to fuel animus against THEM. All the while, being a significant part of the problem itself. The Daily Mail is a hateful little rag, which leaves its readers a little less informed, every single day.

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Bracken’s Law and the NHS

Everyone knows Godwin’s law:

“As an online discussion grows longer, the probability of a comparison involving Nazis or Hitler approaches 1”. 

Some then suggest the law says 

“and whoever does so, has lost the argument”.

In discussing healthcare, I propose this law: 

“The longer any discussion about the NHS goes on, the closer the probability a spurious invocation of the US system of healthcare gets to one, and whoever does so has lost the argument”.

If you are reading this post, there is a good chance you’ve been sent this way, by me, during an exchange on Twitter. Before we go further, let’s be clear what I actually believe on the subject. 
  1. I am in favour of free(ish) at the point of delivery services.  By Free(ish) I don’t rule out the likes of Prescription charges and nominal charges to see a GP or charges for missed appointments, which seem like reasonable demand-management to me.
  2. I am in favour of Tax Payer funding of healthcare. I cannot see any practical difference between compulsory insurance and tax-payer funding. Insurance is just risk-pooling. Taxpayer funding is a bigger risk pool. 
  3. The NHS isn’t very good. And it isn’t very good principally because of its vastness and consequent bureaucracy, not because of its funding mechanism.
  4. More competition is necessary. And competition isn’t about firms competing for government monopolies, that’s mere crony capitalism, a kind of cargo-cult market that achieves nothing a market should do, and simply allows firms to profit from state monopolies. Competition means the funds following the patient, with the GP as gatekeeper and advisor to the patient.
So, if you accuse me of favouring insurance companies, or wanting companies profiteering, you’re arguing against a straw man. 
In international comparisons, the NHS often comes out well. The recent study by the commonwealth fund, whose report led the Guardian to proclaim the “NHS is the World’s Best Healthcare System“. However that is using patient-satisfaction survey data, and measures of cost. The Guardian’s own report contains the remarkable passage: 

The only serious black mark against the NHS was its poor record on keeping people alive. On a composite “healthy lives” score, which includes deaths among infants and patients who would have survived had they received timely and effective healthcare, the UK came 10th.

Basically, the commonwealth fund finds the UK healthcare system cheap. This is because private-sector, insurance-based provision is effectively banned in the UK as co-payments are not allowed. You cannot top-up your healthcare. We spend about the same as most of Europe on state healthcare, without asking people to top up through insurance, as most of Europe do. Thus we have barely adequate healthcare, but which is very inexpensive. This is why the UK scores well on “efficiency”.

Ease of access and equality are based on Patient-reported surveys. And as the NHS is healthcare in the mind of most Britons, and such surveys are skewed towards patients who, ahem, survived, then I can’t see such data’s all that reliable. It’s just a reflection of the almost mythical, religious support Britons have been brainwashed into giving what politicians STILL call “the envy of the World“.

Where the data does stack up is the NHS’s excellence in dealing with Chronic conditions. Here the ability to marshall resources and the bureaucracy to back it up helps. The problem in the NHS is the customer facing bit – particularly diagnosis and A&E. This is where patient choice and a functioning market with competing providers would make all the difference. Once in the machine, the NHS functions as a first-world healthcare system. Getting into the machine requires sharp elbows, luck and knowledge. Delays in getting into the machine are behind the NHS’s poor record in combating cancer in particular. There is very little immediate punishment for failure, which is too easily covered up; South Stafford Hospital for example.

The sooner the NHS starts treating its patients as customers for whose business they compete, not an irritating cost to be borne by the long-suffering nurses, the sooner the NHS will warrant the plaudits lefties so desperately want to give it.

But in prioritising “efficiency” over “keeping people alive” in order to give your pre-chosen answer (a state-run system) a big gold star is a bit desperate, and nothing short of policy-based evidence making. Or as I prefer to put it, immoderately, LYING.

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Privatised Health services.

This is a tale of two sets of injections. Two on the NHS, for a fee, of £120, and a two in the private sector which cost £145.
The price points are near enough to think this isn’t about “you get what you pay for”, especially as I’m paying twice for my NHS “service”.
The private sector offered appointments more or less at my convenience. When I arrived for my appointment, the nurse was already getting prepared. I was early, but only waited about 2 minutes before I was taken into a room, taken through a questionnaire, and given my innoculations. The whole process took 15 minutes.
Because it was so quick, I was early for my NHS appointment. Nevertheless I was seen 15 minutes late. The nurse had no clue what I was doing or why. Despite the fact the NHS injections were the second in a course of 2 and 3 respectively, I had to go through an enourmous faff. The nurse spent 10 minutes wandering around asking whether I could be injected into my thigh, because I’d already had an injection earlier in my upper arm, a question surely she’d be qualified to answer.
And trying to book an appointment for the final injection in 4 weeks’ time was definitely about their convenience, not mine. The whole process took 50 minutes, and I was in the clinic for over an hour.
Anyone who thinks there aren’t efficiencies in the NHS to be had that would be achieved by more marketisation, is an idiot.

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On BMI, Smoking and Physical Fitness

Quite often amongst libertarians there’s a ‘drinkin’ smokin’ and ahm-a-gonna-continue-coz-you-ain’t-gonna-stop-me attitude’. Because the BMA advises something, some libertarians willfully do the opposite.

I entirely understand the wish to blow the smoke of an unfiltered Senior Service into the face of any public-health busybodies I see. There’s enormous glee for example in the reporting of the meta-study released recently which suggested the slightly overweight live longer than those in the “healthy” BMI range. This is something that I thought was long-known. The VERY underweight live the longest, as near-starvation prevents some damage caused by free-radicals in cells during metabolism. We all know what healthy people look like, but it’s apparently just as healthy to carry a bit more weight as you age. The findings of the report are not surprising.

BMI was invented in the 19th century, when people were calorie constrained, cars hadn’t been invented and everyone was skinny, worked in manual labour, and walked, rode, or cycled everywhere. “Normal” was different back then. However BMI’s not a bad rule of thumb. Normal these days is a bit overweight, and certainly not doing the exercise or suffering the occasional bout of hunger for which nature designed us.

The key is muscle. If you’re carrying muscle, and we carry a lot more of it than our great-grandparents, you’re active, a bit of extra fat isn’t a problem for your body to bear, but big muscles are heavy and so push you into “overweight” on the BMI.  If you’re built like a jockey’s whip, you’re completely sedentary and have an unhealthy lifestyle, you can have quite a high fat percentage and a low BMI as fatty tissue is less dense than muscle. Catwalk models have bad skin from make-up and a diet of cocaine, bulimic vomiting and fizzy white wine yet fall at or below the healthy range. Most professional Rugby Players, on the other hand are “obese” thanks to their large muscle mass. There’s no doubt which looks more healthy (without makeup).

Make-up can be used to disguise an unhealthy lifestyle and unhealthy BMI.

I’ve never been a heavy smoker, but I have recently got into the habit of enjoying a cigarette or two in the evenings when I get home from work. I have for one reason or another been without a bicycle for much of the last few months. I’ve been drinking nearly every day and eating too much. I’ve not been taking exercise. I’ve got a bit fat. My BMI is 25.6. Very slightly over the border into overweight. And that’s probably about right. Fat, but not dangerously so. It certainly doesn’t help anyone who isn’t a professional athlete to see the BMI and think “Overweight is good”, because it isn’t.

Just a week of running and swimming each evening, and giving up the cancer-sticks entirely and cutting down the booze, I feel great. The first run was horrible. The second wasn’t much better. But on the third, I felt I’d cleared out some crap from the lungs and I enjoyed it. From previous bouts of fitness fanaticism I find at first you hate it. Then you start to enjoy it. Then you start to need it.

What interests me in the epidemiology is to what extent is the huge health penalty with which smoking is correlated to do with the harms of smoking itself, and how much is to do with the fact that people who smoke are also less likely to make healthy choices with exercise and food? It’s my belief that for day to day well-being, being sedentary is worse than light smoking. If you take regular exercise, I suspect you can get away with a fag with your pint afterwards. But I’m not a doctor, nor am I a public health epidemiologist. I don’t know.

Just because some nannying doctor tells you something is good or bad for you, doesn’t mean he’s wrong. Feeling hungover, lethargic and listless is not as good as feeling bright, cheerful and healthy. Pretty girls prefer men with toned muscles. You’re better in the sack with those pretty girls (or even your significant other) if you take some exercise. Fit people suffer less depression and have higher self-reported happiness. You’ll live longer and so generate more personal utility from the taxes you pay as you burden the NHS with your longer senescence. You sleep better after exercise, and are so more productive when you get up. Live fast, die young? Sod that. Live fast, die old, that’s my motto.

I’ve just started an exercise regime. I’m not just happy about it, I’m smug about it too. Hate me.

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The NHS is being Privatised? Ooh Goody!

Comment in moderation (unlikely to be published) at this post:

Ooh Goody. They’re privatising the NHS? Maybe I won’t die unnecessarily of Cancer, or wait four hours because no-one can be bothered to see me with a dislocated shoulder, until the target time runs out.

Excellent. It will still be free at the point of delivery, so why, apart from vested producer interest and left-wing prejudice, would you oppose private, but state funded provision? 


I note with interest you got the usual left-wing digs at “corporations” like Vodafone. I’m glad you admit you’re against efficiency and don’t want skilled nurses to offer simple services, but would rather ensure that someone wait to see a doctor. I had a bike accident outside my GPs surgery. The Doctor refused to apply a steristrip, and demanded I go to A&E 10 miles away. (and wait 4 hours). 

This is an organisation run for bureaucratic convenience, not that of patients, infused top to bottom with the “more than my job’s worth” attitude of the public-sector

The NHS is NOT the “envy of the world”. It’s a mediocre service 17th best despite the UK being 11th richest per capita. The NHS underperforms and is in desperate need of shaking up, if not breaking up. 


With any luck the NHS will be privatised. And I will enjoy watching the wailing and gnashing of teeth from people who have been wrong on absolutely everything else, and are wrong on this too.

Of course it’s not just people not being patched up and sent on their way efficiently. It’s an entire culture of bureaucracy. I’ve no doubt bits of the NHS are world-class. But the shop-window walk-in & A&E is grotesquely inefficient, and that’s all I’ve seen first hand. And I can compare it against the similar systems in France, Germany, Canada and Norway, all of whom manage to achieve Triage without demanding everyone who isn’t dying always waits 4 hours.

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Professional?

What does “professional” mean? The dictionary defines it broadly as “doing something for money” but in a more narrow sense, being skilled. Even narrower is being part of a “profession” such as Doctors and Lawyers where it takes many years to acquire knowledge of the arcana. A professional is more likely to be self-employed and so have little job-security. The returns can be enormous, if they’re good, but part of professional status is the willingness to forgo employment rights.

People who have skills tend to be well paid. Their experience is vital, and they are not easily replaced. Professionals tend to find this best if they’re self-regulated. It’s in their interests to collectively policed and access to the profession restricted to keep individual rewards up. Setting high standards works for both the existing members of a profession.
Trades, on the otherhand are easier to acquire. It’s easier to find a plumber than a doctor. This means even highly skilled people can be replaced, if an employer is willing to train another hand. For this reason, Trades unions formed. Collective bargaining was the best way in the absense of any individual being vital to a company, to secure higher wages, from employers.
So. Are Teachers professional? Because they act as if they’re a trade. If you want Job protection, you can’t have high pay. You can’t go on strike, and still call yourself professional. If you want to make rubbish teachers hard to get rid of, you all pay for it with low wages. If you want us to treat you as professional, start getting rid of the lousy teachers, poisoning kids against education, and start competing with each other to deliver, and be rewarded for excellence. That’s what “professional” means.
Free schools, perhaps this Government’s most compelling policy, are a means to deliver the ideal of a professional teaching profession. They will, of course, be resisted in this by the Trades Unions, of the NAS/UWT, and NUT. As schools gain independence over hiring and firing from the collective of the Local Education Authority (or whatever these bodies are called this week), bad teachers will rapidly find it cold outside the warm embrace of a protective union, will seek out  the safer jobs in lower-achieving schools. Good teachers will thrive, and see their pay improve outside the restrictive pay-scales of local bureaucracy. I can see a situation where the worst schools employ the TUC-affiliated teachers, and the good schools’ teachers are members of Voice. No-one has any sympathy for the teachers themselves, because the focus should be entirely on the outcome for students. By all means pay reward excellence but cut the dross, and free schools have everywhere worked in the interests of students.
Trades unions used to be workers’ mutual support amongst people who were ultimately replaceable – agricultural Labourers like the Tolpuddle Martyrs or industrial workers like the miners, whose only power to better their lot could be found collectively. These jobs have largely vanished, Trades Unions having killed the profitability of Britain’s remaining mass-employment industries, and hastened their demise. So now Unions exist almost exclusively in the public sector, where they exploit the lack of commercial pressures to secure perks for their members.
Ultimately, the trades union, acting on behalf of people, Doctors, Teachers, whom we expect to be professional, upsets the public more than when trades unions act on behalf of lower skilled, and lower paid people like nurses. It feels abusive – the already well-off and powerful demanding perks with blackmail, paid for from the wages of people, most of whom earn less. 
By introducing markets, even ones in the public-sector where the state pays all the bills WILL drive up standards, and not only by the usual mechanisms of customer choice, but also by providing mechanisms to reward successful professionals.
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Guest Post from Bendy Girl

If you’ve ever wondered why I hate bureaucracy, this post by BendyGirl, cross-posted from her blog Benefit Scrounging Scum illustrates what happens when the Broken NHS bureaucracy and the even more broken Welfare state bureaucracy collide: People who are desperately trying to do the right thing fall into inconvenient boxes, and don’t get what they need.

Today I deathwalked a longer distance than I’ve been able to manage in 12 months. To say I was jubilant when I arrived home is understating the case, ecstacy would be closer to the truth after a year of injury after injury, hideous Oxycontin withdrawal and many other setbacks, just to get back to a distance I could acheive without as much difficulty 18 months ago is incredible. I’ve only been home half an hour and that sense of excitement has been whipped from underneath me by a phone call from wheelchair services. I’ve written about this dilemma in the past, the rules governing wheelchair provision on the NHS are so surreal Dali would have shaken his head in bewilderment and wandered off to find something not in the ‘too hard to think about’ box.
My Occupational Therapist at the Wheelchair Centre is a lovely lady and excellent OT. She’s known me since I was in nappies and is very saddened by the situation I’m facing, but her hands are tied by the national rules governing wheelchair provision.The rules state that no-one will be supplied a power chair on the NHS which is capable of being used outdoors until they have used a powerchair indoors for a minimum of six months. A rule, which might just possibly seem sensible in abstract to politicians with no understanding of disability or it’s reluctance to be shoehorned into bureaucratic boxes but not to anyone else, particularly not the people falling outside of those boxes and missing out on vital services and equipment. Living in a very small one bedroom flat with standard sized doorways I could maybe just about get a power wheelchair into my home, but it would only be possible because I’m physically so petite. Given that Ehlers Danlos Syndrome affects the entire body, the demands of getting into and out of a powerchair everytime I needed to move to another part of the flat would be equal to, if not worse than the demands of staggering around the flat, I’d just be trading one set of dislocations for another, equally painful and degenerative set. The additional downside of using a wheelchair indoors would of course be a further, rapid deterioration in my overall condition, leading to more dislocations, more pain and more disability. Remaining a part time wheelchair user is optimum for my physical and mental health, the overall cost to the NHS and the benefits bill, but does not fit within the rules of the system.

BendyGirl sitting in her attendant wheelchair

I have an attendant wheelchair, the kind that can only be used if you have someone to push you. It’s great, but means I can’t go anywhere to use it unless I can find someone who’s not busy and is both willing and able to push me around. It’s also difficult socially as typically people walk or wheel side by side, and being in an attendant chair prevents that. I suspect it’s one reason why small children get so fractious in pushchairs, being unable to see or properly speak to the person pushing you is conducive only to tantrums.
I am not entitled to a standard manual wheelchair as the system recognises that it would be dangerous for me to use one. I could attempt to persuade my GP to risk his professional reputation and a future negligence action by getting him to sign me as fit to use a self propelled wheelchair, but he should no more be put in that position than I should be put in the position of having to lie and say I would use a wheelchair full time indoors. If my GP were willing to claim that I’m capable of using a wheelchair I’m very obviously not, then I could obtain an NHS voucher and purchase a power assisted lightweight wheelchair myself, making up the rest of the cost out of my benefits. That is unlikely to happen, partly because my GP wouldn’t deem me fit to use a self propel wheelchair and partly because the kind of lightweight, power assisted wheelchair I would need would be cost prohibitive.
It is possible to use High Rate Mobility Allowance to purchase a powered wheelchair…but not if you’re already using that HRM to fund a car. I am currently not using my HRM for either, it goes into general living/travel expenses as I already had a car, but as I need to change my car to a more accessible vehicle, assuming there are no problems with my DLA reapplication the HRM will be committed fully to a vehicle leaving no money for a wheelchair.
So, once again I’m back at square one. There is absolutely no doubt that an appropriate wheelchair would make it more likely for me to obtain paid work. Access to work is the scheme set up to provide specialist equipment to disabled people to enable them to work. Unfortunately one needs an actual job, or concrete job offer to use access to work, and I have neither. The 8 hours a week I’ll be doing from my sofa on a voluntary basis absolutely won’t count.
I have three options. One; the situation remains as it is now, hopefully improved if BendyBus ever gets it’s act together enough to leave the care of mechanics. Two; I lie. To my GP, to my consultants, to the wheelchair centre and claim I will use a power wheelchair full time indoors for six months so that they eventually consider me for a powerchair which works both outdoors and indoors. Three; I try to navigate the maze of charities and beg for funding, unlikely to be secured as EDS is not important enough a condition to have rich and powerful charitable representation.
The years of not being diagnosed and accused of being a liar have left me with a stubborn determination to cling to the truth at all costs. I am just not willing to put myself in a position where I have to lie to the clinicians caring for me, even if that lie weren’t completely detrimental to all concerned. I don’t have the energy or the mental strength I’d need to go cap in hand to a round of charities, which leaves option one as the only choice.More than three years on…I’m still missing out.

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