Calling all UK based disabled bloggers

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Can we fix it?






Last week saw my six monthly check up at Freak Clinic. Much is being said in the medical blogosphere about the state of the NHS, but seemingly little of that is originating from patients. Proper patients I mean, not the kind who are paid to write by the mainstream media about how GP's are not needed in the age of Dr Google. That's probably because proper patients know far too much about the real problems facing the NHS, so like the medical bloggers no-one wants to listen to us.

In common with most suburban areas public transport is not much of a feature in my part of the world. Even were it accessible to me, it is cheaper to drive. Easier too, apart from the parking. There is a nice park and ride service provided for free by the hospital. It's a great idea, except it's not exactly accessible either, and particularly not at the moment as the drop down step to alight the bus is broken*. The fact that you can't get a bus back to the park part after about 4.30pm is also a bit of a problem. It's close enough to walk, but only if you're fit and able. Funny thing about hospitals though, is that they are mostly needed by those not fit or able. So, driving is the only realistic option. Like many hospitals there is a charge for the car park. It's £2, which for a one off visit like I make every few months seems quite reasonable. It's not if you have to go every day, or twice a day like many people do, then it adds up PDQ. The hospital must have money to burn though as despite the additional revenue from all those £2 either the machines are broken or the car park staff are too busy doubling up as porters and security guards for the car park to be manned. No attendants+no barrier=no charge. I often wonder how much the barrier cost to install, and how many parking spaces were taken away to make room for it.

There are some disabled bays right outside the main entrance which are exempt from charging, they are always full though and people queue waiting for one of the consultantssomeone to leave. This is the same hospital which saw fit to block off all the disabled bays bar one outside it's physio department for months last year when it parked a portable something or other there. There were numerous complaints but the Trust insisted they'd made provision for disabled people to park elsewhere. As they forgot, neglecteddidn't specify where elsewhere was it's safe to assume elsewhere didn't know either. It's also safe to assume that lack of parking may or may not have had a detrimental effect upon incapacitated patient's ability to attend their vital rehabilitative treatment and that inability to attend may or may not have had a beneficial effect upon the hospital's physiotherapy budget.

I spent 30+minutes driving round and round the car park trying to find a space, initially one that was within my walking distance, then just a space. Eventually I got lucky and found a disabled bay outside the shiny new fracture clinic. Which would've been fantastic if fracture clinic was anywhere near the main outpatients entrance and there wasn't a big flight of concrete steps in between the two.

I parked up, already late for my appointment and gritted my teeth for the walk. Once I got to the concrete staircase I spotted some nice young builder men with shiny yellow hats wandering about. I didn't ask but I'm fairly sure the nice young builder man I co-opted, forced, gave no other option to asked politely to help me up the stairs was called Bob. Far better looking though. Although I asked the nurse specialist getting into the lift next to the stairs if the lift went to the next floor, she told me it was going nowhere near main outpatients and closed the doors. Bob and I reached the top of the flight of stairs just as she got out next to us, grinned and said never mind. A sad example of dumbing down as a doctor would've been taking my blood pressure and calling for assistance with one glance.**

I still had another couple of hundred meters to trek to get to outpatients, and as I was so late I was trying to hurry. Big mistake.

By the time I actually arrived at Freak Clinic I was struggling to control my breathing and not far off greeting the floor face first. The outpatient nurses are lovely and know the regular attenders so one went to get me a drink of water while I tried to recover. I was shaking too much to get up and be weighed so the nurses left me to rest for 10 minutes or so before attempting to take my blood pressure. They were most concerned that despite the rest it hadn't gone back to normal but I'm used to the kind of autonomic nervous system dysfunction which can go hand in hand with EDS and huge swings in my blood pressure or pulse rate don't cause alarm unless it doesn't settle with rest. The nurse asked whether I'd prefer to see the consultant or registrar, and as I said that I thought the registrar would need to consult with the consultant I was taken in to see him after a few more minutes rest.

Unfortunately I was still shaking a great deal and not recovering too well. Dr FC asked what had caused the shaking but I was too fatigued to be able to give him a decent explanation. Particularly in the more severe cases of EDS, the high levels of laxity mean we tire very easily, because our muscles are weak and have to work incredibly hard just to carry out basic functions (digestion, breathing etc) they can respond poorly to exertion. In my case that means I may mentally be able to push myself hard enough to temporarily get through a situation but there will be physical consequences which may be quite severe. Once I've gone past the point my body can tolerate my muscles fatigue so much that I just shake and swing between shivering and sweating while I struggle to get control of my breathing.

Dr FC was concerned, but knowing me well he knew that autonomic nervous system problems are common in EDS. He wanted me to have some caffeine and sugar and so asked one of the nurses to make a very milky, very sweet coffee. As I was still shaking so badly when it arrived Dr FC very firmly told me there was no way I was getting my hands on the cup and held it up for me to drink from. I couldn't help but think of the irony of a highly paid NHS consultant providing the kind of care social services will not fund, or of the difference proper social care and funding would make to the NHS. Bizarrely for the public sector no-one had to fill in a form requesting the coffee, sugar, milk and health and safety assessment prior to application.

The government are trying very hard to persuade the public of the importance of 24/7 access to health care whilst keeping very quiet about the standard of that health care. One of their biggest plansmistakes is to create polyclinics and break the traditional doctor patient relationship. What they fail to realise is that not only are polyclinics completely surplus to requirements, but that they will also cost more money than the traditional doctor/patient model of health care. The Jobbing Doctor's posts on this subject are vital reading, but for anyone who's not convinced the real reason we must protect the doctor/patient relationship is for our own sakes.

The scenario I've described above has happened on many occasions and will continue to happen. Prior to my diagnosis of EDS I was either given a few sharp words about attention seeking or given further investigations. Expensive investigations, MRI scans for example. Fit, healthy young women are not supposed to be unwell in that manner for no good reason so tests are done, consultants consulted and referrals made. It all adds up very quickly in economic and personal terms. I expect it would have been what happened had Dr FC not known me well enough to realise this was a part of my overall condition. Imagine that multiplied by millions and millions. Now remove that doctor/patient relationship. Replace it with a polyclinic, and a health care professional who's never met you before and doesn't have the depth of education or training to attempt such difficult, potentially negligent, career ending, life threatening decisions. They insist on referring you for all those tests. Immediately. Just to be safe. It gets very expensive, very, very quickly and has no real benefit to anyone. Except those who stand to make financial gain from such situations, and they do not include the likes of you or me.




*A fact I was informed of by the nice volunteer man sent to push me back to my car and prevent me attempting to climb any more mountainsflights of stairs.
**It's called taking the piss to make your point people!

When the wind blows



Only the cat is howling louder than the wind which is currently preventing me from leaving the flat. The poor cat is howling because she's not pooped in at least 4 days and refuses to go near the enticing mackerel and lactulose combo I've left out for her. The wind has no such excuse. The cat can probably blame the chipsticks she stole from the bag for her current condition. Thank goodness for lovely vet student friends and the Bendy Mafia. Oh, and to the NHS for supplying the lactulose!

Being me I thought the easiest option was to use one of my 5ml measuring spoon to give Kitty#2 the correct dose*. I should probably have thought that through a little more carefully as I'm now going to be enjoying the benefits of mackerel flavoured lactulose for some time to come.

Anyway, as I can't get out of my front door and need to distract myself from the pungent lacto-mack aroma it's time to blog about the flat. I've only been here 2+ months!

The flat is great. Not having stairs is amazing. Not having a bath is a pain in the back, hip, rib, shoulderarse. Despite all my upset, even the coin meter is great. I can't actually turn the handle without dislocating something, but it means no monthly electricity bill and is excellent for increasing awareness of how much power you use on a daily basis.

Having a 17 year old boy living upstairs is not so amazing, although he is a paragon of virtue compared to the drunk middle aged man who was subletting there when I moved in. I'm sure none of my readers need this advice, but just in case....telling your neighbour you intend to drill holes in the floor so you can watch them in their bed is unlikely to win you their affections. Oh, and knocking on the door whilst pissed out of your mind to 'borrow a cup of sugar' probably won't endear you to them much more. No, not even if you invite them to share your dinner. The one you dropped all over the road weaving your drunked way home from the take out place. Oh, and while I'm at it, ex drunken neighbour man, see a doctor for both your belly and boy bits! Can anyone tell the soundproofing between the two flats is non existent?

So in addition to middle aged drunks and teenage boys I do have some more pleasant if less amusing sources of blog fodder living in the same road. Within a couple of days of my moving in many of the neighbours had introduced themselves, and my next door neighbours had spotted the wheelchair in the boot of my car and volunteered their children for the weekly wheelie bin duties. All the neighbours know Kitty#2 who apparently sits in the window gazing down on them with true feline regality. The many little girls living in the road absolutely love Kitty#2 and when the sun shines I can be found surrounded by a group of pre teens competing for both mine and the cats attention's. All very cute.

Deathwalking is harder but so much more fun here. I was close to the beach at the last place I lived, but not within my walkingstaggering distance. Smoking dope immediately before deathwalks has its benefits, but obviously rules out driving anywhere. The beach is so close I've currently got a pile of sand in my lap which somehow manages to get into the flat through closed double glazed windows. Whilst that's a disadvantage on days like today when I don't even dare stick my head out of the front door, its a wonderful luxury when it's not blowing a gale. I make hot chocolate and sit on the bench just a few feet away to watch the sunset.




* You can safely give a cat up to 5mls of lactulose every 12 hours, although they find the taste unpleasant**, however if they are 5+days w'out pooping consult vet, or if they still don't poop after lactulose. Mackerel non essential.
**Understatement of the year!

Disablist jokes

Yesterday comedian Jimmy Carr tweeted this remark

"Just doing my sound check in Glasgow and one of the tech team referred to the 'disabled seating area' as the 'cabbage patch'."

Which unsurprisingly has upset a few disabled peeps.

My reply was

"Assure him all disabled ppl r far 2 busy licking windows 2 be upset by such an impaired sense of humour" Which should really have read 'us crips' rather than disabled ppl!

There seems to have been a resurgence lately in disablist jokes by non disabled comedians. Leaving aside the fact that Jimmy Carr's remark isn't especially funny, I wonder why any public figure thinks it's acceptable to mock disabled people in a way they wouldn't dare to do with other minority groups.

Perhaps they are following this Labour campaign advisors example?


Updated. Via Dizzy President Obama on last night's Jay Leno show joked about how bad ten pin bowling is and described it as
"It's like-it was like the Special Olympics, or something"

So, the most powerful man in the world, himself a member of a repressed minority group sees fit to mock another repressed minority group who are still repressed. Thanks then Mr Obama, if that's your idea of change, then 'may god help us all'







"We hope it's chips, it's chips"

Inside my head I'm not disabled. Not even a bit of a spaz. No way, no how. My body is determined to ignore my brain in every possible way. Fortunately my brains idea that cartwheeling along the beach is a perfectly reasonable thing to do is vetoed by my body being too busy working on keeping me upright and moving in a forward(ish) motion.

In addition to my brain telling me I'm not disabled it also likes to tell me I've recovered so much I don't need to be lazing around on benefits. Given enough time anything becomes normal and I've forgotten what 'normal' people do with their time. I'm convinced there must be lots of time when your day is not filled with dropping things, dislocating, trying to pick them up and dislocating some more. Or spending two days cleaning your oven (really, really don't ask!)

So, as we all know by now I do stupid things. Frequently. Today's major stupid thing was trying to make myself a bacon butty. It was all going so well....I didn't cut myself sawing a gluten free muffin in half, nor did I end up with 7 halves. I only popped a finger out when I pushed the toaster down. Dislocations caused by standing, moving or such luxuries as breathing do not count in this story and if we all try to ignore them as much as I do they might even go away. Ssshhh, no shattering my illusions!

Ah yes, the bacon butty. I'll be honest, I did wonder if it was a good idea when I started...but only because the bacon was luminous green in parts. It was the last rasher though and I figured anything really nasty would be heated to niceness. Again, no shattering my illusions!

I checked on the bacon a couple of times whilst it was under the grill, but it looked quite anaemic so I decided it needed a few more minutes and wandered off into the lounge.

A moment or so later I thought I could hear a funny sort of sound. Sort of like a fizzing mixed with a cat howling. The cat was lying on the bed in a patch of sunlight looking like she'd got her cream. Except she was yowling. Probably objected to the smell, which was of burning fat and smouldering plastic.

There were flames shooting out of the grill when I got there. I wasn't thinking things through too well so pulled the grill halfway out while I tried to find something to throw on it, only to turn back around from the sink and see I'd carefully placed the flames just beneath the rubber oven seal which was giving off large amounts of black smoke and stinking. At which point the smoke alarm started blaring.

I managed to remember to soak a cloth in water, wring it out and throw it over the hot fat..only I didn't wring it out properly and nor was my aim up to much. Still, I did get the wet cloth on the burning bacon and only thought I'd have to end up calling the firemen out for a brief moment.

Then the doorbell went. I answered it to find a woman stood there with an envelope in her hand. The smoke alarm was still screaming and I had no confidence I'd put the fire out properly so I was perhaps a bit abrupt with her. She was from the council though so didn't care about niceties like my repeatedly telling her I had to go because the kitchen was on fire. Nor did she seem remotely bothered about the smoke alarm or screaming cat. No, she wanted my upstairs neighbour. Well, she was from the council.

I took the envelope from her, told her I'd put it through the door and said I really had to go. When I got back into the kitchen it was stinking and still smouldering. Being a sensible sort I rang Roland up, policemen, firemen s'all the same. Roland thought it was quite funny really...but did make sure I wasn't being barbequed before he laughed.

It was only once the fire was out and I realised the flaw in my plan was not having called the fire brigade out...I wasn't planning to have any more fires but I've left some chips in the oven now and it really does smell a bit......

Two days spent cleaning the oven while dislocating every joint in your body-insane/impressive....Setting your oven on fire and coating it with soot a week later- priceless!
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