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
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
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
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
**It's called taking the piss to make your point people!