Monday, March 30, 2009

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!


Old Reprobate said...

Another wonderful, wonderful post... thank you! That you go through what you have to go through and still retain a sense of humour shames those of us who get angry at little things. XXX

steph said...


My EDS problems, as you know, are very mild when compared to yours but I still see huge similarities in our abnormalities with mine being on a much lesser scale.

I too get huge swings in blood pressure and pulse and also in temperature control which has some medics confounded. I suspect that EDS'rs have to employ mind over matter so regularly that the abnormal physical consequences become the norm. I often find myself thinking that my pain is normal and am always amazed when I discover that this is not the case. Do we ever learn?

Dr FC sounds like a nice doc. The last time I visited my guy, he started eating After Eights during the consultation and wanted me to join him LOL

Fire Byrd said...

It makes me want to find hospital staff you behave in a thoughtless and callous way and punch them bloody hard in the face.
I can't understand why anyone works in the NHS unless they care, and that nurse prationer is a joke.
As you can tell I'm outraged by it. But I haven't lost track of the bigger point about polyclinics, I agree with you wholehearedly.
Still want to thunmp her though!

alhi said...

So true. Hope you're doing OK now.

Anonymous said...

The polyclinics thing is like the Park-n-Ride at the hospital... I'd get exactly the service I'd like from a polyclinic, I'm 26, fit, and have only been to see my GP in the last 5 years about contraception, the extra clinics at more work-friendly times would suit me fine.
Unfortunately it's those with more complicated needs who require continuity of care, people like BG and also of course old people who have some string of interacting conditions (and drugs). Sadly, most of the people who actually need the continuity of a GP haven't the spare energy to fight for it. So that's up to the rest of us.
My gran died earlier this year, mainly of being extremely old. She'd have died a good deal sooner (of being quite old and completely bloody-minded) but for the intervention of her excellent GP.

The Goldfish said...

I think Anonymous is spot-on. I think the trouble is that most of the "development" of the NHS is aimed people who are in reasonable health, who use these things occasionally and briefly. So they don't mind traveling for it and they don't mind seeing a different face. We are all being treated a little like consumers, with shiney new gimmicks and "choice", but well, you really don't have much choice if you need this level of service.

As for hospitals and their car parks, I could write a three-volume treatise... And why the flip don't those corridors have more places to sit down? It would be good for outpatients and for inpatients who are trying to build themselves up.

Hope this doesn't take too much of a toll on you.

Sarah said...

I think I can offer an explanation as to why there aren't seats in the corridors.
I once worked on a nursing home where the home manager was desperate for just that. The home was designed with a corridor round a courtyard garden that the residents would walk around. Some seats would have been great.
It was the fire brigade who said no. She had to invest significant time and effort in sourcing non flammable furnishings and proving that it would not cause an obstruction in the escape routes.
In the end we redesigned the corridors to give spaces that the seats could go in - an increase in construction cost and technicality for a basic comfort.

Anonymous said...

Some bus-stop style perching seats would presumably be better than nothing. And an old/not very mobile person sitting on a seat at the side of the corridor would be no more of a fire hazard than an old/not very mobile person staggering along in the middle of the corridor.. Might not be ideal, but a sight better than nothing and wouldn't prevent trolleys passing.
(Same anon as earlier)

wordsmith_for_hire said...

I'm no expert on hospital car parks - my disability means I'm no longer allowed to drive. Getting to a hospital can be difficult in other ways. Before I moved cities, I had a fantastic GP who was interested in epilepsy - rather than refer me to the city hospital's general neurology department, he sent me to see a consultant in the next town, where the the hospital there ran a specialist epilepsy clinic. The consultant I saw was fantastic but after 2 years I had to give him up. The town was only 16 miles away, but of course I couldn't drive there. The bus took 50 minutes and then I had to get a second bus from the town centre to the hospital. Or I could get the train, but there was mostly only one per hour (one every two hours mid-afternoon), plus a 15-minute walk from the station. All this meant that it would usually take me 3, sometimes 4 hours to do the round trip - just to see the consultant for 10 minutes. I'm self-employed, so it was massively disruptive for my working day and I was effectively losing half a day's pay too. Fortunately, my epilepsy is reasonably well-controlled and stable so it was easy to "drop off the list", with the understanding I'd get seen very quickly should my situation change and I needed him again. I'm now waiting to get on a local consultant's list in my new city - at least here, public transport is fairly good so I hope the travel will be less hassle in future. PS: I've experienced the Dutch polyclinic system - it's not too bad there as you mostly get continuity of care. But to my eye, it looks as though the government here is taking the worst aspects of such a system. It will be a disaster. I for one do not want to have to waste precious minutes of each visit explaining yet again, to yet another doctor, the exact ins and outs of my daily state.