Tuesday, April 24, 2012

"Oh! You're in your buggy now"

I love the NHS. I'd better get that bit in quickly before someone accuses me of being selfish, spoilt and not being grateful for free healthcare. I am definitely the grateful bit, and very definitely not in favour of the current Coalition car crash style of 'reform' but oh dear god does the NHS need reform.

I had a hospital appointment this morning with a new consultant. Given the many years and many ways I've heard the popular diagnosis of 'its all in your head' prior to being diagnosed with a very definitely not in my head genetic collagen disorder, it is safe to say new doctors make me anxious. Hospitals, nurses and early mornings also make me anxious so I was grumpy and stressed before the appointment and very probably pre-disposed to tantrums. Spotting a doctor who had previously been so convinced I'd made up my diagnosis of EDS that he decided I'd faked the official diagnosis letter included with my notes stressed me out further, even though I knew I wasn't seeing him. Listening to an elderly, disabled man's welfare woes in the waiting room was also a joy. Especially the bit where he told me that people who get full benefits get all the services they need. I rather icily informed him that I receive full benefits but share the exact same challenges he faces in accessing social care support and inwardly wept at the outstanding political success of the 'saint v's scrounger' rhetoric.

You get the point. I am a right narky nark today. It is entirely possible that I would have sulked regardless of the outcome of this appointment, but in a generous mood the heartsink doctor* donated several reasons for me to snark at. Again, not to his face. I find passive aggressive icy politeness much more effective than shouting. That is only partly because I can't produce more than a croak.

After a brief history and examination Dr Heartsink informed me that he didn't think there was anything wrong with me that wasn't me. Um...ohhhhkay. I'm not entirely sure what that was supposed to mean but after encyclopeadic experience of the ways doctors can say 'it's all in your head' I'm going with some form of 'its all in your head'. A more generous interpretation would be that there's nothing wrong with you aside from the problems Ehlers Danlos Syndrome causes but I'm not feeling generous. I expect doctors with many years experience to be able to use words like 'genetic' or 'collagen' if that is what they mean.

At this point I was distinctly unimpressed with Dr Heartsink, who proceeded to add to my woes by re-ordering the barium swallow I thought I'd got out of when ENT ordered it by allowing respiratory to do a bronchoscopy. Yes, I know the two tests are completely unrelated and show totally different things but that is not the point. They are all tests I've had before, that haven't shown anything up and have no desire to have again. Mostly because having such tests won't make it onto anyone's bucket list, but partly because I've been through this process many times and my heart sinks at the NHS spending money on it all over again. I am also to have an ultra-sound because the one they did last year is out of date now. There are valid medical reasons for repeating these tests I'm sure...but I'm too busy throwing my toys out  and don't want to know them! 

Assuming the tests don't show up anything nasty then apparently my GP will be able to take it from there and I won't have to go back to see Dr Heartsink. This pleased me so much that I didn't feel like explaining to Dr Heartsink that my GP is a lovely chap, but 'taking it from there' is not his forte. Nor did I point out that referring a patient to a dietician is only going to be of benefit if said patient has the ability to follow that dietary advice. It tends to be awfully practical and involve skills I do not possess. Like the functional ability to prepare and cook food. These however are not issues for a consultant to address, or even something that they would consider. The dietician will scratch her head quite a bit, wonder if getting social services in might help, then dump the problem back on me...hopefully not having taken it upon herself to actually contact social services as their input can only make the situation worse and the only answer any of them will come up with is 'ready meals'. Its that kind of healthy eating that the new Personal Indepdence Payment was predicated upon. So people like me who've managed to avoid some of these issues by being able to use money from Disability Living Allowance to buy more nutritionally balanced ready prepared food won't be able to do that any more. Instead we'll bounce from GP, to consultant, to dietician, to Occupational Therapist probably via Social Services and back round again while everyone mumbles about it not being their area, oh and the cuts, and the patient doesn't get fed. I have learnt this lesson well and know the choice is usually between eating food that isn't necessarily nutritionally the ideal option for me or not eating because I can't prepare it for myself.

Fortunately for all concerned I kept this stream of stroppy consciousness to myself, thanked the doctor for his time and left. I was given forms for an ECG and blood tests, then the nurse added that I'd be called in for a chest x-ray. At that point the desire not to glow in the dark kicked in and I queried whether I had to have a chest x-ray only a month after the last chest x-ray. I'd got onto my mobility scooter by this point, so the nurse asked me to reverse back up the corridor so Dr Heartsink could decide about the x-ray. Looking up from his desk Dr Heartsink exclaimed "Oh! You're in your buggy now!" which to date is the most interesting way I've heard a doctor describe a mobility scooter. Although I am a bit of a short arse it's not as if I've got pram toys hanging from it which could lead to that kind of understandable confusion.

 Whilst I was waiting for ECG and bloods the receptionist came to find me to check whether I am attending both of the hospital appointments I'm scheduled for on thursday afternoon. After confirming that yes I am, yes they are both at different hospitals and yes I had tried to change the date we got to the point which was how to transport my notes between the two sites when the appointments are only 2 hours apart. I suggested that perhaps I could take the notes with me when being driven from the first to second appointment but that is not allowed as I am a patient. I might after all eat my notes for something to do in the car. Or read them. The possibilities of what I could do with a pile of notes entirely about myself, weighing almost as much as myself are frankly endless. So instead a nice man with a van will have to drive from one hospital to the other to collect the notes and we'll all hope they turn up at either or both consultants appointments...cos to be fair to the doctors, running a consultation without any notes is a bit tricky. Not to mention potentially wasteful of money or any such practical considerations.

After a jolly time of some more blood taking and 'just lift your top up now sweetheart'** I had to go and deal with the car park paying machine...which involved having to block the main corridor of a hospital because clearly no-one realised people using mobility aids take up more room. Still snarking to myself I managed to hoist the scooter and got ready to dislocate my shoulder enough to be able to reach the ticket machine from the car. A very sweet old lady was in front of me getting quite stressed about the ticket machine. Which she'd broken. She'd also called for help, but there was no sign of it other than a growing queue of cars. Most of the drivers sat patiently realising what had happened and one or two male drivers appeared to squint at the machine and mumble in that practical man manner. The old ladies stress levels were visibly rising with every additional car, but it was the male driver right at the back of the queue who got out to scream and shout which seemed to finish her off. The helpful men went off to be helpful and intervene between the old lady and shouting man who continued to rant while the old lady reversed her car up and drove over the pavement to get around the barrier. At which point the security guards arrived and blamed me for breaking the machine!

All in all its been an awsome day so far. And did I mention how much I love the NHS......

*Heartsink doctor is a wonderful description. I'd take credit for it but I blatantly stole it from Hossylass
**The nurse...not random builders!


Anonymous said...

Small comfort but i know exactly how you feel/what you say. I am going to 'share' this as it kinda says what my brain no longer allows my mouth to say,succinctly and concisely...x Spotted this too late to catch you on Radio 5,but will catch it online,hopefully.

Thank you for letting us 'in your head(for 40yrs)'' oopppsss,you actually have an actual,genuine Disorder,syndrome......,people feel less alone. Hugs

flashsays.com said...

Actually my dietician was very helpful. She made sure I got prescribed Complan Shakes for when I'm too tired to make a meal, or to eat safely. She gave me advice about items to have in the house as snacks when I'm in bed too. And told me that fizzy drinks leach calcium from bones so people with EDS should cut down on fizzy drinks. Everything she suggested was relevant and worked within my capabilities. So I suggest you meet the dietician with an open mind - you never know, they might be helpful & competent.

sad times said...

Always a stress a hossi visit every aspect about it. Picking up on the bit where you had a chat with gentleman I think the gov, media have been more than successful at 'saint and scrongers bit' as simply when you get so ill or disabled you get so sick whatever you circumstance if you NEED state help it is a case of 'We're all in it together' at the end of the day we are all in the same boat....unlike sadly, disgracefully portrayed, we Unfortunately people will never understand until their in the position or talk to some one in it! Off course if you've got billions in the bank you don't have to ask for state assistance but your still live with being sick or disabled.
Not good to be sick or disabled and all the invisible things that come with it.

sad times said...

One of the invisible things that come with it is the inward weeping.............l

Chris Johnstone said...

I have just found your blog (Thanks to and congrats on the Orwell prize shortlisting). Your postings are just wonderful and awful. I laugh and cry. I am a GP and I hear this all the time. They are not bad people in the hospital, but they are just not designed for really ill, complicated people anymore.They used to be, when your consultant was as good as your GP. If you don't fit into their simple little boxes they lose control. I hope you have a good GP and have a good laugh and don't weep too often.
Good luck

Veronica Foale said...

Head, meet desk. Or floor, you know, whichever ends up being easier to reach.

Still here, still reading. xxx

Anonymous said...

Urgh. Sounds like a dire day.

Obviously the "buggy" comment very irritating, 'specially on a bad day... but to be fair to Dr H he's a consultant and thus more likely than not a golfer. So he may have been thinking of a golf buggy rather than a baby buggy. Of course, he may not have been, he may just be a complete idiot, but it might be easier for you to meet him with equanimity another time, if you have to, if you assume it was a mildly tactless use of a homonym rather than the really ludicrous piece of idiocy suggested by your first interpretation?

Lisa said...

I've encountered several people who use mobility scooters and call them "buggies".

For them infantilisation is less embarrassing than the social shame of being disabled. Shame about being disabled being the reason they got a "buggy" rather than a wheelchair in the first place.

Anonymous said...

I don't see the problem with the word buggy, but maybe it's a generational thing or a geographical thing.

To me buggy for pram/pushchair is a new and foreign use and there are all sorts of 'grown up' buggies to be found everywhere from beaches to airports to golf courses and I remember watching goggle-eyed at the first moon buggy.

Before you get offended, be sure the person using it comes from the same generation and background as you do and makes the same assumptions as you do about the primary meaning of the word.

sad times said...

Get real 'n' get an education. Really?? Is this toooooooo much!

sad times said...

Obvious generation thing going on. Sos. Let's respect.

hossylass said...

Its a real shame it was a nurse and not random builders...

Come the revolution even builders will realise that a wheelchair or (God forbid) a "buggy" isn't a exemption from being devilishly attractive and very fuckable.

P.S. Sweet old ladies are devious swines. I intend to be one myself one day.