h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

It's NHS incompetance.
Which, actually makes me very, very cross, when its affecting William. moreso than it does when its affected me...
So, few weeks back again to the GP, with his ears. "no infection".
less than a week ago to nurse at GP surgery. "no infection".
A few days back, to nurse at GP's, to get ear syringed, (explains to her, again about yellow gunk ear is producing). "no infection".
Today, he was very ill, actually started a bit, a couple days back, but really noticable today.
Phoned 111. Got 'appointment' at the walk in center.
Sat with W in walk in centre. for three hours after the appointment time.
had ap. saw who seemed a really good Dr, "yes that is an infection".
Prescribes antibiotic ear drops.
We then spend the rest of the day, phoning, and visiting every single pharmacy open in Cambridge on a Saturday.
None of them have it in stock..... however, its not until we phone the final pharmacy, that we find out why.
"Of course its not in stock; Its not made anymore"
OK. The database for prescribing drugs, the Drs are using is less accurate than the database of drugs the pharmacist can* prescribe, at ASDA supermarket.
8 hours, to not get a prescription.
now waiting for 111 to phone back; this isn't even very likely, as I'm not quite sure the girl on 111, understood what we were saying "yes, we have been to that apointmnet, yes, the Dr prescribed us a drug, but we can't get the drug, as it no longer exists".
and we won't make it to the meet
Just had midday lunch. at 4 PM.
a morning on a wild goose chase and an afternoon on the same chase, and, not a step closer to achieving anything at all.

111 phoned back. eventually. so W explained it again. twice. then to a second person
OK. the walk in center place, can't, apparently do electronic prescriptions; seeing as how they've already seen him, and scripted a med, they oughta just be able to do another script, for a med that is* still in existance, and wing it electronically to one of the pharmacys still open this late in the day. but, 'no' they can't.
Which is ing odd; I knwo for a fact they damn well can.
o, So, W has just set off, in the rain, to walk all the way back to the walk in center, to get a presription re-written, for a version of the antibiotic, that is still made, then he can walk over to the industrial park, where there are two p pharmacys open late, to see if one of them has the new script... if not, he'll walk home, and then have to go into the town center, where there is another pharmacy that opens late. hope everyones having fun at the meet... peole oughta be nearing the pub soon I guess

In otter news. I was wearing my new gingham dress last night; happened to notice, even though I've only had it a few weeks, its now feeling a little bit loose, sort of under the armpits, or across the back.... - bearing in mind its a tighter fitting dress than I'm used too, and is a size down from my useual size....
W thought.... if I've lost some 'inchs' round my back area (well I've certainly not lost them across the front of my chest ) that my purple jacket might fit so I tried it on.
perfect fit - I never got to wear this jacket last year.... W bought it for me for the wedding, and as I was still gaining weight then, from the steroids, it didn't really fit, and then I was ill on the wedding day, so I didn't wear it

Not that there is any serious discussion of actually fixing the US healthcare system by instituting some form of NHS style universal healthcare/socialized medicine, I feel we need to keep the republicans from ever hearing about your experiences. You're basically living in the version of socialized medicine that republicans try to scare us with.

yep, health care free at the point of delivery.... that bits fine... its just useless administration, and collapsing infrastructure in terms of the computer setups within the various differnt aspects that make up the 'health care system' as a whole... - wen it works smoothly, which (despite evidence to the contry) it often/useually does, then... it works... when it doesnt'.... it often really* doesn't work Plus; one of the always present problems, is just some Drs are a lot better than other Drs, and, hence, some Drs are just useless... - often now as evidence is finding this isn't necessarily the Drs fault; they're useless because of the IT, because of the rediculus high workload they have, or just down to total burnout of the Dr due to workload etc, meaning they're trying to work with patients, whilst they themselves are suffering from illness, often of a mental nature... there was a recent study that showed very high levels of mental stress in particular in oncology Drs, most of whom were scared to even seek medical treatment themselves, for fear of being taken off the register of Drs, and declaired unfit for work, instead, often they're turning to self-medicating, either with prescription o or illegal drugs... - again a lot of the problem comes back to administration, of a difernt kind; how differnt administrations, in terms of governments, have sucessively underfunded and under-supported the health system, effectively now as it turns out, in order to break it totally, so the government can turn round and say 'look its not working, lets privitise it, and it'll work better'..... The one medication I'm on ATM, that has transformed my life since the hormone problems, is the growth hormone.... were it not for the NHS I'd have to pay for that.... and there would be no way I could afford to buy it; I honestly think without the growth hormone I'd have killed myself by now, beyond the physical effects it has, it does a lot of weird stuf to one's brain... err... well not weird stuff, as such, just makes it work 'normally' (ac actual degree of normality may vary, and normality is context dependant) Mind; of course, had there not been an NHS, I'd have died back in 1993 anyhow, from the road traffic accident so I guess the cost of the GH woudln't be an issue

Well, william's now got the prescription! - currently walking over to the industrial units, where an out of town pharmacy is open; if they dont' have it; there is another pharmacy open, he'll pass on his way back here

The NHS has been growing like one of those huge funguses since 1948. If it wasn't a matter of lives and deaths, the only sensible thing to do would be to disband it and start again from scratch on the basis of today's technology. By the time it was set up again, of course, however, the technology would be out of date again.

A friend of mine worked for the NHS in the same office doing the same job for most of her working life. In that time she had 5 different "employers". Sorting out her pension was a nightmare.

But not recognising an infection (on two occasions!) when it obviously was one, is just bad doctoring and not really the fault of the NHS.

I am so sorry you can't make the meet. Hope everyone else has a great time and I look forward to hearing about it.

yeh, we're thinking of moving to a differnt GP surgery; its missed an ear infection William's had, on 2 previous occasions in the past, and for me, missed my bad throat infection which turned out to be tonsilitis; bad enough in anyone, but in me, an infection can drive me into adrenal crisis and kill me; they failed to spot the tonsilitis twice I seem to recall, or was in three times?; once I saw nurse, then I saw Dr, and I think maybe saw the nurse again; Mind, that occasion was even better; it was during chemotherapy; we ignored what the GP surgery said as I was in so much pain; went to A&E/emergency chemo 'bay', and the consultant there failed to diagnose it; then a Dr failed to diagnose it, and then another consultant failed to diagnose it; a nurse came in, just 'looked in the back of my mouth and said something I can't possibly write down, starting with the letter F, and then mentioing Doctors.... and put me on antibiotics.... I'd not have minded; but I kept mentioning tonsilitis to all the medical sorts I saw with the 'pain in my throat', as my description was 'This feels exactly like it did when I had tonsilitis in my twenty's...' sometimes I wish I just had a blank sheet of prescription forms so I could script myself medications I seem to have more of a clue than most o the medics I see

Well, William seems a lot better now, though just feeling tired I think after today's trapsing about to see the Dr, then trapsing all over town again, twice, to get a prescription and get a prescriptions filled

In otter news... - I'm another kilogram lighter than I was last time I weighed myself - which depending on what figures I take as my starting weight (there is something not right between the weight I have in stones/Lb (16 St 7 Lb) and the weight I have in kilos (107) as the former is actually 105, not 107 (I think)). so I was either 107 or 105 KG to start with, and now I'm 88 KG or, was 156 stone 7, and now 13 stone 12... I'm sure the people at the NHS weight clinic thing, got their conversion wrong from KG to stone/Lb, hence why I have 107 KG = 16 stone 7 LB, which, as far as I can calculate... it don't.... so gues I was either more than 107 KG, or was actually 105, depending on what way round they got it wrong - never trust the NHS to even take your weight accurately!

Or height.

as part of my bone density scan, they measured my height (I'll shrink if i get more vertibral fractures/crumbling), only; they didn't say they were measuring my height, and I was not standing upright , just... slouching as one does actually the technition who did the bone density scan, seemed to have real trubble getting the bone density scanner thing to work full stop so knows what my bone density actually* is good job I'm immortal really, I guess...

pity I missed the meet, but I think even had we decided to go, late, after all this messing about today, I'd have not been overly sociable.... quite worn out, after an hour or two's walking earlier mainly in the pouring rain, and then in the boiling hot sun

I hope William's feeling better, mostly for his and your sake, but I'll also admit to really hoping he's feeling up to meeting up Thursday for selfish reasons, as well...

We will be fine for Thursday, just need to know where adn when to meet up! He's already feeling somewhat better, I think a lot earlier, was his panic, thinking he might be proper proper ill... the symtpoms were kinda pretty weird and varied but the antibiotics should be working by then too, he's seemed a lot brighter and a lot mor e himself since later on this afternoon, which was good I think we're both just worn out now, afte rthe mad chase round the city, just to get the scripts and then to get the meds

2pm at the Eagle, I think, and I have your mobile number

cool... I'll try remember that! we can walk there from home in a few minutes but if we aim to be there for 2, then we should be OK

With you in spirit - 'crap admin' has become a bit of a theme of my blog . I don't think I ever did manage to get Hirudoid on prescription.

Mol

- Mol - I've been following your blog, even if I've not always commented on it yes, - did you ever find out if the patient who should have got the letter regarding her follow up to the op app, actually ever got the letter herself?

I'm currently in the process of trying to persue my thyroid replacement, today I spoke to my fabulus pharmacist, the one who scares and beats up the GP Drs at my surgary, to enquire about alternatives to the levothyroixin tablets, and waiting for her call back; as the consultants at endocrinology are utterly unaware of there being any alternatives (though I know there are); all increasingly overpriced and rediculusly exploitive expensive - but that's the NHS's fault for allowing such insaine drug precurment structure that puts them at the feet of the giant pharma companys, but, anyhow, looks like liquid levo might be an option (for oral use), and I'm also noting with interest a few published case studies using IV, subcut and IM thyroid replacement, - yeh I'd rahter prefer not to have to do an extra injection every day, or IM extra once a week or seomthing, but if its the only way I can tollerate the med, if they won't let me try T3 only then, I'll have to go that way... - waiting to hear back from pharmacist though, about the liquid levothyroxin, (doesn't have any fillers), and I might then also enquire of the pharmacist, about (sp?) - tiroscent which is a liquid form of levo with very few* fillers, in like a gel capsule (gel cap?) - but I dont' think that is licenced in the UK; maybe off licence private prescription could work, if I can tollerate that version or soemthing simular, I'll just have to pay for the priviate prescriptions, which is fine, (moderately better idea perhaps than subcut injectiable form)

but. why. why do I hav eto find this out, surely this is what the prof in endocrinology oughta just know, off the top of his head, and be able to advise on, or, heaven forbid, a consultant who actually knew something about the meds they script every day

personally, however, I still can't understand, for the life of me, why, in a patient with diorrhea for over two years, no one will even begin to investigate my gastrointestinal contribution to my not being able to tollerate some meds, - like, that old forgotten thing of differential diagnosis, or, even, diagnosis; I got the GP to go as far as taking a stool sample, and ruling out bacterial overgrowth or viral stuf, but, then, as per useual, nothing, end of investigations. hospital won't even look at my guts.... or, come to think of it, my oedima (which I've now got rid of by gym/exercise), or, indeed the skin problems as side effects of meds; starting to get used to living with constant pain now, from the scars on my back from the acne, so I guess they're no longer a problem, other tan I've ing great lumps all over my body

My feet ar eshrinking. seriously. - a year or so ago, i was having to wear size 10 (male) open sandles, I couldn't get into my size 9 (male and female) boots, and barely into my size 10 (female) knee high riding boots.

Today, seeing my nutritionalist type person, before weighing me; I took off my boots.

Size 8. female, side zip ankle boots. I just pulled them off without unzipping them. - what?!

in otter news... I was weighed, and measured hip and waist... but I think I may do another jorunal for that - I can really take the out of my 10 y year younger, Brother now... he's now so much fatter than me

I've left it with the surgeon to sort out.

It's the lack of joined-upness that bugs me the most, even more than the crap admin. And the lack of joined-upness in your case is just astounding.

Mol

exactly. I just dont understand it anymore.

I've been borderline diabetic err, whatever its called, when your not quite diabetic enough to be diabetic, by one of the measures; I'm being seen, every two months by endocrinology; never once have they ver mentioned my blood sugar levels, or the fact I'm so close to being diabetic; not a single word, no attempt to try prevent me developing diabetes; no push for me to lose weight (that was all my doing), no interesting in my having lost weight, no information or advice on diet, or exercise, nothing; the exercise is helpful to bone density; endocrinology known since January I've got ostioporosis, and only last month was the first time they thought they might start* looking at doing something about treating it; no mention befor eten about exercise, etc. no advice on starting steroids that I should do exercise to reduce risk of developing ostioporosis, no advice to take calcium or vitamin D suppliments, to prevent ostioporosis caused by steroids.
for the last two or three times I've been I've mentioned the dredful acne scaring my body, from the steroids; the Dr hasn't even examined it.
last time I was there I was told I ahd two fractured vertibey in my spine; no advice, no information how bad this is; should I be lifitn g weights/? no idea. so I am. the spinal vertibey dammage I have can cause paralissis, death of internal organs, and put me in a wheelchair, for life, no advice, no mention of any of this, no proper referal to have it treated by say rhumatology, no booking in a new scan, to assess how bad it is, with an MRI to determine how close to the spinal cord the break is, and hence how likely to paralise me it is. nothing. - I'm not even sure that they're intelligent enough to quite figure out that a blind person in a wheelchair, just, for so many reasons, doesn't work, as I still can't move, even with a wheelchair, as I can not use a white cane whilst in a wheelchair.
still no come-back from the PET scan on the anneurysm, no reply from GP or cardiology to the fact I can't take the med tey put me on, to protect it from rupturing; assuming of course the GP ever bothered writing to them.

and. I've no idea what to do. speaking to the GP doesn't work. speaking to the consultant at the hospital doesn't work; as I don't have a consultant, for 'me' as a 'patient' only for little aspects of 'me' as a patient, if that makes sense. so basically I'm just waiting to get ill enough to decide I'll throw in the towel, before I'm so ill I have no quality of life whatsoever, all the time allowing the conditions to deteriorate I assume, as I'm uanble to get anything done about them; most of which is perfectly preventable, instead of preventing, Ill end up dieing. fair enough, I cna't figure out how to not end up doing that; even when I try to ask them sensible things, they dont' respond, won't answer, refuse to even seem to understand waht I'm saying.

The consultant in endocrinology. yeh, the department that deals with hormones, told me liquid levothyroxin doens't exist. I got a phonecall today from my pharmacist saying she'll order it in for me as soon as i want, just need to get it scripted. how can I get a Consultant in endocrinology to script a drug, they prescribe every ing day, yet, which they dont' even know exists. it. doesn't. make. any. sense.

It seems to me, in your post above, you've sketched out a damn good list of complaints to hand to a solicitor.

maybe... I'm just not sure that would in itself actually ahieve much cept scaring all the Drs of me (even more than they alread are) good news, one of the giant spots/acne on my back, that was looking rather caltricitent, and resident like it'd just formed a hard lump/scar, seems to be resolving a bit and the ones of my chest have cleared a little in the past few days, though some smaller ones are joiining the gathered horridness
in otter news, I went to the gym again today, second day on a row.... arms a little sore from yesterday wasn't expecting great things, did quite a bit of weights, then did a lot of stretching... realised I was pushing off doing any more actual* weights, so did a little bit more... on the inclined bench pres, which I find the hardest, and got through a cuple more sets on taht, doing more than I've done on the inclined bench press before plus, was doing ordinary bench presing on the other bench, plus some power lifting on there too....

Even *I'm* thinking, go to a solicitor, and I'm in the complaints resolution business. You certainly need someone to advocate for you, and I don't think I'm the one - I've too much going on. But in any case, I think a letter before claim might help, especially if the letter explicitly sets out what you are seeking, ie, a joined-up assessment of your medical condition. That's a reasonable request, so it ought to get an answer.

The reason I'm thinking legal rather than complaints process, is because if your complaint implies medical negligence, legal will get involved and a complaint may go nowhere - that's what seems to have happened to me, anyway. So going straight for the jugular might get a faster response.

But who knows...

SO... i'VE NO IDEA HOW ONE MIGHT EVEN DO THAT. AFTERALL, i CAN'T ACCESS MY OWN MEDICAL RECORDS, AND DISECT WHAT IS TRUTH FROM WHAT ISN'T; HAVING SPOKEN TO MY ONCOLOGIST THE OTHER DAY, AT MY CLINIC APP, THE ORIGIONAL 'WHAT THE ENDOCRINOLOGIST SAID', MIGHT NOT BE QUITE TRUE; NOT A LIE, JUST THEY CAN'T TALK PROPERLY AND BE SPECIFIC IN WHAT THEY MEAN; i.e., "A FRACTURED SPINE IDENTIFIED SOME TIME AGO IN A ct SCAN", PROBABLY ACTUALLY MEANS; WE'VE GONE BACK OVER PAST ct SCANS, AND SEE A FRACTURE IN YOUR SPINE, ON LOOKING AT THEM NOW; THE ORIGIONAL cT SCANS WOULD HAVE BEEN DONE FOR SOMETHING ELSE; e.g., LOOKING AT HUNDREDS OF LYMPH NODES, AND MEASURING THEM ALL, ALL OVER THE BODY TO SEE WHICH WERE LIKELY* CANCEROUS; THEY'RE UNLIKELY IN SUCH A CASE TO EVEN NOTICE THE SPINE AS THAT ISN'T WHAT THEY'RE LOOING AT... sO, i MIGHT BE BEING UNDUELY CRITISICISING ON THEIR NOT PICKING IT UP EARLIER; ANDY AND, ANYHOW, AS i DON'T AHVE ACCESS TO THE MEDICAL NOTES, i'M NOT SURE ON WHAT SCAN IT WAS FROM THAT THEY'VE NOW FOUND THE FRACTURES

aT LEAST THE ENDOCRINOLOGIST FINALLY DISCOVERED LIQUID LEVO EXISTS, WE WROTE HER A LETTER, THAT WE DROPPED IN WHILST PASSING THROUGH THE HOSPITAL FOR ONCOLOGY AND THE SPINE x-RAY THE OTHER DAY, SAING 'GO AHEAD THEN', BUT, 'FOR ONC EJUST ING LET US KNOW YOU'VE SCRIPED IT, AND WHERE i NEED TO GET IT FROM AND AT WHAT DOSE', THEYR'E INCOMPETANCE IS REALLLY THROUGH THEIR NON EXISTING ADMINISTRATION, COMBINED WITH THE POOR gp SURGERY ADMINISTRATION (NO WAY TO LET ME KNOW A NEW DRUG IS PRESCRIBED), COMBINED WITH THEIR LAZY USE OF LANGUAGE ON THEIR COMMUNICATIONS BUT THE MAIN THING IS, STILL, THEY JUST DON'T SEEM TO LISTEN TO ME, OR, JUST DONT' WANT TO DO SCIENTIFIC STUFF, LIKE LOOK AT THE BIGGER PICTURE, OR AS i KEEP ASKING, LOOK BACK TO MY ORIGIONAL DIAGNOSIS WITH THE CORTISOL/ADDISONS THING, AND THING ABOUT REAPPRAISING IT OR AT LEAST LOOK AT REEXAMINGING IT i'M TOO POORLY BEING POORLY TO BE ABLE TO DO ANTING ABOUT IT i THINK, AND WITHOUT ACCESS TO THE INFORMATION i'D NEED, i DON'T THINK i WOULD BE ABLE TO EVEN IF i HAD THE MENTAL CAPICITY TO DO SO NOW. - ITS ALL KINDA IRRELIVENT i GUESS ANYHOW, THE SPINE IS BROKEN, i'VE GOT HEART DISEASE, Ai'VE GOT OSTEOPOROSIS, AND i'M ON LIFELONG STEROIDS; EVEN IF i NEVER NEEDED THE STEROIDS, BEING ON THEM THREE YEARS WOULD AHVE IN ALL LIKELYHOOD DISTROYED MY ADRENAL GLANDS ANYHOW, BY NOW, i MIGHT AS WELL GET ON WITH LIVING DISABLED AND IN CONSTANT PAIN.

Just print out your hootoo journals. If they don't bite, threatens to publish them.

Pssst. You've got your capslock on.

Oops! yes I noticed the caps lock thing, just afte rposting! oops! - the problem is, to whom do I show it... how much of it is real anyhow, or just in my head stuff, the medications so mesing up my abilty to think right, hence why I can't concentrate long enough to ever even, say work out how I'd be ment o pout in an official complaint or anything and... err. I dunno. I just can't think about that sort of stuff too long or it all just doesn't make any sense I may have to try see my GP this week though, months since I had the MRI for cardiology, and still no letter, or come-back from that, maybe they've forgotten. and cardiology were still not even looking at or wanting to talk about my constant palpitations, that might not even be palpitations, but, that was teh initial 'symptom' that got eh Ultrasound on the heart that discovered this random aneurysm, and of course, now they've foufn that, they won't consider the palpitations. I consider the palpitations, every night for 8 hours whilst I can't sleep. I've not slept more than two hours streight through now, since, err, no, I'm honestly not sure when. not having a one person, taking sole resonsibility, nothing ets done, moved on, and the follow up just doesn't happen; I also need to get them to look at the scaring acne caused by the steroids, some of the ones on my back look like they're getting deep now, moving towards the bone. and I've still not had any mention of being refered to any 'bone' Drs, about my fractured back, which, I'd have thought might be an idea
Still awaiting an reply from endocinology after they decided to try me on liquid levothyroxin. its taken all year to gtet them to realise liquid levo still exists (apprently they can't use the internet ), and, now they've decide I can try it, they don't seem to realise they need to prescribe it and tell my GP they want it prescribed, in order that I can take it. Still waiting ot hear back from cardology from err, four months ago? about a replacement medication for the one I couldn't tollerate. and, still waiting to hear then they'll prescribe the statin, which they decided they would months and months back, but then forgot I assume to actually recall how to prescribe a medication. Every single Dr I deal with is so utterly neglegemt. they honestly don't seem to knwo what they are doing. or... its just me. I don't now anymore, I long ago failed to recognise raeality, thanks to the steroids.