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

So I didn't put in a journal entry yesterday... adn I think I missed a couple other days anyhow... - I just never turned the PC on yesterday.

Anyhow. I had my clinic appointment, three weeks ago this Friday, and that was seeing the new Dr, and she seemed a lot betterer than the professor I had been seeing; she actually seemed to engage, and even, gosh, examined my oedema (which no one in a year or more of mentioning it had actually bothered to examine).

She said she'd write a letter to me;following up from the clnic appointment, not least to tell me if I need to increase my dose of levothyroxin (the thyroid drug), and, of course, if my levels were OK, I assumed they would tell me they were OK; so I would know that I can contact the specialist growth hormone nurse, and start on my growth hormone injections.

No letter had contiginued to arrive; so we saw the GP last week, who said she would contact the endocrine people, and try and follow up on the letter etc).

So. yesterday I phoned the hospital, and spoke to one of the specialist endocrine nurses.

Which . is about the most shocking thing I've yet encountered.

no. there isn't a Dr letter, from the consultant, as she hasn't wrote one, and isn't going too.

OK. so, Dr consultant lied to me. and, so, no on eis minotiring my blood results?; what the is the point of measuring my blood levels of the hormones, if, no one is looking at them?

I then questioned her about my thyroid levels, whcih she didn't tell me - I pointed out to her I need to know if I am to increase my levothyroxin, to raise my levels high enough to start the growth hormone; or, conversely, if that isn't the case, then; are my levels high enough so that I can start growth hormone.

nothing. no response.

nurse said she'll contact Dr to ask for a clinic letter. no indication what my thyroid levels are, whether I should increase my dose, nothing on whether my levels are high enough to start th e growth hormone; so then I asked about the kidney function test, and heart ECG - both were fine apparently; so, no one was going to tell me that? right.


I don't think I can cope anymore. I cannot understand this, their attitude, or how the 'system works', this i s just too illogical; it doesn't make any sense at all, therefore, I'm just not seeing what any point in it is, in my dealing with them, in attending clinic, as it is all clearly a waste of time. I just don't know what to do.

thanks - I think earlier I was still a bit shaky from the conversation with the nurse on the phone yesterday... kinda in shock at their attitude... - due to my hormone nonsense, I can't really 'do' stress; as I don't put out the extra bits of cortisol as and when I need them, just having the 'blunt' level of teh replacement background meds/steroids... - so I think I get vast amounts of adrenalin instead, and I was feeling reallly 'weird' this monring, which I think wa sthe massive adrenalin spike.... - no wonder when they treat me this badly I can often feel quite a lot of agressiveness, its just the adrenalin spike I think...

Been out for a walk now, with William, went to the butchers for sausages and bacon and then into the Turkish supermarket for some tinned beans (kidney and black beans), and their tinned chopped tomatos (as they're so much cheaper than anywhere else), plus some of their decent long chili peppers and met a few random nuttters in the street we know from the pub, including an Isralie authoress and a woman from the pub, (also has thyroid problems), who used to be working at the university in student support when I was there Think i may have to nap soon, then with William we are going to write an EMail to send off to one of the endocrine nurses who was /is dealing (or not apparently), with my growth hormones, ask for clarity on why I'm being ignored/badly treated, which we may then forward the Email we send, plus the endocrine depts reply, onto the hospial patient leiason people (sort of com complaint place)
Though I do wonder ow much more time is worth wasting on them, or whether I should just try soon as possible to get refered to a differnt hospital... which might be as useless but maybe a chance they will know what they're doing and have some kind of functioning administration in place at least

The current hospital don't even keep accurate records; turns out my last testosteorne injection wasn't even recorded on their records

I wish I could give you some good advice, but I just don't know how the NHS works.

If you were here, you'd probably just switch doctors or hospitals. I'm rather spoiled in this area as Houston has some of the best hospital systems in the country (for a price).

Baring that, I would have gone to a patient advocate to see what they could do to address my issues. This would be the last step before going outside of the hospital.

Next might be to contact either a lawyer or the media. One of the reasons our healthcare costs are outrageous is because of malpractice costs. Doctors and hospital systems complain about the high cost of malpractice insurance and lawsuits. And they should as those costs are outrageous, but what's also outrageous is that according to a recent study, medical errors are the number 3 cause of death in the US!

http://www.npr.org/sections/health-shots/2016/05/03/476636183/death-certificates-undercount-toll-of-medical-errors

And I think that's the level of concern they should be attending to with your case. While it's spotted amongst talk of shopping, cooking, folding towels, debauchery of various levels, and stuffed animals; you have well documented your symptoms, concerns and how your medical staff have addressed or failed to address these issues.

Personally, I'd sue. I'd at least find someone in administration to bark at.

I don't know how the NHS system works either; its not like just because I'm a patient I automatically know... - there is no patient advacat err, advicit thing, that applys to me. the closest is the hospitals own patient liason service, which I had to use last year; and which was pointless and ulessles, and didn't achieve anything. sueing I don't think s an option, asides anything else I'm too ill to devote time or energy to it, I just want to be treated and have medical Drs do actual Dr things, like diagnose and treat me, and monitor the blood levels they're ment to be monitoring. - if there as incompetant as I think anyhow, its probably all too late; the blood tests I could have had, before I went onto steroids, I now can't have, as the steroids will have wrecked my adrenals so much already, etc, I don't have much faith in their entire diagnosis really, nor their diagnostic skills TbH. But I have to try get them to do soemthing, in order at least that I preserve my one and only chance to be on the really expesive med, the growth hormone; its in my fridge, gradually going out of date, about £900 worth, enoguh for the first three months of a six or mine month trial, but if I don't get on to it soon, and shows signs of improvement, then I'll fail to meat criteria, for the NHS to fund it, at the cost of £3000 per year, so I need the trial to work; however, as the nurses and Drs know, the trial can only really work in patients, wo's other hormones are being replaced, to optimum levels, which, ATM mine arn't, hence why I'm ment to be waiting for the thyroid levels to come up enough to be able to start the growth hormone...

and in the meantime the oedema gets ignored, and potentially distroys bits of my body as it remins untreated, heart, kidneys, etc., etc.,

I just have no idea what to do. my next clinic appointment is I think Feb, maybe January, but we've not even had the appointment for that through yet, and I can't just wait until then.

The GP who seemed helpful; seems to have blown only hot air; she said a lot of stuf, but no come back, no treatment for the oedma, and no plan. - she did say she was writing to endocrinology, but by the response I got on the phone from hospital, I doubt if the GP even bothered. and I'm not sure I can really explain it all clear enough to even write to the patient liason people at the hospital, which given their previous track record is probalby a waste of energy I don't have in the first place.

My offer to help with a complaint remains. My complaint about my own treatment is now with the hospital and being investigated, and my chemo is on hold, so I've got the time and the energy.

But tbh if there is another hospital you can transfer to, do it anyway, *and* make a complaint to the current hospital. A good solicitor will advise you to do this before suing, because it's free and can have the same outcome, and also sometimes the courts require people to have exhausted local 'mediation' before starting legal action.

In your complaint:
List the things you think the hospital has done wrong. Be as precise as you can (forces them to cross-refer to their own records): specify the letters not written, information not provided, information not shared between departments, information not taken into account, failure to listen to the patient.
Describe how this has affected your daily life and for how long. Focus on distress, lack of independence, reduction in quality of life (all of those beyond what would be usual for someone with your medical circs), plus inconvenience (having to chase) and loss of trust (having to transfer to a different hospital)
Use the phrase 'consolatory payment' in the list of outcomes you're seeking. Don't specify a figure or the response will just focus on why the hospital shouldn't pay it.

I did all that and PALS just put my complaint straight through to the hospital complaints department for investigation. I'm fairly confident of what the outcome would be if *I* was investigating it but I think it's likely I'll have to go to the Ombudsman to get it. Wish I was in a position to investigate yours - from a professional point of view it's a really interesting one with a strong narrative which would be ideal for a public report...

Mol

Mol

I'm not sure I could be specific enough; my short term memory is distroyed now, so I can't even remember stuff properly. and in a lot of cases, its less specific things, rather their more general attitude of ignoring me, not listneing to anything I say, etc; I'd never be able to remember dates etc.... The only time I've got them to act was when I went into the adrenal crissi and was admited to hospital dieing; the response to which was what I'd been askign them to do for ages (I think), I.E., switching steroids as the first made me so ill, but, even there, they'll tell me 'its very strange you don't react to the meds as one would expect', but, then they... just do nothing,; I thought medacine was based from a science background, so I don't understand their unwillingness to research, test, whatever, to find out why I don't resond well...
then I had to do the same with the thyroid meds; I stopped taking them as they were making me feel more ill, - then they seemed to pay some attention, which was when one nurse just 'mentioned in passing', 'Oh, some patients just can't tollerate certain brands, and only get on with one brand of levothyroxin' - why they on not tell me that when I was telling them how badly I reacted to it... dunno...
I'm just fairly cetain I'd not be able to recal any dates, of. E., g., when I first told them of the oedema, or when (if?) I mentioend to them the levo didn't agree with me; often I wasn't able to tell them such things, as the consultant I was seeing woudl not listen to me, - so the clinic appointment efore the one a few weeks back, withe the prof, he left the room after teling me I was fine; he saw my blood results so figured I'm well/fine; he walked out the room, then, so I coudln't even tell him of how ill I was and how ill the meds were making me... its just such a mess, and its a mess in my head; I've no concept of time anymore, so I can't recall if things were a week ago, a year ago, months ago; its all the same; ; past is just one place and I've no concept of more in the past or less in the past, if that makes sense.- I can't switch hospitals immedaitely though, I think, or I'll definately lose teh growth homrmone, and the growth hormone may be my only way to ever remotely feel like I'm still alive, as at the moment I'm just a corpse, I can't feel anyting or exist like this, I'm just not alive, but not dead either.

If you get help from someone, your journal has lots of data about appointments and non delivery of letters and information.

Do complain. Shout about it to media too.

I'll try ... but Its just trying to get them to pay attention first as the main thing! IMO!

Gosh. just happened randomly across a tweet, about low cortisol symptoms, - err, yeh I get virtually like all of those, all the time. err, if thats symtpmos of being low on steroid, why the did my Dr lower my steorid dose last time hmm. maybe I'm just worefully undermedicated on the prednisolone, although I don't really want to take more than I absolutely have too, due to the bad side effects of it, espeically the long term ones the hospital refuse to monitor like bone wastage and necrosis and disabetes etc hmm...I may experiment with my dose again... though the last time I did that I ended up in hospital and nearly died but this time going up in dosage, not down.... or rearrning the dose to a more normal single dose in the morning rather than 3 MG AM, and 2 MG PM itts ment to last 24 hours as I'm on the longer acting prednisolone now, and normally it is dosed just a single in the AM dose so maybe that would suit me more or just make me function a little better, for the majority of the day, rahter than this zombie state where I just wake up in the evening...

Gona try put a letter together, with William later, just about the most recent phonecall and lack of the Dr following up on my blood results and advising me about increasing or not the thyroid meds, and so we can Email that to the endocrine nurse who's ment to be in charg eof my growth homrone, and then we can copy that to pals, the patient liason peoples

Maybe I'm missing something, or read something wrong, but have you tried contacting that "new doctor/consultant" directly? When you did see her, you were very optimistic. I think you should contact her office and ask why this letter hasn't been sent and why you're now being told it won't be. You currently only have someone else's word for this. It's possible she did send a letter and it got lost, or that she simply forgot to send a letter.

If she is indeed reneging on the things she said she do for you, then you deserve to hear her reasons for doing so directly.

It could simply be a case of your regular endocrinologist not liking someone else second guessing them and lying to you about the situation. As bad as they've been so far, I wouldn't put it past them.

The person I spoke to was the endocrine nurse, well, one of them; that is my point of contact with the clinic, and she looked on their system, and said that the Dr hadn't written a letter, and that there wasn't anything on the computer to indicate the Dr was goign too... - it could be the new Dr/consultant, who seemed very good, just isn't, I'm not sure I have any means to contact the Dr directly, or her office, well, I don't know she has an office, i have no idea how it works, they just sit in rooms by the clnic general area, off the main waiting room, I don't know if they've got admin for each Dr there, or not, they dont' seem to ahve much admin at all receally, asides the reception desk person and then the nurses at the nurses sation who I phone/deal with I gues I coudl try phone teh reception of the clinic, ask to be put through to the Dr, and see what happens I could try that tomorrow, but also send off the letter/Email to the growth hormone nurse at the clinic, as she's ment to be monitoring my thyroid levels for when they're good enough for me to start the growth hormone, so she sho9uld either have phoned me to say start the GH, as of the blood results from the last clinic app a few weeks ago, or have phoned to tell me to increase my thyroid meds, either way no one seems to be bothereing to communicate with me, or indeed internally, as I assume no one has seen my bloods, cept maybe the Dr....

Ok I've got sister in law coming for the weekend tomorrow, hospital Monday, will look at starting to go thru journals Tuesday.

Mol

awww... and sorry I didn't comment on any of your blogs for like ages and ages, with all the stuff with your arm - I am often so frazzled in my so-called brain by the time I get round to reading Emails and stuff, that I cna't draw up enough energy to comment... - yeh ain't fatigue grat I'm fairly sure the fatigue I get now, day to day is greater than I got durin g chemo, which is utterly baffling, as I'd imainge the meds now to treat the hormones, oughta mean I'm feeling better than no drugs to treat the hormome deficiency, plus chemo... I felt better than I do now, mostly during chemo last year I think... now its just constant fatigue and brain fog

No worries, I don't really expect people to comment, it's just a way for me to keep lots of people updated without having to write the same thing multiple times! I can see from the stats how much traffic I'm getting And you're going through a majorly tough time yourself

Mol

We oughta jointly invent a special game... in which patients can beat their Drs to death for not paying attention

Yet again, got to this evening, and I'm awake, alert, my typing is now like full speed as it shoudl be, and I'm thinking so much clearer - still contemplating an idea, that I may actually be low on the steroids most of the day, as I often only feel 'right' (Right isn't what it used to be, mind), in the evening, when I've taken the full dose as a result of takign the second smaller dose... - so I'm thinking just scoff the entire dose in the AM: as the pred has a long half life unlike the HC, I won't get way low, until the next morning, when I'm due my next dose (but that should be OK as I basically take it the same time in the AM, to within a few minutes anyhow)

So far this evening, ahving woken up, I've switched energy suppliers, ordered up some stuff on the net I have been meaning to do for days, and started roughtly drafting what I want to write to the endocrine growth hormone nurse person - basically to say how unsatisified I am with my treatment, especially follwogin the phoenecall the other day, and taht I'm writing to her, to try get help, before we resort to esculating the matter to the PALS at the hospital, and beyond.... - and of course actually asking for aanswers from her, to the questions I need to know, like upping my thyroid dose, or startring GH etc...

I have to say; reading your blogs; your busier ATM, on a day to day basis, than I think Iever was even before I got cancer, ahd the brain hemoridge etc lst year! so.... carry on you seem to be doing so fabulusly well, despite of the setbaks

If you are a patient in Denmark you have certain rights and I'm guessing the same applies to patients in the UK (since our national health services are very similar and were founded around the same time back before it all went awry). So I thought the following (provided by my sister who is an experienced ) might be helpful:

Contacts
When hospitalized or receiving treatment courses of long duration, you will be offered one or more contacts. In that way, you and your relati ons always know to whom you should approach with potential questions.
You will not necessarily meet your contacts when you are hospitalized or receiving treatment. But you are always welcome to contact them if
you or your relations have any questions regarding your treatment. If your contacts cannot provide you with an answer, then they will find someone who can.
A contact may be a doctor, nurse or another kind of healthcare staff employed in the department where you are being treated.

Your right to information
A good treatment course is based on mutual trust.
As a patient you are entitled to get information about medical condition and treatment options, if you have reached the age of 15.

As a patient, you are to be provided with:
- Diagnosis
- Treatment options – the relevant possibilities
- Risks and side effects – which may occur due to examination or treatment.
When treatment procedure entails an obvious risk of serious side effects and complications, then the information given to
the patient must be more thorough and detailed than in case of lesser and more routine based and safer operations.
- Consequences – in case you have no wish for treatment
- The treatment course and the treatment results
As a patient, you are also entitled to refuse receiving information about your medical condition and treatment options. This also implies risks relating to complications and side effects.
Should you not wish to know the result of an examination/treatment, then the staff must respect this.

Your medical records
As a patient, you are entitled to view your own medical records and receive a copy of them if you wish.
If you would like to view your medical records, jus
t ask the staff. You can receive a copy of your medical records free
of charge, while a small fee applies for copies of X-rays. In some cases, you may be required to pay for a copy of your medical records
from your GP.
Electronic medical records (E-journal)
Your electronic medical records contain information about you from all of the public hospitals in Denmark.
You may have to wait 3–5 days before you can view your data.

Hospital choice
Free choice of hospital
In Denmark you have free choice of hospitals. This gives you the righ
t to choose between all public hospitals in the country, including a selection of private specialty hospitals.

Expanded free choice of hospital means that if the region cannot provide a treatment or a diagnostic observation within a month, all patients may choose to get a diagnostic observation or treatment at a private hospital.

Complaints
It is not always easy to know the correct place to submit a complaint. It is not unusual either for a complaint to touch on several points, each of which has to be handled by different authorities.
You are entitled to submit complaints about anything relating to the health service via Patientkontoret ( = The Patients' Office).
Patientkontoret can assist you in formulating the complaint or submitting it to the correct authority. Patientkontoret can also provide you with further guidance and information on patient
rights.

- I never had any of the side effects of any of my meds, from endocrinology, explained to me, cept one nurse, who explained the side ffects of the growth hormone; which is the one med I'm not on yet



you'lll all be so proud

William and I ... just sat on teh sofa... over a fairly long period, and he wrote down, and I dictated, (yeh with his help wording it too), a 'letter', which we've now got in writing (I'm gona type it in on the PC in a little while.

To send to the one endocrine nurse who was helpful, a couple of times, and William just phoned the hospital/endocrine dept, to get the Email for the secutary for the prof in charge of the dept, - who we have never heard of before, or seen there, but who was very helpful on the phone; this is a 'your last chance to act' letter, to the dept, before 'we escilate measures further to a full complaint through the hospitals complaint system', - with bulleted/numbered points on the letter, to spell out exactly certain medical issues I want addressed immediately which they've failed to address, or take seriously, or just forgotten about, plus explaining how emotionally distroyed I have become by their entire attitude towards me, in demining me, and belittlitting every concern I've raised with them, and how their attitute towards me has actually made me more ill; both Dr and nurses attitudes and reponses to me and my concerns, and how, previously their not addressing or listening to my concerns actually once resultsed in my nearly dieing as I had the adrenal crisis as they didn't listen to my issues and bad reaction to the meds when i was on the HC... - we've worded it out well though I think and sainly asing them to respond, and do something, giving them the oppertunity to do so, before we take further measures. and, just... maybe... questioning as to whether some of their reaction to me, is, as I ponder, due to my sexuality gender identification or blindness...
There are some very detailed medical points in it, that I want addressed, Re my odd reaction to meds not having been examined. My not having had bone density scans. My not recieving monitoring as I shoudl for thyroid levels (and so not being able to start growth hormone), etc., etc...

I need a cup of tea and a sit down before I type it in and get it sent off.... - I think my adrenalin is piking a bit... and, nothing better than some caffine to sebtle down some adrenalin spikes I'll get the .... ... s yet

Sounds sensible, so with that!

hopefully it will achieve soemthing.... if all its gona achieve is the hospital not being of any use to me, then I switch... then at least its achieved that, and I might get Drs and nurses who take me serious and at least listen to what my symtpoms are rather than assuming... and, dunno... might actuallyl treat me for symptoms I have