These documents will form the first line of defence against the staggering degree of incompetence I experience on a regular basis in hospital. I consider this necessary because, if you extrapolate what happens to me across the entire patient base, people must be dying as a result, and I’d rather not be among them. This, of course, is no guarantee that I won’t be, but I don’t know what else I can do.
I thought it appropriate to start by providing a list of all that is wrong with me, as I strongly suspect – in fact I know** – that my records are incomplete.
**I have an unredacted record of my stay in 2011, during which my heart failure was diagnosed but not recorded. It includes a copy of the ECG, which clearly flags multiple anomalies, but there is no sign of my diagnosis, Finally, though, after 3 years of denial, I’ve finally got a referral to the Heart Failure Nurse service. My first appointment is next Thursday.
Ronald W. Graves,
In chronological order:-
FMS, (age 19)
Cervical spine arthritis, (early 20s)
Osteoarthritis, (first occurrence, left hip, age 32, now both hips and widespread
Long-term damage from being struck by lightning, (1983)
M.E., (1985) Dx 1995, ME clinic, RLUH
COPD, (first indications 1996, precursors – bronchiectasis and asthma – since age 2 after simultaneous measles and whooping cough trashed my lungs)
Heart failure, Dx 2011, APH. Consultant failed to record it, confirmed by cardiologist, early 2012, APH
Aortic valve calcification & stenosis, Dx mid 2011
Angina, since mid 80s
Bilateral Lymphoedema (chronically infected but currently awaiting swab result),
Primary Addison’s Disease. Dx March 2013. I was not informed, nor was my GP, until after I’d figured it out for myself a few months ago.
Leg ulcer, growing by the day and terrifyingly painful. 2014
- R. W. Graves. (August 23, 2014)
Base-Level Medication Schedule and Notes.
Revised August 21, 2014.
Ronald W. Graves,
Note: Never prescribe additional drugs without talking to me. Last admission I was prescribed Ramipril. I should not have been as, among much else, I have had several bouts of angiodema, the last time in 2005 or 06. If anyone had bothered discussing it with me, they’d have known this.
Also during my last admission I was issued with 20mg of Nebivolol as a single dose (should have been 2.5mg). Luckily I assiduously check what I’m given – had I taken 20mg it might well have killed me.
That was criminally lax and there is absolutely no excuse.
200mg B6 (for chronic depression – I can’t take SSRIs or Tricyclics)
**APH recently changed Furosemide dose to 40mg which is 100% useless. 80mg is what I’ve taken for years and is what I need, not least to control my lymphoedema.
09.30 and 6-hourly if and as needed (and always prior to a dressing change).
10ml solution Oramorph (NB: 10ml solution = 20mg morphine sulphate).
Inhalers (and as needed)
23.30 to midnight
This is an addendum to the above:-
Base-level Medication List Advice.
Ronald W. Graves,
Please leave the drugs on that list alone – it works and keeps me stable.
Hospital doctors who see me for a few minutes, then decide to tamper with my basic medication are putting me in danger.
As are doctors who prescribe new drugs without having the basic courtesy or common sense to discuss it with me first. Do not assume I am your average, ill-informed patient – I am not.
During my last spell in APH someone – I have no idea who – prescribed Ramipril. The PIL states quite clearly that patients who have suffered from angiodema SHOULD NOT take Rampiril (there are several other factors, too, that militate against it). I have had several bouts of angiodema, the last in 2005 (or 2006).
I have also been told, after an adverse reaction to Innovace (it caused a severe headache, as did the two doses of Ramipril that were foisted upon me), that I should not take ACE inhibitors at all.
According to my discharge notes someone – again, someone who couldn’t be bothered talking to me so I have no idea who – has reduced my Furosemide to 40mg a day. This is utterly useless.
I retain fluid like a human sponge, and I also have bilateral lymphoedema (legs), currently under control and I want it to stay that way. It takes, and has taken for some years, 80mg for Furosemide to be effective. That is the dose I need. Put this right, please.
Note this well: During my last stay several junior doctors, without so much as a by your leave, squeezed my leg vigorously. DO NOT DO THAT.
At least, do not do so without my permission – it is extremely painful. In fact, I also have a large and excruciatingly painful leg ulcer – one witless nurse squeezed THAT. And that must never happen again.
- R. W. Graves,
August 22, 2014.
And finally, there will be no more i-v drugs:-
To whom it may concern,
Subject: I-V drugs etc.
See separate letter re Addison’s Disease.
This is to inform you that I will not permit the intravenous delivery of drugs or any other substance unless my life is demonstrably at risk. This also applies to PICC lines or any other device of a similar nature.
This also applies whether or not I am conscious. Failure to abide by this without a court order will result in legal action.
The reason for this is that last time I was admitted to APH in November 2013, i-v use was so enormously careless and in some cases so stupid and incompetent that it bordered on the criminally negligent, and almost every accessible vein, in both hands and both arms, was damaged, some beyond recovery at the time of writing, causing me a great deal of pain and distress.
This will not be permitted to happen again.
In addition, I found the purging process to be excruciatingly painful, because my veins were so often blocked. Nurses and other staff refused to accept that was the case, which resulted in staggering displays of uncaring idiocy.
One nurse tried to tell me it wasn’t pain I was feeling, it was just cold – do I really look that stupid? Another persisted in trying to purge a cannula that clearly wasn’t going to be purged, pain or no pain. Telling her to desist or I’d throw her out of the room was the only way to stop her. That vein, by the way, is still blocked.
I don’t know why my veins block when cannulae are used, but they do, and nurses and medical staff just do not listen to patients because they think they always know better. I can assure you that, in this instance, they do not. This has happened far too much in the past; it will not be permitted to happen in the future.
The last straw was when a senior nurse (white uniform, blue trim, middle-aged, actual rank unknown), connected up my i-v via the electronic pump. Shortly afterwards it sounded an air-bubble alert and shut itself down. I pressed the nurse’s call button and settled in for the inevitable wait (the record stands at 2 hours, in April 2013).
The same nurse eventually turned up, by which time there was a large and visible crop of air bubbles in the line, so what did she do? She gathered all the plastic tubing into a ball, and squeezed! The resulting pressure pulse blew a small hole in my arm forward of the cannula, blew the cannula itself backwards (I still have the scar), and trashed the vein. As I said – criminal stupidity. Or malice – she clearly resented being disturbed in the middle of the night.
Finally, in a related problem, I was issued with anaesthetic cream, for one last try at getting blood. This needed to be applied at least an hour in advance. The junior doctors refused to wait that long and so, of course, the cream didn’t work. They were firmly told to leave.
By the time I was discharged, the aversion to needles that has been a problem since childhood had been ramped up into a full-blown phobia. That is still the case. If I am able to control it sufficiently I will permit blood to be taken (by Phlebotomy staff only – see my file for the reason, April 2013). That is the limit of what I will permit.
Ronald W. Graves.