What follows is a letter to the hospital in a last-ditch attempt to stop them giving me OPD appointments that I cannot possibly keep as they are far too early.
The Vascular Clinic, in particular, is a serial offender. In 2013, as I was leaving the clinic, they gave me an 08.30 appointment. I said it was too early. They said, OK, 09.00. No, still too early – I can’t cope with anything much before late morning. If you insist on 09.00 I won’t be here.
They did. I wasn’t.
They dumped me from the clinic.
The letter has been redacted so that no-one can be identified, except me of course. But look, if you do manage to figure out to whom I’m referring, don’t put it in a comment, it won’t be published. I’m having enough trouble without pissing them off!
I have just received an Appointment to see Mr. Xxxx on March 31 at 08.30. As I’ve said many times before, most recently just a few weeks ago, keeping such an early appointment is quite impossible. I’m not even mobile at that time. I’m housebound and most days it’s impossible to go out at all, at any time.
I’m writing to tell you this as I have made the point verbally several times but been ignored. Recently, when I protested that I couldn’t keep a 09.45 appointment, it was changed to 10.00. That, as I’m sure was the intention, is less than helpful.
I am seriously ill and now a full-time wheelchair user, having been part-time for the better part of 30 years – there is very much more wrong with me than the leg ulcer with which I’ve been referred to Mr. Xxxx, seriously painful and disabling though that is. For me to be there for 08.30 I would have to get up around 04.30. That, too, is impossible – let me explain why.
My day starts at 06.00, with the first batch of the 60-odd tablets, capsules, and inhaler doses I take daily. I then go back to sleep, unless chivvied out of bed by excruciating pain, until 07.30 – 08.00 by which time the drugs are in my system and, if I’m lucky, I can function. Or not. No two days are the same, which makes planning impossible.
The pain of my ulcer is, of itself, a huge problem – I can do nothing until my analgesia kicks in, and some days it simply doesn’t. Some days the pain wins.
The bottom line, taking into account all that’s wrong with me (I have no idea if my records are complete – one of the first things APH did after I moved to Wirral in 1984 was lose them – so a list follows), is that most days I am unable to do anything at all much before late morning. And if the preceding night has been blighted by Pulmonary Oedema, which has settled in as a chronic condition, then the following day is likely to be a total write-off. And since my ability to breath is at a premium, phoning to cancel is unlikely to happen.
It should go without saying that all of the things which follow are outside my control, and can affect me all together or in totally random combinations. Or even – very, very, rarely – hardly at all. However, my ulcer, arthritis, ME and COPD are always present. And always debilitating.
Do you now understand why I cannot, ever, guarantee to keep an early appointment, no matter how important it might be?
One final comment. You will find a remark in my file from Dr. Xxxx to the effect that I use a wheelchair because “his legs hurt and he feels a bit weak”. This is the most unmitigated and insulting nonsense, and utterly divorced from the truth. The many reasons, other than excruciating and unremitting pain, why I use a wheelchair (for which I was assessed by the NHS in 1986), should be evident from the following list, from which Dr. Xxxx drew his massively wrong “conclusion”.
Ronald W. Graves.
PS: You are a hospital, you should have a system in place to cope with the problems of disabled patients, especially when illness compounds our disability, and do your best to accommodate us. Instead, in my experience at least, we have to fit in with you. That’s the wrong way round. I have made you aware, repeatedly, of the problems caused by my disability. That you continue to ignore them smacks of discrimination.
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) See supplementary list.
M.E., (1985) Dx 1995, ME project, RLUH
Angina, since mid 80s
COPD, Stage 3 (first indications 1996, precursors – bronchiectasis and asthma – since age 2 after simultaneous measles and whooping cough damaged my lungs)
Heart failure, Dx 2011, APH. Consultant failed to record it, confirmed by cardiologist, early 2012, APH. Re-confirmed while admitted to APH with Pulmonary Oedema August last year. Subsequently denied by Dr. Xxxx. Personally, I’m going with the majority opinion, not least because I live with the symptoms every day of my life.
Aortic valve calcification & stenosis, Dx mid 2011.
Bilateral Lymphoedema. Currently in remission, but see leg ulcer.
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 year later.
Leg ulcer, growing by the day and terrifyingly painful. Late 2014 to date.
On being struck by lightning…
This is the list of the long-term conditions that result from surviving a lightning strike and which affect me. The original list was much longer but I’ve shortened it by including only those conditions which currently affect me.
Most people assume that lighting either kills you or leaves you horribly burned. It can do both, of course, but not always. And survivors, of whom there are more than you might think, are often, in many ways, the worse off.
I wasn’t burned, by the way, but, try explaining to a doctor you’ve been zapped when there’s not a mark on you! Lightning, you might have read, as I have, always leaves a characteristic “fern leaf” pattern on the body. What most sources won’t tell you, and most doctors don’t know, is that it can be internal, and only turns up in an autopsy or is overlooked altogether. At least I now have a GP who knows this.
Long-term symptoms caused by being struck by lightning:-
Ataxia (sporadic but increasing)
Chronic, often severe and intransigent, Pain
Cramps (treatable with magnesium, 600mg daily)
Crying Spells (if you were in as much pain as I am, you would be prone too)
Elevated Heart Rate (Pre-dates HF-related tachycardia)
Eyes Sensitive to Light
Immune System Defect (yes, but it’s always been defective)
Loss of Grip
Lower Sex Drive
Numbness in Hands
Numbness in Legs (alternates with severe burning sensation)
Obesity (Long-term steroids contribute, too)
Panic Attacks (Since I now have HF to worry about, these are back!)
Ringing in Ears
Shorter Attention Span
Sleep Disturbance (as in what sleep?!)
Stiffness and pain in joints (Osteoarthritis?)
Suicidal (frequently, and probably understandable). Given that what ails me is not going to end well, I have my exit strategy already organised, against the time when I can no longer care for myself. Of course, it might take me off suddenly, in which case, no problem. And no, I don’t feel as blasé as that seems!