I went to the Diabetic Foot Clinic yesterday.
Some background: Over the last week, HWMBO was complaining that my foot-in-a-cast smelled. I am sensitive to that, but I could not smell anything when I tried, so discounted it. On Wednesday I had asked the District (=US “visiting”) nurse to come early as I had a meeting at the Diocese at noon. I was getting dressed after bathing and had my shirt and briefs on, but not my trousers. I had taken my “cast shoe” (rubber “sandal” that the cast fits into which protects it from being pounded on the floor or pavement) off in order to put on my trousers. The doorbell rang, and it was the nurse. I had to clomp downstairs without the cast shoe to let her in and then return upstairs to finish dressing after apologising for my state of d
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I’m pleased to see you write this out, and that you are blessed to have the intelligence and talent to do so. I’ve had the misfortune to have chronic troubles, and they drag on your emotional life, and your ability to manage your doctors, and you begin to question whether you are even maybe crazy as you slog along day in and day out with your fucking conditions as they maybe get better, treated and painful and nursed and attended, hopefully with some amount of capability as you yourself are focusing on this with all of your strength and mind. Valley Forge.
Thanks for the post! I’m always interested.
By the way, do you need any razors, peanut butter, or anything else I could send you. I did mail you a bunch of Crystal Light and other brands to try out.
Thoughts and prayers are always with you.
Hang in there.
Crystal Light sounds really great. I’ll take a gross…there is no analogue of Crystal Light here, as far as I’m aware. Iced tea, pink lemonade are my favourites but I’ll take anything…
I have a pal who is coming to London in August and bringing the heavy stuff (Irish Spring, peanut butter, Blue Diamond smoked almonds).
And thanks loads for asking. How is your new stomach coming along. Has your diabetes been affected by it (in a good way, of course)?
Much love and hugs from London…
I think you need to take charge of your medical treatment. I think the most impressive thing I ever heard was when one of my friends got HIV. His social worker told him, “Don’t listen to any doctor or nurse. It’s your body. If you feel bad, you demand treatment. If the meds they give you make you feel worse, demand improvement. If the meds they give you don’t seem to be helping, throw them on the floor and make a scene. Physicians do not know what’s best, especially with this disease. They need you to tell them what to do. They are here to apply their expertise, but only you are in control.”
Frankly, I think you need to do the same thing. This whole stupid episode is because they didn’t listen to you in the first place! You knew what had to be done, and they didn’t do it. It made things 1,000 times worse. Okay, you didn’t know that the “heel vacuum” was the answer to your infection, or flooding your body with antibiotics would work. That’s their expertise. But you knew what was and was not working when it came to your ulcer loooooooong before they did. You saw the day-to-day changes and improvements (or lack thereof).
I think you need to also question them a lot more as part of your “take charge” attitude toward your healthcare. Do some research (or maybe more research). This is Oxford Union every time you see a nurse or doctor. Press them with alternative treatments. Make them defend their choices to you. Be whiny and upset and picky about how they are trying to help your body heal…because with diabetes and with the kind of problems you can get with your feet, anything less than super-picky gets you another ulcer down to the bone!
You have an amazing support network of friends, too. I think it’s time, though, for some of them to step up the support a bit. You can’t research, press, question assumptions, and demand care all by yourself. You’re the patient! There are just some days when you can’t do that, emotionally. If you had cancer, they’d be right there helping you. Well, start treating your foot problems as if you have cancer: This is something which will lead to amputation, but is ultimately beatable. (Gosh, just like cancer.) Your friends need to stop treating these medical problems of yours like they were not serious, and start treating them as if you had cancer. Not every friend can do this. It will take some serious discussions with friends to see who can, who is able, and who is willing to step up. But I think you will have no problem finding several friends to do this!
You are also amazingly strong and self-sufficient. Sometimes, however, this gives other people the impression that your problems are not that bad. “Oh, Chris, he’s the one in the foot cast getting around just fine! Sort of like Sybil, when she had the toenail out…” Well, this isn’t a toenail that’s gone wonky and which will grow back in just fine in three weeks. Some people may not like the fact that you are “shoving your problems in their face.” Tough. Separate the men from the boys, here. Winnow out those who are willing to see this is a very, very serious medical problem (and are willing to help!) from those who are unable or unwilling to do so.
That’s my aggressive five cents. (What’s that in euros?)
I really appreciate your sentiments and encouragement. I think that one of the difficulties is that it is difficult to know what alternatives are available here. As we do have a system where the treatment is free at the point of need, our alternatives are fewer than they would be in the United States, where since you are paying for every aspirin they prescribe, you as the patient call the tune to which the medical staff dance.
In a way, I’m learning on the job. Had I known about this pillow cast before they put the full cast on, I might have asked whether they could put this on instead. I expect they would have said “No, the full cast is better” and left it at that.
I do in fact throw my weight around when the clinic has done something absolutely wrong. For example, two weeks ago, after they added more doses of teigoplanin to my treatment, they sent a fax to the District Nurse which said, in part, “Due to a deterioration in his ulcer, we have found it necessary to prescribe antibiotics.” This contradicted what they’d said to me the day before (“Your wound is looking much better.”) It turns out that they were just using a form letter/fax to inform the District Nurses that they would have to visit for another two weeks. But the nurse arrived the next day saying, “You got some bad news yesterday, I gather.” I made a fuss about that on Wednesday and told them they should cross out the part about deterioration if it’s just a notice that the antibiotics will continue.
The bad thing about universal free medical care is that it fosters an attitude in the healthcare staff that, as the patients are getting this for free (although a good chunk of our taxes goes to the NHS) they ought to be grateful for what they get and not make a fuss. There is also the English attitude toward life in general, which can be summed up as, “Mustn’t grumble.”
I have refused to take new medications when prescribed in the hospital unless the prescribing doctor (or another doctor) comes and informs me about it—what s/he prescribed, why it was prescribed, and what it is likely to do. The nurses would just come around and say, “Here’s your magnesium glycophosphate pill.” I told them “What’s that and why am I taking it?” “The doctor prescribed it.” I told the nurse, “Get the doctor to come round and talk to me about it. Until then I’m not taking it.” Another healthcare professional said that prescribing medications without informing the patients is quite common in these hospitals. Since medications are free in hospitals (and free to me whenever as I’m diabetic) doctors seem to think that they can prescribe without telling the patient. In the US, where you have to pay for your medications, a doctor would be very unwise to prescribe something without telling the patient first.
I now know very much more about the alternatives available for treatment of my foot. The first question I am going to ask when anything changes now is, “Could this treatment make any other part of my foot or body worse?” I am going to be more demanding but I have to be sensitive to the social and medical context here in England.
Even within the financial boundaries set by the NHS, you have room to maneuver. Often, it’s not about the cost of the care but merely about which treatment option is available. Doctors within the NHS are notorious for following the treatment rules, which often prescribe an incremental and rigid set of treatment protocols. Doctors have the ability under the NHS treatment rules to choose alternatives. But they often don’t, because it’s easier. Sloth, that deadly sin, infects doctors in the NHS just like it does everyone else.
As for prescribing meds without telling the patient, I think you need to revisit an American general practitioner’s office again! Most patients here ask zero questions of their doctors. But 90 or 95 percent of the time, that’s fine. But diabetes is such a very tricky, very personal disease — one that doesn’t really follow “treatment guidelines” too well due to each person’s amazingly individual reaction to insulin and ulcer treatment — that asking questions and being pushy and seizing control of your treatment is, I believe, the only option. I’ve had four friends already lose feet (or more) to diabetes. Each one wishes he’d been far, far, more aggressive in the beginning.
I think being “sensitive” to the context is going to get your foot amputated. Is that scary? It’s meant to be. It’s not about NHS; it’s about your diabetes, and the effect it’s having.
You started out by writing about how afraid you are. Well, now you’re effectively saying, “I should stay afraid. I’ll just nudge, rather than push. That’s the best way to deal with the fear of what I’m confronting.” I disagree. I’m not saying you should be nasty or mean or cruel. I’m saying be pleasantly aggressive.
As for treatment options, reasearch them anyway. You never know what NHS may or may not allow…
I take your point. Believe me, I do. The guy who is the head of this clinic is THE expert on diabetic foot treatment in the United Kingdom. He wrote the book. His express aim is to forestall amputation. I think he has a good record on that. A guy in the ward I was on had been told at St. George’s Tooting that they would need to amputate his legs below the knee. When this guy got to Edmonds, he told the guy that actually they only needed to take off his big toe and part of the heel on the other foot.
The drill in the clinic is for the podiatrists to remove the dressing, take a look (sometimes a picture), clean the wound if that’s needed, then for Edmonds to come by and take a look at it and evaluate their proposed treatment.
The lessons I’ve learned over the year are these:
1) Be very careful of footwear including socks.
2) Ensure that the podiatrist listens to me when I talk about padding places that are tender or sensitive.
3) Keep control over my medications. My diabetes is in fairly good control at the moment but I am keeping a handle on it and will be consulting my GP within a few weeks to ensure that it stays that way.
4) When a treatment is proposed for a foot, ask the podiatrist/Dr. Edmonds “How will this treatment affect other parts of this foot or the other foot?”
I looked at the back cover of Edmonds’ book and there are something like 8 stages. I am at the “Ulcerated” stage. What I want to avoid is to get to anyplace further than that. Cellulitis is pretty bad, so:
5) Ask about cellulitis and how to avoid getting it.
I am learning on the job, so to speak. There are so many things that I need to keep tabs on.
One example is the District Nurses. The original fax to their office did not mention changing the dressing. So I raised that with the District Nurse who came yesterday and she said she would ring the clinic. Today the nurse who came had some of the materials that were needed for the dressing and said that a further fax had come from the clinic saying that she was to change the dressing. I asked her, “Do you have any of the antibacterial foam they use to cover the wound?” She replied “No, only cotton wool and a tubifex.” We took off the cast shoe and the pillow cast and I showed her the bottom of my foot. It was not wet. I told her, “Tomorrow please bring me a copy of the fax you received about this.” I will look and see what the actual instructions are to them. If they mention replacing the antibacterial foam, which is an article that the District Nurses don’t have, I will call the clinic myself on Monday and ask for a supply of that. There seems to be an impression at the Clinic that the District Nurses have automatic access to all the material that the Clinic carries. However, the District Nurses are always asking me whether the Clinic sent any syringes home with my antibiotics (it takes three syringes to administer the three different things they shove into my arm). There seems to be some unclarity as to who is actually responsible for the supplies necessary for my care. And both sides complain to me, the Clinic complains that the District Nurses are too lazy or busy to get the necessary supplies, and the District Nurses complain that the Clinic assumes they have everything and are uncooperative when it comes to providing the supplies necessary for in-home care.
So I am being more aggressive. Sorting it all out will take time. Patients who are too aggressive risk being struck off the lists of GPs, by the way. So one does have to be very careful. The NHS normally does that to uncooperative patients and whistleblowers on staff. At that point you have to go to the media and that carries its own risks with it.
So, yes, I will get there in the end. I am afraid of it all but I’m feeling a bit better about it. I may call upon my Masonic brethren through the Masonic charities to see whether they can offer anything further than what I’m getting now.
Thanks so much for being so patient and reading all the stuff that I’m writing about this. I do appreciate it all.
I just received the Crystal Light today–I thought that you were referring to what you had sent last year.
I will take any kind, as much as you can send. I love that stuff and there is no analogue available here. There are hardly any powdered drinks available. I guess that Brits don’t like them.
Thank you so much for thinking of me. If there’s anything you ever need from here please don’t hesitate to ask. Much love from London.
You’re Welcome!!
Glad to do it!!!
HUGS and XXX’s
Work with your nurses. They’re your primary caregivers. Get to know them personally. They will do much better by you if you tell them that you know they are the person you see every day, that they are the person who can best judge your daily improvement, etc. It’s not flattery; it’s the truth. (I have met the head of UNISON’s nurses’ division, and the president of the Irish Nurses Association too.)