My foot is still bothering me. When I went to the foot clinic the day I returned from the United States, the podiatrist helpfully not only took off my left big toenail (her comment was: “That was the easiest toenail removal I’ve ever done.”—not that the comment made me feel any better) but also cut out a blood blister that was on the ball of my left foot. This was bandaged with a support pad and instructions to return in 2 weeks.
The wound has wept and bled continuously for the past two weeks plus. The podiatrist who saw me last Wednesday said that it was coming along fine, but I wonder. It’s still weeping. There is no pain of course (I no longer have any meaningful feeling in my feet) but it’s very inconvenient and is keeping me from moving around much. I am to see them again in two weeks (and continue taking the antibiotics, of course) but I will have to ask them then whether there is anything further they can do.
The kicker (appropriate for toes, I suppose) is that, strictly speaking, I don’t believe that this needed to be done. I have in the past had blood blisters under my skin on the sole of my foot. What normally happens is that the fluid, after a couple of days, dries out and, a few weeks or months later, the “scab” comes to the surface and is worn away as normal as the skin on my foot renews itself. I wasn’t even aware of this particular problem before they cut it out. So I’m wondering what I should do. In the future I might ask that they either don’t cut such things out (if they find them), or explain to me why the normal course of events is not good enough.
When I got back from the US, there was a letter waiting for me that informed me that I had a meeting with a lipid specialist and a dietician on June 30th. I was puzzled as at my last diabetic clinic appointment no one had mentioned that this was to happen. However, as I am nothing but dutiful, I trotted along this morning.
The lipid guy (who saw me 15 minutes late) was nice, and we had a good conversation, but some things stood out for me:
- Even though they had measured my height when I first went to the Diabetic Clinic, they insisted on taking it again. I am not convinced that the likelihood of my height changing from then (last August) to now is very high—though non-zero.
- About three months ago I went to take a fasting blood test for cholesterol. Everything was good to super-good (bad cholesterol is low, good cholesterol is high, total cholesterol is low). My diet hasn’t changed between then and now. He wanted to take another blood test (and this one non-fasting). I said that referring to the previous test in my records would be a good thing instead of sticking me again. Thyroid blood tests have been taken repeatedly in the past and found no problems. So why stick me again? He wanted to fool around with my feet, and I said that I had had enough fooling around with my feet in the past month for my own comfort.
- The dietician (a man, unusually, but his badge indicated “Head of Dietetics”, so male privilege wins out—also possibly a Friend of Dorothy) discussed various things with me. After looking at my usual intake he was rather glum. He said, “Normally after talking to a patient I can put my finger on an easy win for weight loss—cut out the gallon of ice cream a week, for example. You don’t have any easy wins in your diet. Portion control is the only way forward and, as you have said, sometimes that is very difficult when dealing with the kind of things you eat, such as pasta.”
- When the question of bariatric surgery came up, it turns out that I am just a bit too thin to qualify for it on the NHS. They require a BMI of 35; mine is 34.2. We discussed some of the new insights into bariatric surgery and diabetes that have surfaced recently, including the duodenal stent and duodenal resection, both of which seem to also lessen the amount of insulin resistance the patient experiences and in the preponderance of cases actually bring the blood sugar down to normal before there is any significant weight loss. He wasn’t too familiar with them (although he did mention the “duodenal stent” which is the technical name for the procedure I described to him) and, like all the other people I see, remains convinced that rather than try something of this nature it’s better to make the gluttons pay for their past sins. Of course, he didn’t put it that way, but there is a reluctance on the part of health professionals concerned with weight and eating to accept the fact that people who have had weight problems all their lives can greatly benefit from something more than a pat on the back and a kitchen scale.
- There was one piece of good news: my blood pressure, without having taken my diuretic this morning, was 127/73, which is almost totally normal. The doxyzosin that they started me on a month ago seems to have lowered my blood pressure significantly, even without the diuretic. This is good news, although I would prefer to have had it happen through weight loss.
So now I’m back home blogging about it. I’m relatively glum about all this, The fact that the NHS is not only not joined up between hospital trusts themselves and between hospitals and GP is bad enough: even within the same clinic they are not joined up between different health practitioners. This is worrying, because it’s now up to me to “coordinate” all this stuff on my own and pipe up when a doctor or other health practitioner tells me something or asks me to do something or undergo a test. As I get older, doing this effectively will be more and more difficult.
The really infuriating thing about it is that the doctors and health practitioners accept it with a sigh. When you bring it up they are as indignant as you are about it, but do not seem to think there is anything to be done about it. Yes there is: ensure that stuff is online and print out or give access to this information to those who need it and those who are collecting it. The form that the nurse who took my height recorded it on should have been printed out anew with that information on it already. The lipid doctor should have been able to look at my cholesterol tests from a few months ago and note them. If he felt that it was worthwhile to take them again for some reason, he could then have cogently explained to me the reason for retaking them (“We normally feel that such tests should be done every 3 months.” or “We think these tests are not accurate for [reason] and would like to do them again.”). His only reaction was “Oh, if you don’t want these tests that’s OK.” If he felt strongly about it he should have pressed a bit and given reasons. I suspect he always does these tests on people who see him with no regard to whether they had been done before.
The other example of this is the repeated appointments that they make for me to have my retinas photographed in order to ensure that I do not develop diabetic retinopathy. When I call (and get a recording) and explain to the recording that I’m already under the care of St. Thomas’s for diabetic retinopathy and do not need to go for screening, they respond with a new appointment. Only when I get an actual human being, who needs two repetitions to understand that I have it already and do not need to be screened for it, can I get the appointment cancelled.
When I explained this to the doctor at the Diabetic Clinic last year, he told me that it was his fault (at last, someone takes responsibility!). Apparently, when some people go for screening and are cleared, they are dropped from the computer and can later develop it without knowing it. These appointments are sent to everyone on the Diabetic Clinic’s patient list in order to ensure that anyone who was dropped is seen regularly. I think that there is probably also a government target for the number of retinopathy screenings that are done and, for every one they do, they get a certain amount of extra funding. Thus, they want everyone to have it done, whether they need it or not.
Now don’t get me wrong: the NHS is a great institution and has always given me the greatest level of care that was necessary. However, like all institutions it could do better. Being joined up would be a big step toward getting better. Those patients who cannot keep track of their treatment or who do not ask questions may have repeated tests or slip through the cracks. Let’s see how things develop.
The sores on my left foot have finally healed and it took less than a year. Not much less, though.
My retinopathy continues about the same, making me wonder how much longer I’ll be able to see. My eye doctor commented that there were lots of bare patches on my retina the last time I visited.
I no longer play the games doctors love to play with lipids and diet. Only one has understood some of what gastropareisis is and why it matters. I no longer take their medicines. I have to make my four visits a year in order to keep my supply of insulin coming, but that’s about it.