The reason for the title of this
post will become apparent when you have read it. I am always very reluctant to use
my blog or social media to be negative and critical, but I feel the need to
pass comment on a matter which has already attracted much comment elsewhere.
Diabetes Care.
I won’t bore readers who already
know me with chapter and verse on my Diabetes story – it is in this post if you don’t know it. Suffice
it to say that I have been most fortunate, in that I have lived for almost 19
years with Type One with minimal complications, good health and no significant
impact upon my life and work. All I would say is that this is thanks in no
small part to my own efforts, the care and concern of my immediate family, and
in practical terms, the input of the health care professionals with whom I have
dealt on a regular basis. Diabetes is hard work, all day, every day.
Six years ago, as a result of my
consistently unproblematic condition, it was suggested to me by my hospital clinic
that I should be discharged to the care of my GP practice. At the time, this
was a welcome and appealing suggestion, which I willingly accepted. I had
always found the six monthly clinics a nuisance rather than any help: I had to
take an afternoon off work, which for a teacher means setting work for classes,
travel to a crowded hospital with (at the time) appalling car parking problems,
then sit for ages in a stuffy waiting room between various stages of a ponderous
and inefficient process (one room for weight and height, one room for a BG
tests, one room for seeing the doctor, another if necessary for seeing the
nurses.) I always had a brief and frankly unnecessary chat with a consultant,
who congratulated me on how well I was doing, exchanged a bit of small talk and
sent me on my way. All very nice, but of no clinical value if the truth be
told. The most meaningful and useful input was from the hard-pressed nurses,
who scuttled from room to room, stopping to chat in the waiting area to check
if I was OK for pens, was my meter OK etc.
The prospect of replacing all
this with a convenient appointment at my local GP, ten minutes’ walk from home,
was most attractive, and I took it. So for six years, I had this annual review,
essentially just a standard GP appointment, but with a doctor who is designated a
diabetes specialist in the context of the practice. I still had my twice yearly
HBa1c test, annual retinopathy check, foot check and all the right questions
from the doctor, so I was happy, and continued to have “good” control and a good
HBa1c result (albeit creeping slightly upwards into the 8’s)
Then came the GBDOC. Again, no need to repeat the
story – it’s here. But the GBDOC
meant that I started to be able to “compare notes” on diabetes care with others.
First of all online, then face-to-face with some, as I became more involved
with the community. I was becoming more interested in my diabetes, not least with
my children grown up and independent and my work life reducing to part-time
semi-retirement. I started to realise that I was perhaps being short-changed on
my care compared to others, and that perhaps I now knew more about diabetes
than the experts who were caring for me. This suspicion was increased when in
October 2015, after 6 months’ use of the FreeStyle Libre (which, needless to
say, I had discovered via the GBDOC!), I presented at the GP practice with a
sudden fall in HBa1c at my annual review. A clearly impressed doctor asked if I
had been “doing things any differently”, and when I mentioned the clever little
device that was enabling me to react to and control BG levels so effectively,
he was stumped. He’d never heard of what many believe to be one of the most
significant advances in diabetes management technology, and earnestly made a
note of the name of the device. Fair enough, I thought. He’s a busy GP, not a
consultant. And a nice guy, manifestly caring and conscientious.
I decided that it was time to see
whether the hospital knew any better, so I ‘phoned the helpline to the nurses
which I had been given back in 1997 and had never used. I also wanted to ask
about a DAFNE course as a way of adding to my growing expertise in diabetes
management. The helpline operates from 11-12 daily, is on voicemail until 10:59
and after 12:01 and engaged for the rest of the time. Have they heard of email?
After repeated re-dialling, I got through, only to be told that as I was no
longer a patient of theirs, I was ineligible for the DAFNE courses at their
hospital, and whilst they could advise me over the phone in response to another
query, namely about getting a new injection pen, they were really doing me a
favour. I thanked them courteously and resolved to get referred back to the
hospital.
And so it came to pass that yesterday,
Monday 28th November, I went on a sentimental journey back to the
clinic I had attended for all those years. Some things have improved: there’s a
smart new multi-storey car park, with modest charges and loads of spaces. The
hospital entrance has been rebuilt and extended, and feels like a provincial
airport or a railway station, with well-designed waiting areas, big-screen TVs
everywhere, and branches of Costa, WH Smith and M&S Simply Food. I actually
knew of these changes, as I had been to the hospital for other reasons (most
recently visiting a pupil newly diagnosed with diabetes as it happens!), but
even the clinic had moved on….a bit. There was an automated check-in system,
which worked. Someone had realised that it makes sense to do weighing, measuring,
handing over the urine sample and testing BG all in one room with two people,
rather than three rooms with three people. So far, so good. And having done all
that, I was seen within 15 minutes of arrival, and starting to feel I had made
a good decision.
But then I went in to see the
doctor. A consultant, I presume, although not the named person on the
appointment. No sign of #hellomynameis. He was a pleasant, courteous man, but
he just asked how I was, waited 5 minutes for a screen full of data to appear,
and told me what I already knew from my recent GP review, that I had “excellent”
control, and enquired about how I managed my diabetes. I told him that I had started using the
FreeStyle Libre 18 months previously and proffered my tablet screen full of
Libre data. He looked blank, then startled. He had clearly never heard of it. I
repeat, a diabetes specialist in a large teaching hospital at a clinic had not
heard of a device which has been the subject of worldwide interest and is
widely thought to be a big step forward in diabetes management. His response
suggested that I was extolling the virtues of some quack herbal remedy: he
showed no interest in my screens full of data, didn’t ask to see the scanner or
the sensor, and clearly wanted the conversation to end, and to move me on to
the nurse who would discuss my request for a DAFNE course.
Fortunately, my time was not
wasted. The nurse had heard of the Libre, readily agreed to refer me for DAFNE
and agreed that as I now had so much data about the minute-to-minute progression
of my BG, it made sense to try fully to understand the impact of different
foods on levels.
I returned home mildly amused
rather than annoyed, to be told by my daughter that there was a voicemail for
me on the landline. It was the hospital doctor I had seen about an hour
previously, asking me to phone back, giving a bleep number and saying “there
was something he needed to talk to me about” but that I had already left the
clinic. Yes I had left the clinic, because he and the nurse had told me to.
I was mildly concerned, my wife
panic-stricken. A phone message from a doctor asking me to call back and bleep
him, less than an hour after I had seen him. Surely a sign that something was
amiss. What hideous complication had reared its head that needed such an urgent
response? I needn’t have worried. He just wanted to know if I ever suffered
from any hypos, if I tested before driving, if I had had retinopathy screening
and a foot check in the past year.
Yes, I do have hypos, it’s what
happens when you have diabetes, but fortunately I know the signs and deal with
them. Yes, I do test before driving, it’s the law. (as well as testing 20+
times a day with this mysterious new gadget). Yes, I have just had retinopathy
screening and a foot check – it should be on my records. And that was it. He
had clearly forgotten some of the script, and needed to call me to get the
answers rather than risk being accused of negligence. I put the phone down and
reassured Mrs L that I was not suffering from some hideous life-threatening
condition which had shown up as a result of a finger prick blood test and a
sample of wee.
So there you go. My journey from
hospital care to GP care and back to hospital care. I think I’ll continue to rely
on the GBDOC for advice and information. There are several doctors there,
including consultants, who are happy to tweet and interact with patients who
aren’t even theirs. And there are hundreds of people with diabetes just a tweet
away, all with their own experience and expertise, all of whom are there to
help. In fact, I’ll just get by With a Little Help From My Friends.
Oh, and I look forward to meeting DAFNE next year.
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