I was first diagnosed with diabetes in 1976, in those days it was called juvenile diabetes or sometimes insulin-dependent diabetes, now it is called type 1 diabetes (because these days type 2 can occur in children, and insulin is sometimes used to treat type 2 diabetes). My diabetes was monitored by a six monthly appointment with a consultant paediatrician at the local hospital. My memories are of gleaming polished floors and patrician (and all male) consultants. The hospital was build before WWII with 70's extensions, and the paediatrics department was in the old part. Perhaps it was my age, but the enduring impression is of doctors whose opinions you could not question, not quite the consultant barking orders at you (like Sir Lancelot Spratt) but certainly everything he said was followed to the letter.
Appointments took a couple of hours because other than the consultation with the paediatrician there was also a trip to the pathology department to have several tubes of blood taken which were then tested for the following appointment (later on, finger prick tests - or more accurately finger jabs because they cut a wide hole in my finger - were introduced so I would have one of those as well as having blood removed from my arm). After leaving the hospital there was always a trip to the cake shop to make up for the blood tests (remember, this was the 70s). Although I do remember it taking time to go between various appointments in the hospital (as well as the blood tests) I do not remember waiting long to be seen.
When I reached 16, I was moved to the adult diabetic clinic in the same hospital where I was seen by a diabetes consultant. The adult clinic that was held in outpatients which was in one of the 70s buildings. To a 16 year old the adult diabetes clinic was a shock. My impression was that diabetes was a condition of the elderly and I was somewhat weird that I had an old people's disease. There must have been teenagers (or even middle aged people) who attended that clinic, but I never saw them, it was the old people I saw.
One distinct memory is queuing up for disposable needles at the hospital pharmacy. I had a glass syringe and so-called reusable needles. However, these blunted quickly which caused scaring and fat to disappear from my injection sites (30 years on, I still have lumps in my thighs from using reusable needles). Part of the problem was the impure insulin. When I was first diagnosed I took bovine insulin and after a few years I moved to porcine insulin; the hospital also started prescribing disposable needles. My control was much better on the porcine insulin, but since this was around the time I started using disposable needles I don't know if the improvement was due to the needles or the insulin. However, one thing is for sure, disposable needles made injecting quite a lot less unpleasant. I could not get disposable needles from my community pharmacy because GPs were not allowed to prescribe them (I was told: because of the cost), so I had to wait for a hospital appointment to get them.
My memories of the hospital adult clinic was not of gleaming floors, instead it was of long waits in waiting rooms full of old, ill people. I distinctly remember peeling paint everywhere.
During this time I had the same GP. She had a very much "hands off" attitude and since (other than the diabetes) I was healthy I never saw her. She did, however, make one of the best recommendations I received soon after I was diagnosed: she gave my mother the address of another family with a child my age who had diabetes. We learned a lot more about living with diabetes from that family than we did from any of the clinicians we talked to. Since diabetes is 24x7 and you can never "cure" it, learning to live with the condition is vital.
When I went to university (and later, when I got a job in the city where I had studied), I went to the hospital diabetic clinic (conveniently at the university hospital). The clinic was only for people of my age: young
adults, and discovered that I was not the only young person with the condition. The university hospital was newly built and modern. There was none of that light blue paint that seemed to be used everywhere in the hospital I attended when younger. Instead, there was light wood everywhere and they even had carpeted floors in the clinic. My appointments were always on time, this (and the location - I could get to the diabetic clinic from the university department where I studied via a short cut through the medical school) meant that I could attend the clinic without missing much lecture time. I do remember being seen more often than not by registrars - perhaps an attribute of a teaching hospital - who were mostly female and not much older than me. (Yes, I was a young man, I paid close attention to such things.) After graduating I got a job at the university, so again, it was convenient to take little more than an hour off to attend a clinic.
My treatment changed over this period. When I started at university I used disposable syringes (the needles were attached) and porcine insulin. After a couple of years I moved to human insulin and then after I graduated I changed to using a pen. The first insulin pens would deliver two units of insulin per click, since I had a big dose (around 20) it would mean clicking the pen multiple times making sure I remembered how many. On one occasion I went out to dinner with some work friends and just before the food appeared I went into the toilets to inject. I remember hearing the characteristic click-click-click of an insulin pen from the stall next door and was surprised to discover that it was the technician who worked for me in my lab. I had known him for two years and I didn't know he was diabetic, nor he know that I was.
Again, my GP had a "hands off" approach: the treatment of diabetes was the consultant's responsibility, although I did find that when I occasionally went to my GP he would point out that there was a connection between the condition I presented and my diabetes (usually the fact that my blood sugar was too high). My only contact was the regular request for prescriptions.
A decade later, married with a child, I moved house to follow my job. I registered with the local GP and at my first appointment I asked to be referred to the local hospital. "We don't refer patients to the hospital clinic: we have our own diabetic clinic". I had registered at a fundholding practice although I did not know what this meant. At the first diabetic clinic the doctor told me that he had just been on a course about diabetes. Was this supposed to reassure me by telling me how up-to-date his knowledge was? I don't know, but his next statement dismissed that reassurance: "... but since you've had diabetes for 17 years I think you know more about diabetes than me!" Oh dear.
The practice was a new build and close to my home. However, I worked half an hour's drive away (coincidentally, where I worked was a ten minute walk to the local hospital). Since diabetic clinics were during my working hours it meant that if I had a diabetic clinic I would have to take the morning off work. From memory, appointments were prompt, possibly because it was a new venture for the practice and they had given it more than enough resources. Since I did not see the doctor other than for my diabetes (at this point my control was much better due to the modern insulin I was taking) I do not know how long a patient would wait for a GP appointment.
To be fair to the doctor in the GP clinic, he did notice when there were changes in my eyes and he immediately referred me to the local hospital for laser treatment. This was like going back in time: the hospital was pre-war and some of it was Victorian. My memories are of long waits sitting on plastic chairs in corridors. The eye clinic did emergency work so often I would see someone lead in (or pushed in on a wheelchair) with bandaged eyes and then told my appointment would be delayed as they treated the emergency case. The clinic was just ten minutes walk from where I worked, but the long periods of time I spent waiting for appointments meant I would have to take an afternoon off work. Treatment during week days have a knock-on effect. I taught week long courses and it was not convenient for me to take a morning off halfway through the course, but if I was given an appointment for treatment I had no option, I had to attend on that particular day for fear of not being able to get an alternative date.
Then I changed jobs and moved house (now with another child). The town had two GP practices with surgeries 100m of each other. Both were modern buildings and since there was not much difference between them, we chose more or less at random. At my first GP clinic I told the GP that I wanted to be referred: this time I decided that I was not going to accept just the GP clinic. The GP said "that's fine, we will put you down as shared care".
So now I was seen by the local hospital clinic and the GP clinic. The contrast was marked. The hospital was largely pre-war and the outpatients was in a large 80s extension that had not been completed. The clinics were crowded, (mostly elderly people) and I never had an appointment on time. In those early days at some point during the afternoon a nurse would announce that the doctor had been called away to attend an emergency and so our appointments were delayed (a diabetic clinic for me was always a case of turn up at 2 and be seen after 5).
Although the outpatients department was new it was still tatty: I guess it had not been repainted since I had been built. The older parts of the hospital were worse. The hospital was made up of several building of various ages and there was a long corridor (a covered walkway) between them. For years it seemed that the hospital had no money to replace broken ceiling panels, so occasionally when walking along that corridor you could see the pipes and wires that were the very guts of the hospital. The eye clinic I attended was in the old part and it was cramped with patients waiting on chairs along a narrow corridor. There was one positive memory: whenever I attended the diabetic or eye clinic I had to take my diary because after my appointment I could make the next appointment and was given a specific time and date. This meant that there was even a possibility of ensuring that the appointment would not be when I was away on holiday, although I rarely got the appointment within the three or six months that the consultant requested.
The GP diabetic clinic was very different. In those early days the GP made a double appointment at a time when they did not have a surgery. These were very relaxed and concentrated more on how I felt I was coping with living with diabetes rather than the obsession with numbers shown by the consultant at the hospital. Conveniently, if the hospital required a blood test I could have the blood taken at my GP rather than the hospital. At the hospital there were always long waits and I would have to pay for parking. The GP surgery was a short walk from where I lived and the queue for blood tests was always short.
During this time my treatment changed again: I was changed to analogue short acting insulin. This was a disaster. My control went haywire and I put on about 15Kg. Eventually my wife told me I had to change back to the human insulin. I did and my control returned, but I was still somewhat wary since I had changed my treatment without the consultant's permission. In fact, at the next appointment the consultant merely said "no one else seems to have had a problem" and that was it.
In the new millennium things changed. The hospital started to be better funded and it got a loan from the Department of Health so the outpatients department was completed and the whole hospital redecorated. There was a new A&E department and the eye clinic got a new waiting room, and had had contrasting paintwork and signs in letters large enough to read when your eyes are dilated. The hospital was no longer dilapidated.
Since that time I have never sat in a full waiting room and appointments are always prompt. It has been a decade since I last heard a nurse explain that appointments are delayed because of an emergency case. Yet during this time I have been an emergency case myself - I phoned the eye clinic having suffered a haemorrhage in my eye and was told to go immediately to the clinic where I was seen.
But there are other differences. Now I cannot book an appointment at the clinic, instead the appointment is sent to me. I guess this is in response to the 18 week target so that the hospital can change clinics quickly. However, it is a real pain because you cannot guarantee that the appointment letter will get to you before the appointment: one housebound neighbour got an appointment through the post two hours after the appointment time. If you need to change an appointment then you have to phone up and inevitably you get an appointment later than the original, extending the time between clinics. The hospital also seems to regard appointments as easily moveable and often I will get a letter saying that "due to unforeseen circumstances, your appointment has had to be changed". During the time my eyes were unstable (I was told they could haemorrhage at any time) the consultant said he wanted to see me every three months, but the appointment system never took this into account. On one occasion I had three letters changing the appointment, the final one giving me a date 14 months after my last appointment (I phoned, and was given a "cancellation", but the system should not allow an appointment to be made that contradicted the clinician's opinion by so much).
My treatment also changed. First, I was put on an ACE inhibitor by the hospital. Next my long acting (basal) insulin was changed to an analogue, and after using it for twoi years I changed it back to the human insulin, again, because my control had deteriorated on the analogue. In addition, my GP put me on statins, and at a later stage, a calcium channel blocker when my blood pressure had shown it was rising from the recommended value. The ACE inhibitor, calcium channel blocker and statins are all preventative medicines. My cholesterol and blood pressure have been normal for most of my life (sometimes, from their reaction, I used to think that this disappointed the clinicians) but latterly my test results have veered off the recommended range for a diabetic and so I was prescribed the medicines.
With the appointment system aside, the hospital has improved immensely over the last ten years. The GP clinic has gone in the opposite direction. First to go was the ability to have blood taken for a hospital clinic. I was told that since the GP paid for the phlebotomist they would only draw blood for the tests the GP ordered. This now meant that for the blood test for the hospital (to be done two weeks before an appointment) I would have to travel to the hospital. Since there was no co-ordination between the GP and hospital, I would sometimes have a blood test for both within a few weeks - they would not share the results.
Then the diabetic clinic changed to a single appointment during surgery time, so now I had longer waits because my diabetic appointment was treated like any other GP appointment. After a while the diabetic clinic changed again, this time it was the practice nurse took them, not a GP. I learned fairly early on not to ask questions, because if I did, the nurse would say "you should make an appointment and ask the doctor". This surprised me because the diabetic nurse at the hospital was very knowledgeable, she knew far more about living with diabetes (including the various insulin pens and blood testing kits) than the doctors. The GP practice nurse was there merely to measure me.
This coincided with my GP (who ran the original clinics) taking time off for a lengthy illness, and then taking early retirement. However, when I went to another GP about a diabetes related issue he told me that none of the GPs were now specialised in diabetes telling me: "I really should do something about that". As I write this, the GP clinic still hasn't got a doctor who specialises in diabetes. Finally, at my last GP diabetes clinic, the practice nurse told me that they have lost a member of staff (I assume this means a cutback) and so rather than seeing me twice a year (to monitor my condition) they would see me once a year.
This tale has shown a progression of the treatment over time. Initially my diabetes was treated by a hospital consultant and both my GP and I never wanted to contradict what he said. Then during the fundholding period my GP wanted to do everything he could. After that I moved to split care and I found a level of assertiveness about my care. During this time my hospital care got better, but my GP care got worse. First my GP wanted to see me, then she was replace by a practice nurse, and now I am seeing the practice nurse less often, the next stage is surely me not being seen at all by my GP practice.
The government tell us that an important part of their "reforms" is self treatment. This is a nonsense. If you are a diabetic you cannot live without self treatment. It is a 24x7 condition and if you do not treat it, you die. The government implies that I, as a diabetic, am not treating my diabetes well enough, presumably because I am costing them too much. They do not understand that my incentive to have good control of my condition is to feel well. I do not even want to live longer, I just want to feel well, and because of that I am proactive in my own treatment. However, I know why the government wants to involve me more in "self treatment": they want to cut costs. The government does not have a measure of how well I feel, but they do have a measure of how much I cost them.
Self treatment is a natural end point in the relentless journey that is to "move care from hospitals to the community". The "community", ultimately, is the patient. The question is whether the move to self treatment will result in diabetics losing their control and costing the NHS more.