People with Diabetes
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Philip
Person with diabetes
Born in St. Alban's in 1938.
Diagnosed Type 1 in St. Alban's in 1947


Overview: Philip was diagnosed aged 9 and considers that it`s better to get diabetes young, when the body is more adaptable. He attended a grammar school, and regrets that he often used diabetes as an excuse to miss school. He left at 16, but acquired more qualifications later and became a successful accountant. His diabetes was well controlled and caused little trouble for most of his life, until he began to get early morning hypos a few years ago. (He finds the term `hypo` unhelpful, since it`s used to refer to anything from a mild sensation to complete unconsciousness.)
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Transcript...
10

(1) Tell me about your family background.

My father was born in 1900, lived near Watford, brought up in Watford.  He worked for Benskins Watford Brewery all of his life, it was taken over by Ind Coop at one stage.  My mother was born in South Africa but her parents were English.  My grandmother said she was English, but she had a very strong Irish accent, and she certainly was brought up in Dublin.  They lived in London and she was a dressmaker, and when she got married in 1935 they came out to the Watford area, and that‘s where they settled.  And I was born in 1938.

Would you say you were born into a middle class family?

No, well on my mother‘s side probably, because her father, my grandfather, was in the army turn of the century.  So, on that side probably yes, but on my father‘s side, probably not.

So, what are your memories of your early childhood, before your diagnosis?

Not a great deal.  Time seems to go very fast, and as a result of that I have difficulty pinning dates on things.  I certainly went to school early, I think I went to school at three and three quarters, because I‘d made a lot of progress at home - my mother used to teach me to read and write and so on, and they thought I was ready for school.  And the local school did take four pluses, in my case it was a four-minus.  Of course, you come across things you don‘t expect - I mean, I didn‘t know that when you wrote at school, you didn‘t use capitals all the time, and this kind of thing, so although I was quite advanced in many things, I had different things to learn.  But, I did have a year at a different school in St Albans, and then went back to the original school, because I was only going over the same things I‘d learnt before because I‘d started school early. And I liked music, and I liked to sing, so I‘m told,


(2) and I suppose I did all the things that young kids do. And really, I think, everything just was quite normal, until I acquired diabetes.

How did your diagnosis come about?

Oh, the classic symptoms, all the classic symptoms.  I got very thin, I was down to three stone ten pounds, and this was aged nine and a half.  I was very thirsty, kept going to the bathroom a lot etc etc, all the usual things.  And my mother then took me to the GP, and he did the test, and that was it.  He didn‘t say in front of me what was wrong with me, he sent me out of the room, because I think he wanted my mother to explain to me, but I‘m not entirely sure my mother knew very much about diabetes at all, because there was no history of it in the family, so far as we knew.  So we went home, and then she told me at home that I would have to have injections for the rest of my life.  I don‘t think I was unduly worried about that.  She told me that I wouldn‘t be able to eat sugary things, and that I was to go straight to hospital that afternoon.  And so we had an afternoon cup of tea, and she said “this is the last sugar you‘re going to have in your tea!”.  And by that evening I was in hospital in St Albans, and this was, I suppose, about mid December ‘47.

Now your medical notes say ‘46, would you like to comment on that?

Well, as I said a moment ago, I do get a bit vague on dates when they‘re so long ago, and I‘d always thought that I‘d had diabetes since age eight, partly because I know I was considered very young, and secondly because they encouraged me to do injections myself straight away, and they were saying that this is a very young age to start doing injections.  And I honestly believed that, later on this was, that I‘d started at eight, and it was only when I came across some notes from my mother‘s possessions that I found, in fact, dated letters from myself from the hospital to her, confirming that it was nine and a half.




(3) How long were you in hospital?

I was in hospital about three weeks, and this was over the Christmas period.  Because I was regarded as an emergency admission, the only space they could find for me was in the men‘s ward.  I think the men were quite tickled to have a young boy of nine, and I didn‘t really mind because I found that somebody was interested in football, so.  But they did transfer me into the children‘s ward in time for Christmas, so all the usual Christmas things took place.  If you were in hospital at that time, you had to be in bed, so all of the adjustment on the insulin was based on being very immobile, and of course when I came out and led a normal life, the insulin needed quick adjustment, but this was the way it was.  But yes, three weeks I was in.

Can you remember how you were taught to do injections?




(4) So far as I can remember, the nurse did the first few injections and then really supervised me to do my own, just watched, and it‘s a question of pinching up the skin, and a much larger needle than they use now.  And I was on soluble insulin twice a day, can‘t remember the dosage, and it was on that regime that I actually left the hospital and continued for the next six months.

How did you test your sugar levels?

They used to have something called Benedict‘s solution.  My mother used to do this, I‘m pleased to say, but we had a test-tube and Benedict‘s solution and the appropriate number of drops of urine through a dropper, and she used to boil it up on the gas stove, on one of the rings on the gas stove, and she used to hold the test-tube with a garden peg because it used to get so hot.  And we used to do that, I think, three times a day, if I can remember rightly.  I think we did it in the mornings, and lunchtime - I came home from school, and at some point in the evening.

What were you taught in the hospital about diet?

Yes, very strict diet, measured in carbohydrates.  I had a diet sheet, which had been at one point hand typed and duplicated, equalling a certain number of units of carbohydrate, spread over breakfast, lunch, dinner and late night meal.  And that stayed until a bit later on, I can‘t put a date on this, when they started talking about calories instead of carbohydrates.  And I remember my next diet sheet that I had was a little eight page booklet with a blue cover with a piece of corn or barley on the front, and it had things like exchanges and so on on it.  And it was a little more free, shall we say, than the old carbohydrate one.

So this first carbohydrate diet you had at St Albans, was there any name for these kind of units of carbohydrate that you can remember?

I can‘t remember in particular.

No blacks or reds, or?

No, I don‘t recall that at all.  No, it was all done in numbers.

And how did you measure your food?

Well, we used to do it on the scales at home, but as time went on, my mother knew - she could look at a potato and knew how much it weighed and so on, so eventually the scales




(5) died out and we just did it on what looked to be the right amount.

Have you any idea how long the weighing went on?

It probably went on for a year or so, until she became expert on it, as far as I can remember.

Just while we‘re in the hospital, were you given a deliberate hypo or given any training on how to recognise symptoms?

I certainly wasn‘t given a deliberate hypo, but they did warn me of the typical symptoms.  And certainly I would have had hypos while the insulin was being adjusted, and obviously they must have been typical of what I was told and what to expect, because I didn‘t have any problems with them.  And just simply, I seem to remember they had a glass of glucose water, very syrupy stuff, horrible!

How did you manage at school?

Well, I used to come home to lunch, because school was only about three quarters of a mile away, and so there were no problems with the diet.  And I don‘t recall ever having any serious hypos, we‘re talking now about the junior school.  I don‘t recall having any serious hypos at school or during lessons.  I think I was told to take a lump of sugar before I participated in sport, but no, there really weren‘t any problems at all.

What about the attitudes of teachers and pupils?

Teachers, well by this time, of course, at age nine, I only had two years to go in the junior school, and the teachers were very sympathetic.  Pupils knew no different.  Pupils didn‘t know what my particular problem was and I didn‘t advertise it, so again there weren‘t any problems.




(6) And how do you feel your mother coped with your diabetes?

Well, it took her a lot of work.  She was testing my urine three times a day, she had to be sure that she was buying in the right food, I seem to remember that it may well have been the tail-end of rationing at that point.  But she was very strict with it, because she believed that, you know, given a medical condition you‘ve got to cope with it, and you‘ve got to do all the things you should do.  So, I mean, she was very good from that point of view.  She, as I hinted earlier on, I don‘t think she knew a great deal about diabetes first of all, but I think she read about it, and we affiliated to the Diabetic Association at a very early age, so the books used to come out and she used to read them.  And a lot was happening on the diabetic front at that, it was the early years really, and so things were changing, thoughts were changing, new insulins were coming in and so on.  And, after six months, I got a bit out of control, I wasn‘t really in control again.  And I used to go to the GP, there was no diabetic clinic as far as I can recall at St Albans, I used to go to the GP, and he said "I think you need another dose of insulin of a lunchtime".  And at this point she wasn‘t very happy.  She thought that three doses of insulin a day was really getting a bit much, and surely it couldn‘t be right, and I think she took it into her hands then to refer me to the University College Hospital in London.  And as I said, I had gone out of control, so I then went into University College Hospital in the following June, six months after the diagnosis.  They were certainly much more up with it, and I was in there for a fortnight getting re-stabilised, and they did think that the third dose was not necessary.  And I was re-stabilised on a mixture of a new insulin called Globulin, I think it was called, which was a longer lasting insulin, together with the soluble.  And so I went back to two injections, morning and evening, of these mixtures, and they could be mixed up in one




(7) injection in one syringe.  So I was re-stabilised, and things went fine from then onwards.

How did that London hospital compare with the St Albans one?

I think they were more expertise, they were more up with it, after all it was a London teaching hospital, so I wasn‘t just seen by just one particular doctor, as I was at St Albans.  There were several who were up with it and used to come and see me, and obviously groups of students, being a teaching hospital.  And I just somehow, even at that young age, I somehow felt that they were the experts.

Now this was 1948, the year in which the NHS was founded.  Do you have any memories of, for example, whether your mother paid the GP before 1948?

Oh yes, she did, yes.  I think it was something like seven shillings and sixpence a visit.  I don‘t recall anything about the payment for the hospital treatment, but certainly every visit to the GP was chargeable.

And would that have been a hardship for your family?

Yes, because she didn‘t work, and, you know, wages were fairly low.  And yes, we went through some quite hard times then.  I even remember when we went shopping in Watford, if we got off the bus one stop earlier it was two pence less, and we used to do things like that, and hide from the insurance man when he came round and so on.  So yes, it would have been a hardship for her.

Now the time you spent in UCL, were you given further training on diet and blood sugars?

I can‘t recall this.  It may well have been the point when I changed diet, or they may have just simply updated the diet that I was on.  But I don‘t remember anything too drastic there, so I don‘t think the original diet was probably too far out.

When you look back on this very strict regime, what do you feel about it?

Well, it‘s the way thinking goes, isn‘t it?  All the time, thoughts are changing, and it was thought to be the best thing at the time, and understandably so.  I mean, if the problem is too much sugar, then you‘ve got to do something about it, and so the obvious thing is to cut it out.  And it‘s only just lately, isn‘t it, that we‘re now on what they call healthy diets etc, and




(8) I think that we were doing the right thing at the right time, let‘s just simply say that.

Do you feel it‘s served you well?

Oh yes, I think so.  You get to learn what you can eat and what you can‘t eat.  And occasionally, if the blood sugar‘s fairly low, you know you can take a chance, and that‘s particularly important when you‘re growing up and you go out for a meal occasionally, you‘ve got to be careful what you‘re eating.  And invariably you go to a restaurant, and on the menu for pudding are all these fancy things, gateaux and so on, which you don‘t go for, and you look down the list and the only thing you eat is ice-cream, and you think, well, you know, can I risk ice-cream or a portion of ice-cream?  And on those days when the blood sugar‘s low, yes you do risk it, and when you don‘t feel that it is low, then you cut out that course.  You‘ve got to go your own way on these things, and so much of it is by previous experience and even intuition.

Can you talk about your experiences at secondary school?

Well, I went to St Albans county grammar school.  It was quite a long journey.  My mother asked the County Council what they could do to help, given that I‘ve got to do an injection when I get up, and have breakfast, and I can‘t vary the times too much because of the necessary period between injections and food and so on.  She thought they were gong to send me by taxi, but in fact they gave me a bus pass!  But that was all right, I didn’t mind that.  But of course I couldn‘t go home to lunch because it was far too far away, so I had to take sandwiches, so for the whole of the time I was there I took sandwiches rather than school food.  And the need to come back in the evening on time was important, because I couldn‘t afford to miss the evening injection, so all the times when the class misbehaved and were kept in after school, I was let go.  There weren‘t any real problems at all.  The only thing was, I had to be careful with PE, because some of the sports were really a bit too energetic, and, you know, I couldn‘t afford hypos, and so I didn‘t do things like cross country running and rugby and so on.  But generally, there were no real problems.  The boys used to realise that I had something or other wrong with me, but I think most of them didn‘t




(9) quite know what it was, didn‘t involve the teachers at all.  And I think there was a year when I‘d had some difficulty, I can‘t remember what it was now, and I actually got voted at the end of one year as “the boy who‘d made the most progress despite having setbacks”, or something like that, which now I think about it was quite amusing, but rather nice.  But, no problems really.

Would the medical profession have advised you that you shouldn‘t play rugby?

I certainly asked my GP about it, and he felt that I did have to be careful.  I shouldn‘t, given the time that diabetics take to recover from injuries and cuts and grazes etc, I shouldn‘t go looking for them.  And certainly, if there were likely to be hypos at school which would affect my schoolwork, well we certainly didn‘t want that, so I think his view was, use your own discretion.  And he certainly didn‘t write me out any sort of note, but I remember mother wrote out a note explaining these things to the school or to the PE teacher.  And I think it was discretion really.

If you had to eat sandwiches rather than school dinners, and couldn‘t stay behind for detentions and so on, did your diabetes in anyway isolate you?

Well, as I didn‘t particularly like school dinners anyway, I was quite pleased to have sandwiches - have things I did like!  As regards not staying behind, well that was a bonus, because about that time I started to do an evening paper round, so that was rather good!  But no, I didn‘t feel that I was isolated in anyway, and I don‘t think anybody else did.

Coming on to the teens, that were probably not called teens then, and we think of smoking, drinking, drugs, sex.  Did you have ‘teens‘ in that sense?

Not the way they do today.  I mean it was a gradual development.  One sort of started to question one‘s mother‘s views about things, and "why am I doing this?" and "why can‘t I do that?", and so on; all the usual things.  But I don‘t think that there were any things that were peculiar.  I started to take more of an interest in sport, participate in sport, music in particular I seem to remember.  Obviously I went out more and so on.  But there were no real problems in that I suddenly became a rebel or anything like that.

Smoking and drinking?

No.  I‘ve never smoked and I had no desire to drink.  When it was a question of going to a pub, and we‘re obviously talking about age eighteen plus now, to be social, I think I drank something like a half a cider or something like that; I mean, nothing too drastic.  I‘ve never had any problems with smoking or drinking.




(10) Did your diabetes affect your education?

Only to a minor extent that, if I was feeling a bit hypo in the mornings when it was time to go to school, I simply didn‘t go.  I suppose I ought to have gone when I felt better, but once having not gone, I didn’t go at all that day.  I used to get coughs and colds and things, and being diabetic I tend to think they‘re a bit worse than the average, and used to spend time off when I used to get coughs and colds.  I probably had more time off school than I should have done, really, on reflection.  My absences were quite a lot, and they could have been halved, I suspect, if I‘d have been very hard and harsh and serious, but whether that affected the end result in education, I‘m not sure.  I certainly didn‘t study as hard as I should have done - we all say this, I know, but I was certainly very capable of doing better than I eventually did.  I think it was partly the need to be pushed.  In other words, I did what I had to do and that was it; I could have done much more.  So consequently, when I left school, I had three or four O Levels and I probably could have got five or six.  And of course, as a result of that, then I needed more, and I had to go to night school to get them after that.  But there we are, I mean, that‘s the price you pay.

What did you do after you left school?

Well, I left school at the end of the fifth form.  I didn’t go into the sixth form, because the only people who went into the sixth form in those days were people who wanted to go to university or into the civil service.  You‘ve got to remember that this was pre-sixties even, so the number of universities were few and far between; all the old originals: London, Durham, etc.  So, and I didn‘t want to be a teacher, and you could get into the civil service by taking a civil service entry exam, and I thought probably I‘d do that.  However, my mother came into the picture again and spotted an advertisement in the local treasurer‘s office, well not local but in the treasurer‘s office, for a junior accounts clerk, and I thought well, the civil service exam‘s not ‘til September, I could do this for four




(11) months.  And I went there, and of course that was it then - I was sort of embedded in local government.  And I stayed five years at Rickmansworth Urban District Council, as it was then, and went through all the various departments: accounts, rates, wages, etc, etc, so I covered more or less all the financial side of things as a junior clerk. 

And how did you manage your diabetes during that period?

Well, again, I used to take sandwiches for lunchtime, but so did many people, because there was no staff canteen.  It was, well it wasn‘t much different from being at school, because I used to leave much about the same time, I couldn‘t go home lunchtimes, and I got home, well all right, not quite as early, but not too much later.  So there really wasn‘t much difference.  And my diabetes was in good control, you know, as it had been really since those old days when I went to UCH.  And, of course, I was told to adjust the insulin myself right from the earliest stage, and so that I was able to do.  And I started doing very energetic things, like cycle speedway, which really is energetic, and it was fine; it didn‘t affect it.  The treasurer and his immediate people were aware, of course, that I was diabetic; in fact I had to take a medical before I joined the council, but there were no problems.  The thing about diabetes is, in my view, that you don‘t go round advertising it, because if you volunteer it without being asked about it, people think "well why is he telling me this, is he about to have a hypo or something?".  And I‘ve also found that people become a little suspicious of you, they give you funny looks etc.  Shouldn‘t, but it‘s just the way the public is, although, of course, with more and more people being diabetic these days it‘s becoming less so.  But I‘ve always found say nothing; it‘s nobody‘s business except your own and your immediate family, and I‘ve never advertised it at all.  And unless people wanted to know or I had medical or something, nobody did know.  And I‘ve never had a serious hypo.  When I talk about hypos, an expression which I dislike intensely by the way, I‘ve never had a serious




(12) hypo - that is been out completely, ever in public.  In fact I‘ve only been out four times, and twice of those was when I had ‘flu on successive mornings and had to get the paramedics out.  So long as there are early warning signs of a hypo and I can take a couple of glucose tablets, that‘s fine, there‘s no problem, and need involve nobody.

Why do you dislike the term hypo?

Because it‘s misconstrued, it can mean a whole series of things.  In fact, I actually said to the doctor at the diabetic clinic last time I went "what does hypo mean?", and doctor said "it means low blood sugar", I said "yes”, but people‘s interpretation of low blood sugar is you lying prostrate on the floor, out, or something completely mild, as I‘ve just said, which is put right by a glucose tablet.  And even on forms like driving license forms, they talk about "have you had hypos?", and I always write “of course I‘ve had hypos”, diabetics do have hypos, but that doesn‘t mean to say you‘re completely out.  It means that you need a bit of sugar, and the early stages, which don‘t affect anybody else, go away.

Did any of your colleagues in Rickmansworth know that you were diabetic?

One or two might have done.  There was another junior clerk there who had bad asthma, so we tended to sympathise with each other a bit, but no, I mean I never discussed it and never had occasion to.

How much contact did you have with the medical profession from your diagnosis onwards?

When I finished my treatment at University College Hospital, I became a member of their diabetic clinic, so I used to go every six months there.  And I did that until I started work, and then it wasn‘t convenient to go, have a day off to go to London, so I joined the local diabetic clinic in Watford.  So obviously, as regards diabetic matters, then I spoke to the people at the diabetic clinic; all other matters I would go to my GP.  But in fact, I mentioned about coughs and colds etc, at about fifteen or so I suddenly stopped getting coughs and colds, I stopped getting anything, and I didn‘t actually see my GP, or different GPs over the years, I would say for about thirty years.  I reckon from about fifteen to forty five, I never saw a GP.  All I did was write notes saying "can I have a prescription please?".  And so it was the diabetic clinics were the only people that I actually saw, and the fact that I only used to go six months is, I think, a fair indication that things were always in good control.  And, you know, I‘ve been very lucky, they always have been in good control.  And I suppose you might say that the only reason I started seeing the GP again from aged forty five onwards, was when I started getting things that one gets a bit later in life.




(13) What was your next job?

When I left Rickmansworth I went to Elstree, again on the finance side of the local authority.  I stayed there for six years.  I used to cycle to work, I started doing this after a year or so at Rickmansworth - it was about eight mile in each direction, which I was going to do just for the summer, but in fact I did it for ever.  And then Elstree was much about the same distance, maybe a mile less.  I used to cycle there as well - used to keep me fit.  And at Elstree, it was very similar, I couldn‘t come home to lunch obviously, used to continue to take sandwiches, and nothing really very much changed.  Then, I‘d always played a bit of table tennis, and I took up playing league table tennis at that point, and during that first year, not only did I pedal home after work, then I peddled back again in the evening once a week to play table tennis.  But then a year later, of course, I was able to drive, and so that stopped.  But I continued to cycle all the time I worked in Elstree.  Even though I had a car, I continued to cycle to try to keep fit, and that cycling to work only stopped in 1965 when I joined the London Borough of Harrow, this was when the big London boroughs were just formed.  And really, in distance, it wasn‘t too bad, but there was a large hill at Bushey, and you went up one side and down the other, and that was really quite a killer and I couldn‘t really do it, so that‘s when I started driving to work unfortunately.  But, of course, I was very much into cycle speedway, as I said, and therefore I was having to keep fit and doing a lot of cycling doing that.  And nothing was very different at Harrow, except they were such a huge organisation, of course, they had their own canteen, but I still continued to take sandwiches.  I was still very suspicious, shall we say, and still being very careful.  And I was at Harrow for two years, then I went to Watford for two yeas doing a very similar kind of thing.  I met my wife at Harrow and we got married in 1968, and this was the time when I was working at Watford, and she continued to work at Harrow.

How did she react to your having diabetes?

Well, I thought I‘d better tell her at some point.




(14) I think I told her at a fairly early stage, because, you know, before things got too serious.  She wasn‘t in the slightest bothered; in fact she virtually brushed it aside.  But, the very interesting thing was that in the early days of knowing her, while I was at Harrow, I actually went into hospital for re-stabilisation, and this was the first time I‘d actually been back in since University College Hospital, and in fact the third time out of three that I‘ve ever been in for stabilisation.  And I went into Watford Hospital for, I don‘t know, a couple of weeks I suppose, and by this time things had changed quite dramatically.  I‘d become resistant to Globulin insulin and I was switched to PZI, so I was having soluble and PZI. People told me I would never have become resistant to soluble because there was nothing in it to cause any problems.  So I was re-stabilised.  Now I can‘t say positively whether I was re-stabilised on PZI in this spell at Watford, or whether I was already on it and it just needed some adjustment, I just can‘t recall.  But I was certainly in there for a fortnight, but they didn‘t keep you in bed.  They realised that you needed to move around, and they actually sent me home for some afternoons sometimes.  And that was okay, and my wife-to-be used to come to see me while I was in there.

What years are we talking about?

This would be about 1966 I would guess, early ‘66 it would be, maybe something like January, February ‘66.

Was it a specialist diabetic clinic?

No, I obviously had been referred to the hospital by the diabetic clinic in Watford, where I had been going for some while every six months, and they decided that I ought to go in for a period of stabilisation, but I don‘t think it was a specialist unit.

Are there any other changes that we ought to note for 1966, for example was the diet any less strict?

I think it may have been slightly less strict.  I don‘t think at that stage they got on to what we call healthy diets, I think they were still measuring calories, but whereas previously particular items of food had been measured in numbers of calories and in groups and so on, I think that was starting to get less strict.  I mean, they didn‘t say so, but I gained the impression that was so from reading the diabetic magazine and so on.  So I think changes were taking place very gradually.




(15) What was your next job after Watford?

1969 I went to work in London, something which surprised me, because I didn‘t particularly want to work in London.  I never thought working in London was particularly attractive, and why I did it I don‘t know, but there was a job going, internal auditor at University College London.  The good thing about it was that, at that time, I had moved to Hemel Hempstead, and the train journey was twenty six minutes from Hemel Hempstead to Euston, and I could be at my desk within eight minutes of getting off the train, so in fact it wasn‘t bad at all.  And, I didn‘t used to take sandwiches then; by that time I think things were slacking up a bit in thought about diets and so on.  I mean, obviously one still had to be careful, but I knew, obviously, what I could eat and what I should avoid, and I did have college lunches then.  And there was nothing else really to change it from the previous regime.  I did that for four years, my first child was born in 1972 while I was at UCL, and then in 1973 the treasurer said to me "do you want to take over Westminster Medical School?", he said "they need a finance officer".  And, of course, Westminster Medical School, as indeed all London medical schools are very tiny compared with a huge organisation like UCL, but anyway, I said “okay”.  By this time I‘d passed all my professional exams, I should have said that I was studying for professional accounts exams, and I‘d actually passed them at that stage.  And so I went to Westminster Medical School in 1973 as their finance officer.  It was quite good having medics about actually, because it saved me going to the diabetic clinic - I just simply saw one of the consultants every so often.  And the one unhappy thing regarding diabetes happened while I was at Westminster Medical School, because, as I‘ve been saying all along, there had been no problems, good control etc, did more or less what I wanted when I wanted, and so on and so on.  I started having problems with my gums,




(16) and I kept getting abscesses on the bottom of my teeth, which meant that my teeth had to be taken out, until eventually the dentist said to me "look, you really haven‘t got that many left", he said "just might as well get rid of them all, you‘ll only get abscesses on them", and so regrettably I had all of my teeth out.  And I was only in my mid thirties, and I really was not happy with this ‘cause you can‘t grow new teeth.  And that was, I think, the worst thing that had happened to me.  I mean, you can‘t possibly say that was due to diabetes, but, I mean, I know it was, and I think the experts would say yes, this is one of the problems that people do get with diabetes, they get problems with gums and so on.  So, I was a bit, as a say, a bit shaken by that, but it‘s the only real thing that had happened to me up to then, and indeed the worst thing, I think, that happened to me at all, even since then.  So there we are, so I had to have false teeth.  And I carried on at Westminster Medical School until 1980, when I‘d really had enough of working in London.

You‘ve described a very full life, with obviously a lot of evening classes to get all these qualifications, and sport, so away from home a lot.  How did you manage testing your sugar levels?

I have always tried to test as and when I can.  I mean, it‘s true that being away lunchtimes, I‘ve not been able to do a lunchtime test, but over a period of time you get to know your condition.  I know when my blood sugar is high, I know when it‘s low.  When it‘s in between, that‘s fine, and I don‘t care what it is when it‘s in between, because I know it‘s not one extreme or the other.  And most of the time, obviously, it is in between, and so for the most part I don‘t actually need to test.  I do test these days as a matter of course, probably just to chart it.  But I think you know yourself; you get to know yourself, you get to know your condition, you get to know what you can do, what you can‘t do etc, and I think that you can control yourself.  You don‘t actually need medical things, tablets and suchlike, to do this, except, of course, behind all this,




(17) you always know you have a need for insulin; that we can‘t avoid.  But even without doing tests, I know, from how I feel, whether I need to increase the insulin or decrease the insulin or whatever, so you live with it.  I think this is one of the advantages of having it as a child is that you grow up with it, and so you know yourself, and as many doctors say at diabetic clinics, "you probably know more about it than I do".  Many of them say this, and you know your own conditions; you don‘t know other people‘s conditions because it affects us all slightly differently.  And in fact, unfortunately, one woman, who I was going to have a lunch with to talk to because I knew her husband, and he knew I‘d had this condition for a number of years, and his wife had just become diabetic and obviously there were problems, and he said "can you come and have lunch and talk to her about it", but unfortunately before we had lunch, she died.  So, you know, that was unfortunate, but I‘m not sure I could have told her too much, because we‘re all slightly different.

When you were doing these very vigorous sports, speedway and table tennis and cycling to and fro, can you remember how you adjusted your diet or insulin?

I never adjust my diet, I always keep it the same.  Insulin, I tend not to adjust my insulin, unless the blood sugar is very low when another injection is due, in which case I would adjust it, or, in fact, even delay the injection.  But I would control low blood sugars by glucose tablets, sugar and so on, and I always make sure I’ve got plenty of lumps of sugar and glucose.  One of the problems with table tennis is you don‘t know whether, until you start playing, you don‘t know whether you‘re going to have a tough match or an easy match.  If you have an easy match then you can get through it without really overdoing it, but if you have a really, really tough match, and they‘re all going to the wire, then really I‘m eating glucose tablets virtually during the whole of the evening.  But I mean, that doesn‘t matter, as long as I know what I‘m doing.  And I‘m very encouraged by reading stories like Steve Redgrave, and people who‘ve risen to the top of their sports who are diabetic, and the amount of sugar, etc, that they eat absolutely amazes me, but they have to do it and they obviously do well in doing that.  So that‘s why I say we‘re all different and we all need slightly different controls, and we need to know ourselves.

Would you have sounded as confident as this in your teens?

Probably not quite so, because, as I said, you grow up with this.  Having had it at such a young age, I know no different.  I can‘t remember, hardly, not having it.  And the good thing is, that getting it at age nine, the body adjusts to it; the body is still growing, and it grows without the pancreas working properly, and it compensates in many ways, strangely enough.  And many of the side effects which people tend to get, I regret to say, if they get diabetes in later years, don‘t materialise, because the body is still growing, the body is strengthening, the body is getting used to it, and it knows no different.  And that, strangely, I know this is a very strange thing to say, but by getting diabetes very early, it actually does help you through life.




(18) What did you do after you left London?

Well, the London medical schools were being merged following the Flowers Report, and Westminster was being, well it wasn‘t being merged, initially it was due to be chopped, but it eventually merged with Charing Cross.  But by that time, I‘d had enough of working in London, and I obtained a job in Oxford.  This meant moving house, and we‘d had a son by then as well, and it was, as with all people, it was a difficult decision because it interrupted schooling etc.  But however, we came to Oxford, and nothing in particular happened in coming to Oxford.  Obviously, I had to find a new diabetic clinic, which was the Radcliffe.  I continued on the same insulin that I‘d been on for some while, except that at some point I changed from, I think it was when I came to Oxford actually, straight away in about 1980, I changed from the PZI to Velosulin and Insulatard, and eventually they got replaced by what‘s called human insulins.  But that change took place in Oxford, and they simply said "well, this is what you do, you‘re capable of adjusting it yourself, go away and do it, and only tell us if there are any problems", unlike the old days when you had to go into hospital to have your insulin changed.  So that was okay.  And there was more modern thinking about food and so on.  They never used to ask me anything about my diet, I seem to recall, at the six monthly visits, as though it was almost falling into disuse, but nobody ever said so.  But obviously one knows what to eat and what not to eat, so I wasn‘t unduly worried about that.  And I don‘t think any more markers happened until I suddenly started getting hypos early in the morning, about five o‘clock, six o‘clock,




(19) and at the same time, I was increasing the morning Insulatard, because I was getting rather high blood sugars in the afternoon.  And it‘s only when you look back on your records, and this is the good thing about keeping records and not throwing them away, you realise how long it is that this process takes place before you realise it‘s urgent.  And I looked back, and I suddenly realised that my morning Insulatard has gone up two and a half times over a period of about five to seven years: a clear indication that it wasn‘t working properly, and that, no matter how much I increased it, the resistance, shall we call it, was setting in.  I don‘t necessarily think that that was connected with the same thing as the early morning hypos, because the obvious thing to do is to reduce the evening Insulatard, and I reduced it and reduced it until I was taking none, and I still got these early morning hypos.  And both of these problems are only just in the process now of being resolved, and as I said, you know, this started out seven years ago, although we didn‘t realise at the time that this was going to be the pattern.  And now I‘ve gone over to completely different insulins, and for the last fortnight, I haven‘t had any early morning hypos for the first time for many years. But it is a point where you‘ve got to be careful, that you can become resistant to certain insulins.  It‘s not a common thing, but I mean it‘s a bit like injection sites, where after a while, many years, you can become resistant to those particular sites, and need moving.  And my particular problem is, having been diabetic since the age of eight, I can‘t move much more; I‘ve been all around the body, practically.  And unfortunately, of course, we‘re back to square one, when my mother said "three injections a day is really not acceptable", and I‘m on four injections a day now, and they think this is good.  And, you know, with the lack of sites, I‘m actually quite concerned for the future, but there we are.




(20) You mentioned that the Oxford clinic appeared to be less strict about diet.  Were there any other changes that you noticed when you came to Oxford in 1980?

Well, I think it‘s the increase in the number of diabetics was starting to cause problems in hospitals.  One afternoon a week for a diabetic clinic was no longer enough, they required two afternoons or three afternoons or whatever, then found that there were little units being set up where there were specialists there all the time, such as we had in the Radcliffe Infirmary eventually.  One of the disadvantages of these little special units, and of course that‘s transferred now up to the main John Radcliffe Hospital, but one of the disadvantages, that you never see the same person - every six months it‘s somebody different.  Now you might say that‘s good, because it gives a different viewpoint on things, but in fact they contradict each other.  I mean, I actually had the opposite thing said on successive visits.  One person said "we must try our very best to make you lead a normal life” etc, and the next one said "now you‘ve got to be very strict looking after your condition", and the two don‘t work out.  There are other examples, but I mean that‘s just one.  And so you do get a lack of continuity, and they‘re always looking back at the previous notes, of course.  And I‘m sure this is one of the reasons why I had this particular problem going on for about seven years, because nobody has seen it as their particular responsibility to look after it.  They just simply look back to previous notes, maybe the previous six months and so on, but they don‘t look back and say "goodness gracious, seven years ago you were on just a fraction of the insulin you‘re on now, something must be wrong".  So there is that lack of personal care, shall we say.  Also, the specialist diabetic nurses, I think, are a very good thing.  We didn‘t used to have such a thing; you saw the doctor or nobody.  And I think having specialist nurses are really good, because you can phone up with a particular problem, and the nurse will either invite you in or talk to you, whereas with a strict appointment regime with the doctors, you couldn‘t do that.  And I‘ve experienced this fairly recently and I‘m very grateful for it.

Do you find that the specialist nurses know enough?

Oh yes, yes, they‘re obviously trained in diabetes and, oh yes, I was very impressed with my fairly recent visit, when I, as I said I‘ve just recently changed insulins, they weren‘t working at all well, and I actually really felt I had to go and see somebody.  And I actually went without an appointment, and said "can I see somebody please who can give me some advice here and now?", and one of the diabetic nurses just happened to be free at that moment, and discussed it with her, and I came out feeling much better.




(21) Have you had any complications?

Interesting word.  When I was small, my mother used to say "you‘ve got to keep very strict, you‘ve got to keep a strict control.  If your blood sugar goes too high for too long, you‘re going to get complications in your old age", and I said "what are complications?", and I don‘t think she knew.  But I can always remember her saying that, and indeed we turned the pages over of the diabetic magazine and we read “complications”, and they‘re still using the word now.  But yes, I think we‘ve got to be careful in distinguishing between things which we might well get anyway with advanced years, and things which are caused by diabetes.  And some of the things, of course, we can‘t say either way, and some we can.  Yes, I‘ve had things going wrong fairly recently, and I say fairly recently - it seems to be a milestone the age sixty.  I was absolutely fine when I was fifty nine and three hundred and sixty four days, but after sixty I seemed to get whole range of things.  So the sorts of things I‘m suffering from, which I don‘t think at all are diabetes-related, are things like stomach acid, reflux.  I can‘t think that that‘s particularly diabetes related - people just get it at this sort of age.  I‘m pleased to say it‘s very well controlled.  Prostrate, of course, is known to the sixties.  On the other hand, going to the other extreme, you could say that things which are diabetic related would be skin problems.  I mean, I‘ve got a lot of skin problems, warts, all sorts of variety of warts as my GP calls them, and poly-something or others, and they never go.  This is the problem; once you‘ve got them, you‘ve got them.  And it‘s well known, I think, in the industry that diabetics do suffer from skin problems.  I‘ve already mentioned my gums.  That wasn‘t a recent one, of course, but that was something else.  You get the middle ground then, you get the things like high blood pressure.  Well, I mean, we all know that you have to watch your blood pressure at forty plus, fifty, or whatever, and there‘s no particular reason to think that it‘s brought about by diabetes.  I know you‘ve got to be more careful if you‘re a diabetic but…, so I do suffer from high blood pressure.

What about problems with your eyes?

I‘ve been very lucky with my eyes.  My eyes have always been good, from a diabetic point of view, and still are.  However, having said that, I mean I have had problems with my eyes.  They got very dry at one stage and were really heavy, and this went on and on and on, and eventually, I couldn‘t get much satisfaction, and I kept going back to the eye clinic and asking different people.  But anyway, what I was going to say was, in looking for that, they discovered something else.  They discovered that there were new blood vessels growing in the front of the eye instead of the back of the eye, and I had to have laser treatment, but they didn‘t necessarily think that was anything to do with diabetes.  And eventually I found that the problem with my heavy eyes, or dry eyes or whatever, I won‘t attempt to describe what it‘s called, but it‘s something which affects the lids and the glands, and I have to apply hot compresses to them twice a day.  These are things which I can do myself, I don‘t need any medication for them, but that‘s an unfortunate thing.  I don‘t think that‘s anything to do with diabetes, and the sorts of things they look for every time at the back of the eye, I‘m pleased to say, are not there.

What about feet?

Yes, they like to look at my feet at the diabetic clinic, and they‘re pleased with what they see, because my feet are actually very, very good.  I‘ve no corns, no carbuncles, no hard skin, no in-growing toenails, in fact somebody said "they‘re perfect feet", so I‘m very lucky.




(22) Will you talk about your most recent treatment?

Yes, well, this is what I was mentioning a few moments ago, that because of these two particular problems, Professor Matthews recommended a change of insulin entirely.  And I‘ve only changed in this last three weeks, and I‘ve gone over to Lantus and NovoRapid.  It‘s very interesting this, because the NovoRapid is supposed to rectify the extra carbohydrate at mealtimes, whereas the longer-term insulin, lasting for twenty four hours, is supposed to give a good base.  The danger is, I‘ve found, that one has to be careful, in that you might use the NovoRapid as a means of keeping the blood sugar down at certain times, rather than compensating for a meal.  In other words, instead of having a slight increase in the Lantus, you tend to increase the NovoRapid, so you do have to keep - I‘ve only been on this for three weeks - but you do have to keep asking yourself "am I adjusting the right one?".  And the theory is that, as I said, the NovoRapid is supposed to compensate for meals.  I put this to the test yesterday.  I went out for the day and I didn‘t eat, and therefore I didn‘t inject, to see whether it would work - talking about lunchtime only - and it did work to a certain extent.  I felt it was slightly high, but I suspect that I‘m not quite on enough Lantus yet, so it was quite encouraging.  I think that when I am on the right Lantus, then it will actually give more flexibility to one‘s activities.  So I‘m battling to get the right balance on these two at the moment.  They didn‘t work hardly at all for the first eleven days, and I actually panicked, and that‘s why I mentioned a few moments ago I went in to see the nurse, because I thought this is no good whatsoever, and she persuaded me to persevere.  And on the twelfth day, it was completely the opposite, it was absolutely marvellous.  I had the best day I‘ve had for years I should think.  And although it hasn‘t been quite as good since, I think that only minor adjustments are required, and if it does settle down I shall be very pleased.

Can you describe a typical day now of your regime: diet, exercise and so on?

Well I‘ve retired from




(23) full-time work now, so I would...  Well, I wait for the house to empty, because I don‘t want to get in the way of people going to work, because the family are all here.  So I wake up about half past seven, and when I‘m sure they‘re gone, by eight o‘clock, I start to make movements.  So I do a blood test, and if it‘s high-ish, I‘ll do my two injections, Lantus and NovoRapid, immediately, but if it‘s not, and I‘m talking about before shaving etc, but if it‘s not, if it‘s low-ish, then I won‘t do the injection until just before I‘m ready for breakfast.  So I have for breakfast, I have cereal, I have a couple of slices of toast and maybe some hot tomatoes on them, and a live yoghurt.  Then, well there‘s no knowing what I might do, I mean, I might do things in the garden if the weather‘s good, I might go shopping or whatever.  So everyday is slightly different.  But I do have a mid-morning break for a coffee and a couple of digestives, then go on to lunchtime, do another blood sugar and another injection of NovoRapid, and for lunch, I tend not to have a heavy meal for lunch, I tend to have a sandwich.  This is actually where I disagree with the experts, because the NovoRapid is supposed to take up the energy released from a meal, but I don‘t have heavy meals, I‘ve always been trained to spread the meals out, little and often, and it doesn‘t coincide with the theory of NovoRapid, and so slow take-up bread, you know wholemeal bread, etc.  So we have this slight problem, which I‘m not sure how we‘re going to get over this, but anyway, there we are.  So, I also have a four o‘clock cup of tea, again maybe a digestive or a Rich Tea or something with it.  And then we come to the evening meal, which we tend to have seven-ish.  Again I would do a blood sugar test and a NovoRapid injection.  Now a couple of times it‘s been very low indeed at that point, a point I mentioned to the nurse, in which case I leave the injection until after the meal,




(24) because I‘ve had to have a couple of glucose tablets.  Now if I don‘t do the injection at all, as I didn‘t on one occasion, then the combination of the meal and the glucose tablets will send the sugar levels up quite high as the evening progresses, so I think it is necessary to have an injection, but it should be after the meal rather than before.  And then, if I‘m out for the evening then I‘ll obviously… it depends what I‘m doing.  If I‘m at a concert then okay, I‘m not doing much; if I‘m out playing table tennis or something and I am doing a lot, and I‘ll probably need boosts of glucose etc.  But if I‘m at home, then I must confess I do have nineses, I do have a cup of coffee at nine, and maybe even a digestive with that as well!  But, then at bedtime, I don‘t inject at bedtime because there‘s no main meal under this theory, although I do have a cereal going to bed.  And this is the test of whether the NovoRapid is being used to compensate for a meal or being used to add to the Lantus, because if there‘s no main meal and no injection, then during the night the blood sugars should be satisfactory.  In my case, at the moment, they‘re not particularly satisfactory, which leads back to, I think, needing more Lantus, and I shouldn‘t be tempted for a booster injection of NovoRapid going to bed.

You‘re now approaching sixty years of diabetes, I think, fifty-seven if my maths is right.  What would you say have been the major improvements in treatment that have affected you?

Well the diet, the diet‘s much more flexible these days.  We‘re encouraged to eat healthily, we don‘t have to weigh our food anymore, and we can adjust NovoRapid, or whatever insulin we may be using, if we go out for a heavy meal, so we‘re much more flexible these days.  It doesn‘t particularly worry me that we‘re having all these healthy foods, because I‘ve always eaten that kind of thing anyway.  I think also, as regards medical staff, because we‘ve now many years of experience of diabetes and the treatment of it, and the fact that more and more people are being discovered with it, I think there is a change of attitude amongst medical staff, in that they do expect you to look after yourself as best you can and not want constant supervision,




(25) hence the, if you‘re okay, then they only want to check you every six months.  But as I mentioned earlier, there is a conflict in views of different doctors, and I think with experience, you just have to take that with a pinch of salt and do what you think is best, because after all you are the expert on yourself.

Have you noticed any difference in attitudes of the medical profession towards patients over fifty seven years?

Yes, they call you sir, well some of them!  Yes, there is a kind of attitude whereby you‘re an individual, you‘re not just one of a group of people, and they try to make you more comfortable.  And they tend not to make you feel like an idiot - in others words, they want you to understand your condition, and they don‘t want to be supervising you if you‘re capable of looking after yourself.  They‘re quite keen that we shouldn‘t have long waiting times.  And I suspect that with more people being diabetic, as I‘ve mentioned earlier, and therefore the specialist groups have been set up with more clinics and more people there to staff them, things are certainly much better.

You mentioned being treated like an idiot.  Were you ever treated like an idiot?

That‘s perhaps a shade strong, but certainly yes, some doctors seem to think that you know very little about medical things, and, you know, you want constant guidance.  And I‘m sorry to say that this actually happened to me quite recently, when I disagreed with everything the doctor was saying to me, and she…  It was an unpleasant visit to the diabetic clinic, I’ve got to say, and I got nothing from it, and I largely didn‘t agree with most of what she said.




(26) How large a part of your life has diabetes been?

Well, it‘s unavoidable, isn‘t it?  When you‘ve got diabetes, you‘ve got to look after yourself; you can‘t afford not to look after yourself.  And as I mentioned earlier, I always try to look after it myself, without mentioning it to other people or making a point about it, because we‘re all human beings, and we want to be treated as human beings and we want to be treated all the same, and therefore I don‘t want people to treat me any differently to how they would treat anybody else.  Now there are people, I know, who do want to be treated differently, because they like to be made a fuss of, and, I mean, that‘s just one method which can be employed of drawing attention to oneself.  But no, I think that if people don‘t know then that‘s fine, because it doesn‘t affect them, and therefore I‘ve gone about my life doing the things which I want to do.  I wouldn‘t say it‘s held me up in any way, and it‘s only been restrictive in terms of diet to some extent, and particularly in the earlier years, and the need to do injections, which can be inconvenient if you‘re out somewhere.  I know we have these pens, and they say, "oh, you know it‘s very easy to do injections these days".  It‘s not doing the injection, it‘s where to do it, and that‘s the point which I think they miss.  But no, I think that, you know, I‘ve led the sort of existence which I probably would have led anyway.

Would you have any message for somebody being newly diagnosed with diabetes now?

Well I would say, certainly get to understand what it is, the problem that you‘ve got, and try to do all the things which you‘re told to do, because it doesn‘t pay to ignore the advice, and I know some people have ignored the advice.  And just try to lead as normal life as possible, subject to keeping control of yourself.



 

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