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Pam Dyson | | Research DietitianBorn in Lincoln in 1954.
Overview: Pam Dyson has been involved with the nutritional management of diabetes and obesity for 25 years. She began her working life with the Medical Research Council at the Dunn Nutrition Unit in Cambridge and since then has practised as a community dietician, diabetes specialist dietician for both in and out-patients and has been closely involved with clinical research. Since 2004, she has been employed by Oxford University as a diabetes research dietician. Her main interests are in the delivery of diabetes dietary education, behavioural aspects of lifestyle change and weight management. | [View Full Interview] |
| Transcript... |
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| (1) Tell me about your background
| (1) Tell me about your background.
Well, I‘m one of
four children. My father was in the Air
Force, he was an officer in the Air Force, and he and my mother married quite
young, and managed to have four of us in four and a half years. I can‘t even think how she coped in the
beginning, but that‘s it. And we
travelled a lot when I was very young, and, as was common at the time, by the
time we all reached the age of eleven, we were all sent to private boarding
schools. I think the Royal Air Force
actually helped to fund that. So, I went
to a boarding school in
Bournemouth, a private
girls‘ boarding school. And I think I
must have been thirteen or fourteen when I happened to read an article in The Times
about dietitians, and decided that‘s what I wanted to do. So, I‘m one of these people who knew very
early on what it was they wanted to do, and, from then on, my O Level and my A
Level choices were all about what I wanted to do and where I wanted to be. And I think I‘m a natural scientist, anyway,
so that wasn‘t an issue. So, I left
school after A Levels, and went straight up to
Leeds
to study to be a dietitian.
What kind of
people were studying with you?
This was in
1973, when I went to university. It was
a female-dominated profession; in fact, I think it was five or six years on
before the first male arrived to study dietetics. And everybody came from a similar background to
myself; I would say strictly white, middle class, well-educated girls, with a strong
interest in food and telling people what to do.
What was the
degree called?
It was actually
the first intake of a new degree course, and it was called a degree in Human Nutrition
and Dietetics. It was a four year
course. We spent the first two years at
university, then we spent a year out working, which included nine months in a hospital
as a student dietitian, and then we went back for our final year.
Describe the
course from year one.
Year one started
with backgrounds to biochemistry, physiology, statistics, general nutritional information. There was almost no clinical work at all, in
the first year; it was basic nutrition. By the second year, there was more application, so we learnt about
different diseases, where diet would be important, and I think that was probably
the first time the word diabetes was mentioned.
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| | (2) Can you remember what you knew about diabetes
by then?
I remember
knowing nothing about it at all. The
only vague memory I have is, when I was at boarding school, one of the girls
who was in the year above me was diagnosed with diabetes, and she was sent home
and never seen again. Now, whether that
was because her parents felt the school couldn‘t cope, or the school felt they
couldn‘t cope, I don‘t know. But it
seemed like something that was socially unacceptable. That was the only experience I‘d had of
diabetes, before then.
So, tell me
about your first clinical experience.
My first
clinical experience was when I was a student dietitian at Addenbrooke‘s Hospital,
and in those days, it was a trial by fire. The senior dietitian felt very strongly that young dietitians should be
exposed to what happens in a hospital on their first day, to see whether they
could cope or not. So, on my first
morning, we had to go through a ward round on the renal ward. Now, in those days, dialysis wasn‘t as available
as it is now, and there were two people who were actually dying of uraemia -
they were in chronic renal failure - on the ward. So, they had catheters in, they were very
yellow, and obviously very unwell. And
it was a very difficult ward round to do, and my fellow student, who I was
studying with, fainted, and that was not uncommon. And I don‘t know why this was done, but I
think it was possibly the idea that we should toughen up, and know what we were
going to be exposed to. I don‘t think
it‘s the best way to expose young dietitians to what goes on in hospital, but I
think I can see... I think I can understand the principle behind it, although I
don‘t agree with it.
How old were
you?
I was - this
would be in 19... - I was twenty; yes, just twenty.
Describe what
happened at Addenbrooke‘s.
Addenbrooke‘s
was a teaching hospital, so there was a lot of research and a lot of teaching
going on, and, interestingly enough, it was at the forefront of renal work, so
there was a huge component of renal work. What happened, if you want a typical day, is we‘d start work at
eight o‘clock in the morning, and
every patient who was on a special diet had a different coloured sticker,
according to the diet they were on. So,
low-fat was yellow, the different renal diets were orange and green, I think,
and diabetes was red. So, when they were
given their menu cards - and they were given those twenty four hours in
advance, so they had to choose their meals for the next day - they were given a
card with a sticker on, and they ticked what they‘d like. They were given three or four choices for a
starter, a main course and a pudding. And
we sat there every morning and went through their choices, and changed them if
we thought they were inappropriate. And
these choices were then delivered to that patient, so quite often a patient got
a meal that they hadn‘t chosen in the first place. So, that‘s what we did for the first one and
a half hours every day. Then, for the
rest of the day, if you were covering outpatients, you‘d go and sit in the
outpatients‘ clinic and see outpatients. If you were covering inpatient work - and we did every... we were
exposed to all the different things, so one week we‘d be doing renal, the next
week we might be doing the gastro ward - so we would spend the rest of the day
on the ward or in outpatients, always supervised by a dietitian, a qualified
dietitian.
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| | (3) Were many people admitted to the wards?
I think because
Addenbrooke‘s is a large hospital, yes, there were, and specifically for people
with diabetes. Certainly in those days,
all people with Type 1 diabetes were admitted as inpatients to be stabilised on
insulin. We didn‘t do anything as
outpatients with Type 1. The people with
Type 2 diabetes were seen as outpatients, but in terms of diabetes, the
admissions were nearly all Type 1. Of
course, someone might come in with a broken leg, who happened to have diabetes,
but, of course, that wasn‘t the reason for their admission.
Just sticking with
the ward, before we go to the outpatients‘ clinics, can you remember what the
treatment was for the Type 1s who were admitted?
When they were
newly diagnosed on the ward? The first
thing we did was they were taught the rudiments of how to inject, of course,
using an orange, in those days, and, of course, in the seventies, we were still
using the old metal syringes, and all the rest of the paraphernalia. We taught them how to sharpen their needles. This, I have to stress, wasn‘t done by the
dietitians, it was done by the nurses. What the dietitian had to do was go and teach them about their diet, and,
in those days, we had very strict prescriptive diets. The dietitian‘s job was to decide what the
person would eat, and they then prescribed a diet. And, of course, we used the exchange system,
which is a way of restricting carbohydrate.
Can you explain
the exchange system?
The exchange
system was not well understood by many dietitians, and certainly not understood,
in my opinion, by the majority of patients. It was based on the idea of a ten gram carbohydrate exchange, so we
would give people lists of food that contained ten grams of carbohydrate, for
example, a small apple contains ten grams, a thin slice of bread from a small
loaf contains ten grams, two cream crackers contains ten grams. So, we would give people a long list of foods,
all of which contained ten grams of carbohydrate, and they counted as one
exchange. We‘d then say to them, for
breakfast you can have, for example, three exchanges, so they would choose
three items from the list. It was
supposed to give people more flexibility and choice, but I think created a lot
of confusion for a lot of people.
Were people
thinking in grams, back in the 1970s?
I don‘t think
people thought in grams at all, everyone thought in ounces, and that‘s why it
was decided to call a food that contained ten grams of carbohydrate one
exchange. So, you wouldn‘t say to people
"you‘re having thirty grams of carbohydrate", you would say
"you‘re having three exchanges". So, I wouldn‘t think most people understood that one exchange contained
ten grams of carbohydrate, they just knew it as one carbohydrate exchange.
And did people
mainly work on sight - you know, a small apple - or was there a great deal of
weighing?
When I first
started as a student, although this had disappeared by the time I was qualified,
what we used to do for people with Type 1 diabetes is we gave them a little set
of balances to use, and we would tell them to weigh their apples and their bread. And another way of doing it, we tended to use
exchanges, but sometimes, especially for the Type 1s, you would say, they would
have four ounces of apple, or three ounces of bread. I can‘t imagine someone preparing a meal, and
not being able to sit down and eat it until they‘d weighed everything, and cut
off a certain amount to make sure their foods weighed the right amount. It seems inconceivable, now, that we were
expecting people to do that, but it was the way things were taught, at the
time.
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| | (4) Were you given a specific time to talk to
patients on the ward?
It was felt, at
the time, that most people with diabetes would be in for about a week or so,
while they got stabilised on their insulin. And the dietitian was expected to turn up, when summoned, in order to
give the person necessary advice about their diet, and that was usually judged
by the ward staff. I distinctly remember
being called in, one day, to talk to a man, and it was
half past twelve. And I walked in, and we started talking, and
he obviously wasn‘t able to concentrate at all, and I think we both got very
frustrated. I felt I was explaining
things to the best of my ability, and he was quite open about the fact he had
no idea what I was talking about. And it
turned out that, at the time, they‘d delayed his lunch in order to give him a
deliberate hypo, so he‘d know what the symptoms were like when he went
home. And I think he did not like the
experience at all, and certainly it was not a good time to be talking about
food to him.
Was that
standard practice, for each person to have a deliberate hypo?
For people with
Type 1 diabetes, in Addenbrooke‘s, in the seventies, they were given deliberate
hypos, so they knew what the symptoms were like. Now, interestingly enough, some people have
found that very useful, and I‘ve heard them say to me "that was so useful,
because when I went home, I knew what the symptoms were, so I could recognise
them". Other people have intimated
me that, actually, that‘s an abuse; that deliberately doing that is an abuse
and shouldn‘t be done. And I think it
depends on the individual, as to how they reacted to that. It‘s no longer practised, I hasten to add.
Any other
memories of life on the wards?
I have a distinct
memory, of the time, that in Addenbrooke‘s, the dietitian‘s office was right
next to the kitchen, in the bowels of the building, and that was because dietitians
were also involved in food production, especially for the special diets. So, it was the job of the student dietitian,
every day, to go into the kitchen and produce the puddings - the low-sugar puddings
- for people with diabetes. So, we would
make milk puddings with sweetener rather than sugar, we would make custard without
sugar, we would make pies and sweeten the fruit with a sweetener. And so, we were involved in food production
as well. It was somewhat disheartening,
when you‘d spent all this time producing this food, to go on the ward and see
it had all been left!
Now tell me your
memories of the Addenbrooke‘s outpatients‘ clinics.
The outpatients‘
clinics, for people with diabetes, took place on a Monday morning. They were enormous clinics. There would be six or seven doctors in
clinic, each seeing ten to twelve patients. Most patients would arrive at similar times. They didn‘t have timed appointments, they
just all turned up together, so we‘d have a huge waiting room full of people
waiting to see the doctor. And the
doctors would just work their way through the patients, to the best of their
ability. We didn‘t have a specific
office for a dietitian, but as diet was perceived as important, the dietitian
had to be in attendance, but we actually did our consultations in the waiting
room, surrounded by other patients, while the patients were waiting to see the
doctor. I don‘t think the idea of
patient confidentiality occurred to anyone, at that time. So, that‘s what we did. And it was very difficult, for both the dietitian
and the patients, to try and have some kind of frank exchange of views, with
everybody else listening.
Particularly
given the shame attached to overweight?
I think it was… People, typically, have a great deal of difficulty
in talking about what they do, especially when they feel they‘re going to be
judged. And when you‘ve got an audience
of a hundred, on top of that, I think it‘s almost impossible to do any kind of
effective work.
|
| | (5) One of my strongest memories, from that time
- which was very embarrassing and humiliating at the time, but which has been
invaluable to me - was, as a student, I was expected to see people with Type 2
diabetes, as it was considered mild and a student could cut their teeth on
them. I was always supervised by a
qualified dietitian, but I was sent to see a middle aged woman, slightly
overweight, to have a discussion with her about how things were going. Of course, in those days, we had no measurements
of glycaemia, like A1C or blood glucose monitoring. We would just test their urine, and she had a
very strong positive test - there was a lot of glucose in her urine - so we can
guess her diabetes was not well controlled. And I started doing the diet history. All dietitians were trained to take a diet history; you would ask people
what they‘d eaten over the previous twenty four hours. The previous day, of course, had been a
Sunday, and she‘d had a big roast dinner for lunch. She was only supposed to have four exchanges,
and she‘d actually had five, so I started on the ridiculous conversation about:
next time she had Yorkshire pudding, she shouldn‘t have custard with her apple
pie, or maybe she should have one less potato. And it was talking on this system of exchanges, and I was basically
telling her that really she had had five exchanges, and she should have had
four, and this was how she could do it. And she was getting crosser and crosser, and eventually she turned to me
and said "why you should think I should sit here and let a slip of a girl
tell me what to do". And I was
completely dumbfounded by this, on loads of counts, but firstly because she was
daring to challenge me. I was the expert
here, I knew what I was talking about, she didn‘t, and she had no right to say
that to me. But actually, more than half
of me thought she‘s absolutely right. What
right do I have to sit here and tell her what to eat? She didn‘t choose diabetes. This is something that‘s happened to her, without
her consent, and here‘s some know-all telling her what she should be doing
about her Sunday lunch. I think it was
compounded by the fact that two minutes later, of course, my supervising
dietitian bustled along said "now, just be nice to her, she‘s only a student. And anyway, if you don‘t do what we say,
you‘re legs will drop off or you‘ll go blind". Now, I‘m sure she didn‘t actually say that,
but she did intimate that it was really important to stick to your diet, because
otherwise you would suffer the complications of diabetes. And, of course, this just made this woman
crosser. And I have to say, on
reflection, I‘m so glad that happened, although I was so embarrassed, because,
of course, everybody else was listening, and more than half of them felt sorry
for me, but they also felt the woman had a good point.
Now, you can‘t
remember whether your supervisor exactly threatened loss of legs or sight, but
do you think such threats were used by dietitians, at that time?
I know for sure,
because I‘ve heard that since, and this was in the eighties, when I was working
in
Bath. And I‘ve actually heard a dietitian say it,
so I know people did say that. And, in
fact, we were trained by a very interesting woman at
Leeds,
who used to give us useful phrases. For
example, when we met someone who was overweight, who was struggling to lose
weight, and would say things like, you know, "no matter what I do, I can‘t
lose weight", she recommended we come back with the reply "no fat
people came out of Belsen". I have
never used that phrase, and I never would, but that was something people
thought about, in those days. But in
order to get your point across, it didn‘t much matter what you said.
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| | (6) Then you went back from your Addenbrooke‘s
placement to continue with your
Leeds degree. And at the end of that degree, how much would
you say you‘d learnt about diabetes?
I think most
students, at that time, felt they‘d learnt far more from their student
placement than they did during the theoretical stuff they did at
university. I think we probably spent a
fortnight on diabetes, in whole, while I was at
Leeds,
and in the last year, we spent a week on it. And typically, we would take a disease for a week: we‘d look at most
aspects of it, we‘d spend a day in the kitchen doing diet cooking, when we‘d
have to produce a day‘s meals for someone with diabetes. So, probably about a fortnight, but no more
than certainly we spent on renal disease or any of the gastro diseases.
And then, what
was your first job, after you got your degree, in 1977?
When I left
Leeds, I think it was pretty clear that I didn‘t want to
be an inpatient dietitian. I don‘t think
I had the capabilities or what it takes to work on a ward. And I‘ve always been interested in research,
and I was lucky enough to land a job at the Dunn Nutrition Unit in
Cambridge. I was working for the Medical Research
Council as a junior nutritionist, and we were working on a family food survey
that was sponsored by what was then MAFF, and is now DEFRA. And basically, we just took a random sample
of people in
Cambridge,
knocked on their doors, and asked if a family would complete a food survey for
a week, and, of course, there were some people with diabetes included in this
survey. I think what struck me then was
the difference between what people with diabetes were eating, and what the rest
of the family were eating. I
particularly remember one child, who‘d been invited to a birthday party during
the week that they were filling in everything they were eating. And instead of going to the party and eating
the food that was provided, because they‘d been given such a strict diet, this
child‘s mother actually packed her up her own tea, and she had to take this. So, while the rest of them were enjoying
sausage rolls and birthday cake, she was eating this special meal that her mother
had prepared for her. It was further
compounded, about this time, that I started to have some personal experience of
diabetes, because my step grandfather, who was then in his mid sixties, was
diagnosed with Type 2 diabetes. And, of
course, he was very worried and concerned by the diagnosis, and assumed I was
the expert and asked me a lot of questions. He was widowed, at the time - my grandmother had already died - and he
was receiving Meals on Wheels; he got special diabetic meals from Meals on Wheels. But as treats, I used to make him special
cakes: fruit cakes made with Sorbitol instead of sugar, and I‘d often take him round
a pudding or a pie, again made with Sorbitol instead of sugar. What I didn‘t realise, at the time, and I
should have done, is large amounts of Sorbitol do have a pronounced laxative
effect, and he did enjoy the cakes, but suffered for it afterwards.
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| | (7) And what did you do after your research post?
The money ran
out, as it often does in research, for the MAFF contract I was working on, in
1981. I was married and living in
Cambridge, at the time,
and didn‘t want to move; my husband was settled there. So, I looked for a local job in
Cambridge, and, in fact,
they‘d just started a new post for a community dietitian in
Cambridge, and I applied for the job and got
it. So, I then took on the community
dietitian role. Now, at that time, it
was actually a job share; I was working part-time. I was asked to take on organising
mini-clinics for GPs, because diabetes had already started to become more of a
problem. The hospital clinic at Addenbrooke‘s
couldn‘t cope with all the outpatients it was seeing, and it was decided that
GPs should see people with Type 2 diabetes in their own surgeries, and, as a
result, they organised mini-clinics. So,
one afternoon a fortnight or a month, each GP surgery would have a mini-clinic
for diabetes, when there would be a GP with a special interest, a nurse, who
would examine feet and this kind of thing, and as a community dietitian, I
would go along to do a diet consultation.
Did these GP
clinics already exist in 1981?
These GP clinics
were a new idea then. GP mini-clinics were
a new idea, and it was the driving force of our local district community
physician which meant that we‘d set these up, and I think they were very
successful. It certainly sharpened my
interest in diabetes, and made me realise that it‘s a disease that‘s largely
managed at home by the person concerned, and that doctors, dietitians and
nurses actually don‘t have much input, except for offering some advice.
What advice were
you giving to patients in these GPs‘ mini-clinics, in 1981?
By 1981, there‘d
been a bit of a sea change in how people treated diabetes, and there was a move
towards high fibre, high carbohydrate, low fat diets. So, exchanges were no longer used, in lots of
cases. The emphasis was still on no
sugar, so people with diabetes were typically advised to avoid all foods
containing sugar, but they were encouraged to eat plenty of starchy carbohydrates,
like bread and potatoes and pasta and rice. And around this time, the British Diabetic Association - now Diabetes
UK
- published
the first nutritional recommendations for diabetes. And they did stress that a healthy diet for
people with diabetes was low in fat, high in fibre, and at least half the plate
should be filled with starchy carbohydrate. So, this was very much the ethos of the time.
And how much did
you find that GPs knew about diabetes?
It was very
interesting to see, in the mini-clinics, the majority of GPs who were running
the mini-clinics were, by definition, interested in diabetes, so their
knowledge was good for the time. You have
to remember, during the seventies, nobody knew very much about diabetes
anyway. We still didn‘t have many blood
glucose monitors; they only started appearing on the market in the eighties,
and we were mainly giving them to people with Type 1 diabetes. So, it was actually very difficult to assess
what was going on. We had very crude
tools, usually urine tests, so we couldn‘t really assess what was happening,
and I think the drugs available for treatment, I only remember us using
Metformin, Tolbutamide and Chlorpropamide, in those days, so there was a
restricted choice of drug. Certainly the
idea of cholesterol and blood pressure was almost never addressed in most of
these clinics. The main ethos was diet,
weight and looking after your feet.
How much do you
think the patients benefitted from these mini-clinics?
My personal view
of what the patients thought is that they liked them, because they knew the
people involved, so every time they came to clinic, they knew who they‘d be
seeing. Lots of them had a personal
relationship with their GPs, and they knew their practice nurse. Most of them felt they were getting better
care, plus they were seen more regularly, so those who needed more support were
able to get it; they didn‘t just get a routine six or nine month appointment,
as they had been doing at the hospital. So, whether the standard of care was as good as it might have been at
the hospital, I really can‘t say, but most patients preferred to go to their
local GP for their care.
|
| | (8) And what did you do after being a community
dietitian?
In 1983, I had
my first child, so, in those days, you stopped work when you had children; it
wasn‘t really open for discussion. Some
people carried on working, but most people didn‘t, after they‘d had a child. So, I gave up work, and coincidentally, at the
same time, we moved down to
Kent
,
because my husband changed his job. So,
I then had two children, and it wasn‘t until we moved to
Bath, in 1986, that I considered going back
to work. By then, my oldest child was at
school, and my youngest child was in nursery school. And I went to a coffee morning, and found
myself discussing which were the best nappies to use, so I thought it was about
time I went back to work.
And what did you
do?
We were living
in
Bath, so I
wrote to the dietetic department at the local hospital, and said did they have
a vacancy, and, coincidentally, they did, so I was lucky enough to be given
part-time work. They were very
accommodating; I worked school hours only, so it actually suited me really
well. It was a district general hospital,
so, unlike Addenbrooke‘s, there were no specialities. There were a lot of outpatients, and I was
mainly, again, dealing with diabetes, lipid disorders and obesity - those were
my specialities - and the majority of work I did was in outpatients.
And in 1986,
were there a very large number of people coming with diabetes?
They had a
diabetic clinic every week at the hospital, and I think I had patients booked
every ten minutes for four hours, once a week, every morning, so I‘m guessing
that‘s a reflection there were quite a lot of people with diabetes. The majority were Type 2, who needed weight
reduction, but I still saw a percentage of Type 1s in outpatients. There was also an inpatient component to the
job, at the hospital in
Bath,
and the consultant there - a Dr John Reckless - was very innovative. And he actually had a ward that was
designated for people with diabetes, so if they were admitted to hospital and
they had diabetes, they were put onto that ward. I think, as a result, they probably got
better care. Certainly people with Type
1 diabetes got their insulin when they needed it, rather than when the next
drug round was, and there was more attention paid to the kind of food they
could eat. And if they ever had a hypo,
there was always something available to treat it.
When you say
they got their insulin when they wanted it, was it determined by their wants?
In
Bath, I think it was very
much to do with individuals and when they needed insulin. In many hospitals, still, insulin is given
when the drug round takes place, regardless of when people are eating, and
regardless of their usual insulin regimens. I think, on that ward, they took great care to make sure that didn‘t
happen, so if people were taking soluble insulin with their meals, it was
guaranteed they could get it at meal-times.
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| | (9) Can we just do a little summary, then, of
what dietitians were doing in 1986, because it‘s now sort of ten years since
you first encountered diabetes?
By 1986, most
dietitians, but not all, were no longer dealing in exchanges or grams of
carbohydrate. The basic tenet was that
of healthy eating: a high fibre, high starchy carbohydrate, low fat diet, with
plenty of fruit and vegetables. More or
less healthy eating, but with more emphasis on fibre. There was still, however, a great deal to be
said about sugar. People were still
convinced that sugar, in all forms, was bad for people with diabetes, and under
no circumstances should they be eating it. It made life very difficult, and in fact, I think in 1984, the British
Diabetic Association produced a book called Carbohydrate Countdown, which gave
people with diabetes an idea of how much carbohydrate was in the food they were
eating. They divided the foods into red,
amber and green. Green foods were healthy,
so you could eat plenty of them; amber not quite so healthy; and red should be
avoided, or only used as special treats. But still, the colour coding depended on the sugar content of the food,
so, for example, in the green section we have salami, which is very high in fat,
but actually contains very little carbohydrate, so people with diabetes thought
they could eat as much salami as they liked. In the red section, it is almost, without exception, foods that are high
in sugar or contain a lot of sugar. But
interestingly enough, if we look back on it today, if we look at the green
section, we‘ve got muesli, which is high in fibre. An ounce gave the same amount of calories and
total carbohydrate as an ounce of Coco Pops, for example, and yet muesli was in
the green section and Coco Pops in the red section. So, the sugar content of foods really
dictated how people thought about it, and, of course, what we know now is total
carbohydrate matters more than whether it‘s starch or sugar. So, although I think most people would stand
by the tenets of healthy eating, in terms of blood glucose control, it‘s total
carbohydrate that matters, whether it‘s sugar or starch.
And what were
you mainly doing, while you were in
Bath,
from 1986 to 1991?
By far the majority
of my work was diabetes and obesity, and, by definition, a lot of the people I
saw with obesity, also had Type 2 diabetes. I felt there was a lack of provision for most patients. The diet sheets we used were still the old
style prescriptive diet sheets, where the dietitian would write out what the
person was supposed to eat at every meal, and often gave it in terms of
exchanges. So, I completely re-wrote the
diet sheets, with the emphasis on the foods that would raise blood glucose
level, but also some understanding of the fat content of foods, because that
has an effect on heart disease. But even
then, I tried to separate out the difference between healthy eating and foods
which raised blood glucose levels. I
felt, at the time, and I still feel today, that telling people with diabetes
that they can eat as much starchy carbohydrate as they like, without informing
them of the effects it‘s going to have on their blood glucose levels, is not
productive.
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| | (10) It‘s obvious, from what you say, that there‘s
been a complete change in approach, from 1975, when you went on your placement
at Addenbrooke‘s, to your time at
Bath. Where was it that these changes were coming
from? Where were you getting your information
from?
I think, in
retrospect, that‘s a difficult question to answer, but I think a variety of
sources, and one of the biggest, I think, was personal clinical
experience. Initially, in the seventies,
we were really restricting carbohydrate. People still didn‘t seem to have the kind of blood glucose levels they
wanted. Then we started suggesting they
had a lot of starchy carbohydrate. People
still weren‘t getting the blood glucose levels they wanted. So, it seemed as if there was something else
going on here, that just changing the diet probably wasn‘t having a fundamental
effect that we thought should be happening. And it seemed to me, if we made that fundamental change from really
restricting carbohydrate to suggesting people ate quite a lot of carbohydrate,
that perhaps there could be another change too that might have similar effects,
or not; who knows. But I think it was
the fact that my patients weren‘t getting what they wanted from all these
changes that we all found so frustrating. There were also quite a few dietitians, at the time, who I used to meet
at the old Diabetic Association meetings, which were then held twice a year,
and we would have discussions. And, in
fact, a great friend of mine published an article entitled "who eats egg-sized
potatoes anyway?" I‘m not sure she
was allowed to call it that, in the end. It was something like, you know "what is a ten gram exchange?",
or whatever. But there was a feeling
amongst a lot of dietitians, who were spending time with people with diabetes,
that something wasn‘t right, but we weren‘t quite sure what it was.
How did the
patients respond to your new diet sheets?
For a lot of
patients, it was extremely challenging, because it seemed to be the exact
opposite of what they‘d been told last year, and it‘s something that I think dietitians
are often criticised for, quite rightly, is that we‘re always changing our
mind. Of course, as new evidence comes
to light, I don‘t think it would be right to withhold it from patients, but I
think it‘s probably the certainty with which dietitians say a lot of things
that gets them into trouble! And so, the
patients reacted… I think newly diagnosed, who hadn‘t had advice previously,
were quite accepting of it, but those who‘d previously restricted carbohydrate
did find it quite difficult to be told "oh, now you can eat almost as much
as you want". And, in fact, often
they wanted to know how much they could eat. So, quite often people were using systems of household measures, so they
would talk about things like slices of bread, or tablespoons of cereal, or
tablespoons of rice or potatoes. So,
some attempt was made to assess portion size by using household measures. So, for example, people still wanted to know,
you know, what exactly can I eat? So,
typically you‘d start with breakfast, and say you can have two slices of toast,
or you can have five tablespoons of cereal, or you can have one banana and one
diet yoghurt. And then, for lunch, they
could have two slices of bread, or two spoonfuls of potatoes. So, they were given choices. It was a bit like the exchange system, but
without mentioning exchanges or carbohydrate. And it was an attempt to try and keep carbohydrate intake at moderate
levels throughout the day, so they didn‘t have large amounts at one time; obviously
that would have a huge effect on blood glucose levels.
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| | (11) And what did you do after you left
Bath?
In 1991, again,
my husband changed his job, so we moved to Wantage, near
Oxford, and we bought a very old house that needed
a lot doing to it. So, I decided I
wouldn‘t work, and within six months I was back at work! I think the choice of doing up the house and
going to work was an easy choice to make. And again, I wrote to the local dietetic department, and said, you know,
I was here in the district, were there any jobs available, and I was invited to
a dietitians‘ meeting. Now, in
Bath, there were six
dietitians for the whole area. I went to
my first meeting in
Oxford
to find forty two dietitians in the room. It was a bit of a culture shock, I had to say. I was still very interested in diabetes,
something that I felt that I was well versed in, and coincidentally, at the
time I was writing, a research job came up working with Robert Turner and Rury
Holman in the Diabetes Research Laboratories. And I went to the interview, and I was very lucky to be offered the job.
Where was that
based?
In those days,
the Diabetes Research Labs were based at the Radcliffe Infirmary, the old
hospital in the middle of
Oxford,
which has since closed, and is sadly missed by all, even though it was falling
to bits. And it was a really lovely
place to work. And what I most enjoyed
about the job was I was doing research, but with a clinical basis, so I was
seeing people, seeing patients, giving them advice, but combining that with a
research study too.
So, tell me
about the research.
So, the first
study I worked on was called the Fasting Hyperglycaemia Study. That was identifying people who didn‘t yet
have diabetes, but who had higher than normal blood glucose levels. And we were looking at interventions to see
if we could stop them developing diabetes. And my job was to give them diet and exercise advice, to try and reduce
blood glucose levels, and prevent them getting diabetes. Part of this, of course, was weight loss; the
majority of them were overweight. So, I
was the lifestyle advisor; that was my job, and it was a really interesting
job. The diet we were using, again, was
the healthy eating approach: low fat, high fibre, fruit and veg, but with an
emphasis on portion control, because we were looking at weight loss, and we
were also encouraging physical activity. For most people who were sedentary, this just meant walking more, but we
did aim to get them to exercise for at least three times a week, for forty five
minutes at a time. And they had to
exercise so they felt their heart beating harder than normal, they were breathing
slightly heavier, or they were sweating slightly, so they felt they‘d done some
activity. And we saw people at monthly
intervals, and the study actually lasted six years. And what was really interesting for me was,
everybody who saw me lost weight in the first three months, but by the end of
the study, everybody was back where they‘d started. And I found that so interesting, and it made
me think about not the advice we give people - i.e. what we say - but how we
say it. Was there another way of
delivering information that would make people make changes in their life that
they could maintain?
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| | (12) How much advice had you given on physical
activity before you‘d started this research?
The main advice
I‘d given to people, in the past, had been about dietary change. I think I may have said in
Bath, on occasion, "oh, and it might be
a good idea to do a bit more exercise", but that was about as far as it
went. But there was growing evidence,
now, that physical activity really made a difference, in terms of preventing
diabetes, and so we did pay a great deal of attention to that. It was something I was actually quite
interested in, and I have to say, as a result of doing the study, I increased
my own physical activity. So, it might
not have worked for the people I saw, but it certainly worked for me. And I think it was something, again, that
just reinforced what I felt about dietary change: that everybody has the
knowledge. If you ask most people what
they need to do to increase their physical activity, they‘ll tell you. What they can‘t tell you is what needs to
change in their life in order for them to be able to make these changes.
And that,
perhaps, links up with what you were saying about the way you tell people about
things, rather than just the content of what you say.
Yes, about that
time, a colleague of mine, Liz Eeley, was working on the United Kingdom Prospective
Diabetes Study, or UKPDS, which, of course, Robert Turner and Rury Holman
devised, and ran very successfully. And
we both felt the same thing: we both saw that initially people were capable of
great change, especially when they‘d just been diagnosed with diabetes, but
maintaining that change was really impossible, and that quite often, if we went
on at them, as we sometimes did, all we seemed to do was create
resistance. And this led to my interest
in behavioural approaches to changing lifestyle, and not just looking at what
people were doing wrong, which is what you‘re taught to do as a dietitian. You take a diet history, you find out what
they‘re doing wrong, and you tell them how to put it right. But you don‘t need to do that. Actually, most people have the necessary
information. Most people, nowadays, know
what they have to do; the difficulty they have is doing it. So, I‘d changed my consultation style quite
dramatically, during this time. Went on
a lot of courses - Charles Fox runs an excellent one in Northampton, which
looks at exactly this - and it‘s about supporting behaviour change in people,
and not telling them what to do.
How do you
support behavioural change?
The idea is to
look at how confident people feel about the changes they can make, look at the
barriers, discuss what past experience they‘ve had, so it‘s an exploration of
feelings. I think what‘s largely
overlooked in a lot of the advice we give people is, how people feel is what
drives their behaviour, and if you can explore how they feel, and look at
what‘s stopping them making changes, that often helps them make the change.
Can you give
some examples?
Well, I‘ve
started running weight management groups, now, for people on insulin. They do find it very difficult to lose
weight. I run it with a clinical
colleague, Angela Hargreaves, and we spend the first week exploring barriers to
change. So, for example, some people
will say they can‘t exercise because they‘re too busy - you know, they work
full-time, they get home, they have a family to look after, there‘s no space
for them to exercise. So, we have a full
discussion about that, and often you can find out that they can always make
space for stuff they want to do, for example, a lot of people have no
difficulty in finding half an hour a day to watch a soap opera. That‘s not an issue for them; they want to do
it, so they arrange their lives so they can do it. We go through the process to find out what it
is they do to make sure they have half an hour to do what they want to do, to
see if they can use those same techniques to, for example, take exercise. They don‘t necessarily have to go and join a
gym or go swimming or run a marathon; for some people, just walking a bit can make
a difference. But it‘s trying to put
people in the place where they‘re identifying what their barriers are, and
they‘re also providing the solution.
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| | (13) Can you give some examples of people who
manage to change their lifestyle?
Yes, I certainly
can. I‘m thinking of one lady in particular,
who, although she didn‘t have a binge eating disorder, was quite frank about
the fact that during the evening, she ate too much. Her background was: she was a busy mother,
and her husband was very demanding, she did a lot of paperwork for him at home,
did his accounts. And in the evening,
when she sat down, once the children were in bed, that was her time, but that
was also the time she just used to sit and eat. Now, she used to watch television, she liked ITV, and she wouldn‘t miss
her programme, but every time a break came on, she was into the kitchen, opening
the cupboards, finding what she could eat in the fridge. And what we used with her is a technique
called problem solving, where she identified what the problem was - she knew
what it was - that every time a break came on the television in the evening,
she would go and get something to eat. She wasn‘t hungry, she didn‘t need it, but she felt she was treating
herself. So, we made a long list of what
she could do to stop this, and we just went straight through the list without
evaluation. So, we came up with ideas
like, for example, lock the kitchen door, put a lock on the fridge, don‘t buy
any food, stop watching television, change to BBC. There were a long list of things we could do,
and once she‘d made that list, we went through it one by one, deciding what
would suit her. And, in fact, half way
through, she said "oh, I could take up knitting", and by the time
we‘d worked through the list, she decided if she took up knitting, then that
would work very well for her, and that‘s what she did. Now, I‘m not saying knitting helps you lose
weight. I‘m saying for her, this was a
solution that worked. I‘ve got two nice
jumpers to prove it works, and she managed to lose a significant amount of weight. But it was because she identified a solution
to her particular challenge.
Any other
examples?
In our weight management
group, we also have people with Type 1 diabetes. And I‘m thinking specifically of a man, now,
who used to snack a lot, so every morning and every afternoon, he had a
snack. Now, when he was first diagnosed,
thirty years ago, he was encouraged to snack, but with the new kinds of insulin,
people don‘t need to snack, and often can manage on just three meals a
day. And he just snacked out of habit,
and, of course, he enjoyed it; it was a time when he felt he could sit down and
have a nice cup of coffee, a chocolate biscuit, or a banana, or a packet of
crisps, and he thoroughly enjoyed it. He
had identified that if he stopped the snacking, he would probably lose weight,
so we had a big discussion about how he could do that. And he was still convinced that he snacked
because he needed to, so what he decided to do was just test his blood glucose
before he snacked, and make a decision then. And he was astonished to find that his blood glucose was actually quite
reasonable mid morning and mid afternoon, so this perception he had that he needed
to snack just wasn‘t true. So, he tried
not snacking to see what would happen, and, in fact, found that was very
successful. And on the occasions where
he felt his blood glucose was too low and he needed a snack, he would just have
an apple, and he found, to his astonishment, that worked as well as a chocolate
biscuit or a bag of crisps. So, for him,
it was more an idea of challenging the perception he had of needing a snack. The enjoyment was very interesting, because
he‘d said, initially, he had the snack because he enjoyed it, but it actually
turned out he was having it because he really felt that he needed it. And he found it very challenging, when he
decided to do this, but also, it made him think about the way he acts towards
his diabetes, and how he‘d turned... At
the end of the month of the course, he did say that he‘d stopped blaming his
diabetes for a lot of the stuff that was going on in his life, and again, he
successfully lost quite a lot of weight.
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| | (14) You became interested in behavioural aspects
of your work in the early 1990s. What
major changes have there been for dietitians since the early 1990s?
Since the early
1990s, I think there‘s been a recognition that dietitians can‘t just dispense
advice about what people should do, that they should address motivation and
behavioural approaches to changing lifestyle. And I think most dietitians accept that when they‘re working in chronic
disease, the traditional medical model doesn‘t apply. And most dietitians, I think, now take this
on board. This is also true of a lot of nurses
too, of course; it‘s not just dietitians. And there‘s a recognition that diabetes is largely managed by the person
with diabetes, and what those people need is help and support and
motivation. They don‘t need to be told
off, or told what to do by the health professionals that they see. So, I think it‘s a shift, not in the kind of
advice we give, but in how we deliver it. And certainly, during the late nineties, when I was working as a
specialist dietitian in a clinical role, I think it‘s true to say I developed
these skills further. I changed my job
again in 19... I‘m sorry, I mean 2004. In
2004, I changed my job to become a research dietitian, which gave me a bit more
space to look at the stuff I was really interested in. And, of course, in 2003, what used to be the
British Diabetic Association, is now Diabetes
UK
, had published updated
nutritional recommendations for the new millennium. And I think most dietitians were really
pleased to see the emphasis is now on treating the individual, respecting their
culture, the choices they make, their preferences. And this individual approach, I think, has
been a great benefit for people with diabetes. There was also, at the same time, a growing awareness of people with Type
1: that strict prescriptive diets were ineffective; that there was no reason
people with Type 1 diabetes can‘t eat exactly the same things as people without
Type 1 diabetes, if they were able to match their insulin to the carbohydrate
they ate. And, of course, a lot of
centres now run courses teaching carbohydrate counting and insulin adjustment;
the best known, of course, is DAFNE, but many centres run their own
courses. We run one in
Oxford
called InSight, and we were very lucky to get funding from Diabetes
UK
to run this as
a research project. And I consider
myself really fortunate for being able to deliver it clinically, but also
evaluate it in my research post. And
we‘ve just recently presented the results at Diabetes
UK
, in 2008, which show that it‘s
an effective programme that improves quality of life. And it‘s nice, now, to have the evidence that
shows that what we‘re doing is effective.
How possible is
it to get everyone with Type 1 diabetes to go on such a course?
I think it‘s
important to remember that people with diabetes should have choices. I don‘t think the structured education
courses are suitable for everybody, and certainly if people aren‘t numerate or
literate, it can be very challenging to complete these courses. There are also some people who just aren‘t
interested; they‘re quite happy eating similar foods everyday, and taking
similar amounts of insulin. To suggest
these people would benefit from a course, I think, is not right. Our attitude, in
Oxford, is that these education courses
should be offered to everybody, and that‘s what we do; it‘s now part of our Care
Pathway. So, a year or so after
diagnosis, people with Type 1 diabetes are offered this course, but it‘s up to
them whether they choose to attend or not.
Their Care Pathway
sounds like a bit of jargon. When did
that phrase come in?
Care Pathways, I
think, have been around for a few years, now, and they‘re very simple little algorithms
that say: at diagnosis, the patient with Type 1 should receive, for example, an
insulin pen, some insulin, advice on how to inject insulin, advice on how to
measure their blood glucose, and simple dietary advice. They should then be seen at certain visits,
and at each visit the following topics should be covered. And by the end of the first year, they should
be offered the chance for an education course. So, yes, Care Pathways is a bit of jargon for us making sure that we
cover all the things that need to be covered, for people with diabetes.
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| | (15) And what advice is being given to Type 2
patients?
I think we‘ve
moved away from this idea that Type 2 is mild diabetes, and certainly, the
publication of UKPDS, in 1998, showed us that it‘s not a mild disease. For example, 50% of people with Type 2
diabetes already had some kind of tissue damage associated with diabetes, at
diagnosis. We know diabetes is the
leading cause of blindness in the
UK
, in people under the age of
sixty. So, we know it‘s not a mild
disease any more; we know that it really matters. And people with Type 2 should receive
treatment and structured education, similar to that given to Type 1. And, in fact, in 2005, Diabetes UK and the Department
of Health produced an edict saying that all people with diabetes, whether it‘s
Type 1 or Type 2, should receive structured education. As a result of this, a randomised control
trial called DESMOND - and can I remember what that acronym stands for, no I
can‘t - is offering structured education to people with Type 2 diabetes. And here in
Oxford, we don‘t run DESMOND, but we do run
our own programme called Diabetes Together. So, all people diagnosed with Type 2 diabetes are offered the chance to
attend this structured education course. Again, they‘re given the chance to attend, they‘re not... it‘s not
mandatory, so it‘s their choice whether they attend or not. But I think the take-up of this course is
actually quite encouraging; it is well attended, in
Oxford.
How has your
work been affected by changes in the Health Service?
The big change
in the Health Service, I think, came with the QOFs - the Quality Outcome Framework
- where GPs were paid by results, and they were encouraged to take on care of
people with diabetes, and are paid well to do it - there are a lot of QOF
points for people with diabetes. So, for
the majority of people with Type 2, most of their care now takes place in primary
care. And the knock-on effect we‘ve had
at the hospital, of course, is that we now see very few people with Type 2
diabetes; certainly no newly diagnosed. We‘d see Type 2s who may need to go onto insulin, who need specialist
help to lose weight, or who already have some kind of tissue damage associated
with diabetes. But the majority of
people with Type 2 diabetes are now seen by their own GP in primary care, and,
of course, sometimes they get excellent care, and sometimes they could get
better care at a hospital. It really
depends on the individual GP.
And what have
been the major changes, in your experience, as a dietitian?
The biggest
change I can think of, over the past twenty years especially, is this move away
from an isolated dietitian, sitting in an office, somewhere, seeing someone
with diabetes completely independently, to working as part of a multidisciplinary team. And that‘s made a huge difference, mainly
because patients are getting a similar message from all members of the
team. It must be terribly confusing for
people with diabetes to get different messages from different healthcare
professionals. But also, it means a
broadening of knowledge for everybody concerned. So, for example, I couldn‘t run InSight unless
I knew about insulin adjustment, and the nurses I run InSight with have to know
about carbohydrate counting. And I
really think this getting the full picture has made a big difference to the way
we practise.
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