| Here you can read through
the whole transcript for this interview. Click on the listen icon to hear any of the tracks.
You can search on this transcript by clicking
for the research tool. Alternatively you can
download the full transcript [here]
Diabetes Research NurseBorn in Oxford in 1962.
Overview: Jenny Shaw began specialising in diabetes when she worked as a staff nurse at the Radcliffe Hospital in Oxford from 1986 to 1988. She has worked in Oxford ever since, first as a diabetes specialist nurse from 1988 to 1998, then as a research nurse for the past ten years. In recent years, she has been involved in studies concerning the development of new treatments for people with type 2 diabetes. She is interested in the diversity of patients` experiences: `it`s a challenge how to meet that with each patient, and adapt…to that individual, and listen to what they`re saying`.
|[View Full Interview]|
(1) Tell me about your background.
I was born in Oxford in 1962, and I attended a private school in Abingdon, until the point of my A Levels,
and then I went off to college, in Oxford, to complete my A Levels. I come
from a background that has not a heavy medical input at all, so the fact that
I‘ve always wanted to be a nurse is a bit of a mystery to me. I don‘t know
where I got that idea from, but I always had this image of me floating down
corridors and wards in this lovely hat and uniform. And that‘s what I wanted
to do. So, I just got the absolute bare necessities of qualifications that I
needed to do that. And this was in the days prior to getting a degree in
nursing was common knowledge, which is a shame, because that‘s what I would
have done, if I‘d known. I think they were only just coming into fruition
about then. So, my parents: my father is a press photographer, and my mother
had multiple jobs - running pubs, being a sales rep for a printing company,
running her own shop, her clothes shop - numerous jobs, so I couldn‘t actually
label her as one particular profession. But they split when I was young, and I
lived, for many years, with my grandmother, who was that sort of stable figure,
and made sure I attended school and was sort of properly looked after, while my
parents were up to other things. And then, at about the age of eighteen, I
applied to get into nursing, and was accepted at Wexham Park Hospital in Slough, which is the East Berkshire School of Nursing, as it was.
And what are
your memories of your training?
think it was a very pleasant training. It wasn‘t, I don‘t think, highly
rigorous, probably compared to today‘s training. It was definitely in the
orientation of a school, rather than a college. And I think you were fairly
well-treated as school children, and I think that was probably the last days of
that kind of attitude towards the students. And you were coddled the way
through, really. However, you were placed on the wards: not as supernumerary,
as they might be done today - you were definitely part of the numbers, and
actually given responsibilities that were beyond your ken at the time, which
was not safe practice. And you were left in charge of quite a few sick
patients, and you weren‘t capable, just because you had a third-year stripe on
your hat. So, I could see the change coming, and there were a lot of older
tutors there who needed to move on to make way for new, fresh blood.
(2) And what are your memories of the course?
My memories of
the actual course were it was very segmented into different specialities in
healthcare. Specific to diabetes: it was a very small part, very tiny part, and
it was portrayed as something very complex and difficult to understand. So, as
a young student of eighteen, nineteen, you didn‘t want to know; "I don‘t
understand that. I won‘t be dealing with that, thank you very much". And
so, the patients, who were on the ward, probably got a very poor deal out of
us. And I think that I can even safely say that about the staff nurses - the
qualified staff - on the ward, as well.
What kinds of
patients with diabetes did you encounter, during your training?
They were always
very sick patients, who were in, or they were what was called ‘brittle diabetic’
- that terrible phrase - to come in for control issues. And the equipment we
had to measure blood glucoses were absolutely antiquated. And I think the
understanding behind these people‘s problems were totally naďve.
What was meant
by brittle diabetes?
The word brittle
diabetes was to someone who had difficult diabetes; it wasn‘t easy to control.
Everything had been tried, and there was just no solution to it, and they were
living lives of poor quality, because of their diabetes: hypoglycaemia, hyperglycaemia,
ketoacidosis, couldn‘t hold down a job. They were usually young. So, this was
termed brittle diabetes.
And were you
encountering Type 1 and Type 2 diabetes?
No, I remember,
really, mostly Type 1s coming into hospital with this problem. If it was Type
2, they were just coming in for surgery, or, you know, they were in a psychogeriatric
unit, or something. It was an add-on, really, rather than their main cause of
And how were the
I think they
were treated like automatons. I don‘t think, at that stage - we‘re talking
late seventies, early eighties - as people who had issues, that they needed to
be related to, to understand where these people have come from, what was really
going on. It was very automated. It was: you do the blood sugars, you write
them down, you record what food they‘ve eaten, you give the insulin. A doctor
would come in, and say something prescriptive about what the insulin dose was
going to be, and that‘s all I can remember. Now, it may not be that that was
what was going on, but that was my perception, at the time. I didn‘t feel
there was much psychological care put into these patients.
(3) Strangely, they always seemed to be tied to their beds. So, they
weren‘t wandering about with normal activities that they would do through a day,
they were sort of in pyjamas, in their beds.
And can you
describe the blood testing?
testing, back then, was a very old meter that you... well, it was only a meter
when I worked in intensive care. On the wards, it was probably mostly urine
testing - watching the colours changes - or I think there was just the
evolution of the BM stick. And on the ward, you would use a whole strip, just
to read off the colour, which could be interpreted quite differently from one
person to the other, and so the variation of the reading could be large. Or,
if patients were using them at home - some patients were starting to - you cut
the strip in half to keep the costs down. These early strips - the BM strips -
had sort of landmarks of colours, and there was actually, between one colour
and another, could be quite a large gap of millimoles, which made it open to
great error and interpretation problems, really.
And can you talk
about your memories of insulin, at the time?
I probably was
around at the time that they were swapping from the various strengths of
insulin to the U100. And, being a student nurse, I wasn‘t terribly involved in
that swap-over, which would have been done in an outpatient basis, and would
have been a huge amount of time by staff to do that. Mine was learning, as a
student, to draw up different amounts of insulin, according to the different
strengths they‘d been prescribed, and learning the maths to do that, and to
not, you know, to be safe, and to not make errors. So, I was very relieved
when I hit Geoffrey Harris ward, at the Radcliffe Infirmary, which was the
diabetes unit, not to have to do that any more. It was all U100, with the same
Did you observe
any errors being made, during your training?
No, I didn‘t,
actually; no, I didn‘t notice any errors.
(4) And how much education was there?
patients was barely existent. I was never taught very much about what to tell
the patient: what should the patient know to be able to go home and live a
relatively ‘trouble-free life‘, as it were, in inverted commas. It was all
done for the patient, and there was nobody out there who was a specialist who
could enhance your knowledge at all. And the education that I got, in the
classroom: I think we had one dietitian to turn up to talk about carbohydrates,
and carbohydrate counting, I think, as it was called back then. And it wasn‘t
very clear to us students; we were none the wiser when she left. And I think
that was probably it. And I think we probably had another half an hour session
on Type 1 diabetes, Type 2 diabetes, from a tutor, and that was it.
And then you
were let out into the big wide world. What did you do next?
I stayed... my
last placement was in theatres, general theatres, and I stayed on for a while
there, as a staff nurse. And then I left that. And so, diabetes wasn‘t a big
issue in theatres; not at all, really. And then in ITU, I met people who had
diabetes in ITU, and I met my first meter that you put the BM Stick into, which
I think was called a Refulux. And it was a big orange brick of a thing, and
you had to put the strip in, twiddle the knob until the arrows met up on a
dial, and then it would read off how many millimoles your blood test was.
can you spell out what ITU stands for?
Well, it‘s an Intensive
Therapy Unit, or Intensive Care Unit.
(5) And what did you do after your time in ITU?
Well, as a total
reaction to looking after very sick uncommunicative patients, I had a real
yearning to actually deal with people and their issues. And I wanted to come
back home to Oxford. Looked around at a few jobs - I was living near the
Radcliffe Infirmary - and found that there was a staff nurse post in the
diabetes and endocrinology unit, a ward called Geoffrey Harris ward. And I
knew I didn‘t know much about diabetes, but I thought it was about time I
learnt. And I met a lovely nursing sister there, who… well, mentored me, and
she taught me all I knew, very quickly. And I really loved it. I loved that
link between nurse and patient; I liked the way nurses had a bigger role to
play, and that it wasn‘t always medic-led; and that you could see it was a
growing speciality. It was something that you could work on, improve the
service, and you could see it had a future.
You were a staff
nurse in diabetes and endocrinology, at the Radcliffe, from 1986 to 1988. Were
there any changes in diabetes care, during that period?
I think this must
have been a sort of pinnacle of change, over those years, because I think -
unless it was just perceived that in Oxford - but the patient had... was the
centre of the care, and that the medical staff were not. And that we were
still having to admit all patients, either to start an insulin pen, or if they
had control issues, or anything like that, they had to be admitted, because
there were no diabetes specialist nurses that could facilitate that out in the
community. So, that gave me the opportunity to learn a lot quite fast, with
the support of Maggie Watkinson, who was the sister of the unit. And we
realised that we could develop small education programmes, whilst they were in,
that would help to keep them well and healthy outside the ward, and not to keep
coming back into the unit. And then the ward started to have lots of phone
calls from patients. So, not only were we trying to run a unit with other
endocrine problems, and some neurology and diabetes, but because there was
nowhere else for patients to go, they would be phoning in all the time to ask
for help and advice. And we realised we were admitting people that didn‘t
really need to be admitted, but there was nowhere else for them to go. And
that‘s when the idea of getting one of the first diabetes specialist nurse‘s
posts going came to fruition.
Before we move
on to your becoming a Diabetes Specialist Nurse, can you say what the educational
packages contained, on the ward?
It was really…
it was nothing fancy. It was just a basic checklist of what we thought
patients should know, like: legalities of driving, what to do when sick, how to
dispose of needles and other sharps, do you belong to what was the BDA - the
British Diabetic Association, do you know about hypoglycaemia. So, it was a
long list, and it was a bit of a tick-box checklist, but it was a start.
(6) And now talk about becoming a DSN.
I became a DSN
in 1988, after the hospital approached one of the pharmaceutical companies to
sponsor that post for two years, and this was done from Eli Lilly. We had a
really good relationship with pharmaceutical companies, who supported us both
for our own education, and for patient education material, and just general
information. So, this relationship worked both ways, for them and us, and they
weren‘t just merely sales reps coming in any more, they were quite an integral
part of the team.
What was in it
was in it for them, obviously, at the end of the day. But you could... I mean,
you went past that. These were people, and you did build up good relationships
with them. But, at the back of your mind, you always knew it was about insulin
sales and competition.
happened? How did you become a DSN?
I became a
DSN... I was a senior staff nurse, at that point, and I applied, and nobody
else did. And the senior nurse on the ward, Maggie Watkinson, had just got a
post as a lecturer practitioner, attached to Brookes University, because nurse
education was a really important issue, at this point, and it had gone to
degree level, and they wanted representation from the area of diabetes. And so,
she took that shortly after I‘d got the DSN post. So, that was totally new to me,
and I didn‘t really know what I was letting myself in for.
So, what were
you letting yourself in for?
Well, I was
young - I was only about twenty three, twenty four - and I, you know, full of
enthusiasm, thought I could change the world. And I was given a little office
in the corner of the ward - it was a cupboard, actually - so I was still in a ward
environment. And I spent a week or two visiting other community nurses who had
a DSN input, so they were other early-day DSNs; there weren‘t many. And I was
really intimidated by the fact that everybody kept saying to me "but
you‘re not community trained. You‘re not a district nurse. You can‘t do
it", you know, "You haven‘t got the right background", which I
never quite understood, but felt that they were older and wiser, and must have
known better. But that view changed really quickly, to that wasn‘t the most
important thing that you needed at all, and that you could come from many
backgrounds and gain the knowledge to be part of a diabetes team. And what
really occurred to me, and the light bulb came on in my head, that I was part
of a large team of people, caring for an individual with diabetes. It wasn‘t
just me and the patient; actually, there was a large team. So, there was the
evolution into the team approach, which, through the eighties, was a huge model
that people followed.
(7) And what did you do? Describe a typical week.
Well, in the
early days, I don‘t think people really knew what I did. So, I was stretching
myself by going out to the community, speaking to GPs, doing talks at lunchtime,
in the practices, about insulin, or any basic things on diabetes. GPs were
really keen to set up something called diabetes - or diabetic - mini-clinics,
and so I‘d help practice nurses set those up. I would see patients in my
office, who normally would have come in to occupy a bed, to convert to an
insulin pen; I would be doing that. Or people who had control problems with
their glucoses, I could be doing that. And then, I became a victim of my own
success, and the wards at the John Radcliffe got to know about me. So, I was
always getting phone calls from the John Radcliffe, or other parts of the
Trust, to go and sort out patients who had been admitted, and give advice. So,
it got really busy, very quickly.
Can you describe
these mini-clinics in the GPs‘ surgeries?
Well, I think
the idea was that people with relatively early onset diabetes didn‘t need the
specialist role to look after them, so not everybody should have to come into
the hospital. And, perhaps, I think, naďvely I thought "well, if they‘re
better cared for out there, they won‘t end up coming into hospital, because
they won‘t be so sick, so let‘s care for them all in their own general practice".
So, there was something called a little co-op card, where perhaps it would be
better if there was shared care going on. So, they were seen in their own
surgery, but perhaps six months later, they might be seen in the hospital, and
then all the information about that patient and their last visit would be
written on the co-op card, and then it would be passed over to the hospital
doctor, who could see what happened on the last visit. But obviously, you
know, these kind of shared documentations always fall at the first hurdle, as
the patients lost it, or it wasn‘t filled in. So, they were in vogue for a
couple of years, and then, I think, probably shelved.
You said you
realised you were a member of a large team. Who were the members of the team,
both in the community and in the hospital?
Well, the team
was definitely the consultant, the junior doctors, the podiatrist, the
dietitians, the practice nurses, the district nurses, I related to a lot for
discharge of patients, and the GP.
Were there any
dietitians or podiatrists going out into the GPs‘ surgeries?
they would do community clinics, so yeah, I would relate to them as well,
definitely. I also encouraged, during my visits to the GP, the idea of audit,
within their practice, because it occurred to me that most GPs did not know how
many people they had with diabetes in their surgeries. They didn‘t know how
many people had Type 1 diabetes, or Type 2. And what they‘d usually tell me is,
they only knew by the repeat prescriptions being collected. So, that was a big
issue. And some practice nurses were quite enthusiastic to find out who was
out there, and once they‘d found out the numbers, to document simple things like:
had they had their blood pressure done in the last year, were they smokers, et
cetera, et cetera. These basic things were commonly missed.
(8) You were a diabetes specialist nurse from 1988 to 1998. What
other developments took place, during those years?
years, I still continued to try and promote the care of people with diabetes in
the community. So, I started up something called the primary care diabetes
course, which I wanted practice nurses to attend, to get a basic understanding
of diabetes, and perhaps a little closer look at what kind of audits they could
do in their own practice. That ran, probably, two or three times a year. And
I would encourage GPs and other doctors to come and talk on it, as well. It
also became totally evident that I couldn‘t cope on my own any more, as one
individual. So, one, two… I think two other nurses came to join me, and one
being the sister of the unit, Maggie Watkinson. She became a diabetes
specialist nurse, and kept her lecturer-practitioner role, as well. And we had
another nurse join us as well, so that we grew in number. The work was still phenomenal,
and we tried to divide Oxfordshire into sections, so we would take certain
practices that were ours, and referrals from those practices. And the
referrals within the hospital were also based on the fact of where did that
patient come from, which practice did they come from. And then you would take
them on; they were yours. And it became clear we couldn‘t do both. We
couldn‘t be all things to all men, and try and do well out in community, and
cope with the inpatient work from the hospital, and the outpatient work as
well, and the staff training that we had to do. It got really difficult.
Was this because
of an increase in the number of patients?
It was, yes; I
think that was a big part of it. Over this time, the numbers of people with
diabetes grew hugely.
So, how did you
cope with this impossible workload?
I think we took
on yet another nurse, which didn‘t solve the problem. So, we had to look at
the way we were working, and it was to manage our time more effectively. So,
we decided to cut back on the number of patient visits we would do at home. We
couldn‘t cover all of general practice, like we were doing, as a facilitator role.
So, it really just... we sort of incarcerated ourselves within the unit, and having
all the referrals coming in from the hospital doctors, and those walking
through outpatients, and sometimes attending the wards, if needed, and the GPs
who shouted the most for help, really.
So, did the
quality of care decline, during those ten years?
I can‘t... In
one aspect, I think it improved, in the sense that you had nurses who had a
specialism, and were keeping the diabetes profile high. And we were spending a
lot of time teaching student nurses at Brookes University. We were trying to
create link nurses on the wards, who could then cascade that education down to
other nurses. So, in one way, I think it was quite profitable, but because of
the increasing numbers of people with diabetes, that was counteracting our good
work, really. And I did get exhausted; I got absolutely exhausted and burnt
out. And happened to take maternity leave, at the time, and I think, probably,
I went into the research post shortly after I came back from maternity leave,
because I was just burnt out.
(9) Before we move on to your time as a research nurse, can you recall
any other changes during your time as a DSN, 1988 to 1998.
Well, I think
one of the biggest changes was the equipment for testing blood glucose
monitoring. The technology improved, and the meters started to become easier
to use. They weren‘t idiot proof, but they were definitely improving, and each
generation of new meter brought a simpler piece of kit to use and less patient
error. It was definitely, over this time, that the thought of patient
empowerment started to emerge, and it was the patient‘s agenda that was becoming
a priority, and the awareness of psychological support the patients needed. And
that was quite evident to me in a young adult clinic. We had a research
project going, which had a psychologist attached, and how useful that was. And
that was in the early eighties - probably ‘84, ‘85 - that we really needed that
kind of support, and shortly after, the study ended and the psychologist went,
and we felt very bereft by that. And we never ever got the money again for
that kind of support.
What kind of
support did a psychologist give to young adults?
either see them about behavioural problems concerning their diabetes, eating
disorders, or relationship problems that were coming between them and their
diabetes, which was really useful. Or they would give us advice about how we
might manage a situation, rather than just blindly going on with this sort of
patient-staff relationship that‘s probably quite wrong. You were heading off
down the wrong route, and you just needed somebody, who knew what they were
talking about, to put you on the right tack that you might take.
Can you give me
some kind of example of where you might have been going wrong?
I can‘t remember
anything in particular, but what I can remember is, you know, probably a
teenager that was constantly coming back with hyperglycaemia or ketoacidosis,
always ill, always saying "I‘ve taken all my insulin, and I just don‘t
know why this is happening to me". And you know there‘s something going
on, and perhaps the psychologist would be able to talk to this person, and find
out more about what was going in their lives, and probably give us help in
order to understand what was going on too; as to why this was occurring.
And was there
any sense that psychological help would have been a benefit to other older
Oh, I think definitely.
Definitely now, it would definitely be of help, because any chronic illness
comes with a lot of stress, and affects people differently, and not just
psychologically. It‘s probably just… you could label it counselling that‘s
needed: depression, anger, inability to cope. And there‘s always lots of
outside stresses in life that affect the way people manage their diabetes.
(10) And what other changes took place in those ten years as a DSN?
Well, I was also
aware that when we went to any national meetings or conferences, that each year
I went, there were just bigger and bigger numbers of staff, especially nurses.
So, you know, that was a big clue, to me, that the nursing numbers in diabetes care
was increasing quite fast.
What were the
early conferences like?
They were very
small, and because we were all quite new to that area, they were very exciting
and everything was new. And you thought "yes, yes, everybody‘s really
making a big effort here, and we can see it‘s a team effort". And that‘s
what was always highlighted at these conferences, that how we‘re going to move
forward, because it was a team approach between hospital and community, and all
the staff involved. Also, looking at the psychological aspects of people with
diabetes was a hot topic, at the time. And you started to get to know people
from around the country, and build that sort of infrastructure and that
networking, which was really important.
And how do you
think the care you were giving in Oxford compared with care around the country?
enough, because we were at a teaching hospital - a large teaching hospital -
the emphasis was on medical teaching, and all that entails, and research. And
it appeared to me that the general hospitals were looking much more at the
delivery of their service, and how they were going to take it forward. So, I
felt a bit left out of that. I didn‘t feel that was happening for us as fast, whereas,
you know, quite sensibly, people assume, because we‘re in a teaching hospital,
things would be moving really fast and forward thinking, and we would be at the
head of it all. Well, we weren‘t, really. And it was also clear that the
specialism for nurses and diabetes got even more specialised, you know:
specialist midwives, specialist paediatric DSNs, in-service patients‘ nurses.
So, yeah, even diabetes was dividing into specialisms.
And again, just
staying with this period of ‘88 to ‘98, can you talk about changes in delivery
biggest change, in the early eighties, was development of the insulin pen,
which was a big boon. Before the pen, you were teaching patients to draw up
clear and cloudy insulins with syringes, and mixing their insulins correctly,
and not contaminating one bottle to the next, not getting air bubbles in. So,
there were lots of patient error issues over that, and safety. And the pen,
with their insulin cartridges and dial-up system, stopped all of that. And the
whole concept of not having to use a syringe, but something that looked like a
cartridge ink pen, was fantastic, that could be slipped into the top pocket or
in a handbag. So, this really moved on diabetes care quite considerably, on
the practical aspects.
Do you have any
memories of the errors people made before the pens came in?
Well, mainly, as
I said, it was the not drawing up correct amounts, not reading the little
measurements on the side of the syringe correctly, or accidentally squirting
one type of insulin into the other bottle of insulin, or drawing up but leaving
huge bits of air in it, which weren‘t actually dangerous, but it took up unit
space, so they didn‘t get the correct dose either. And people just felt very
uncomfortable about using these syringes, which have sort of got that
affiliation with drug use, and felt uncomfortable, socially, using them as
(11) Now talk about becoming a research nurse.
I got the job as
a diabetes research nurse in 1998. I‘d come back from maternity leave, and
worked a short spell, half-time, as a DSN, and got really exhausted by it. I
was getting that burnt out feeling - with a young family at home as well - with
large, large numbers of patients, and the community responsibility as well. So,
I realised that there was a diabetes research job going - and I still loved
diabetes, and I didn‘t want to leave it - so this was a great opportunity just
to sidestep slightly, and experience what research would be like. And it was
great. It was quite a high learning curve, because research - the process of
research - is something that was completely new to me. Whilst I had the
clinical knowledge, which was a good thing to have as well, I did need to get a
little bit more education about research, which I did. And I embarked on
running some… a couple of long-term studies, one of them being the CARDS study,
which was five years long. And patients had already been recruited on to that,
so I took on the responsibility of collecting all the data off them for their
visits, monitoring their therapy, because this study was looking at lipid-lowering
statin, and the benefits of that for everybody who had Type 2 diabetes. So,
that was the main principle of that study. But I had to look after their
diabetic aspects also, because they were with us for a long time. They didn‘t
attend ordinary outpatients as well as coming to the study; we would do
everything. We‘d treat them holistically, and do everything for them whilst
they were with us. Of course, they were happy to stay for the whole duration
of the study, and we didn‘t have anybody leave.
You say that
they‘d already been recruited. Can you talk about your first experiences of
trying to recruit patients for a study?
is the hardest part of any study; it‘s absolutely the hardest. If you can
recruit, the rest of the study is relatively easy. But convincing patients
that research is a good thing to do, and it‘s something that would be a
positive thing for them to do, is tough. And you always have a set of
inclusion and exclusion criteria, about the type of patient you can recruit in to
the study, and sometimes they‘re quite prohibitive and very difficult to follow,
in order to get your patients in. So, you have to be a bit of a sales person,
and try and sell a study to patients, and that it would be… it could be quite a
good thing for them to do.
What are the
advantages for the patient?
advantages for a patient, in a study, is that we‘ll see you over a long period
of time. You‘ll see the same staff, you won‘t have to reiterate yourself, we
will get to know you, you will get to know us, whereas, in most outpatients,
you probably see a different doctor every time. We‘ll have time for you, to
give you that education that you may have missed out on previously, and that we
can do it over many months, many years. And hopefully you‘ll come out the end,
knowing a lot more about your diabetes than you did before, or feeling more
(12) You‘ve now been a diabetes research nurse for ten years, since
1998. What have been the big changes, during that period?
I think, probably,
the changes in medication has been a big advance. We probably had the, about
eight years ago, I should think - yes, eight years ago - the bringing in of
analogue insulins, which has made a big difference to the way people manage
their diabetes. We had inhaled insulin, which seemed like a magic bullet, but
that came and went, unfortunately. I had only one patient start on that, but
it‘s been withdrawn, now, because it‘s not been recommended by NICE, and it‘s
very expensive to use. And it‘s quite a lot of kerfuffle to inhale these by
the equipment, so, unfortunately, that‘s left us. Insulin pumps have
progressed dramatically since I used to start people on them, in the eighties.
They‘ve become very small, very sophisticated piece of equipment. But they‘re
not as widely used, probably, in the UK, because of the expense of them, and
the expense of the consumables, or the needles that are required to insert
them. The costs can rise quite heavily, over a year. For Type 2 diabetes, not
only have they benefitted from the analogue insulins as well, but something
called GLP-1 or Exenatide has been released, which is another new and novel way
of controlling blood glucose in people with Type 2, and it‘s injectable but
it‘s not insulin. And there‘s something called DPP-4 inhibitor, which is
another method of controlling blood glucose, which is not insulin or tablets, sulfonylurea
tablets. Group education has become increasingly important, rather than all
the just… the scattergun education that we used to do with people on an
individual basis, as and when we could. The type of group education would be:
people starting on insulin - special groups for; people… or women who want to
get pregnant, so pre-pregnancy groups; weight management groups, mainly for
Type 2s, probably, if you‘ve got a weight issue; something for dose adjustment
for eating and insulin adjustment, something called… a course called DAFNE, and
there‘s another course we run here in Oxford called InSight. These are all
really important parts of the service, now.
(13) And can you talk about changes in the Health Service?
Well, over the
last ten years, the Health Service has had to take note of something called the
National Service Framework - the NSF - and these set standards that trusts
should be meeting for the care of people with diabetes. There was a ten year
deadline to have reached a certain standard on different aspects, and whether everybody
has, I‘m not sure, but the group education was definitely part of those
standards; personalised education to the individual. So, I think many trusts
are making headway with that; as far as the rest, I‘m not sure. And there‘s
been a big emphasis of taking all the people with diabetes who are seen in hospital,
and those who aren‘t endowed with complications are seen back in general
practice. Primary care trusts want to… well, there‘ll be some financial
implication for putting all the care back into general practice, and only
referring the more complicated patients. But I think there‘s some resources
issues about why that hasn‘t happened for us, yet, here in Oxford, anyway.
You mean care
hasn‘t moved out of the hospital?
No, they tried
to, but I think the GPs were unable to cope, at that point, and so that that process
had to be halted temporarily. And eventually the care will be focussed more
out in primary care again.
Well, as you
were involved in setting up those mini-clinics, and getting care into GPs‘
surgeries, what are your thoughts about the kind of care that patients get in
hospitals, compared with GPs‘ surgeries?
Well, I think,
in an ideal world, it would be great to have people back in general practice,
but I think, by definition, GPs have a lot on their plate; you know, they‘re
generalists and they have to look after everything. And looking after people
with diabetes can be quite a complex business, and it needs a lot of infrastructure
with it for the communications to be reliable; that, you know, if you‘ve done
their eyes that the right people know; if they need treatment that all the
blood tests go to the right place; that they‘re followed up correctly, you know.
Communications out to the podiatrists and the diabetes specialist nurses need…
there needs to be a smooth communication. And GPs and practice nurses need
quite a lot of education as well. So, it‘s a lot to ask of somebody who‘s
working in a general practice.
(14) Looking back, now, to the early eighties, would you like to
contrast what it was like, then, for somebody with diabetes, and what it‘s like
Looking back at
the early eighties, I think things were a lot tougher, really. For somebody
who was converting from tablets to insulin, there weren‘t any group education
sessions you could join. You may have seen the GP, and hopefully you may have
seen somebody on a ward in a hospital; you may have even needed admission onto
the ward, if there wasn‘t a diabetes specialist around. It would have taken a
lot longer to learn how to do blood testing, because you may not have had
access to your blood testing strips. And you would have to cut them in half,
because they weren‘t on prescription, and then learnt how to wipe them
properly, read the colour off accurately, which was very subjective to who
could tell what colour it was on the tin. You‘d have had to learn to draw up
with a syringe, and all the problems you could ensue doing that. And probably,
once you‘d got used to injecting yourself, you may not have had much more
education beyond that, if it was a busy ward that you were on, and been
discharged home. And you may have felt that there was nobody out there that you
could talk to or get help from. Now, hopefully, today, you could have been
started on your insulin, maybe, by your general practitioner and practice nurse,
who have got good skills in that area. Not all GPs and practice nurses do, but
that may have happened. You may have been assigned to a patient group, where
you could have got some more education over a few sessions. You‘d have definitely
been given a meter to use, which would have been very simple, and wouldn‘t have
given you much trouble, and there wouldn‘t have been room for much error. And
probably you‘d be given an insulin pen, so you wouldn‘t have had any of the
problems of drawing up with a syringe, and your nice pen: easy dial-up, easy to
give, very sharp, fine little needles, and slipped into your top pocket or your
(15) And then, you used the phrase, at one stage, that you love
diabetes, which is perhaps not a phrase that any patient would use. What did
you mean by that?
patients would not say that. When I say I love diabetes: as a nurse, I think
it‘s a fascinating subject. And it‘s a lot to learn, and, you know, it‘s taken
me twenty years to get to where I am now, and I still have more to learn. And
what I value is that diabetes may be all the same in all the textbooks, but
it‘s not all the same for each patient. It is completely different, and it‘s a
challenge how to meet that with each patient, and adapt it to that individual,
and listen to what they‘re saying. And we do have a great armoury of insulin
and equipment, now, that we should be able to do that with relative ease. And
it‘s still progressing, it‘s still developing, and in ten years from now, who
knows where we‘ll be. Because the number of people with diabetes has considerably
increased, over these decades, there‘s a lot more people out there who are
elderly, who need to remain independent with their medication, and how they‘re
giving their insulin, and how they‘re doing their blood glucose recording. So,
even the equipment‘s become refined to individual needs. So, somebody who‘s
elderly with poor dexterity, there are bigger, fatter pens, which are really simple
to use, with big dials that are great for them. But there‘s still the small
refined pens for the business man, who just wants to slip it discretely in his
top pocket. There‘s big display meters that are still neat, but have big
display for poorly sighted people or elderly people, who can‘t see small read-outs.
Meanwhile, there are tiny little meters that record everything you do, what exercise
you do, how much carbohydrate you eat, it might even tell you what insulin dose
to give, and it‘s got a tiny read-out, and it‘s much smaller than a mobile
phone. So, all the technology, whilst it‘s developed, has got more specialist
for different people‘s needs.