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 | Mary MacKinnon |  |  | Nurse and Diabetes Education Consultant.  Also has diabetes.Born in London in 1945.
 Overview: Mary MacKinnon was one of the earliest practice nurses, from 1980-85, and attended one of the earliest training courses, in 1983, for nurses wishing to specialise in diabetes.  Since then, she has worked as a Diabetes Research Sister and Diabetes Service Co-ordinator in Sheffield, and in the late 1990s helped set up Primary Care Diabetes UK.  She has lectured on diabetes care at the University of Warwick and was Director of Education for Warwick Diabetes Care from 2000-1.  She has published throughout her career and now works as a freelance Diabetes Education Consultant.  She diagnosed her own diabetes in 1999.
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                            | | 62.  Mary MacKinnon 
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 (1)  Tell me about your background. Well, I guess
    it‘s a fairly unusual one, in that my father was in the army, and my mother
    went with him, wherever he was posted.  So,
    I‘ve spent a great deal of my life abroad, and actually learnt to read in another
    language, because I was sent to an Italian school in
    
    
    Trieste.  And I was sent there.  My older
    brother was sent home to
    
    England
    to boarding school, because that was what happened, if you were an army child,
    whereas the daughters usually stayed with their parents.  And so, all in all, I spent a lot of time in
    Italy
    and
    France
    ,
    Germany
    ,
    
    Malaya,
    and various other places, and went to eleven schools, altogether, which made
    for quite an interesting education.  And
    I ended up going to a small boarding school, because I just had to complete my
    education, as I‘d decided that I wanted to train to be a nurse, and I therefore
    had to have the right qualifications to apply.  And because I was always changing curricula, it had been quite difficult
    to get to the right standard for the exams.  So, basically that‘s the background that I‘ve had: living abroad and
    then coming back to this country, and changing schools constantly. Was your father
    an officer? Yes, he was,
    yes.  He was an officer in a regiment that‘s
    long ago defunct.  It was merged with
    another regiment, and now it‘s disappeared in the mists of time.  And after his regimental duties, he went into
    the Ministry of Defence, and he worked with Lord Mountbatten.  And he was involved, crucially, in the
    
    
    Suez crisis, which was
    very interesting.  And after that, when
    he left the army, he went in to become a company secretary. And what made
    you want to become a nurse? I think…  We have a very medical family - mainly on,
    well, my side, and on my husband‘s side.  But at the time, they were all doctors, and going back for several
    generations.  And I wanted to be a nurse,
    I think, because my mother had a lot of ill health, I think partly due to the
    army life.  But she was always very well
    looked after at a hospital in
    
    
    London,
    and it made me think "well, yes, I would like to do that.  I would like to look after people, and make
    sure they got the right sort of care when they were ill".  And so, that‘s really what made me decide,
    from quite a young age, actually. |  | 
 (2)  And tell me about your training. Well, I‘d
    applied to train in two hospitals in
    
    London; one
    was the
    
    
    Middlesex
    
    Hospital, and that‘s now
    gone.  The other was
    
    
    St George‘s
    
    Hospital,
    which still exists.  And the reason I
    chose
    
    
    St George‘s
    was because it was the one that my mother was so well looked after in, and the
    Middlesex was the one that my brother went to.  And I decided that actually it would be… I‘d probably have a better time
    if I went to the other hospital, so I accepted that one.  And I did the conventional training, of the
    time.  That would have been 1964, that I
    embarked on that training, and it was a three year course for, as it was, State
    Registered Nurse, at that time.  And it
    was a wonderful training school, with a very good reputation.  And we got lots of experience, either working
    at the hospital at Hyde Park Corner, as it was then, and then also down at
    Tooting, which had been a famous fever hospital many years before.  And so, it was a good training.  And I qualified in 1967, and then spent a
    year as a staff nurse on a medical ward, which was for diabetes, endocrinology
    and metabolism, and that was an extremely useful year.  We had, at George‘s, to do four years, before
    you could get your hospital certificate and your buckle, as they called it.  And the reason, I think, was, it prolonged
    the training, actually, because you really started to learn your nursing after
    you‘d finished training.  And I think it
    was a very good principle. For somebody training
    now, in 2007, can you summarise what the differences were? Well, of course,
    the whole system‘s changed so much, now.  You know, you‘re either a care assistant and you train through the
    non-vocational qualification system, or you do nursing as a degree
    subject.  And I think one of the difficulties
    with this is that nursing is - I think like medicine - it should be an
    apprenticeship.  And, of course, the
    minute you put it in as an academic subject, the apprenticeship side goes.  And what we find - I‘ve had a little
    experience of working with these nurses trained in the modern way - is that they
    actually, once they‘re qualified, know very little about real nursing.  They know the theory, and they‘ve done the
    sort of academic side, but so much of it is practical, and you don‘t learn it
    from books. 
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 (3)  So, perhaps some more detail
    about what it was like. About the actual training.  The training, at that time, was very well organised, certainly in the
    hospital that I was in.  You had two
    months, or so, of preliminary training… it may have been three months of preliminary
    training school; PTS, it was called.  And
    then you were launched onto the wards, with a certain amount of supervision,
    but not a huge amount, because the supervision was then taken over by the ward
    sister, in those days.  And I did most of
    my training at Tooting, and this was the old fever hospital, and it had long
    Nightingale wards.  You‘d have twenty
    six, twenty seven patients in them.  And
    you walked up and down those wards, and it was very, very tiring at the end of,
    you know, an eight or nine hour period.  And they were open wards, just with curtains between the beds, and old-fashioned
    buildings, and it was very, very hard work indeed.  And you had to fill in a book with your…
    having achieved certain procedures for the first time.  And a staff nurse would supervise you, and
    then you would, as it were, take it as a test, and then you‘d have it signed up
    in your book.  You know, might be doing
    your first dressing or your first injection.  And certainly, I can remember being very worried about giving injections,
    because the equipment we used was… were glass and metal syringes and needles.  And they all had to be boiled, and you picked
    the needles out of the steriliser and looked at them, because very often they
    were barbed at the end.  And you imagine
    giving this to a… an injection to a patient with a barbed needle was not very
    nice.  So, the injection technique was taught
    on an orange, in the training school, and then came the day of your first
    injection.  And you picked up the syringe
    and the needle with some Cheatle‘s forceps, and you‘d put them in a metal
    casing with a lid on it, that had also been sterilised.  And there was a piece of cotton wool - a dry
    cotton wool - and a piece of cotton wool with spirit on it, and you would then
    take that, with the medicine card, to the bedside of the patient.  And that‘s, basically, the sort of procedure
    that you would be signed up for.  And,
    obviously, they got more and more complicated as you did more and more
    important procedures.  And so, everything
    you did was checked.  And so, it was
    really very rigorous, and you didn‘t get signed up if you weren‘t competent.  And I think finding out about competency, 
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 (4)  in a practical way, is very important.  You know, you can learn the theory of doing
    something in a book, but you can‘t… you have to learn the practice of it, and its
    application to the care of patients.  I
    think we used to nurse people, for instance, who came in in diabetic ketoacidosis.  I very rarely saw a well person with
    diabetes, in those days.  My experience
    was almost entirely of people admitted in an emergency situation, who were in a
    coma.  And we would have them - quite
    often, six of those - at the beginning… the first part of the ward, which was
    where the more acute patients were nursed, and you would have six or seven on
    respirators.  And they weren‘t in an
    intensive care unit; they were on an ordinary ward, and they were on these
    machines, because they couldn‘t breathe themselves.  And you might be allocated to look after two,
    two or three of those, and that was what your job was.  And, obviously, you had to be fairly senior
    to do that work.  And it‘s interesting: I
    mean, I don‘t think you‘d nurse people like that on a medical ward now, and we
    took that as completely normal. Were they in a
    coma because they hadn‘t been diagnosed with diabetes, or because something had
    gone wrong? I think both
    situations.  The diagnosis was missed, or,
    I mean, the self-management of diabetes may have been poor, or they may have
    had an inter-current illness which tipped them over.  And, of course, we didn‘t have blood glucose monitoring,
    in those days.  Everything was done by
    urine testing, using tablets - Clinitest tablets - and so on, and it was very
    imprecise.  So, if patients were testing
    their own urine, they would not be able to gauge whether things were going much
    worse than the very worse, because they were using urine testing tablets; if
    they got them at all. 
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 (5)  And tell me about insulin in the 1960s. Well, everybody
    used to - well the nurses, especially the more junior ones - used to dread it
    when someone with diabetes came in, because - came into hospital - because then
    it meant, of course, they would be giving insulin.  And in those days, it was in a very different
    form.  We didn‘t have hundred unit
    insulin, in those days; it was twenty, forty, eighty insulin.  And so, therefore, you had to work out what
    the dose was, because of the concentration of the insulins that were used.  And it wasn‘t uncommon - I wouldn‘t say very
    often - but it wasn‘t uncommon for mistakes to be made, and it was something we
    all dreaded.  And so, to cover our backs,
    we used to make sure that we had two people check it out every time.  It did make for complications.  I think, probably, the mistakes were less
    than they might have been now, because in those days, you did have a very
    constant workforce.  You didn‘t have
    people coming from agencies to nurse patients on the ward, who didn‘t know the
    ropes and didn‘t know the patients.  We
    did used to have a very constant workforce.  We worked for… there were "X" number of nurses for the ward,
    there was a rota done, and you did seven nights on and four off, and then you
    went on to days for the rest of the month, and so on.  So, night and day, you had a constant workforce.  And from the point of view of patients, the
    continuity of care, I think it was wonderful, that system.  And I think they were able to retain staff, because
    we had a very, very strong hospital… the value of nursing and nurses was very
    high.  And every day, the matron, or an
    assistant matron, came round; they spoke to you personally; they would roll
    their sleeves up if there were people off sick, they would roll their sleeves
    up and actually come and help, you know, if the staff were short.  And I think it‘s about feeling... we felt
    very proud of the ward we were on, and very proud of the hospital we were in,
    and I think that makes for good patient care. And with regard
    to diabetes, what are your most vivid memories from the 1960s? I think what I remember
    is the… how sick, and how very, very ill the people were, who were admitted to
    hospital.  I didn‘t see much of those who
    attended outpatient clinics.  I wasn‘t
    involved, really, at all in their management or follow-up, but looking after
    them when they were very ill.  And they
    usually were very, very ill, and very often died, because they were in such a
    bad state when they came in.  And the
    knowledge of the physiology and the corrective treatment was - although it was
    good - was, of course, nothing like it is today.  So, what I‘d say is, you know, that severe
    diabetes, and diabetes with its acute complications, was often a death sentence,
    and that‘s probably the thing that hits me most. 
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 (6)  What did you do after your training ended? Well, having...
    I first of all completed my year in the diabetes and general medicine ward at
    
    St George‘s, and then got married, and we went to live in
    
    
    Hastings.  And my husband was a surgeon, so he got on
    with that, and I sort of made our first home.  And then was called by someone from the hospital, who knew that I‘d
    recently qualified, and asked me if I would consider applying for a job that
    was coming up, which was working in a ward, which was really very, very
    revolutionary at the time.  It was an
    orthopaedic surgeon who devised a system of operating on elderly people who‘d
    fractured their hips, and they… he would rehabilitate them, and they would be
    up and walking the next day.  And, at the
    time, this was absolutely astonishing.  Every
    person had their own wardrobe and dressing table; they were up and dressed.  He didn‘t want them being sick and getting
    ill and complications; he wanted to get them home as soon as possible.  So, it was a fantastic ward to work in, with
    a very unusual surgeon.  And then, they
    wanted… the ward, actually, wasn‘t safe, in terms of the staff working on it,
    to do acute surgery - general surgery - and they needed some beds opening on
    this ward.  So, my job was to go and make
    it a safe place for general surgical patients, as well as lifting the standard
    of what was there already.  They had
    quite good staff, but they had been there a long time, and they weren‘t
    desperately well-educated, in terms of keeping up to date, and I think that‘s really
    what the problem was.  So, it was a
    matter of getting something going.  And
    it was very interesting doing something completely different to medicine.  And after that, I moved and had a career
    break, and that‘s when we had our family.  So, that was a very interesting period of my life, as well; probably the
    best thing I ever did! How long was the
    career break? That was ten
    years. And what did you
    do after your career break? Well, I… by this
    time, we‘d moved to
    
    Sheffield, and this was
    going to be our final move.  And so I
    thought, "well, I‘ll go and work in operating theatres", because, having
    had a break, at least, you know, I can pick that up in a lowly fashion, and
    won‘t have too much responsibility, because I‘ve been away from it, and the
    patients will all be unconscious.  So, I
    was there for a very short time, working the hours I wanted to, because, of
    course, by this time, I had an elderly person living here, and two small… two
    young children.  So, I was getting quite
    busy.  And then, after that… that stopped,
    because my husband slipped a disc.  And he…
    I was called home, and I called out the general practitioner, locally.  And he and I, while we were dragging my
    husband across the floor on a mattress, because he couldn‘t move, and he was…
    the morphine he‘d been given was taking effect, the GP asked me if I‘d like a
    job.  And that‘s actually what
    happened.  And he said "well, when
    your husband‘s better and things have settled down, come down to the surgery
    and see me".  And that was really
    the start of my career. 
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 (7)  Tell me about the job in the GP‘s surgery. Well, this would
    have been 1979, and this was a practice nurse job.  They had had someone there before, doing
    general practice nursing, and a little bit of diabetes, as there‘d been a
    research nurse going around
    
    Sheffield setting
    up some clinics, because, as a research exercise, a thousand patients were
    discharged from diabetic clinics, in the hospitals, to their GP.  And then there was a paper written as to the
    results of this exercise.  So, there had
    been a little bit of diabetes work done in this surgery, but it was fairly
    minimal.  And, of course, working in
    general practice is very different from working in a hospital, and so I had an
    awful lot to learn.  I was faintly
    horrified to find that, when I got there, that instruments were boiled up in
    saucepans, and they quite enjoyed doing a little bit of minor surgery, and
    there was quite a lot of prescribing, actually, from within the practice…
    dispensing, rather.  And so, it was a
    completely new world.  It was doing
    things like dressings, travel protection, vaccinations, baby clinics, diabetic clinic,
    hypertension clinics; really, a very busy job indeed.  And with a practice… it was a practice that
    had a main surgery, with a very mixed population of Asian people and white
    people, and a Polish population - several of whom had actually survived
    Auschwitz, and they were very special, those patients.  And then there was a branch surgery in
    another part of
    
    Sheffield, a little further
    out, which had a completely different middle class, white, affluent population.  So, it was very interesting.  And I mainly... I worked one day a week at
    the branch surgery, and the rest of the time at the main surgery.  And this was a part-time job, but it felt
    like it wasn‘t part-time.  There was just
    me, as the one nurse, with about four partners, and several very good
    receptionists.  There was just one that
    was a little bit awkward at times.  And I
    had an interesting place, which I had to learn about, where I was in this... it
    was a small organisation, it was a business.  We also had a practice manager.  But, on the whole, a very happy practice.  It was also a training practice for GPs,
    which made it interesting too. 
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 (8)  How common was it to have a practice nurse
    and a practice manager, in 1979, 1980? Practice
    nursing, practice managers, really, were in their infancy, at that point.  And it wasn‘t very long... I would have said
    I‘d been in the job about a year, maybe two years, when I realised how isolated
    you could be, as a nurse.  And I set
    about working… trying to work out how many practice nurses there were in
    
    Sheffield, and wrote to them all and suggested we had a
    group, and set up a group.  And I‘m
    pleased to say that‘s still there, and flourishing, today.  And, in fact,
    
    Sheffield,
    in 2007, will host the National Practice Nurses Conference for the second time.  So, it was very, very early days.  And I remember the first practice nurses‘
    meeting; there would have been about twelve people.  And we had a dermatologist come and talk to
    us about looking after venous ulcers, which were a big problem that practice
    nurses had to deal with, at the time - patients coming to have their dressings
    and treatment done at the surgery.  So,
    practice nursing was new, and so was prac… practice managers were fairly new -
    I would have said slightly less new than nurses.  But, of course, general practice is a
    business, and the practice manager really had a very responsible job to do.  And it was an important role that has obviously
    been developed hugely since then.  But, I
    think it came home to me, one day, about practice nursing being a business - a
    very important lesson that I learnt, before developing my career in diabetes.  And I was hauled over the coals, by the GPs,
    for costing them a lot of money, in terms of buying dressings and so on, to
    deal with whatever I had to deal with, because there‘d been nothing there.  I mean, there was just nothing there when I
    went there, and, in fact, it wasn‘t even very clean.  So, I had to put into principles… put into
    practice, principles I had learnt about - you know, cleanliness and
    disinfection, and all that kind of thing - into this organisation.  So, I did a little research exercise, and I
    actually wrote down every single thing I did, everything I bought.  I got it checked with a pharmacist, from whom
    I bought all the items, and I worked it out.  I then set it down on paper, and asked to meet with the GPs, which
    wasn‘t a regular occurrence, at that time.  Generally, the GPs had their own little meetings, and I wasn‘t
    included.  Anyway, I then presented to
    them the results of this exercise, and it worked out 
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 (9)  that I had spent a penny on each patient.  And they never questioned my judgement
    again.  But it did teach me that you
    actually have to think in terms of business, when you‘re thinking about general
    practice, because that‘s what it is. You mentioned
    that before you became a practice nurse, there had been this research exercise
    discharging people from the hospitals.  Did this mean that your patients with diabetes were just coming to you,
    or…? Right, that
    was... the research, where a thousand patients were discharged, was, as it were,
    a discreet project; it was a properly conducted research programme.  A thousand patients were discharged, and, of
    course, the result of that was that many of them thought they‘d been cured, because,
    again, this whole thing about communication and education just wasn‘t there, at
    that time.  And so we had, in the
    practice, I started to look at the diabetes, because I‘d always been interested
    in it, since that ward long ago, and there had been a little bit done.  They had… they did have a dedicated session
    for diabetes - they‘d got that going.  But,
    at that time, there were a lot of people not diagnosed; they didn‘t have a
    register - proper register; they didn‘t have the items, you know, educational
    things for patients; they didn‘t have a dedicated protocol.  It was just, you know, seeing some patients,
    and if they had problems then I would refer them to the GP.  So, I set to work, really, to start putting
    this into an efficient, organised session.  And I also was worried about the number of people who we knew about, but
    didn‘t come to this clinic, or couldn‘t come.  Because we identified, I should think, probably it would have been under
    2%, which would have been about right for that time, that you would have identified
    that number, knowing there were another 1 to 2% around undiagnosed.  So, I asked the doctors if I could have one
    day a… one session a month, in my car, visiting people to give them a check-up;
    a sort of annual review.  And they agreed
    to that, and would follow up if I asked them to.  A doctor would go if this person had... it
    was identified they had a foot problem, or they had other medical
    problems.  So, actually, it was a very
    flexible service, which dealt with people who couldn‘t come to the surgery, or
    couldn‘t come to the branch surgery.  We
    could see people at home, so it was really quite forward thinking, I think, at
    the time. What kind of
    people came to your diabetes clinic? Well, they would
    be generally people with Type 2 diabetes.  Once I‘d got all the notes out, and started looking through them, which
    is what I had to do to set up the register, and start picking up people who
    hadn‘t been diagnosed.  The people with
    Type 1 diabetes, historically, had virtually always gone to the adult clinics
    in
    
    Sheffield; the two main hospitals.  And then the other category, of course, would
    be the children, and they, historically, had always gone to the Children‘s Hospital,
    or they used to have a clinic at the Northern General.  So actually, provision for Type 1 diabetes
    and children with diabetes was very good, so we didn‘t have to worry too much about
    those people, because we knew they were getting looked after.  But if they... not infrequently, once the diabetic
    clinic was really well established, people with Type 1 diabetes would ring up
    and come down, and say, you know, "I‘ve got a bit of a problem about something".  So, we did see them occasionally. 
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 (10)  To what extent were you specialising in diabetes,
    during this period 1980 to 1985, as a practice nurse? Certainly, the
    beginning of this five year period, I wouldn‘t have said I was.  I was busy learning about general practice
    and all about it, and trying to develop a good service to patients.  But my interests in diabetes did increase,
    and we got more and more patients, so that it became a very big clinic.  And it was at that point, I thought I really
    needed - especially having had a career break, and so on - I needed to learn
    more myself, and get involved more.  So,
    I went up to the
    
    
    Hallamshire
    
    Hospital, and, in fact,
    got involved with Professor John Ward‘s unit; and he was very helpful.  And I told him what we were doing.  I even asked him to come out with me and meet
    the general practitioners, because clearly there was something really important
    about good diabetes care, and in general, the GPs had been fairly dismissive of
    hospital diabetologists.  In other words,
    I could see this huge chasm between general practice and hospital diabetes care.  But, at the same time - and we‘re looking at
    around 1983, or so - a psychologist, Clare Bradley, was working in
    
    Sheffield, actually with Professor Ward.  And she started to talk about: let‘s do some
    work with people with diabetes - in the hospital, mainly - in groups.  And I got involved, as a member of that team,
    because I could fit it in with my other work, and so we started running group education
    sessions.  These were structured, and the
    best bit was having lunch with everybody.  The dietary bit wasn‘t done as a talk; we all sat down and had lunch
    together.  And most of the issues,
    surrounding diet, were dealt with in the conversation over lunch, which was
    quite a nice way of doing it, I think.  So, I got very interested in diabetes.  I got involved with the researchers, and involved with the beginnings of
    our education programmes in
    
    Sheffield.  And then, I had the opportunity to go on - as
    one of the first groups of nurses - to the very first diabetes training
    programme in the country.  And that was
    actually developed by someone called Janet Kinson, who‘s a very well-known
    nurse - there‘s a named lecture after her - and she was very inspiring.  And a lot of the sort of old lags of us, in
    diabetes, were on that programme.  And so,
    that was a key point, really, because it made me realise: yes, I did want to do
    more in diabetes.  I had to make a
    decision, at the end of five years.  Would
    I stay in the practice and carry on, or would I do something else?  And I had this sort of idea that: wouldn‘t it
    be great to go around all the general practices in
    
    Sheffield.  I had links with many of them, because I had
    set up a practice nurses‘ group.  And I
    would actually do a semi-structured interview with the general practitioner, in
    that practice, and do this as a research project: find out what they do and why
    they do it, what services is there to patients.  Remember, going back to those thousand people who were discharged, who
    thought they were cured: what actually was needed was a service in general
    practice for people with diabetes, but did they actually get it?  And so, that‘s what I set out to do.  So, I resigned from the practice; a very
    happy five years.  And having put forward
    this idea, and supported by John Ward, we applied to Servier for a grant, and
    they gave a grant for three years to do this work.  And it was completed on time, and written up
    in the British Medical Journal. 
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 (11)  I‘d like to back-track to ask two
    questions.  First of all, why were the
    GPs dismissive of hospital consultants, regarding diabetes? I think it was because
    they were, sort of, in ivory towers.  They were the specialists, they were the experts, and I guess were
    pretty dismissive of general practice.  They really didn‘t think... the consultants didn‘t think that general
    practitioners could look after people with diabetes at all.  And, of course, what we‘re seeing here was
    the development of a specialty.  And
    naturally, the doctors in hospitals wanted to establish their territory, their research,
    and so on, and, therefore, they were the experts; and one can understand that
    side of it too.  So, there was a chasm, because
    GPs thought they could do quite a good job with people with diabetes, and look
    after them.  Specialists thought they
    could do a very good job.  And, of course,
    then that was really turf wars time. And you mentioned
    a specialist course that you went on in 1983.  Can you tell me more about that? Yes, this was a fairly
    new venture; it was called "Specialising in Diabetes for Nurses".  These weren‘t people who were deemed as specialist
    nurses, in that time.  They were general
    nurses, but they did have an interest in diabetes, and were looking to gain
    expertise in the subject.  And it was a
    three or four day course, as far as I remember.  Very intensive: first thing in the morning, until quite late in the
    evening.  And it was monitored; it was… there
    were several well-known people both on it, and looking after it.  And it took place in
    
    
    Birmingham.  It was a… Janet Kinson, who ran it, was, in fact, a nurse tutor herself,
    who had got involved with some of the clinical work in the outpatients in
    
    
    Birmingham.  And I think it was probably the understanding
    of what people with diabetes need, and the understanding that nurses, in
    particular, weren‘t able, really, to provide for that need, that she decided
    that something needed to be done.  There
    needed to be education of professional nurses, in order that people with diabetes,
    also, were able to learn more about their condition.  So, this course, in
    
    
    Birmingham, run by Janet Kinson, was inspirational,
    not only to me, but also to many other people.  And I think the education of nurses - who were then, really, lead the
    way in the specialism of diabetes - and the advent of blood glucose monitoring,
    and, of course, the U100 insulins, were really very important in the progress
    of the care of people with diabetes in this country.  So, the 1980s was a very, very important
    time. 
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 (12)  And what were the most important things you
    learnt from your three years of research, ‘85 to ‘88, going round to general
    practitioners? Well, I think
    the first thing to say is, I made a lot friends; I hope I didn‘t make any
    enemies.  But it did mean getting in my
    car with some nice things, and booklets, and interesting things, which I could
    take to general practitioners.  And very
    often, practices are hungry for that sort of thing.  They need things for their patients; they don‘t
    always get them so easily as diabetic teams do.  Is that they really want to be loved, and to go into a room and ask a GP
    about their family and children, and what their life is like.  It‘s very important.  And I learnt an awful lot that, you know,
    people‘s expectations of a general practitioner are pretty high.  And in those days - I‘m not so sure it‘s true
    now - they were absolutely committed and dedicated to their patients, on the whole.  There were, of course, some general practitioners
    who I was extremely concerned about what was going on.  And so, I learnt a lot about standards: where
    there were appropriate standards of care, and where there were certainly inappropriate
    standards of care.  And I also learnt
    about the business side, as I‘ve already mentioned, of general practice, and
    how to use that to good advantage.  For instance,
    like saying that if people employed a practice nurse - which is what I started
    off by doing - if they employed a practice nurse, they could actually make
    quite a lot of money.  They could also
    make money if they ran a diabetes clinic.  But I had to have all this prepared beforehand.  So, I had to appeal to the nature of the
    general practitioner, and understand the culture of the practice, and also the
    hierarchy within it, because it‘s a mini-organisation, which can go very wrong
    if people don‘t get on with each other.  So, it was very interesting learning all about the different cultures of
    general practice in the city. How could they
    make money out of running a diabetes clinic? Well, for a
    start, once you‘ve identified people with diabetes in a practice, they‘re a
    captive population.  And very often,
    they‘re older people, because they‘re older and they‘ve got Type 2 diabetes,
    and they may have other medical problems.  If you employ a practice nurse, and clearly there‘s an outgoing from
    that point of view, you can actually make money on all the different items of
    service that are provided.  Certainly in
    those days you could - I think, to some extent, if not more so, now.  For instance, if you‘re giving a ‘flu... if
    we were giving ‘flu jabs, they got... the GP would get paid for each one, and
    you filled a form in.  So, employing a practice
    nurse, and having a designated group of people with a medical condition, you
    could actually make quite a lot of money, just through doing those two things. 
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 (13)  What did you do after you completed your
    three years research? Well, I really
    wanted to get into and work in diabetes full-time, as a specialist nurse.  And, in a way, I‘d been doing specialist
    nursing, in a research sense, for three years, although I hadn‘t had my own
    patient load; I wasn‘t employed as such.  But basically, was very keen to bridge the gaps in the city.  And a co-ordinator‘s job - a diabetes nurse
    specialist co-ordinator‘s job - came up, and I applied for it and was
    successful.  And so, I had the job of - as
    a diabetes nurse of my own patient load - of working across the city, working
    in specialist and primary care.  And the
    other side of it was, slightly after that, I was very keen to set up a proper
    training for nursing in diabetes, with our school of nursing, as it was
    then.  It‘s now a university department,
    but, at that time, it was a college of nursing.  And this was to set up English National Board courses in diabetes, which
    were available at that time - they‘d become available.  It was the ENB928 in Diabetes Nursing, and
    later on we also were able to put on a diploma level course in
    
    Sheffield - because I could see that we could improve
    patient care.  But if we wanted to
    develop nursing, in terms of nurses in general practice knowing about diabetes,
    and also community nurses - but also to grow specialist nurses in the future -
    we certainly had to have a specialist training programme, which was nationally approved.  So, my job was actually split between working
    for the university, to develop the programme and run it, and also my clinical
    load, and co-ordinating diabetes services across the city.  And at that time, when I was first appointed,
    I was based at the
    
    
    Northern
    
    General
    
    Hospital.  And very soon we had a diabetes centre there,
    because the consultant, Dr Colin Hardisty, had worked really hard to get this
    building.  And it was actually… we had no
    staff, nobody there - just myself and another nurse, who was appointed after
    me.  And the only way I could run a diabetes
    centre, which was the first one in the city, was I appointed and trained women
    from the Women‘s Royal Voluntary Service, who did it as a voluntary job.  We paid their expenses, and it was really
    successful.  They provided secretarial
    and tender loving care services; they looked after the stationery and all the
    supplies; and they did it in their own time, for nothing.  But that was because there was no other way
    of doing it. 
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 (14)  And what are your memories of this diabetes centre? Well, it was
    really lovely to have it, because it meant we could actually run diabetes education
    sessions; we could see people one-to-one - the nurses could; it enhanced the
    work that was done in the outpatient department, which were traditional diabetic
    clinics, where people would go in and have their consultation with the doctor,
    and it would be five minutes, ten minutes, out of the door.  What the diabetes centre meant was, we could
    bring people, who were newly diagnosed with diabetes, in.  Often they might be distressed, or even if
    they weren‘t, they certainly needed to learn a lot about managing their own
    condition.  It meant we could do all that,
    and we had a place to do it, and a base for a small team to work.  So, it was very, very important to set this
    up, to get diabetes on the map, and move diabetes care on, really. And can you talk
    about the staffing of the diabetes centre? Well, the
    staffing of the diabetes centre was, as I‘ve said, we used volunteers.  There were two nurses - my colleague and
    myself - based in it.  The consultant and
    his secretary was based in it, and that was a good thing.  And then… in fact, we had two consultants and
    two secretaries based in it, subsequently.  And then we also, of course, involved other members of the diabetes
    team, like the podiatrist, dietitian and so on, and also, of course, relatives
    of people with diabetes; very important.  The dietitians and podiatrists would come over, for instance, and see
    someone on their own, or they would participate to run group sessions.  People could also see them, obviously, when
    they attended their outpatient appointments.  But again, the outpatient situation, it was very much a bit of a cattle
    market, and whereas the diabetes centre, it gave people a bit of a chance to
    breathe.  It meant we could all work
    together as a team.  So, I think it was…
    it wasn‘t an adjunct, it was essential; but it was a different way of doing
    things to just running a clinic. What do you mean
    by "a bit of a cattle market" in the outpatients? Well, it always
    felt like that, as a nurse.  I mean, the
    diabetes nurses also worked in the outpatient clinic, so we saw the patients
    right the way through.  And it was very
    difficult to listen to people who might be upset - the facilities weren‘t very
    good for that, and there were just streams of people, just coming in and going
    out, and looking rather confused.  And,
    of course, they had to come in and have their urine tested, and they got
    weighed, and then they sat down, having registered themselves.  And then they‘d have to wait, and sometimes
    they waited so long, they went hypoglycaemic - and that was not unusual.  And, in fact, it happened so much that we
    started... you know, we wrote… we actually developed leaflets saying, make sure
    you bring something to eat in case the cafeteria‘s closed; explaining to people
    that they, you know, they might be there some time.  And I think that three hours, waiting for an appointment
    - a timed appointment, very often; they were waiting for a long time - it‘s
    just not good healthcare. 
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 (15)  When did these large outpatients‘ clinics for
    diabetes come to an end? Well, they seemed
    to go on for a very long time.  And we
    made some changes, I think, in
    
    Sheffield, by
    training nurses to do quite a lot of things that some doctors had done, which
    made the patients‘ wait better, less long.  And I think people began to realise that this really wasn‘t a good idea,
    to have all these patients coming at the same time.  And they started to peter out as the thinking
    changed, and people went to conferences, and the thing was being discussed.  So, I would think, moving through the 1990s,
    they started to be looked at in a different way. So, what were
    the key developments, then, while you were a diabetes co-ordinator, between
    1988 and 1999? I think the
    establishment of more diabetes physicians, under the leadership of John Ward;
    the establishment of diabetes nursing in the city; the training, not only of
    nurses, but also of general practitioners; and continuing the education of
    people trying to work together for diabetes.  The diabetes specialty was thoroughly established in both hospitals in
    
    Sheffield, with dedicated teams in diabetes centres.  And that was really crucial to the further
    development of other important...  Yes,
    what I was going to say was the important area of eye screening, which, of
    course, is of particular relevance today.  But, at that time, very few places had organised eye screening
    programmes.  And I was fortunate enough
    to work with the health authority in getting the
    
    Sheffield
    eye screening programme established, with the ophthalmology team and the general
    practitioners.  And it was a great
    project, and everybody was very proud of it, and rightly so.  But what comes out of it all is about people
    working together as teams, and trying to be as little territorial as possible.  I think, if you keep remembering what you‘re
    there for, which is actually for patients or people with diabetes, and that‘s
    all it‘s about.  Unfortunately, of course,
    human nature isn‘t like that.  But I do
    think that, at that time, we were very lucky, and people generally were working
    together, with a certain amount of healthy rivalry, across the city. 
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 (16)  And what did you do after you ceased to be
    diabetes co-ordinator in
    
    Sheffield, in 1999? Well, I felt
    very strongly that in working with the British Diabetic Association, which I‘d
    been involved with on and off for many years, it was important that part of the
    BDA was a dialogue with general practitioners.  And there had been discussions about this, that there should be a
    professional section of the British Diabetic Association dedicated to people
    working in primary care.  And I felt very
    strongly about it.  And working with many
    people in the country - GPs, the industry, the Diabetic Association, and others
    - we set up Primary Care Diabetes
    
      
      UK
    , which was a professional
    section of the British Diabetic Association.  This already had a section for nurses, and a section for
    diabetologists.  And so, my point, at the
    time, was, if you‘re looking after people with diabetes and working in a team,
    and you want to have a conversation, you have to have people there to have the
    conversation with.  And, in general, it
    hadn‘t been recognised that primary care had such a place in diabetes
    care.  And so, that‘s why I was seconded
    to the British Diabetic Association, as a consultant, to work, to set up a new
    section of the Association dedicated to primary care.  And that‘s basically why I left my job in
    
    Sheffield.  It was
    a secondment, so I still had the security of knowing I could come back, but, of
    course, when you leave a place, you don‘t go back, ‘cause you have to go
    forward, on.  And I‘m glad to say that
    the team that I left are still here in
    
    Sheffield,
    and being very ably looked after by my successor.  And having set up Primary Care Diabetes
    
      
      UK
    , I thought,
    well, that was a pretty challenging thing to do, maybe I‘ll stop at that.  But then I realised that there was still more
    to do, and that was to, on a large scale, develop programmes of education in diabetes
    for general practitioners and their teams.  And so, I couldn‘t do that in
    
    Sheffield,
    it wasn‘t possible, but it was possible at the
    
    
    University of
    
    Warwick.  And that‘s where I went to develop these
    ideas, with a very able general practitioner, who‘s still there, Dr Roger
    Gadsby.  And it was, again, the right
    place, the right time.  And the
    
    
    University of
    
    Warwick, which has a reputation for
    entrepreneurship, took the idea on board, and we set up Warwick Diabetes
    Care.  And I guess I finished my formal
    career there, in 2001, as a Director of Education for that organisation.  And this was about training leaders to run programmes
    locally, in
    
      
      Scotland
    ,
    and all round the
    
      
      UK
    ,
    and abroad, and also to run programmes in and around the
    
    
    Warwick,
    
    
    Coventry,
    
    
    Birmingham area, so that general
    practitioners and their teams would, as it were, be empowered by a programme,
    which had a recog... was of a recognised standard.  And so that‘s basically it, in a nutshell. 
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 (17)  And can you talk about your own diagnosis
    with diabetes? Yes, I can.  I was quite ill at the end of 1998, over
    Christmas.  I remember having ‘flu - real
    ‘flu, not just a bad cold - and it seemed to take a long, long time to get
    better.  And I had been preparing to go
    to
    
      
      Cameroon
    to run a programme, for French-speaking professionals, in diabetes, ranging
    from doctors, nurses, managers, from forty countries - in French.  And this was a programme we‘d already run for
    English speaking Sub-Saharan African countries.  And while we were there, we asked people, over this week‘s period, that
    they attended the programme in Yaoundé.  We asked the participants to do their own blood sugars, and look after
    their diet, and so on, as far as they could, just to get a little inkling of
    what it might be like.  The programme,
    itself, had been sponsored by a diagnostic company, who provided blood glucose
    meters for each person on the programme.  And, in fact, none of them had blood glucose meters for their patients
    anyway, so it was... they were delighted to have these… this technology.  And so, we all used these meters, and
    everyone did their blood glucose tests.  And I was horrified to discover I had a blood glucose of fifteen millimoles,
    which is a little on the high side.  And
    so, I shut it quickly, and hoped nobody had noticed.  And then, unfortunately, someone did, and
    said "what was yours?", and I told him, and he said... well, he was absolutely
    horrified.  And I said "well, there
    you are".  So, we… In actual fact,
    that exercise, with forty people, produced one person with diabetes, and
    another person with impaired glucose tolerance - one of the general practitioners
    there.  And I, actually, was completely…
    I just took this in my stride, at that moment, and said "right, I‘ll let
    you know, I‘ve got a blood glucose of this.  I want you to go away, and I want you to do a workshop.  Put on your flipcharts, you‘ve got a newly
    diagnosed middle-aged white woman.  I
    want you to put down the management of this person", as part of their education.  And so, off they went.  They went off and wrote hundreds of things on
    the flipcharts, and they, you know, they had everything covered, came back, and
    fed back in French, and I sat back and listened.  I should say that we had simultaneous
    translation. 
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 (18)  I can understand some French, but not nearly
    enough to be able to deal with it.  They
    fed back their results, and I have to say - then they asked for my comments -
    and I said "well, I think… I like what you‘ve done, I like it very much.  It‘s just like you see in a textbook.  But", I said, "I‘ve just been
    diagnosed with diabetes; I am absolutely shaken rigid.  I don‘t actually know what I‘m doing; I don‘t
    even know what I‘m saying.  But I guess
    that the person who‘s helped me most, this afternoon, having listened to what
    all you‘ve said, is the young man over there who brought the blood glucose
    meters from the United States, because he came, put his arm round me, and said:
    how are you doing?".  And actually,
    that‘s the only information I needed, at that point.  So, what I found I could do was, my
    professional side was so tuned in to what I was doing, that my personal side
    almost disappeared completely.  But
    actually, I was very, very upset, and cried buckets when I went to my
    room.  I also found, I couldn‘t stop
    doing my blood sugar.  And I kept doing
    it and doing it, saying "it‘s an American machine, it can‘t be any good,
    it‘s telling lies".  And that was
    the sort of state of mind.  And I would
    never - as a professional - would never have guessed that‘s how someone reacted.  You know, in theory, people are bereaved,
    they‘ve lost their health; it‘s what it says in the books.  But actually, when it comes to the personal
    thing, it‘s really important that… all the right medical things should be done,
    but the important thing... the whole progress of this person‘s diabetes is set from
    that moment in time, and if it‘s not well handled, then they will have
    difficulty.  And that was the huge thing
    I learnt from learning I had diabetes.  I
    could tell you an awful lot about what happened after that, but I‘m not sure
    you want to know! 
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 (19)  And what was life like for you after you were
    diagnosed with diabetes? Well, it wasn‘t
    as I had thought it would be.  I sort of
    went off on a walking programme, and thought I had Type 2 diabetes, and was
    treated so, for quite a long time.  And I
    discovered that there were certain drugs didn‘t suit me, and in fact I was
    really quite ill, with a lot of infections and fairly poor control for the
    first two years.  And some of that was my
    not understanding that I didn‘t have conventional Type 2 diabetes, and I
    actually needed insulin, probably from the beginning, because I‘d had pancreatitis
    as a child.  And it wasn‘t until I
    went... someone else went back on my medical history, from childhood, that I
    remembered that I had been investigated for this, for unexplained abdominal pain.  And, in fact, there‘d been a paper at the Diabetes
    UK conference, I think, two years ago, or a year ago, which actually alerted me
    to remembering that I had had this abdominal pain, and kept being investigated
    for it.  And it‘s been suggested that
    that was probably pancreatitis.  And so,
    I had a slightly unusual form of diabetes, which neither I nor the general
    practitioner, nor anyone else, thought about, which is interesting, because what
    it teaches you is that you need to see people who know more about it than you
    do.  And actually, it did prompt me to
    ask for a specialist referral, and it‘s only since this specialist referral
    that my… the understanding of my own diabetes has become much better.  And that‘s interesting, because I‘ve been a
    proponent of diabetes in primary care.  But,
    in fact, when I went… did eventually crawl to the surgery, and ask for a prescription
    of insulin, the general practitioner didn‘t want to look after me any
    more.  And now, of course, we‘re
    encouraging GPs to look after people on insulin.  So, it‘s interesting how attitudes change,
    particularly when money‘s involved. 
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 (20)  What do you mean by that? Well, diabetes care,
    now, has changed.  It‘s changed
    dramatically, since the Quality Outcomes payments have come into general
    practice.  GPs now get paid for providing
    certain items and ticking boxes, and that‘s the way diabetes care is now
    done.  And, of course, if you want to
    have lots of ticks of people with good blood glucose control, you‘re perhaps
    more likely to want to put them onto insulin rather earlier than you did before.  And so their blood glucose control would be
    better, because they‘re on insulin, and therefore you will get paid for doing
    such a thing.  So, there are some
    interesting ethical questions about the way diabetes care was provided before,
    and the way it‘s provided now, and which way is the right, and which way is the
    wrong way. And what‘s your
    own opinion? Well, I think
    it‘s a sad way of dealing with healthcare.  It‘s, as it were, goods for payment.  The goods for payment happens to be, as it were, my blood pressure and
    my blood glucose.  On the other hand, one
    could say that right across the country, this is a great improvement, because
    those things are being tested, and treatment of those patients is, therefore,
    having to be improved.  So, there is, on
    the one hand, great admiration for this, that it‘s an improvement in diabetes
    care overall.  But not, necessarily, on
    the quality of care for the individual concerned, who may feel just like
    they‘re being called up to have a box ticked.  And that‘s my experience of it.  I
    have actually been called up to the doctor‘s surgery, because one box was not
    ticked.  They weren‘t interested in me;
    they were interested in the box.  In
    other words, I hadn‘t, you know, had one item done, one blood test done, and
    that was that.  So, you could say, in
    some ways, it‘s a very good thing.  But
    what it‘s not doing is providing continuous care, quality of care, education,
    information, necessarily for people with diabetes, because really, all they
    have to do for the money is tick the box. 
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 (21)  And can you talk about the combination of
    being a health professional, and being someone with diabetes yourself? Yes.  That is a very interesting question, and
    it‘s...  Having diabetes myself, having
    been working in it for so many years, has given me, what I suppose you could
    call, a dual insight into this condition.  And I thought I knew something about diabetes.  And then I found, when I was diagnosed with
    diabetes, I didn‘t know anything about diabetes, and I had to start all over
    again.  And basically, there‘s a journey
    that you go on.  You go on it as a
    professional, but it‘s a different journey that you go on as someone with
    diabetes.  And even though you may know a
    lot, you know nothing.  When you‘re newly
    diagnosed, you know nothing about your own diabetes.  And that‘s the important thing.  And the dual insight, I do feel, is really
    interesting, and, in fact, I gave a talk at the
    
    Isle of
    Wight conference after I was diagnosed.  And it was about this insight of now having
    diabetes, and, you know, that I had... I felt changed.  Not changed hugely - I hope I was reasonably
    empathetic before - but I have to say that most of the support I‘ve had has
    come from other people with diabetes, because you‘re really on the level.  And no one else, it doesn‘t matter how clever
    they are, can actually understand what it feels like to live with diabetes.  And everybody has their own way of doing
    that.  And it was because of that, that
    it was suggested to me - and with some other people who live with diabetes, and
    work in it - we‘ve set up something called PROUD, which is Professionals United
    by Diabetes.  And it‘s an organisation,
    which has been kindly, mainly, funded by Novo Nordisk.  And we‘re setting up a network of
    professionals who live with diabetes - or they may be carers -but they work in diabetes.  And it‘s growing: it‘s got about a hundred
    members.  We‘re setting it up as a
    charity, and it‘s very soon going to have its own website.  And we‘ve been involved in commenting on research,
    we‘ve been involved in getting together narratives of people united with
    diabetes - professionals united by diabetes - and we‘ve now collected, I think,
    twenty five narratives, which have been displayed as posters in various conferences.  And they may be turned into a book, or we‘ll
    certainly be posting them on the website.  And the narratives are, well, obviously stories, and they‘re very
    interesting.  And they demonstrate how
    difficult it can be for someone who works in an area, like diabetes, who then
    gets the disease, or has a child with that disease.  How do they get the support that they need?  It seems to me that very often, people think
    if you‘re a professional, you‘re working in the health service, you know it
    all; you get on with it.  And I do think
    that‘s been my experience, and it‘s been the experience of other people.  And certainly, I‘m sure we can share with you
    some of these narratives, which will be available on the website, at some point. 
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 (22)  So, I‘ve got two questions to ask, then,
    about how things have changed in the forty years or so that you‘ve been
    involved with diabetes.  And first of
    all, how have things changed in terms of training? Well, I think,
    in terms of basic training, general training, in nursing and in other
    professions, clearly that much of that is improved, although I think the
    systems are so different, they‘re not really comparable between then and
    now.  What I do know is that there are
    things that are very important, which - in diabetes - which have changed and
    improved over time, and particularly, say, in two areas.  One is in the prevention of amputation, and
    the other is in the area of eye screening.  And these are the two areas that people with diabetes fear most of all:
    they fear they may lose a foot, and they fear they may go blind.  And they‘re very unpleasant complications,
    which people fear, and which we now know we can do a great deal to prevent,
    whereas forty years ago, that wasn‘t the case.  In fact, I can remember, as a second year nurse training at
    
    
    St George‘s
    
    Hospital, I did a stint in theatre; we
    all had to do that.  And I can remember
    being told, as a junior nurse, to stand at the bottom of the operating table
    with a wax bag.  And without being told
    what was going to happen, a leg was amputated and just dropped into this bag,
    and I was told to take it away.  And I
    did that, and went out to the corridor crying my eyes out, because I didn‘t
    know what to... I couldn‘t believe what I‘d seen; was totally unprepared for it,
    at, what, sixteen or seventeen years old - seventeen years old.  And I was told to... I wasn‘t told what to do
    with this.  And I wandered along, and
    eventually I found a porter, who put his arm around me and said "what‘s
    the matter?"  And I said "I
    don‘t know what to do with this", and showed him what was in the bag.  And he said "oh, I know what we need to
    do with that", and he was very upset, of course, that I‘d been put in that
    position.  What is good to know is that
    hopefully less of those legs will be wandering the theatre corridors, in this
    country, because of good management of... good understanding of what goes wrong
    in diabetic neuropathy.  And with regard
    to vascular disease, of course, there‘s a great deal can be done to save
    amputation now.  And I do think that is a
    wonderful thing.  From all those years
    ago, I‘ve had an absolute thing about saving legs, having had that experience.  And I do think that‘s a wonderful improvement
    in the care of people with diabetes, that we can really prevent many of the
    amputations.  And then the eye screening,
    of course, which is wonderful that laser therapy is available.  People can have their eyes screened, and the diabetic
    retinopathy can be arrested using laser therapy, which…  I mean, people just went blind.  And that is… they‘re two very profound things
    about diabetes, which I appreciate from then and now. 
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 (23)  Well, I was going to ask you two questions
    about how training has changed, and how the patients‘ experience has changed,
    and you‘ve talked about two major improvements for patients.  What about training, has that improved? I haven‘t been
    in clinical practice for probably five years or so, but what I do... I do keep
    in touch with people, and people tell me things.  Certainly locally, I do have evidence that
    the diabetes courses for nurses, and others - as we developed them for other
    people, as well - have gone; there are none.  And there is very little... there‘s virtually no money for any training,
    other than for basic health and safety, and there is no money for continuing
    education, in the NHS, at the current time.  I‘m talking for nurses.  I do know
    general practitioners do have some sort of funding that they can use.  Nurses on wards... in fact, all staff, who
    aren‘t doctors - and I think it‘s almost applying to some of the doctors, as
    well - can‘t get time off, and there is no funding.  And I don‘t see how you can run a competent
    workforce, people who are competent in what they‘re doing - as stated in the
    National Service Framework for Diabetes, which is what we‘re working to, since
    2000 - I don‘t see how you can do that, unless you‘re committed to
    training.  Turning to business, any successful
    business values its employees, and trains them well and provides them with
    continuing education.  I‘m not sure where
    the money‘s going in the NHS, but it certainly isn‘t going in that direction. 
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