Diabetes UK Speech
Firstly, many thanks to Diabetes UK for inviting me to speak to you all
today about my experience of receiving different standards of diabetes
care in different areas.
Secondly, please forgive me for rushing off after the speeches, I would
very much like to stay and chat with you all but I’ve promised my boss I
will head back to the office for our Board Meeting. Thankfully, it’s only 3
minutes from here…or perhaps 5 minutes in these high heels…
My diabetes story began in March 2009 when, at the age of 19, I was
diagnosed with Type 1 Diabetes. To say it was a shock would be a
major understatement – I was in my second year of Keele University,
relatively healthy (as much as a uni student can be!) and had no family
history of Type 1.
After feeling unwell for a number of weeks, I was diagnosed at the GP
practice on campus and advised to make my way to North Staffs
hospital.
Having been admitted overnight to a ward with numerous geriatric
patients, the care I received was mostly good – that said, I got rather
tearful in the middle of the night and the ward nurse reassured me by
saying “you’ll be OK, my dog’s got diabetes”. I was visited by the
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diabetes nurse the next day and she was the first person to inform me
with the basis about how to manage this new condition I was entirely
clueless about and gave me a telephone number to reach the Diabetes
Specialist Nurse team. I attended around 16 appointments with nurses,
dieticians, podiatrists, consultants in the next 6 weeks and fortunately
most of these were in the shiny new Primary Care Centre in Stoke on
Trent.
I was rather perturbed at subsequent Diabetes Nurse appointments
when the nurse’s first question would be “Are you planning to get
pregnant?” – I would feel the need to respond “It would be helpful if I got
a boyfriend first!”.
After graduating in 2010, I briefly returned home to Sussex and
registered as a patient there but in September I started on the John
Lewis graduate scheme and made the mistake of registering with a GP
practice in High Wycombe so incompetent that for my first appointment
at 8am on a Saturday I was stood outside with the locum doctor and half
a dozen other patients because no one had bothered to open the
surgery. I went back for another appointment and was referred to the
“Diabetes Nurse Clinic” the other side of town.
I took the morning off work and attended the clinic, when I saw the nurse
and after taking one look at me, she said “I only know how to treat Type
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2 diabetes, I don’t know anything about Type 1”. Tears of frustration
ensued, I walked out vowing to find another practice (which she said she
didn’t blame me for!) and called my cousin who is a nurse and began an
expletive-ridden tearful rant. I then paused and said “You’re in the car
with the kids and I’m on speakerphone, aren’t I?”.
The incident prompted me to make a formal complaint to the PCT. I
consider myself a well-educated, empowered person – I dread to think
what the outcome for someone less fortunate than I.
I found another, incredibly helpful surgery and 6 months later moved to
Milton Keynes and once again registered with another surgery (we’re
now onto five GP surgeries in one year, are you keeping up?).
The one thing that not one of these CCGs – North Staffordshire,
Horsham, Milton Keynes, Buckinghamshire – were able to offer was a
structured education course.
Ask any well-controlled diabetic – by this I mean in medical terms a
patient with an HbA1c of under 7 and in very cynical terms, I mean the
patients who are least likely to have diabetes complications and thereby
not pose a cost the NHS with amputations and kidney disease – what is
key to good control and they will tell you knowledge is power. Structured
education courses are key in allowing patients to manage their condition.
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DAFNE- Dose Adjustment for Normal Eating – and other courses
empower patients to make informed decisions about how to adjust their
medication.
In an APPG here last year one of the Consultants said that he didn’t
know any other condition which required a patient to make such crucial,
and potentially fatal, decisions on a daily basis. When calculating the
hours spent with medical professionals on an annual basis and time
spent on self-management – one greatly outweighs the other.
So, when I finally moved to London in 2012 and registered with a GP in
Clapham and came under the care of St Thomas’ hospital – I was
delighted to enrol into a DAFNE course and learn more about the
condition in one week than I had in the previous 3 years.
What I want to make clear is making funding available for patients to
attend education courses in every region may seem like a large shortterm investment, but ultimately the long-term savings for the NHS will
hugely benefit. Governments may only strategise for the 5 year term of
their Parliament, but diabetes simply isn’t a problem that is going to go
away. Through no fault of my own, I cost the NHS thousands of pounds
a year, I will continue to do so until the day that I die.
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I have seen the good, the bad and the ugly in my experiences with the
NHS, it truly is a postcode lottery in terms of care. We should be
realising that although the scale of the challenge is huge, we need to
face it sooner or later.
That’s why I think the Government, the NHS, local commissioners and
providers need to urgently act to make sure that all people living with
diabetes are supported and empowered to manage their condition.
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