Diabetes is a massive global health
problem. Worldwide, incidence of diabetes is on the rise and India has
sometimes been called "The Diabetes Capital" being home to over 50
million people with diabetes, with this number rapidly growing. This increase
is usually referring to type 2 diabetes, which tends to start later on in life
and at least initially can be managed with diet and then certain tablets.
However, type 1 diabetes is also on the
increase worldwide. This is the type that starts in childhood and happens
because the cells in the pancreas that produce insulin - a hormone vital for
keeping a check on the sugar levels in your body - are destroyed, for reasons
not completely understood. That means that it is treated with replacing insulin
through injecting it every day.
As I was working in the Paediatric
department in the Delhi hospital, and being generally interested in
Paediatrics, this was the type of diabetes I was going to have a look at. After
speaking to some Paediatricians in the UK, I decided to try and collect some
data whilst I was here about the children here with diabetes, how they treat
it, and whether this results in good control of the condition. I could then
compare it to children within the UK and see if there are any differences and
any useful conclusions that could be drawn from this.
This proved a lot more difficult than I
initially imagined! Due to how the health system works here, patients don't
always go to the same hospital every time, as it partly depends on what they
can afford at the time. When they need blood tests or imaging done, they often
go to a private service where they pay to have them done, and then take those
test results to a doctor to get them interpreted. As a result, patients carry
around a lot of their details and notes from hospital to hospital - so whilst
the hospital retains some records of some of the admissions, it doesn't have
records of all the information. For some of the information then, we needed to
actually speak to the patients. This was fine for those who had been admitted
recently, or who had come in to see the consultant recently (there are not
usually formal follow up regimens, they ring up and come in if there are any
problem) as there was an up to date phone number. However, over half of the
phone numbers recorded in the notes were out of service or the wrong number
entirely!
In the UK we are used to many more
computerised systems which make looking through previous test results very
straightforward, and you can even do fancy things like get up graphs showing
how different levels had changed over time and so on. Sometimes here, a test
result we were looking at wouldn't have been written anywhere, or it might
have, but the notes just said that the result was "high", rather than
recording the value it had been.
There were other differences in the
recording of patient details as well. In the UK there are lots of patient
identifiers used, which is really helpful if you can't find a patient - for
example, if there are two patients with the same date of birth, you can
differentiate them by surname, or by NHS number. Here, paediatric patients were
usually recorded with just their first name and a hospital number, but surname
and date of birth weren't recorded, so working out their age was also tricky!
It was interesting to see how notes were
recorded differently here, and actually patients carrying around their own
notes can be a really useful thing. I have often thought that might be handy
when a patient turns up in A&E who is on holiday in London, so we have none
of their previous notes and no good way of getting them!
Despite encountering these problems, I did
manage to get a bit of data about these children collected. One of the more
interesting things though was being able to speak to some of them and their
parents, and see how being diagnosed with a long term condition such as
diabetes at such a young age had had an impact on them and their family.
More so than I had come across in the UK,
quite a lot of families talked about the condition in the context of their
religion, with comments such as "God made her strong so that she could
deal with this" and "He is coping so well with it, that in future
lives he will be rewarded". The other thing that struck me was an amazing
belief in science that a cure would be found. More than half of the families
that I spoke to brought up the possibility of a cure, and many were sure that
within the next few years, some sort of cure would be developed. Whilst there
is a lot of work being done in this area, and steps forward are being made, I
wish I could have that certainty that we will be able to cure it so soon! It
would certainly be a great thing for these kids! Seeing how people from a
different culture deal with a disease that I am very familiar with was really
interesting, and it will be fascinating to compare it to the responses of
families in the UK when I am back.
The one thing that I have noticed
consistently, both within the UK and India, is that the children with diabetes
deal so well with it. Perhaps being diagnosed at such a young age, they get so
used to it that they almost don't remember anything else. The parents I spoke
to here consistently said things like "If someone gives her sweets at
school she will give them to her sister as she knows she shouldn't have
them" and one eleven year old child had even said to her parents
"Mum, stop worrying! This is my body and my disease and I can deal with
it." Children really are amazing and so often have so much to teach those
of us who are older.
I am not sure yet whether I am going to be
able to use all of the data I have collected, but either way, it has been a
really interesting process. I met some amazing families and inspiring kids, and
got a real insight into living with diabetes - both as a child with the
condition and also as a parent to that child.
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