Thursday, 13 February 2014

Emma's Experience of Diabetes in India



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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