It’s a small world, and the diabetes world especially can be even smaller than we think sometimes. Each day a new connection leads me to further connect with more amazing people doing amazing things for diabetes. Lucy Laycock visited India in 2011 to create a radio documentary about the DREAM Trust, a charitable trust that focuses on “making the life of diabetic, children especially female diabetics, more bearable and more meaningful.” Lucy is not a diabetic, but her experiences in India touched her so deeply that she is now part of a group that is working to form a registered charity called the Pendsey Trust.
Knowing that there are non-diabetics fighting for type 1s who are struggling around the world gives me hope that educating the general population can and will lead to drastic changes in areas like access to insulin, education, and supplies in the developing world. During our interview, Lucy explained why she cares so much about this cause, how it will help Type 1 diabetics in India (and hopefully in other parts of the world), and she shares lots of ways that you can get involved in this hugely important cause.
Can you tell me a little bit about your background and why you are interested in diabetes and the developing world?
Strangely enough, neither myself nor any of the trustees actually have diabetes! That doesn't mean we are any less passionate about the cause though. The way I first came to the situation was when, in my previous career as a journalist, I stumbled upon a conference at the European Development Days in Brussels run by various parties including the International Diabetes Federation (IDF) and the Non-communicable disease Alliance; ‘the white elephant in the room'. Even though all the conferences I went to over those few days concerned developmental situations, I was blown away by the situation for those with non-communicable diseases in the developing world. I already knew a bit about diabetes as several family members have the condition, so I applied to One World Media to travel to India and make a radio documentary about the situation. I actually found out about Dr Pendsey and the DREAM Trust through a bit of googling, but going out there really changed my life. I was left torn between horror at the lack of international awareness of the situation such individuals face, and inspiration at their courage and perseverance, and Dr Pendsey's dream of a better future for them all.
How did your experiences in India lead to the formation of the Pendsey Trust? How does it help type 1 diabetics in India?
Journalists are supposed to stay objective from their work, but something about the situation I saw at the DREAM Trust stayed with me long after I returned to the UK and finished producing my documentary. This started with my family sponsoring the medical costs of an eight year old girl I met out there, and my grandmother sponsoring another girl to train as a nursing assistant. But I wanted to do more; like Dr Pendsey, I knew that I "must do something".
An element of the work of the DREAM Trust which particularly inspired me was the focus on sustainable aid. Dr Pendsey believes that by giving a child an education, or teaching an individual with diabetes the skills they need to enter a profession, these individuals will one day be able to support themselves, their condition, and overcome the stigma which society labels them with. I met a wonderful girl who had risen out from a low caste family to become a nurse, well respected in her community and supporting her own medical costs (her story is included in my documentary). I decided that this was the area I would be best placed to help and could support the work of existing charities by taking the pressure of education costs from them, as well as enabling new projects. As such, our main projects are:
Can you tell me a bit about the country you work in and the organization you partner with?
Wow. How to describe India in just a few words! There is one point in my documentary where I am just ad-libbing, and we are driving through a crazy jungle in what I could only describe as 'tiger territory'. India is an incredibly beautiful and diverse country, with such contrasts- from the beautiful countryside to the vast sprawling megacities. It is also a country of contrasts in that it is magnificently entrepreneurial yet still tragically blighted by so many living in abject poverty. If you haven't been, go. Everyone must go once in their life.
The DREAM Trust was established around 12 years ago by Dr Pendsey, an internationally renowned endocrinologist who at the time ran a private clinic in Nagpur, India's city of oranges. He witnessed the deaths of two young girls with diabetes, both of whom were brought to the doorstep of his clinic on the verge of death. In one case, it was too late to save the child; in the second, after he delivered his diagnosis, the parents of the child took the decision to let her die as they could not afford the cost of her insulin as well as keeping their other children alive. The medical care for a child with diabetes costs around £14 a month, which is around two thirds of a poor family's income, and without a National Healthcare System sometimes the parents have to make tragic choices. Dr Pendsey realised that he must do something to help these children, and began treating them himself for free. Since then the DREAM Trust has blossomed, with greater international support, and has saved the lives of around 500 children with diabetes. The clinic is tiny, but every week children come from across India, sleeping on railway platforms overnight to travel miles to see Dr Pendsey. To many of them, he is a second father, and a lifeline of hope and determination that they will have a better life.
Will the Pendsey Trust give its proceeds to the Dream Trust, or will it work as a separate entity?
The DREAM Trust will be our first partner, although we hope to take Dr Pendsey's dream of a brighter future for those with diabetes in resource poor settings to other countries in the future. We will work closely with The DREAM Trust to identify opportunities which are appropriate for us to fund- but will ultimately allow the DREAM Trust to implement these as we are not big enough to have staff on the ground.
What does it take to set up a project/initiative like this?
Blood, sweat and tears! In all seriousness, charity law is complicated in the UK, to say the least. Often it is easiest to help existing charities rather than establish a new initiative. We were lucky- I had already found a distinctive cause and had a local partner to work with, as well as a good contact base from making my documentary and some very enthusiastic/supportive friends and family. The Small Charities Coalition gave us a lot of support and a mentor to get the ball rolling. However, a new charity must prove they can earn £5000 in their first year to register as a charity, and a lot of people are very cynical of unregistered charities. If anyone wants to know how to set up a small charity, I would recommend visiting the Small Charities Coalition website to get things started.
What kind of progress have you seen (and do you hope to see in the future) for type 1 diabetics in the developing world who do not have access to insulin, supplies, or education?
This is a really tricky question because progress is painstakingly slow and it still seems as though the international media haven't woken up to the situation for Type 1 diabetics in the developing world. Sadly, illnesses like Malaria and AIDS tend to steal the spotlight. One really exciting initiative I have seen recently is the 100 Campaign, which wants to see insulin available to everyone, everywhere, by 2022- the 100 year anniversary of the discovery of insulin. It is an ambitious dream, but a powerful one. Insulin was never really patented, unlike many other drugs, so why in 2012, when those with diabetes in the developed world live long and powerful lives, should those in resource poor settings still die for want of insulin? I'm 100% behind those running the campaign (including David Beran, who I met whilst making my documentary) and hope that through uniting on projects like this, the media will eventually feel the pressure and the story will be heard.
What do you think is the most important struggle type 1 diabetics in the developing world, and specifically in India, that we need to be aware of?
Beyond the obvious one of being able to afford insulin in the first place, this is a complex one. To give you some examples- insulin needs to be stored at fridge temperature. Many of the kids in India don't own a fridge, never mind have electricity in their villages. To make things worse, many of those I met live hours from a main city, and each time they have to travel to collect insulin, they must miss at least two days of work- or their parents must, if they are under age 18. Stigma is also a huge issue; girls with diabetes are not considered fit for marriage, a huge shame upon their family in India, and as a consequence many either hide their condition from their husbands, are abandoned, or are actually concealed away within their homes by their families altogether. The problems really are never-ending but there is hope, and establishments like the DREAM Trust are constantly working on innovative ways to overcome these problems.
How can people help/get involved in this initiative or make a difference to this cause?
There are so many ways in which people can help- and not all of them involve money!
1) Of course fundraising is a large part of what we hope to do- whether it be a sponsored event, doing something crazy (I’m trying to psyche myself up for a skydive!) or simply a donation. We have loads of resources to help you, including an ideas pack and sponsorship forms.
Any money goes such a long way and as a small charity we have virtually no costs. To give you an idea of where your money might go- £40 sends a child to school for a year, whilst £60 pays for a girl to train as a nursing assistant.
2) If you want to make a longer, more serious commitment, around £200 a year pays the medical costs for a child with diabetes. You will receive photos of the child, be able to write and send gifts (if you want!) and even visit them in India. My family sponsor a 9 year old girl, Nandhini, who I met whilst in India. Sponsorship of a child is a lifeline for their family, who will feel reassured that their child will receive the medical care they need.
3) Become a Pendsey ambassador! We desperately need people who like to talk, tweet, blog and network to spread the word about the situation for kids with Type 1 diabetes in the developing world, and the work of the Pendsey Trust. This includes people who are members of groups who may like to have a talk from us, or conversely, people who would happily research such groups or speak on our behalf.
4) Any other help that people can offer- whether it be corporate sponsorship, raffle prizes, ideas/skills sharing, or simply wanting to find out more about what we do! In any case I would ask anyone who is interested or wants to know more to contact us (firstname.lastname@example.org). We are a friendly bunch and always excited to hear from people!
In what ways do you think we can get the global community to be aware and involved in the struggles of type 1 diabetics in the developing world?
It is all about collaboration. By creating a united front with initiatives like the 100 Campaign, T1International and of course the Pendsey Trust, we can get people to listen and learn, and tell others! A lot of the problem comes down to lack of awareness- everyone I have told about the situation has been really surprised and horrified. Together we can do this – and the more voices, the merrier, whether it is tweeting, 'like'ing or simply telling people...it is a smaller world than you think, and we can change it.
Thanks so much to Lucy for informing readers about her experiences and the Pendsey Trust. You can follow @PendseyTrust on Twitter.