Soaraway Shoot Up: To begin with, what is the Pendsey Trust?
Lucy Laycock: The Pendsey Trust is a small charity established by a group of friends, aiming to provide access to educational opportunities for those with Type 1 diabetes in developing countries, and to raise awareness of the difficulties facing such individuals.
SSU: Why did you and your friends start the Trust?
LL: I used to be a journalist and specialised in uncovering unheard stories from the developing world. In 2011, I was lucky enough to receive funding from One World Media to make a radio documentary (‘The Doctor who Dreamed‘) about the situation for those with Type 1 diabetes in India.
My cousin and grandfather are diabetic, and I was really staggered by the fact that those living in poverty with the condition often simply die, or face terrible health complications because there is no NHS and they cannot afford the cost of insulin (around £14 a month- two thirds of a poor family’s income!).
There is almost no international aid or awareness of the situation, unlike for other illnesses such as AIDS or Malaria. I travelled to stay with Dr Pendsey, an Indian endocrinologist who established the DREAM Trust around twelve years ago after witnessing the deaths of several children whose families simply could not afford the medication they needed to stay alive.
Since, he has saved the lives of around 500 people with Type 1 diabetes, partly through international fundraising but largely through his own generosity and determination.
Of course, the situation for these individuals has even more layers of complication – because there is a lack of awareness and education about diabetes, the children I met face terrible stigma. Some are abandoned by their families and diabetic girls are written off in terms of marriage.
Like Dr Pendsey, I realised that I must ‘do something’ to help those I met and others like them. After a lot of research, that ‘something’ is The Pendsey Trust.
SSU: The Trust aims to provide education for poorer diabetics, rather than just give them insulin? Why?
LL: There are some fabulous charities out there which are working to support the medical costs for such individuals (in particular I recommend checking out IDF’s ‘Life for a Child‘ programme) and The Pendsey Trust will also be offering the opportunity for individuals to sponsor children in this way.
However, primarily we hope to compliment the work of such charities through the provision of educational opportunities for individuals with Type 1 diabetes in the developing world. One of the things I most admired about Dr Pendsey’s work was his emphasis on sustainable aid. He understands that by giving an individual with diabetes access to education, they have the chance of one day securing a job which will enable them to support their condition, gain respect and even give money back to the DREAM Trust, thus preventing ‘aid dependency’.
Such educational opportunities can come in various forms – at most simple, providing access to schooling and transport to school for the children, but also solutions for older patients, such as purchasing sewing machines and providing these girls with the tuition they need to work as private tailors in their own homes whilst caring for their children.
Whilst at the DREAM Trust I met a girl named Manda who had trained as a nurse with the support of Dr Pendsey, and now supports her medical costs, gives money back to the Trust, and is a respected individual in her community, despite her condition. Her achievements really sum up what we hope to achieve with the Pendsey Trust.
SSU: What countries is the Trust focussing on? Why India?
LL: Our first partner will be the DREAM Trust, which is based in Nagpur in central India, due to my established link with him after making ‘The Doctor who Dreamed’. Dr Pendsey already attempts to provide educational opportunities for the individuals he helps; however our work will help with the financial burden of this, allow new programmes to be developed, and provide a model for future projects.
We hope to expand our reach as we grow and will be looking for further local partners in countries where insulin is not affordable for individuals with diabetes. Many of the kids Dr Pendsey works with are the lucky ones and there are so many more who could benefit from our work.
SSU: India is very much an up-and-coming nation, why do they need our help?
LL: This is a really interesting and challenging question from a developmental perspective and one which I get asked surprisingly often!
In 2012 it was revealed that India had tried to stop the UK sending further aid, as they claimed they did not need it any more. However, as anyone who has been to India will agree, although it is a proud and incredibly forward-thinking country, there remain a huge number of people living in absolute poverty.
I believe that aid should not be bound by borders, and would want to help any child unable to access insulin for financial reasons, regardless of where they are from. There is also the misconception that rich Indians do not do enough to help their own country; however certainly in the case of the children at the DREAM Trust, much of the funding for the children’s medical care has come from Indians.
And in regards to politicians claims that they no longer require aid – I challenge them to look in the eyes of the parents of a child dying from diabetes because they simply cannot afford their medical care.
SSU: It’s perhaps a sadly obvious question, but what happens to people who can’t afford insulin? Is there any form of social health safety net?
LL: Sadly, in many developing countries, there is simply no ‘back up’ for those who develop diabetes but cannot afford insulin. In some cases parents even proactively take the decision to allow the diagnosed child to die, as paying for their medical care will mean that their other children will go without food and education- as Dr Pendsey witnessed in the case of the death of a young girl who inspired the foundation of the DREAM Trust.
Even when families make the decision to fund the child’s medical costs, frequently they can’t afford a steady supply of insulin, and as a consequence the individuals suffer painful side effects such as stunted growth, amputations, and are more likely to slip into diabetic comas.
The situation is really complex- for example, many private clinics will only release a few weeks supply of insulin at a time, and the journey from the countryside to collect it can be long and expensive for families, requiring one parent to miss one or two days of work and therefore pay. These are all issues which anyone trying to help people with diabetes in the developing world have to face.
SSU: In developing countries there can be a stigma about diabetes. What plans are there to educate non-diabetics?
LL: This is true – I saw widespread discrimination against those I met at the DREAM Trust. A few examples include a girl who was abandoned at an orphanage by her parents when they discovered her condition, children being forced to eat from separate bowls and cutlery, and widespread bullying in school.
I also agree that educating others about diabetes removes the fear factor and is the way that individuals like those I met in India will overcome the stigma they face. However, without any plans or funding for wide scale education in the developing world, a lot of the momentum for this is going to have to come from those with diabetes themselves. I believe that by providing these individuals with a strong education and enabling them to achieve their potential, they will earn respect in society and thus be in a strong position to educate others about diabetes.
Manda, the young girl who trained as a nurse whom I mentioned above, is a prime example of this. As a respected member of society she is now in a strong position to influence others opinions about diabetics. I hope even for the younger patients who we help, being able to look to those who have achieved feats like Manda, a real-life ‘dream girl’, and the knowledge that they have the chance to do similar, will help them fight the stigma they face.
SSU: How big a problem is this?
LL: The concerning thing is that due to the lack of international interest or funding, the numbers affected by the situation really are unknown. The IDF estimate that there are 80,000-100,000 are in need of urgent help- but the number could be much higher.
It is assessed that every year many die undiagnosed, with their deaths attributed to other illnesses, such as cholera. However, based on the work of the International Insulin Foundation, it is estimated that as a world average, 98% of children diagnosed with Type 1 diabetes survive more than 6 years- however in sub-Saharan Africa only 1% do.
SSU: How can we help?
LL: 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 this 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 firstname.lastname@example.org – we are a friendly bunch and always excited to hear from people!
Thanks for speaking to us Lucy and watch this space for details about how your very own soaraway Shoot Up plans to help the Pendsey Trust. Our plan involves bicycles, shaving legs and dressing up like Roman Centurions. [update – you can read all about our efforts here: https://www.shootuporputup.co.uk/charity/]