Trying something new with this blog post. Today, I'm posting an interview with Lucy, founder of the charity The Pendsey Trust. Never heard of it?! I hadn't either until a few weeks ago, but I feel I should have as the work they do is inspiring!
Vicki: Can you tell me a bit about yourself and your connection to diabetes?
Lucy: Hey! I'm Lucy - I'm pretty much your typical 24 year old. I work full time and have a pretty hectic social life; I love exploring all the amazing restaurants and bars in London as well as running and generally being active. I just happen to run a charity in my spare time.
If you had asked me about my connection to diabetes a few years ago, my answer would have been remarkably little. My Grandfather had Type 2 diabetes and my cousin Charlotte was diagnosed with Type 1 when she was very young - so I had witnessed first hand the difficulties of living with diabetes in the UK and understood the basics of the condition. It is funny because a lot of people assume, because of what I do, I must have diabetes - which is actually not the case. This is a cause which pretty much found me!
V: What is The Pendsey Trust?
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Vicki: Can you tell me a bit about yourself and your connection to diabetes?Lucy: Hey! I'm Lucy - I'm pretty much your typical 24 year old. I work full time and have a pretty hectic social life; I love exploring all the amazing restaurants and bars in London as well as running and generally being active. I just happen to run a charity in my spare time.
If you had asked me about my connection to diabetes a few years ago, my answer would have been remarkably little. My Grandfather had Type 2 diabetes and my cousin Charlotte was diagnosed with Type 1 when she was very young - so I had witnessed first hand the difficulties of living with diabetes in the UK and understood the basics of the condition. It is funny because a lot of people assume, because of what I do, I must have diabetes - which is actually not the case. This is a cause which pretty much found me!
V: What is The Pendsey Trust?
L: The Pendsey Trust is a small charity which provides access to educational opportunities for young people in the developing world, so that one day they can enter employment which will fund the costs of living with the condition and enable them to look forward to a happy, sustainable future.
V: How did The Pendsey Trust start?
L: The Pendsey Trust started in 2010, when I was working as a journalist. I represented the UK with Young Reporters Against Poverty and attended a series of conferences about international development issues in Brussels. I stumbled across a tiny conference run by IDF about the situation for those with NCDs (Non Communicable Diseases) in the developing world and with my small knowledge of the condition was absolutely stunned at the terrible situation facing individuals with Type 1 in these countries.
I successfully applied for funding from One World Media to travel to India, where I stayed with Dr. Pendsey, a remarkable endocrinologist who witnessed cases of children from the slums being brought to him on the verge of death by their desperate parents. There is no NHS in India, and with insulin often costing two thirds of a family's monthly income, so many children die for lack of the lifesaving drug. Dr. Pendsey and his wife decided that they must help and established the DREAM Trust, which ten years on has helped provide free insulin for hundreds of children from poor Indian families.
When I returned to the UK I was so inspired by what I saw, and how terrible the situation was for those with Type 1 in the developing world, that I decided that I also must do something. Thus, after a lot of support from family and friends, The Pendsey Trust was born.
(The radio documentary I made and the accompanying blog is only at www.thedoctorwhodreamed.wordpress.com)
I successfully applied for funding from One World Media to travel to India, where I stayed with Dr. Pendsey, a remarkable endocrinologist who witnessed cases of children from the slums being brought to him on the verge of death by their desperate parents. There is no NHS in India, and with insulin often costing two thirds of a family's monthly income, so many children die for lack of the lifesaving drug. Dr. Pendsey and his wife decided that they must help and established the DREAM Trust, which ten years on has helped provide free insulin for hundreds of children from poor Indian families.
When I returned to the UK I was so inspired by what I saw, and how terrible the situation was for those with Type 1 in the developing world, that I decided that I also must do something. Thus, after a lot of support from family and friends, The Pendsey Trust was born.
(The radio documentary I made and the accompanying blog is only at www.thedoctorwhodreamed.wordpress.com)
V: What countries does the Trust focus on?
L: We currently assist children and young people at Dr. Pendsey's clinic in India but as we are growing rapidly are hoping to take on more countries and help take Dr. Pendsey's vision to others with diabetes across the globe.
V: What are the main struggles for people with diabetes in the developing world?
L: This is a really interesting question. I have volunteered a lot in the developing world and the situation I saw for the young people was so much worse than anything else I had encountered. I would split my answer into several parts:
- Cost: As I mentioned before, the monthly cost of insulin and medical care for children with Type 1 is £14, which is around two thirds of a poor family in India's monthly income. In many cases, parents simply have to take the decision to let the child die, or in some cases the child's insulin comes at the cost of the education of all the children in the family. Where families try to provide insulin, often they cannot provide a consistent supply so the child suffers ketoacidosis (diabetic coma), stunted growth and other complications.
- Stigma: I was horrified by the level of stigma surrounding those with Type 1 - largely due to a lack of understanding. I met children who had been forced to eat from different plates to other children as people believed diabetes was contagious, and for children who had to inject themselves at school, they were outcast and bullied.
- Women: Being a woman with Type 1 in India is a curse. Women with Type 1 are not considered to be suitable marriage partners and therefore are thought to be worthless. Many hide their condition from their partners, and others are abandoned when their diabetes is discovered. They are considered to be a shame upon their families.
- Access: Even when insulin is available, there are issues of access. In many cases only a few weeks supply is available at a time and the parent of a child must give up at least a day of work and the cost of travelling to the nearest city to a hospital to pick up the insulin on a regular basis. Most rural villages do not have electricity and in the baking Indian sun, storing the insulin is almost impossible.
All of these issues have fallen below the radar of international development media, unlike with conditions like AIDS and Malaria which have received widespread global attention.
V: What are the main struggles for people with diabetes in the developing world?
L: This is a really interesting question. I have volunteered a lot in the developing world and the situation I saw for the young people was so much worse than anything else I had encountered. I would split my answer into several parts:
- Cost: As I mentioned before, the monthly cost of insulin and medical care for children with Type 1 is £14, which is around two thirds of a poor family in India's monthly income. In many cases, parents simply have to take the decision to let the child die, or in some cases the child's insulin comes at the cost of the education of all the children in the family. Where families try to provide insulin, often they cannot provide a consistent supply so the child suffers ketoacidosis (diabetic coma), stunted growth and other complications.
- Stigma: I was horrified by the level of stigma surrounding those with Type 1 - largely due to a lack of understanding. I met children who had been forced to eat from different plates to other children as people believed diabetes was contagious, and for children who had to inject themselves at school, they were outcast and bullied.
- Women: Being a woman with Type 1 in India is a curse. Women with Type 1 are not considered to be suitable marriage partners and therefore are thought to be worthless. Many hide their condition from their partners, and others are abandoned when their diabetes is discovered. They are considered to be a shame upon their families.
- Access: Even when insulin is available, there are issues of access. In many cases only a few weeks supply is available at a time and the parent of a child must give up at least a day of work and the cost of travelling to the nearest city to a hospital to pick up the insulin on a regular basis. Most rural villages do not have electricity and in the baking Indian sun, storing the insulin is almost impossible.
All of these issues have fallen below the radar of international development media, unlike with conditions like AIDS and Malaria which have received widespread global attention.
V: The charity also aims to provide access to education. Why?
L: One of the things that most inspires me about Dr. Pendsey's work is that he had endeavoured to send as many of the children as possible to school, or suggest vocational courses for the young adults to attend. Just £40 sends a child to school for a year, or £60 pays for a sewing machine to enable a young woman to start a tailoring business. These are tiny amounts of money to us, but literally change lives as by entering a well paid job, those with diabetes are able to break free of the cycle of poverty and transform their lives. I met an inspirational young woman, Manda, who had become a nurse with Dr. Pendsey's assistance and was now funding her own medication, assisting her elderly parents, earning more than her husband and destroying the stigma around condition as she was considered a 'dream girl' by others in her society. She was also giving money back to help others at the clinic with diabetes.
My dream was that The Pendsey Trust would be able to help individual break free of the situation facing them through education, and to take Dr. Pendsey's image that education is they key to a sustainable future to others both in India and globally.
V: What does it take to set up a charity such as this?
L: It was a long and complicated process but we were lucky to have the support in the form of a mentor from the Small Charities Coalition, who had a meeting with us and talked through the basics. Then it was a case of thinking carefully about what we hoped to achieve, writing a constitution, choosing trustees, and getting a bank account. And a long wait for our HMRC small charity number.
It has been fantastic so far though and I cannot believe how we have grown. We aimed to earn £5,000 in our first year - we have raised over £7,000 and are applying to become a fully registered charity, and have had great fun hosting events from quiz nights to hog roasts. We have also developed a supporter base and were proud to be chosen as one of Newcastle University's charities for their RAG week in January 2014.
Of course, most importantly, is how far all the money raised has gone. That is a lot of £40s! Most recently, we paid for five young people to attend a vocational training college for six months, after which they will graduate and be able to gain employment in their chosen careers - changing their lives forever.
V: How can others get involved with The Pendsey Trust?
L: As a tiny charity, we need all the help we can get! Whether this is by organising fundraising events for us (£40 sends a child to school for a year!), commiting to a monthly donation, writing blogs/tweeting about us or attending our events. We always love to hear from new people and need all the ideas we can get as we are a young and friendly bunch and still learning. You can email us at admin[at]thependseytrust[dot]org or tweet us @pendseytrust.
My dream was that The Pendsey Trust would be able to help individual break free of the situation facing them through education, and to take Dr. Pendsey's image that education is they key to a sustainable future to others both in India and globally.
V: What does it take to set up a charity such as this?
L: It was a long and complicated process but we were lucky to have the support in the form of a mentor from the Small Charities Coalition, who had a meeting with us and talked through the basics. Then it was a case of thinking carefully about what we hoped to achieve, writing a constitution, choosing trustees, and getting a bank account. And a long wait for our HMRC small charity number.
It has been fantastic so far though and I cannot believe how we have grown. We aimed to earn £5,000 in our first year - we have raised over £7,000 and are applying to become a fully registered charity, and have had great fun hosting events from quiz nights to hog roasts. We have also developed a supporter base and were proud to be chosen as one of Newcastle University's charities for their RAG week in January 2014.
Of course, most importantly, is how far all the money raised has gone. That is a lot of £40s! Most recently, we paid for five young people to attend a vocational training college for six months, after which they will graduate and be able to gain employment in their chosen careers - changing their lives forever.
V: How can others get involved with The Pendsey Trust?
L: As a tiny charity, we need all the help we can get! Whether this is by organising fundraising events for us (£40 sends a child to school for a year!), commiting to a monthly donation, writing blogs/tweeting about us or attending our events. We always love to hear from new people and need all the ideas we can get as we are a young and friendly bunch and still learning. You can email us at admin[at]thependseytrust[dot]org or tweet us @pendseytrust.
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To find out more:
Website: www.thependseytrust.org
Email: admin[at]thependseytrust[dot]org
Lucy's documentary: www.thedoctorwhodreamed.wordpress.com
DREAM Trust website: www.dreamtrust.org
And, finally, a huge thank you to Lucy for agreeing to do an interview. I absolutely love the work that you do and look forward to hopefully doing something to raise some money for the charity.
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