Sunrise Foundation Diabetes Project

A few of you will have come across a FaceBook post in the Diabetes in Ireland Private Group from Debbie Davis who helps the Sunrise Foundation collect up unused and unneeded diabetes supplies such as old redundant glucose meters and test strips which are then send to underprivileged families with diabetes in Africa. I wanted to find out a little more about the Sunrise Foundation and the work that they do, so Debbie very kindly put me in touch with Matilda Chongwa the CEO. Matilda has written this week’s blog post about her foundation.

SUNRISE FOUNDATION INTERNATIONAL IRELAND.

What is the Sunrise Foundation?

My name is Matilda Chongwa. I am the CEO of Sunrise Foundation. 31 years ago, my mum was diagnosed with diabetes in Cameroon in a little village called Bali Nyonga in the North West Region of Cameroon. My siblings and I were all very young and did not know what diabetes was all about and the only thing we were told by my dad was that my mum was going to die because she was suffering from a sickness that she has to be on medication throughout her life. She was very ill and helpless in the hospital. She lost a lot of weight and she spent a whole year in the hospital. When she came out of the hospital she was always on medication and even now her life is all centred around medication and insulin.

With this in my mind, I was always thinking of ways to help my mum and others in the same situation. My mum was the first to be diagnosed with diabetes in the family and some of my aunties and uncles who were diagnosed after my mum died because they could not afford medication. Diabetes medication in Cameroon is very expensive and a lot of people cannot afford and they died on regular basis.

THE WORK OF THE SUNRISE FOUNDATION

When I came to Ireland I thought it was the right time for me to create awareness and support people with diabetes in Ireland and most especially in Africa where a lot of them are dying. The worse is that parent who cannot afford medication turn to invest on their health with the little they have and the children cannot afford education. Most children from families with diabetes cannot afford education so one of the things we do at Sunrise Foundation is education sponsorship for children from extremely poor families with diabetes in Africa.

What we have achieved so far:

• We have successfully organised so many diabetes awareness events in Ireland. Where we get Irish medical doctors to talk about diabetes
• We donated €1,000 to Diabetes Ireland.
• We donated €400 to Diabetes Mater private.
• We have also celebrated World Diabetes Day in Ireland with a Fashion show {Fashion Against Diabetes}
• We have taken Irish Diabetes Consultants, doctors, and Sunrise volunteers to Africa for free screening and awareness on Diabetes and High Blood Pressure
• We have been featured on TV and newspapers in Ireland and Africa because of our work with the Sunrise Foundation.
• We have won 4 recognition awards from creating health awareness in Ireland and Africa.
• The CEO/Founder Matilda Chongwa was recognised last year in Germany As an African Living Legend for Diaspora Engagement International, through the African Living Legend Awards. All thanks to Sunrise Foundation Diabetes project.

NEXT TRIP TO AFRICA

Our Next trip to Africa is in November and that is why Debbie Davies is collecting, medication, insulin, test trips and glucometers. I met Debbie Davies in 2015 with her daughter Caitlin Davis who had type 1 diabetes. She used to come to Diabetes awareness events organised by Sunrise Foundation and shared her life story about living with type 1 Diabetes and unfortunately, she died last year. She is greatly missed by The Sunrise Foundation Team and those she motivated with her stories and advice on how to live with Diabetes.

After her death, her lovely mother Debbie Davis decided to keep the relationship with Sunrise Foundation by organising collection of diabetes medication for Sunrise Foundation Diabetes project in Africa. We were in Nigeria in May for 12 days and all the collection were donated to St Mary's Hospital in Isolo, Nigeria. This donation was done in the presence of Dr Richard Firth who is a Diabetes Consultant in Mater Private who was the head doctor with us in Nigeria.

If you have items to donate to our next trip to Africa please contact Debbie via email davdebbie@gmail.com or Phone 085 2880489.

UPCOMING EVENT ORGANISED BY SUNRISE FOUNDATION VOLUNTEERS

We are organising the World Diabetes Fashion Show on the 4th of November at the Hilton hotel, Dublin Airport on the Malahide road.

This event is organised by the Sunrise Foundation in partnership with the Diabetes Centre Mater Private Hospital. We would like to invite you all to come and share the day with other people with diabetes who will be sharing their stories and celebrating the World Diabetes Day. We are also looking for volunteers to travel with the team or who want to share their life story to help others.

Sunrise Foundation Contact Details:

• Matilda Chongwa
• Phone: 083 1644110
• Email: info@sunrisefoundation.ie
• Sunrise Foundation International Ireland Facebook Page
• Website http://sunrisefoundation.ie/
• Instagram is sunrise_foundation
• Supplies and Medical donations to: Debbie Davis davdebbie@gmail.com or 0752880489

A Diabetes Mother's Call

You might remember a while back that I posted about being part of a Diabetes Ireland delegation to attend a diabetes briefing for TD’s and Senators in Leinster House. My friends, Rebecca and Davina both gave powerful and emotional speeches to our audience about life with type 1 diabetes. I asked Rebecca if I could shared hers on Thriveabetes and she was game. Rebecca is also one of my partners in crime in organising Thriveabetes :-) Here are her words;

My name is Rebecca Flanagan, I live in Co. Clare and I have 3 daughters, the eldest of which has Type 1 Diabetes. She was diagnosed just before her 8th birthday and, at 16 years old now, has lived with this auto-immune condition for 8 years – a condition she will have for the rest of her life. This was the start of our whole family’s ‘new’ normal. This new normal for my daughter now involves a minimum of 4 finger prick blood sugar tests and a minimum of 4 insulin injections every day in order to stay alive. EVERY DAY!

Part of the new normal for our family was figuring out the insulin dose based on the amount of carbohydrates she would be eating, but it’s not a perfect science and so many variables can contribute to her care. Additional testing may be required for stressful times, like the students taking exams right now; anxiety, exercise, sickness. As parents we became our child’s nurse and doctor, hoping we had been given the proper training to keep our child healthy.

Time off work must be organized to attend hospital appointments, schools must be cooperative, and her siblings sometimes have to take a back seat. Middle of the night blood sugar tests often have to be done. There are times that the whole family becomes exhausted and burnt out.

But I know I’m not alone in this life with type 1 diabetes. There are about 3,000 families in Ireland trying to manage this balancing act with a type 1 child in Ireland. Some children are only babies at diagnosis – imagine trying to count the carbohydrates and a correct insulin dose for an infant, when it’s hard to tell how much even makes it past their mouth. Imagine trying to get a toddler to finish their dinner because they already had their insulin, and if they don’t they are in danger of having a hypo (or a low blood sugar, the consequences of which can lead to a coma or even death). Imagine having to come in to your child’s school every day at lunch, as I did, to administer their insulin injection because the school has no resources to support this. And then imagine hoping that they finished all of their lunch and maybe not run around TOO much at break, for fear of a hypo.

Now imagine the teenage years when they just don’t want to deal with it anymore – when they long to be like normal teenagers and not worry about testing all the time and taking insulin before having a quick ice cream with friends. Imagine their worries and fears for the future – my teenager shouldn’t have to worry about whether or not her life expectancy will be shortened, or complications like blindness or liver failure, or how difficult it might be to have a healthy pregnancy in the future.

These are all realities for families with type 1 children. Parents worry whether they are doing it all right whilst dealing with the public perception amongst those who just DON’T KNOW the difference between type 1 and type 2 diabetes. We are constantly defending and educating, constantly worrying. Worrying about complications, worrying about negative relationships with food (eating means testing means injecting), worrying about things like diabulimia – when teenagers stop taking their insulin in order to lose weight. There’s just so much worry.

There’s only so much that we, as parents, can do. We need the support of well trained and well-staffed clinical teams. Every family, regardless of location, should have quarterly hospital appointments with a paediatric endocrinologist, nurse specialist, dietician and psychological support service. Some children, my daughter included, are currently attending clinics with NO endocrinologist. Transitional clinics for teenagers which include psychological support are majorly needed.

The research has been completed. The Model of Care for all Children and Young People with Type 1 Diabetes was published in December 2015. It is time to get the funding in place to secure the basic medical staff requirements and get this system on track. The technologies available for the treatment of type 1 diabetes should also be available to all children – my daughter has lived with type 1 diabetes for 8 years and we are no closer to obtaining an insulin pump for her - they should be available to any family willing to put the work in.

Adequate staff and patient training now will reduce the long term impact on the health service by minimizing the potential for complications in adulthood. My daughter and all the other type 1 children will be using the health service for life, and we need up front support now so that they do not become a statistic of complications such as blindness and amputations.

I am asking for all the TDs in attendance today to please push for the Model of Care staff requirements to be filled and work towards all of the recommendations made in this document. The strategy is in place but the funding needs to follow NOW. Please support our families and push for funding to be utilised effectively. Our children did nothing to deserve this illness but they deserve adequate treatment and care from the health service on a nationwide level.

Thank you Rebecca for sharing your speech. And thanks to both Davina & Rebecca for explaining, so well, what living with type 1 diabetes is really like.

Our first request from our TD's was that 0.4% (€5m) of the health service's annual spend on diabetes (€1.3 billion this year) be re-directed towards funding the paediatric diabetes strategy, so that huge financial savings from preventing diabetes related complications would be accrued in future years.

But then! We asked for a multi-year health strategy with cross-party agreement for adults with diabetes. The National Programme for Diabetes Team have come up with this strategy but the need government to approve the funding to deliver this plan!

Diabetes is costing the government €1.3 billion this year and over €800 million of that will be spent on dealing with the complications of diabetes. We can reduce the amount spent on complications each year by directing the financial savings that the HSE has made, in the recent years by working with the diabetes community, in reducing the cost of diabetes medications and devices. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes.

So what's next? Well, we can try to use every opportunity to remind our TD's why we need this. We need it because those of us who do not have diabetic complications want to stay that way for as long as possible. We need support from our medical teams to maintain that journey. Those of us who already have complications need the support of a complete medical team to minimise the damage of those complications.

Meeting our Public Representatives

On Wednesday 22nd June 2016 Diabetes Ireland, People with Diabetes and our National Clinical Leads in Diabetes Strategy briefed TD’s and Senators on the need for extra resources to improve the diabetes service for the 225,000 people living with the condition in Ireland today.  

How did it come about?

This event took place because Davina Lyon a person living with type 1 diabetes from Co. Kildare emailed her local TD’s about lack of services in both Naas and Tallaght Hospitals. And prompted by a call to action from Diabetes Ireland.

Frank O’Rourke, TD for Kildare North responded to Davina’s email and organised for us to have a room in Leinster House to make a presentation to our nation's TD’s and Senators.and invited all of his colleagues to attend.

I was so honoured that Davina, who is a friend through the Diabetes Online Community in Ireland, asked me to be a part of it. Both of us are members of Diabetes Ireland and asked for their advice and guidance on how to prepare for the briefing, which they did in huge quantities. Diabetes Ireland also put in a lot of their own stretched resources into their own preparation for the presentation with press releases and take away printouts for our attendees.

Our delegation grew to include;

Oireachtas Members;

•  Frank O’Rourke, TD for Kildare North
•  Mary Butler, TD Waterford.

Diabetes Ireland;

•  Kieran O’Leary, CEO
•  Hilary Hoey, Chairperson
•  Anna Clarke, Head of Research & Advocacy.

National Clinical Leads in Diabetes;

•  Dr. Nuala Murphy, Clinical Lead in Paediatric Diabetes
•  Dr Ronan Canavan, Outgoing Clinical Lead in Diabetes
•  Ms Siobhan Horkan,  Programme Manager for the HSE’s Paediatric Diabetes Clinical Programme

Four patient delegates;

•  Davina Lyon (Kildare),
•  Elizabeth Murphy (Waterford),
•  Grainne Flynn (Clare)
•  Rebecca Flanagan (Clare)

You can find out more about the patient representatives at the end of this post.

When the event was announced publicly, the four of us and Diabetes Ireland went to our diabetes online community asking if people would send emails to their own TD’s to represent them at this briefing. The response was overwhelming! And the true meaning of the word community was reinforced. Each TD we spoke to said they had received several emails and we felt you all in that room with us that day.

What a lot of pressure though, to speak for so many people:-O

What happened on the day?

Kieran, Anna, and Hilary from Diabetes Ireland, and Dr Murphy and Ms Horkan, greeted the four of us in Buswells across the street from Leinster House at 11am. With Dr Canavan, arriving in true superhero style; bike helmet and backpack. :-) 

We knocked back a quick one to steady our nerves!!!! No we didn’t! Three of us discussed our insulin adjustments for the nerves, excitement and the pressure that was causing some high BG’s and we had time for one very strong cup of coffee. Then it was show time!

Over the road we went, but first, get your photo taken;-)

The AV room in Leinster House is much like a small lecture room in a university, seats are not as comfy though. Frank O’Rourke & Mary Butler got us organised and settled.

Rebecca was brave enough to take the baton first. She gave a moving and detailed account of all the daily diabetes tasks that her 16 year old daughter has to do to help her manage her diabetes. We found out afterwards that this surprised a number of people who were under the impression that managing type 1 diabetes only involved eating healthily, taking insulin and forgetting about diabetes the rest of the day.

Davina Lyon spoke next giving her experience of making the very brave decision to go on an insulin pump only to discover that there was a waiting list and the only member of the diabetes team who could provide her with the training to use an insulin pump was on medical leave for the past six months.

Both our advocates spoke about the daily anxieties and concerns we feel living with type 1 diabetes such as the threat of diabetes complications, overdosing our insulin and the exhaustion of working out complicated daily mathematical problems.

Dr Murphy told us how “Right now, consultant paediatric endocrinologists are urgently required in Limerick, Galway and in the South East of the country. In Dublin, paediatric diabetes services are overflowing with insufficient clinic capacity to deliver high quality care. We have a shortfall of consultants, nurses and dietitians in each of our Dublin hospitals and with the new Children’s Hospital pending, planning for these posts needs to happen now”.

“In December 2015, a new paediatric diabetes strategy was launched which put forward a strong platform on which to build a high quality service with equity, local access and support for all children with Type 1 diabetes and their families, regardless of where they live in Ireland. As yet, we have seen no progress on implementing this strategy.”

TDs were informed that not a lot of extra resources were required for this. At present, 10% of the health budget is spent on diabetes annually with 60% of that spent on dealing with diabetes related complications. If just 0.4% (€5m) of that annual spend was re-directed towards funding the paediatric diabetes strategy, huge financial savings from preventing diabetes related complications would be accrued in future years” added Dr Murphy.

Dr Canavan, Consultant Endocrinologist, St Vincent’s & Loughlinstown Hospitals said “we have the costed strategies for paediatric, adult Type 1 & Type 2 diabetes that will address health inequalities, quality of life and health service planning to minimise expenditure and maximise patient care.

“We know that we can reduce the staggering amount spent on complications each year. In the past few years, the diabetes community has worked with the HSE in reducing the cost of diabetes medications and devices, making financial savings. We need those savings reallocated to providing the manpower resources to cope with the rising numbers and to encourage more effective daily management and better health outcomes. We need a multi-annual resource commitment to achieve this, rather than the annual “cap in hand” approach we all go through to try and get a few additional posts each year.

In time, we will then see a reduction in annual diabetes complications spending which will be good for the exchequer and more importantly quality of life”.

The presentations ended with a question and answer session from our TD’s.

It’s ironic that we, healthy people with diabetes, were there asking for an investment into keeping us healthy. Yet, if we had complications we would have a lot of what we need to manage those. Cart before the horse!

What were we asking for (the short version)?

The HSE has put measures in place that have reduced the cost of diabetes medications and devices, making financial savings.

We want those savings reallocated to providing the manpower resources below. We, (the service providers and the HSE) need to;

➜ Continue to support and implement the Type 2 Diabetes Cycle of Care Programme

➜ Implementation of the Paediatric Diabetes Model of Care

➜ Publish and implement the Adult with Diabetes Model of Care.

To do the above We need you, our TD’s and policy makers, to;

➜ Commit to a multi-annual funding programme to ensure that funding is in place for all of the above ➜ And that it is implemented in a timely manner.

Wrap it up!

We had to clear out of the AV room to allow the next group in. And the questions and discussions continued outside. Of course, before you leave always, always, get a photo inside the gates of Leinster House with purple socks in it!

Then we grabbed a lunch, hightailed it outta Dublin to make it home in time for your daughter’s 6th class graduation mass.

The four of us have received emails from various TD’s since Wednesday stating that they are supportive of what we are asking for and to keep them informed. Diabetes Ireland has another roundup of what happens next here.

And of course watch this space!!!

Huge thanks has to go to;

Frank O’Rourke, Mary Butler, Diabetes Ireland, Davina Lyon (all starts with her folks!!!), To our DOC. And to the gentleman who picked up my phone that I dropped & lost as I got out of the taxi and to Davina for picking up my handbag that I had forgotten all about and left in the AV room. Oops!

Who are your patient reps?

Davina Lyon; is a person with type 1 diabetes for 8 years from Kildare, a diabetes advocate, diabetes blogger and co-founder of the Diabetes T1 Ireland website and facebook page, which is aimed at providing information and support to people living with type 1 diabetes. Read Davina's review of the briefing here.

Elizabeth Murphy; is a person with type 1 diabetes for 40 years from Waterford, a diabetes advocate and works in information technology services.

Rebecca Flanagan; is mother to three very beautiful girls, her oldest, a 16 year old with type 1 diabetes for 8 years. Rebecca and her family live in Co. Clare. Rebecca is a diabetes advocate, marathon runner always raising money for diabetes and is co-founder of Thriveabetes. She also runs her own self catering business.

Grainne Flynn; is a person with type 1 diabetes for 23 years, originally from  Offaly, now living in Clare. She is a Diabetes Ireland volunteer, Diabetes Blogger, and Co-Founder & Event Organiser of Thriveabetes.