I have very recently returned home to London from Ghana, where I decided to venture to after a WhatsApp catch up with my friend Fred Appiah-Twum (pictured with me in Lethal Weapon style), who was an IDF Young Leader in Diabetes for Ghana when in Melbourne in 2013. It was a case of ‘LETS DO IT!’ a search on Skyscanner for cheapest flights and we went from there… In venturing to West Africa, I knew it was going to be very different in diabetes care compared to what it is like in the United Kingdom and I wanted to find out more about how communities go about handling their diabetes, whilst connecting with groups and passing on encouragement and education from my experiences.
Education is a key area in diabetes management, which with DiAthlete progressing into a social enterprise, we aim to deliver in fun and practical methods – particularly for young people. The vision is to empower a positive generation of DiAthletes in the future instead of the negative feeling of ‘having to be a diabetic.’ To go to West Africa and produce educational programmes for local communities and raise awareness was something with the potential to be very positive.
Shortly before the journey to Ghana I had visited Pembrokeshire in Wales and met the local type 1 diabetes community over there, with a talk and an educational programme. It went down very well and I met some wonderful people – namely young Jarvis who at 13 is perhaps at a difficult age in terms of diabetes management, yet I saw a very strong attitude in the lad – enhanced by his love for football and sport. I believe the world of sport is an area to benefit people with diabetes, a good and active lifestyle is ultimately the best way to 1. learn our bodies and diabetes and 2. improve long term control.
The education programme was fun, everybody seemed to enjoy themselves whilst picking up good advice and tips in improving diabetes control during sports and exercise. I am working on developing these programmes for communities in the future! And having operated them in Miami, London and Belfast, I wanted to bring these experiences to Ghana too!
I received a few tweets before my travels from @Diabully – which I found the views quite interesting. DiaBully was being critical of me for a twitter view shared of ‘beating diabetes.’ Well I actually shared a view of diabetes in my life, ‘diabetes is not my enemy it is my competitor and you should respect your competitors in order to beat them’ – as each day we have to balance blood glucose levels with decisions on insulin management, diet and exercise, in that sense we compete with diabetes for control. Viewing it as an enemy won’t help you in living life with it. In @DiaBully’s criticism of me a view was shared of working with your diabetes and not ‘beating’ it. I respect that – effectively we are talking about the same thing though. It was a good post made however and I recommend reading it – although I suggest to @DiaBully less of the ‘Bully’ concept as we are a community, a team in diabetes around the world and that is how we strengthen, by working together. Remarks made with ‘*smirk*’ just comes across as unpleasant – don’t rub people the wrong way as you can do a lot of good with the information you share.
In going to Ghana there was one person I wanted to connect with in advance, who continues great commitment and awareness to support developing areas of the world in type 1 diabetes care – Elizabeth Rowley and her organisation T1International. We caught up with a few calls to see how we could directly share awareness and Liz tipped me with how care was in Ghana from her connections and interviews.
Diabetes Youth Care is an organisation based in Ghana, operated by Dr Nana Ama Barnes, who Liz and T1International have worked with and I happened to have made contact with through my research of diabetes care in Ghana. In connecting with Dr Barnes, we had planned for some events in my visit to Ghana, to meet schools, hospitals and the Diabetes Youth Care group. DYC bring young patients living with diabetes (type 1 and type 2) together to support education and advice whilst socialising. In meeting them, as I will share, I was really impressed by their unity.
Arriving in Ghana it was a completely new experience for me – I had never been to Africa before. In advance I had to get a visa and all vaccines arranged. Whilst I had thought I had got myself a good deal on Skyscanner for the cost of flights, that was swung out the window in regards to £70 for a yellow fever vaccine, £70 for a visa (for arrival in 3 days but it arrived in AMT ((African Man Time)) in 7 days) and all else… fortunately, for me, a good friend of mine’s trip to Kenya was cancelled and he had in date Malaria tablets which he wasn’t going to use, so that saved about £80… despite the many costs I knew we could start something positive on this journey. Not only in Ghana, but in receiving supportive messages from the likes of Adejumo from Nigeria and Yemurai in Zimbabwe, who I know through being a Young Leader, perhaps this was just something small and in one part of Africa, but maybe in future we can grow something. They call for change in many areas of diabetes care around the continent.
It was great to catch Fred and I stayed with his family when in Accra – who were all wonderful people and his mother, Vida, cooked excellent food and absolutely spoiled me! After a day to explore – where I also met Dr Nana Ama Barnes in person to discuss our plans – a day later was the first mission. The empowerment factor – we had planned a 25km route, so just over half marathon, from Tema to Labadi Beach on the other side of Accra. My objective was to keep control of blood glucose levels through the run – putting what I preach into practise – and along the way we had a few diabetes community members meet us.
In meeting some of the DYC group members on the run, we had to plan for the run timings to be in the afternoon, to meet the guys outside work and school hours. This meant the challenge was somewhat more challenging – running in the full extent of the West African heat at its warmest point of the day. I had to make a decision on my insulin for the run. Now my tactic which works for me in long distance running is to greatly lower my basal insulin injection in the morning – operating on a split dosage, morning and evening with Levemir insulin. The decrease of my basal means I have less insulin working in the background when I am performing aerobic exercise for long spells. Marathon running is on-going, at a constant pace, so blood glucose levels decrease during the exercise by burning energy at a consistent rate.
In general for being in Africa, where the weather is a lot warmer than Britain and of course very humid, I decided to lower my basal insulin a little more from average any way, as in the heat you sweat more and blood glucose levels will decrease when moving about just walking, if too much basal insulin. Instead of 14 units of morning Levemir insulin, I began by taking 13 to see how it went.
The evening before the run Fred turned around and said he wanted to give it a crack and run as much of it as he could. It was very brave of him considering he had no preparation for it!
With the run taking place in the afternoon, it meant a big call on insulin. To reduce my basal insulin would mean throughout the course of the day, when not exercising, my levels might soar hyper. I decided to reduce but not to the extent I would have done so if I was starting the run in the morning – I injected 6 units of Levemir, so around 55% of my normal split morning rate was reduced. I injected two units more bolus (quick acting) insulin with my breakfast.
This turned out to be a bad move – I found myself on a mild hypo just before the run! The key to success for the run for my blood glucose control was consuming carbohydrates for the rate of exercise and humid conditions. Fortunately, following the mHealth Grand Tour the month before cycling across Europe, I was stocked up with a load of energy gels that were left over. We were in good store for carbohydrates – important for both myself and of course Fred.
We endured the run with a support Taxi – the Taxi driver had our glucose supplies in his car and he would pull over and meet us every couple of kms. It was probably the warmest day I experienced whilst being over there – to make matters easier. We have a saying back home, ‘Sod’s Law.’ Fred battled on and we kept a nice and tame pace, I could tell he was struggling but he kept pushing as far as he could with great determination. He achieved a good 10km in harsh conditions! Then Fred was in the support car and turned photographer! On my own running along the long road out of Accra to the beach I was getting some funny looks – I was the only white guy and I was running in ridiculous heat! This provided an opportunity to raise awareness – and Fred excelled at that part, explaining the details of what diabetes is to onlookers.
I cracked right on… the pace improved and improved, I felt strong in my strides – which surprised me as only the week before I had endured a tough Survivor Challenge which physically demanded every bit of my body – and of course not long before that was the cycling tour of 1500km in 9 days, including the Alps!
The further I went the quicker I went… I do always bide by the rule of finish stronger than you start – but this was ridiculous!
Every 5km or so I would check my blood glucose and take on a gel if needed. At one point I ate a loaf of bread which Fred’s family make at home – I had crashed from 9mmol/ls to 4.1 – bordering the hypo zone. Carbs, carbs, carbs! Although the long, long road which went on for the majority of the route was mentally challenging – I picked energy up from engaging with the community really, people waving at me, kids running parts behind me, cars tooting… it seemed to be creating a carnival atmosphere. I got to the beach to run the final 5 k a bit early, so Fred and I stopped for lunch and we soon met Issaka and Israel from DYC. Issaka was a bit shy to begin with but then opened right up and asked many questions on type 1 diabetes – before running the final bit beside me! Israel has type 2 diabetes, diagnosed in his 20s despite being a fit and active basketball player. You see type 2 diabetes isn’t all about poor health or obesity, it can develop for multiple reasons and is common in ethnic genetics.
Issaka did a great job in running with me – he has bundles of energy too! And we got the job done at the Afia Afrikan Village.
We held a talk at Legon Secondary School and I was amazed by the level of interest by the students – who did not have diabetes but really wanted to learn about it, find out the symptoms and ways of living with it. Whilst there was a stern interest from the students to hear from me as a ultra marathon runner living with diabetes – what I really enjoyed was how they wanted to also engage with the subject of diabetes. This gave a platform to both Fred and Israel who were with me to thrive in passing on education and awareness. I believe that real change for the positive future of healthcare comes from within the cause itself , particularly in developing regions. In encouraging a platform for advocates from within, who have been there, experienced it and have stories to share, to rise up and make a difference, I think that is where development can excel from. I saw that in Fred and Israel.
Over the weekend we travelled to Cape Coast, Fred and I supplying a DiAthlete Education Programme with Diabetes Youth Care at the Hospital. In knowing I was doing this programme with a large group of young adults and children living with diabetes, initially before going I requested from a diabetes associated pharma company to receive a few testing meters and testing strips for blood glucose management. The reason for my request was because I am aware that in Ghana and most of Africa, whilst there may be supportive organisations around such as Insulin For Life and Life For a Child, within the countries themselves for many to receive crucial supplies such as insulin and blood testing meters / strips, people have to pay good money to get a hold of these supplies. In the UK we have the NHS (National Health Service) a system which may have faults in areas but ultimately is the best service in the world – tax payers across the nation effectively supply a free healthcare system. With type 1 diabetes this means we do not go without essentials such as insulin! Imagine having to buy it every couple of weeks?
I wished to approach a company that have blood testing supplies as to do a diabetes education programme without patients having to use their own blood testing strips they paid for, producing education where needed in a practical way without cost.
Bayer were the company in this instance and I write this in a productive way for them as suppliers to an area in need of more support. Bayer rejected my request with the reasoning explained on a phone call that in West Africa they test their blood sugar levels in mg/dl, not mmol/ls like their devices in the UK. They were mistaken in this instance, in Ghana and I believe most of West Africa they test their blood sugars in mmol/ls. My suggestion is to better research your market if supplying out there for a small benefit and respect to those living out there with diabetes. I tested each group member with my own blood testing strips and meter – which took up a lot of time for the programme and now means I need an emergency supply of testing strips provided from the NHS , which isn’t entirely fair on them.
On testing blood sugar levels it was clear to see the majority of those living with type 1 diabetes had high blood glucose levels. Issaka managed an impressive 8.9, the two with type 2 had good levels and the ‘type 3s’ family members of course were in good range. A big problem is the insulin in my opinion. Mixtard, which Novo are the main supplier of, is the main insulin available. It is most affordable – with Lantus in second, which from my understanding is because Sanofi lowered the direct costs. I would love to see more of that from the Pharmas. Whilst access to insulin is the most crucial aspect of survival with diabetes, the problem with Mixtard insulin, from my own experiences on mixed insulin as a child, is it absolutely limits your flexibility and range of control. If you are injecting just once or twice a day, with that insulin supposedly lasting for the whole day, then everything has to be taken into account upon that injection and daily routine – from what time you eat to what you eat, what you can do in the day regarding exercise and what happens during the night.
On mixed insulins it becomes a lot harder for control, no question. It becomes even more important to have lower carbohydrate meals and to test your blood sugars more regularly. PROBLEM! In Asia and Africa the diets are more consistent of high carb meals, a lot of rice dishes for example. There is an unpredictability in a mixed insulin and so testing blood sugars is particularly important – and yet people can only really afford to have enough supplies to test blood sugars once per day (at best). To be perfectly honest when I went around the room with the blood testing meter and finger-pricker (with changed needles for each member) a lot of people were quite shy about the concept of being pricked. As though they had not done it much themselves. And they hadn’t – some might only be able to test blood sugars once every few days. The facilities need to improve. Maybe my very brief experience can help open an eye or two?
Having met the Diabetes Youth Care group in Cape Coast what I can say is this – these are fantastic people. All willing to learn, all willing to work together in a community and support each other – type 1 and 2 – to share their experiences. Fred once again thrived in the opportunity to educate too. Dr Nana Ama Barnes is a credit to any healthcare professional, if the healthcare pros in the UK had half the level of her commitment our care would improve greatly too. And she does this with a lack of resources and funding, on her own personal time.
Shortly after my trip I shared small view of what I witnessed and where support lacked on my social network and was hounded by a lady in a power position in terms of diabetes care in Ghana. I mentioned at the beginning positive change can come from within – by giving the likes of Fred Appiah-Twum a platform to reach out from and the people living with diabetes likewise. Although I am for national organisations to operate for they can reach large networks across entire countries in diabetes care, they have to be run professionally and with all communities. What was displayed to me by a Mrs Elizabeth was the complete opposite, signs of clear problems from within. One person cannot make all the decisions alone and run things independently on a national scale, I know what is right and what I publicly received, with an alarming photo shared on insulin and blood testing supplies in a warehouse ‘awaiting to be picked up by my host’ when I had met many people short on supplies, summed up what is wrong.
As Nigerian young leader Adejumo replied: ‘How comes there are lots of supplies of essential commodities if that picture is what am thinking and yet Gavin could meet those who don’t even have access to them?’
Here are some of the public quotations in an attack against me by Mrs Elizabeth of the National Diabetes Association I found very alarming:
‘Please remove this post immediately as you did not come to Ghana through the proper Chanel’s, and did not do your home work, no child and I repeat no child in Ghana needs blood glucose meters for diabetes.’ (many children I met can test just once a day – at best)
‘It’s sad how people are so selfish and use the name of diabetics to enrich themselves.’ (I am so selfish I paid around £600 of my money to go over and meet diabetes communities, selling my own Dexcom to support funds.)
(An attack on Dr Barnes:) ‘Stop lying to people about our status in Ghana, you know very well there are supplies for children with diabetes in abound acne, but due to your selfish gains have refused to pass through proper channels to operate.’
There was many more insults and remarks made – does this sound like someone who should be in a high position for diabetes care across a nation?
I look at the likes of Adejumo and I see a real leader from within, he has created Nigeria DOC and regularly interacts with people in Nigeria on diabetes care – giving them an opportunity to share their views and be heard. I saw how well Fred thrived in Ghana, spreading awareness and education on the opportunities in this tour. We need to continue the opportunities and hearing the voices of the people from within – Africa is developing and the next generation of diabetes is with it too!