Supporting Young ones Living with Diabetes Mellitus in Ghana …and beyond.
October 2012 was the month I decided I had to actively start a support network for young ones living with Diabetes in Ghana. I had been working in Effia Nkwanta Regional Hospital for about 2 years and I had noticed that we had a number of youngsters living with Diabetes who were poorly managed.
My first encounter with a young person with Diabetes was when I was a resident in Korle Bu Teaching hospital. I remember the teenage girl who came for Monday clinics with her uncle. He was always complaining about her behaviour of not eating the right things. I remember we bonded in a funny way such that every time she came for review, the nurses would make sure that she sees me and we would always have a good laugh.
Next encounter was with 11 year old Issaka who was newly diagnosed and brought from the polyclinic to our team on duty. He and his dad looked so scared that day as they had no clue what was going on. Prof Neequaye asked me to take care of him when he was discharged making sure that he did not miss any school. This began our 7 year relationship. With the help of other doctors we made sure that he never missed a day of school and was rarely admitted for complications of diabetes. He currently a Senior High School Graduate awaiting entry into a tertiary institution.
I started Diabetes Youth Care in the Western Region (with the aim of providing some form of support for young ones under the age of 30 living with diabetes) with 5 young ones. Over the years, it has grown to a population of more than 100 with most of them in the southern part of the country.
The primary aim is to create a platform to educate, inform and manage these young ones.
One of the first things which struck me was the huge void in managing adolescents with chronic diseases. I am not an adolescent health specialist, but I realised that just paying attention and having a little bit more time for these young ones will go a long way to make them comfortable enough to talk to you and share their problems.
Also, their unique problems did not encourage them to attend chronic disease clinics with the adults. I found out that the adolescents would rather skip the clinic or present to the clinic late, than have to sit with the adults.
Some of the questions or comments made by the adults at the clinic were at times derogatory.
- You were eating too much sugar so you got diabetes
- Oh no I don’t think I would let my son (or daughter) marry someone with diabetes.
- Are you bringing your mother (or father) to the clinic?
- How can you get diabetes at this young age? What did you do wrong?
Comments from health personnel were
- Screaming out the blood glucose results and reprimanding them for the abnormal values
- Telling them to stop eating too much sugar
- Telling them they would die because of the diabetes (especially at the time of diagnosis)
With their privacy almost non-existent, most of them would rather not come to the hospital. This resulted in poor compliance to their medications and development of complications leading to poor quality of life.
Our healthcare institutions are mostly not adolescent friendly as many do not have clinics solely for this category of people. Managing diabetes is also expensive. Insulin which is supposed to be under the coverage of health insurance is not in most health care facilities. The hospitals which stock the medication are few and when they do, they provide only one vial per month which is highly inadequate.
Vital to the management of diabetes are glucometers and strips for home monitoring, syringes for insulin injections, none of which are covered by the national health insurance. Most of the young ones living with diabetes cannot afford to buy these and rely on either monthly or 2 monthly checks of fasting blood sugar when they come to the hospitals for review.
Education about diabetes is minimal especially when it comes to managing children and adolescents living with the condition. With limited number of paediatric endocrinologists in the country, most young ones when referred to the tertiary centers refuse to report due to the high Doctor to patient ratio. Most of them resort to herbal treatment or prayer camps and these results in dire consequences/complication.
The journey so far…
The main aim of the Support Network Diabetes Youth Care
- To serve as a support group for young people living with Diabetes Mellitus
- Educate young people living with diabetes about nutrition, eye care, foot care, etc.
- To share information about trends in the disease management
- To teach newly diagnosed young people with Diabetes Mellitus how to deal with various problems they may encounter
- A platform for sharing stories about living with diabetes to the general public
- Solicit for various supports in relation to Diabetes care and management
The team comprises of both medical and non medical volunteers who help with monthly support group meetings held currently in 3 regions (Western-Takoradi, Central-Cape-Coast and Greater Accra-Accra).
There is also an online support network for both parents and wards living with Diabetes to answer questions and concerns.
There have been 2 donations of insulin for the young ones under the age of 23 living with Diabetes, and free glucometers and strips (2013/14) from the International Diabetes Federation (IDF)
In order to educate parents, wards and teachers, 3 brochures have been created and distributed to help in educating the general public and guardians about managing diabetes especially the acute emergencies of diabetes. This has empowered both the young ones and the guardians.
Using social media, the support network has also been able to educate the general public about diabetes especially in young ones and shared stories encouraging other young ones living with chronic diseases to reach their fullest potential.
Financing of the support network is mostly through donations by friends and family. Major events like the World Diabetes Day in November are sometimes supported by corporate bodies.
A lot is required in the management of diabetes in the young and it is the prayer of the support network to have holistic care for every young person living with diabetes in Ghana.
We hope that all persons living with diabetes will have the multi-disciplinary management comprising of
Endocrinologist
Internist
General Physician
Psychologist
Nurse
Dietician/Nutritionist
Podiatrist
Peer Support network
And most importantly access to insulin and other implements required in the management of diabetes, i.e. glucometers, strips; syringes and affordable laboratory monitor like the HbAIC (glycated haemoglobulin).
Future is bright for the young ones in the support network. Diabetes Youth Care hopes to be in every region in the future and would be there to support every young one who is diagnosed with diabetes and support the families also as they go through difficulties which they may encounter.
Diabetes Youth Care has given a lot of hope and chance of survival to young ones living with diabetes and this is seen in the stories told by the members after they join the group. The peer support has be great in creating friends who share and encourage each other daily and mentors for the younger ones living with diabetes.
The current motto is #DIABETESWONTSTOPUS
You can support Diabetes Youth Care by visiting our website www.diabetesyouthcare.org (donate your time or money)
Invite a young person living with diabetes through our contact on social media www.facebook.com/diabetesyouthcare
or on 0503979411 (voice or Whatsapp)
Dr. Nana Ama Barnes
Effia Nkwanta hospital
MOTIVATING FOR IMPROVED PRODUCTIVITY
In difficult times we need leaders who can reconceptualise leadership and refocus their subordinates. The time has come for leaders to motivate their staff to increase productivity in spite of the many discontinuities and changing realities. This is a season in which excuses are more than innovations. Indebtedness of National Health Insurance Authority to health facilities has adversely affected financing of our daily operations. Clients are battling with staff attitudes and low morale among staff is generating apathy at the workplace.
LOVE, LOGIC AND SICKLE CELL DISEASE
Love, according to the Merriam-Webster dictionary is a strong or constant affection for a person while logic, simply, is a proper or reasonable way of thinking about or understanding something.
NOTICE OF ELECTION OF NATIONAL OFFICERS FOR 2021-2023
Notice of Election of National Officers for 2021-2023
RED IS THE ONLY COLOUR THAT MATTERS
By Dr Adoma Dwomo-Fokuo Odame
Dear Honourable,
I offer you my condolences but I also say ‘welcome to our world’.
Reading your piece ‘I am angry, I am sad, I am pissed’, I feel your frustration and your pain but I am tempted to think you just returned to Ghana last week after many years stay abroad.Because this is what we go through daily here.
Its not just about beds..no..its about many things in the healthcare system.
I am a paediatrician and I speak for the children. Many hospitals do not have the equipment children need to help them survive and thrive. Many hospitals do not have NICUs.(We are creating awareness about neonatal jaundice this month so I will just mention phototherapy machines that are used to treat newborns with jaundice before it damages their brains…permanently). Many of our district hospitals do not have these machines, let alone radiant warmers..and incubators…or infusion pumps or monitors…oh and childhood cancer is not even covered by health insurance.
You felt pain because the child of someone you know died..and despite your calls, you couldn’t save the child. Thats how I feel every single day I work in this country. Welcome to my world. You have the liberty of talking politics and placing blame at peoples doorsteps and therefore can sleep easy. I don’t have that liberty as no child votes in Ghana…every child has red blood. No child has a mixture of red, white and blue blood or green, black,white and red blood. The blood of children is red. Period! The red blood cells of children are not shaped like umbrellas or coconut trees or elephants. The red blood cells of children are all little circles.
You can easily turn this into a #fixthecountry #fixyourattitude chant. But I cannot. I will always remember the eyes of the parents as they watch their child suffer and die.I will remember the gasping breaths. And I will know what could have been done but wasn’t done because of the decisions and inactions of people.
But enough of this. Let’s focus on the way forward. Do not let this child’s death be in vain.
Honourable, find out what really went wrong.
Why did powerful men need to get involved before ‘things’ could happen?
Why were there no beds? Why couldn’t another hospital handle it?
Why did the child have to cross regions to get care?
Is it a matter of equipment or personnel or both?
What will it take to prevent this from happening next week?
Please get into your car and drive across, trace the journey this child made and find out from the people on the ground what really happened. Do not call before you arrive in the hospital else you will meet a hospital scrubbed clean and painted white, with dinner fit for a king served to you…and it will be from the hospitals meagre resources; money that could have bought a defibrillator.Go unannounced and get the true answers. Talk to the people on the ground, not those in the suits.
And thats not all. When you find the problems, come up with solutions that are devoid of politics.
What can you, with all your power ,do to turn things around at your level.Let it be a memorial to that lost child.Thats what matters.
Do not tell me that its not your duty to do this fact finding task and that there’s a whole ministry for health.
I didn’t train as a telephonist, nor letter writer, nor fundraiser. I learnt medicine. But if I don’t write letters, fundraise or make thousands of calls, in addition to clinical work, the kids will die in my hands. If I don’t piece together a voltic bottle and tubes, I can’t get bubble cpap for a baby. I am not a biomedical engineer. If I don’t fix onion bulbs on a wooden frame, I can’t get a warmer for newborns. I am not a carpenter.
But we all go the extra mile so the Ghanaian child can live .So get on the road for this fact finding journey.You may realise that everyone has the blood of the dead child on his/ her hands.From road contractors to the ministers. Everyone.
And that’s not all. On Monday or whenever, kindly go to parliament, talk to your colleagues and pour your heart out to them. Remember the emotion that you felt as you poured your heart out on facebook. And let the change begin. Marshall your colleague MPs to do something to save the lives of Ghanaian children. (If they even adopt the kids ward in their districts hospitals, buy phototherapy machines for their hospital NICUs and get childhood cancers on insurance, I will be less pissed)
We are all sad and angry and pissed..but let it bring change.
Don’t let the child’s death be in vain. Red is the only colour that matters.
Yours sincerely
Sad, Angry, Pissed Adoma
Ps
Please tell the other Honourable, that if it takes him being admitted in a hospital abroad to see how ill our hospitals are, then I pray that he and all the other decision-makers get admitted to a children’s hospital abroad and have their eyes opened.
GMA COMMUNIQUE ISSUED AT THE END OF THE NEC MEETING HELD MAY 28-30, 2021
The National Executive Council (NEC) of GMA having met and deliberated extensively on developments concerning the demands by Ghana Medical Association of Medical Laboratory Scientists (GAMLs) of Komfo Anokye Teaching Hospital (KATH) chapter to have two Haematologists (Laboratory Physicians) removed from the laboratory and the practice of laboratory medicine generally in the country, hereby states as follows;