WHAT BREAKS Chrys Ngwa’s heart is the fact that his six-year-old daughter Keeshya’s fingers are in danger of being calloused as a result of blood samples being taken from them six times a day to measure her blood sugar levels.
Keeshya is one of approximately 300 children attending Cork University Hospital (CUH) for the treatment of type 1 diabetes, an auto-immune condition usually diagnosed in childhood.
Her father says that “the number one thing I’d like to see available for Keeshya at the hospital is a HbA1c meter”. This is a laboratory test device that shows the average amount of sugar in the blood over three months and tells patients how well they are controlling their diabetes.
“Just one drop of blood is needed instead of taking a phial of blood and sending it to the hospital. I was so surprised when we went to the children’s hospital in Crumlin where a reading of Keeshya’s blood sugars was available after just seven minutes from the HbA1c device.
“It’s the best reading for a diabetic. The daily readings don’t matter as much. It’s the long-term performance that’s important. As far as I’m aware, Cork is the only main centre that doesn’t have this on-the-spot meter.
“The advantage of it is that kids only need to give a small piece of blood to get a reading very quickly.”
When it comes to the treatment of type 1 diabetes in children at CUH, there are other shortfalls.
Chairwoman of the Cork branch of the parents’ support group for children with the condition, Charlotte Pearson, points out that the three nurses are part-time.
“We should have three full-time nurses, according to best practice. We should also have two full-time dieticians as well as psychological support or social work support. We should have a dedicated space for the children.
“In the current climate, we’re not sure what we can get. We’ve achieved a lot over the past couple of years and we’re grateful for what we have. The workload of the nurses is unbelievable. We’d hate to see them burn out.”
The unit’s dietitian is currently on maternity leave. “She is being replaced by one of the dietitians from the adult diabetes ward. She’s only available to us on a part-time basis. But that’s good because the last time our dietitian was off, we didn’t get any cover.”
Pearson, a member of Diabetes Ireland, is the mother of 18-year-old Karen, who was diagnosed with type 1 diabetes at the age of five.
She has been campaigning for better services at CUH for years.
“Now that we have our new doctor, Stephen O’Riordan, insulin pump therapy is becoming available.”
An insulin pump is a costly medical device used for the administration of insulin by a syringe or a pen. It’s an alternative to multiple daily injections of insulin and allows for intensive insulin therapy when used in conjunction with blood glucose monitoring and carbohydrate counting.
Dr O’Riordan, a paediatrician and endocrinologist, was unavailable for interview. A HSE spokesperson said that “a structured insulin pump education programme has commenced in CUH with a number of patients having commenced insulin pump therapy. The programme will be developed over the coming months.”
Pearson says patients in Cork felt somewhat neglected over the years. “If you wanted the pump therapy, you had to go to Dublin.
“A number of years ago, a pilot scheme was set up by Dr John McKiernan (Dr O’Riordan’s predecessor). He put five children on pumps and that was it. Everyone else had to travel to Dublin.
While Pearson welcomes the availability of insulin pump therapy, “there are certain criteria that patients have to meet. You have to be willing to learn how to use it properly. My daughter never used pump therapy. She didn’t want it when she was younger.”
Psychological support is “much needed at CUH. You’re talking about a chronic illness that is never going to go away. It can be difficult during puberty. Young people with the illness see themselves as being different to others.
“There can be discrimination in schools against them with people being fearful of the idea of injections. I think psychological support would help patients to get over the rough patches of having the condition.”
Pearson says there is a lack of awareness of type 1 diabetes. “If you speak to a member of the public, they know a lot about type 2 diabetes. But if you mention type 1, they say that’s the ‘bad one’. When you’re an adult and you get type 2 diabetes, you’re probably in your 60s or a bit younger the way things are going now.
“But when you get type 1 diabetes as a child, you have it all your life and have to be very vigilant.”
Type 2 diabetes can be related to diet as well as age, says Pearson. “With type 1, your pancreas is not producing insulin so that insulin has to be reintroduced to the body. It helps unlock the energy from the food consumed.”
There are 3,000-4,000 children, adolescents and young adults living with diabetes in Ireland, most of whom have type 1 diabetes. Type 2 diabetes is much more common.
Ngwa is concerned for his daughter. “Juvenile diabetes is less researched compared to adult diabetes. Children don’t have a voice. But we’re pushing to get a HbA1c meter in Cork. It’s expensive but affordable.”
