A group of mothers of children with Type 1 diabetes held their first meeting in Waterford last week – one of many which they hope will help in dealing with this life changing condition.
DIABETES is often in the news given the increasing amounts of people being diagnosed with the condition.
Locally here in Waterford, a campaign has been underway to obtain greater services for diabetics at University Hospital Waterford (UHW) which has been highlighted at length by this newspaper.
However, despite all this attention, the condition of diabetes is still misunderstood by many people – in particular the differences between Type 1 and Type 2 diabetes.
Type 1 diabetes is often diagnosed in childhood; is not associated with excess body weight; is often associated with higher than normal ketone levels at diagnosis; is treated with insulin injections or an insulin pump; and cannot be controlled without taking insulin.
Type 2 diabetes is usually diagnosed in those aged over 30 (but is increasing amongst children); is often associated with excess body weight; is often associated with high blood pressure and/or cholesterol levels at diagnosis; is usually treated initially without medication or with tablets; and it’s sometimes possible to come off diabetes medication.
UK Prime Minister Theresa May , who is a Type 1 diabetic, has spoken openly about living with diabetes and revealed that she injects herself with insulin up to five times a day to treat her diabetes.
“You just get into a routine. You depend on that insulin and you just build that routine into your daily life. The crucial thing to me is being a diabetic doesn’t stop you from doing anything,” she said in an interview earlier this year.
She has urged fellow diabetics to not allow the condition to hold them back from doing what they want in life.
“Yes, Type 1 diabetes brings a change in one’s life. I have to inject, test my blood sugar and so forth, but it doesn’t mean there are things I can’t do. You just build that into your life,” she said.
If the UK Prime Minister can live with the condition while also engaging in such a busy work schedule, then there’s certainly hope for everybody else with diabetes.
However, for a child, dealing with diabetes can prove a lot more difficult.
Christina Sinnott, whose son Justin has Type 1 diabetes, organised a gathering last week in Waterford for parents of children with Type1 diabetes or any other adults with the condition interested in attending.
Initially, Christina noticed Justin was losing weight and urinating very frequently.
“He was eating more than I was eating during the day but yet he was losing a huge amount of weight,” she explained.
“I knew something was wrong. Diabetes was in my head because of my background in health, exercise and nutrition. I knew the symptoms but I wasn’t definite about it.”
Christina visited her GP with Justin and mentioned the possibility of diabetes.
“I asked if he could have diabetes as he had a lot of the symptoms. She said that if I was that concerned and anxious, I should bring him to hospital at some stage during the week,” said Christina.
Spurred on by a mother’s intuition, Christina brought Justin to UHW the very next morning.
“They were very shocked at how high his blood sugar levels were – and he hadn’t eaten or drank anything within the previous 12 hours as I knew they would have wanted him to have fastened,” she explained.
Despite suspecting that Justin may have diabetes, Christina says it was still a huge shock when he was actually diagnosed.
“I caught it early because of my perseverance,” she said.
“The GP didn’t pick up on it and made out that I was a mother overreacting about the symptoms – that’s the way I felt after the consultation. It’s scary to think that if I wasn’t as proactive as I was he could have went undiagnosed for longer.”
All of a sudden, Christina was immersed into Justin’s new lifestyle.
“I had a little cry but I just had to deal with it,” she said.
“I was in the early stages of pregnancy at the time so I was feeling very ill along with trying to deal with it but my family were great.”
Justin also had to adapt to his new situation as well.
“We tried to explain it as simply as we could,” said Christina.
“We used booklets to explain about the pancreas and that it can’t unlock the sugar and let it into the cells. He got to grips with it but I don’t think he fully understands the long-term severity of it and that if it’s not looked after, it can have significant consequences for his life. I don’t think anybody that’s not involved with diabetes fully understands that.”
Christina says there are still a lot of people in the dark about managing diabetes, particularly parents.
“It’s a minefield when you’re diagnosed at first or if you’re a parent of a child that has been diagnosed. It’s a huge amount to take in,” she said.
“Facebook is actually a great advantage to parents. I found that it has been a huge source of information for me,” she added.
After seeing many questions and concerns raised on Facebook, she organised the get together which took place last week in the People’s Park – which she hopes will be the first of many.
In attendance was Ann-Marie Kelly whose daughter Ella was diagnosed with Type 1 diabetes when she was 16 months old.
“She’s doing very well thank God. It’s completely different when you compare how we are now with this time last year,” she said.
Ann-Marie says Ella’s diagnosis was a huge shock to the system and a huge lifestyle change.
She had been to three GPs and none of them picked up on Ella’s condition.
“She was one of the youngest that UHW had seen with the condition,” said Ann -Marie.
“An adult can look after themselves. I’m not saying it’s any easier, but they have the mind-set to look after it. Kids just don’t know how.”
She continued: “You never switch off. I don’t want to switch off anyway, but you have no choice. It’s life changing. I’ve tried to get Ella into Montessori but it’s hard to find a space. Many aren’t insured to administer insulin. They don’t want the responsibility. You can’t really blame them, it’s a hard one to call.”
She believes the group and regular meetings will help in dealing with the condition and in terms of gaining additional advice.
“None of us are experts, we’re just trying to get on as best we can and we’re learning the whole time,” she said.
Shelly Finnerty also believes the group will help significantly.
Her son Adam (10) was diagnosed with diabetes last May.
“It’s great to have this get-together to pick up tips from everybody else and for Adam himself to meet the other boys and girls,” she said.
Also in attendance was Dawn Lee whose son Noah (7) was diagnosed with diabetes almost two years ago.
“He was getting up to go to the toilet very often and was really thirsty. I had read something somewhere about diabetes and thirst, and the penny dropped,” explained Dawn.
“Nobody in the family had diabetes, so we had no reason to suspect diabetes.”
Noah took twice daily injections of insulin for 18 months but recently got an insulin pump which he is gradually getting used to.
“He is hypo aware. He knows when he’s low but one of my fears is when he has to take over himself and manage the condition,” said Dawn.
She says he has a fantastic SNA (special needs assistant) at school, but managing the condition is still difficult.
“Noah is getting to age where he wants his own space. But he is after getting used to us being with him so we’re trying to wind back a bit,” she said.
Mena Fitzgerald’s son Theo (8) was diagnosed four years ago.
“He had the usual symptoms – he was thirsty and tired. We brought him to the GP and he was rushed into hospital,” explained Mena.
“There was no family history of diabetes on either side, so it was a massive shock. We didn’t know a lot about it. It was very hard coming home from the hospital. It was almost like bringing a new child home.”
Theo was also diagnosed with coeliac disease, as was Shelly’s son Adam (it’s common that both autoimmune conditions go hand in hand).
Mena has already seen the benefits of interacting with others through the Facebook group.
“I researched myself and found the group. It’s fantastic, I’d be lost without it,” she said.
She also believes meeting up as a group will have many benefits.
“Theo was very excited to meet another diabetic. It shows him he’s not alone,” she said.
Mena highlighted the day to day difficulties for a child living with diabetes.
“We have to check him every night during the night,” she explained.
“He would feel the symptoms during the day but he wouldn’t feel them at night. It’s terrible having to wake him up and trying to get him to drink Lucozade or eat something.”
She says the night checks can be very tiring.
“You wake up in a panic and it’s horrible that you have to think ‘is he still breathing?’. His brothers are great. They’ll say ‘Oh he looks low’ as they’re looking for a snack as well!!”
Even playdates can be difficult, and Mena outlined what was involved with one recent playdate.
“I had to drop him, then go back to do a check and give insulin at lunch. As he’s coeliac he had to have a special lunch. Then it was back at 5pm for his dinner,” she explained.
“His school is great and his SNA is amazing. A lot of kids don’t have that support. We’ve started a new system where he keeps a red card in his pencil case and raises it in class if he feels he needs anything from his bag.”
Liz Murphy, who has been leading the campaign for greater services for diabetics at UHW, was also present at last week’s gathering.
She has had Type 1 diabetes since she was a child but has managed to live a normal life and incorporate her condition into her daily routine.
However, she is passionately campaigning for better supports for diabetics at UHW.
In her attempt to secure a place on a DAFNE carb counting course (which is currently not available at UHW), Liz, who is a public patient for diabetes services, says she is being “passed from pillar to post”.
She has also highlighted the difficulties for people seeking to avail of insulin pumps at UHW.
Similar problems have been encountered by some of those who were in attendance at last week’s gathering.
“I feel like I’m ahead of the hospital, waiting for them to catch up,” said Christina Sinnott.
“They won’t give Justin a pump as they said he’s still in the honeymoon period. But I’m picking up new information through the group,” she said.
“I didn’t know that you didn’t have to wait. I was told you’d have to wait over a year.”
Shelly Finnerty and son Adam do shared care with Crumlin Hospital and UHW.
“Adam attends Crumlin every six months, and UHW every six months,” she explained.
“He’s going on the pump hopefully within the next few months. But at the moment we’re up and down to Dublin for the pump and carb counting.”
She would like to see some more supports available at UHW.
“When the endocrinologist comes to UHW it will hopefully make a big difference and save us going up to Crumlin,” she said.
“Adam was diagnosed as coeliac last December, but still hasn’t been called to see a dietitian so we went privately.”
Mena Fitzgerald also says there is a lack of staffing for diabetes care at UHW.
“They don’t have a dietician. We went to Crumlin two weeks ago for Theo’s first appointment about the insulin pump and they had two doctors, two nurses, a dietician, and a psychiatrist,” she said.
“It was amazing. That level of service isn’t available in Waterford. He got to speak to a psychologist for half an hour which was great. He really got a lot from that. It’s crazy that they can have that service in Dublin but we can’t have it here and that we have to drive two hours to get it.”
She added: “You couldn’t fault the nurses. They’re doing their best, but you are left to your own devices in some ways in terms of deciding numbers and figures, when to give insulin etc. It’s quite a big fear in case you get something wrong.”
Liz Murphy says there is a huge misunderstanding amongst the general public surrounding the differences between Type 1 and Type 2 diabetes.
“Personally I think they should call them different names, as Type 1 is such a different disease,” she said.
“People are not aware of the difference.”
This is something which the others agree with.
“I feel I have to defend myself every time I say Justin is a diabetic,” said Christina.
“People think ‘oh, she must have given him the wrong food.’”
This is something which Shelly has also encountered.
“I often get asked ‘was his diet bad?’ He finds that himself in school. People say ‘you got it because you had too many sweets’,” she explained.
“People say ‘Oh did he love sweets?’ There’s an idea that you’ve done something to cause this,” added Dawn.
Dr Anna Clarke of Diabetes Ireland says the current staffing level at UHW is not sufficient to cater for the amount of diabetics and needs “urgent attention”.
“UHW needs more staffing so that diabetics can be adequately treated and maintain their quality of life,” she said.
“Access to best diabetes care shouldn’t be based on your geographic location.”
She says carb counting courses, for example, are essential for Type 1 diabetics.
Diabetes Ireland continues to raise issues relating to UHW at political level and Dr Clarke says she hopes to see additional recruitment in the near future.