Type 1 diabetes: Parents describe fight for school care

Parents of children with type 1 diabetes say they struggle to get their child adequate care at school.

One mother said caring for her seven-year-old was “ridiculously intensive” for school staff, but the process for ensuring one-on-one care was unclear.

A man whose son has a designated tutor at school said it changed his life.

Diabetes UK said some children received excellent support but many struggled to participate fully in school life.

Six-year-old Toby was diagnosed with the disease when he was 18 months old.

“Ever since he was diagnosed I have constantly fought to get the care he needs,” said his mother Zoe, from Cardiff.

She said a teaching assistant (TA) at his school was trained to care for him, which includes monitoring his insulin pump throughout the day, checking his blood sugar levels through a sensor he wears, and checking himself each time when he eats, prick his finger and manually enter his blood sugar level into his pump and watch for hypoglycemia (low blood sugar) and hyperglycemia (high blood sugar) that can make him limp or his behavior challenging.

She said the TA is “brilliant with him” but has to look after him alongside her other responsibilities to the rest of the class – something she feels is not appropriate.

“He needs proper care,” she said.

“I keep getting called to school to change [his pump]watch it and take care of it.”

Zoe has been told that the TA who has been responsible for Toby’s care for the past two years will no longer be available after September and the school has applied to the School Board for funding for one to one care at the school.

“I’ve been told that’s not a guarantee. It’s really difficult at the local government to get any help for him at all,” she said.

Zoe is only too aware of the dangers of her child’s condition. Just before the diagnosis was made, he was very unwell and in a diabetic coma.

“His condition is life-threatening,” she said.

Cardiff City Council said the health, well-being and safety of students is a priority and there are established procedures for schools to seek advice, training and additional resources to ensure learners are safe at school and theirs health needs are met.

Nine-year-old Blyth was diagnosed with type 1 diabetes five years ago and has had one-on-one care from the same person at school for over four years.

His father, Chay, from Vale of Glamorgan, said he felt very fortunate with the care his son was receiving but it had been a challenge getting it.

He said he was initially told that he or his wife would need to come to the school for care, leading him to arm himself with the right information about what the school should be offering.

Blyth’s pediatric diabetes team provided a letter stating Blyth could not take care of his condition himself and needed a responsible adult to monitor him constantly at school, and this was part of the school’s successful application on individual support from the council.

“Because of the one-on-one support he gets, he’s just totally normal, his schooling is normal, everything is a positive school experience and he’s no different from any other kid,” Chay said.

He said Blyth was recently able to go on a three-day residential trip with both his day and night care fulfilled.

He said that having the same person take care of him during Blyth’s school days helped him immensely.

“She knows him perfectly, she’s just so attuned to him, and she’s a necessary part of his schooling…a big part of his life,” he said.

“I know some people fight, and I know they have this fight that they shouldn’t have.”

Chay said he would like to see the rights of children with type 1 diabetes much clearer.

Sandra’s seven-year-old son, Joe, was diagnosed with the disease in March.

A number of staff at Joe’s school in Powys have been trained to manage his diabetes, but Sandra said she would love for the school to have someone with the sole responsibility of managing his care.

Upon hearing about the one-on-one support Blyth is receiving at his school, she said, “I’m quite emotional when I hear that.”

At Joe’s school, whenever he needs insulin, the principal, his class teacher, or a teaching assistant takes him out of class to get it and uses a phone app to calculate how much to give him.

“When his alarm goes off, they have to respond and he might go off every five minutes for an hour… I feel a constant sense of guilt about the school and just thinking about all the kids who are losing out because of the intensity of the support needed around him.” manage,” she said.

“I see how hard it is for employees … there is a lot of anxiety and a lot of learning that employees have had to manage.

“Almost everyone at school has completed the training, which I’m blown away by, but it’s still ridiculously intense for them.”

Attempts to obtain community funding for Joe’s one-on-one care have not yet begun.

“You’re so overwhelmed that there’s no way it’s on your agenda…you only manage to stay up 24 hours and get Joe’s blood sugars stabilized,” Sandra said.

She said she wishes her child could have one-on-one support “without having to go through a process where you’re fighting for something.”

She said she spoke to Joe’s principal about starting the process, adding: “You [the head teacher] said it had to go to a panel…why do we have to justify it to a panel? You know, it’s pretty simple… that’s a very simple diagnosis.”

She said much of the process for getting additional help is still a mystery to her.

“Who does that? I dont know. Is it me? is it the head Can they? [the school] going through that? At the moment there are eight teachers who are sick.”

She believes the responsibility for ensuring adequate supplies should lie with the council, rather than relying on parents and schools, which are already overwhelmed, to fight to make it happen.

“I just asked [the head teacher]: ‘Have you ever been contacted by the local council because you have a child with type 1 diabetes at your school?’ She said, “Never”.

“It was nothing and I’m overwhelmed by it, overwhelmed.”

“If I wasn’t a proactive mother, for whatever reason, it would be detrimental to my son’s health.”

Powys County Council said it could not comment on individual cases, but all its schools are aware of the procedures to contact the council for additional support and guidance.

“All schools in Powys follow the Welsh Government’s legal guidelines – support for learners with health needs,” she added.

The Equality Act 2010 legally defines children with diabetes as people with a disability. As a result, educational institutions and the NHS must ensure that students with diabetes are not disadvantaged.

The Welsh Government said parents should inform their school of their child’s health needs and the school should discuss with them whether an Individual Health Needs Plan (IHP) may be required.

An IHP establishes what is required to support a learner with health needs and is essential for learners with complex, fluctuating, or long-term health needs.

The Additional Learning Needs Education Tribunal (Wales) Act 2018 sets out how children and young people under the age of 25 with additional learning needs should be supported.

Danni Quinn, who has a son with the condition and has run the T1 Children – Rights at School Facebook group for over 10 years, said she advises parents unhappy with their child’s support at school to do an assessment for an individual Development Plan (IDP) in Wales, an Education, Health and Care Plan (EHCP) in England and a Coordinated Support Plan (CSP) in Scotland.

“It’s often up to the parents and teachers to stand up for that child and justify what support that child needs…Children in elementary school generally need one-on-one support, certainly in the first few years after diagnosis,” , explained Dr. Robert French, Senior Research Fellow at Cardiff University School of Medicine.

dr French said the level of support children with the condition receive at school is “inconsistent” across Wales.

“We have had reports from parents that they really had to fight to get the support their child needs in school,” he said.

“I think in most cases, one-on-one support for key phase one of the early years is probably essential.

“We have to listen to parents and it shouldn’t be a question of resources or what this school can do. I think it should be based on the needs of the child as designed by the Additional Learning Needs Act.

“There are many examples of fantastic care across Wales and I think it’s just about making sure that’s always the case.”

dr French is the lead author of a recent study that found that children with type 1 diabetes miss an average of nine more school hours (half days) per year than children without diabetes.

The study, published in the Journal for Diabetes Care, also found that while many children with diabetes were still performing well in their education both at age 16 and in college, those who were struggling to control their blood sugar levels did so at five Grades scored lower in GCSEs than children without the condition and were also less than half as likely to attend college.

He hopes that new immunotherapy drugs that delay the development of type 1 diabetes could give young children “a chance to get through part of their school years and get diabetes when they’re a little more mature and a little more sedentary.”

There were around 1,400 children and young people with type 1 diabetes in Wales, according to Charity Diabetes UK.

It regularly hears from parents who have had to attend school to support their child, and in some cases children have been unable to attend school for long periods.

The Welsh Government said its guidance on supporting learners with health needs provides both statutory and non-statutory advice to help local authorities, governing bodies, educational institutions, education and health professionals and other organizations to support learners and their education as little as possible to hold as possible.

It added: “Legal guidance requires local authorities and educational institutions in Wales to have a healthcare needs policy designed to ensure students with all medical conditions, including diabetes, are adequately supported.”