Nicky's story: the importance of school support for kids with diabetes

• Oli was diagnosed 8 years ago when he was in primary school.
• Oli went back to school a week after his diagnosis, which was a concern for Nicky.
• She found that the school helped Oli a lot and was very supportive of his diabetes.
• She joined our campaign to help children with type 1 across Wales get the same level of care that Oli has.

Learning a new 'normal'

Following Oli’s diagnosis, he had 4 days at home before returning to school. During this time our pedriatic diabetes specialist nurse (PDSN) was able to go into school and provide a training session for staff who were involved in Oli’s day to day schooling and care. 

Expecting to work with five or six members of staff, the PDSN was amazed that the whole staff team, including lunchtime supervisors and the school cook all were present. This was our first indication of the level of support and diligence that the school were to provide over the coming years.

Whilst he had been at home, we had been getting to grips with our new normal. Learning how to apply the principles of carb counting, dealing with our first hypo, the concomitant perils of exercise and sitting still, and correcting high blood glucose levels without sending our (suddenly distinctly mortal) 5 year old crashing back into hypo. 

The following Monday, I remember Oli being excited to go back to school. I think he felt like a walking, talking show and tell. So many gadgets and important things to explain and definitely most momentous of all, a packet of jelly babies and a box of digestive biscuits which he was allowed to eat in class. I was less excited.

I had cared for (and by some miracle kept alive) a child with Type 1 diabetes for a little over a week. I was about to hand over that very same child to a group of people who had had a two hour instruction course and no practical experience. Then I was to sit and wait and hope that he was handed back to me safely at the end of the day. 

It is really hard to explain to anyone who has not gone through this how terrifying this process is. Not just on the first day your T1 child returns to school, but every single day after and forever. It’s intensive enough trying to keep a five year old’s blood glucose in range when he is one of two in your care – the impossibility of managing this when said five year old is one of twenty-five in a class was not lost on me.

Would they remember to do his fingerpricks at the right time? Who would notice if he went the funny putty colour that signalled a hypo. Would they have rung for an ambulance by the end of the day? I sat at home, catastrophised and dreamt up these and a thousand other worries.

For the first week I went into school every lunchtime to carb count his school dinner (and reassure myself that everything was ok). By the second week I had returned to work myself feeling content that Oli’s classroom teacher and teaching assistant were vigilant, competent and would ring me if they had any concerns.

Setbacks

I would be lying if I were to say that we never had any problems. Occasionally there were issues, but I tried to remind myself that the school staff were just as inexperienced as we were in the initial weeks following diagnosis. On one memorable occasion there had been an upset in the classroom just before break which Oli gleefully reported to me when I collected him. “I hope you didn’t join in?” I said “Of course not,” Oli replied.

My parental smugness was cut short as he went on, “It was when I was in the cupboard eating my biscuit”! With a robust healthy eating policy, it had had been decided that the best way to deal with Oli’s mid-morning snack was to shut him in the cupboard so that the contraband digestive was not spotted by the other children!  With open and honest dialogue, this and other minor issues that occurred were soon resolved.

We have been extremely lucky, and I am under no illusion that without such a compassionate, dedicated and reflective team of school staff, our experience would have been very different. Oli has taken part in every activity, residential and experience he wished to; including a three day trip to Cardiff and a weekend at an outdoor centre. I know that school staff have gone above and beyond in their care for him, over the years taking responsibility for injections, set-changes, carb-counting and night checks to allow Oli to have exactly the same experiences and opportunities as his peers, without the ignominy of having his parents in tow.

Moving schools

When Oli moved up to high school we continued to benefit from similar support. Practical education was once again provided by our DSN and a named member of staff with particular interest in type 1 provided a safety net, with whom Oli could check in whenever he needed. This gave him a sense of continuity can be lacking in the early days of high school life. Now aged thirteen, Oli rarely needs help from staff at school, but they continue to provide support in the background, rather like a watchful pit-stop crew.  

He continues to take part in many aspects of school life, including school visits and residentials, and in 2020 will be spending five days in New York with 60 other students. None of this would be possible without the support and commitment of his teachers and the continued involvement of his DSN.

The campaign for better care

I am aware that we have been tremendously lucky.  All over Wales, there are parents and children who have not had similar support; parents who have had to resign from work, such is the demand placed upon them by school-staff to be ever-available; children who are routinely excluded from activities and residentials due to perceived risk. The list goes on and on.
 
The Addition Learning Needs bill will ensure standardisation of care and provision in schools, not only for children with type 1 Diabetes, but for all children with additional learning needs. It will provide schools with clear and unambiguous guidance that must be met.  I sincerely hope that once this bill is passed, every child in Wales will experience the safe, supported and inclusive school environment experienced by Oli, with the same access to opportunities as every one of their peers.