By Adrienne Burton
This is a scary time for parents of children with a chronic, hard to manage, medical condition, whatever that condition may be.
It is no different for parents of children with Congenital Hyperinsulinism, whatever form or type they may have. Some of the children need intensive one to one help at school and some need less intrusion. Whatever the type of care needed, one thing can be sure and that is that help, care and assistance is needed and it is not always as forthcoming as it should be.
A bit of my background : Jessica is now 15 years old (2015). She became insulin dependent after her pancreas was removed at a month or so old at Great Ormond Street Hospital. Her full story is found here.
We have therefore been through pre-school, reception, primary school and almost finishing secondary school. We have that t-shirt and it has been no picnic but we have managed it. That is what it is all about really, managing. This is from managing the school, other parents, other children, food, blood glucose testing (BG), insulin injections, PE, food tasting days…….. the list goes on.
With CHI needs vary greatly from child to child as the condition itself throws up different issues with each person. My daughter is insulin dependent which adds another layer to the CHI ie having to give and monitor insulin which is potentially a deadly medication if not managed correctly. Other children with CHI can have different medication from diazoxide which has one visual side effect of extra hair growth on noticeable areas of the body ie face, arms etc. There are now other medications as well which you can read about here
“Blood sugar testing”
However the common point for all children with CHI is blood sugar testing. This is a given and the majority of children need to have their BG’s (blood glucose) tested at school and generally be monitored, watched sometimes from a distances and sometimes not, each child with CHI is different.
We have supplied here examples of instructions, plans, emergency sheets that we have used in nursery, primary and secondary school settings. These are literally a guide and an idea if you do not know where to start. They worked for us and others have used them and adapted them accordingly. Your hospital team may well have their own care plan you can use or may have to use and you can of course adapt that.
- Example Care Plan – Full
- Example Daily Plan
- Example Hypo Emergency Flow Chart
- Example Nursery Info
- Example Nursery snack time info
- Example of recording BG at school
- Example poster for offices with photo
- Example Red Alert cards
- Example school box contents
Here are a few tips that I and other parents have learnt along the way and what has worked for all of us :
- Always be friendly to the school. Make it an ‘us’ situation rather than a ‘them and us’. I have always said to the schools this is what works for my daughter at home so this is what is needed at school how can we make this work ie ‘we’ not ‘you’. Schools are far more receptive to calm and friendly requests and would rather work as a team. I always ask for a copy of the time table or at least the break and lunch times and try and work my daughter’s regime around the school day so that she can be with her friends and not ‘different’.
- In primary school it is the head teacher who you may be dealing with and it is perfectly ok to contact the head teacher and ask for meetings. We ended up having monthly meetings for a while so that the head could hear any concerns we had or indeed anything that was working well. Likewise the head could then let me know if anything was changing ie times of break etc or food events so that we could plan and prepare.
- If your child is getting 1:1 support it is always a good idea to suggest having a few members of staff trained up. We had two part time TA’s who were both trained to look after my daughter in reception until year 6. We thought this was a good idea in case of illness etc and the other one could step in. I was number three in case both were off. This was rare. Many parents cannot be number three so two staff members trained up is really the minimum.
- In secondary school it is generally not the head teacher you deal with but the head of year, pastoral staff member or SENCO. Always make sure you have a constant contact who you can build a relationship with throughout the duration your child is at school. Ask who you should be your contact from the outset.
- Always involve and ask your specialist hospital team for advice on training school staff and arrange training sessions, preferably a few shorter ones rather than one long one as it is such a lot for staff to take in. If you try and remember back to when we, as parents, were learning. The school staff are learning from new. They will make mistakes, we make mistakes so try and be understanding and friendly so that you can build up a rapport with the staff looking after your child. It is always harder with someone else’s child.
- Your child will need a care plan in place. Your hospital team should be able to help you with this. Some teams have care plan templates they or you can use. Ask them but with plenty of time in advance. You may need to rewrite bits so it is relevant to your child and normally the hospital, the school and the parents need to sign it.
- In secondary school when your child is more independent (it will happen and is scary for the parents but take it day by day and talk to others for support) it is a good idea for them to carry with them as part of their kit along with the test kit and hypo treatment, small (half the same of A5) laminated sheets, held together with a treasury tag to include : daily plan, info sheet with photo, PE plan, Emergency hypo info, emergency hyper info and emergency contact info. Just minimise the plans within the main care plan and use those.
- In secondary school and possibly year 5 and 6 of primary school having a credit card sized laminated card in red is a good idea to be able to hold us in class or produce to a teacher stating something along the lines of :
“Please listen to me I need to either say something or do something regarding my diabetes”
and perhaps on the other side :
“I have staff authority to use my mobile phone regarding my diabetes only during school hours in and outside the school building.”
Obviously it has to be clear that the mobile phone is regarding diabetes so if there are any texts home during a lesson, the teacher is within their rights to ask to see it and make sure it is about diabetes. Also the phone may have apps on it which can help ie Carbs and Cals if counting carbs at lunch time or Mumoactive if recording blood glucose levels.
- Make sure there is a ‘hypo’ bag near your child at school and supplies dotted around the school. From reception to year 4 the 1:1 carried a bag for Jessica and in year 5 and year 6 Jessica carried her own. We supplied a small black across body handbag and in it we had :
- Test kit
- Spare test strips
- Lucozade / coke (your hypo treatment)
- Copy of emergency plans
- List of emergency phone numbers
- Mobile phone
We provided a cheap mobile phone (pay as you go) purely for any emergencies. It was hardly used but the school were happy with this scenario. It was then easy for the 1:1 to phone me wherever she was and did not need to leave Jessica to find a phone.
- We have a big box of supplies with lid in the class room at primary school and also in secondary school. This has the contents listed on the lid and the 1:1 or school are responsible for keeping a check on whether it needs stocking up. If possible it’s a good idea to have smaller boxes in the sports hall, the medical room or anywhere else around the school grounds.
- Have one A4 sheet with a clear up to date photo of your child on it and their name and year and class details and a brief summary of the condition and perhaps a list of hypo symptoms that could be relevant and emergency contact numbers. This could then be laminated and few around the school. The teacher may like one stuck to his/her desk, there should be one in the staff room, school office and perhaps one in the kitchens.
- If you have spoken to the school about any issues or changes to care plan etc it is always a good idea to send an email confirming it, that way there is a clear instruction with no room for interpretation and a paper trail which is good for yourself and the school.