5yr old Type 1's school refusing BG/injections HELP

[Mummytolewis]

Hi everyone, I cannot emphasise how much our family is desperate at the moment and would greatly appreciate any advice or guidance you can give us. On Nov 26th this year our 5 yr old son was diagnosed with Type 1 and admitted to hospital. We also have a 2 1/2 yr old and a 19 month old and I am 37 weeks pregnant with our 4th. The hospital informed his school in Edinburgh on Nov 27th of his diagnosis and the Head teacher asked if injections would need to be given. They confirmed it would. He is the only child with diabetes in the school. Our next school contact was on Tue 3rd Dec at a mtg with the deputy Head, class teacher and 2 ladies from the school office along with the hospital diabetic nurse. All seemed on board and 2 people volunteered and received training that day on BG testing and injections. We were informed the school would ask for more volunteers. However the Head teacher was not at the meeting. We then heard nothing about a return date to school. On Thursday 5th Dec we asked could our son return. The Head agreed but only if we go in to do everything saying staff are now scared of killing him. One volunteer has now withdrawn and the other is never available. My husband has had to get a sick note from the GP in order to attend school and do the BG tests and injection. Up to 5 times a day. Also he is shown into a conference room. I have spoken to the Head who admits there is a fear factor running through the school, she continually mentions 2 other schools who have in her words "refused to inject" and states they've no legal responsibility to do any of this. I do know the legal position is that staff cannot be forced to do this however a couple of years ago a pupil in the nursery dept needed BG taken and the school accommodated this. This Head teacher was not Head at that time. The current Head says she will advertise externally for a specific position to do BG/insulin but for us it's crazy to rely on one potential person. Also the Head says "I'm willing" but has not been in touch to receive training. Their excuses change day to day. Where do we go from here? We do not want to move him school but as well as digesting his new diagnosis, trying to train family for when I go imminently into hospital to give birth, we are at breaking point trying to hold it together. How do we function and attend school until this magical date in the future when they my find someone? In 3 weeks we will have a newborn. Thanks in advance for reading this and any wisdom

 

[donnellysdogs]

Speak to your diabetic nurse straight away.. See if she can liaise with the school.

 

[Mummytolewis]

Thank you. We have done and she is astounded after the meeting, she has phoned them to try and ease their worries but to no avail. I'm thinking of phoning GP today and perhaps our health visitor to emphasise the strain on our family?

 

[donnellysdogs]

I would definitely be contacting those two people. Effectively in the situation you are in the school are excluding your child because of a disibilty or if at school they are not capable or willing to ensure your childs health is looked after.

I would also consider contacting your MP. This situation for you will also be having an impact on your and your babys health so they should be doing more.

Incidentally, ate you claiming carers allowance for your child, as this may be of valuable help financially if you have to adjust your life's to attend school etc..

 

[phoenix]

This is a horrid situation for you, it will get sorted in the end but may take time, though this is obviously a difficult time for you. What you do need to get is the best possible care plan in place, so that you can have confidence in what is going on at school and they also have to be confident that they can cope.

I have late onset T1 so now I inject myself so now would probably agree to inject and test a child's glucose but my non diabetic former self wouldn't have done. It would have been from ignorance and for much the same reasons as the head teacher is giving. (ie fear of hurting the child and also also fear of litigation. Not so long ago 'they' ie LEAS were telling schools not to do anything but clean a wound with plain water; no other intervention allowed by non health care professionals).
Schools have had always had diabetic pupils, the first one I had was on teaching practice in the early 1970s. Many teachers will have had a diabetic child in their class and have had to prepared to deal with hypos, snacks before PE but not much more. What is recent is the use of insulin regimes that require injections during the day. They may well wonder why it is now necessary to do this.

What I think might have helped my former self to gain 'courage' would have been to talk to others who have experience of injecting/glucose monitoring in a school setting ie not the nurse but ordinary teachers or TAs . There are schools that cope successfully. It might be worth asking your nurse if she could get some people from a successful school to visit your son's school and relate their experiences.
I think that it is worth contacting diabetes UK and asking for their advice. This type of situation comes up very frequently and they may have some useful suggestions.
http://www.diabetes.org.uk/careline

 

[MrsDMiles]

Hello
What a position this leaves you in.. On Facebook there is a group called type1 children rights at school. It's really worth checking out. Lots of info from people who have been in the same position. Also..diabetic Mums
My little boy was diagnosed in feb and I had my daughter 4 weeks later xx


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[MrsDMiles]

Ps new laws are coming in next year and they have to do it by law.


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[ciaramoh]

I was diagnosed at 4 and I'm 18 now. When I wasn't at an age where I could take responsibility for my own diabetes my diabetic nurse went into my school spoke my teachers through it. Also my mum and nurse made care plan booklets that explained everything

Really hope things get sorted

 

[Hobs]

Check this link out and see if it can be of any help to you
http://www.jdrf.org.uk/life-with-type-1 ... tAodaDAA2Q

 

[Shell1]

Hi,my daughters school won't inject either they just twist the insulin to the right amount then they hold her skin up on her arm and she injects she just turned 9 .shes ok now but wen diagnosed at 8 it was very scary for her to do in school.with work situation my nurse suggest to claim dla to help with all the time unpaid you need to take off work for illness hospital appointments etc and legally you are entitled to time off as a parent unpaid I think is 18 weeks a year if needed!


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[DonnaC-T]

I work in a school, and I'll be honest this is utterly ridiculous. I would contact the chair of governors with a written conplaint then Ofsted and the education authority. You have done everything you should with regards training/ contact etc.
Good luck x

 

[apples-mum]

Hi, what an awful time you're all having! My daughter was dx'd this year, she's 12 and has always injected herself, however her school kicked off and refused to let her carry her meter or do a blood test whenever she needed. Our dsn was livid and told me to threaten the school with discrimination under the children's disability act...it worked Get everyone you can involved, dsn, gp, education authority, mp, newspaper. Thankfully the law is changing next year and a care package for every child who needs one will have to be in place and followed. Good luck and keep fighting xx

 

[Mummytolewis]

I'm so grateful to everyone's replies and advice. Yesterday we got in touch withour local councillor who seemed to move things on a bit. The Head teacher made a suggestion (which I wasn't happy about) but we felt so desperate and that there was no other choice. She suggested that 6 learning assisitants watch whilst my husband gave Lewis his BG test & insulin and then they could decide if they wanted to do it. I was too emotional and felt she is treating him like a specimen not a child. My husband explained that it was intimidating for our son but thankfully 3 assistants have come forward today and agreed from January to do both. I feel my son has been rejected by the other 3 and instead of watching it "live" they could've easily watched a video. I'll be giving feedback on this when I've calmed down. For the rest of term my husband or I need to attend at the school for all BG/insulin plus do a handover at the start of term. What a journey. Is it true that laws for next year will make it compulsory in contracts to administer insulin?

 

[Jenn1f3r]

morning. this is utterly ridiculous!! when i started school in 1993 i was the first child with diabetes in my school (in linlithgow) and at the time my only problem was my teacher would give the rest of the class smarties before the end of term adn not me - ot a huge problem in the grand scheme of things.
have your doctors suggested insulitard for your sons background insulin? this has a 'peak' after around 4 hours of injecting so if you inject with breakfast at around 8, say then it would begin to peak at around 12 and co-incide with lunchtime and potentially reduce the need for a lunchtime injection? i know this doesnt get around the problem of teachers unwilling to inject but if you could do a sugar check then it might help?

hope all gets resolved soon!

 

[CambridgeLass]

So sorry you are having so much trouble & stress!! Echo above comments. Write letters (rather than verbal) to chair if governors, contact MP, etc. emphasise they are discriminating your child by excluding him. They should make every effort possible to find someone and have training. There should be a healthcare plan in place they should adhere too, your DSN can help with this. There have been legal cases won where a T1 has been excluded from trips etc. After a long battle, yes the law will change from sometime next year, not sure from when. Here is the link: http://www.diabetes.org.uk/About_us/New ... lth-needs/

So you may want to put this in your letter as they not be aware they HAVE to do this and governors have a responsibility to make sure they school are doing it. It's been bit and miss at some schools. Some parents have simply upped and moved schools. The FB T1 rights at school page mentioned is very good as parents have been in this situation. You can claim disability allowance for your son and carers if eligible 3 months after a diagnosis, so don't go worrying about that now. You've got enough on your plate!!


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[BobCornelius]

Have you explored the insulin pump route?



Bob

 

[donnellysdogs]

Insulin pump requires even more help from school. My friends child tests her bloodevery two hours at school, she has worry when her daughter goes seimming and is detached from the pump and some personnel have forgotten to do things on the pump....
There is no easy option unless the school co-operate...

 

[Mummytolewis]

Just wanted to update since everyone had given us great advice and support over our experience with our son's school. Since he returned after the Christmas break it appears the school are far more on board and have trained 6 people. Lewis is now doing BG testing himself in the presence of a learning assistant at the back of the classroom and a daily log book has been set up for us as parents to receive readings etc. my husband has been going in this week to supervise injection but fingers crossed next week we can drop our son off in the morning and collect him "as normal" at the end of the day. We also had our baby on Dec 29th, a girl named Holly so we are hoping 2014 brings more positivity! Thanks again.

 

[andiej]

Hi What a nightmare you have enough on your plate without the school being unsupportive my 10 year old son was diagnosed on xmas eve he went back to school in january at the moment my husband leaves work to give the injection at lunch time but our diabetic team told us that the school have a duty of care and if my son can't do them himself in a couple of months they should ask a teaching assistant if they would be happy to do it, there is no obligation for the TA to do it BUT if she says no the school MUST employ someone who will. Push for this and let us know how you get on.

 

[scotishchic]

Hi sorry u have had as much trouble with ur school my daughter was diagnose 1week before starting school but I must say they were very helpfully the school first adder monitored her for us although I must say Emma wanted to do all the testing and injections on her own apparently we hurt her to much and she was only 5at the time it may help if he could do that bit on his own and the teachers or how ever was helping would check that the number was right and I wrote everything down in the monitoring book and they check the amount right on the pen and they call if they are worried about any thing which I would prefer they did any way the odd time I had to go down but all her hypo things are with her and the school has spares so I can talk them through any problems over the phone not sure if this will help u but the school dose have a duty of care and it might just take them a little time to get used to the situation it a scary thought having to inject a child that not yours or when u did it your self the first time my husband cried , Hope all get sorted