Starting School

[smaynard]

Hi, my daughter is starting school in September. She's 4 years old and was diagnosed with type 1 diabetes just over a year ago. We manage her diabetes with a pump and continuous blood sugar monitor. Keiki still, rather erratically, produces some of her own insulin and her additional insulin requirements can therefore vary quite considerably.

She sometimes recognises hypo symptoms, but not always. Clearly at 4 years old she can’t manage her diabetes with any degree of independence.

She starts school in September and I have a meeting scheduled with the school to discuss how her condition will be managed.

I would be very interested to hear from other parents of young children as to how their schools deal with things?

Many thanks.
Sarah

 

[Matt1212]

Our daughter is 5 and in the first year of school , she is treated via multi injections.
Around mid morning she would test her own bloods in class and the teacher has a quick look to make sure the reading is over 4.0
My wife would go in before lunch to give her the novarapid injection to cover her lunch , luckily she always seems to eat her lunch as no hypos at this time.

If our daughter seems distressed or quiet teacher would encourage her to test and if low lucozade etc is kept in the class , the school would then ring us to check what to do next

Glucagon is kept at the school just in case and some biscuit/lucozade just in case of hypo's.

Good luck in September
Matt

 

[smaynard]

Matt, thanks very much for your response.

My meeting with the school was, frankly, a disaster.

Their standpoint is that they will not accept her at the school unless she is statemented and receives funding for dedicated, full time support.

Apparently it is not their responsibility to obtain this funding, as she is not at their school. If she had been diagnosed whilst attending their school they'd of applied for it, but as she isn't it is my responsibility to obtain the funding and if she doesn't get it they are within their rights to say it is not safe for her to attend and therefore exclude her.....this is what they told me.

I was extremely shocked by this response and, of course, will be researching.

If anyone has any experience with statementing or getting additional funding for support at school I'd greatly appreciate hearing about it.

Many thanks.

 

[CarbsRok]

xyz

 

[Jen&Khaleb]

I've got to say that I'm having a great deal of difficulty with Khaleb at his daycare and Early Learning Centre. It seems that until kids get old enough to basically take care of their own diabetes the staff don't want to take responsibility and also wont spend enough time learning about diabetes and how it is managed. I'm in Australia so aren't a lot of help with your situation but I send my sympathy.

I just do most things myself and end up running back and forward for the few hours that he is in care. Sadly, Khaleb will most likely never self-manage so this could be going on for a long time.

Wish you all the best cutting the red tape.

 

[SophiaW]

I don't understand why they think she should be statemented? My daughter certainly isn't and I haven't heard of any other T1 that has been statemented because of their diabetes. She does not need dedicated full time support at school. But she does need teaching staff who are aware of her condition, what hypo signs to look out for and how to deal effectively with any hypos that do occur.

When my daughter was first diagnosed in the October she had only just turned 4 in the July and started in reception year that September so we are talking of a child of similar age. Jess was in no way independent with her diabetes, initially she didn't even know how to do the finger prick test herself and her hypo awarness was erratic. Our school managed just fine although we did have a lot of support and training offered to staff from myself and our diabetes specialist nurse.

I suspect that your school is showing fear of the unknown and this is why they're over reacting. Would it reassure them if your diabetes nurse could spend some time educating them about your daughters diabetes management and would it reassure them to talk to a headteacher at other schools who are coping well with a child who has T1 and who isn't statemented needing full time dedicated support?

 

[evie27]

Hi, My daughter Evie was diagnosed with type 1 on March 24th this year Evie is 8 years old.
Evie is the only child in her school with type 1 diabetes but Evie's nurses went to school and did a day training with all the staff and one teacher she could pick as her main person to go to.
They have been very good but at the minute Evie only has insulin injections at 7.30am and at 5pm which I do, not sure what would happen if she needs one at dinner time though in time to come.
School put posters up all around so everyone is aware.
Sarah (Evie's Mum)

 

[phoenix]

I suspect that your school is showing fear of the unknown and this is why they're over reacting. Would it reassure them if your diabetes nurse could spend some time educating them about your daughters diabetes management and would it reassure them to talk to a headteacher at other schools who are coping well with a child who has T1 and who isn't statemented needing full time dedicated support?

I'm sure this is the case. Schools have had children with diabetes for a long time but as most children were on 2 or not so long ago only one injection a day the only thing that teachers needed to know was when to allow snacks and what to do if the child had the symptoms of a hypo. Recent guidance (2005) doesn't envisage a case where such a young child would be on a pump.

The diabetes of the majority of children is controlled by injections of insulin each
day. Most younger children will be on a twice a day insulin regime of a longer acting
insulin and it is unlikely that these will need to be given during school hours, although
for those who do it may be necessary for an adult to administer the injection. Older
children may be on multiple injections and others may be controlled on an insulin pump.
Most children can manage their own injections, but if doses are required at school
supervision may be required, and also a suitable, private place to carry it out.
168. Increasingly, older children are taught to count their carbohydrate intake and adjust
their insulin accordingly. This means that they have a daily dose of long-acting insulin at
home, usually at bedtime; and then insulin with breakfast, lunch and the evening meal,
and before substantial snacks. The child is taught how much insulin to give with each
meal, depending on the amount of carbohydrate eaten. They may or may not need to
test blood sugar prior to the meal and to decide how much insulin to give. Diabetic
specialists would only implement this type of regime when they were confident that the
child was competent. The child is then responsible for the injections and the regime
would be set out in the individual health care plan http://publications.teachernet.gov.uk/eOrderingDownload/1448-2005DCL-ENv3final.pdf [/b].

The idea of a young child with a pump and cgms probably scares the life out of the head. Most people probably have never heard of either, and the whole concept of cannulas, tubes and buttons sounds extremely threatening. Teachers aren't medically trained, many don't even have a first aid certificate and they cannot be compelled to carry out anything that is a medical procedure.
They can volunteer, they must have training and clear guidelines. Personally I would have refused to take the responsibility of a child on a pump in the past. Now I use one myself, I would be less worried but I'd still think very seriously about it.
You did very much the right thing, contacting the school well in advance. The school feels it has a problem, they feel they would need trained support and/or training and to do this they need funding and medical advice. If they wait until the child is at school they will then have to wait ages until it is sorted out and in the meantime unsurprisingly feel thay they haven't the expertise to cope with her needs.
What I would have hoped was that the school would shown more sympathy and at the very least have given you a contact person within the LEA so that you could start things moving, to find ways to get the support in place before September . You should approach the LEA yourself, and also your diabetic clinic since your daughter is presumably not the only child on a pump in their area. I think Diabetes UK is also likely to be an important source of advice. There are probably very few children (as yet) that have started school wearing a pump but DUK might be to tell you what arrangements have been in other areas. There is in fact an account, giving details of training and support for children on pumps in leeds. This included someone going in to give full training to the staff and very clear guidelines on what to do and when to call in parents (eg for any necessary site changes... this is one aspect that worried me when I thought about it, because no way would I be prepared to do it)
http://www.diabetes.org.uk/Professi...a-injections-or-insulin-pump-therapy-Dec-08-/

Good luck,it must feel like one more big hurdle.

 

[SophiaW]

I must add that when Jess was first diagnosed she was on the Novomix 30 insulin which meant no injections during the school day. Last year we switched to basal/bolus and with Jess needing an injection at lunchtime I have been going into school each day to do that for her. Recently she has taken over doing the injection herself but I still go in to oversee that she is giving the correct dose etc. The last couple of weeks I've been handing over to the medical room staff however there is little for them to do apart from overseeing what she is doing. Jess knows how to do it all herself and calculate the correction dose if her readings are too high as I've provided her with a chart showing how much extra to give depending on how high her reading is. Jess has a packed lunch each day so I leave a note inside her lunchbox stating how much insulin she needs for that lunch. However, with your daughter on a pump, if she takes a packed lunch isn't it a simple matter of entering the pre-determined dose into the pump? I'm not familiar with a pump so not exactly sure what is involved. If need be could you pop into school at lunchtime to input the bolus dose into the pump until your daughter is old enough to do that herself, or a member of staff feels confident enough to do that for her? With this setup I still don't see why there is a need for statementing and full time staffing for your daughter's diabetes.

 

[Theunicornlady]

Right, having worked in education for 11 years I can tell you, the school want you to statement her because she is worth more funding for them. She does not require full time support, rather she just needs someone to administer her insulin and recognise when she may need help. At 4 years old you cannot expect her to self-administer. I know many schools request parents come in and do the jabs for their child. I've been lucky in so much my daughter was diagnosed at 10, and self-administered from day one. However, many parents here will tell you the traumas they have had on this issue. Right, lets now get technical.

Call the following people - the LEA School Nurse service for advice and guidance, your diabetes team, your MP if you feel its necessary, the schools admissions office and see if your second choice school is available, oh and finally call Ofsted. They will DESTROY the school under the "Every Child Matters" and "Safeguarding Children" agendas.

Diabetic children are covered by the disability discrimination act. This means they cannot be discriminated against because of their condition. We know how hard it is, but for teachers its another set of things they have to look at. In all fairness, I think the school are scared, but they need to embrace diabetes like most people do asthma - I'll be willing to bet there are kids at the school who require either inhalers or epi-pens and the staff are happy to do that. Whats the difference between injecting insulin and these other treatments?

HTH and good luck honey
xxx

 

[hismom]

hi,
can I say that I am disgusted with the schools attitude. I must admit that if their attitude is like this now I would be tempted to look for a school where they dont feel this way but along the way I do feel that I would report them for disabilty discrimination. it is too easy for schools to just wash their hands but I would say that it is part of their job to make sure the provision is there to keep your child safe at school. Your child should not need to be statemented at all. Ring the education department and also speak to your diabetic nurse and find out where you stand. Our diabetic nurse said that she visits the schools to make sure they have a trained member of staff that can help when needed.

steph

 

[lincoln8283]

My Daughter is Turning 3 & was Diagnosed of Type 1 Diabetes last December 2009. We've been managing her with Injecting Insulin. Can someone assist us with The Information of the Pump ? She's about to begin school - we are worried lot - can you PM me ?

Email address removed, this forum does not allow personal Email details on the board. Please use the forum PM system for private communications.

Sugarless Sue.
Forum Monitor.

 

[squishy157]

hi,

When i started primary school my mum went in at the end of every year and told my teachers the in's and out of what to do in case i had a hypo or if i felt " wobbly" as i used to say to my teachers and family
She would always make sure the school nurse/ teacher and class room assistant would also been taught how to do my blood glucose and also know the tell tale signs of a hypo

after the teachers knew about the condition and what to do there wasn't a fault i could say about my primary school

hope this helped x

 

[smaynard]

Hello everyone. Firstly thanks very much for all your replies and my apologies for the long delay in responding. I want to give a full update on how discussions with the school progressed.

After the initial meeting with school I did a lot of research including speaking with the advocacy team at Diabetes UK (who were EXTREMELY helpful) and contacting my area SENCO.

From this research I concluded that statementing was not the appropriate route for our daughter, however, it was also clear that I agreed with the schools standpoint that they needed additional support. The state primary school standard staffing ratio is 1 to 30 in morning sessions and 1 to 15 in afternoon sessions. Our daughter’s nursery school has a staffing ratio of 1 to 6 and they had been really struggling to manage the additional needs of the pump.

I should comment, for those of you not familiar with pumps and continuous blood sugar monitors, that whilst it enables us to manage our daughter's condition FAR more effectively than our experiences of injection therapy, the demands of this technology are significant. It is not a simple matter of pushing a few buttons when she eats.

I therefore wrote to the school acknowledging their concerns that our daughter needed additional support but stating very firmly that I considered it was the schools responsibility to lead the charge in identifying how we were going to address this requirement and who was going to fund it. I said I did not consider statementing to be the appropriate route. I was very clear that I would do all I could to assist with identifying how our daughter could best be supported but that we needed to work collaboratively and creatively. I also stated I did not accept that our daughter’s school place could be in jeopardy due to her condition. The school responded positively.

The Area SENCO agreed that he considered our daughter needed additional support and proposed that we should apply to the Joint Funding Committee to obtain funding for that support. This committee meets on a monthly basis and makes immediate decisions (unlike statementing which I understand typically takes at least 6 months).

The school, nursery school, diabetes nurse, community health team and I worked together to put together the case for the committee to consider. Our case requested funding for full time dedicated support and I am relieved and delighted to say we were successful.

Clearly my daughter does not require (and indeed we would not want) someone sitting right next to her monitoring her for the duration of her school day. However, what she does need is someone that can attend to her at a drop of a hat without disrupting normal schooling and who is comprehensively trained in diabetes/the pump/CGMS. What has therefore been agreed is that the school will receive funding for an additional classroom assistant who will be dedicated to our daughter but who will also be an additional resource to the class as and when that is appropriate.

I consider this to be an excellent outcome for us, the school and, I hope, a sound precedent for others.

 

[redrevis]

Just seen this. That is great news. Sounds like you did everything properly and were successful in getting the help required with her educational and health needs. Isn't it great when hard work pays off and praise goes to the support groups available when needed.
Through my daily Diabetes related internet searching i found a great document which was made by the parents of a little girl with a pump. It was made specifically to give to the school to help staff, other children etc learn about Diabetes and what is required for their daughter whilst at school. I've put a link for this and a few other resources i've come across for you to have a look at.
Insulin Pump
One Page Guide
Supply Teacher Info Sheet
Children with Diabetes at School

 

[smaynard]

Thank you very much for your kind feedback and for attaching the useful links. I totally agree that it's great when hard work pays off and it is indeed a great result. However, it is a shame that individuals have to drive these processes and work so hard to get the best treatment and support...these things appear very random to me and that's hard to reconcile.

 

[pebbles22]

hi there

My son starts school in sept as well and have had a meeting with the school, and they have been brilliant, he has a designated nursery nurse who will test his sugars and make sure he has his snacks. several staff at the school have received training from the local paed diabetes nurse in testing his sugar. They have drawn up a care plan with me and my son, and I will be having another meeting at home a few days before he starts. Your situation sounds horrendous, you need to complain and involve as many people as you can to offer support. The school have to look after your child and it is up to them to arrange any training they may need, and to devise a care plan.

good luck

 

[sugar2]

fantastic news! i am shocked however how times have changed since teh stone age when i went to school, aged 4 as a type 1 diabetic. I got no additional care what so ever...except that when Maggie Thatcher milk snatcher snatched teh milk from school kids, teh school paid for me to keep having milk.

I guess this reflects that although diabetes care has improved so much in teh past 34 years, it has got more complicated...in my day (1976!) it was do injection..if you feel odd, eat sweets..which I could manage OK, as long as the scholl bully didn't pinch said sweets! there was no blood testing back then,,and I suspect my Bg would have been quite high most of the time...so things have definately imporoved. this is the side effect of that improvement...and well done for getting such a good result!