To think this is terrible

[Edenviolet]

For months and months I have been trying to arrange getting everything in place for dd2 starting reception as she has medical needs.

I have written to the school, sent in info packs, emailed and phoned. We have had a meeting and dds pre school have met with them to explain dds needs etc. they also did a learning journey and that contained info showing what learning stages dd is at and she is doing really well. Her problems are medical not learning related.
School have been reluctant to have training before she starts and I feel like I'm pestering them but I need to get it done.

They've kept refusing and instead sent me a transition book designed for children with SEN, I explained to them this was not relevant to dd yet they sent more info regarding transition for children with ASD. I don't understand why they are not listening to me and sending things for the wrong conditions.

Get in touch with Imogen Jolley at Maxwell Gillott now. I've heard she's had success getting statements for children with diabetes.

Could you go down a slightly different track and talk to the person at the council who deals with children not being in school?

Say that you are worried you will have to keep your dd at home because the school do not appear to be willing to do the training that will enable your dd to stay alive at school and - quite reasonably - you do not want to send your dd to school if there is a high chance that the teachers do not know what to do if she has a problem...

And add to that, that you want to know what code to tell the school to use if you have to keep your dd off school because you do not trust them to keep her safe and alive, and that they have given no indication of understanding the seriousness of the situation. That you want to send her to school - but that if they carry on as they have been doing up to now - and they can't guarantee her safety, then you can't send her to school.

Unfortunately it seems sometimes that schools worry more about absentee rates than special needs and medical needs - which means that you need to be creative in who you pull in to help get your message across to school!

Good luck. There are dc at ds's school that have EDS - infant school some teachers got it while others didn't, junior school have been really fab at knowing what's what, so there is hope on that front! (I know that doesn't sound like your primary concern at the moment but hopefully it might ease one of your worries)

I think realistically you do have to wait til staff are back at school in September. many reception kids are staggered entry anyway or half days the first few weeks.
You may. Strike lucky with the one to one and it is someone with experience. And /or a lot of common sense.

It is fine to say she can't go full time until they trained but it does make a lot of sense for them to have her there and get direct training relevant to her specific needs especially if she has additional needs on top of diabetes...

She hasn't started at the school yet so it is a bit soon to go all out guns blazing... The fact they have agreed and organised a one to one is a big deal already.be prepared for first week or so you wil need to be on hand..

EES (Education Entitlement Service) in the LA deal with attendance and this sort of issue but she is not statutory school age until she turns 5 in November

Obviously I have to wait till after hols now but I was calling them in April/may/June trying to get this arranged. There were two hospital days where staff from school went on training but the school then said neither of these members of staff will be working with dd at all.
They have agreed to do a half day 'refresher ' of the June training but are sending a different two members of staff (and moaning about the cost and inconvenience) but they will not have been on the days in June so will probably be a bit lost as missed out on two full days of insulin pump training, hypo management etc

Will phone the person mentioned above in case they can help , maxwell Gillette helped me with my eldest dd to pursue a judicial review after she was not given a place at our first choice school (she also has medical needs) Thankyou

Have you been in touch with Continuing Care / Continuing Health Team?

They do the training for children in school - the staff don't need to go elsewhere as it's done on-site and it's a service level agreement so school don't pay.
I know 100% that locally continuing care train schools on insulin pumps and set up the care plans, even for children who are not hypo aware...

Health have passed you and school from pillar to post a bit. Training on site for a school is so much better as the practitioner delivering the training can see exactly how it can work and adapt their advice / care plan.

Continuing care will be working through the summer - give them a call - they might be able to sort something out for early September.

Seriously, you do need to try again to get a statement - or rather an Education, Health and Care Plan assuming this happens after September. The real issue is funding, and you have no guarantee that funding will continue to be available without one. If the school gets the costs covered by the council it will make life so much easier.

Another angle to consider is disability discrimination. The reality seems to be that dd will not be able to go to school unless you are there to look after her. If that wasn't possible, e.g. because you had to work or look after younger siblings, she would be unable to go to school because she wouldn't be safe. That is clear discrimination, even if she will be below statutory school age at that time, given that all other children of her age can attend. It probably isn't worth your while taking an appeal to the tribunal, but maybe if you pointed out that they are in breach of their duty to make reasonable adjustments and are in danger of action being appealed against they might wake up a bit.

Ds 2 has an I.M.P- individual medical plan which lays out what treatment he needs daily and who is responsible for giving it. It has contact info and which medical professionals they can call on for advice,also all our contact info, maybe this is something you need.

Lots of staff are around during school holidays and so it might be worth while trying to contact them during the holidays.

I would ask if DD can start school after the staff have received sufficient training. I'd also be contacting governors, local authority, school health, GP - anybody - to ensure that the correct training takes place before school starts.

As I managed to find out who dds 1:1 is meant to be (DM works there too) I've had to take it upon myself to do training in holidays and have arranged days at home to teach and also an extra hospital training day for her. I don't feel this should be down to me but it means dd will hopefully be able to start on schedule with her friends and I very grateful her main 1:1 is willing to do this.

That's good news, insofar as dd can start on day 1, how nice of the person! It does also mean you'll have a feel for the person who's going to be with her which you wouldn't have had such an opportunity for - trying to see the bright side!

She's lovely and I can't believe she's giving up so much of her holidays to do this she's even going to a day at hospital to do training and has been really lovely although she looked overwhelmed she said all the right things.

That's great - lovely that she knows how important this is, not only from a practical side that she needs the training, but also to you that your mind has now been put at rest and you can now get on and ENJOY this summer holiday!

I hope you have a lovely summer and best of luck to your DD starting school with her lovely 1-2-1 :)

I just hope the 1-1 who is doing the training with you over the holidays is the one the Headteacher decides to place with your daughter in September. Staffing issues often mean you don't know who support staff are going to be supporting until the new term starts, even if you have planned it before hand.
I have never known a specialist diabetic nurse not come into school to do the training. I work 60 miles from a specialist hospital, and in a different Local Authority to the Hospital but one of the team there still came into school to train all the staff.
I hope it all goes smoothly in September and your daughter settles in well.