EHCP and epilepsy

[MyOtherCarIsAPorsche]

DGS is in the nursery at his local primary. His EHCP (global development delay) states that he 'needs eyes' on him/supervision at all times because clusters of focal seizure activity can lead to longer seizures (he has rescue meds in school) and includes when he uses the bathroom and also at lunchtime.

I take my grandchildren to school a little more than my daughter does to accommodate her shifts at work. I told the school office yesterday that I would be collecting DGS at 12.30pm today because of a physio appointment at 1pm.

There was no one in the office when I arrived to let me in the at the school gates. After 5 min or so a parent came out with her child (release button inside premises) and I went to the office. There was no one about and I waited another 5 min or so until I saw a teacher walking past. I asked them if they could sign us out and find DGS as I was now tight for time. We went to the Foundation playground and he was no where to be seen. There was an adult 'supervising' in the playground. A teacher came out of the foundation building and went to look for DGS. Time passed, she came and said she couldn't find him and went inside to look. Then again came out and started looking outside. My other grandchildren in the meantime had seen me and came over to talk. They went around the perimeter of the nursery fence and shouted for DGS and he came running over. He was not being supervised.

We arrived in the hospital (5 min drive) a few minutes past our appointment time and the appointment then started. A minute later DGS had a large seizure. This indicates that he must have had some previously in school as a series of smaller absences/focals always lead to a larger seizure. Nothing was recorded in his 'epilepsy book' to say anything had happened in school.

The physio stopped the appointment and I took him home and rang daughter to tell her. She had to pull over (was driving) as she had started to feel sick while I was telling her what had happened. She rang me back to say she'd vomited.

She asked how was she to concentrate at work knowing her son wasn't safe/being supervised. And it was only a matter of time before she got 'that' phone call.

He has seizures where he turns blue as his brain activity can stop his heart - this has happened since being newborn (8 weeks prematurely due to mum having Covid).

It's blatantly obvious that school is not following the EHCP - we've suspected this all along. There is a huge list of tasks which he should be doing 1:1 with staff everyday and we think we should be seeing evidence of this in the form of some sort of progress. The EHCP is very prescriptive.

Should the school be recording what they are doing with regards to following the EHCP? And can we ask to see the evidence? Because we think that the EHCP has been completely disregarded.

How major is this incident on a scale of 1-10, and what can we do protect DGS? Is this a reportable occurrence/safeguarding and if so who to?

I had to go back to school later to pick up my older grandchildren and DGS was still showing signs of being post ictal. The deputy head asked if she could have a word and I said that I would rather she spoke to my daughter tomorrow as I felt too upset to discuss anything rationally.

How does anyone ever know if an EHCP is being followed? Do we just rely on the school's verbal statements that they do? The school have really let us down today.

DD should request a meeting. Is there an epilepsy nurse involved who could attend? Does DGS have an IHCP?

Although, EHCP wise, if the EHCP is written saying ‘needs eyes’, it is too woolly and needs improving. DD should request an early review. Regarding other aspects of the EHCP provision, is the wording detailed, specified and quantified? Or is that vague and woolly too?

DGS has been in that nursery since he was three, he's four and a half now. The epilepsy nurse has just been into school to do staff refresher training. He has an epilepsy passport which covers his condition.

We had an early review last November in order to stress supervision during bathroom visits and lunchtimes as he had a seizure while using the loo and children were stepping over him without telling staff he was on the floor. He had a black eye for several weeks afterwards. The epilepsy nurse and sendiass attended.

EHCP is very prescriptive in respect of specific tasks, duration, and frequency. When it is all added up there are over 20 hrs of 1:1, 1:2 1:3 support. It's free flow play and he comes home wringing wet through every day, his brother, who is in reception, says that he plays outside in the water or sand all day.

@StrivingForSleep

If the provision is detailed specified and quantified in F but is not being provided, has DD contacted the LA? It is the LA who is ultimately responsible for the provision. The provision can be enforced. However, enforcement is not possible if it is vague and woolly, so DD needs to really look at the wording. She should recheck this even if she thinks it is detailed, specified and quantified because lots don’t realise it is vague and woolly until they try to enforce it and can’t.

Unless DGS is not attending full-time, over 20 hours is not enough.

I still think an early review should be requested. Although as DGS is preschool age, a review should be held next month anyway. If one is planned for early next month, it is pointless requesting an early review.

If the epilepsy passport is not an IHCP by another name, DD should ask about this too.

Many thanks @StrivingForSleep

Is it possible to have two early reviews within one year? Next review due November.

Daughter rang LA - they're ringing her back tomorrow.

He is full time.

Daughter was advised that she did not need to apply for his reception place as he would be automatically be assigned because the school is named on his EHCP. She has not heard whether he has a place from the LA like all other parents who were informed last week. So does she assume he's automatically got a place? She thought she would have heard at the same time as everyone else.

I think we are assuming the epilepsy passport is an IHCP.

Yes, DD can still request an early review. Reviews must be held at least annually but they can be held more frequently. And, as DGS is under 5, reviews should be held every 6 months.

If DGS is full-time, the EHCP needs improving if only over 20hrs provision is in F.

DD didn’t need to apply for a reception place via the normal admission process but the amended EHCP naming the reception placement should have been finalised by 15th Feb. If that did not happen, DD needs to urgently send IPSEA’s model letter to the LA. If that doesn’t work she needs a pre-action letter. She should not just assume the school has been named for primary placement if the amended EHCP has not be finalised naming that school for the reception placement. The nursery being named for the nursery placement does not necessarily mean it will be named for reception. DD should have been able to state her preferred placement as part of the review in November (which I imagine was used as the phase transfer review).

DD should check if the epilepsy passport is an IHCP because it may not be.