Personal care at school?

[EmilieRushmere91]

I just wanted to know if anybody has a child who needs help with personal care (for whatever reason) at mainstream primary school...
My DD's primary school do not help her at all with any 'toilet-related' needs even though she has Spina Bifida

I'm sorry I don't have more advice, our dds school is really good so I've never really had to contest anything. She should have a statement/ whatever the new name is in place, and it should have been in place since she started nursery or reception. Have the school refused to get one? Have the LEA said she can't have one? It's generally the schools responsibly to get the ball rolling but in our case we had support from physically impaired services as DD is paraplegic and uses a wheelchair.

That's awful your DD doesn't get help. My DS's school didn't want to help him initially (delay in toilet training due to ASD), but the LEA intervened after a lot of arguing from us. It was very stressful and the school were still reluctant.

Put your request and reasons in writing to the school. The school must help your DD and you should not be called in t do it. Also say that unless the school provides help, you will start the process for an ECHP. Can you call the LEA and speak to their SEN team?

My dd is in reception and not toilet trained. She has a mild form of spina bifida (hairy mole at the base of her spine). Her all round development is significantly delayed and we're also waiting for an appt to begin a diagnosis for ASD. I have to go to school myself to change her if she has a poo as the school (SENCO) have said they will not deal with this. I've given up my job to support her myself as I'd get phone calls from the school and have to go and change her, which made me feel so anxious. She's at a mainstream school which she loves and apart from the toileting issues she has come on in leaps and bounds. She's also about to get 1:1 support too, so it might change once this person starts working with her. Of course, I'm prepared to support her in anyway I can, but it's frustrating that I've had to give up a job that worked really well around a typical school day. She is showing no real signs of being toilet trained anytime soon, so it's just a waiting game. Paediatrician doesn't think the SB is causing any issues. I personally think it is combined with the ASD.

I have a son that refuses to use the toilet, nothing has been done about it yet but sometimes he can go up to 8 hours without it.

Hi all,
Just to give you an update. We have found the 'Right to go' guide as a coincidence whilst buying dd's new incontinence swimsuit from them, and it is an amazing document. Just what we need. I also think the link on the government website that AugustaFinkNottle posted is also fab.
We are having a meeting with the acting head (actual head is off having shoulder surgery) and the school nurse this Thursday so I will let you know how we get on.
I can't tell you how helpful you have all been and how you've made me feel 'normal' that other people have exactly the same concerns and opinions as me. It seems as if the school is going to be in big trouble with all the evidence and documents that I have compiled. They have absolutely jumped into arranging this meeting with the school nurse, and before they told me it was MY responsibility to arrange to contact her!! (Just shows how unbelievable they really are...) so I get the feeling that they've got a bit of a guilty concience.
Obviously they tried to play the 'Oh well we didn't think there were any concerns...you should have let us know sooner and we could have dealt with it...' but there's only so many times I can email and ring to say PLEASE CAN YOU SUPERVISE HER IN THE TOILET!!! and her IEP hasn't been updated since 2014...that is THEIR responsibility.
We are really not asking for much...so I hope they are really apologetic and I see some drastic improvement. I'm also going to really push for them to train a TA in intimate care. Because at the end of the day, it will benefit so many other children other than mine. I know another girl needs some cream applying to her arms and legs during the day and they won't even do that for her. The parents have to go in to do it!
If you can't have someone trained in intimate care for an incontinent child...who the hell can you have them trained for?! I hope you will all come here and read the outcome on Thursday! x

Excellent news - I'm glad you found the document, it;s really useful isn't it.

So we went to see the school the week before last. They didn't have a lot to say for themselves and we could quite clearly see from the documentation we put in front of them that they were pretty shocked/worried about the amount of research that we had done. They struggled to answer our questions and had a pretty 'wet' response. The school nurse was there and I have to say that she was absolutely useless. She didn't seem to know what the school should be doing, why nobody is trained to do personal care, what training they would need or even the name of the head teacher. You have to remember that this is a village primary school who gets OUTSTANDING Ofsted inspections.....The mind absolutely boggles.
Anyway, they have agreed to update her care plan, supervise her pull up changes and the head teacher and deputy have offered to take on the 'intimate care role' with immediate effect.
Unfortunately during all of this my DD was rushed into A&E with sepsis, and it turns out she had acute Pyelonephritis. To get an idea of how ill she was, her pulse rate was 236 (!!!) She was in hospital all of last week. Why did she get this poorly??? You guessed it...it all stemmed from a UTI that was due to poor hygiene; and whilst I can't blame this on the school entirely because she catheterises and there is always a risk of infection, I can damn well tell you that sitting in a dirty pull up has not helped matters. I don't think I have ever felt this angry. It's safe to say that I have put a letter of complaint together to the Chair of Governors.
Here's hoping things at school will change rapidly...but right now I am exhausted, emotional and in desperate need of a holiday :( :(

Your poor Dd I hope she gets well soon and that her care needs are properly organised before she goes back to school!