School keep calling me about DS3 and I'm honestly at the end of my rope

[AutumnSlippers2025]

I don’t even know where to start really . School keep ringing me nearly every day this week to come get DS3 because of his stoma . He’s only had it since spring and I’ve shown them what to do twice myself because the nurse still hasn’t managed to get in . They keep saying they’re not “trained” so he can’t stay if there’s any issue but it’s literally just a bag change or if it leaks a bit and he’s mortified .

I’m shattered . Been on shift last two nights and barely slept and today they rang again at 11 so I had to leave halfway through midwife appointment . He was just sitting in medical room nearly crying saying he wanted to go home .

I don’t even know what I’m supposed to do . He can’t keep missing lessons but they make me feel like I’m neglecting him if I don’t drop everything and go . They said “maybe keep him home till it’s sorted” but then they’ll mark it unauthorised won’t they . I’ve asked about EHCP and they said he doesn’t need one because he’s bright but it’s not about that it’s his medical stuff .

DP’s away with work and twins are out god knows where and I’m 35 weeks pregnant and just feel like everything’s too much . Sorry this is long I’m just fed up of feeling like no one listens .

You don't get at EHCP just because you have health needs. They have to be health needs that relate to education.

@AutumnSlippers2025 If a school can't manage to meet his needs the lea have a duty to provide home tuition, either short term till his needs can be met at school or long term if that isn't possible.
https://www.ipsea.org.uk/faqs/what-support-should-the-la-give-me-if-my-child-is-out-of-school-for-any-other-reason

@Ratafia Is right.
I work for the local LA as an EOTAS Tutor and all of the students I teach have an EHCP and I am there because it has been deemed mainstream can't meet need (temporarily or otherwise). I nearly always teach at home/care home.
Not many children qualify for this support although I am always inundated with referrals.
Also important to mention here than another adult over the age of 18 has to be present at all times, for obvious safeguarding reasons.

No they don’t. My friend’s child has one owing to T1 diabetes.

I think as another PP has pointed out, this has the potential to take longer than 15 days to resolve and the school have already said they're not trained, and therefore do not want him on site. They can't exclude him, but they can say they can't meet need.

This should trigger section 19. You really need to be on it, because the LA have a duty to provide some sort of education.

In my area, we are really lucky that there are schools that cater to physical medical need that can be named on EHCPs, but if there aren't any of these schools available, the LA still has to provide your son an education and it's their duty to make sure this is done in a timely manner.

If you remove him to EHE, then you're taking the responsibility away from the LA. I wouldn't go down that route.

You need to get this process started ASAP. This is affecting his mental health, and if they don't resolve it now it will quickly escalate into emotionally based school avoidance, which the LA still has a duty of care to accomodate and provide an education for.

This sounds awful for him.
It looks like he should have shipped in several areas that just hasn't materialised.
I'm wondering if someone could talk him through it if something goes wrong so that he is able to do it himself with their support?

Above should say support. I'm sure that's what I typed!

I was honestly thinking of taking him out for a bit but I don’t know how that would even work with baby due soon . I can’t imagine trying to homeschool when I’m up all night feeding

What about him just going in for the morning or afternoon?

It gives you a break with the baby, will give him less stress and there won’t be as many issues with homeschooling/ getting contacted because he’s not going to school.

He cannot learn if he is so anxious about his bag.
The learning needs to take a back seat and the focus should be purely on getting him to go to school and enjoy it, with staff who are trained to care for his needs.

The EHCP route takes months (and the minute over a year) and so although you could go for it, it will probably cause you more stress right now.

Download some maths games and find out what he’s missing at school and do something fun around it - eg watch a YouTube video and make a comic strip/drawing about it. Do paper mache of a planet etc.
You don’t need to worry about having to give him a proper school experience.

I would take early maternity leave.
Take him in for just the mornings or afternoons.
Get into this routine now before the baby comes.
Then let him go for longer and longer over time.

I never named you

In your first post you said stomas (with physical or educational challenges) should be straightforward.
No, I didn't

Why not possible?
Because bowels are complicated and the reasons for stomas can be even more so

@Allcats This requires another adult over the age of 18 being present throughout the length of the tuition sessions, however. This may be doable for mum if she has a newborn at home so is on mat leave.
The sessions can vary in length but are often around 2/2.5 hrs per day (10 hrs pw is usual).

Absolutely. Normal practice where I am.

The LA’s medical education team would be involved in supporting.

I shared your OP with my husband who has had a stoma for a couple of years. He would really like to help if he can.
For example, after struggling hugely at first, he now has an excellent network of fellow ostomates (of all different ages) who could help your son navigate the mental and emotional impact of having a stoma, as well as the physical management of it. I know that doesn't solve the immediate problem with the school, but it might help. There might even be someone in the group with a similar experience.
Anyway, please PM if there's anything we can do to help x

You’ve had good advice above; you need to be kicking off (politely) with school and the LA to push for support especially with the training to deal with the stoma. I’d also get the local MP involved potentially, ours is quite supportive and I know from local SEND parents a letter from her mysteriously seems to get things rolling quickly. I suspect the nurse coming in would suddenly be a priority!

If you’re struggling to get your head around it all, there are various SEND advocate services in most area who will help you draft paperwork and who know the law well and can support you in pushing for things - they’re a paid for service, but if you’ve got the money and are a bit snowed under given the pregnancy etc, maybe look at that? Local SEND groups would probably be able to give recommendations.

For a EHCP, the initial threshold to focus on is that for an EHCNA. It is relatively low. You only need to show DS a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. You might find the case law RB v Calderdale (SEN) [2018] UKUT 390 (AAC). It is about a child with colitis but the principles apply to other cases. Although an EHCP isn’t a quick or immediate solution.

DS also needs an IHCP. This is separate from an EHCP.

Section 100 of the Children and Families Act 2014 means the school must make arrangements for supporting pupils at the school with medical conditions. Also, if you haven’t already reading the supporting pupils with medical conditions at school statutory guidance.

It isn’t lawful for LAs to require parents to be the second adult. Parents cannot be compelled to facilitate provision in EHCPs in that way. The LA is responsible for funding a second adult where it is required.

Although many LAs think 10 hours tuition per week or even less fulfils their duty under section 19 of the Education Act 1996. It doesn’t. It is not a suitable full-time education and parents can force the LA to provide more. Neither is it sufficient for a comprehensive EOTAS/EOTIS package via EHCPs.

@flawlessflipper I absolutely would not, under any circumstances, tutor in a home without another adult over the age of 18 present at all times. For very obvious reasons. The teaching agency I work for simply would not permit that, neither would my teaching union.
Also, whilst students are entitled to a full-time education, this is extremely unlikely to be one of formal learning which I, as an EOTAS (QTS) tutor, provide. I am predominantly directed to teach maths and English as the core subjects and 2.5 hrs per day in one session is the absolute maximum of such learning students are likely to manage. Very occasionally, I teach science is addition. Any more than that would simply be unreasonable.
Many of my students have additional learning provided, but not that of formal tutoring. For example, they often have provided outdoor learning with animals, horses etc.

Trying to stop the leaks seems to be the priority. Appreciate some people do have to put up with it, but with being unable to contact the nurses, it sounds like there is still more to explore. Have you tried?

• Convex or concave bag shapes.
• m&s and next do supportive underwear with pockets for the bag. If it is constantly pulling down with the weight, that could cause leaks.
• An elastic belt that clips on to the bag to help push it in and keep it in place.
• A diary to see if he is eating certain things or doing certain activities on the days and times it leaks.
• You can get sticky plastic shower covers for things like wounds, lines and casts that shouldn't get wet. This might help temporarily to reassure him about smells if it leaks, as everything would be contained. It would need replacing every time he empties it though, so not ideal.
• You can buy a lot of stuff on amazon if you want to play around and can't get stoma nurses to help.

@Mrsnothingthanks did you miss the part of my pp where I said the LA is responsible for funding a second adult where it is required?

LAs often try to get away with only providing 5 or 10 hours full stop in any format. That is not a suitable full-time education. Yes, good EOTAS/EOTIS packages should include far more than just academic tuition. Sadly, LAs often try to say otherwise. Just like it is not lawful to limit it to core subjects only. Yet LAs often try to limit it to that.

To add, there is a facebook group called "parent support group for children with a stoma". You may find parents who have experienced the same thing on there and have solutions. Almost all of us replying here have experience as adults.

@flawlessflipper Is that still the case if a parent is working? Nearly all of the students I support have one parent not working at home (usually mum) as they say they can't work because child is at home.

@Mrsnothingthanks it applies to all. Parents cannot be compelled to organise, deliver or facilitate provision. Sadly, LAs often ignore this by trying to convince parents otherwise and force parents to take further action. Case law dictates parents can’t be forced to accept provision in their home either.

@flawlessflipper That's useful to know. Seems unfair to me that parents feel they can't go out to earn a living if education at home is required.
The alternative is of course tutoring in a public place but that would mean someone required to transport the child there and back. Also, in the case of children requiring medical care, this is also something I could not do if on my own. If working with someone else at least one of us would have needed to have received appropriate training.

Cicra do a guide for schools which includes stoma management. Its a good starting point.
resources for schools - CICRA https://share.google/tMb2XpMMS5lbDvyfB

The ostmy companies Colaplast and Hollister also offer nursing support which maybe worth a try. We had a series of visits from the local Hollister nursing team in the early days.
Secure Start share.google/vMEAJpgehHnVGmOwv

My DS has had a stoma since he was 10, so we've been through this. You need to fix the leaking with the stoma nurses and get him more confident managing it himself. But thata easier said than done, do you have access to psychology support through the GI team? Your DS is clearly struggling, its a huge thing for a teenager to be dealing with and you have all my sympathies.

@Mrsnothingthanks there are alternatives to tutoring in public places. Public places wouldn’t work for all, my own 2 DC with EOTAS/EOTIS included. LAs won’t do it unless forced but, for example, they can fund rented space. Transport (and escort where necessary) would also be the responsibility of the LA.

@flawlessflipper How does it work for your children?

@Mrsnothingthanks two of my DSs have comprehensive EOTAS/EOTIS packages via their EHCPs. Among lots of other provision, one has 16hrs of 1:1 F2F tuition and the other has 14hrs of 1:1 F2F tuition. They each have 2:1 for the whole time. During the tuition hours, the 2:1 is made up of tutors (the tuition hours are covered by each of them having 4 tutors - 3 are the same and their English tutors are different because they need different focuses) and HLTA (for DS1) and LSA (for DS3). Home tuition works for us but if it didn’t, the LA couldn’t force us to accept it.