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 .

@flawlessflipper Sounds really good and I can imagine you've perhaps had to fight for that (which you absolutely shouldn't have to).
But I can see how it is challenging for the LA as of course such provision must be incredibly expensive?

You can apply for an ehcp ..school won't do it for you .
That's what he needs then this is all sorted out .
If school provides a tutor at home ,that could be temporary solution..but when that happened with my DC ,I HAD to be home at the same time to supervise the tutor 🙄

@Mrsnothingthanks absolutely. Tribunals then enforced the provision. I completely agree, it shouldn’t take that. A comprehensive EOTAS/EOTIS package via an EHCP is incredibly expensive. It isn’t the cheap or easy option some think it is. LAs like to try to get away with providing very limited provision, which is in part about saving money. Unfortunately, many have to appeal to secure a proper package.

@turkeyboots that’s such good advice.
I get the impression OP is worried about the immediate issues. Her son could be out of school a long time waiting on ehcp and further help.
Dealing with leaking is a nightmare…. Have never got on top of mine (for some reason even after resites my stoma is really concave)
The underwear in marks and Spencer is fantastic (when it’s not sold out)
Time and confidence are paramount.

@flawlessflipper Sadly it doesn't surprise me. Look at the state of mainstream education - kids now lucky to have a qualified teacher in front of them or even a gluestick. It's appalling.
I don't regret leaving mainstream after 21 years, but I'm lucky that I can afford to. My pay rate is massively below the one I was getting working in a school and of course no pay in hols or if off sick. Which perhaps explains why I am inundated with referrals.

Thanks everyone I really appreciate all the replies and ideas I’ve written a few things down to look at later . He’s quite small for his age anyway and looks younger which doesn’t help with the anxiety side of it . Since the stoma he’s actually put a bit of weight on which is lovely to see but there’s still a big difference between him and his mates and even DS4 who’s 11 is taller than him now so he gets a lot of comments about that and about being babyish .

I did ask school if someone could just be there with him while he changes it not to touch anything just to reassure him and make sure he’s ok but they said they’re not allowed because it’s “medical care” and needs proper training . It’s silly really because he’s fine at home he just gets worked up if it leaks at school because he panics people will smell it or he’ll get laughed at .

I’ll look into those different bags and underwear thank you I didn’t know about the belts so that might really help . He’s got the flat ones now but they sometimes peel off round the edges especially if it’s hot or he’s been moving around a lot .

I’m going to try and get through to the nurse team again on Monday and if not I’ll ring PALS like someone said . I just don’t want him to end up scared of going in altogether because he’s such a bright boy and he used to love school before all this .

Flawless I am having this argument with my LA. My chikd is starting eotas, that has been agreed still arguing security in section F. Partly because I am saying they must provide the adult required for safeguarding

My child is actuslly gave 2 sdults/tutors due to his profile of needs, this is at home 3hrs 3 timesa week. Aiming to add in another provider for another 8 hours.. and forest school one day.

But even WITH their being 2 adults the LA are insisting there must be "a responsible adult" in the home whikst tutoring/education takes place at home. I am a solo parent so it effectively means I cant work, cant leave the house.

I have a stage 2 complaint open with LA over this. And tribunal (cancelled 2 days before it was due as the LA failed to submit working document...) is now next spring. I have stated in want ALL provision for the eotas package to be specified including resources ie equipment and staff for supervision.

I have got lots specified but some things they are refusing saying it doesn't need to be specified. No reason just refusing.

I am hoping I can get it at tribunal saying that children and families act makes LA responsible, send code of practice states specified, clear and unambiguous and imo the Equality act means requiring me to supervise is indirect disability discrimination.

Have been trying to find case law to back me up, if you know any relevant stuff I would be grateful for links!

Op sorry for derail the dchool should have a medical needs policy and they and the LA shoukd be working together to ensure supoort. Your updates make it sound like EHCPs may be wiryg pursuing as he clearly has SEMH needs related to his physical needs and he needs support for all of it to enable him to access his education.

Keep everything is email everyone they phone I would be emailing and say as per phone call today... when he goes home are they marking this as authorised, unauthorised, illness etc. I would find out. He needs a medical care plan.

I’ve got a stoma and I agree with this, definitely review what he is using.

I’d also get him to pre-cut his spare bags which he takes to school (unless he has the cut ones) so that they’re all ready to go and make sure he has everything which he needs ready in a kit for changes.

Can you do some “emergency practice” at home. Imagine he’s in school and it’s leaked, what should I do now. Don’t step in, leave him to do it.

As a half-way step can he be allowed his phone in school so that he can ring you from the bathroom? That might help reduce the number of times that you have to go up if you can talk him through calmly over the phone?

The H in EHCP is for health needs. The anxiety sounds like it could lead to EBSA and therefore SEMH needs. Start keeping a paper trail on everything. If he's missing school because of both, then it's an educational need. Get some advice locally on how to fill out a needs assessment.

Also, it sounds like you have a second child at the school. Would it be feasible for them to help? Not physically perhaps unless they’re a lot older but emotionally with keeping calm etc. Would they be willing to check in each lunchtime for example?

@Mrsnothingthanks in case you are interested, work in the holidays is possible for good EOTAS/EOTIS tutors. Some DC have tuition which continues outside of term time or which is 38/39 weeks a year but with the ability to spread it flexibility over the full year. Some also have provision that isn’t tuition outside of term time and have people such as a mentor or LSA/HLTA to fulfil that role - you might think these are too low paid but if you are being paid less than in MS, there are roles that are being paid the same/more than you. Or some EOTAS/EOTIS tutors, tutor schooled DC in the holidays.

If are being paid less than what teachers in MS get, there is better paid work out there. DS1&3’s tutors are paid far more.

@Madthings it all comes under the LA’s duty under section 42 of the Children and Families Act 2014. It is an absolute duty to secure the provision. There are various bits of case law covering that duty. The relevant ones for the LA’s absolute duty and not being able to compel parents to provide provision, including allowing access to their home, are set out in 8.22 and 8.23 of the Noddy guide. Easier for me to direct you there rather than list them all.

Sadly, many LAs try to ignore and parents are forced to go down the Tribunal route &/or enforce provision via JR.

It is easier to enforce things that are detailed, specified and quantified in F of the EHCP, but it is possible to still enforce provision that isn’t explicit in F if it is required for the LA to fulfil their duty of providing the provision that is in F.

If DC requires 3:1, that is possible too. Unusual, yes, but possible if that is what is required. I have supported families whose DC now have 3:1. One even has 4:1 when accessing the community.

It was just 1 hour a day for my son when he had a home tutor. I'm sure it really suits some children but my son was miserable, he wanted to be with his friends.

Thankfully, he has his EHCP now and is back where he belongs in school.

This. Follow it up.

@Kirbert2 Really pleased it was only so temporary for your son. For many of the children I tutor mainstream is deemed not to be the right place (for many different reasons) and there is often a very long waiting list for SEND specialist provision if this is what is needed.
How did you get a home tutor before the EHCP?

His school sorted it out. We had a video meeting with the tutoring place they use to go through my son's history, health needs etc and then it started about a week after that.

His school are extremely proactive. The Ed Psych is also like a dog with a bone too, really goes above and beyond. I've definitely been very fortunate in that regard with support from school.

They aren’t allowed to do anything is they aren’t trained you need to chase the team that will be training them.

Poor lad, does he have to do all this in the main toilets. Could he be given access to a more private toilet/area where he can change without worrying about other children and maybe store his spare clothes and essentials. If he can manage at home but is anxious maybe more privacy would help until he is more confident managing his stoma. It must be a lot to deal with at his age but the school should be accommodating his needs so that he can make the most of his time at school.

This all sounds really tough for both of you. Where is he having to change it in school? Are they allowing him to use a discreet toilet somewhere?

If you did decide to take him.out of school for a while online tuition might be an option? There are a few online schools around now which are private but not as pricey as 'proper' private schools and I wonder if you could get help with funding if the school are saying they cant meet his needs.

Contact your local MP and PALS. Their intervention should move things along. This is a disgraceful situation - very upsetting for your son and for you. It is not acceptable for you to have wait months for a nurse to attend - all this stress must be affecting the family's health.

As a nurse I would say to definitely contact PALS because it then has to be investigated. If the stoma team are too short staffed to provide education to schools then they are failing to provide the service they should, which they may equally be frustrated about (or they might just be shit), they may be overwhelmed with patients and it needs looking into.

Hi - so sorry this is happening. Your son should not need an EHCP to access some help - there should be medical funding available through the LA. School should apply for this. He needs an Individual Health Plan in school outlining what he needs and the training staff require. It is actually the school’s responsibility to ensure this is in place ( with suitable support from health services)
Here is a link to the National guidance : https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

If you’re struggling to get the health support you need from the nurse, you could check your SEND Local Offer and see whether there is a DCO or DMO in your area who could help.

Has your son got an IHP - individual health care plan specific to his condition within school? This is different from an EHCP.

http://healthconditionsinschools.org.uk/

There is specific government guidance for managing health conditions in school, which falls under statutory duty.

https://assets.publishing.service.gov.uk/media/5ce6a72e40f0b620a103bd53/supporting-pupils-at-school-with-medical-conditions.pdf

They cant change his stoma if they arent trained and signed off to do it.
If he doesnt have an ehcp then how are the school supposed to facilitate this?
I work in clinical care and done lots of stoma care. I have also worked in SEN schools where this would only be done by a specific trained person who was willing to do it and signed off.

You need to get support on applying for a healthcare plan and extra funding for his medical needs. Its not something you can just show them how to do and they can just give it a go. Its clinical. Things need to be sterile. If they havent properly trained anyone yet and they are not signed off as competent, then either he has to change his own bag or you or his dad come in and do it.
It sounds like that school placement cant meet his needs

Id also write to your mp they are often helpful. Sounds awful for you all at the moment i hope you get help soon

You absolutely can get an EHCP on medical grounds because my daughter has several rare health conditions and had one even though she did not need them for educational reasons. You can also apply for an EHCP yourself which our SENCo advised as if it’s turned down then it can be appealed but if they apply then it can’t be (no idea why). If possible then you should try to get them to support you in applying but with medical reasons the background and medical consultants carries more weight than school. We were lucky as the school was great and made sure everything was followed before we had it but she was going to college and I wanted to make sure that continued.