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 .

The school has a legal duty to support your son as he has a medical need. The answer is not for them to keep calling you to take him out of school or for him to stay at home.

https://www.ipsea.org.uk/illness

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

The time frame is set legally. If LAs are not adhering to the time frame, parents can seek judicial review to enforce the correct action.

But if the staff haven’t have the correct training how can they do that?

The issue here is the school but the delay in staff being trained

The school should have a healthcare plan in place. Have they contacted the LA medical education team for support?

https://www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

Yes,
my dads was a colostomy. Thanks for taking the time to explain things. And I’m not being sarcastic!

Its the gelatin in marshmallows that helps. Eating bread or potato with every meal also makes a difference. As does getting his hydration right and that's especially key for an ileostomy (watery stool leads to watery stool).

But it does depend what sort of stoma he has - a colostomy can be a very different experience to an ileostomy. And it can be hard work finding bags that fit well, he should be getting lots of support from his stoma nurse.

I understand why teachers don't want to get involved and agree that the failure here is with your local NHS nurse who is refusing to prioritise him. Agree with aforementioned complaint routes. Also, who's your local MP? This could be something they could really help with.

There are lots of stoma influences now, including children, it could help to reach out to them for advice.

How big are his leaks? If they're relatively small & can be patched up then it's worth getting his stoma nurse involved to help teach him how to deal with them. A lot for him to manage and it'll take a bit of time before he's confident but you have little other option.

Poor lad. He sounds like a trooper. You're understandably overwhelmed & exhausted but you'll crack this

It’s called an Education and healthcare plan for a reason. He has a health need that needs to be addressed while he is in school. It’s not always about learning support.

This is such a difficult one.

Obviously DS needs to be in school and his needs handled sensitively.

That said, I do think teachers are well within their rights to refuse to change a bag.

I have changed many myself (for my Mum when she was unable following a bowel perf and a lengthy stay with us) and honestly, it had to be me because others in the family couldn't do it as it made them feel ill.

We can all handle nappies for our own kids and some can handle these things for general personal care but not all.

At the end of the day, this kind of personal care is not a part of a teacher's job.

I think you should raise a complaint to governors and demand an EHCP because without one you have way less rights to fight for his needs to be met.

I really hope the school have a couple of TA's who would be happy to provide personal care and that they get trained soon.

It won't be super long until he can do it himself. I really hope he finds that freeing.

They are not trained. If I was asked to sort a stoma bag (I did it regularly years ago) I would refuse if my training was not up to date.

As kindly as possible op, this is an issue for you and dh to sort out.

Oh bless him OP, ok I haven’t read the other replies so apologies if I’m just repeating what’s already been advised…but I’ve had a stoma for nearly 10 years, I’m an adult so different in terms of coping etc but what I will say is this….the first 6 months I leaked every single day…sometimes twice a day so in that respect time helped and lots of chicken breasts and mash….i also cut my new bags in the shape of a flower and that strangely seemed to “ catch” the poo better than round or oval shape….also maybe try putting the bag on at a different angle to see if that might help him….also my absolute lifesaver then and now are Brava Elastic Tapes …the fit like a sticky banana around the sides of the bag…I use 2 on each side and they are the best early warning system ever as when a leak is happening they go a dark colour underneath which is the poo spreading and then I can change my bag before it leaks….also I used to eat plenty of salad and veg but it literally goes through me like water now and just not worth the amount of bag changes so I take a good multivit ( but I’m 53) and I worry less about all the balanced diet stuff ….

apologies for the awful lack of paragraphs , punctuation etc but I’m knackered tonight ….good luck to him bless him and hope some of the above helps …it really is trial and error….xx

I think the key thing is to help him get really confident with the stoma and help him not to panic.

At 12 and with no learning disabilities it feels possible that he could learn to cope with leaks etc? I am not dismissing how hard it must be. I have a 12 year old and he gets embarrassed very easily.

Sorry your boy has to deal with this.

Some solidarity as someone who’s waiting on the nurse giving gtube training to nursery. Although I am trained to give the training I’m not allowed to due to red tape from the local authority which is understandable but eating into my working hours as it’s me who’s got to go in and administer feeds etc 😭

I agree - as a teacher responsible for children with medical needs, I had training from the NHS and from the local authority team for students with physical disabilities. School have a duty of care to provide an education and asking OP to collect DS is not OK. First aiders could be sent on stoma training at the very least. If school say they can’t afford to do this, they can apply for an EHCP and part of the funding can be used for personal care needs.

That’s awful for your ds. So tough for him. Having to have a stoma and then when accidents occur…
Could you go to your MP about it ?
I’m not in the UK but I would be at the end of my tether too and would consider going to my local political representative.
It’s just not good enough.

An EHCP isn't a magic bullet, but it does at least state exactly what level of support is needed. And it doesn't always take years to get. Although the school didn't even suggest we apply when DS got ill - and we had other things to worry about at the time - when we did apply, it was granted immediately. (Getting the school to follow it is a whole other issue...)

The SEND Code of Practice 2015 and Equality Act 2010 make it clear that children can’t be discriminated against on the basis of their disability, so it is school’s responsibility to organise training by whatever means. OP should not have to take early maternity leave to do personal care for her DS. School are in loco parentis during school hours. It’s also going to adversely affect a 12-year-old’s self-esteem to be made to feel like a nuisance and sent home for something he can’t do without assistance.

The staff want to be trained from the sounds of it, but they are waiting for the training.

Yep. My son had an ileostomy and had to have it reversed after 9 months because he couldn't stay hydrated without fluids and also became dependent on TPN, he's still dependent on TPN now but only overnight as opposed to 24 hours and he can now stay hydrated whereas before, too much water would dehydrate him because it would just go right through him and obviously too little water wasn't great either.

The reversal meant he was able to be discharged from hospital once I was TPN trained but it means he is bowel incontinent and needs to be changed regularly at school because his bowel just doesn't work as it should after some health issues. We were hoping it would improve things but unfortunately it didn't in my son's case, they can truly be life changing for some people.

He can certainly have an EHCP - I would get started in the process.

Write to the head of nhs service and explain

I note that OP is being called out of work after DS has his morning mark and presumably expected to be back in school after lunch so it doesn’t affect school’s attendance figures. I’d be keeping a record of how many times OP is called out of work to do personal care and keep DS off so attendance figures are affected. School will soon come up with a solution.

The only solution possible is for the nurse to give the training though. The school can do nothing. Perhaps ops husband hould try to support her while they are waiting.

I would get started too - it will affect GCSE grades if DS is missing school at 14. It should be a straightforward process as there is clear evidence of medical need.

I’m an adult with a stoma … what mistakes could they make cleaning up and sticking on a new bag?

I get there may be issues around dealing with body fluids and I don’t know what the process would be if a child without a stoma had an accident.

But it’s really not a complicated process and the kid probably knows the process just needs some support.

I work in a school and my advice would be to ask the school to ask the school nursing team to contact you. In my experience they can speed things up.