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 .

Oh bless you. A stoma is hard to deal with as an adult but a child, wow. How old is he? He sounds like he’s really trying.

Wow that sounds tough, how are you all going to manage when the new baby comes along? I think you need to explore options for dh being more available to help. The school's hands will be tied with something like this, they won't be allowed to do more until they are trained and signed off.

They really can't do it unless they are formally trained. Imagine if they made a mistake! How old is DS? Can he do it himself?

He can have an EHCP because kids with diabetes have them and have a 121 to manage the insulin. This is obviously not life threatening in the same way but it is still a medical need?

Is it an nhs nurse? If so you could escalate with PALS to hurry up her doing the training?

Speaking as a teacher who's been expected in the past to manage pupil's medical needs without proper training, it's stressful. And you often cannot get away from the class to deal with anything on a 1-2-1 basis with a child. I would want proper training before being asked to do that.

Staying at home isn't the answer though.

Why aren't you and the school both phoning up the service at the hospital that deals with your child to press their need for someone to go in and give training to the staff. It's what we needed to do with the diabetes team before they'd send the nurse in to properly train staff members in time for the end of year residential when we had to stress that we were not comfortable giving medical support 24hrs a day without full training.

Do they still? That isn't the case in dd's school. The class teacher and several TAs have had to have the training but it needs two to administer the actual insulin so it makes things very difficult. If the school thought they could get a one to one they would definitely choose to.

He can have an EHCP if the alternative is receiving no education because no one is trained to change the stoma bag. It’s like saying a child with epilepsy can’t attend school because no one is trained.

How old is he? If they can’t accommodate his needs then the buck stops with the LA to find an appropriate placement for him elsewhere.

If he’s had his stoma since spring then it’s just not acceptable that the nurse hasn’t got into school to train the staff.

When my child was diagnosed with Type 1, the nurse specialist went into school before he’d returned. We have a care plan that I wrote with school and his team.

I totally understand that teachers have a lot to take on when it comes to medical children but he’s entitled to go to school.

I would be phoning your stoma nurses asap.

The nurse needs to get in there asap to provide training. It is the only way to move this situation forwards, which is currently difficult for your son, you and the school staff.

Does he have a stoma nurse?

That sounds really hard 💐 I don't know if things are different now but it the past you definitely used to be able to get an ehcp for medical needs x

It depends on their age. My DS hasn’t got one and wouldn’t have needed a 1:1. Multiple teachers and TAs have to be trained regardless.

Are you in touch with any families with children with stomas or fb groups etc for advice?

He’s 12 and he’s had bowel problems since he was born pretty much so this isn’t new it’s just the stoma part that’s recent . He can empty it himself fine but if it leaks or comes off he panics and wants help and school just say they can’t touch it .

The nurse is nhs yeah and I’ve rung her loads she keeps saying she’s short staffed and will “try to fit us in” but it’s been months now . I’ve told school that but they just shrug and say they can’t do anything till they’ve had proper training .

I know it’s not their fault but I can’t keep running out of work every time . I’m on my own a lot and I’ve got the other boys and baby nearly here and it just feels like too much . I thought once he had the stoma it would make things easier for him but it’s just another fight .

Hi OP I’ve a bit of experience through a family member of Stomas, although this is an adult.
Definitley go down the complaint route with the Stoma nurses. Leak’s shouldn’t be a regular occurrence, but they do happen. It’s normal to get style of bag changed etc if this is happening regularly.

It might be worth contacting https://www.colostomyuk.org/support/helpline/
Feel free to PM if I can help more.

School are right and yes keep chasing the nurse, but there are wait lists for this type of training. What is your husband doing to support you?

How often does it leak? Are the bags still the right size and have you got the extra side sticky things that look like bananas?

Not schools fault if they haven’t had training. What if they attempt to fix something and cause a medical emergency?

85969school.pdf https://share.google/m5QnGKNAMnJldjwAv

I found this useful guide. I can't see any other option than making a formal complaint to the hospital (have you at least complained to PALS?) as this is definitely not something staff can do without training.

Has the school made a referral to the school nursing service?

Who's been dealing with this at school? If it's the SENCO, get the SEN link governor involved (email should be on the school or academy Trust website).

I don't think an EHCP is needed but a medical plan and training definitely is.

When you say he needs help, do you mean he just needs a nice calm person as an extra pair of hands ? or is he expecting them to change the bag ? Does he change it at home ?
How often does it leak , might it be he needs a different type of system ?

How frequent are the leaks? It really shouldn't be happening more than once in a blue moon if everything is as it should be.

He may need a different type/shape of bag.

Are his bags pre cut to size and has he got his kit with him and all ready to use if he needs to, with minimal faffing? Can you work with him at home to become independent, have him do the routine changes to build confidence?

I found it easier to do them lying down when I was learning, that way if anything came out it didn't fall onto my clothes or anything.

Try searching "school nursing service" plus your borough or area name.

school just can’t be expected to carry out medical procedures that they aren’t trained for, and they won’t be covered to do, in the event of any errors / issues -
they can’t bend that bureaucracy because you are genuinely having a hard time - they just can’t
need to keep up the phone calls to school nurse team - and contact PALs

He can have an EHCP - the H is for health. I've got a teacher friend who had a similar situation in her class and the student got an EHCP which led to an LSA.
Good luck I hope you get some support very soon