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 .

Is it really classed as a medical procedure? It’s not like inserting a catheter.

Is it worth trying your GP? Or does he have an OT? Some are trained in more specialised areas.

I work in pastoral care in a secondary and really feel for your son. I feel certain we would try and help before calling you.

Give sendiass a call they can advise about the echp. Also contact your local school nursing team they can advocate for your son. Ring the nhs nurse every day if you have to. Answers only happen if you push in these scenarios I have found. Good luck op.

I just don't think EHCP is the answer. It took two years to get ours. The poor lad's already been waiting since March. This is medical and a nurse is needed.

That's so tough on you and your son.

I think the NHS is to blame in this scenario. School staff need training before they can support your son.

In your shoes I would be ringing the nurse almost daily and making it very clear that this training was urgent and essential- your son deserves full access to education and at the moment, she is preventing that from being possible.

I'd also escalate wherever possible (PALS, your MP, even the papers if you don't get anywhere).

I know it's hard to feel like you're being demanding/pushy but sometimes it's necessary in order to get the right support for your child.

Could you request section 19 education until this is sorted.
School can't meet need until they have training and so have said for him not to come in. If training isn't going to be within 15 days then section 19 should be triggered to provide tutors at home.

The LA will likely ensure the school receives the training as section 19 is costly

I have a stoma and would echo pps who have said it sounds like his needs reviewing if it is leaking regularly - that rarely happens for me if everything is working correctly. I feel so much for him - it’s hard as an adult but I am old enough to not care, I would have been mortified as a teenager. I think it would really benefit him to have some stuff stored at school if they would let him like spare underwear and uniform. That way if there is a leak he could maybe manage it better and wouldn’t need any help because he could just sort himself out and change his clothes etc? I have found the best way to feel in control is to have a few coping mechanisms and having spare clothes is one of those methods. He also needs access to a proper disabled bathroom, I hope they have given him that provision at least? Thinking of you both. Please do PM me if you need any advice. Lots of people on insta give good advice and support if he is on social media.

You can apply for an ECHP assessment yourself. Look here https://www.ipsea.org.uk/making-a-request-for-an-ehc-needs-assessment

You need to shout loud, ask to speak to the school nurse, if the stoma nurse is NHS then complain to PALS.

What a frustrating situation. I feel for you and your son!

As a teacher, from a safeguarding perspective, the school can't deal with a medical issue for which no one has the appropriate training. It wouldn't be safe for your son or for the staff involved, as much as they might want to step in and help. They could end up making the situation worse, causing your son an injury or infection.

It's nonsense your child can't have an EHCP because he's 'bright'. Intelligence has got nothing to do with it - your child has medical needs that require reasonable adjustments for him to be able to attend school. This needs to be actioned ASAP. Get onto the pastoral team at school (or get your husband to do it as you've got so much on your plate at the moment) and insist on them doing the plan. If they keep telling you he doesn't need one, then escalate to the Local Authority until it gets sorted. They just don't want to do the paperwork, by the sounds of it.

The nurse not being able to fit in school training since the Spring is ridiculous. Perhaps your school's pastoral team can get involved to expedite the process - this is really a multi agency issue, as if your son's attendance is affected by his healthcare needs, then the pastoral team at your school needs to be in touch with his medical team to find a solution.

OP this reads as though the school doesn’t know what the H in EHCP stands for

It shouldn’t really be leaking or needing changed during a school day as long as it’s being emptied regularly. Maybe ask to see the stoma nurse/team again, possibly the bags he is using aren’t working for him if he’s having lots of leaks. Have you got templates for cutting the holes or doing it yourself by eye? Maybe he needs next templates if he grown, swelling has gone down etc.

Yes he should be entitled for an ihcp....health care plan. Apply yourself to the LA.
A stoma should rarely leak so do try and trouble shoot and reduce that.
the supplying company (Abbott here) train schools here, not the nhs nurse. Who mails your bags out? Contact them and see of they offer that service, and also more input for yor boy to increase his confidence in changing bags with a leak.
It does get better

Ring stoma nurses boss this is not acceptable

I was nagging school for an ehcp for years and they finally told me that I could put an application in myself. The whole process took a few mths and it went through. Presume you already have DLA? Sorry things are so tough.

My son used to have a stoma and arrangements were made right away for his stoma nurse to attend school to train the teachers. The issue here is them not providing training for the teachers.

I think your best option here is to get him confident with changing the stoma himself and making sure his bag is suitable for him, it is cut correctly and you have plenty of flange extenders. Is he prone to leaks? If he is, it might be worth trying to find out why such as does he have a high output and if he does can anything be done to help with that? I use high output as an example because that was the issue with my son's stoma and a few things helped.

Diet - low fibre, eat little and often as opposed to 3 big meals. Weirdly enough, marshmallows can also thicken output.
Medication - loperamide
crystals - pop it in his bag, it thickens up the output and makes it less likely to leak

My son's stoma was an absolute nightmare. It leaked a lot but everything above, especially the crystals and flange extenders helped contain it somewhat.

An EHCP will not solve this. It will not solve the problem of needing someone appropriately trained to come in and train school staff.

It's a case of nagging the NHS and/or school nursing service and/or stoma supplies company.

It is taking much longer now I'm afraid.

Could you take early maternity leave?

It solve the problem of the bag but at least you won’t be so shattered and will have some time to sort the issues out before the baby comes.

If they are not trained they are very limited in what they can do. I get it’s A pain before DS teachers where trained I had to go in every day to do his tube feed.

Even when trained the training will only go so Far though so part of being a stoma parent will always be helping manage that

One school I taught in had assistants for physical and learning needs. No way would a teacher be asked to deal with this. With any physical issues, our assistants deal because they have the specialist training and facilities to support the child. I am appalled that your child is not being properly dealt with, but I also think his stoma needs reviewing.

It's not like inserting a catheter but you do need to be able to know how to do it safely and correctly. Doing it incorrectly can cause leaks and if leaking is already an issue, he will likely be prone to his skin getting sore and irritated around the stoma site. You also have to be able to clean it correctly and also potentially know how to cut a bag to fit his stoma as they don't generally recommend pre cut bags for children.

It is pretty straightforward once you know how to do it but some people do have tricky stoma's and it takes more effort. My son has had a reversal now because his stoma was supposed to improve his life and it made it a million times worse due to high output and constant leaks.

You can apply for an EHCNA yourself. Although having that wouldn’t change the need for the school to have the proper training. I wouldn’t want to deal with someone else’s stoma without training from a professional so I don’t feel the school are being unreasonable there.
Where I am the school nursing team could support with that but the piss poor response from the stoma team would anger me beyond belief. They need to be doing what they are supposed to do.

It sounds very stressful especially at this stage of your pregnancy. Maybe keeping him at home until they have staff trained to help him would reduce the stress for you as you get closer to having the baby, but speak to the SEND team at the Local Authority first. It also sounds like it is causing your son a lot of stress and anxiety too.

He can have an IHP put in place, but if they are not trained in stoma care they will not be able to help him with leaks and bag changes.

https://wellatschool.org/ihp

Definitely speak to the stoma nursing team at the hospital (or local paediatric community nursing team for your area) and the school nursing team to assist with getting the IHP in place, but also the SEND team at the local authority about alternative provision whilst the training is being put in place for school staff.

The school can book training through providers as well. Colostomy UK may have some suggestions, but here is one provider below.

https://www.firstresponsetraining.com/health-and-social-care-courses/clinical-skills/#courses

Oxford University Hospitals guide for secondary staff.

https://www.ouh.nhs.uk/media/zeijjlj0/85969school.pdf

Thanks - some things I hadn’t thought about there.

My dad had a stoma but I didn’t get involved with it.

You need to start sending emails to the stoma nurse and cc PALS. Very easy to brush of phone calls but when there is a record of requests they can’t keep not actioning them.

In your first email document that you have made multiple phone call requests for stoma support for your son so that he is able to attain school. Record the dates you made this request ( check your phone records). State no assistance has been provided and this has resulted in him missing school and impacting his mental health. Advise you need the stoma team to provide you a date when they will provide the required education to his school and that you expect this to be prioritised.

Next paragraph record if the stoma team is unable to attend the school or provide a date when they will attend the school they need to provide the details of the person this request needs to be escalated to.

Send the email and then keep emailing them on a weekly /fortnightly basis until the stoma support is provided
I work in healthcare complaints and this is the most effective way to get complaints or requests actioned.

There's different types too. I'm assuming that OP's son has what is called an ileostomy which means small bowel, the same my son also had and has a higher risk of leaking as opposed to a colostomy which is the large bowel and tends to have a smaller chance of leaking as the output tends to be more formed.