To be furious at headteacher?

[paradisecityx]

Hey.
My daughter is in year 4, she is 7 years old and has IBD (ulcerative colitis). This is an autoimmune condition that will be with her for life, unfortunately.
She was diagnosed at 3 years of age and it has recently flared badly and her meds she was previously on aren't controlling it anymore.
She is now taking a medication that's a complete immunosuppressant.
This obviously concerns me with her attending school but we're trying to keep life normal as can be for her.

I spoke to her head this morning and asked if I could send in some hand gel & some hospital grade wipes for her desk and chair, that my daughter can use to wipe down her working area just to try** and minimise her chances of catching illnesses back to back.
Her head teachers response was "well kids touch everything so there's not any point, but if it will psychologically make you both feel better then yes as a lot of it is in the mind'

AIBU to be absolutely pissed at this? I'm trying to decide how to deal with this as in my opinion, it's completely unacceptable and cunty. My daughter is on a medication that's used for chemotherapy to try and save her bowels and that's pretty much explain how little her headteacher understands (or cares for) her condition. I was tempted to email (they have 2 headteachers over the federation) the other and see what they think of this, but don't know how to go about it.

IBD requires reasonable adjustments. It is not some horrific disease that others can catch and should maim a child's schooling if well controlled. If not we'll controlled that's on their hospital team but my god suggesting a child shouldn't attend school because of ibd is just insane. If they can't because of x y and z that's one thing. But to suggest it as they need some small adjustments.... What is wrong with the world!!

I'm so sorry. She's in y3. Typo. I am in England

Look at the statutory guidance above and have a meeting to discuss her medical and health needs
Set out in writing what accommodations

It seems clumsy, but the way I am reading the statement is not that the head thinks the illness is in your mind, but that your precautions won't really help.

Write an agreed plan

I'd be really mad too. Pp has a good point that ht may be confusing it with IBS which can be triggered by stress? Maybe email ht and the class teacher some information about the condition, and the effect of the drug she's on.

I agree with this. I read it as she wanted to acknowledge it probably wouldn't make any difference but that if it helps either you or her feel better then to absolutely do it.

I actually thought what the Head said was quite honest - which I appreciated as quite often they tend to just use jargon that doesn’t actually answer the question.

They said that you could send the wipes in but essentially its main benefit will be in calming your worry.

Kids in primary school are walking Petri dishes. Wiping her table is not going to be enough - what about door handles? Shared equipment? Coughing kids? Picking their nose? Playground?
I completely get why you are so stressed about your child and their health but it’s not realistic to be able to send them to a primary school with some wipes and think that it will be this hugely protective step.

I do understand it isn't going to hugely protect her and may not help but surely something is better than nothing? The last thing I want is the poor girl catching every bug and virus aswell as feeling unwell with her disease and side effects from meds. I was trying to think of ways to keep her at school and minimising her risks. It's apparent that that's virtually impossible but I don't want to have to isolate her. don't know what to do.

This is an excellent idea. I’m not sure the HT gets it. Lots of people saying but she’ll still be touching other things etc, but anything to minimise contact with infection helps if you’re immunosuppressed.

If OP's child reaches the point when she can't go into school, OP should not choose to home school. Provided the medical evidence supports the fact that she can't be in school, she will be entitled to home tuition provided by the council (generally known as EOTAS - education other than at school).

Nobody is suggesting that she's home schooled to prevent others catching a disease from the OP's daughter, rather to protect her from the maelstrom of bugs that do the rounds in an average classroom!

I think there's a general lack of understanding around IBD and people conflate it with IBS or even worse self diagnosed IBS. It is absolutely not the same and IBD can be incredibly serious. I went from 12 stone to under 10 in 8 weeks after my last attack and couldn't leave the house for half of it. Crohns and Colitis UK have some good resources that can be given to others which might also be helpful.

Really not trying to be picky here, just clarifying terminology that might help the OP drill down the options she is considering.

Most UK based sites refer to 'home schooling' when talking about receiving school provision at home for those students who are still the responsibility of the local authority but cannot attend a registered setting for whatever reason.

This is distinct from '(elective) home education' which involves withdrawing from school and the parents taking responsibility for their education.

Eta - I wouldn't rely on anyone in officialdom using any particular terminology consistently though (cf debates over the schools Bill which conflate the two and understand neither!) so it's always best to clarify when actually discussing your options!

That’s very rude and I’d be tempted to correct the HT on that point. If only it was in the mind!

If it helps, I have IBD and have been on various immunosuppressive drugs and biologics over the last 15 years, and have to say I’ve never got ill more or for longer than the next person, and I traveled into the city daily by train for 10 years. Some of these drugs do reduce your immune system, but they don’t wipe it out to the extent chemo does, even though they are ‘chemo drugs’. it might be an idea to check with your IBD nurse to check how much she will be suppressed for reassurance. Hope you’re doing ok, it is an unpleasant condition.

Hi OP, this sounds really awful for your daughter and stressful for you. There is a chance it could be a misunderstanding on the heads part so first might be worth giving her the benefit of the doubt. When i first started to rear your post I mistook it for IBS but then realised it is a particularly nasty condition (I am no expert and very likely don’t understand these conditions well) so she might just not understand how serious it is. I think writing a letter/ email explaining the condition will definitely help.

Hello, first of all I am so sorry that the head said this to you, and it is totally unacceptable, dismissive and unprofessional.

For all the people claiming that the OP should not send her child to school and should home school then, or feel they are imparting wisdom in telling the OP that ‘all kids touch everything and you can’t stop it’. These parents clearly do not understand or sympathise with the daily agonising choices and sacrifices that a parent of children who are immunosuppressed do.

While it may be ideal for a parent to keep their child off school whilst receiving medication - how realistic do you actually think this is? Think about it financially and then think about it from a social skills perspective for the child. No, that doesn’t mean having play dates, it means being able to develop and extend social skills, such as taking turns and understanding emotions or others their age.

How would you feel if someone told you to take your child out of school- but that period could potentially be indefinite depending on the outcome of medication?

I will say it time and time again; there is nothing wrong with children learning that you wash your hands before you eat, and that you don’t touch things and put your hands in your mouth. This is absolute common sense from farming grandparents. This definitely does not mean I advocate sanitising everything and everything in normal circumstances.

OP - as others have said write this in an email to the head copying in all of the governors depicting what the conversation was, your concerns and your immediate request for a health care plan to be put in place with both input from you and your specialist nurse.

Contact your specialist nurse and consultant OP. Ask for a blanket letter from the consultant to explain to the school the risks of treatment and the frequency. For the specialist nurse ask for a letter outlining conditions that the school should adhere to to enable the management of her condition.

Lastly, for those who do not know, Ulcerative colitis is a condition that can not be ‘cured’ but managed. And, that management is sometimes with extreme drugs that can treat the condition for an undetermined amount of time - depending on the outcome.

This comes from both a healthcare professional, and a parent of a child who has received daily oral, monthly intravenous, and three monthly intrathecal chemotherapy for the past three years for Leukaemia.

Whilst I was fortunate enough to stay home with them, if you don’t have savings or a well earning partner this mostly isn’t the case and easier said than done.

OP - you feel what is right so stick with it! Best of luck x

Some people have zero tact and diplomacy.

Our old head was like that, so glad she's now retired!

I hope your DD gets better soon OP. Must be very difficult to manage.

I feel immense frustration for you and your daughter.

My friend's son nearly died as a result of UC as a teenager.

For a head teacher to be so dismissive suggests they don't understand the seriousness. It might be worth emailing back explaining you understand some people don't have any knowledge but asking what systems would the school put in place for a student undergoing chemo treatment. There's simple things that can be implemented that will help, like letting her use the disabled toilet, sitting near a window, letting you know if anyones ill.

The headteacher and her class teacher needs to work with you and your daughter to help minimise the risk.

Typical arrogant HT thinking they can say what they like no matter how rude 🙄 yes I’m an ex teacher.

I would contact the school nursing team and get an ehcp written up with the assistance of her medical team. Any questions about home education I can help you with too op.

I’d respond once, politely but robustly, along the lines of “Dear Ms X, I appreciate you probably deal with lots of minor issues but this is a life changing illness and your comment regarding it being “all in the mind” suggests you don’t have a full grasp on the severity. Would it be helpful if I sent in some information for you and staff from her consult so you are well informed?”. If I got anything other than an ‘eeek, bad choice of words, didn’t mean it’ type of response, then I’d make a formal complaint. You have to trust that they have your daughters health not just her education in mind. There are all kinds of challenges in schools but a compassionate and well informed response costs her nothing.

In your reply suggest that you perhaps hadn’t been clear then ask what reasonable adjustments for her disability are they intending to implement, based upon the risk assessments they would obviously have done for a child with an autoimmune condition on chemotherapy medicines. Also ask what additional training is being put in place to handle her physical disability, particularly education around her condition as from the response you received it suggests it is needed as they clearly don’t understand that this is very much a physical condition. If they push back further then express concern as to how someone with the responsibility for so many children is so dismissive of very real physical illness and disparaging of psychological needs. What a complete and utter dick.

I hope your daughters new meds help her and she feels much better very soon

That's horrific!! I have UC too so my heart goes out to your daughter, and to you. Definitely complain about that comment. Is she confusing IBD with IBS, perhaps? She blooming well shouldn't be, if she has a pupil at her school who is affected by it, but that's the only possible thing I can think of that would have made her come out with such an idiotic comment.

'frecklemcspeckles' considering the OP herself is considering home schooling, then I think your attack on my comment was unwarranted. Of course it would be wonderful for this little girl to be able to attend school in the normal way, but not if it's going to put her health at further risk.

I wouldn't send this. I don't think it educates or clarifies anything over and above what you already said. I would also be concerned that the HT is possibly confusing IBD with IBS and (either way) is massively underestimating the risks associated with your daughter's condition and treatment.

So I would send something like:

I wanted to follow up after our conversation yesterday with an email as I was concerned that here is some confusion about my daughter's condition and the reason I was asking for her to use gel and wipes.

• My daughter's condition is physical and not caused by her (or my) mental health

-it's an autoimmune disease called IBD and is not to be confused with IBS (perhaps include a link to information about IBD and I'd write the name out in full).

• Her current treatment for this illness is immunosuppressant drugs which suppress her immune system making her significantly more likely to both contract infections, and to react to those infections more seriously and for longer than the general population
• i have suggested the use of wipes and hand gel in an attempt to minimise her exposure to viruses and bacteria (you can get gel and wipes that do both in answer to the pp) but i am of course aware that this will not reduce her exposure to zero in a busy school environment
• Despite the risks, my daughter loves school and we would like her to have as "normal" a life as possible so it's very important for us that she keeps attending and that appropriate accommodations are made to allow her to do so and to minimise any absences due to illness.

As such I am happy to hear you have supported the use of hand gel and wipes and I will send x in with these from tomorrow.

As PPs have said you need a proper health plan in place moving forward so I would also ask for a meeting to take this forward.