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.

I do not think the head was saying that the effects of immunosuppression were in the mind, but rather that, in the context of being unable to protect your DD from coming into contact with pathogens in school, she could see that trying to keep her immediate work area clean might bring some psychological comfort.

I am sorry that your DD is going through this. I have a GD in a similar situation.

That was my interpretation too, as someone also on immunosupressants - but no longer at school.

I would have had to say something equally condescending back to her like "as it's a physical condition it's actually all in her bowel not in her mind".

Completely dismissive of a very serious condition. What a twat.

Really rude. I'm a teacher and the first one to stick up for schools, but this was really unnecessary.

Are there any info leaflets you can give her? My first thought would be to learn all I could about your DD condition. Maybe a leaflet in her hand might make her realise it’s a serious condition?

It’s good practice to follow every meeting with a summary email.

Dear Ms Blah
We met yesterday to discuss measures that can be taken to minimize DD’s exposure to pathogens while she is having X treatment. I will be sending hand gel and wipes for her to use to keep her desk, hands and other items clean.
You said there was no point trying to keep clean, but I disagree. I think it’s important to make every effort to minimise her exposure to pathogens as her medical condition is serious and life long. Prevention today can have positive long term impacts for her.

thank you for supporting DD’s health
OP

yanbu

as a completely separate point and not what you asked, but hand gel wont kill a virus like norovirus, cold and flu. And pretty much anything else that you’re trying to ward off to protect your dd. My dd also needs to try and keep well due to a health condition and we use the boots anti viral hand foam and wipes. It’s unique in that it kills viruses not bacteria. It’s worth checking out. It’s more expensive than anti bac gel but often on 3 for 2 offer. My Dd keeps it in her bag and uses it regularly. We also use the wipes when we travel on public transport.

I completely agree, and I'm fully aware that wiping down her work space isn't going to completely prevent her from catching illnesses. I just want to, in any way I can, do my best to put measures in place to try. I am also going to buy my daughter her own pencils and what not and have them in her own case.

My heart breaks for her and she generally enjoys the time she has at school which isn't a lot as her disease is so active at the moment and making her feel so poorly.
I'm terrified myself, and just wanted some sort of understanding/support from the school.

She does have an IHP in place that I said will need updating due to change of meds. Not heard from the SENCO yet.

I know her IBD nurse pretty well, she's lovely actually. I am sure she'd be happy to write a letter regarding the severity of her disease and the drugs she is now taking for it. It's just sad that everything feels like an uphill battle for her and myself to get any kind of support with this.
Appreciate all of your replies x

That's great.
Thank you. I got so cross and upset that I couldn't even put a half reasonable email together about it, that's super helpful. Thanks again. X

Ahh I hadn't heard of this. I got the big pack of Clinell wipes which I use indoors too on handles light switches remotes etc, but I'll be heading to boots tomorrow. Thank you, hope your lo is ok. Xx

Should your daughter be taking other precautions? e.g. sitting away from the other children, wearing a mask, etc.?
Have the medical staff said it's safe for her to go to school?
I'm not being unkind - I'm on a chemo drug for a non-cancer condition so also have a compromised immune system and I try to avoid crowded places.

They've advised that, unless she is picking up back to back illnesses, or her bone marrow becomes an issue (in blood work? - she's having fortnightly bloods to monitor liver pancreas kidneys and blood cells etc) then to try and send her in if she's feeling well. She's been off 3 out of 5 days this week as she's just so tired. X

She was dismissive and rude OP I'm sorry and I can understand how stressful it must be for you. I do see what the head means about it not eliminating the risk as her desk is one of the areas least touched by others and the rest of school will have more risks.

Does she have a care plan in place? Presumably she has something so that she can go to the toilet whenever and any other support? If so try and get a proper plan written up with how school can help support ie having own equipment as well as the cleaning. The gel and wipes would have to be kept out of the way of other children though in a cupboard.

Just to reassure you a bit if I can though. I'm a primary school teacher for that age and was immunosuppressed for about 5 years for Crohn's and didn't actually pick up anything more than usual or anyone else

The head chose his words badly, but I do understand the point about not being able to Wipe down all areas she'll be during a school day. However they should be seeking to understand how they can best support her during this difficult time. Incidents like this our a real indicator of a school's culture.

The last part of your comment was really reassuring and comforting, I'm sorry you have Crohn's but I know you know what IBD feels like and, whilst I don't, I wish I could take it from her because all of this absolutely breaks my heart her going through this as her mum. It's reassuring you didn't pick up much more than usual, how did you feel in terms of side effects?
I'm just praying my daughter doesn't lose her hair. She sits for hours brushing and styling it, we've been told to get biotin for her to try and keep it all healthy.

She's only just, this year, been allowed to use the toilet whenever she wants and that was following her having an accident at school where she was made to hold it and then ended up bleeding and messing herself. Despite the can't wait card, and the initial meeting with the senco to get her original IHP in place. X

The Head hadn't mixed you up with another mum/temporarily forgotten about your dds condition had she? Or had you mentioned it earlier in the conversation?

I don't think the HT was saying that your DDs condition is in her mind. They were saying that because the kids touch everything, the risk of catching anything at school has only really reduced in your mind, not reality, if you just clean her desk and hands. I think they had a point but worded it very insensitively.

I would home school. Kids pick things up constantly and wipes are going to do very little. Plus as you say she's missing a lot of school due to illness anyway, it's easier for you to work around that curriculum- and health-wise, and she can do hours here and there when she can't manage full days.

What does your child's written health care plan say?
If there isn't one then set a meeting to write one up
Provide the medical letters etc

Is there a typo in your OP or are you not in England? I don't understand how she's age 7 in year 4. They turn 8 during year 3...

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

Have your daughter's doctor find some educational material or contact the National support group for your daughter's illness.

Arrange for a health officer to give an educational information session to your daughter's class - similar to the talks they give when a child has Diabetes. Also provide an information pack and a talk to the Prinicals.

Hit the problem with professional education.

Have you had good advice on wiping down desks?
I am completely ignorant of the disease.
Realistically, I think you would have to wipe them down daily yourself when you drop your child to school and also instill excellent hygiene routines in your daughter for after toileting and before eating. But take advice from the experts and have the experts educate the school.

Are you actually kidding me. As someone with ibd I am actually incensed for the first time on this forum to reply. You actually think child should be home schooled and miss out on their entire educational experience because their parents want to send in a kit to help them as they grow. This is beyond moronic.

The headteacher doesn't understand. Personally, I would let it go. The headteacher has said your daughter can do this so let her do it.

You are keeping her safe.

If the headteacher doesn't comply with future requests (if needed) then I would raise issues but for now I would just focus on your child.

Hope all will be well.

I think I may need to. I am pretty much on the brink of giving up my job anyway as she's had so much time off, so many appointments and I have to leave work maybe 3 times a week to collect her from school as she feels unwell and Calpol isn't calming symptoms down.
I just generally wouldn't know where to start with this! Any pointers would be greatly appreciated. It would be a shame because she is such a quiet girl who took a very long time to settle at school and make connections and only really improved in y3 - but her health is more important. The rest will come. X