Unsure how to get Daughter help

Tokalosh666

Hi,

1St time posting here, so thank you.

My daughter, now 14yrs old was diagnosed 18months ago with POTS is in medsto try and help her through the day and meds to help her to sleep. Every day is a struggle for her, but she puts on a brave face but inside she is exhausted.

We Have informed her school of the diagnosis many times and to be honest they just ignore it. She has been accused of being lazy and not focused, day dreaming, amongst others and it's not fair to her as it really upsets her.

The latest incident was a day trip, sith the school, we emailed the school to enquire if there would be much walking, the response was "no". Again we.reminded the school about her POTS.

Fast forward, daughter starts texting, she feels awful, she is exhausted, sweating, shaking, feeling sick has headache and has been walking for an hour! Told her to sit down and chill, tells us she is not allowed to !

To cut a long story short, once we informed the person in charge of her group about her diagnosis, they went off the deep end and called an ambulance as daughter looked so unwell ! OH drove for an hour to collect her as they would not let come home in the coach in case she get very unwell ! Daughter passed out in car all the way home and slept until 10.30pm. OH emailed the head teacher to enquire why this happened and was there a risk assessment carried out- thiswas Friday evening, today in Tuesday,, not a word from anyone at the school. Daughter is still unwell due to the exhaustion from the Friday.

I was so upset and angry, I have applied to have an EHCP assessment carried out, before something happens to our daughter whilst she is school.

Does anyone have any advice or experiences of schools totally ignoring an invisible illness and putting that person in danger?

Many thanks.

Kimmy87

I would look into raising a safeguarding complaint against the school.

In the first instance this should be done within the school (they should have a safeguarding officer), or you can contact your local authority education department who will also have the same.

Tokalosh666

Even the SEN has ignored the email and they are safeguarding!

We will telephone the heads PA today and ask what the next step is as we would like answers.

Daughter Still feeling exhausted and now has the usual run down sore throat, but like the trooper she is she has.gone in to school,on the promise we will pick her up if she feels worse.

TY

Annie_Scope

Hello @Tokalosh666

Welcome to the community. Sorry to hear this happen to your daughter in school, I can imagine how upset and frustrated you must feel.

School have a duty to protect the children in their school, and should take your daughters diagnosis seriously to ensure her safety. It sounds very frustrating they have not listened to you, I would certainly be raising this issue with school to ensure it doesn't happen again.

The school should have a care plan in place, which all school staff should be aware of. Have you shared the reports from her diagnosis with school? If you have a look at the POTS website which I've linked below, there is some information for going to school when you have POTS. I would share this information with school, and ask them to write a care plan covering what to do when your daughter isn't feeling well. You could see if their is any training available for school too, so they have more awareness of POTS.

https://www.potsuk.org/managingpots/school-and-pots/

I hope you and your daughter are alright, and I hope she is starting to feel better. Keep us updated on how you get on with school.

Annie ☺️

Tokalosh666

Hello, many thanks for your reply. Yes, the school are very aware of her POTS diagnosis, we have sent the Head of year, SEN, safeguarding depth, tutor as well as all her teachers the POTS information, but nothing is "sinking in"

We have a telephone call with the Head of school shortly, and I've asked for an EHCP assessment to be carried out, but, we all know how long they can take.

Apart from going down to the school and calling the leadership team and teachers out on their attitude, which we would not do, we are at a loss as to what is so difficult for them to grasp. Off school today again as so exhausted. Woke up at 11am today after getting picked up from school at 10am yesterday, slept until 8pm, woke up had dinner and went back to bed again a 9pm.

Kids has never had a detention, a warning from the school, so they cannot say she is an issue at all and we have the diagnosis from her consultant which we shared with the school, numerous times.

Beyond frustrated by their attitude now.

Annie_Scope

https://forum.scope.org.uk/discussion/comment/976659#Comment_976659

I completely understand your frustration. I would definitely complain about what happened on the school trip, as it sounds like it has had a unnecessary negative health and wellbeing impact on your daughter.

I would also push for school to write a detailed Care Plan around her POTS diagnosis, with different levels of intervention dependent on whats happening. I would ask to see it and ensure you are happy with it before it's finalised. If they don't agree to doing this, I would ask your GP or specialist if this is something they can provide for school.

Sounds like you are doing a great job at supporting your daughters needs, and giving her the rest she needs.

Annie