Can I refuse to see the same snotty paediatric consultant on the children's A&E ward?

[viiswi]

Hi

My son gets palpitations and an ambulance has been called to school a few times and we go to the kids A&E department.

My issue is that my sister has Brugada Syndrome and Im being investigated for it. Its also genetic. Its an electrical fault in the heart which can result in a sudden cardiac arrest.

Each time my son has an ECG it's normal.

This snotty consultant always says why are you here? Your son is fine.

She knows I suffer with anxiety, Im not ashamed and I tell people.

She always asks me if I am having help with my anxiety.

I have gone private to see a top paediatric cardiologist in London who says we should try and catch whatever is happening on my AliveCor personal ecg monitor.

I went to the Brompton a couple of weeks ago, to start my investigations and I did let the school know.

As the snotty local consultant has written a letter to the school saying we don't need an ambulance if my son has palpitations - its made me so angry. Even the London doctor said she is wrong.

Why would the school listen to her and not the top London chap?

Also, the school has decided that if my son has palps, they don't have to tell me until after school!

Surely the school should listen to a cardiologist and not a general paediatric consultant?

I am FUMING!

Also, my son had a holter monitor for a week and nothing showed.

SNotty said maybe he is having SVT palpitations.

HOw on earth can she assume this without any evidence of it on the monitor?

You always have the right to request a second opinion - can you get your GP to refer your child to the Brompton? It sounds like there's a good reason for going to a specialist unit where they will be very familiar with rarer conditions (and I agree, the Brompton are brilliant).

On the one hand, the consultant seems to be acknowledging that it's hard to be definitive because they've not yet managed to record one of these episodes. She/he may not be saying "ignore it" but may be saying that your child has seemed stable when examined so doesn't need to go via ambulance (but still needs a hospital check)? On the other, in those circumstances with your family history, it seems unusual not to repeat the holter...

Hi

Thank you.

Yes, we saw the cardiologist, Piers Dauberney, from the Royal Brompton.

He was lovely.

Im just angry the school are listening to the local paed who does not specialise.

Piers told me the school need to call an ambulance if my son is still having palpitations after 10 minutes and for the school to call me so I can take an ecg on my special monitor.

I feel they should call me straight away and not leave it untl the end of the day. It's not their call to make.

Imagine my son did have Brugada and went into ventrical tachicardia, and the school never called me as the local snotty said not to.

The letter from snotty was from June last year and the school have not asked me for any updates. How dare the school change my son's careplan without talking to me.

Im so angry and upset with them.

Thank you for the reply, I appreciate it xx

Do you have a letter from him? That would over-ride the local doctor, both in terms of specialism and timing. Are school open to a meeting to agree a plan for the future? Going against the specialist is surely a safeguarding risk, and the school wouldn't want to knowingly put a child at risk. It's incredibly hard to trust school (or anyone else!) to do your caring job when your child needs medical supervision

Hello

Thank you so much again.

I do have a couple of letters, I will have to bring them in, although I thought I had?

Ill try to get a meeting with the person at school. She is horrible too.

I get so anxious, I feel she is talking down to me. I know a lot about Brugada and how serious it is. I feel I will either end up crying or smacking her in the face!

Ill update tomorrow.

Thank you xx

Has your Brompton cardiologist actually written to the school? It sounds like the school are just acting in accordance with the letter they've actually had addressed to them which is the one from the local paediatric consultant. Get Brompton bloke to write to them.

Hello Madcatter

That's true. I shall start by copying my letters and handing them in.

My main concern is if we did go to A&E, wold we have to see snotty or could I refuse and ask to see someone else.

I know my friend's daughter has been under care too, and she wasn't impressed either.
xx

@op i can understand your feelings. I posted something recently about dd who has been sick. We met one arsehole who got my nerves and he won’t be involved with my dd again now if we are back at the same hospital - won’t be doing any tests etc.

My advice would be to trust your instinct. I know that’s hard when you have anxiety and it’s difficult to tune in ie is your gut telling you something or is it nerves. Go with the cardiologist advice for now and tell the consultant you find her attitude about it casual and rude.

I’m shocked that the school are following her advice and ignoring yours. There would be hell and i mean hell to pay if I was you. Your child: your rules. Not the decision of the doctor or the school. You need to get a handle on the situation and get back some control.

Lemongincosy

Hello!

OMG - casual! The word I had been looking for the describe snotty's attitude! Brilliant!

I shall go in to school tomorrow and TELL them!

A cardiologist certainly overrides snotty!

Casual I love that!

Thank you xx

Can you afford to get another monitor for your son? I suppose the school would have to have the app installed on a school device (or maybe his teacher's mobile?) to get a recording if it happened in school. It's such an easy thing to do, and really important to catch when he's having an episode. I've got a Kardia monitor - it's tiny, fits in my purse, and I recently got a diagnosis after 20+ years of palpitations that had never been caught on an ECG (always normal in between episodes). My cardiologist said that the quality of the recording was great, and allowed him to diagnose confidently. Sounds similar to the one you've got.

@viswii i think you have to advocate and be ‘that’ parent sometimes when it comes to health of dcs. It must be very stressful suspecting something that serious and feeling like you have no support from the doctor.

I would ask her what approach she would take if it was her own child! Sure the tests might be incovenient, expensive and some false alarms but i don’t think you can be too careful on these things because what’s the alternative?

Good luck with cardiologist, sounds like it’s been a battle but hopefully things will improve now xx

I’m shocked that the school are following her advice and ignoring yours. There would be hell and i mean hell to pay if I was you. Your child: your rules. Not the decision of the doctor or the school. You need to get a handle on the situation and get back some control.

Maybe I'm reading this wrong but no responsible school is going to ignore medical advice in favour of what a parent says.

Op needs to get the most recent advice to the school and ask for a care plan. But that needs actual advice relevant to the calling of ambulances, wearing of monitors etc.

@noeuf i don’t know re the legislation etc and i haven’t yet been in that position but it does definitely sound like OP has not had input and they are going by a decision from a consultant she does not agree with.

Although yes - in certain cases it is obviously necessary to override parents views for various reasons but in this instance i think the school are probably quite glad they don’t have to action her ds palpitations with an ambulance. Less hassle for them but doesn’t seem safe or fair for ds or his mum. So I would be angry and yes sounds like a formal plan needs to be put into place.

It may be better to email the specialists letter to the school so you have a paper trail.

It may be worth sending that letter to PALS at the hospital too asking them to get the paediatric doctor there to take your child’s condition seriously.

I would also carry the letter in my bag so if you do end up in A and E you can show the letter.

You need to get a care plan drawn up, with the specialists advice incorporated.

If unhappy with the paeds care you can complain to the trust and give them the whole story.

Bet the paediatric cardiologist hasn't bothered to copy in the local paediatric team on their letters, so they've not got the info. So fucking annoying when that happens. But so many of them only write to the GP and parents and completely forget the actual hospital the child tends to do to when ill. Ask the cardiologists secretary to send copies of all letters to the relevant local consultant, and you may well find things change...

Write a letter of complaint to the a and e trust and include your cardiologists letter.

Sooo fed up of ‘mums anxiety’ being relevant - either a child is sick or not - leave mums alone!