DH made our son's hospital situation worse? Now we have a safeguarding referral!

[ForAvidTraybake]

DH and I have three children. Our eldest turns 4 in August. When he was just 6 months old he had a stroke. It was the most terrifying thing we've ever been through.
Thankfully, because he was so young he's recovered amazingly well. Most people wouldn't even know he does have a disability. It’s hidden and we have to advocate for him while he’s still so young. I worry for much the funny thing is I know by the time he’s a teenager he’ll tell me off for worrying so much.

However, it's taken years of hard work to get him where he is. Six mornings a week either I or DH gets up with him first thing to do 45 minutes of physiotherapy before breakfast because that's when he's in the best mood. He naturally favours one hand because of the stroke, so we're constantly encouraging him to use his weaker hand.

He also has regular appointments with specialists and therapists. Childhood stroke is quite rare so we've been fortunate enough to be under some fantastic specialists. DH has even been on a rehabilitation retreat with him to the Lake District etc.

Last week I took him to London for Botox treatment in his weaker hand to help with the muscle tightness. Medical Botox used to help improve function, not anything cosmetic. Unfortunately something didn't go to plan during the procedure. He's okay, but we've now been told we have to wait around three months to see what the outcome will be.
I can't explain how upsetting that's been. We've worked so hard over the last few years to give him every possible chance, and all we want is for him to be able to do everything other children can. I know I'm probably an over-worrier and one day he'll probably be a teenager telling me I worried too much, but right now I can't help it. I've cried most evenings since it happened because I keep thinking about the "what ifs", even though deep down I know he'll most likely be okay.

DH has been just as upset but his reaction was very different. He went back to the hospital to speak to the department involved and completely lost his temper. He shouted, swore and made threats in the heat of the moment. I understand why he was so angry because this is our child but I also think it crossed a line.

We had intended to make a formal complaint about how our son's treatment was handled. Instead, the hospital have now made a complaint about DH's behaviour. They've referred the situation to the safeguarding team and we have someone coming to visit our home and speak to us. They've also said they're concerned about the impact all of this has had on me because I've been so upset & DH mentioned my mental health too.

The funny thing in all of this is that DH is a doctor too and has acted this way at other specialists who are trying their best to help our son. I’ve had to take time off work as I am constantly worried, DH will need to take time off work too. It’s all too much for the both of us if I’m being honest.

I honestly feel like everything has spiralled. We've spent years doing everything we possibly can for our son. Our whole lives revolve around his appointments, therapy and helping him reach his potential. Now it feels like the focus has shifted away from what happened to him and onto us.

AIBU to think DH's reaction, although completely understandable as a frightened and angry parent, has probably made the whole situation much worse?

Has anyone else ever had a safeguarding referral after a parent lost their temper with hospital staff?

You need counselling to deal with the anger because as much as you think you aren’t, you will be transferring that anger to your son. He is the one who has to live with his disability and the more positive he can be about it the better - focussing on what he can do rather than what he can’t.

Okay

I have said it’s a misunderstanding within how I was explaining. He’s a medic he’s had to deal with patients and their families shout at him. He’s also had to deal with his colleagues making mistakes

I can see how he's acted out of line so I'm not saying the way he escalated was correct. However in his situation I'd probably have done the same thing. I don't think I'd ever recover from the stress and terror of my six month old baby having a stroke. I felt dizzy just reading about it. Give him some grace; he's showing up for his son every single day as he should be, as you are, and he's finding it hard to keep his reactions in order because he's traumatised (again, as you are). Nothing negative will come of the referral because you're both obviously doing everything you can to support your child but maybe some positive interventions can be made that will help you all cope with the stress a bit better.

I haven’t said I’m not angry

Your comment doesn’t make any sense on what I said.

This
My heart goes out to you all.
Take care

From patients and families trying to help your son? Your story is fucked up now.

The funny thing in all of this is that DH is a doctor too and has acted this way at other specialists who are trying their best to help our son.

I mean not that you think you aren’t angry but that you think your kids don’t feel/see the anger

Op, I am so sorry to hear what you have been through and as a fellow SEND mum my heart absolutely goes out to you.

I have some practical suggestions. On the medical error side please ring the AVMA helpline. They are an excellent charity and exist to give legal guidance on medical accidents.

On your and your husband’s wellbeing, I would recommend two things. There is a wonderful book written by a mother who is also a clinical psychologist for parents like us. She has a PhD in this area and it is an excellent book which really helped me process my own feelings around all this. It is called Day by Day, by Jo Griffin. Working through it really helped me to understand both how I felt and what I needed.

Also maybe consider seeking some informed counselling from a disability experienced therapist. Jo maintains a list of these on here website and many of them offer virtual sessions online. I am going to post the link in a moment.

www.avma.org.uk

It isn’t, you just seem to lack reading comprehension on here and look for any reason to have a go at the OP

I can identify with some aspects of your post. Our now adult son has cerebral palsy & other issues, that required numerous hospital stays and appointments. Also, my husband is a doctor.
What we found over the years, was that we were treated as health professionals rather than as parents. This meant that the professionals felt that we could cope and didn't need support, despite having other children. Also, our son's twin sister died as a baby. However my husband never abused the hospital staff.
Looking back, we should have received social work support. It is understandable that your focus is on your child, but you need therapy to address your anger. Self care is vital as well.

Op this is a major, major piece of information! Your dh’s whole life has been shaped by the intense trauma of losing his brother down to medical negligence!

He is being triggered very very badly by the events with your son, to the point he can no longer contain his emotions. I am imploring you now to get him some help, potentially he has PTSD. He can’t be expected to manage this alone. Please tell the safe guarding team, but don’t wait to address this now.

Your dh has unprocessed trauma, it can surface due to intense stress, he needs empathy and on going professional support.

www.waterstones.com/book/day-by-day/joanna-griffin/9781911383536

Who are trying their best? Many medical.professionals really don't and act arrogant and entitled, putting their patients at risk.
No.idea what happened here or if that was the case or not, but on mumsnet doctors can do no wrong which is just so, so far from the sad reality of generalised incompetence and ill-practice so many patients face.

Tbh it’s not the best by him but I am constantly gobsmacked by the ineptitude, terrible bedside manner, lack of compassion and general crapness of many in the medical profession. He probably knows bad treatment when he sees it. You can and absolutely should make your own complaints. They are probably trying to distract. I hope his reaction triggers some self reflection for him and professional scrutiny for them.

OP are you the person from TikTok? Massive coincidence if not.

but in hospitals and anything medical theres posters about how to treat staff etc so yes i can understand why he reacted but jesus. that said hope all goes well op

Anger is a stage of grief on coming to accept your child as they are
But it is not ok to lash out
Get some therapy input.

Dr. Ann’s Corner: Cyclical Grieving for Parents of Children with Autism | Hopebridge Autism Therapy Center share.google/l6gwqkIWO7eRY6USA

This is the main link to Dr Jo Griffin’s website which is for emotional support for parent carer wellbeing: https://www.affinityhub.uk/about-affinity-hub/

The list of experienced counsellors in this area is on her site here: www.affinityhub.uk/therapy-counselling/

OP is the one who said they are trying their best. Not pp, pp quoted from the OP.

That is autism but same applies any disability

This - his response was most likely related. It changed the everything.
I find it odd you’ve not seen the the connection prior to this.

of course it’s not ok or acceptable but there’s a trigger (in the correct sense of the word) that’s clear.

he needs help urgently.

I know they do we but we do our very best for our son he’s still very young to really comprehend and the others are still too young.

We do speak to professionals but there’s only so much that can be done with a 3 year old he’s not going to talk about his feelings the same way a 10 year old would but he does therapy more so art therapy and there’s space and room for him to talk about how he feels but also sometimes he just wants to play with Lego with his counsellor and our little ones are still very very little.

I agree with this. You need to be able to keep going without going off the rails. It must be very very hard.