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?

Good luck Op - your DH speaking to someone is a good step and I think you would also benefit

your son may not go to the prep school you wanted or follow the career path but I think you need to reframe your thinking around that - however we dream for our kids they are their own little people and they grow into their own person - maybe you wanted him to be a doctor and regardless of his disability his dream job is an artist! You are loving and supportive parents but stop trying to focus on putting him back on a fixed path - he will find a way that focuses on his strengths and his passions and you can be his cheerleaders for that

My bad I have explained as I didn’t explain it well original. He is a medic himself and has experienced patients/their families angry at the outcome of his and his teams care same way he had been upset at his teams care. That’s why it’s ironic considering he’s experienced what it’s like to have an angry parent etc shouting for him to go and do the same.

OP, I get it and suspect the safeguarding team will offer support once they’re sure all is well. It sounds like the cumulative impact of caring has caused your husband to reach his capacity in coping. An earlier post suggesting being proactive seeking out some counselling, this and some good self care would be a good plan. Best of luck, you’re both just human.

Thank you.

I am not sure what you mean by fixed path but we are following guidance from specialists in terms of his health.

If 45 minutes of daily physio is the recommendation from the physiotherapist, why wouldn't OP do what is recommended?

It's possible to be angry about the situation but also accepting of it. Accepting the situation doesn't mean not doing therapy to hopefully help her son progress which it sounds like he has up until the botox mistake.

You say your husband is a doctor?
And he verbally abused other doctors and medical professionals...I'd be more worried he'll be struck off and lose his job

As a healthcare professional I actually don’t feel that this warrants a safeguarding referral, if he done it in front of the children and was aggressive towards you or your children that’s a different story. Yes we are not there to help spoke to like that however some compassion from the staff wouldn’t go amiss considering the circumstances.

I can 100% understand why your husband behaved as he did, and in the same circumstances, right or wrong, I would have done the same.

Rationality can finally go out of the window when, after all your efforts for your son’s recovery from that early stroke, a medical mistake occurs to set things back.

No wonder you are both so stressed, and I hope that this situation will be resolved in a way that provides you and your family with support and empathy, and an acknowledgement of the impact this mistake has had on you all.

By fixed path - I mean when our kids are little we see a future ahead for them. As they get older it tweaks but when they have a big block in the road it can be devastating trying to accept they’re no longer on that path.

I guess what I’m trying to say is that rather than focus on trying to get him back on that path you need to look at the other paths that have opened up ahead of him even though they will be bumpier

i understand the emotional rollercoaster and it can be really easy to get stuck in a negative trap - for me it wasn’t anger but hopelessness - getting through to acceptance has lifted the whole house tbh

I don’t think that’s how the GMC operates but I’m also not a doctor so I do not know. We will have to see how that goes

Doctors are only human. We all have our breaking point & this was his. I wouldn't take the safeguarding referral as anything other than social services looking out for you all as a family & recognising you require a little extra support. It's definitely not a lack of confidence in your parenting skills so I would dismiss that thought completely.

It is with the greatest respect I get the feeling you are finding it hard to accept your son does have a disability and despite the fact you are on it day & night he may never achieve the perfection you are both admirably seeking to achieve.

There may come a point in your sons life when he will look back and say although I couldn't have asked for more dedicated parents & I appreciate everything you did for me, I also don't want to live with the guilt of knowing your every waking breath was spent worrying about me.

Wishing you all the very best in the future. You have a wonderful family. Try to relax a bit more & have fun together.

Nice to see sympathy
yes we know he shouldn’t have lost it, BUT, when your child has been given more problems due to negligence you lose it, these are tired stressed parents just wanting the best, they probably feel all their hard work has been wasted

That is what we have been told but we will see how it goes next week.

We are both going to operate with what’s required as he made a mistake, it’s as not in front of the children and he wouldn’t act that was in front of the children.

I’ve reported this thread as it’s pretty much a word for word story from a woman called oliviaclairem. Her son, beau, had a stroke at about 6 months old and now struggles with one side of his body. He had Botox injections about a month ago and they went wrong. The only difference is her husband isn’t a doctor, he’s an electrician. But everything is an exact copy of what’s happened.

Oooft OP the stupidity of some of these replies is astounding. Anyone suggesting it’s ’unreasonable’ or ‘strange’ to still feel anger after ONLY four years do not understand trauma, particularly trauma relating to a sick child, at all. OP I’m not going to comment on your husbands actions other than to say I understand. My child had a stroke at birth, we spent the first year in hospital with him, we ended up down the neurosurgery pathway and like your child, we see basically every specialist under the sun. I recognise your frantic worry, because that is my reality every day. My son is doing so well (now, though he nearly died on several occasions his first year) and yes it is likely (but not assured) that he’ll be ok as a teenager, but when you’ve been faced with the possibility that their future could look profoundly different the trauma of that never leaves you. It wasn’t long out of hospital that I came upon a woman in Tesco. She had parked next to me (in a parent and child space despite no child so I was already irked) in her expensive car, she was very well dressed, expensive handbag etc. I saw her in the baking aisle buying the value eggs which I deem horribly unethical and shouldn’t be bought unless you have no choice and I totally lost it at her. I gave her both barrels saying how she should feel ashamed, she clearly had the financial means to buy the better eggs but chose not to etc etc. It was utterly unhinged on my part. Eventually the red mist cleared, she stared at me in shock, and I turned and bolted out of there, horrified at myself. It was so, so unlike me but the stress and trauma of everything id been through utterly obliterated my ability to see reason or stay calm. I fully see now it was insane and wrong on my part, but at the time? Didn’t really matter. My son had nearly died, he was so sick, I was hurting, other people can bloody well hurt too. What I’m saying is, I fully understand why a traumatised and stressed father would lash out the way he did. It doesn’t make it ok, which you both know, but I can understand it. Of course you’re putting on a united front with him, you need each other as you’re the only ones who have witnessed and endured what you have together. I firmly believe it’ll be ok and the safeguarding issue won’t amount to anything, and give yourselves some grace. I really hope you’re son is doing ok, I understand. And it’s horrific. X

As I said upthread, focusing on a “ normal “ future for your DS might be preventing you accepting the possibility, or more of him being disabled. That’s not helpful for any of you.

It’s difficult, as I know , we all want to see into the future, and want the best outcome for our DC. But it’s easy to waste years on this, and miss the many pleasures and indeed achievements your DS will make that will bring joy to you all. It’s a journey, and couples can move at different speeds. But moving through the grief at the loss of the DC you thought you would have, and the anger and denial phases is crucial for not just you and all your DC, but your wider family and friends too.

@ForAvidTraybakecan you address the fact that this is incredibly similar to the story of a well known TikTok poster?

give a break will you

OF COURSE he was wrong on all level.
He's also a dad with a struggling kid, people get emotional. No need to push him down even further.

You said in your OP, ‘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.’

OP are you Olivia from TikTok or a troll? You’ve obviously seen the comments about it so just answer the question

In terms of social work risk assessment you have 3 children 4 or under, which ticks a risk box. One is more vulnerable with additional needs which ticks another box. The dad is shouting and making threats at doctors, the mum is crying most evenings, you have the ongoing stress and pressure of the physio, care needs etc... it's bound to have some impact on the other 2 children too. If socal services offer some help maybe think about accepting it. Child in need plans and similar aren't meant to be punitive. If the cracks are appearing it would be understandable and there's no shame in admitting it.

We are getting him on the path that is required by professionals who deal with children who have had strokes. I will continue to follow what we are advised I am not a doctor I do not know much in terms of medicine all I know is that the from 6 months till now the advice we have been given to guide and help our son has worked tremendously well.

Hopefully we can go through the stages of grief and not be stuck but for now we do want the very best possible healthcare for our son, not to ‘cure’ him but because that is what is recommend by professionals for his health care. I was to give him the best possible chance that we can he’s still very young he has a chance at recovery but that requires us to be proactive.

I doubt it’s Olivia. She’s off on a camping holiday at the moment and I don’t think anyone is stupid enough to post like this, while also lying about a pretty critical part of the story. @ForAvidTraybake anything to say?

OP I know you’re seeing our comments.

Are you Olivia?

I also doubt it, but she’s still replying so I decided to ask.