To call up maternity unit and let them hear the meltdown they've just caused my wife.

[MissusWrex]

Ok well I wouldn't really do that but am feeling very angry right now.

This is my other half's account. She has autism spectrum disorder and dyspraxia.

We had a cesarean section booked for this Thursday. This morning we recieved a call asking us if we could move it up to tomorrow.

We had a discussion about it, checked whether we could change childcare etc. and my wife agreed after she'd worked it through in her head.

We got everything packed and ready. Sat down five minutes ago and received another phone call.

Our appointment had to get changed to Friday. We were given no choice about this, couldn't change back to our original date. Just a sorry, it's got to be Friday now.

We can't get childcare for Friday though I appreciate this isn't the hospitals problem.

What I am very angry about though is that now my heavily pregnant wife is having the mother of all meltdowns upstairs. She is screaming, banging around and I'm just praying she isn't hurting herself. I can't restrain her obviously and she is immensely strong during these episodes which are actually exceptionally rare these days.

It has been a difficult and complicated pregnancy.

AIBU in thinking that maybe they should have just given a little extra consideration given her disability and not changed dates twice in the space of a few hours?

Should I call PALS, I just want to let someone know what this has caused.

In the hospital context, we don't usually ask men who are suffering to put that suffering aside because someone else is seriously ill or dying in quite the same way women are asked to.

It might be that there was an emergency and someone is at risk of death. Or it might be that there is inadequate staffing at the best of times and someone has called in sick - even a small bit of extra pressure easily results in this situation.

In any case, if women don't complain and raise situations like this with the Supervisor of Midwives, there is no potential for change and the opportunity to alleviate the suffering of the next woman who is in this situation is lost (and autism is not a rare disorder, so this will likely happen again).

Unless you specifically tell the hospital that last minute change is a serious issue, how are they supposed to know?
What if they know that and still had to cancel? They know how unpleasant that is, they dont do it lightly.
They didnt handle it badly. The way they handled it didnt suit you, but yours is not the average situation.

What would you have them do differently in the case that there is no way the procedure can go ahead?

"In the hospital context, we don't usually ask men who are suffering to put that suffering aside because someone else is seriously ill or dying in quite the same way women are asked to."

What absolute bollocks. Elective surgeries are scheduled, cancelled and rescheduled every day for both male and female patients alike. I grant you that fewer men need c/sections though!!

I've been astounded by some of the utterly ignorant attitudes I've seen displayed towards ASD in this thread by some members. God forbid those ever need to have their eyes opened to the additional needs that come with ASD, or the fact that people with ASD are people too regardless of how they cope with certain situations. Utterly ridiculous, shame on all of you for making OP justify his wife's parenting skills!

OP - I'm glad your wife is feeling better, I'm sorry the hospital caused such upset in the first place and I'd still suggest it's worth even having a conversation over the phone with PALS. Also, good luck with the new arrival!

Oh you poor thing OP. Please just be with your wife and baby at the moment to ensure she doesn't hurt herself or your baby, but please write a firm letter to the hospital explaining why you are so unhappy at your treatment. Maybe,just maybe,it might make them think twice in the future before doing the same thing to someone else.

vb2014 Wed 13-Apr-16 15:01:33
RedToothBrush I wasn't emotionally blackmailing anyone? That's quite a statement to make! I was trying to show the other point of view.

You weren't?

Why do you need to know the other side of the situation, apart from there could be an emergency.

Why all the bollocks about which phonecall would you rather have? It was TOTALLY unnecessary.

That's emotive shit. You pretty much told the OP to pat his wife on the head and just say 'there there'. Utterly patronising and belittling.

Its trying to silence someone because they don't have a problem that is as big as someone else's.

RedToothBrush really??? That's what I said! I said to offer her support... Slightly different!! Not patronising at all!

Sometimes in life things don't go the way we want too and some people have difficulty dealing with that. Changes to some people are extremely difficult to manage and they such as ASD lash out. The gentleman should put his wife's needs first yes! Agreed, should ring the hospital so they could hear her screaming and blocking a phone line to an already over stretched service then no! He should support her and comfort her. They should discuss the changes and try to come to terms with it. I'm sure the lady has some form of key worker in place or a community midwife who she or he could contact to discuss. I have a disabled child (before you start telling me I'm ignoring her she's sleeping) and believe me I know how upsetting change can be. Appointments get cancelled all the time and sometimes I wish they wouldn't but they do. We pick up the pieces and carry on. The original post I'm sure was a gut wrenched reaction to the phone call.

I haven't read through the full thread, but I must say that I am surprised at the amount of people that suggest not to flag it. As a mw and mother of an autistic child, I feel very strongly that hospitals need to be aware how badly such changes can affect a person. I am very very aware how and why c/s may need rescheduling last minute, but that changing within such a short time makes me think the planning wasn't fully confirmed or thought out before phoning. Equally I don't think many hcp are fully aware of ASD and if people are a little more aware of how changing plans affects people on the spectrum, then they would do their utmost to handle it as gently as possible. I suspect the change of date would have bed checked & triple checked before phoning.

Making a fuss tends to get you better care imo, not worse!

Seriously this is the reason I stayed away from these boards for so long and just read the comments. Anyone with a different point of view is absolutely obliterated! By the way I'm glad the original posters wife is feeling a lot calmer today and wish you well for Friday and the future!
I'm off bye!!

This thread is exactly why I don't tell many people about my autism. The ignorance shown here is vile.

Obviously: don't phone the unit, get in touch with PALS or the consultant directly or possibly the head of midwifery/maternity services. Your average mw on the ward wouldn't be able to do much bar transfer you to any of the above.

OP just wanted to wish you and your wife all the best for Friday. You have dealt with all of this magnificently. I hope it all goes ahead now without any further hitches

I had to have elective C-sections because I had a medical condition and not one of them happened when they said it would either because of emergencies or staff leave. I found it so stressful, felt really anxious that I would go into labour which would have been disastrous and genuinely felt bereft - probably the pregnancy hormones helping my emotions along nicely. If you suffer with ASD it must be awful especially as change can often be devastating. I certainly think that change will never happen if you don't say something so I would alert the hospital of the problems this sort of thing causes and make a suggestion of how they can be more helpful. If they are caring professionals they will want to do their best by their patients and they won't mind at all. It doesn't have to be a complaint, just an information sharing exercise. Good luck, I hope all goes well from now on.

OP, sending you and DW 💐 I hope things go smoothly from here on...

I'm a dr & also have DS with ASD.
I'd suggest having a chat with one of the consultants or the supervisor of midwives asap; not in a complaint way, but to flag and seek appropriate support for your DW. They are (hopefully!) likely to be sympathetic, but just might not really have any experience/insight into the challenges linked with ASD. You may need to prep a bit on exactly what will help...

I didn't really understand, before I had DS. I had a week of community paeds placement & met several children with ASD - but I don't remember ever doing that much about adults with ASD at med school. (But even in 5 years, there's always a limit to what can be covered).

Good luck. And thank you for bringing this here & coping with some fairly rotten messages. Talking about it normalises and educates people - each little step helps a bigger community.

Just wanting to wish all your family all the best for Friday, hoping everything goes well then and in the future. 💐

herecome, with every respect, it's nonsense to say the hospital had no way of knowing that she would react that way. They knew about her autism, they knew about her past obstetrical history. They had plenty of ways of knowing.

Knowing someone has autism (if they did) and knowing that she would have a meltdown should she be bumped down the list are different things. No one knew she would react like this.

The OP said she's had one approx. every 4 years so they're rare.

The ignorance shown in this thread is appalling. Most mums with disabilities and long term health conditions that I know (and I know I lot as I work in this field) are fantastic mums because a baby is usually planned and thought about very carefully.

I started a thread on epilespy once on here and was basicly told I was a risk to my child. Made me feel fantastic

herecome, just look at the OP's posts. He said it was years since she had had as bad a meltdown, not that it was years since she had had one; he also said she has shutdowns. They have another autistic child. It's been a difficult pregnancy. His wife has a uterine abnormality, a number of previous losses (two in the second trimester) and a lot of problems with IUGR and reduced movements in the last few weeks. She is majorly anxious and convinced the baby will be stillborn.

And look at posts on here from people who have had similar issues without being autistic, and how upset they've been to have arrangements changed at the last minute delaying the birth.

How difficult is it to work out that in OP's wife's situation you do your best to minimise stress to the disabled patient?

'Screaming and banging around'....seriously? At 9 months pregnant? She needs to think of the child and I hope she can cope when it's a difficult toddler because that is just not acceptable behaviour for a parent.

I've got nothing to say on some of the comments on this thread other than

OP hopefully things have calmed down now and you can have a conversation with your wife on the next step.

Nicki RTFT. And take your attitude elsewhere.

LondonNicki: FO and educate yourself about autism.

Nicki do you understand what constitutes an autistic meltdown?! The reality is you can't think rationally because you've been pushed too far. I too am seriously disturbed by the lack of understanding about autism on the thread.

OP I hope it all goes smoothly with the birth.

"How difficult is it to work out that in OP's wife's situation you do your best to minimise stress to the disabled patient?"

It isn't difficult and I managed to understand the situation perfectly. I also haven't suggested anything contrary.

How difficult is it to work out that a shutdown, breakdown, meltdown or whatever is, by its very nature, unpredictable.

I haven't pretended that this was an excellently handled situation but part of Data Protection is revealing the minimum amount of data possible. Especially when it's identifying or, as someone suggested, the arranging of appointments is done by a third party and not even someone on the ward. Was the person swapping around the appointments supposed to read the full medical history and then guess (for that's all it would be), that this would create such anguish for her. The daughters mental issues wouldn't be linked to her mother's anyway so the autistic child is a red herring.

I have nothing more than a Red Cross certificate so don't purport to know exactly how the system would work but a medical professional up-thread said that the person adjusting the list would only have relevant information about the health of the mother and in utero child ie. gestation age, eclampsia etc.

I don't think that the hospital can be blamed for the situation and the terrible time the OP and wife are having is bad luck - for want of a better phrase. I'm sure the appointment wasn't cancelled so the nurses could clock out early and get to the pub.

What could have been done differently? Earlier notice is better. Perhaps the second cancellation was due to a second emergency. Most people, perhaps especially ones with mental issues, would like as advanced warning as possible that their operation has been pushed back. Perhaps, if it were a database situation, any additional needs such as mental problems for the mother should appear but it is difficult to argue that they would ever trump a physical issue that would endanger the life of a mother or un-born baby.

I n my post, I did nothing more than wish the parents good luck and offered my view that the hospital have, according to the limited info. we have, done nothing wrong.

How difficult is it to work out that a shutdown, breakdown, meltdown or whatever is, by its very nature, unpredictable.

No, without wanting to generalise too much, people with autism tend to have a particular difficulty in dealing with unexpected changes in plans. That tendency is likely to be exacerbated with someone who is already extremely anxious due to problems with the pregnancy and past pregnancy loss. It really isn't difficult to predict that if you throw two unexpected changes at a person in that position within a short space of time, they will find it incredibly hard to handle.

Was the person swapping around the appointments supposed to read the full medical history and then guess (for that's all it would be), that this would create such anguish for her.

No. But there should have been something in the nature of a large notice on the file alerting such people to the need, perhaps, to refer the file to someone up the line who is fully informed about the patient in question and better trained to deal with the situation. Where the hospital has gone wrong is in the failure to put something like that in place. It's the basic duty to make reasonable adjustments.