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.

Well, I am 'neurotypical' (AFAIK!) and after my first pregnancy ending in an MMC at 12 weeks, I was a complete mess by the time I got to late pregnancy second time around. When I went overdue by a couple of days and was told by the midwife that my cervix was 'unfavourable' for induction, I lost my shit with my DH when I got home and started ranting about how this baby was never coming out and the NHS would make me go to 44 weeks and we'd lose the baby and and and and...

At 1 week overdue I begged them to induce me and so I had my induction scheduled for 11 days past due date - the earliest they would consider - but went into labour naturally at 10 days anyway!

So you and your DW have my sympathies. Waiting for baby to arrive when you have waited so long already and have previously experienced losses is excruciating even for those of us without any complicating conditions.

It's a tough situation for anyone. You are doing the right things. I hope all goes well. No more changes, solved childcare and a happy healthy wife and baby.

This thread had been an eye opener. I always thought a meltdown was a form of "tantrum". It had been educational to read about what a meltdown really is. It is so easy to judge when you dont know. I dont know if people are being deliberately ignorant, i think its just the lack of education. People have their own lives and problems and if autism doesnt touch them they just dont realise. Anyway i am very happy to have this knowledge. It sounds very distressing for all involved. Is there anything anyone can do for a loved one when a meltdown is happenning? Or do you have any warning that one is a about to occur? And what do you do if they are clearly hurting thenselves? I have made a new friend whose eldest son is autistic and i would like to be able to help support her appropeiately. I hope your wife has a much calmer and easier pregnancy/delivery from here on in. I agree you sound like a wonderful supportive husband.

I think that your wife's reaction and the hospitals actions should be kept apart. They had no way of knowing that she would react that way as most people wouldn't.

You have no idea why it was cancelled. I could have been to save another's life which, without wanting to sound harsh, is much more important than your wife's reaction.

When my OH was scheduled for a life saving operation, it was postponed twice as theirs wasn't time-critical but the other two were.

Good luck with the birth. Exciting but stressful times.

Hi MrRex and your Missus,

I'm very shocked at some of the comments that have been made on this thread. I'm so sorry some folk seem to have left their decency on the shelf and have run off their fingers before engaging in 'do as you would be done to'.

Mr and Missus, I hope you have a very happy and comforting birthing experience when you manage to have the C section.

Mr, you come across as a lovely husband, it's great to see how 'together' you have things. So often guys just get on with it and we ladies don't get to acknowledge to good guys!

I have nothing more to add but I will borrow this from PP lilybloom - However, What I really want to say is you have come across as such a lovely person, very calm, reflective, strong and kind (especially to the less understanding people). Thank you for raising the understanding of autism and challenging the "wrong" views with such integrity.

Good luck to you both on Friday

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.

Omg what a storm! I read the beginning of this thread last night and woke up thinking "damn right you should raise it, her ASD is a health issue same as deafness and wheelchair use and should be taken into account the same way those issues are" but now I've read the rest and it's been said so many times!

But to mumsnet HQ, mumsnet would be the last place id come for moral support, there are a lot of nice people on here but also a lot of really judgemental critical people and, being naturally sensitive, I'd "hear" those and not the nice ones!!

I'm a midwife and I have on occassion had to ring women to tell them we need to put their section date back a day or two. Believe me nobody is happy and I think most people cry/shout/are angry.

The times it's been done it's all been for safety reasons. So there might be another woman who is poorly and the Drs are desperate to get her to 35 weeks to give baby the best chance and 35 weeks just happens to be the date when three other people are already scheduled. One of those three needs to be moved as we can't do four elective sections safely.

We won't do elective surgery after 5pm for safety reasons which I believe is standard. After 5pm there's only one paed about, only one obs reg (the one doing the surgery so no one left for emergencies), consultant may have left. Even when there's three scheduled sometimes we don't get all three done and someone has to go home.

However we could easily have done what has happened to the OPs wife to someone with similar issues without realising. And this thread has certainly made me think about the proceedure at our hospital. Our section list is just a basic list of women's details, gestation, reason for section.

We wouldn't know anything extra such as if they were disabled, had had a previous stillbirth until the day of surgery when we get the notes (unless this was the reason for the section). I think we probably ought to start putting such details on our basic list to hopefully avoid such things.

Though I supoose for all the OP knows the other woman on the list may have had even more pressing reasons for not cancelling their surgery such as a previous still birth or pre eclampsia. So sometimes even with all the best will in the world someone with ASD may still need to be moved however upsetting that is. But yes, it certainly sounds like it could have been handled better.

I wonder how anyone has come to the conclusion that the hospital having to ring to change the appointment twice was at all avoidable?

I don't think anyone has a problem with a hospital accommodating medical emergencies, but what it does need to do is a) keep proper records of disabilities, as Whothefuckissimon says, as this will affect how patients need to be told about the change of plan, and b) be a lot more transparent about things like strict 5pm deadlines for elective surgery if that is how they decide to run their staffing schedules for surgical aftercare (for that is the real reason). If this was all explained and planned for properly, then I think there would be less distress. At the moment too many hospital see surgery on a level with taking your car in for a service and seem to have the sensitivity of a flying brick when it comes to respecting their patients holistically. And there needs to be much more awareness of issues like childcare and disability and so on in planning schedules. The psychological fallout of being messed about is always going to be a factor in any medical recovery and surely this needs taking into account?

It wont be the fault of the people you will see, ie it wont be the healthcare providers, but someone sitting in front of a computer, probably not even on the same site. Someone to whom its all just numbers and timeslots. I might be wrong. I dont think so.
Hope you manage to help your wife settle down. And best of luck for Friday

Our local hospital has a feedback page on their website. When I posted on it they responded quickly. Maybe yours has one too?

I realise this is upsetting, but if they've had to book a last minute emergency C section they cant help it.
Emergencies have to come first.

However we could easily have done what has happened to the OPs wife to someone with similar issues without realising. And this thread has certainly made me think about the proceedure at our hospital. Our section list is just a basic list of women's details, gestation, reason for section.

We wouldn't know anything extra such as if they were disabled, had had a previous stillbirth until the day of surgery when we get the notes (unless this was the reason for the section). I think we probably ought to start putting such details on our basic list to hopefully avoid such things.

THIS IS WONDERFUL!!!

The point of PALS and making a 'complaint' is it is not just about venting or criticising how something has been handled. Its not just about getting an apology.

Its about being constructive and improving things by working with services to point out problems that they might not otherwise have thought about or considered.

Changes could be made here that could really make a difference to someone and really don't cost anything at all. Its such a simple thing to do. There will be times where cancellations are going to be unavoidable, even for women like the OPs wife, but its about how that's handled that can make it more tolerable.

It about patients engaging with hospitals and working as a team essential.

It does not have to be a THEM AND US situation. More of a 'how can I contribute ?' thing.

It definitely made me feel better about what happened to me. It made it feel worthwhile in the grand scheme of things.

Awful, complain to PALS and take it further if they can't help. The hospital may be having difficulties but they also have a duty of care to your wife and if they know about her spectrum issues they really should have managed this far better. Even if you can't resolve this incident satisfactorily it may be useful to take it further to raise consciousness and so help avoid others being treated that way. Hope she, and you and the rest of the family, are OK, and wishing you a good experience on Friday X

Your wife needs your support. Putting her on speaker phone isnt the answer. A family member of mine works in the obstetrics team and believe me they only cancel if they have an emergency. An emergency is life or death and I've answered calls to my family member who have had to deliver stillborn babies via C section where the mother has also passed away. I'm not trying to be horrible but you've got a healthy wife and baby who are able to be moved a few days.... Put your self in the position of the person who is currently using your slot. It could be such an awful situation. I personally know which phone call I would rather receive. Calm your wife down, be strong and enjoy the next few days xx

I would call and ask for the the head of midwifery. They need to be aware of your wives condition to care for her properly and whilst changes happen they need to be made aware so that they can try to handle it sensitively. Good luck X

Oh vb2014, quit it with the emotional blackmail and trying to silence feedback.

Its not a competition about which is a worse situation and which phone call you'd rather have.

Just because something awful happened to someone else does not mean that you should effectively take on the burden of emotional responsibility for that to your own detriment. Nor does it mean that the additional needs of the OPs wife are irrelevant and shouldn't be flagged up.

Half the problems in maternity are down to the attitudes of women just accepting poor practises and protocol because of this guilt trip that, even though things did not go right there is someone else who nearly died and that's much worse and therefore I don't have a legitimate reason to voice my feelings.

We have to change that mentality and encourage positive criticism.

I've nothing useful to add apart from echoing those who have said how nice it is to have such a caring and understanding DH; I totally understand the red to vent, and TBH this is probably exactly the right place for that. I hope everything goes smoothly from here on, stay strong, and enjoy the arrival of your beautiful new family member!

YANBU. I hope it all works out for you. Please write a letter of complaint, one of the reasons maternity services don't improve is because people rarely complain when they are unhappy with the service they receive. They go home with their baby and think "oh well, it all worked out in the end". Even if it doesn't improve things for you this time, it might for the next patient. I hope it all works out and your caesarean birth goes well. I you want this sorted now you can phone the hospital and ask to speak to the supervisor of midwives and explain to her, they are generally very sympathetic and helpful. Xxx

Changes could be made here that could really make a difference to someone

What changes? Presumably the first change in appointment was necessary, and they would have wanted to give the patient as much notice as possible. How could they have known that another emergency would mean the appointment would need to be changed again? Should they have held back passing on the change of appointment until the last minute to avoid repeat changes, which could have caused awful problems for the patient with them receiving notice of the change only at the last minute?

OP, I recently have contacted PALS about a hospital issue. I made the mistake of posting about the situation in AIBU and got told I was U. It concerned an elderly relative with dementia and a miscommunication which impacted the relative badly. PALS have since contacted me and asked me if I wanted to escalate this to an official complaint.

I have a friend with autism so I understand the concept of meltdowns, although it is not something I have witnessed. I think that you should explain to the hospital the problems that have been caused by the rapid reschedules, and make it clear that you are well aware that the meltdown is an autistic 'response' to the situation. If I am reading correctly, your main aim is so that they (hospital) are aware of the potential upset/distress caused in such circumstances to someone who is not neurotypical.
The friend with autism has health issues and also struggles with rescheduled appointments (not to mention anxiety about the appointment before-hand). Recently she had to attend hospital three times in five days for appointments about different matters. All in the same hospital, all short appointments. One of the appointments was to do with her autism and that got rescheduled. By text. She was already stressed because it had been impossible to have all the appointments on one day which, although would have been exhausting, would have been easier to 'prepare for'.
I concur that many people just do not understand autism. The thing is, if nobody ever says anything, nothing changes.

You can call the hospital at any time day or night and ask to speak to the on-call Supervisor of Midwives whose responsibility it is to advocate for women and families in such circumstances.
Having sat on many maternity clinical team meetings in our local big hospital this sort of situation would be of great concern to the staff, who sometimes fall foul of red tape and staffing pressures. They can prob rearrange and reprioritise the theatre bookings.
I've not read every post so sorry if this has been suggested /tried. You can google 'supervisor of midwives' for more info. Best. Xx

RedToothBrush I wasn't emotionally blackmailing anyone? That's quite a statement to make! I was trying to show the other point of view.