Pre-admission to MBU let downs

[Annanoosh]

I had a bad experience in my lead up to admission to MBU, I wondered if any of you can relate? I have previously written on here about my birth experience and how that was quite traumatic and I know some of you shared that experience also.

I'll try keep it short, but to summarize I was discharged from hospital the day after I gave birth and I had a strange, worried feeling. It felt like a nagging fear that followed me constantly. After a week or so, I started to have severe panic attacks, stopped sleeping, couldn't bear to be left alone. I had to write lists of how people needed to treat me because I couldn't cope with anything practical or anything unexpected. I was constantly crying. I saw a health visitor, I cried and told her how I felt, she said it sounded like baby blues. I went to A and E (after a whole night of no sleep), I was delirious, saying I was worried my baby was going to be taken away, and talking about suicide, I told the doctor and was sent home with 2 diazepam and a letter to my GP was forwarded. I don't know if she got it but she didn't follow it up. I went to my GP surgery 3 times (I was prescribed sertraline) , saw different GP's and each time cried inconsolably, confessed to suicidal thoughts, when one GP asked if I was planning to hurt my baby I remember feeling sickened and then became paranoid I would. I saw a psychiatrist around this time, I was referred by one of the GP's, again I cried said I was suicidal, I was sent away and given an emergency number in case I became paranoid. I went walking around this time alone, I remember standing by the river and wishing I had the nerve to jump in, I wandered around the park crying and wishing someone would ask me what was wrong.

I quickly went down hill over the space of days and became paranoid, completely lost my memory. Then I started collapsing, I would black out, find myself on the floor and was convinced I had locked in syndrome. My family wouldn't phone for an ambulance. To be honest I am having a very hard time understanding this. At one point I managed to get my phone, I phoned an ambulance and they came to find me on the floor unable to move. They managed to get me to the sofa after checking my vitals and left, in the notes they left it said "has a history of anxiety", which I do but it is mild. I cannot for the life of me understand why upon finding a 36 year old woman with 2 children on the floor saying she cannot move, a woman who was a teacher, a professional, no previous history of severe mental health problems they left with no follow up. I can only think that it was because it was obvious it was a mental health issue and they are desensitized to being called out to mental health related issues and therefore don't take them seriously.

That night I was again paralyzed on the sofa, my dad rang the NHS mental health emergency number and he was told to give me diazepam and get me in bed. I couldn't move, I was convinced I was locked in, only able to move my eyes. I felt like I was in a living nightmare, I mean that literally, I WAS in a living nightmare. At some point I dragged myself up the stairs by my arms and let my dad give me the diazepam. My dad seemed annoyed with me, like I was attention seeking or "putting it on", there was a sense of "come on girl, pull yourself together", my partner was in bed in the attic with the baby whilst this was happening. He was completely unable to cope and had decided to take himself away and ignore what was happening. This is his coping mechanism.

To be fair to my family, the health professionals, all of them I had seen had not been able to tell them what was wrong with me. I think they felt I had extreme anxiety. I also think they were worried I would be put in a Psych hospital away from my baby. We didn't know anything about MBU's.

It has been a year since these events, the day after this I went to the GP's and collapsed in the reception, I was taken by ambulance to the psychiatric hospital then transferred to the MBU. No-one came with me in the ambulance to the MBU I don't know why, my partner was at work and my Dad didn't come. I don't know why. I was left in a room in the MBU for a couple of hours and then sectioned because I said I would jump out the window if my baby wasn't brought to me immediately. I had no idea where I was, what was going on, if I would see my baby again. In the end he was brought to me, I was sedated, told my diagnosis and then spent about 3/4 weeks in a psychotic state. I was given Olanzepine but it was the ECT that brought me back. The MBU was very good, I have no complaints at all.

Today I cried properly for the first time in a year. I cried because I feel like everyone let me down. My family, the doctors. I saved myself. I am angry with my family, but I don't feel like I can get angry with them because they didn't understand. I feel like I can't forgive them and I feel like it is holding back my recovery. I feel like I need answers from health professionals. I feel like I need someone to listen.

[Jenny_at_APP Partner]

Hi Annanoosh

I’m sorry you went through that, I hope having a good cry about it helped a bit - I think it’s very much part of recovery and coming to terms with what happened. It’s not fair, it’s ok to feel let down and angry, and hopefully once you’ve processed everything that happened (and didn’t happen) you’ll be able to move past it and move forward.

Have you had any counselling at all, or do you have anyone you trust that you can talk to about all of this? I think this forum is very good for sharing experiences and feelings that can be very difficult to understand if you’ve not ‘been there’. There’s unfortunately still a lot of fear and stigma around mental illness isn’t there, as you say your family probably just didn’t understand and didn’t know what to do or how to react. It’s so good that you were aware you needed help and were able to eventually get the support you needed.

Could you talk to your family about how you feel do you think? Or perhaps share with them what you’ve written at some point? I’m sure others here will have had very similar experiences and will have some good advice - my advice is share your feelings in whatever way you feel comfortable with - talk, write, cry, get it out, it’s a lot to hold onto and you will make peace with it in time.

Sending you a big hug xx

[Ellie_at_APP Partner]

Dear Annanoosh

Thanks so much for sharing your story. It was very sad to read, particularly how long it took you to get the help you need, and not for want of trying at all. It is really shocking and upsetting to hear it, and it makes me angry, on your behalf... I too had the awful delusion that I had locked in syndrome too, weirdly. It was so horrible and scary.

I don't know what to say other than you are such an amazingly brave woman, and that you have every right to be angry and upset and traumatised by what happened. I wonder too if you have been able to access counselling? It sounds like you have so much to process, particularly feeling let down by your family, who sound like they didn't cope at all when you were in crisis. That must be so hard, and I'm not surprised your struggling to process and move on and forgive. This is where counselling / therapy may help you?

I wonder too if you have ever given feedback to your local health trust about how long it took you to get support. I wouldn't do this if you don't feel in the right space to do it, but if you do feel able to do it, perhaps it may help you to get some closure - to feel that you have had your story heard (hopefully) and that even professionals may even take some learning from it, and change practices, or implement training for their staff in postpartum psychosis. There's a couple of ways you can give feedback. Firstly, through the Patient Advisory Liaison Service: nhs.uk/chq/pages/1082.aspx?...

Or through Healthwatch: healthwatch.co.uk/home

No pressure at all though, I just thought it may be something you would want to consider.

It sounds like you've done so well to recover. I've found the emotional recovery is what takes longer, but my experience was things do become easier, and memories become less painful as time passes. I think it's so important to express things though, that you want to express, and let out all your emotions. I found talking over my story so helpful in helping me process what happened. I'm thinking of you Annanooshka, we are here for you.

Ellie X

[Theo116]

Dear Annanoosh

I am so sorry to read your post, I could have written very similar about my experience. You have had some great advice already. I also thought I had locked in syndrome I could not communicate at all. I was ill for nearly ten days, three at home the crisis team were terrible just left diazepam and left me at home to get worse. I think there is a massive lack of knowledge about this illness something I had never heard of. I also had anxiety previously so everyone just thought I was anxious, How wrong could they have been. I try and think my family and husband did what they could for me and try and concentrate on the now. it does get easier I am 21 months along now and I just think we are survivors of this terrible illness. I wish you all the best mx

[Annanoosh]

Thanks all, it makes a big difference knowing I’m not alone. Somehow even though it’s awful it’s reassuring to hear some of you had the same symptoms. It’s an illness and nothing I did wrong, I need to keep that in my mind.

[Annanoosh]

Hi all,

I have decided I am going to share my story with my local health board. I don’t want other women in Edinburgh going through what I went through. I know it has been brought up in the Scottish parliament by the Lib Dem mp Willie rennie that the provision for perinatal mental health in Scotland is very bad. There are 2 MBUs one in Edinburgh one in Glasgow and only one perinatal mental health team for the whole country. I know this is better than wales and Northern Ireland! Doesn’t make it right though.

[Hazello Volunteer]

Hi Annanoosh,

Reading your account brought back memories of feeling terrified and so alone when I was starting to develop PP. I had insomnia and was getting delirious when in hospital but felt like nobody understood.

I wonder if part of the problem for me is feeling like things weren't right and nobody was trying to fix it. I don't know if this is the case for you but I think perhaps there was potential for the feelings to pass and just be a "blip" and I think a lot of professionals were waiting to see how things pan out. To be fair they didn't have to wait long as I developed PP 5 days after my wee one was born.

However watch and wait response doesn't reassure at all when you're feeling the most terrified and isolated you have in your entire life. The MBU are experienced at dealing with people who are in crisis and they are skilled at providing a safe environment for women in distress but most others rarely see people in psychosis and are therefore unsure about how to deal with it.

I suppose part of it may also be communication breakdown, which is so frequently cited as the difficulty when things go wrong with services. I think in the perinatal period though you would hope/ expect professionals to really be on the ball about communicating as it's such a crucial time for mothers and babies.

I've often thought about making contact with local services to give feedback but never felt quite robust enough yet to follow through. It's really good to see you're going to. Especially as we were at the same MBU! Though I'm based in Perth so different health board when I was getting ill.

I find it helpful to know other women have had similar experiences and to know that APP are working to raise awareness and improve research etc.

Hazello