Hospital notes

[bluestarlady]

Hi, has anyone had any experience of reading their hospital notes from being inside a psyc or Mother and Baby unit?

I sent away a request form for my notes because there were a lot of things that happened (or may have not happened !) that I still can't reconcile in my mind. I have been sectioned in the same awful psychiatric ward twice (once with PPP after the birth of my son, and once with psychosis brought on by lack of sleep 2 years later when I was under a lot of stress at work) and both times were very traumatic as I'm sure lots of people here can relate to. I have particular clear memories of being outside in the garden at night for hours trying to escape and being dragged back in, and would really like to see the staff's interpretation of this.

My hospital notes arrived several weeks ago and I haven't opened the envelope yet. I'm not sure why but the timing has not seemed right.

Does anyone have any advice in relation to this?

Thanks in advance.

X

[violetx]

Hi bluestarlady

I was sectioned iwith pastpartum phychosis december 13 after having my son.

I was put into an intense phychiactric unit in the Cygnet becton.

I too can remember alot of my traumatic experience in hospital. My mum was told i wouldnt remember but that is wrong. I can remember my behaviour, what i was saying and thinking. Even the detail of my room and the faces of the staff (all of their names). It is awful what we go through, its so rare and not many people have a clue what it is. Even my closest friends havent got a clue what happened to me.

I did see a phycologist once a week to talk about things, i often expressed to her what i could remember. She then suggested id write down my whole experience from the beggining almost like a story, my story. Which really helped me! I have to tell you looking back it wasnt all bad memories being in their, i do remember a room with cushions and sofas with lights on the wall and the room played music which i was often in with other patients. And i also remember as i got better i got involved in activities. The staff were excellent.

I then was transferred into a mother and baby unit. I was still very confused where i was and why i was there. I could see that the other women all had different illnesses and some still fairly unwell. I seemed to recover very quickly. I made some great friendships and often catch up with a couple of girls. None of which had the experience i did.

I got my care co ordinator to print off all my information about me for housing needs. And looking through them shocked me as it had some details of what i was saying and thinking which i remember! Maybe write down your experience it may help you have it all out. It might give you some closure.

I hope this helped. Wishing you good health x

[bluestarlady in reply to violetx]

Thanks violetx - I like the idea of writing things down as I've not done that. I learnt quickly not to say what was going on in my mind (especially the second time around) so I think I came across better than I was. At one point the patients thought I was staff and even the psychiatrist questioned why I was there! As a result I've not shared a lot of the beliefs and thoughts I had even with my partner. I think the idea of writing down my story BEFORE I open my notes might be useful.

Take care. S

[Jenny_at_APP Partner in reply to bluestarlady]

Hi bluestarlady,

I also find writing things down a real help (and also lived a lot of my psychosis in my head). It's still a work in progress, I don't think I've looked at it for the best part of a year but do intend to carry on at some point (and it soon comes flooding back when I go back to it).

In terms of looking at your notes, I just wouldn't rush it, just wait until you feel ready And remember when you do, that you can always stop and put it away again. I know I'd be hesitant too, I've always been interested to know what was written about me and how I came across as they had no idea what was going on in my head, but there's that fear of the unknown too. Just take it in your own time.

Take care x

[bravesurvivor411]

I haven't seen my behavior notes (but have seen my med notes) from last year but I am interested in seeing them I remember 98% of my hospital stay I actually had two stays but the beginning of the first one was extremely traumatic. I was trying to escape for several days. I was held down, drug down a hallway and put in solitary confinement. Very triggering for a rape survivor like myself. I asked my psych doctor about the drugs administered. I refused to take any drugs the first couple days because of course I thought they were trying to kill me. During family visit time my husband convinced me to start taking the pills. But in the hospital notes it said I was administered 5 different antipsychotics. I was only in the hospital 10 days I don't remember a bunch of different drugs and I find it odd they would try so many. I want to clarify when I see my doc soon.

I think it's great you got your notes it might be scary at first to read them...maybe have a friend or family member with you... but I believe having more information can help.

[bluestarlady in reply to bravesurvivor411]

So sorry to hear you also had a difficult time. I too have memories of being dragged down the hallway and being pinned down and injected (and then the staff just walking away chatting). Not particular caring in my opinion.

Well done for getting through this - you sound a very strong lady particularly as it triggered difficult memories for you.

5 anti-psychotics seems like a lot - I've always been told they take time to build up in your body to work. It will be interesting to hear what they say about that.

I tried various methods of escape which looking back could be seen as quite amusing. Because my grandfather was in the Great Escape and tunnelled out of the POW camp I convinced myself it was my destiny to do the same and started trying to

dig a hole under the fence in the garden with a metal spoon smuggled from the dining room. The second time around I spent hours in the garden at night in the cold trying to work out the combination on the lock on the gate with the intention of walking the 10 miles home. I have incredibly clear memories of these events but it will be interesting to see the hospital staff's interpretation of these events (I've never told my partner about these things).

I spoke to a hospital psychologist today who was running a NHS mindfulness group I have been attending. She warned me that the notes may be full of jargon and not particularly clear as the people writing them never think that they might be read by the patient!

Thanks for your advice - very useful. Take care. x

[Lilly53 Volunteer]

Hi Bluestarlady.I had nothing directly relevant to add as I wasnt sectioned with my PP. But glad other people have been able to share their experiences here. I was very interested and noticed you said that your second PP occured following work stress. I wondered does this mean that someone with PP can be vulnerable to psychosis in the future without necessarily being pregnant or giving birth again? I guess if so it's an important reminder to us all to make sure we look after ourselves post PP. I had it twice but the first time was BEFORE my first son was even born and I think work stress(which led to intense sleep deprivation) was a key factor then when I look back. X

[Jenny_at_APP Partner in reply to Lilly53]

Hi Lilly53,

Yes, PP does increase your chances of suffering a psychotic episode unrelated to childbirth in the future (I don't know by how much). When we were finding out about the risks and options for planning a second child, we saw Prof Ian Jones and he made sure we were aware of this, so that we didn't decide not to try for another baby purely because of the risk of being struck by PP again (as we could decide not to have another baby for this reason and then really regret it if I had another episode of psychosis anyway and hadn't known it was a possibility).

I agree it is very important that we look after ourselves.

Best wishes x

[Lilly53 Volunteer]

Thanks JB55 for your reply. That's really useful to know for the future as no-one has really told me that as far as I remember (I only thought the menopause might be a risk period given related hormones perhaps) x

[bluestarlady]

Hi Lilly53,

I had no idea that it was possible to have psychosis again after PPP if you don't have a diagnosis of bipolar or schitzofrenia or have another baby. In my case my psychiatrist said, in her own words, that I might be very "unlucky" and it could have been an "unfortunate co-incidence". Nevertheless, I will now need to manage my stress levels, sleep and mental health carefully for the rest of my life. I should add that for me personally it was after chronic work stress for about 6 months and lack of sleep again (which is enough to cause psychosis for anyone apparently). Some people perhaps like us are more suceptible than others but I don't think there is much research available to understand why.

I think that taking care of (and monitoring) your mental health, stress levels and sleep is good advice for everyone regardless of whether you've had PPP or not - I've just had to learn this the hard way!

X

[Lilybeth Volunteer]

Hello bluestarlady

I was sectioned twice following PP when I was 23 and 29, many years ago now. Due to the stigma in those days my 'illnesses' were never allowed to be spoken of and remained a family secret. I wasn't aware I had suffered PP until by chance I met the then Dr Jones and some of the APP research team a few years ago.

I can recall some of the trauma of those PP days but some parts were hazy so I decided to ask my GP for my notes relating to the period after my sons were born when I was hospitalised, sectioned, etc. A few weeks later my GP 'counselled' me about my reasons for wanting to read my notes. He told me he had read them and described the content as harrowing. He also said he could prevent me from having copies if he felt it wasn't in my best interests. However, after a brief discussion I assured him that my purpose of having my notes was to gain insight into what had happened to me.

My sons are now adults. They have been very supportive and caring following my disclosure to them some years ago that I suffered PP after they were born. I told them I had applied for my medical notes and they offered to read them with me. However, at the time I received my notes we were all going through a stressful time and I decided not to distress them any further.

So ...... I came home with the notes ..... at first I just left them on the table and wondered whether I should read them. I finally decided I needed to know and sat on the floor very surprised and sometimes shocked at what I read.

I think I have said before that PP takes over and it's like being another person. How true that was for me ...... I can honestly say I didn't recognise myself ....... I was loud, argumentative, rambling, delusional, totally different in character. I was very surprised how many ECT treatments I had over the two episodes. I also didn't realise that after my second son was born I had an enduring depression which lasted for approximately ten months.

I would agree that you shouldn't rush to read your notes, just when you feel ready. It might also be an idea to have company when you open the 'box' to what was a traumatic time in your life.

I can only say how sad I felt when I read of this young woman, recently married and looking forward to her children being born, only to be separated from them and suffering in silence for so long because of being ashamed of her family secret ..... until I had the good fortune to discover APP.

Take care and take time .......

[DEb12W]

I too have wondered about accessing my medical notes. Two kids, two PPP, 4 public secure psych wards, 1 MBU. My husband has always been against it because of how terrible it was. But it's hard to explain what you do and don't remember of the experiences.

I don't think I could read through the notes myself, but instead have thought about getting my psychologist to arrange it, and then for us to digest them together. I don't necessarily need to read them as they were written for a different purpose, but just to have someone else interpret them and put together the pieces for me.

I'm particularly interested in the 4 day process, when my son was 6 weeks old, that despite our best plans, specified intentions etc I still didn't get to stay at the MBU but instead was sectioned.

Such confusing memories....