Action on Postpartum Psychosis
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Experience of being in a MBU?

A question about mother and baby units: can anyone tell me about her experiences in one ? what helped and what if anything could have been better ? How many others were there at the same time ? Or were you and your baby alone ?Did you learn valuable information about your depression ? How did you fund your stay? How did you get a referral to the unit? Thanks for your help Denizt

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Hi.

I was in Bournemouth MBU when my son was 10 days old (only that age due to him being in and staying in hospital until he was 7 days old)

The MBU there is a lovely environment - it’s only joined to different wards by a door so it felt like a little cottage. The staff are amazing, they did activities like baby massage and messy play just adult activities like cooking. I thought it really helped my recovery, they have drug nurses so they can give you medicine as you need it. I was there for 2 weeks which was short compared to a lady who stayed 5 months (different conditions tho). You will find that it’s not just ladies with PP in the MBU, they treat all other baby related problems.

It was a 5 bed MBU, the numbers did go up to 5 in the 2 weeks I was there - they try to send you home to get u resettled but we were quite away from home.

My baby was in the nursery which was next door to my room, you are free to go in there and see your baby, it’s more about getting the sleep you need to recover so for the first couple of days I just slept day and night, then when ur getting better your baby is put in ur room with you.

I didn’t suffer depression- more thoughts and lack of sleep.

We had insurance with covered some of the cost of my husband staying for 2 weeks in Bournemouth and at the time he was signed off on sick leave due to my condition.

I called the hospital to say I thought I was in labour (after I had already had my son) and saw a duty doctor who gave me sleep tablets and then the midwife arrived the next morning and luckily she had heard of PP in her 15 years experience and thought that’s was it was. After a few days of the crisis team and waiting for Bournemouth to reopen I was admitted and taken by ambulance.

I hope that’s all your questions answered but if you want to know anything else then please message me :)

My little boy will be 4 in the next 2 weeks so there is light at the end of the tunnel xxx

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Hi Betty Thank you for sharing your experiences and it's lovely that you did so well with the help you received . It sounds like you had very good support and yes it's so true that excessive tiredness makes it so hard to cope , in the early stages . Best wishes and congratulations on getting through it all . Denise

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Hi Denizt

I was in the Bethlem Royal Hospital MBU in south London. It's the largest MBU I think, there was around 15 inpatients.

I was admitted there via a visit to A&E and the strong urging of the psychiatrist who saw me in crisis. My Psychosis then became a lot worse (before getting better) while inside. I received excellent, very intensive care: one to one nursing (24hrs a day) for around the first 4 or 5 weeks, and then gradually gaining more and more independence. I also benefitted from a very stepped approach to discharge: my first visit home was for a few hours, then an overnight, then a weekend, and finally a whole week.

My treatment was mainly drugs (clonazepam at first, and then increasing amounts of Olanzapine and later fluoxetine). I would have liked to have had some psychotherapy too, even a group session would have been better than nothing. However we did benefit very much from a couple of sessions with their amazing child development psychologist. In general a lot of the therapeutic work was around building up my confidence to parent and to coax me into doing all the things I was super anxious about. At first, when I was so psychotic, my baby was cared for 100% by the staff, so it took a long while for me to be confident in my own abilities.

I wrote a blog which might be of interest:

bumpsandgrind.blogspot.co.u...

Hope this helps! Kat x

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It is a brilliant blog Kat . What an experience , and how traumatic . . Having had pp psychosis I know how terrifying it is . Sounds like you had some excellent support in the unit . ..How was it after going home ? that can be lonely .

Regards Denise

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I also was at Bethlem Mother and Baby Unit. I did not have a good experience. In fact I have since written a letter of complaint- it was too raw to write until this year, and when I think about it to this day it makes me feel angry. It was in 2010. When I complained about it at the time, they said 'well we can send you back to Lewisham general psychiatric ward if you are not happy' (where i had been under section- ie a threat, to shut me up). I have every confidence that my impression was a valid one- as friends who visited me (and weren't in the grips of mental illness) were also unimpressed. (I also was already on olanzapine by then, and had no psychosis when I was in there, I was just very very anxious and low). I also met someone else in there who was also unhappy with her experience.

I have never written this on here as everyone seems to be have such a positive experience -which I am very happy about, so I didn't want to bring down the mood on here. But as you ask- I'm more than happy to share my experience. It is MOST DEFINITELY NOT reflective of the place as a whole- it was nice grounds, they did run massage classes etc etc. It was reflective of the staff at the time and afterward despite my very timid (at the time) complaints being ignored or being rebuffed, my psychiatrist afterward did admit that I was not there at a good time. The staff were mainly bank staff ie temps. There was not a supportive, warm atmosphere, we were just left to our own devices. And as my brain was too wired to concentrate on TV or magazines, I just spent hours and hours on my own, which made me much iller. I developed agoraphobia whilst I was in there. I hated hated being stuck in there, but when I went out into the real world, I developed panic attacks. I definitely became institutionalised-like in a prison. Again they said it was not possible for a stay of 3 months. I would completely disagree.

There were definitely some kind ones in there- to this day I will never ever forget one for her immense kindness.. However, one lady with psychosis, became very sick and was making no sense wondering up and down the corridors, the staff -behind her back but in view of us mothers- were really laughing at her and taking the mickey. I WILL NEVER FORGET THAT. My anger and hurt is not for myself it's for people with mental illness who are from poor deprived backgrounds and are treated in an inhumane way. Sorry I'm ranting now. But I find it horrific.

Anyway there were about 15 women I would guess. We started with the babies in a separate room, and as we got stronger, they were brought into our room.

As I said I can't fault the place per se, just some of the staff at the time. I got moved there from a general psychiatric unit in Lewisham, once a place came free. But was in Lewisham for 10 days first (that was the most scariest experience of my life) and I was separated for a week from my 10 day old baby and in a room with the tiniest of windows and with barrs on them. And in the most claustrophobic long corridor.

I am long healed, long better, but I nearly didn't have another child, not because of the past partum psychosis, but because i was so terrified to go through that ordeal again. And it was a horrible eye opener of how psychiatric care can let down (and traumatise) people with mental illness.

Anyway I'm not sure why you are asking this, but I think the government should pull their fingers out and invest more money into mental health provisions. My mum still had PTSD about some of the trauma of seeing me in Lewisham psychiatric hospital get sectioned.

Hope mothers reading this appreciate that things have probably improved alot as it was 7 years ago. And most mother and baby units provide a supportive and secure place.

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Joanna, Thank you so much for being brave enough to write this. I was also at the Bethlem and had a similar experience to you. Mostly bank staff who don't care. A scary place to be. I only recovered after I left there as it made me so much worse. It felt more like a prison than a hospital. I was a voluntary patient but they wouldn't let me out for three months. I had PTSD from my time there - only just recovering now 3 years later. If you got emotional or upset they surround you and threaten you with restraint so you learn to keep quiet. The solution is always more drugs! There were a couple of compassionate nurses but they were few and far between. Mostly no staff spoke to me for days. Sorry if this is not what you want to hear but that was my experience. Hope other MBUs are better. Thanks for being brave enough to share this Joanna. I thought it was just me!

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God I'm so sorry you went through that too.... No I'm glad you said... Not that you went through it... Bloody awful.. Big hug.. I wrote them a letter. Took months to hear back... Let's just pray it's better in there now for the next bunch of mums... It also made me so much worse.. People when they hear you went to hospital- think how lovely. They have no idea!!!!!!! Big big hug... XXXXXXX

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Thank you xx I'm glad you have found strength to recovery too. It did make me aware of how the psychiatric system can be very disempowering and how vulnerable people can get sucked in and get caught in downward spiral of trauma which could have easily been me without support of family and friends xxx

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Dear Joanna

Thank you for sharing this. I know how hard that must've been to write and relive. I also know from befriending other "survivors" that you are not alone. I always count myself lucky: I had two or three very dedicated nurses who seemed to be on duty most of the 12 weeks I was in there. Their care was incredible, and I felt listened to and very supported. I will never forget the small things, like nurse Sarah who helped me shower (while very disorientated and really non functioning) by standing just outside the stall and handing me soap and shampoo and conditioner at the requisite moments! Or the nursery nurse who took my son for his check ups when I was too scared to leave the ward.

But yes sadly there were one or two (this was late 2012/early 2013) who possibly shouldn't have been working with vulnerable patients. I overheard one horrible older nurse bitching about the expensive pram I had. I was so embarrassed about that pram!! And when I was better I became acutely aware of the many inpatients who had nothing, literally nothing: not even a family to visit them, let alone a place to be discharged to.

And don't get me started on parenting assessments. Most MBUs seem to not host the dreaded PAs, but sadly the Bethlem still does. That created a lot of tension and anxiety, even for the mum's (like me) who weren't being formally assessed.

All that said though, I am very grateful for my care and for my recovery.

I do think all voices need to be heard: not just the positive ones, but the voices of those who maybe feel excluded from all the back slapping and congratulatory events out there.

Hope you are well and again thanks for sharing, Kat x

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Hi Joann . Thanks for your comprehensive reply and sharing what was a very traumatic time for you and one which has also affected your mothers peace of mind . . So much does depend on the quality of staff which makes a world of difference . .that was appalling behaviour you described and I wondered if it was a reflection of staff shortages so inexperienced , and unsuitable Ines called in to fill the gaps ?

Years ago I had frightening pp psychosis and this was ignored . .it was lonely scary and compounded by high fevers and post Caesar infections . I had my first baby in NZ).. and PND with my second, but somehow managed to survive it , with huge difficulty . .my nursing training did help but I received very little support or understanding .

It's an indelible experience and I continue to observe the gaps in much needed support in this area , which is so very necessary . ..I'm a qualified nurse and mother of 4, ( and grandmother ) am interested in hearing of first hand experiences to see where things can be improved within communities to alleviate the problems new mothers struggle with but often go undiagnosed or brushed under the carpet

Best wishes for health and happiness

Denise

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Hi All

Thanks for sharing so honestly on this thread.

I was in a MBU (a private one, though NHS paid my place, and it has since closed). Though some of the practical provision wasn't ideal (looking back I think they could have had more activities, such as craft and art for example, and more opportunities to have our babies in the room overnight with us) but the staff were generally lovely, empathic and respectful and I felt well cared for. I too have many memories of the lovely support they gave me - supporting me in the bath when I was really unwell, and slowly building my confidence after the psychosis. I don't think I would have recovered as well, without being in the MBU.

It is therefore really sad and shocking to hear that some of you haven't had good experience in the MBU and that you received and witnessed such poor care and attitudes towards patients.

I did want to let everyone know that there are places you can go to, to raise concerns if you, or a family member, wanted to, though I can imagine it must feel hard to do that when you're feeling unwell and vulnerable.

First of all if it is an NHS unit then they should have a Patient Advisory Liason Service (PALS), as this page says they can "help resolve concerns or problems when you're using the NHS" nhs.uk/chq/pages/1082.aspx?... - this maybe is more for if you are having problems at the time.

There is also an organisation called Healthwatch which takes feedback about health and social care and then influences policy and change within services: healthwatch.co.uk/our-value...

There is also the Care Quality Commission which regulates all health and social care in the UK. If you witness any situation of abuse or neglect when you're in hospital, you can report it (anonymously) to them, and they should investigate it. The page is here: cqc.org.uk/what-we-do/how-w...

I do hope these links are helpful, if anyone does want to raise a concern.

Take care everyone X

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Thanks Ellie. I am not sure if my voice will be heard after so many years. It takes a lot of emotional energy to contact these bodies and it brings up a lot of upset, writing these letters and then you have to endure the frustration of no one replying or an inadequate reply. I actually fed my letter through to Bethlem, via your charity- APP, as I thought they would take it more seriously coming from your charity. They still took months and months to reply- with some of your representatives (kindly) chasing them up. Not good enough (Bethlem not APP).

KatG- yes those parenting assessments were beyond stressful. You had to wait all day for your slot and then be called into a room with about 20 individuals all determining your fate. It was so intimidating when you are so vulnerable and it's just you and then all these different people judging you. Even my husband out of the blue recently (7 years on) brought up how stressful they were.

I was soo lucky (not in their shocking care/disregard/quality of care I had) but in that I had family support and because I was from a middle class backgroup, I didn't have to endure the added stress of social workers determining if you kept your child. The pressure for them was insane. It would literally drive you mad, if you weren't mad already. I went in there okay, but felt suicidal until I came out.

LemonadeSparkler- yes it was like being in a prison. No one ever came to look at me when I was in the bathroom, so weak and vulnerable. No one ever sought me out in my room to ask how I was, or give me comfort. They decided when I arrived that I had to be there for 3 months - because that was the standard for PP- and those 3 months did so much damage. I literally took every drug on offer- tranquilizers, sleeping pills so I could be knocked out and by sedated from the stress.

Anyway I can't change what was done - and I did get counselling (which I had to pay for). As the psychologist at Bethlem forgot to send my referall letter for counselling after- so I waited for nearly a year and never got any (again shocking, given how high up on the list for counselling I should have been). I paid someone and it put me back together.

Perhaps APP (a wonderful supportive charity with amazing peer representatives on here) should not only focus on research and awareness of PP, they should do some lobbying of the govt to ensure there are more MBUs and that the quality is good. Doesn't feel fair it's down to the individual to ilicit a change. No one is going to listen to just one disenfranchised voice.

Just my suggestion, but perhaps one to consider as a charity pretty please??

Thanks.

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Hi JoannaBrooks & others posting and reading - thanks so much for sharing your experiences here. It's sad to hear about experiences that people feel were less than ideal and leave them feeling as you do. I know I was lucky to have great support in a MBU but this was only after a horrendous few weeks in a general ward - horrific mostly for my family as I am lucky to have very few memories from that time. Nobody should have a poor experience of care, particularly around what should be a really happy time, having a baby, and we are then unlucky enough to have a severe mental illness.

I wanted to let you, and others here, know what APP is doing to lobby government and raise more awareness, both around MBU experiences of care and also perinatal mental health support generally. APP brought together key organisations to form the Maternal Mental Health Alliance (http://maternalmentalhealthalliance.org/), which now has a membership of over 80 national organisations – and has been key in lobbying government, ensuring that addressing maternal mental healthcare services has become a national priority. APP also hosts the Everyone Business Campaign for the MMHA, which was instrumental in securing £365 million of additional funding to improve Perinatal Mental Health Services, including 4 new MBUs in England and a range of community provision. As part of NHS England's Five Year Forward Plan for Mental Health, this will make sure that women and families are supported by the most appropriate service in the best place for them.

The MMHA Campaign Director, an employee of APP, was last week invited to Buckingham Palace to discuss the future of Mental Health as part of World Mental Health Day 2017, hosted by the Duke & Duchess of Cambridge and Prince Harry, plus other eminent guests including Stephen Fry - all of whom had a close connection to mental health. Our Director, Dr Jess Heron, together with local volunteers, gave evidence to the recent Welsh Government’s Children, Young People and Education Committee Inquiry into Perinatal Mental Healthcare in Wales. The report has now been published and makes several recommendations for Wales - an area where there is currently no MBU provision. You can read more about both events here: app-network.org/news-events...

We send a newsletter regularly to everyone who would like to sign up to hear more about APP's activities, and have ways that people who have experience of PP can be involved in the charity - including helping stories be heard and informing future service development and staff training. For more information, please see the website or drop us an email at app@app-network.org. Our Facebook and Twitter accounts also have more about our activities.

I know all of us at APP, and all the wonderful members of this forum, are passionate about raising awareness of PP and how it can affect women and families, and making things better for the future. I hope this is helpful for you to hear. I also hope you will agree that great strides have been made in recent years but there is still work to be done; we won't stop until PP and Perinatal Mental Health has the profile, services and support needed for all women and families.

Take care, xx

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Dear all,

thank you for your honesty and exchanging your experiences. I have kept my lid close for five years. I was in a mixed psychiatric gender hospital.

I am still struggling today despite my recovery from PPP. Traumatising experiences can affect our mental health long term. I certainly have the utter most compassion, for all those mums, whose experiences were "unfair and/or unreasonable" such as negligence and abuse during their MBU/hospital stay and path of recovery.

I believe in hope! There are many mums and family members who have been affected by PPP and other peri natal mental health issues (not only one year after), - yet, because of their experiences, they have found the strengths to create a voice for people, who can not speak up/out. They are in the public eye, trying to raise awareness, learning and teaching and changing attitudes towards mental health, which has been on many occasions swept under the carpet...

New MBU's are being developed with the help of volunteers.

x

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Hi Joanna, I was very moved and saddened to hear what a hard time you had , and it took a lot of courage to revisit it again.. It really was a nightmarish experience for you

I feel optimistic though that lessons can be learned and changes made for the better, if your voices are heard. The minister for Health should have all the information to bring about essential changes in this field.. you were neglected and treated appallingly. I hope that if we can bring about improvements for mothers it will be at least some comfort..Trauma is so embedded even years and years later as we know..

Sending you Best wishes .. hope you have a good day today ..Denise

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Yes thanks all. I am very glad to hear re the strides APP are making. Encouraging stuff. I really am fine now (it's just -with regards to this topic- old wounds resurface, I guess these emotions never 100% go away). But my anger is really directed at the mental health provision for those less fortunate than myself, who don't have the support- practical/emotional and financial- and who deserve better. Anyway I hope and pray that things continue to improve and mental health (especially for new mums) is given the priority (and funding/and quality care) that is warranted. Thanks again. I am very grateful to APP. You helped for sure put be back together. All the best to all of you.

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Hi Denizt

I had PP with my first child end of dec 2013 beginning 2014. My sons birthday is coming round he will be 4 and although 4 years have passed. The whole experience still feels very rawr and i remember so much detail of my stays in all hospital to MBU.

I was first put in a local acute mixed ward. But staff soon realised i was far too unwel to stay there being a risk to myself and others. I was then sectioned in cygnet hospital in becton miles away from family. My stay at this phychiatric hospital is still traumatic to think about when i remember my out of control and out of character behaviour. I remember every family visit i had and how i was acting. I remember being kept in my room for what felt like days and i was so scared, i honestly believed i was kidnapped and being abused and all i could see was these different men sitting in my door way. I know doing their job. One time i tried to push past a staff member screaming to let me out ad i had enough he grabbed my arm and pushed me up the floor i started crying. Another time i was again trying to get out my room and this huge built woman pushed me back on my bed and eith another staff member restrained me using the bed sheet. I know this is what happened rven though i did have a manic episode i still believe it to be true. Sorry for the detailed vision. I understand this is what they might had to do but the man pushing me up the floor is disgraceful. My mum complained of brusing over my arm when she visited me, she kicked off so there must be some truth to what i remember. Other than them two times i do understand i was out of control. But other than that the rest of the staff were so lovely and caring i even remember wanting to hold the elderly ladys hand that worked there i always felt safe with her. The activites snd resources side were brilliant. My mum and doctor have even said how surprised they are of what i actually do remember. There was arts and crafts, makeup and nail varnish that we could use, karaoke, the occupational therapist done this session to relax she gave us these fluffy blankets and bean bags - put on relaxing music and lights off with luminated lighting. There was this room that was always open- you could seitch the lights off and the whole wall hal tiny lights in that looked like stars were everywhere. Lots of seating and bean bags and music playing. The ward had 2 showers and bathroom. A prayer room. Garden with gym equipment and benches. Food was 10 times better than MBU. This was a private hospital but funded. Overall brilliant resources and other than 2 mentioned before brillaint caring staff with alot of patience. Always sung allong with me when i randomly started singing.

I was here for weeks and then finally referred to the Bethlem Hospital Mother and baby unit. It was NHS funded. I was there february to april. I recieved good care from staff. I was very fortunate to have regular family visits and support. My heart ached for other women who had no one and nothing. I made friends whilst staying here. I felt helpless as one girl had social services on her back as she had no family how unfair. Another girl turned out to live right near me who i regularly saw on a bus or in the high street after being discharged and today she no longer has her daughter again she has no family support and she was doing so well in the MBU its so sad.

I remember taking part in the activities i.e cooking which i enjoyed but i was very tired all the time and struggled. I would be in bed by 8 and get annoyed being woken up for meds at 10pm. I always needed to go lie down during the day.

There were a few occasions these two patients would argued with each other. Another patient was always kicking off and bring rude to staff. She woke me up one night and i came out my room and said my piece which i wouldnt of normally if i wernt unwell.

Sorry to hear all these bad experiences others have had to deal with. I completely agree that it does affect you long term. I wish i could of helped all those women who literally had the clothes on their back.

Nearly 4 years on ive remained well so far with a second child. Thanks everyone for sharing.

Take care violet x

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Dear Violet, What clear memories you have of that whole experience. It seems reading what you said that there were times that everything seemed terrifying but also you recall the good aspects of your recovery.. There is no doubt that trauma

stays with us for years and years, and when revisiting it the physical effects can return and return until we are able to eventually come to terms with it.

My own experience is as indelible as when it was happening.. I was young at the time, looking forward so much to having my first baby and having done part of my general nurse training in the maternity unit this gave me confidence about handling and looking after my baby .I was totally unprepared for what happened.

Sudden premature (3 weeks) intense labour, very high fever (105) no pain relief /baby's heart getting weaker , being rushed down the corridor to theatre feeling weak and ill,a huge rough theatre nurse jammed the mask on my face and I thought she was killing me. When I woke up (and was told by the Obstetrician that in another 20 minutes both the baby and I would have lost our lives) my baby was in another ward so I didn't see him .until 2 days later until I begged to be taken to the nursery .. he was very red but a beautiful boy. I was very feverish and having crazy dreams and thoughts, unable to sleep with worry . Once baby was brought into my room ( on the 4th floor) I was obsessed with the scary thought I could not control myself and would throw him out of the window.. I had cold sweats of fear and had to hold on to the bed to stop myself from doing something terrible it was horrific. and I was very frightened ..I told all the nurses to leave the door open, to check frequently and leave the bassinet by the doorway so he could be seen to protect him from myself. Nobody really listened or took any notice or realised how very ill I was. Partly I knew I needed help urgently and called for the matron of the hospital .. She was kind but said I was a sensible intelligent woman and she wasn't worried that I would hurt my baby, but did move me to the ground floor so must have had an inking how dangerous it was.

After 2 weeks I was discharged home feeling very ill, with high fevers , my caesar wound needing draining daily ,and I was at home alone (an absent husband who was away on business.) For 3 /4 weeks I struggled on with high fevers, pain and hallucinations, and gradually I don't know how, I came out of the fog and with my lovely dog for company (who had 9 puppies at the same time ) I recovered.. It was desperately lonely and very scary to feel I was losing control of my equilibrium but after a few weeks once the fevers subsided I regained my strength,and got on with looking after my little boy who was such a joy to me.

Id like to hear more stories from women who have ideas of how the services could be improved... my best wises to all Denise

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