Did you feel that your care team had ... - Action on Postpar...

Action on Postpartum Psychosis

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Did you feel that your care team had sufficient specialist knowledge of PP?

jess_at_app profile imagejess_at_appPartner66 Voters

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My consultant was experienced with mood disorders & psychosis but not specifically PP. He was really great but after the first few months, I didn't see him that often & I really wished he knew more about PP from women he'd treated & not textbooks. The rest of my care team had no experience of PP at all - so distressing when they were supposed to be looking after me! At such a confusing time when all I needed was answers, I felt it was hopeless & that I was the one teaching them!

My Consultant knew about PP but not very much and the rest of the care team knew nothing at all about it apart from the Midwife who thankfully picked up what it was initially. It was terrifying when I didn`t know what was happening to me and needed to know. Also I was put in an environment where someone was doing cartwheels and someone threw themselves on the floor. I was unable to have my six day old baby with me and I was totally confused and frightened. Very little was known about PP and any information we got was when my family contacted a helpline for post natal illness. i talked to a group of medical students when I was a patient when I was a lot better and they said they had learned more from me than they ever could from a text book. That`s why i feel so strongly about spreading the word to hopefully raise awareness and improve things.

My care team were excellent once I came home from hospital, but they did not have specific knowledge or training about postpartum psychosis. However they would always try to find out the answers if they didn't know them - while I was ill with the subsequent severe depression I hardly asked anything at all (a sure sign I wasn't myself!). Becasue my care-worker was a mother, she took a specialist interest in PP and is since finding out all she can. I felt she understood that my psychosis was different to others that they normally treat as it is entirely linked to having given birth. When we spoke of the danger of relapse she always put it in that context.

My care during the psychotic stage was on an acute psychiatric assesment ward for 3 weeks separated from my newborn baby. I allowed my son to visit only twice because I was so afraid for him in that environment. The staff there weren't educated about PP and couldn't answer most of the questions my family asked, we were in the dark - I was treated as though I had a normal psychosis and the fact I had a newborn baby was irrelevant. The hospital didn't even begin to think about a specialist Mother and Baby Unit until my son was 1 month old and I'd been on the acute ward for 3 weeks. So much more could have been done by the staff to help protect the bond with my son and to help me see him everyday (something I feel is really important for PP recovery). Not seeing my son for such a long time was definitely detrimental at that time. I'm currently using my expereince to give constructive feedback to the wards in order to help them with future mothers that come into their care - the reception has been very positive so far.

The initial psychiatrist I saw diagnosed me within 2 days of being admitted to hospital which is why I ticked the "some knowlege" option. It wasn't until I was considering a second pregnancy and then became pregnant again that I met Doctors with specialist knowledge who had a weath of experience. I'm grateful for specialist support at that anxious time - I can't imagine how much more difficult it would be to have another child without professionals who understand the risks involved or who know how best to go about preventing* a subsequent episode.

* Note that preventive measures can not guarantee that PP won't occur again but there is evidence that they do work (I was well after my second). Sadly as yet there is nothing that can take the risk away entirely.

The crisis team who initially saw me ay my mother & father in-laws home were lacking in knowledge & experience of pp as we're the staff in the general psychiatric hospital I was initially admitted to & I was in hospital for 2 weeks before anyone told me I had pp. During that 1st 2 weeks they made arrangements for me to see my baby daily (apart from my 1st 4 days in hospital when I didn't see anyone) but other than that was treated just like anyone else with psychosis or an anxiety disorder. After 2 weeks I was moved to a mother & baby unit, the staff here we're much more experienced & understing of pp which was a comfort not only to me but to my family. The best bit about the m&b unit was being with other mums with pp, I relied on them a lot for support & reassurance & was able to help & support them too which made me feel a bit more like my usual self.

CatherineT profile image
CatherineT in reply to kellbell

I really wish I had met someone with PP in hospital. I felt like I was a misfit in the MBU I stayed in. I guess that sounds a little weird. I'm excited to be in contact with people who've had a similar experience. The only person I talk to about my illness is my CPN -who is utterly fantastic.

kellbell profile image
kellbell in reply to CatherineT

Well u've got plenty more of us to talk to now which I hope helps. The support I had from the other mums was fantastic & am pleased to say we remain friends. A couple of us even went back to visit the mbu on Tuesday, it was weird st 1st but i'm glad we went. There's not many people I haven't talked to.about my illness but i'm just one of those people that's hard to shut up!!!

andrea_at_app profile image

Thank for the great comments everyone, there're lots of really interesting points there! They all make it very clear how vital specialist PP knowledge & treatment really is!

My caregivers never told me I had post-partum psychosis. It was in my medical records and due to my own dilligence I found out years later,but only after another episode,and two stays in prison

Hadnt seen a case like mine for 20years, hard to get help, I thought everyone else was ill, I was fine as far as I was concerned, but when I was diagnosed with pp I felt I recieved the right help, I think looking back it was a confusing time for everyone, when I had my second child, things started again and knew what was happening this time around, I phoned my doctor straight away, my doctor organised for me to be into hospital, that night my pp really progressed, so i knew i had made the right decision, but I got the help I needed, before I decided to have a second child I was told I could have pp again, 50 percent chance, and really do think if I had another it would happen yet again.

The main consultant at the MBU was knowledgeable however there was a vwey hifh percentage of professionals involves in my care that were not knowledgeable about PP and often asked me to explain it to them!

The NHS Perinatal team were experienced but they only cared for me for a year, the GP who I was discharged to didn't contact me and I had to fight to get Community mental health support when I deteriorated 2 years later, following stigma and incompetence at my workplace (care). They left me feeling worse and so I had to go private for specialist support as Perinatal couldn't take me back due to me being over the year mark, post birth. 😞