Awareness of postpartum psychosis in antenatal classes?

[guinea1]

Can anyone tell me if when they attended antenatal classes, if they were taught anything about the symptoms of postpartum psychosis?

[Ellie_at_APP Partner]

Hi guinea1

Thanks for your post. This is a good and important question. From different experiences I’ve heard, most people don’t seem to hear about pp in antenatal classes, including myself (I had pp 8 years ago, and awareness has got so much better since then, APP were only just starting as the charity we are now). We have been trying to raise awareness and request that pp is covered, especially information about ‘early symptoms’. I think for so many of us pp was a shock, and we had never heard of it.

I know that NCT do cover it with all their trainers (this is something we worked on with them as a charity) but I think NCT trainers are all self employed and those that trained to be an NCT trainer before our involvement, may not cover it still.

It’s something our lived experience speakers mention in our talks we give, I know I do. In our slides at the end with our take home messages we say that all new parents should know the basics about pp. I was reassured recently by a parental educator where I live who does the NHS antenatal classes here, do cover it, and they talk about early symptoms.

Hopefully with all the increased awareness, media coverage etc, more and more people will hear about pp .

Do say more if you’d like, and I hope this answers some of your question,

Ellie

[guinea1 in reply to Ellie_at_APP]

Thank you for your quick reply, yes sadly the answer I expected.... I was reading about post natal depression in new fathers, that little is talked about and got me thinking if antenatal class talked about PP, I really think all should be mentioned not just the baby blues.. maybe a pack could be made up mental wellbeing could be made up. Definitely I feel needs to be addressed... i was saddened to see that a baby had been abandoned the other day and the daughter who's father had found the child had posted on Facebook.. about it and said she couldn't understand what could have been going though the mothers mind .. i answered to ask for some compassion for the new mum and that she was unwell and mention PP that can come out of the blue ... I hate it when people turn on mothers and so little understanding.. I am not sure what I can do yet to change antenatal talks . I know I wouldn't be strong enough to talk to expectant parents and my story isn't a good one, being the bad care I received but something really needs to be done and I think really good for my recovery therapy. Maybe I will ask my gp at my next appointments

[Pikorua Volunteer in reply to guinea1]

Hello guinea1,

it is the little things which helps to make a difference in the long run. Lived experience indicates sensitivity and huge compassion and it shines through in your words above.

Understanding concept of a viewpoint and trying to be none-judgmental, listening and raising awareness is something I do. I may dislike, but do not hate. I may dislike the behaviour of the person, but not the person in general.

You will be able to make a difference, - one always has to be kind to oneself first. (Buddhist philosophy) One can only give in moderation or until recovered.

Take it steady, learning and changes are imminent and you just know deep down when you can give.

Look after yourself.

x

[guinea1 in reply to Pikorua]

Trouble is why there are mothers hurting or seperated from their babies and end up in general psychiatric hospitals , it eats me up.. after 25yrs it still hurts so much, from the bad care I received, locking it away for so long...unable to talk about it to anyone until it broke me apart ending up with PTSD because I just locked it out of my mind not my fault I just couldn't open up..and when you feel so well for all that time and everything falls apart.. this mother who is missing is eating me up and I can stop thinking about her, incase she has PP and things go very wrong, it feel like I am being so stupid and can't snap out of it... plus don't know how I can make change if I can't even help myself.. people say to move on and let go but it just isn't any easy journey and I dont want suffering for anyone anymore if is so unfair.

[Ellie_at_APP Partner in reply to guinea1]

Hi guinea1

Yes it’s really hard when you hear of others suffering still, and I’m so sorry that you’ve been suffering so much from ptsd because of your own bad experience. I have been hoping too that the mum who left her baby in the street is ok. It’s so distressing to hear these stories.

I know so well the desire to want to change things, and I feel so privileged to now be able to work for APP and make a difference . It’s so important though to put our own mental health first , and only do what we are able to. There are many of us guinea1 who are sharing our stories, and campaigning to change things for others, you are not alone.

Perhaps because I work for APP, I have seen so much amazing change, especially in the last two years , and I do feel a lot of hope for the future, and I do think that things are changing and are getting better for so many people:

- more mother and baby unit spaces and specialist perinatal mental health teams across the whole of England, and there will be soon in Wales, Scotland and I hope so much in NI.

- so much more awareness of perinatal mental health, and pp, among general health professionals (midwives, doctors, health visitors) , we have reached so many professionals through our lived experience talks and trainings

- so many more stories in the media, including positive stories of recovery. There are two books coming out in the next few months written by women who experienced pp and sharing their story: Laura Dockrill ‘what have I done’, and Catherine Cho ‘Inferno’

- much more empathy and awareness of mental health generally, with so many high profile people speaking about their own mental health struggles which can only help

- from next year all midwives will receiving training in pp, this is something we campaigned for and we really hope this will have a big impact on people being diagnosed quickly and getting the right support

I know though it is still so hard guinea1, but I hope you know you are not alone...

Take care, I really hope you can keep getting all the support you need,

Ellie x

[guinea1 in reply to Ellie_at_APP]

Thanks Ellie

That is so reassuring to read. I know thing are getting better all the time, but this mother really got to me, just couldn't stop thinking about her and then my mind went on overdrive... it is so good to have somewhere to ask questions. I still find it too overwhelming to read others stories, I hope some day I will be able to, but small steps is what I need.

I fortunately have a very supportive gp that I trust, plus I have just put my trust in another dr so when my main doctor is off I have that extra support.. they have phoned me straight back today as I needed to talk to someone as things have been a little overwhelming the last few days... so feel a little calmer now.. these things are bound to happen on my journey... my gp looks after me and we have regular contact either by phone or face to face.. so glad I found him, as doctors scare me, as do hospitals, my road to recovery is very up and down, its finding the right things that help.

Thanks

[Pikorua Volunteer in reply to guinea1]

Hello guinea1

what a lovely reassuring message from Ellie.

Yes, changes are happening, with the occasional "odd ball" in between as it has happened in my case in 2010. However, this has got to stop and probably this is one of the reasons, why I am so passionate about informing and awareness raising, especially in the South West of the UK

I can relate to you so much, especially when struggling with "lows"... it has been nearly 10 years, and I can not change what has happened in the past, but only be reassured by everybody, who is putting so much effort into creating changes, including APP. I am so proud to be a member of this amazing organisation.

In my area finally a small crew of a perinatal team has been set up and I had to have the privilege of meeting one of the ladies...even though it is in its infant stages, I was reassured that mums will not have to experience anymore what I went through...

In addition I was part of a stakeholder family group who contributed to the interior design of the MBU Exeter. This was a very healing journey for me, knowing that there are opportunities now for mums and families in crisis within my region to get help. There is a Somerset and Devon Appartment in Yasmin Lodge (MBU Exeter), where you also can see the art work of a Devon artist and my work.

It is happening...I believe the UK is in the forefront of ventures, especially via APP. In addition I am so happy that research is developing quite drastically in order to help and support mums, who struggle with ongoing mental health conditions, such as Bipolar 1 after PPP.

In addition I am always grateful to those people, who managed to pick up the broken pieces after my traumatising experience in hospital, especially my partner, Psychiatrist, Care coordinator, GP and health visitor.

Look after yourself,

x

[Buttercup12345]

Hi I had ppp 3 years ago and when pregnant I was aware there was a chance of some kind of mental health problem accuring due to having psychosis as a teenager and then recently having a short 5month spell of depression during to a physical health complaint. For these reasons I was given a mental health midwife it was a shame there was a window of opportunity to be educated by these nurses but they never mentioned anything about any mental health problems. I asked the mental health coordinator if there was any chance of a psychosis episode occurring she said theres something called ppp but that I didnt need to think about it as it was unlikely to happen to me how wronged she was. More education is needed it wouldn't take long to equip a mum and father to be about possible signs to look for. Heres hoping for a better future in mental health awareness. Ps I had excellent care when unwell cant fault it grateful for that.

Thank you E xx

[guinea1 in reply to Buttercup12345]

Thank you for your reply, I feel sad that you didn't get that support when you asked as it was a golden opportunity missed to educate you. I am encouraged that your care was excellent and things have moved forward. It will be interesting in the next year or so to see how with the training that more families will have knowledge, so if PP does hit out of the blue it will be less frightening for everyone involved.

Take care xx

[JillianRose]

From across the pond in the U.S., I can tell you that PPP receives little, if any, attention in antenatal classes or postpartum visits. There are also few resources for us who have experienced PPP--hence why I joined APP after PPP two and half years ago. I was admitted to general psychiatric inpatient and the mother baby units where both are admitted does not exist in the U.S. I was separated from my baby for nearly two weeks and was not even allowed any kind of visits with my children. I honestly don't believe that general psychiatric units in the U.S. are well-trained in PPP and the unique challenges it presents for care providers and patients alike. I have since been treated for PTSD related to the trauma of being treated in the general psychiatric inpatient setting. Let's just say it was less than therapeutic.

[guinea1 in reply to JillianRose]

Oh I am so so sorry to hear about your experience, I too have PTSD from my experience because of the terrible treatment being in a psychiatric hospital seperated from baby for a month, though it came out 20 years later having pushed it deep inside my mind. I am glad you found support here... really hope things will improve that is terrible to think mothers suffer obviously years behind the UK... please take care and thank you for sharing this with me

[Ellie_at_APP Partner in reply to JillianRose]

Hi JillianRose, I'm sorry you've had such a difficult time in the USA. I know that things aren't good there in terms of awareness and support. It's so good that you found us, and have used us for support and information too.

There's so much more to be done internationally... here in the UK I think we're actually miles ahead of anyone else, though there is so much more that needs to be done, as this thread shows.

I hope the treatment you have had for PTSD is helping.

Take care,

Ellie X

[JillianRose]

Hi Ellie-at-APP, I was downright mad when I first read about how much different the care is in the UK and have been doing my part to share that information more widely here with care providers and other moms; people cannot change a system when they do not know what alternatives exist and work well. The thought of MBUs for PPP care sounds much more appropriate. I even found that local care providers weren't even aware of the intensive outpatient programs for moms with postpartum illnesses that were available in the U.S. I could have benefitted from a proper referral. I am making it my mission to help moms who come after me. On a positive note, the treatment I have received for PTSD is second to none. I see an extraordinary trauma therapist that has made all of the difference and family and friends have mentioned the difference they see. It came at a steep price though and knowing that only people who could afford to pay for the care can get it has me in advocate mode. I am at a point where I am truly comfortable talking about my experience and PPP with anyone that is interested in learning about it. I actually am grateful for my experience now; it has made me a more empathetic mom and human and given me a more grounded position on what is important in life.

[Ellie_at_APP Partner in reply to JillianRose]

Hi JillianRose that is just amazing that you're on a mission to make a difference, and speak out about your experience. It is through us mum's campaigning here that have made such a difference too.... I am so thankful here for our NHS which is free... always under strain of course but yes, I got the most amazing support - mother and baby unit, support from a specialist team for psychosis on return from home, including therapy, and I didn't pay for any of it.

Yes, I know what you mean about being grateful in the end for the illness, I feel exactly the same, as I have been able to make something so positive come out of it, and make a difference to others...

Do get in touch if there's anything we can help with. We have been talking here at APP about how we can develop APP internationally as we see so clearly the desperate need in so many countries, it's just difficult when we have very limited resources etc...

Take care,

Ellie XX

[guinea1 in reply to JillianRose]

I think we all have the same thing in common and aids to our healing, knowing we can make a difference how ever small... I understand what you mean about feeling mad about how others have good care, as I've have that feeling sometimes even though I want it to be better for mums and am really glad..... just conflicting emotions I don't yet understand... at the end of the day a general psychiatric hospital is no place for a new mother to be, I was so unwell I was unable to care for myself, but was left for 3 or 4 days with the same maternity pad on, had to think what would happen if I got an infection.. the nightmares of doors banging, angry patients and the phone ringing all day is now causing me problems as have had to relive everything again as never got the right processing ... sound mad now that I could have locked the whole thing away for 23 years, until I had dealing with doctors and hospitals and it was like a switch was flicked and things started to unravel, maybe it was time and the right doctor was here to guide and support me , I will never know... but all I know there is no going back.. and it is so very hard... one thing is I was very well bring up my 2 children and had so much fun and happy times with them... I am so glad I found here as it has helped me so much to understand why I got PPP and help with a lot of the shame and self stigma about being ill. Am a little less afraid of mental health doctors... though still a long way to go trust wise... but I know my doctor is there to give me support on my journey.. on day I will come to terms with everything that happened and what is happening now I know time and support will help and I don't have to keep it shut away like a dirty secret,, which I am sorry to say is what I felt all them years.. I an speak a lot freely about my experience and am was able help with the research last year and do what I can... it does help how ever small.

I feel proud of myself that with my doctors support I am still here and all the struggles have made it through all of them to date, knowing that I can make it even when things are overwhelming. X