This webinar is part of the Women’s Winter Webinars series from the National Centre for Mental Health.
We’re pleased to be offering a webinar series discussing how reproductive events such as pregnancy, the menstrual cycle and reproductive ageing impact the mental health of women and people assigned female at birth (AFAB).
Each webinar will feature our researchers discussing their latest work in each area and people with lived experience sharing their personal stories of these conditions.
We’re running these sessions to raise awareness of the conditions and they are open to the general public, not just health professionals and people with an interest in mental health research.
This webinar will share research and lived experience perspectives of Postpartum Psychosis featuring speakers from Action on Postpartum Psychosis (APP).
The charity for mums and families affected by postpartum psychosis
What is postpartum psychosis?
Postpartum psychosis is a serious mental health illness that affects around one in 500 mothers with symptoms usually developing within two weeks of childbirth. Symptoms can include hallucinations or rapidly changing mood.
Programme
Introduction: What is postpartum psychosis? – Professor Arianna Di Florio
The latest in research, support, and resources with Action on Postpartum Psychosis (APP) – Dr Sally Wilson
Postpartum psychosis across the world – Jessica Yang
Taking part in NCMH research – Professor Ian Jones
Q&A – All panellists
For further information and resources, including links to anything mentioned in this webinar: https://padlet.com/psychmedcomms/ncmh-women-s-winter-webinars-ukc7quy2q2tqu23q
Stay up to date with the latest in NCMH research and events:
Twitter: @thencmh
Facebook: @WalesMentalHealth
Instagram: @ncmh_wales
My name is professor aana deorio and um today together with my colleagues here uh we are going um to uh present the third webinar of our wi women’s winter webinar series um today we’ll talk about postpartum psychosis and the webinar is uh running collaboration with action on postpartum psychoses a charity that
Supports uh mothers and families affected by postpartum cures um today uh uh with me I’m joined in the panel of speakers today uh with Dr Sally Wilson uh from action on postpartum psychosis where she is the national training coordinator um who will talk about the latest research uh with action on
Postpartum psychosis uh then Jessica Young from cardi University will talk about her research on postpartum psychoses across the world and last but definitely not least um Professor Yan Jones that probably doesn’t need an introduction Ian is director of ncmh and we’ll talk about um research on postpartum psychosis um within ncmh uh
And then we’ll have time for uh a Q&A session and thank you um to people who have already submitted some questions and if you have more questions today I think there is a way through Zoom to type your questions and we’ll try to answer if we don’t answer um today we
Will definitely do that um in via VIA blog or um bya email I’m not sure but we’ll do that um you won’t see but behind the scene today we have Ellie shorts that will actually that manages all the time to make these uh webinars run smoothly and also thank you to Dr
Jess Haron the CEO of AP that has also um collaborated and work really hard um on this webinar so um the sty program I I’ll give you first a quick introduction on postpartum psychosis and we thought that was a good idea because postpartum psychosis actually is not clearly defined
And we’ll start with try with trying to Define this uh let me see if I can share my screen can you see this wonderful so what is the issue why do we need to Define and to answer these questions because it’s not the answer is not immediate it’s not shared it’s not
Very clear um in fact the manual psychiatrist and mental uh healthc Care Professionals use the DSM and the ICD uh 11 Edition now um don’t include this condition so there is no official definition for postpartum psychosis um so it’s an orphan disorder in this sense because it doesn’t have a
Place uh in the classification of diseases doesn’t have a place in the medical conversation usually what we mean is a term usually used by people who live The Experience stakeholders um and it’s an umbrella term for a number of conditions including conditions that are indeed included in DSM and IC for example Psy
Otic depression psychotic Mania but also for condition that you would not expect to be under the umbrella of postpartum psychosis such Mania without psychosis and also disorders are not included at all in in these two manels but one you know like they have some clinical um descriptive meaning at least and were in
The past uh used us terms to Define conditions in Psychiatry such as cycloid and schizophrenic form disorder um this has hindered research and also you know makes clinical practice difficult because we we don’t know what we’re talking about exactly what we know is that there is a specific um relationship between child
Birth and bipolar disorder and these are two population wide study conducted in in Denmark the gray bars show the risk of becoming a well after child birth in women without preuse history of um bipolar disorder or any mental illness and then in blue the risk of becoming
Unwell after giving birth in women with the history of the condition so you can see on the left schizophrenia spectrum disorder in Center at Center bipolar disorder on the right unipolar depression and other disorders as you can see the link is striking with bipolar disorder there seems to be
Something that links bipolar disorder to child birth and this is probably one of the stronger strongest Association in Psychiatry that we can see and just to see things from a different perspective if we don’t know exactly because we don’t have any definition right but if we attempt to find the definition of postpartum
Psychosis this is still a very rare event in the general population but we know for women with history of bipolar one disorder which is the most severe form of bipol disorder in of high episodes of high mood uh the risk is much much higher it’s about 20% so we go
From a very very small small risk I would say less than 1% for sure there is you know like that usually if you read the literature is between one and two in a thousand but you know like we really don’t have the instruments to know that
For sure to about 20% so there is a massive increase in in the risk of um spartum psychosis for for women with bipolar disorder um this creates further conclus confusion because is this part of bipolar disorder is it not part of bipol disorder what’s the difference between the two if there is any
Difference at all um in Psychiatry um Goodwin and goods said that diagnosis is prognosis and PD Scott went even further and said that for psychiatrist prognoses so long-term followup is what is for Physicians the postmortem so it’s really really essential to understand whether you’re right or WR it’s where you understand whether you’re
Right or wrong and that can guide us a bit for pospartum psycosis because actually indeed some women without previous psychiatric history who develop an episode of postpartum psychosis after giving birth do then goone to develop episodes of bipolar disorder outside the child um you know outside the postp pum
Period so there is a risk of um recurrence of bipolar disorder independently from child birth this uh metanalysis here conducted on on a relatively small group of of patients if you think these just 600 women a bit more than 600 women with postpartum psychosis and this is you know like
Everything we know about this um gave an estimate of about um 43% of women who did not um develop any subsequent episode of the followup so you know it’s about one one3 half of but again how long is the followup um up to 26 years
We we don’t know it’s very it’s a very difficult question to answer to be answered um when we talk about definitions and this is a bit of an academic step if you want um consideration but I think it’s really important because you know we we use
Words we use uh definitions and I think it’s very important you know like to to use the correct terms but at the same time we need to to reflect and to understand that these um names we give to psychiatric conditions even the fact that they are conditions can be argued
Um you know like they are just approximation and they need to be helpful but actually it’s very difficult for them to be real if you want valid is is actually the term we we we use in in in academic settings and definitely in Psychiatry nothing is
Uh black or white there are no discrete disease entity there are dimensions those are Contin the the boundaries are very blurred and what appears as a phenomenon that does not mean that is a valid definition of a diagnosis and I think this is easy to understand to
Think about if you want chest pain you can have chest pain because you have um you know like a lung problem you can have a heart problem you can have a digestive problem there are many conditions that can give you um heart you know chest pain and the same in the
Same way you there are many many many different conditions that can give you psychoses the fact is that we we don’t know that that well the brain is very very complicated um to try to to disentangle the relationship between bipolar disorder and postpartum psychosis we did run uh we really really fortunate and
And Cardiff to have access to this wonderful uh data set that by po research network data set which is the largest data set in the world um for postpartum psychosis and it also has genetic data which which is really really important because genetics really can provide a solid basis on the biology
O of conditions and can help disentangle relationships between disorders so we run a genetic study comparing women with postpartum psychosis and first onset so without previous psychiatric history just postpartum psychosis and then we compare them with women with a history of bipolar disorder and with healthy control from with controls from the
General population they were not screened and uh this you can read more about this in this paper here um this you know like the collection of this data said uh took I think over 20 years it was really difficult you know it’s very difficult to get to the
Publications and um really we we should acknowledge all the funders for that supported these efforts um the idea here is that if the polar disorder and postpartum psychosis are two different disorders and therefore postpartum psychosis should be finally included in DSM and ICD is that there needs to be
Something different about the two in also in the biology the iology is the same there is no reason why we should think of them separate even if the presentation looks different or you know one is after the child the other not like we need some biologic biology to
Ground the decision of having two different conditions here and to find something that separates them in the cas case we looked at genetic as I said and what we found out is that actually the if you look at the risk genetic risk for bipolar disorder postpartum psychosis and bipolar disorder quite overlap here
They are the blue and the green line you can see they’re very different from control which is the red line but they are quite overlapping the same more or less for schizophrenia this is a very tricky thing because schizophrenia genetics shares a lot with bipolar genetics so
I’m not going to interpret uh this so to dwell much into this what is really interesting here is the depression um polygenic score so the bi the markers for depressions because we here we find a a a zone of Rarity between bipolar disorder and pospartum psychosis the
Blue line here shows you the uh the the the genetic risk if you want the polygenic score uh for for depression Which is higher than the general population in bipolar disorder and we know that and you can see here on the right this this gray paper from the
Brain storm Consortium that shows you MDD stands for depression here that basically all disorders are many disorders as associated with depression it’s very very difficult to have something that is not associated with depression so there is no you know like bipola is indeed associated with depression but postpartum psychosis is
Not and this is quite a unique in Psychiatry um unique situation because usually there is an association with depression and people with postpartum psychosis don’t don’t have first psychosis on average we’re talking about averages here of course uh have overlapping um depression risk polygen cause with from people with a general
Population again we’re talking here about biology we’re not talking about how things look but there seems to be a difference between bipolar disorder and postpartum psychosis in this so you know there there is an argument to keep the two um separate you know they share something but there is also
Something separate and I think if you want to see whether this distinction would be useful or not this is a very I think fundamental study for the field by um fing and her group in which they show how the relapse um differs between postpartum psychosis and uh bipolar
Disorder um during pregnancy so women with history of postpartum psychosis do not tend to relapse during pregnancy as you can see none in the study did uh but they do have a risk of relapse after child birth while women with a previous history of bipolar disorder have a risk
Of relapse both in pregnancy here and then after this black line here in the postpartum period so there is um it’s not only there is not only a biological reason why we should start to consider those two entity separate but there also some utility some usefulness to that distinction
Um it’s still very complicated I think and this is just one example here the example of psychosis postpartum psychosis associated with antibodies and they look exactly the same as postpartum any other episode of postpartum psychosis and if you remember at the beginning I told you I warn you that considering disorders and classifying
Them and giving names just based on the appearance of of a patient how they present it about based on presentation that is you know it can be misleading and this is really a good example there’s probably not just one type of postpartum psychosis not even two there
Are probably many different types and we are just at the moment you know like looking at the surface and way more research is necessary to really understand all these different sub types of um postpartum psychosis so this thing that we observe after child birth and I still think despite you know like
The my skepticism um towards names and the fact that very often we use words that are inaccurate and that fail us I still think important uh names are important and I had a conversation with and CLA dman actually taught me this um a while ago when we published this paper
And she asked me you know so should they we call what shall we call this and I told her well what’s in a name you know um whether you call it postpartum psychosis or not it is what it is and actually she made me think that names actually matter especially for people
Who lived experience and you know like um we need this you know like we need to acknowledge this and we we need to try to convey I think the complexity um you know and the uncertainties we have but definitely definitely remember the diagnosis matters and I think really having popyum
Psychosis recognized as a independent entity from bipolar disorder but also as something that shares a lot with bipolar disorder will actually matter uh I have many people to thank definitely the bipolar disorder research Network con action on postpartum pis but I said you know also our funded funders
Um I’m at the moment my research is funded by the European research Council they’re funding also the mom study you’ll hear later and also Jess’s work so really big thank you to the European research Council to all participants to our study especially that this won’t be possible without them thank
You so our next speaker is Dr Sally Wilson thank you Ariana thank you I shall just share my screen you can see that okay yeah okay thank you thank you so um as Ariana said my name is Sally Wilson and I’m ap’s training coordinator so I’m a researcher
By background um and I lead ap’s training for health professionals and I also have experience of postpartum psychosis so AP is the UK National charity that support families affected by postpartum psychosis and we were founded at Birmingham University and are supported by the NC at Cardiff University and we started out as a
University Research patient panel really so before becoming a charity um we’re supporting and really where we support collaborations between academics clinicians and those with lived experience and that is really kind of at the heart of everything we do um so at AP um we work to kind of
Understand the research gaps um and kind of encourage communication between research Searchers clinicians and those who have lived experience and really we kind of make sure that um postpump psychosis is understood by researchers but also making sure that those that take part in research get the support um that they
Need so over the past 10 years then AP have collaborated closely with the NC on large scales with uh research studies so you know um bits about what Ariana was talking about we’ll hear from Jess and Ian later but I just want to briefly talk about about um what we’ve been
Doing in AP in terms of trying to address the gaps in knowledge and support so I’m going to just give you a few examples of some of the research and the surveys that we’ve conducted to try and kind of address those gaps in what we
Know so I’m going to start with um kind of looking at information and support needs really so our work has focused really on understanding the experiences of postpartum psychosis so what the information and support needs are for women and families going through this and I guess from this work we found that
Um women and families need more evidence-based information about postpartum psychosis and more support with recovery so over 10 years ago now women with experience of pp were trained in qualitative uh research method methodology and they LED in-depth interviews into women’s experiences of recovery so the results showed that postpartum psychosis is um life-changing
Experience and it challenges um that woman’s kind of sense of identity the recovery themes that we talked about were kind of um organized around kind of ruminating rationalizing rebuilding confidence gaining um the appropriate Health service support and the kind of facilitation of the family and the involvement of that and trying to
Understand that recovery would would take a long time really I also found that those suffering from postpartum psychosis must be adequately supported following discharge from Psychiatric hospital to help reduce that trauma and address the maternal suicide so AP was set up really to address some of these information
Support needs and resources were created um and peer support was set up so this is just an example on the right hand side of some of the information so these are our information guides um that were written with clinicians academics and those with lived experience and we have
Lots of information on our website from that similarly then AP have um focused on the experiences of Partners and The Wider family so of those that have have been affected by postpartum psychosis so we’ve been involved in understanding what it’s like to go through from a Dad’s or co-parents perspective and this
Is some research that we’ve been involved in um pulling out the themes um related to Partners experiences so don’t worry too much about this table but um it just goes through really pulling out those kind of themes um of a partner’s experience so just as an example that
Kind of loss that initial Trauma Life stopping in the moment in the crisis moment uh moving through to feeling very powerless and out of control and feeling very overwhelmed and then moving on to kind of questioning their own limits their own coping strategies and how they’re
Going to get through it all um quite a lot around guilt and regret of not doing enough um barriers to accessing care can have a huge impact on their experiences so you know if they don’t get the care that they need um for their partner then
That can have a huge impact on their own kind of recovery Journey um managing multiple roles so um you know neglecting their own needs and suddenly having all these different roles that they’re trying to to focus on so um in response to that then we kind of um we’ve created
We’ve always supported Partners um but we’ve created the um dads and co-parents kind of project where the aim of that really is to provide support for partners going through it so we offer lots of different things we offer um onetoone chats via email phone video we have a Partners online Cathy group and
We have lots of information and resources for partners um the other aspect that I’ve been involved in recent more recently is that um looking at the experiences of diverse communities so we’ve always supported anyone from from um that’s been affected by postpartum psychosis but through our lived experience Network
And research that we’ve been involved in we’ve identified kind of barriers to accessing care and also similar and differences in um experience of those from diverse communities so um just want to highlight some of the research that we’ve been doing in terms of experiences from those in black and Asian
Communities so in terms of the barriers to kind of Engagement with services and third sector um this was sort of you know why is this happening we found that um there was sort of negative perceptions or negative previous experiences within Healthcare um so then they they they don’t sort of seek that
Help out lots of stigma and particularly around um postpartum psychosis compared to other perinatal mental illnesses and we’ve also found that um cultural pressures and beliefs within family have had a big impact on experiences and recovery so fam’s beliefs that you know it’s um weakness or um they feel very shameful about
Everything that’s happened so that causes people not to engage with with services or seek help and then we have kind of um language barriers so not having the language just to describe mental health illnesses which I’m sure Jess will will’ll talk a little bit more about
Later but we do know that there are enablers of accessing care and aid in recovery so um just knowing about postpartum psychosis in the first place and knowing what care is available for example The Specialist perinat Mental Health Services out there um experiences are being heard and supported have a
Huge impact on recovery and having supportive um partner and family through that process make makes a big difference so in response to this research then um we’ve set up the diverse communities project with the aim of increasing support from from those in different communities so I just want to talk
Through a few of the things that we’ve done over the last couple of the years so so um the number of families accessing peer support from black Asian and minority ethnic communities and LGBT plus communities has significantly increased over the last few years um we’ve increased a number of diverse
Stories um from families we’ve launched the AP online Muslim Cafe group and we have plans for a cafe group to support um those from black backgrounds as well we’ve increased diversity within um the national team and we’ve um run different social media campaigns about postpartum psychosis um in collaboration with other
Amazing organizations like five times more so getting that information out about postpartum psychosis in their own communities and working in partnership with um other diverse peer support organizations as well and then we’ve also um launched some training so um for health professionals in terms of supporting diverse communities that are affected by
Postpartum psychosis so I think those those few bits of um work that we’ve done have sort of highlight um that how we’ve used kind of lived experience to inform um some of the things that we do in AP so I’m going to talk a little bit about our care and Recovery outcome
Survey so um we’ve surveyed uh women affected by postpartum psychosis and looked at the changes in care and outcomes over the past 10 years so the care outcome in 2010 was used to campaign for better Services across the UK to ensure everyone who experienced postpartum psychosis had access to the care that
They need and then we repeated that survey in 2021 and positively we’ve found that the care overall in the UK has improved um so you can see here that the number of women um admitted with their baby has um significantly increased so on the leftand side in 2010
We had about 33% admitted to mother and baby units with their baby and then um more recently we have about about 62% have been admitted with their baby and then similarly then we see that satisfaction with care has um increased over the last 10 years across the UK um
So things like um feelings of safety being informed about the illness um support with recovery and feeling recovered has has significantly increased over the last 10 years which is great news we still um see less satisfaction um of care in those that are admitted to General psychatric units with without their
Baby um so little still a little bit more work in to do in terms of understanding what you know what what that means and why that’s happening and what care needs needs to happen in the future but from that survey we’re able to look a little bit more um in depth
Into into recovery so we’ve I just want to highlight a few of those findings um we found that um recovery can take anywhere between kind of six months to three years or Beyond it’s very individual it’s not necessarily a line linear process so it can take a long
Time bit of a roller coaster to recover um the initial psychosis can be followed by other mental illnesses such as depression anxiety low self-esteem and lots of work around guilt and own self-stigma in the 12 months after discharge from hospital we see um about 30% were readmitted to hospital um and
That not necessarily for psychosis for other um mood disorders as well and about 50 % have Suicidal Thoughts so really highlighting that impact of that longer term recovery and what we need to put in place to support those women and families then I just want to highlight
Um a little bit about peer support and the role that that plays in kind of recovery and longer term recovery um we found in AP that nearly about onethird said that they might not be here today without ap’s support so I’m just the final thing I’m
Just going to highlight a piece of work that we’ve been doing is um an anti-natal campaign so we’ve repeatedly heard from those who lived experience that if only they’d known about postpartum psychosis and things might have been been different so we conducted a ugv survey a couple of years ago and
Found that about 6% of expecting parents were given information about postpartum psychosis and then we believe AT AP that all expectant parents and health professionals should know about postpartum psychosis so that we can spot the signs and symptoms and get that help more quickly so we also surveyed um lots of
Different antinal education providers and we found that 88% of them thought that postpartum psychosis should be talked about in antinal classes with expectant parents um but only about 50% of them did and the main reasons for this were um a lack of time to cover all the topics um that they didn’t know
Enough about postpartum psychosis themselves um and they didn’t want to scare parents so from these data together with um lived experience we’ve um created some resources to help to have those conversations those potentially life-saving conversations with expectant parents and again we’ll drop all those kind of resources um um onto the padlet resource
Page so hopefully I know that was very quick running through um some examples of how AP have addressed some of gaps in the knowledge and Care um and support over the last 10 years and I guess moving forward we need to make sure that we collaborating together um and
Encouraging more research in postpartum psychosis and with the the voices of lived experience at the heart of it all really and then we can start to answer some of the questions that we still have about about this illness um however I’m slightly biased um because I am a researcher by
Background um but also I know that without the research um that’s already taken place I probably wouldn’t have been able to find the right treatment for me and the support for me to get better so I developed postpartum psychosis very quickly after giving birth to my daughter in
2015 um it took us a long time to access the right treatment for me just because of the lack of specialist services at the time um after months of kind of continued psychosis and severe depression um and living in what seemed like a daily nightmare um I just wasn’t getting any
Better so my husband who luckily for me as a researcher um spent days uh searching through all the literature on postpartum psychosis and in particular looking at evidence-based treatment for postpartum psychosis and ended up read reading a lot of the research from the nmh and colleagues as well um so because
Of that I was able to access um the treatment that I needed um access Pier support through AP and make a recovery and without all that I’m not sure I’ll would be sitting here talking you to you today so I want to end really by saying
Thank you for listening to me but um a massive thank you to all of those who have shared their experiences to help improve care and outcomes for others in the future so thank you for listening and I shall hand you back over to Jess so yeah my name is Jessica Yang I’m a
Research assistant and second year PhD student at the center for neuros psychiatric genetics and genomics and today I’m going to be talking to you about some public involvement work that we did um across the UK Malawi and India okay great so as Ariana has spoken about the diagnosis difficulties surrounding
Postpartum psychosis already I don’t want to go into too much detail about this but I did want to touch on it really because it really forms the basis of our motivation to do the work I’m going to be discussing today um what’s clear is that there are significant gaps
In research and knowledge in postpartum psychosis and most of what we do know is based on evidence from Western societies and this is despite postpartum psychosis being prevalent globally and so this confusion around classification has definitely hindered early identification treatment and research and so there’s a real need for a cross-culturally valid
Definition of post basum psychosis so for this project we worked closely with our colleagues in Malawi and India which I’ve indicated on the map and together we organized public involvement activities in the form of discussion groups with three key stakehold groups so that was people with lived experience of postpartum psychosis
Which I’ll refer to as the pp group family or friends who may have supported someone during an episode and healthc Care Professionals who may have been involved in the pathway to care and you can see the number of people within each stakeholder group next to each country
And as I’ll mainly be focusing on the UK sample I thought it’ be good to show a breakdown of the composition of stakeholders within our Healthcare professionals and our family and friends group so for the healthcare professionals we had health visors who visit mothers at home postpartum we had
A midwife and also a range of professionals who specialize in perinatal Mental Health Services and then our family and friends group included partners of people who had experienced postpartum psychosis so what we did is we asked them to First input on a postpartum psychosis research assessment tour such
As its questions the language and the usability and then we also asked our stakeholders to explain to us what their understanding of postpartum psychosis was so its characteristics how it’s treated and what kinds of labels they would use to describe an episode and what we had originally set out to do
With this project was create a single cross-culturally sensitive research assessment tool which will help us identify cases of postpartum psychosis which we could then use to conduct genetic analyses but what this project quickly turned into was an exercise to explore whether this term and these symptoms and this experience had the
Same presentation and meaning in different countries so I’ll take you through the results of the UK discussions for now and then we’ll touch on the crosscultural comparisons after first what we wanted to do was get an idea of the kinds of labels that people were using to describe an episode to see if
Postpartum psychosis was a useful concept and here I tried to demonstrate how often each label was talked about by the size of the circle so all stakeholders were in agreement that the majority of the labels for an episode centered around diagnosis but not all of these were postpartum psychosis everyone talked about this
Confusion between postpartum psychosis and postpartum supression but also noted other conditions such as anxiety and OCD healthc Care Professionals also noted the use of more General terminologies such as mental illness and the family group discussed how at the time the only label they had with their limited knowledge was
Madness the pp group and family also talked about not being given any kind of label in particular at the time of the episode and people noted that this and the use of alternative labels might have been a result of stigma and I think what the take-home message from this is that there is
Plenty of heterogeneity in the kinds of labels that are used especially considering that No Label was reported almost as much as postpartum psychosis and I think what’s also important is that the postpartum psychosis label tend to be used retrospectively after the episode and after people had had an
Opportunity to seek more information and I think this really highlights the need for a proper definition for postpartum psychosis which might help to reduce this confusion and so we also discussed symptoms and characteristics of postpartum psychosis and here the colored dots signify the different groups and the number are an indication
Of how often each symptom was talked about per group all Stak all stakeholders highlighted Mania distorted reality and the presence of situational and environmental risk factors such as medication changes and stopping breastfeeding as well as depression as major symptoms the pp group and Healthcare professionals specifically noted the presence of severe depression
After the initial acute manic or psychotic phase whil family noted depressive symptoms more generally the pp group and Healthcare professionals also stressed the significance of hallucinations and disorder to sleep but there were some differences heal profession focus on clinical onset indicat indicators such as change in Behavior or risk of harm
Whereas the pp group focused on concentration and physical symptoms and having occasional insight into the episode which is in contrast to healthcare professionals who tended to reference a loss of inside partners then noted completely different symptoms still citing what they term strange Behavior such as screaming or pupil dilation during the
Episode as well as comorbidities such as infection being present as well and I think what this highlights is that there are similarities in symptom reporting but they can also depend on who you ask and this is important because you might not conclude the same diagnosis from discussions with family
And compared to talking to the people experiencing PP themselves and another important thing is that most of these symptoms are not in a diagnostic criteria which suggests the need for an update on how the manuals classify postpartum psychosis so to give you an idea of how postart psychosis is treated within
Service in the UK um again here I tried to demonstrate the frequency each item was discussed during using the size of the circle and we had two main areas of discussion here use of education and service provision all stakeholders agreed that admission to an mbu where mothers can stay with their
Babies and medication was also helpful for Recovery everyone also noted that if women had a previous history of mental illness Services tend to be more involved the pp group and family had many common views here um have many common views here such as medication um not always being helpful
And requiring trial and error and they also reported many areas that did help with recovery such as mbu support in daily activities arts and crafts cooking that sort of thing and they also talked about third sector support so some people experience volunteers from AP coming and providing support and
Visiting but this could also be quite variable across the country as well the pp group and family also noted that family members tended to be the first point of contact for seeking help from Services the pp group specifically mentioned The Importance of Being provided information at the time of the
Episode as well as afterwards as they found this really helpful for Recovery healthc Care Professionals tend to focus on Health Services differ a lot across the country which was also noticed by the pp group as well and what this suggests is a considerable amount of support is available across the UK but
There is a lot of variability as well but it is important to note here that the UK groups that we talked to were people who tended to have received some form of specialist support and also a lot of specialist Healthcare professionals and so this may not be completely representative of everyone’s
Experience it’s also important to note that although services are technically available within the UK plenty of barriers to care also exist and this was also an important discussion point in our focus groups generally all stakeholders were in agreement that the main barriers to care was the fear of
Social Services taking away children and also the significant variation in knowledge particularly for healthcare professionals dealing with the condition four stakeholders reported limitations of services but the specific limitations themselves differed so the postpartum psychosis group and family highlighted the need for themselves to take an active role in diagnosis and
Treatment and this was because of a general lack of support and communication from Healthcare professionals during the course of the episode as well as recovery and they also reported that people with postpartum psychosis may try to hide their symptoms for a variety of reasons including a mistrust of services Healthcare professionals on the
Other hand focus on issues around identification and diagnosis of postpartum psychosis partly because of difficulties with Gathering accurate and complete family and personal history and they also noticed how family and The Wider support network may have specific views on treatment and care which don’t align with what is
Recommended we also wanted to understand whether the impacts of an episode were consistent so all stakeholders agreed that people with postpartum psychosis tend to respond well to treatment generally in terms of symptom remission but that people might have trouble remembering the episode later on healthc Care Professionals noted that treatment
Resistance was possible in particular for those who come to a diagnosis later on and this was also picked up by family members as well the pp group and family noticed medication side effects also concern about relapse and it’s really important to note here that they really stress the difference between being in
Symptom remission which could take a matter of months and feeling mentally well which could take years the pp group also referen a loss of self and family tends to report the impact on the family and wider support network but also the potential for positive impact because many people
Became involved in volunteering as a consequence of their experience as well so finally we discussed focuses for research all stakeholders mentioned needing more information on the genetic and environmental causes and risk factors for postpartum psychosis Healthcare professionals and the pp group were also wanting to focus on translating research especially for
Healthcare professionals whilst Healthcare professionals were interested in looking at environmental risk factors including stress the pp group were also interested in outcomes for example for single mothers or problems or people who experienc problems during pregnancy and family were interested in comorbidities such as long-term effects such as
Menopause as well as prevention and I think what this highlights is that apart from the causes and risk factors different stakeholders do seem to be interested in different areas of research and so that really concludes the main findings from the UK discussions but I hope what this has
Shown is that our UK stakeholder groups were pretty consistent in their reporting of their understanding of postpartum psychosis and I think important differences that emerg that we can probably attribute to the specific role that these people play in their experience of postp pass and psychosis so for example Healthcare professionals
Focusing on clinical onset indicators and risk concerns whilst people who experience postpartum psychosis tend to report thought related symptoms and family tend to report symptoms that they can physically see and I think these nuances need to be considered when information gathering through research so thinking about the crosscultural aspect then in Malawi and
India we had very similar discussions taking place and together as a group we noticed some important similarities and differences between the countries what we did note is that there was actually a lot of consistency in the presentation of postpartum psychosis particularly within symptoms and characteristics it seem it seems to be
Handled similarly within Services despite differences within the services themselves and the impacts of these episodes are similarly reported and similar barriers to care also exists across these three countries and I think what this suggests is that there are enough similarities to conduct future Research into postpar psychosis across cultures but it’s also important
To note that the majority of our stakeholders included Healthcare professionals generally trained in a western medicine approach and people who had received mainly Western medicine treatments but differences did seem to emerge in particular within the non-medical approaches the treatment so for example the use of traditional and spiritual healers this isn’t something
That came up in the UK but did in India and Malawi and this may be because of the prevalence of these practices in those countries being higher but it also could be due to the lack of diversity within the UK sample there was also differences in the
Kind of labels used in the UK they tended to center around diagnosis whil in India and Malawi they tended to use labels that describe symptoms or causes of the episode and so the take home message from this is that postpartum psychosis does seem to present similarly across country countries and yet there are
Important social cultural and language differences which ultimately means that a single cross-culturally sensitive research assessment tool is not really possible for ascertaining cases of postart psychosis and so I think what we’ve seen is that PP seems to be fairly homogeneous as across cultures but there are important differences that need to
Be factored in during research and I think I hope what this work demonstrates is a practical way to improve the Western bias that we currently seeing in research by collaborating C culturally early on and including stakeholders in research decisions at an early stage as well and I think what I hope this means
That we can be cautiously optimistic that postpartum psychosis will continue to be consistent across countries so we can start thinking about building a crosscultural cohort of postpartum psychosis cases it’s historically been very difficult to get large samples of postpartum psychosis because of it being a rare disorder and the issues
Surrounding diagnosis and classific ation and so a crosscultural cohort would be really beneficial and this is not really possible without having a clear definition of what we’re researching and so we need to be careful to balance the requirements of having this large data set and really good
Quality data and this has to factor in sort of the necessary social and cultural aspects within the specific cultures so we can conduct that high quality reliable and valid crosscultural analyses and if we can do this the resulting analyses will really help us to understand the biological and environmental underpinnings of
Postpartum psychosis and I do think the best way to approach this is to continue our work in trying to create these assessment tools that factor in these social and cultural contexts and then testing and validating them within that context as well so if you’re interested and would
Like to have a read of the paper I’ve put the QR code for it in the top right hand corner um I’d just like to finish with a few thank yous to our stakeholders and action on postpartum psychosis who were so important for this work and also the NT and um
International postpartum psychosis Consortium and my supervisors as well thank you very much thanks for listening excellent so I think it’s my turn now just to come in at the end um I know we haven’t got much time left so I’m going to be incredibly quick let me just share my
Screen let’s have a look better is that shared okay can people see that right I’m going to be incredibly quick just going to take a few minutes your time to talk about the importance of research but the importance of you as a uh a woman with lived experience um in
Collaborating with us uh to to do research the reason I can um be quick is that really what I’m going to say it’s been said brilliantly by this genuine um headline in the newspaper new research says that researchers valuable researchers glad so that’s what I’m
Going to do I’m going to talk about why PP research is important and then finish off with a plea for your help so what do we know well there’s a lot we’ve learned through research already about PP and you know uh the talks from um all the
Panel that we’ve had today have been fantastic examples of that so I’ve listed some there but I’m not going to go over that again but he is I think there’s so much more that we still need to find out and I’ve listed some of those questions there how we predict
Those women at high risk how the best way to help those women at high risk stay well um what causes PP and how can we use that knowledge to develop better treatments how do genetic factors impact on risks what about the risk at other times eaching menopause which is such an
Important question for many women what are the biological the psychological and the social factors what is what therapy and what can best help women in their recovery and how can peer support through organizations like fantastic AP help women and their families so that’s kind of a brief lift I put together when
I was thinking about this last night there are many other questions I’m that need to be added to that list and that’s one of the reasons why we need your involvement we need that lived experience to guide us to what are the important questions for you and for your
Families so why we need research it’s only way that we’re going to get answers to these questions and there are potentially massive benefits that can come in prediction in prevention and in the treatment of pp that could come from a better understanding of this condition so we need collaboration between researchers between
Clinicians the third sector such as AP who’s been such a brilliant uh uh collaborator on some of these projects but most importantly we will not be able to do anything without the help of women with lived experience of pp so that’s my talk done just going to leave you with a
Plea is is for you to sign up if you’ve helped with our res before but haven’t done our online um uh survey our online study please uh still uh sign up uh Ellie who’s looked after us today we’ll make sure that you all gets emailed a
Link that you can just click on that will take you through to the landing page and I think Ellie in the um chat today has kind of added those as well so so my plea to finish off the talks hopefully got a few minutes for questions is we’re not going to do
Anything without your help so you we really do need you you you to help us with that I’ll stop Sharon and hand you back to our chair thank you Ariana thank you wonderful thank you y h but also Jess and S wonderful presentations so uh we can I U into Q&A
So we have a question um and I think this could be both for uh Sally and Jess uh do social care services automatically get involved when a family friends raise concern about a woman in the UK does this normally happen through the GP putting in a safeguarding concern Sally
Do you want to to answer to this or Y just yeah I guess um it’s not consistent across the the country I don’t think so yes we do tend to have uh women and families being referred to Social Services um for safeguarding um I guess that um it’s a about finding out what
Support is around the woman and family um uh I guess from lived experience perspective it’s really hard particularly in terms of the one reason you don’t want to tell anyone that you’re really poorly is the worry about your you know Social Service involvement and thinking your child’s going to get
Taken away and then and then you tell someone and then Social Services get involved so I think it’s about that understanding about what social services involvement means and um you know the kind of phrase and language used around it in terms of all that you know we’re getting them involved because you’re a
Risk so I think it’s working out how we do that better but yeah it’s not consistent across the UK I don’t know if anybody wants to add anything I I just back back that up really to I think if a referral is made you know women and their fam shouldn’t interpretate that as
Necessarily that the baby’s going to be taken away it the referral is about making sure the help is there to help you um in in in whatever way ways needed and the other point that Sally M really wanted to back up was was you know getting help will be seen as a real
Positive so seeking out help getting treatment will be seen as a real posit positive benefit so yeah um that’s the two things I just wanted to add fantastic now um I’ll read out loud uh the questions we got uh in advance um some of them were on treat on specific
On treatments and I think Sally presented for example the time to recovery that varies a lot and I think I think it’s a little bit the same with treatment it it varies a lot um you know case each case has got his own story and I think it’s difficult to to give
General um you know make General comments uh without uh knowing the specific case so for example one question was how long does someone remain on antipsychotics after it was part psychosis episode I think the answer is it depends really on the situation uh the second question was how do you feel
Do you feel all NHS staff should receive perinal Mental Health Training I would say yes I don’t know what the rest of the panel thinks I think this is H speaking to Sally Sally’s designed and delivers fantastic training to enesta from PP she’d be the best person to talk
About this I think yeah I think well one of our aims really in AP is to make sure that all health professionals on the front line in that perative period that come across families um in the perative period know about postpartum psychosis and know what what to do so one of our
Aims is to make sure we’re reaching all those health professionals and you know we train um specialist parat mental health teams but um GPS Health visitors midwives anyone on the front line really needs to know about it um to spot signs and symptoms and and know what to do
With it really so yeah my my answer is yes to that question um what is the best um terapy intervention for postpartum psychosis I think I think it again it depends um Case by case you can read a paper about F bagging that they had um quite not
Complex but had they had quite an articulate treatment algorithm on this that was public published in the American Journal Psychiatry again I think it’s really person it depends Case by case um is it true that women who have previously experienced postpartum psychosis can also struggle or experience another psychotic episode
Around the time of the Manus I think there are case reports on this we are running ourselves some re search now so please stay tune um this is really something we are pursuing in collaboration with ap um I do believe there is a link between um menopause child birth hormone hormonal changes and
Bipolar disorder and I think we close to uh publish a paper now on on this topic so I think it’s likely to be a link we know very little at the moment there are there are only case reports on this specific topic uh anything else the
Panel wants to add did I just pick up on that question about the best treatment yeah you’re right Ariana definitely that it’s very individual but two things I think would may be worth M Points may be worth making one is that in the initial phase of the severe episode it’s it’s
It’s it’s you making sure the woman and the baby are safe you know thinking about admission to hospital and in that initial psychotic phase definitely it’s it’s kind of biological treatments medication that are the things that will help get women well but that’s not to
Say I think AP have done a lot of really important work on this suggesting that women need um uh more psychological support in the medium to long term to come to terms with what’s what’s happened to them and that’s where peer support from AP really comes in into
Into its own and it’s probably the bit that that Services don’t do as well giving that psychological support and therapy needed to come to terms with with with with with the diagnosis I don’t know s if you’ve got anything to say about that but that really has come
Out of the work that op has done isn’t it that that might be not done as well as it should be yeah I mean as I as I talked about that kind of initial 10 years ago what people really wanted was that more information about that recovery phase and then you know after
Discharge from hospital that’s kind of where the recovery starts and and we we need to know more about the kind of longer term impact in recovery you know like later in menopause and other things going on but we we support anyone affected by PP so we could have you know
Women that had postart psychosis 25 30 years ago so we started to look at that lifespan really so yeah if can it ever be known what the definite cause of postpartum psychosis is is um and if so I should this determined as I said during my presentation I think there’s more than
One type of postpartum psychosis and most of them are likely to be multifactorial to be a relatively rare disorder is so complex itself and so heterogeneous itself and again for certain women might really be like an immune autoimmune response which is a bit more obvious but this is only a very
Small percentage of them I think in most cases it’s likely to be multi factorial um I I I would uh go to the next one how can the provision of safe and effective support in Mental Health Services being improved I think Sally s do you going any any thoughts my my
My immediate thought is is Services need we need better Services across the board in mental health that that we’re we you like many without wishing to be too political on budget day you know we’re probably going to have some tax cuts today um um I don’t think that’s what
The country needs I think we need need you know better Public Services I think we we’re struggling a little bit so without turning this webinar Ariana apologize for turning it into a going more political I think we need more resources we need better funding we need better Services across across the board
A massive change though in par mental health has been the development of specialist Services over the last decade or or or so and I think that’s making a real difference you on the ground as can be seen in in um ap’s data so sorry if I
Was too political Sly over to you no I I just agree but I think um you you’re right it’s we H we’ve had massive expansion in specialist services and then maybe it’s about working together across you know all the different services to making sure yes their specialist but you know does everybody
Else know about what what it is and what they should be doing for that for that Journey as well so fantastic thank you and thank you for being political otherwise we won’t be here wouldn’t we um then there is another question about medication typically used in the treatment of postpartum psychosis um so
We we talked a bit about antipsychotics in the questions the what was um a lot of emphasis on those um um mul stabilizers as well and um and again it’s really I’m talking about broad categories here um one what medication that today was not mentioned but can be
Used is leum and in my experience is really country dependent and even you know there are countries where lithium is more prescribed and countries in which lithium is less prescribed another thing that I think emerged uh from the berging paper I was mentioning to you on treatment is that as more proportion of
Women women that present with symptoms that look like postpartum psychosis get better just with Bodines which are basically sleepy pills if you want like quite commonly used uh without going into antipsychotics or mood stabilizer again that’s very small proportion remember like this is already relatively rare disorders and then we got small
Proportions of people within the rare disorder that respond in different ways um the next question I’m going to um rephrase it a bit more General is a question about um the link between bartum cuses and infanticide so it’s quite a bit of a triggering question but
I’m grateful um that the topic uh was uh brought up by um the these participant to the webinar because I think um this is a very can be very stigmatizing and very difficult to discuss topic and this is I think why we need to discuss this
And try to uh do that um you know in an evidence-based uh form and of course with compassion and professionalism and um the question was also how would you would you portray and explain to the public reasons behind the death and encourage compassion towards the mother than hate and negative
Feelings I think that is whole culture like hate culture and you know like I think there is very little we can do to prevent that in the social media where are too big for us I think on our personal reality we can look at evidence and we recently published um case series
On infanticides and those associated with postpartum psychosis the element that I think was really clear is like again lack of appropriate treatment and recognition I think again um this is a medical condition and you know like there are medical conditions that you know if not treated lead to adverse
Effects you know like I’m thinking as any condition as any medical condition in this case there is this this this risk and I think again it’s almost always if if you then think about the cases was you know like an underestimation of the risk or the wrong
Medications given or um you know like so it’s very difficult of course to prevent to predict such rare events and again I want to emphasize this the majority of people with postpartum cyclosis do not you know thank goodness do not have that event but again really important to
Remember that it’s very you know like it’s very important to be evidence-based in this Sally no I just think you’re right in terms of um yeah the stigma involved with that and it’s about lack of understanding and lack of awareness and and we can prevent these things happening by making sure that everyone
Knows about it and knows what to do with postpartum psychosis I agree I think uh the last question was about a useful question clinicians may ask to mother and the families um uh in Rel to detect postpartum psychosis I think I wish it was that simple I think
It requ really a lot of time to with the patients to diagnose this and really be really careful and thorough do you have anything to add on this sorry I didn’t catch the question uh useful questions clinicians can ask to mothers and their families after child birth in to prevent or detect an
Episod of postpartum psychosis good question difficult to answer I think s you got any thoughts um I guess it’s about um being open and honest and asking firstly having an awareness of postpartum psychosis as a health professional so you know what you’re looking for but also you know being honest and asking
How that person’s feeling and and making sure the’s space to to have those conversations I think so the other things and Sally hope you don’t mind me me me you know talking about because I know you’ve talked very openly about about your illness but postmart suus can present in very
Different ways and somebody who’s really overthe toop Manic and psychotic yeah causing difficulties and problems it’s very obvious but in your case your your psychosis was more internalized if you if you can say that so I think we have to be aware of that range of presentations and just because somebody
You know woman’s not causing you know hu huge difficulties and problems in the family you know not miss th those cases like like yourselves so hope you don’t mind me bringing your your your your story up but no that’s fine it’s it was very much going on from the outside it
Just looked like I was exhausted and very vague and and behaving a little bit oddly and but I kept telling people something wasn’t right right as I know there’s something not right right so it’s it’s listening and hearing that woman and like you say not having these preconceptions about what psychosis
Might look like yeah and also I think who might suffer from it because half of people with postpartum psychosis don’t have a previous psychiatric history it’s one of the very few psychiatric disorder not associated to socioeconomic factors so do not expect that because somebody looks in certain and way might not
Suffer from spartum psychosis good point fantastic any anything else from anyone thank you so much guys thank you to our audience and we’ll see you if you will wish to the next one on hypersexuality and bipolar disorder enjoy the rest of your day thank you Ariana for chairing thank you bye