Hi there,
As a black mum I have had quite a shocking experience in the mental health system and also very bad perinatal and post natal care. Are there any other mums of colour who have had ppp on this forum. Would like to know what your experiences have been.
If you're not black and have also had poor care I'd appreciate hearing your stories too.
Jo
To the APP volunteers and moderators I know that APP have specialist workers from the BAME Community, have you come across any BAME ladies during your work and are there any systemic issues that you've come across during your work.
Jo
Hi Josephine,
I am not black, but I have felt entirely mistreated and misunderstood throughout my ppp experience, and believe it is in large part because I am a woman. And I’ve often thought about how I could not imagine if I were a black woman - the oppression from all angles must be unbearable. You are not crazy. You are not getting the treatment you deserve. And while our experiences are inevitably different, you are not alone,
More than anything I have found that the medical world does not think it is important for me to trust myself, nor to have the power to make informed decisions for myself. I do not think that a man would be treated this way. I often call upon Audre Lorde who wrote “the master’s tools will never dismantle the master’s house,” and what that means to me is that relying on what my doctors have had to offer me to really truly heal on this journey has been cyclical, patriarchal, and pointless bullshit. Medical school doctrine is largely based on that of white men, and so even most of the female medical doctors I’ve seen, who have gone to those med schools and worked hard no doubt, are basically just white men reincarnate. When I ask questions and demand more information, I am typically met with cold, bored stares or incomplete “because I said so” responses by most medical doctors, who, since my ppp, have written me off as having a mental illness and frankly someone they just don’t have the time for. For a long time I wrote myself off too. But my spirit is not quitting. I have a son who needs me to not give up, and I have an inner girl who has been treated like shit and humiliated and taken advantage of most of her life, who needs me to not give up. I am finding comfort in nature these days. That’s what my spirit is calling for, for now. And one day if and when I want to have another baby, I know I will have to make peace with the medical world and accept its systemic failures because lord knows I’m not changing them during my child bearing years. But I’m not there yet.
Whatever you are going through, I hope you find your spirit (or perhaps you are lucky and never lost it) and believe in yourself. It doesn’t matter if “they” think they are treating you appropriately- if you do not feel like you are receiving the right treatment, then you’re not. Trust yourself.
Maya Angelou said that people will remember the way you made them feel. The medical world is making you feel like shit. They’ve made me feel like shit. That is your truth, and it is not fair but it is your right to continue to fight for the care that you need and deserve. We just might have to accept that it’s possible our truest answers don’t lie in the doctor”s office, the way healthcare operates these days.
Hi there Kat,
Thanks so much for reaching out. I've had such a horrendous time of it. It started out with having extremely poor antenatal care. We moved house when I was about 7 months pregnant and I wasn't given a named midwife or care team. I was repeatedly sent home when I kept telling midwives that baby was in distress and was going to come early. Then he came by emergency cesarean section due to his heart rate dropping off the monitor.
My first couple of nights in hospital nobody helped me breast feed or even gave me formula milk.
My husband had to beg the staff for milk for the baby. Then my son had lots of congenital issues and the health visitors only came to see me once. I don't know why.
My story has been one of neglect and gross medical misconduct.
I am now over diagnosed and over medicated on a cocktail of drugs and have a nhs psychiatrist who has been so harmful that I've had had to now pay for a private psychiatrist who is wonderful but costs a great deal.
My private psychiatrist has given me the diagnosis of severe trauma and has told me that she feels the NHS diagnosis of Bipolar is wrong.
I find that I am viewed less favourably and kindly because of my colour. I've read stories on the forum of other ppp mums being weaned off their meds with the full support of their doctors. My consultant won't do this and rather has told me that she would put me on a community treatment order if I have another episode of illness. Something that I don't think she'd have said if I was not black.
I agree with you too that there is a very patronising attitude with the mental health teams especially the psychiatrists.
I've recently written to PALS to ask them to intervene because I have asked the NHS psychiatrist 3 times for a referral for Professor Ian Jones Cardiff University expert. She has simply ignored my requests.
As I've mentioned too in previous posts I'm on such a high dose of meds that I'm now partially disabled from it.
If your black you're more likely to be sectioned, over diagnosed, disabled by psychiatric treatment and not recover.
My child bearing years are over. The antipsychotic I'm on gave me the menopause. I feel very angry and powerless about it all.
But hearing your experiences I agree its the professional misconduct which is the common denominator,
Wow Josephine, I am so incredibly sorry. That sounds horrific. I don’t even know where to begin. The fact that you had to beg for milk after a traumatic birth and a child with congenial issues feels like a lawsuit on it’s own, let alone everything else youve been through. Not that I know anything about lawsuits, particularly if they were to come from people like us with ppp. Likely not worth the energy it would require.
You probably, like many of us, had trauma from your past that contributed to your psychosis, and now you’ve been traumatized all over again by the ppp experience. I had a few docs say it to me could be bipolar but no official diagnosis because there’s such confusion about ppp in the US, and now my current therapist who I do like but doesn’t prescribe and, yes, is private and costly, treats me for post traumatic stress disorder.
As for meds - I went off them without my psychiatrist’s consent, but it sounds like this was a privilege. He (a resident who hasn’t completed med school yet, but I had so much difficulty finding a psychiatrist for ppp, and he works at one of the supposed best hospitals in the world, so I stuck with him) was moving so slow, keeping me on high doses for way too long, making no real changes until I got hospitalized for a third time. At one point he said to me “I really don’t know why you’re so depressed on these meds, it doesn’t really make sense.” I did it on my own, one med at a time, separated out by a month. I had wanted to continue on my SSRI antidepressant but once I was off the antipsychotic and mood stabilizers, he said that an SSRI could trigger psychosis, so I had to stop that too. I was on my cocktail of meds for over a year. They made me feel cloudy, exhausted and ultimately suicidal. I needed desperately to be able to trust myself and my body again, and while I can say that I have felt better and clearer now that I’m off everything, the loneliness and stigma have not gone away. It also means that any time my husband and I have an argument, he can now point to me being off my meds, and claim thats the cause - conveniently helps him avoid ever having to look at himself. I don’t think our marriage is going to make it. Our beautiful son is almost 2.
I am not sure what a community treatment order is, but it sounds like you were told you better not have another episode, and that you have no autonomy to go off your meds. That does sound like oppression and prejudice to me. And it’s completely suffocating and I am so sorry. It’s threats like those that end up making people walk right into the fate they are trying to avoid. When you are treated like a caged animal, like you could snap at any moment, it takes everything, and all the sincere communal support you can find to not become that.
To have no support at the hospital right after your son was born by emergency c section is just beyond. I cannot even imagine the fear and confusion you must have felt. I am so glad you have a husband who, it sounds like, is there to support you.
I wish I could tell you there’s a way out of this hell through joining a beautiful in-person community somewhere, but I haven’t found that. All I know how to do these days is love my son, stay employed, and take my dog on nice long walks.
Hi Kat, it sounds like you have also had a very awful time of it and I thank you from the bottom of my heart for your empathy and caring. I really needed it and its a shame that I didn't have this forum 20 years ago it would have made all the difference to know that I wasn't alone. My son was 2 when I had my first full blown psychotic episode but now I think about it I think that I was getting ill during the pregnancy as I had hyperemesis and was vomiting all the way through it was terrible. I needed a good GP but moved into an area where the GP was very old and old fashioned and didn't have time for me. Interestingly he was from an ethnic background himself, different one to me but there was cultural block. I think also moving at 7months wasnt a great idea I should have waited until the baby had arrived and kept with my excellent GP and midwives that I had where we were previously living. The GP then was young also from an ethnic minority but he was wonderful, he actually said to me Jo you're going to have a very delicate pregnancy I will drive out to see you so that you dont have to come to surgery. Then the midwives that I saw when I was first pregnant were all white but they were fantastic. It was when I returned to London to incredibly a more racially diverse area that I started to experience far worse care. In the big city which presumably had bigger budgets for staff and equipment I was invisible and I gave birth in a hospital where the cries of the women in labour were chilling. They were short staffed that day that my son came and I had been sent home numerous times that week by different midwives who were uncaring, cold and cruel and told me that I was imagining things when I told them that my baby was in distress.
I wondered if I was getting so much disapproval because my husband is white english but the black midwives were just as dreadful except one lady from Nigeria who saved my life. She admitted me and got the consultant to come and look at me and straight away they said c-section. It was chilling.
I am still so traumatised by these events and I wasn't able to work and did not have a job to go back to. My husband and I did the calculations for nurseries and even at that time it was 50 pounds a day and we just couldnt afford that. I knew that I was going to have to stay at home until my son was at least 5 years old and even then I would have to find a job that would allow me to work around his school hours. It was a lonely 5 years and I literally went crazy as I say by the time he was born I was a nervous wreck and then by the time that he was 2 I thought that billboards were talking to me, that people were shouting at me using telepathy that my husband was out to kill us. But I didnt get to this state for no reason. My mother in law who is a paragon of christian virtue who helps everyone in the community didnt come to see me even though at the time we were living a 15 minute drive from us.
Well she recently told me that she had driven over with her other grand son, my son's cousin who is 6 months older than my son and that I was never home. She was caring for my sister in laws son because my sister in law has suffered from depression for many years and was a single mother. I didnt know this, when she came to house I would have been out with the baby, walking the streets crying in public as my house felt as though it was haunted, I couldnt settle and be at peace when I was alone. I wish today she had phoned me or come to see me at the weekends that she had told me that she'd been to see me, I would have stayed home, she was my life line and she let me down terribly. I can remember asking her for help when my son was 3 months old and was in hospital after having major surgery and she simply said to my husband that she wished us luck but she couldnt come. It may seem that I am asking alot of her but she was the mother figure that I was looking for having lost my own mum when I was 13. My mother in law hadnt been thrilled when my husband and I got married so I thought she was still holding the grudge.
I didn't know about mother and baby groups and my dreams of walking around pushing my pram with my sister in law and her baby were dashed. I never saw them and when the health visitors came over they told me that they had just seen my sister in law and how wonderful my mother in law was. That I would be in good in hands and that was that I never saw them again. They had assumed that my mother in law would come to see me.
I was desperately lonely and still am for years. My mind started to play tricks on me in the house. I would think that the baby was ill because he had blocked tear ducts and had had two operations by the time he was 3 months old. I would keep taking him to a and e and I wasnt sleeping.
At that time my husband wasnt very supportive. He only took a day off work and didnt take the paternity leave because it wasnt paid. I really needed him then and this sowed seeds of psychosis. I began to imagine that he wanted to harm us. Its true that he didnt bond with my son straight away until he was about 2 years old and more able to talk and run and kick a ball.
After a year of not seeing my mother in law at all I begged my husband for us to move hoping that that would take away the crushing isolation of my days. My son was nearly 1 years old and bonnie looking cherub but I was not myself. My dad had a stroke and came to live with us. I felt trapped and tormented I was going crazy.
I got us to move again and this time we got a mortgage for a perfect apartment, I began to heal here and started a home bakery business. My mother in law and sister in law started to come and see us more and I was starting to get better but by the time that my son turned 2 my husband would tell me the devastating news that he couldnt afford the mortgage we were going to have to sell up.
That move was the trigger to the full blown psychosis we moved just a ten minute drive away but an hours walk when you dont drive. My dad was going to pieces he was now disabled and dependent on me, he didnt want me to leave the house and I lived on a second floor of flats. we had to get him down the stairs on his bottom pushing him down a step at a time. Then I would have to push him in the wheel chair and get my son to walk miles to our nearest shop.
I finally succumbed to psychosis sure that my husband was planning to kill me and that my house was bugged and that people were watching me through my tv. I was finally given a health visitor who recognised the psychosis and referred me to a respite house for a few days. This didnt work and when I came back home I was still acting strangely they took me into a mixed hospital ward.
I have never been the same since. My long lonely days of not seeing other mums when my son was little. Trying to reach out but because of my colour I think they didnt want to be friends. Going to mums and toddlers and coming home alone.
Hi Kat, I'm just about to start work. I work part time in a clothing store...I hate my Job and due to the damage that the meds have done to my brain and health I can't work full time in an office as I used to do. I have terrible insomnia and a kind of paralysis for a few hours every morning. I feel pretty horrendous alot of the time. I'll reply properly to your message soon. Thanks for taking the time to write back. Jo
Hi JosephineFay,
Thank you for asking this question. I think highlighting and challenging discrimination and inequality of any kind is really important. I'm so sorry you feel you've been treated differently by mental health services due to the colour of your skin 
We've not published any formal research into the experiences of women from BAME communities who have had PP but we have been involved in some research studies that are currently being written up. We will hopefully have a summary of the research soon that we can share.
We know inequalities exist and that there can be barriers to care for various reasons. We are trying to reach more people who perhaps face such barriers through our Diverse Communities project. We have a café group specifically for Muslim women and are planning to set up a group for Black women later this year. If anyone would like to reach out to us on this topic, to share their stories and/or be kept informed about this project, please do email us at app@app-network.org
Best wishes,
Jenny
Dear Jenny,
Yes I was involved in some research advertised by APP into black mums who had gotten PPP. The researcher told me that my story was a particularly bad case of failings as the other mums she spike to all recovered and most I think had their mental health issues picked up early. I lingered for two years with depression before becoming psychotic when my son turned 2.
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