To complain about post maternity care?

[BitsnBobs]

I had all the signs of psychosis when my midwife came to visit two days after the birth of my son. I told her I was confused, having hallucinations and kept calling my son the wrong name. I hadn’t slept in days due to a long labour. No alarm bells seem to have rung for the possibility of psychosis. My mum even asked if there was mental health support available to me as my birth was very traumatic, and the midwife replied with “there’s a huge waiting list, she’ll be fine after a bit of a sleep” Well, the next day I was taken to A&E and sectioned into an MBU after trying to launch myself out of the window with psychosis. I stayed in the MBU for almost 3 months. I am recovering well, but feel let down by the care I didn’t receive. I can’t decide if to pursue this as a complaint to the maternity services or let it be. Any advice appreciated!

[Jenny_at_APP Partner]

Hello BitsnBobs,

My name’s Jenny, I’m one of the peer support coordinators at APP and experienced PP myself back in 2012.

Thank you for writing here. I’m so sorry you had this experience and am glad you’re recovering well.

I’m sorry that the midwife you saw didn’t pick up or act on the seriousness of the signs you were displaying, especially with you disclosing that you were hallucinating and your mum asking about mental health support. Things can escalate so quickly with PP which is why it should be treated as a medical emergency.

My husband and I sought help the night before I spiralled into acute psychosis. I was talking around in circles, very anxious and confused and very sleep deprived. Ultimately I was sent home with reassurance and advised to have a hot bath and a Horlicks and try to get some sleep. I was back in hospital the next day in a much worse state, and things deteriorated very quickly. I could see how I might have come across as a very sleep deprived and anxious new mum, but it just goes to show how quickly those early symptoms can become something much more serious.

I think it’s very much up to you if you wish to make a formal complaint. I think in your position I would at least want to feed back to the service and make sure there was some learning from your experience. It might help you to process things too, to share your experience with the relevant teams involved and know that there was improved knowledge and awareness of PP as a result.

Contacting the relevant Patient Advice and Liaison Service (PALS) might be a good starting point – they should support you in feeding back to the relevant service and also with making a complaint if you decided to go down that route. Or you could perhaps contact the service directly and ask to at least talk through your experience with them? There is some information about feedback and complaints in the NHS here that I hope is helpful in thinking through your options - england.nhs.uk/contact-us/f...

I completely understand why you feel let down and am very glad that you didn’t come to any harm. We deliver training and provide information and resources to healthcare professionals – if you do decide to approach the team and would like further information from us to help with this, do send me a direct message or email us at [e-mail]

Take really good care and please write here any time.

Best wishes,

Jenny x

[Survivedwithcolor]

I'm very sorry this happened to you. I can certainly relate. When I got PP it was subtle at first, and when I told someone about my fears of aliens in the closets and trying to break into the house they explained it away with something else. They continued to explain it as something else, leading me to believe it was not psychosis, and so I just lived with it for ten months before I became so critical I was taken to the hospital. At that point, it had been so long, the doctors did not believe it could be postpartum psychosis and thought I must have developed another major mental illness out of the blue - even though they all knew I had had a baby that year. Crazy, right?

I attribute this to a lack of education. The person I saw, and I wonder if the person you saw, simply did not take it that seriously, or did not recognize what they were hearing as a warning sign. I feel like health care workers fall on two spectrums: the ones who panic at the littlest thing, and the ones who say it's nothing even though you're extremely distressed. I'm too far out from my experience with PP to talk to those people now, but when I've more recently encountered people with less education in the healthcare system, I'll often write a letter or speak to them afterward in an effort to try to educate them. Some listen, some don't. I don't think of it as a complaint, necessarily, I think of it as an effort to let them know what happened, and how I felt about it.

Something like this happened to me just last year. I had a surgery, got an infection, and passed out at home. I was taken to the hospital by ambulance, but because I did not appear that critical, the doctors overlooked the fact that I had an infection and sent me home again. Worse, they did not contact the surgeon who had operated on me just two weeks earlier to ask them what they'd like to do. So only five hours after going back home, I passed out again, was returned to the ER by ambulance, and by this time I had a raging infection and there was no question about what was wrong. When someone from the surgeon's team came to see me, they were aghast that they hadn't been called for a consultation, because they would have recommended treatment immediately. By that time I was very seriously ill, had to have a second emergency surgery and spent a week in the hospital. I could have died. Afterward I wrote a letter to the hospital administrator and told them what happened. I said that I did not want anyone to be in trouble, but I did want the young doctors who treated me to learn from the experience One of them called me and was very thankful. She owned the fact that they had made a mistake, and we discussed what had happened. I told her that I knew she would be seeing many more patients in her career, and I wanted her to be aware of that mistake and how it affected me. She was very grateful I had made that effort and assured me that she would take that knowledge forward with her. She gave me her personal phone number and told me to call her anytime, which is pretty unusual for a doctor to do. I didn't ever need to call her again, but I knew she was sincere.

I think it's important that we let people know as much as we can about PP. I've met many, many health care professionals and even mental health care workers who are pretty unfamiliar with it. If I were you I would probably tell them about it for that reason. You don't have to be unkind about it, just tell what happened, how you felt, and that you'd like this person to be more aware. If they learn from this mistake, then you've done a good thing.

[WonderWomanUK]

Hi BitsnBobs , so sorry the midwife didn’t pick up on signs and great news you’re recovering well.

I would definitely raise this, it could be a case that as PPP is 1-2 in 1000 the midwife had just never come across it before.

Mine was similar and it was my family that reached out for support rather than my midwife, even bough I saw her a few times due to my emergency c-section scar (was told & my notes said it didn’t have stitches in but it did). My midwife saw me in the mental hospital to check my scar again and a few months later at home to check on me. I think maybe I was her first case of PPP and she wanted to see what she could have done differently? Not sure?

Please raise it, even if it isn’t a complaint, to help prevent other people from experiencing this.

So pleased you’re doing well, all the best to you and your family!

[EquineBeauty]

I would def. raise this with the hospital/service administrators. Even if the midwife hasn’t come across PPP herself - it’s in her job description to educate herself about all the conditions that can affect mothers. She failed you. Miserably. I would be quite angry. You were exhibiting clear signs of psychosis with telling her you have hallucinations and she dismissed you and your mother for necessary immediate mental help. In the USA, this might even be a legal case. I would consider speaking to a lawyer. But I understand if you don’t want to take it that far. I would at least speak to the administration of the hospital or the service that provided that midwife.

A similar thing happened to me at the hospital although I wasn’t in full psychosis yet but on the third day after delivery I started exhibiting very strange symptoms. I wasn’t sleeping at all, was extremely depressed and told the nurses I’m incapable of taking care of my daughter and she should be given up for adoption. (Which is not a rational thing to say as my husband and extended family were perfectly capable of taking care of her). They called in an actual psychiatrist consult - she spoke to me for 15 minutes and said I have post partum depression - and discharged me home! I begged the doctors to give me stronger medications as I knew 25mg Zoloft is nothing and takes 6-8 weeks to start working. They discharged me anyway. 2 days later I became acutely psychotic with violent tendencies and was taken by police to the emergency department. Months later I went to the hospital where I delivered and actually had a meeting with the administrator, a midwife head nurse and the department head of the delivery ward. They listened to my story and were very grateful that I had come in. The administrator gave me her card and they assured me that if I chose to have another child - they would keep me in the hospital for at least 5 days and have more thorough evaluations with mothers in extreme distress (like I was.) I’m glad I did it. I think it could at least prompt them to seek more education on this condition. 1-2 in a 1,000 is really not that rare. Think about the thousands of women that they serve on an annual basis. Education on this disease/complication should be given to every mother upon discharge because it’s so serious and comes on so quick.

[MsBeau]

Hi there.

I’m so sorry to hear of your experience.

I too had a traumatic time seeking help, was sectioned with PP when I took myself to hospital after seeing the GP. I wasn’t treated for my PP though, neither at A&E nor when I eventually got to the MBU. Despite being diagnosed with PP at A&E (and was the reason for being sectioned) the MBU thought I was having a manic episode or it was bipolar. I was only given a sleeping tablet after being kept up most of the night during the transfer to the MBU.

I am a solicitor and have brought a legal claim against the hospital. I don’t feel good doing it but I genuinely feel it’s the only way to make things improve. I’m hearing too often how the obvious signs of PP are being dismissed or overlooked, and I truly want to bring about proper change. The only way to do that, I feel, is by bringing a claim. I have also done many PALS complaints alongside my claim which have helped to ‘flush out’ information which has been useful to identify that I wasn’t given anti-psychotics quickly enough.

I feel that healthcare professionals are unaware of those early signs and what to do if a mother is displaying them. Whilst the mother is still in that early prodromal phase she should surely be given antipsychotics straight away, which you’d think wouldn’t be a huge issue given that they are often taken as a precautionary method during pregnancy. They just don’t seem to be ‘dished out’ freely enough and for me, I was allowed to go on to have a full psychotic break, something which I think could have been avoided if I had been medicated straight away and my sleep had been prioritised.

I will say however, that it has been a long and rather emotionally taxing process and not something to do if you think it could negatively impact your recovery. For me, it has been helpful and somewhat cathartic as the anger I have felt since it all happened has been all consuming. I had to ‘do’ something, and the only thing I knew how to do to properly get someone to stop and listen to my experience, was to bring a legal claim.

Feel free to reach out further to me, or anyone else here, for any support.

Wishing you a speedy recovery xx

[EquineBeauty in reply to MsBeau]

I couldn’t agree more. I too believe that if I was given antipsychotics just a few days before my full on psychotic break - it could have been avoided. I was displaying signs of oncoming psychosis and was just given the lowest dose of an antidepressant and an allergy pill to help with sleep. None of which worked of course. Had I been given antipsychotics I believe I would have started my recovery and never gone into full on psychosis. Glad to hear your made a legal claim. I didn’t quite go that far but I did have a long meeting with the hospital where I delivered.

[MsBeau in reply to EquineBeauty]

I’ve heard that anti-depressants can also speed up a full psychotic break…! I was self medicating at 150mg of sertraline which I think explains a lot of why I became manic. But I was manic for days and days and despite being sectioned FOR having PP, my hospital notes (and my memory of it all, which is clear until I became acutely unwell) has no mention of being given anti-psychotics. I really don’t think the hospitals have a leg to stand on. The only justification I think the MBU may have is that apparently they start from ‘fresh’ and monitor your symptoms from the start. Which clearly indicates I didn’t have ‘frank’ I.e. obvious psychosis when I arrived or they would surely have known straight away what it was…. I think it was so dangerous though not actually reviewing my sectioning papers and the reasons for me being sectioned, it’s as if the GP and a full MHA assessment just went completely to waste…

Sorry to hear of your experience… yet another story to add to my list and will mention when I eventually (hopefully) sit down and mediate with the hospitals. Xx

[EquineBeauty in reply to MsBeau]

Yes, they should def. administer antipsychotics earlier. There is no downside to it really as you said it’s used as a preventative sometimes and also used to treat depression for people who don’t respond to regular antidepressants. I’ve heard of antidepressants pushing someone into a manic episode. I never became manic but I did have psychosis 5 days after birth. Either way there was plenty of warning (at least 3 days) to assess my symptoms and to administer antipsychotics to prevent what happened. I don’t know why they did such a poor job assessing me either.

[MsBeau]

Also just to add, you have three years to bring a claim if that is what you decide to do. You don’t have to issue proceedings in court straight away, a simple letter of claim will suffice, which is what you’re advised to do to comply with the pre-action protocol. I submitted my claim three months after being discharged and am now at the point where both sets of defendants (the hospital and council) have instructed independent experts to analyse the care I was given.. a long old journey but one which I feel should bring about positive change for other women.

I am aware that there is more training taking place at my local hospital, at A&E in particular as a result of my complaints/ claim. And that feels really good to know. Xx

[EquineBeauty in reply to MsBeau]

This is how long-term change and results are made.

[MsBeau in reply to EquineBeauty]

Thanks xx I’m also going to negotiate with them to not sign an NDA, or to agree any publications in advance with them, so I can share important parts of my story. A legal claim, media coverage of what happened to me and anecdotal snipppets of stories of many many other women that I have heard is hopefully going to make someone in govt take notice!

[EquineBeauty in reply to MsBeau]

That would be great. The more attention this gets in the media the better - and not the wrong kind of attention either - those horrific cases where PPP goes untreated on undertreated end in tragedy - and the media sensationalizes these stories and sometimes even makes the mother out to be some horrible person when in reality the person is severely ill - and can be cured. The focus on these stories needs to be that 99% of people fully recover from the condition within a relatively short time frame - but it absolutely needs to be taken seriously and everyone needs to know the symptoms so it can be caught early and treated and therefore everyone can remain safe. So many tragedies can be prevented.

[EquineBeauty in reply to MsBeau]

If you want I can write up brief story of what happened to me in the delivery hospital prior to my discharge and my symptoms and how despite a doctor being called in - they still dismissed it and discharged me. (If you need more anecdotal stories of other women’s experiences.)

Let me know. Will be happy to help.