How things have improved since I had PP - Action on Postpar...

Action on Postpartum Psychosis
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How things have improved since I had PP

guinea1
guinea1
11 Replies

As part of my recovery of PTSD Just been chatting to someone from the perinatal team in Exeter, to tell them my story and to hear about how much things have changed over the last 20 plus years. It is so lovely to hear that now you get refured to a perinatal straight away with experience staff in this field, unlike I went through with psychiatric hospitals and people who had no understanding of my needs as a new vulnerable mother with PP.. it was so good to hear it from the staff and for me to ask questions and be reassured that things have moved forward and also was able to tell me how they are wanting to improve so that midwives doctors etc have training so they can spot the warning signs, especially for mothers who do suffer out of the blue as I did. The one thing that did come to light is that mothers that have suffered in the past and have been effected by their treatment "back in the day" may never seek help or support suffering for years in silence and I wonder how these people could be encouraged or be made aware that it was and is ok to talk about what happened.

It was really lovely that even though I don't fit into the perinatal help, that they did take the time to talk to me and to be told how strong I have been to seek help, to beable to move forwards, I think I am very lucky to have a very supportive, understanding doctor who is there for me, but have to admit it is me who has had to have the strength, I really hope that others who have experienced what I have be through will be able to move on also and is so good to hear mothers now have all this support, but sadly need move funding to get move MBU but it is a start.

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Jenny_at_APP
Jenny_at_APPAdministrator

Hi guinea1

Thank you so much for posting. It’s great to hear you were able to speak to the perinatal mental health team and hear about the support being offered to women now in your area. It’s important we remember and appreciate how far things have come, though you’re right there is still a way to go to further improve awareness and treatment for all.

I think that’s such an important point, that women who didn’t have the support they needed in the past are likely to need support further along the line to deal with the impact of that. I’m sure the team you spoke with will have really benefited from your insights.

I hope you’re doing ok.

Best wishes,

Jenny x

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guinea1

Thank you, its lovely that this area is ok, but I still need to find out about how things are now in Crawley and horsham as this is where I was sent to a psychiatric hospital, but I still dont think there are any MBU there which is so sad.. I feel helpless to be able to do anything for the mothers there and does eat me up not knowing to a degree, but at least some improvement has happened in Devon though not all mum get in there who need it.

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Teresa_K_S
Teresa_K_SVolunteer

Hi Guinea1,

I share your sentiments that it is so encouraging how things have progressed. I too had PP over 20yr since. To think that progress means someone else may suffer a little less, get better a little quicker and hopefully with an mbu, stay with their little babe and have a safe place they can be a little family when their partner visits, this is all amazing. I say little but all these things make a massive difference.

I hope sharing your story has been healing for you. Im sure the professionals you shared with benefitted greatly from your experience

Take Care

Teresa

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Pikorua
PikoruaVolunteer

Thank you for your lovely reply Guinea1.

Yes, the MBU Exeter has fabulous members of staff with a great passion. The development was a huge project where mums and families were involved to contribute to the interior and exterior design.

I was involved in this project. I was so terribly traumatised not only by the illness in 2010, but the way how I was treated in a mixed Psychiatric gender unit suffering "unreasonable behaviour" for 39 days. My partner and I continued to struggle for many years with PTS and my BP was undiagnosed for another 9 years until I received help via APP and Prof. Ian Jones.

I never fought for legal justice, because the past is too painful and I do not want to waste any energy for that. My priority is with my son and partner...I can not change what had happened, but only change the moment by helping and supporting others and give those ones in need a voice, including their loved ones. I have my limits, but I can share my lived experience and lived skills, which maybe of therapeutic essence for mums to cope better.

x

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guinea1
guinea1
in reply to Pikorua

I hope one day there will be some thing like this for mums in Sussex where I was.. it is heartbreaking to thing that others still can suffer, but this is great and to think mothers help with the design is fantastic.

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Mamma6

Hi Guinea1,

Thankyou for sharing your story.

I totally agree with you.

In 1990, when I had PP, things were, as you say, very different. I was given no end of medications including lithium after being admitted to an asylum type of psychiatrist hospital, away from my baby daughter.It too was mixed gender, and my memories of that time are still with me. I’m so pleased you have an understanding doctor, that’s marvellous. My doctor tends to dismiss my emotional pain.

It took 7 years from the birth of my daughter and having PP for me to be diagnosed with Schizoaffective Disorder. In that time, I was in and out of psychiatric units.I believe that because my PP wasn’t treated properly, it then turned into what I have now.

It was hell.

It is brilliant that there is so much care for mothers with PP now, even though there is still a great need for more MBUs.

My heart goes out to you. You are very strong.

Big hugs

Mamma6

Xx

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guinea1

I got over the PP quickly but as there wasn't any support and help back then had kept everything locked away until I had a break down 20 yrs later and now have PTSD because of the treatment so it is so important for mum to beable to talk, I hope other mums who suffered like I did and are still having problems find the help they need so it isn't locked away. It pains me to thing mothers are seperated from families or babies as you need family for support and if it is miles away that is aweful

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Pikorua
PikoruaVolunteer

Dear Mamma6 and guinea1,

I can relate to the both of you so much. All I can say we are true survivors and our strengths comes from within.

Even though your lived experience of this traumatising illness has been 20 years ago or more, the lack and/or inappropriate care created long term suffering.

This has been in my case, too...only 9 yrs ago in a psychiatric hospital. I am often saddened by the known injustice such as physical abuse and negligence due to lack of inexperience or misdiagnosis of health professional.

I am happy and pleased that I know my diagnosis of BP and that I have had most of my support for recovery via APP. My gratitude is endless and I feel so "blessed" to be amongst mums, who can share great compassion. :-)

Wishing you peace, ladies.

x

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guinea1

I'm not sure I am a survivor, as all what I put behind me came back with vengeance when the PTSD came out 18 months ago. I had been totally well until then, my gp said it had to come out sometime.. it is pretty tough, thankfully less mother suffer like we did now adays, but is so important for our stories to be told to prove how important it is for MBU for mothers who do suffer this devastating illness. I have helped with the research for the Cardiff university last week and that has made me feel like I can help make things better for the future.

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Pikorua
PikoruaVolunteer

Well done guinea1 for volunteering in a research programme.

I am with Worcester University, where I do a tracking programme for mood research, specifically for those ones who have BP.

I absolutely agree that mums who have had not the appropriate treatment should not be swept under,-stories should not be forgotten. We are statistics, which are not publicised...within the political arena.

I am a survivor of PPP, I was used by the head of hospital for research purpose and at the time diagnosed with a personality disorder, even though I had acute PPP. I was so poorly and kept mostly in isolation in the mixed gender psychiatric hospital...

Thanks to my partner and a light bulb moment of mine we managed to get out and I was not sectioned again (2 to 3)...

You have inner strengths. Wishing you inner peace...it is good to talk...

x

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guinea1
guinea1
in reply to Pikorua

I am so sorry you have suffered, but weirdly gives me comfort as I feel the same, our stories need to be counted, so noone ever has to suffer, because we are at our most vulnerable and then to be treated with out respect and dignity is wrong, but still we hear mothers suffering, so when we are feeling strong enough, especially how the wrong treatment is inappropriate and can cause suffering later on in life if we haven't come to terms with things....I am still struggling to trust with doctors only really trusting my own one, plus recently one other, which makes things difficult, but as my doctor says we are taking small steps and to feel good when I achieve positive things, main thing is I am moving forward and one day hopefully I will have peace x

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