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If you could've been screened for you... - Action on Postpar...
If you could've been screened for your risk of PP as part of routine antenatal testing, would you have taken it?
19 Replies
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andrea_at_appVolunteerAPP
Hi Talk2LMH,
Most definitely yes for me! Forewarned is forearmed as they say. I really wish I'd had the chance to have found out about it first so I could make informed choices or to have heard of PP at the very least! It would have greatly decreased the shock & impact being diagnosed completely out of the blue with a very scary sounding illness at a time when you're still recovering from childbirth.
I think its very early days with this research & it does seem a very small number of women - only 200 which means only 20ish will have developed postpartum depression (& probably none PP). Its vital we understand more about PND & PP & how to better predict & treat them but this seems too early a stage to know whether it will actually help women & I do hope it's not raising women's hopes falsely. I really hope they make progress quickly though, along with improving the other important areas too.
in reply to andrea_at_app
Forewarned is definitely forearmed and knowledge is power! I do hope the NSPCC 'All Babies Count: Spotlight on Perinatal Mental Health' link:nspcc.org.uk/Inform/resourc... does make a difference re education of all perinatal mental health to parents to be and to the medical professions involved in antenatal/post natal care regardless of whether this screening does make progress to be rolled out.
I totally agree re not having heard of PP until I suffered from it, I asked the midwife that took our antenatal class why it wasn't covered in our course and said she doesn't want to scare people, but there's nothing more scary than suffering not having heard of it and feeling so alone!
Yes too true! Pregnant women aren't scared hearing about Downs Syndrome so why would they be scared hearing about PP?
Surely they'd think something along the lines of, "Oh that's terrible but it's OK because it won't happen to me". Which isn't great either (as around half have it out of the blue) but at least they would have registered there's an illness like this & most importantly that's it's known to professionals & help is out there!
Hi Talk2LMH,
I just would like to add to Andrea's response and say that this was a very small sample of women that was tested for this research and from what we at APP know from years of genetic studies is that the sample sizes of women need to be much larger to be absolutely sure of the findings. Let's hope they are on the right lines though and that this can become a marker for the onset of PND.
Unfortunately for PP, the task is much harder, as only 1-2 in 1000 women experience the illness each year in the UK. We have around 600 women on our research panel at APP and would like many more - so please all sign up to our research programme if you are not yet on it!
The more women we have involved the sooner we will find the answer to why PP occurs.
in reply to Nic_at_APP
I'd love to sign up to your research panel to help, how do I go about this?
Hi Nic,
Years and years ago when I met Dr Jones and his team I had a blood test, as did my sister, to find out if she had a different gene to me as she did not suffer PP following the births of her two children. Is this the same research? I would be happy to sign up to APP's research programmme to help other young mums in the future.
I do worry that this awful life changing condition could affect my grandaughters in the future although they are very tiny tots at the moment. I would hate that they had to carry the burden of mental illness and the stigma that goes with it in their lives.
I think I would have agreed to be screened for my risk of PP but pitfalls of pregnancy and post natal problems were never mentioned in ante-natal classes, firstly in the 70's and then mid 80's....... all was going to be well without the mind blowing experiences that followed!
Hannah_at_APPAdministrator
Hi TalktoLMH, the article is quite interesting but it does seem to need further work with more women. Without belittling at at all, as a non-expert and what I was told when I had PP, it's quite different from PND. Aside from being rarer, it can affect people differntly. I'd like to see some more research that's more specific to PP to be honest. But from an awareness raising point of view, the media coverage is good. I think anyone affected by postnatal illness would welcome more info in pregnancy and less of a stigma. Acceptance and understanding of mental illness generally has a long way to go in my opinion. Medical science is always advancing so let's hope it's not long before some more good news in this area. Thanks for the link.
in reply to Hannah_at_APP
In my opinion I think a person's experience of PP is as unique to them as their fingerprint even though there are commonalities. I agree re specific PP research would be great but anything that can raise the profile of perinatal mental health that affects 1 in 10 people is good.
HelenMWVolunteer
Very interesting indeed. I think I would have chosen to be screened. With my subsequent pregnancies I followed an eating plan and had progesterone injections immediately having given birth so that would seem to tie up with the idea of women not being able to balance their homones after delivery. I also had a support plan ready just in case PP struck again. Thanks for posting. Helen
in reply to HelenMW
Thanks for sharing re progesterone injections, this is something I hadn't heard of and if I was considering another pregnancy I'd definitely want to look into further. Good to hear you enjoyed subsequent pregnancies free of PP.
Hi there, just to say this 'regime' was pioneered by Dr Katherina Dalton, I believe she has now died but someone must be following up on her work. She has published books.
Thank you for posting. It is an interesting question as I think the major of individuals would be open to testing after having experienced it. Not so sure if all mothers would be open to testing. In my opinion, at least in my case, a screening primarily focused on PPD would not have picked up my early onset symptoms before the full-blown postpartum psychosis struck. If a screening would have been done at my 6 week postpartum check-up, I do not believe I would have screened positive.
I, personally, believe screening for postpartum psychosis is much more challenging that screening for PPD. I agree that more research needs to be done as to causes of PP before effective screening could be developed and used. I do know of a professional here in the USA that is beginning research on developing a screening tool for PP so if anyone is interested in participating, please let me know. I would be happy to direct you to her.
As for the APP Network's research, I am willing and able to participate in any PP research that I can so let me know how I can help.
~Jennifer~
I'm also unsure whether all mothers would currently be open to testing based on the information in the public domain. I'm hoping the NSPCC 'All Babies Count: Spotlight on Perinatal Mental Health' link:nspcc.org.uk/Inform/resourc... will make a difference in this area. If my expectation had been set that I had a 1 in 10 chance of having a perinatal mental health issue and that PP is as common as Downs which I was screened for I would've jumped at the chance for testing.
I read the screening was down to genetic markers and so it wouldn't matter when the test was done the results would be the same as to whether your risk was increased or not.
Happy to help where I can with research, would it matter if I'm UK based?
Yes, definitely. I live in Australia and they screened for PND. Because I was too "up" for it, they just decided I was fine and didn't think to look beyond for PPP despite the fact that I was running on overdrive, talking a mile a minute at tangents, relentlessly cleaning and not sleeping at all, several days after the birth.
For me the lack of screening was a definite lost opportunity. I'm upset that the strong focus on PND meant no attention was paid to the risk of PPP, by a mental health nurse, several doctors and the head of my emergency department even when I self admitted with mania a few hours before I developed psychosis.
in reply to orac
It's so wrong that people aren't educated about PPP, if they were and it was taught in antenatal classes so much more could be done to treat people correctly and quicker.
I didn't realise anything was wrong with me, I thought I just needed to sleep in my own bed after a week's insomnia in hospital following an EMC and to eat my own healthy home cooking and to get my baby out of neonatal care to restore how I was feeling. Even when the psychosis came I thought I'd just had a nightmare that I hadn't woken from properly rather than a hallucination. Luckily a friend was with me and called an ambulance. Unfortunately I was sectioned and separated from my baby for almost a month. If only the midwives who were looking after me knew of the symptoms of PPP they could've diagnosed and got me treated before it got to that stage.
100% yes
andrea_at_appVolunteerAPP
Hi all,
Here are details copied from the APP website if you're interested in participating in the research. For this study I guess you'd need to be UK based but I might be wrong & it's probably worth sending an email anyway. The research pages on the website are due to be updated but all the latest research info is in the 2012 magazine: app-network.org/wp-content/...
Also, make sure you've joined the APP network, it's free & you'll be kept up to date with everything: app-network.org/about-us/jo...
Many thanks all, it's really great that you'd like to take part!
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If you have experienced PP and have not yet taken part in this study, we would be delighted to hear from you. This study aims to look at how genes and other factors (such as stressful life events) interact and make some people more likely than others to experience mood disorders. It is hoped that our research will improve diagnosis and help researchers develop better treatments in the future.
The study involves:
Taking part in an interview. We usually visit you in your own home and spend about one hour asking about your experiences and the kinds of symptoms you have had in the past
Filling in some questionnaires
Giving a small blood sample
For more information about the study see the Bipolar Disorder Research Network website: bdrn.org/
To request further information or take part, contact:
email: moodresearch@contacts.bham.ac.uk
or telephone Katherine or Beth on 01213 012 361
