Puerpural Psychosis questionaire

[clare1]

Hi


I am a Medical Student at Cardiff University, I am currently doing my final year project with Dr Ian Jones on Postpartum Psychosis. I aiming to produce an information leaflet for the Mother and Baby Unit in Cardiff and the app-network website. The leaflet will cover the treatment of PP focusing on medications; their benefits, risks and side effects.

So that my leaflet is of maximum benefit to future Mothers and their families I would be grateful if you could tell me your views on the following questions.

Did you and your family look for information relating to the treatment of PP during your illness?
Would you have liked to have received information on the risks and benefits of medications?
Are there any questions that you think should be covered in the leaflet?

If you would like to help me you can reply to the thread here or send me an email to dallimorec {at} cardiff.ac.uk

Thank-you


Clare

[HintOfSunshine]

Hi Clare,

For me, the answer to your questions is definitely yes & yes!

Myself & my family all looked for information about PP especially just after being diagnosed. Even a few days after being admitted to hospital, I was so desperate for information I asked a family member to search the internet & print off information about the illness & the medication they put me on. It was so important to get information with PP because the nurses that were looking after me (I was in a labour ward in my local hospital), only had a brief knowledge of PP & couldn't help at all with my many questions! This was very isolating & frustrating at such a confusing time. I saw the specialist each day who answered some of my questions but when you're so ill it's difficult to trust strangers immediately, so further information backing up what I was being told, would've been invaluable.

The lack of useful, relevant, up to date information was incredibly frustrating. It was also quite difficult for everyone who googled PP & came up with all sorts of horror stories. It would've been great to have a leaflet explaining what PP is, that I could show to people & help explain in some way what I had. In the early days, the information I was desperate for was all about the medication. I wanted to know in detail, what I was taking, why, what were the effects to me & what were the effects on my baby if I breast fed.

The breast feeding was a major decision at the time & added so much pressure (as the drugs I was taking had been around long enough to be proved safe)! As I was in a post labour ward, the culture was 'you MUST breast feed your baby' but with hindsight, this was the very last thing I needed to be doing (I just needed sleep) & it just added to an already stressful situation!

I found it VERY confusing in the early days, trying to understand who was who on my care team was & what their roles were, what department they worked for etc. I saw so many strangers & heard so many new terms/phrases it was mind-blowing & the stream of people through my door was overwhelming. I know it's different for everybody but it would've been useful to have an idea what 'crisis team' 'early invervention' etc. meant.

It would've been very useful to have a list of support tips to give the families/parents some guidance (as they're at a total loss too). Practical things such as, help the sufferer get plenty of rest, don't overwhelm them, help with baby/chores as much as possible, help them to get out etc.

Also, obviously links for further support would've been so helpful. I really didn't know where to go & as me or everyone I knew had never even heard of PP, the isolation was unbearable. I wish I could've spoken to someone else who'd been there & come through it but I didn't get that chance until I was better. I know there're far more places around to get help these days, which is fantastic!

Apologies for my rambling thoughts, I keep thinking of things! I hope this helps in some way.
xx

[Bookwormprincess]

Hi Claire,

I've only just seen this and feel it is an invaluable project you are undertaking. Thank you for reaching out and asking sufferers for their input.

My family and I would have truly appreciated an information leaflet on PP. I was too ill whilst psychotic to read or believe anything was real but once I "came round" an easy to read leaflet would have been a godsend. I would have wanted to read a little about medication and the importance of taking it consistently, but mainly a description of what psychosis is and why it can happen in the postpartum period, and also the statistics of occurrence.

I would also like the leaflet to explain about the common incidence of co-morbid depression that can follow a psychotic episode. It took me 3 weeks to be free of the psychosis and 16 months to recover from the numbing depression that followed. In that time I had no hope that I would ever be myself again let alone have a bond and love for my son. I wasn't well enough to go online and seek peer support and my family didn't know where to turn on the internet, as like HOS has said above, a Google of PP just returned horror stories at first glance 3 years ago. In fact my family's main information came from Dr Ian Jones himself via telephone, and it would have been much harder for them whilst I was psychotic if they had not had his reassurances that I would get better. So I think it is vital that such a leaflet gives the patient and family hope that they will get back to the person they were before, albeit one who is now a new Mum. Also to give a real indication of the length of recovery including after the psychotic episode has ended.

I might be inclined to not overload Mum's currently suffering in the very early days or weeks after a diagnosis with too much detail about medication, particularly about risks. This is only based on my own experience of how I believed at one point it was the meds making me ill, although I now understand this is quite common. I probably would have been overly anxious to read any risks. However, understanding what the medications were doing in my brain would have been beneficial and a list of common side effects, particularly huge rapid weight gain and cessation of periods. I did not know I had a choice of antipsychotic and so would have swapped before the weight gain reached 3.5 stone! Knowing their are options would have been good.

As above, links to trusted websites and peer support forums. Tips for family to help the mum. Reassurance that there will be a bond and baby is not likely to be affected in any way. I probably could go on ....

I am bound to think of more points at some point so may email or post again.

[Bookwormprincess]

Also, one other important point to make would be that a psychosis is different for each individual and therefore you will never find one story to describe what it is like for every woman who has had PP, but there are definitely common threads of the illness that will run through each story. When I first went looking for information after 16 months when I was pretty much recovered I expected or wanted to read stories that were just like mine, but every one I read was different. However a lot of the emotions of fear and feeling traumatised were in each one.

The valuable patient information leaflets for any illness will always manage to convey that the impact of the same illness can be different for each individual and family. I'd hate to find a book or leaflet on PP that said "this is what it is like" and after reading come away thinking that it wasn't like that for me.

Hope that makes sense