Tuesday 11 March 2014

Everything you always wanted to know about my psychosis, but wereafraid to ask

In a week or two I will be popping along to Rethink's "wrap party" for their wonderful Can You Tell? campaign.  The CYT team basically put on a roadshow, staffed with volunteers like me, telling people about their mental illnesses and asking the public "can you tell" if anything was wrong?  Despite what Asda and the rest wanted us to believe there is no "mental patient" costume.  We are not all blood-stained, axe-wielding zombies in straitjackets.

As the party is a chance to get lots of the Rethink volunteers together in one place, they will also be filming for one of their future campaigns.  I and a few others will talk on camera, answering some questions about our experience of psychosis.  The film will be shown at the National Psychosis Summit on 10 April.

Anyway, as an opportunity to gather my thoughts, here are the six questions they will ask me for the film, and my initial thinking on them:

1. Tell us about when you first became ill and when you first realised you were experiencing psychosis.

My psychosis happened very quickly after the traumatic birth of my son (postpartum or puerperal psychosis).  I was recovering in the High Dependency Unit, with my brand new baby, just a few hours after my husband was sent home to sleep when my grip on reality left me.

At first it was very unclear what was happening to me - as I was presenting as catatonic the doctors first had to rule out a massive stroke.

To me, this psychotic episode was very real and very frightening.  I was in the ward, but I was convinced that my stomach was about to explode and my heart to stop.  I "saw" the midwives don their scrubs in preparation for the body, and I "heard" them whispering that I was just about to die, and getting increasingly annoyed that I wasn't already dead, and I was inconveniencing the other patients.

I also had what I can only describe as an "out of body" or "near death" experience, involving a bright white light.  Who knows what that could've been, but to me I feel like I saw a little bit over the Other Side.

2. What has been your most positive experience of care?

I was treated very quickly by the maternal mental health team attached to the hospital.  Once a physical cause was ruled out, I was seen very quickly by a perinatal psychiatrist who could diagnose PP almost immediately.  Many women are not so fortunate, as their symptoms don't present so quickly after birth.

Eventually my baby and I were admitted to a specialist Mother and Baby Unit (MBU), under the care of psychiatrists, mental health nurses, nursery nurses, occupational therapists and child psychologists.  The care made available to me and my baby over our 3 months as inpatients was incredible.  The approach was gentle, gradual and encouraging.  Human.  Once the worst of the psychosis was over I was able to do more and more of my baby's care.  We were discharged home only once I was confident in my abilities and my family were confident I had recovered.

3. For you, what was the worst aspect of your care?

This is a tricky question as I really don't blame anyone here.  It is only with the benefit of hindsight that I know what should have happened differently. 

For example, I strongly believe I should never never never have been discharged home from the labour ward a few days after my first psychotic episode.  My family (and I!) were desperate for me and the baby to come home.  We all thought the episode was a one-off, and that I would get much better with some rest at home, and family support.  It turned out, however, that the psychosis was only going to get worse and worse.  My poor family were completely and utterly ill-equipped to help.  So just two nights later we were back at the hospital, only this time A&E.

We "got away with it".  But if anything terrible was going to happen, it would've happened during those wretched 2 days at home.

My family had the best of intentions and, with so many doctors in their midst, were able to convince the discharging team to allow me home.  But I would say now that no mother who presented with the symptoms and behaviours I had shown (however briefly at first) should be discharged home.  Instead they should be offered an MBU bed, immediately upon leaving the maternity wing.

4. What do you most want from your mental health care? 

From now, I just want to know that if I ever have another child - or if I ever have another psychotic episode or severe bipolar symptoms - I will be referred quickly to a specialist psychiatrist.  I want to be confident that my GP knows who to refer me to, and that suitable referral services exist in the first place.  GPs cannot refer if commissioners don't commission!

I would also like to be confident that there is enough local mental health team coverage, in terms of nurses and carers.

5. What change, or changes, would make this happen?

In short, more money must be made available for mental health services.  Government must start "walking the walk" of their slogans such as "parity of esteem" - or their words are completely meaningless.  

Commissioners must be given clear guidelines, to end the current postcode lottery of vital services such as MBUs. The benefits of investment in mental health services must be quantified and explained.  The risks of not investing in mental health must also be spelled out.

My three months of inpatient care would have cost my health authority a lot of money, that is certain.  However it is not just my life they were saving (and a potential 20+ years of future economic activity). They were also saving my son.  His life, with all its potential, is beyond value. 

6. Can you sum up your perfect mental health system in one word?  

PSI Maternal Mental Health Awareness Month Blog Hop
- See more at: http://birthtouch.com/2014/04/link-up-2014-psi-blog-hop/#sthash.HWvBBpLf.dpuf


  1. This is a fantastic post. Thank you for sharing this. The fact that you were discharged so soon and ended up having to go back into hospital so quickly must have been so terrifying for you and your family!

  2. Thanks so much for reading! Yes, lots of lessons to be learned - though to be honest after a week on such a busy postnatal ward we were just desperate to get home!

  3. Thank you for sharing....A very interesting post!!
    Good luck with the filming x

  4. What an amazing post. You have really been through the mill and have shared your feelings and thoughts bravely on your blog - which is going to be so important to someone else out there and help them. All the best with the filming. Thank you for linking to PoCoLo x

  5. What a petrifying experience for you. I am so pleased you have written about it though, I am sure it will prove so valuable for countless others...

  6. Thanks very much for reading, ladies. I really hope I might be able to help other families going through similar situations... Xxx

  7. What a fantastic lady you are I hope you are very proud of yourself. Psychosis is terrifying. And I totally agree the Government must start "walking the walk" of their slogans, I am part of my own local mental health volunteer team as a service user and like you am passionate about making positive changes x You will be helping so many others x

  8. I have nursed ladies with post partnum psychosis. It must have been so frightening for you. Thanks for sharing and giving us an insight into this illness.

  9. You have really thought through with these answers, they are constructive, candid and pure honesty. Everything we need to bring awareness and change to mental health. So happy to have found you though the mental health weekly.

    ~ K

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