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?