We need to improve perinatal mental health support.
With mental ill health remaining a taboo subject, experiencing mental ill health carrying a stigma, and mental ill health constantly misunderstood this all mental health services suffer from chronic underfunding and insufficient investment in terms of dedicated resources.
Perinatal mental health is too often at the bottom of the pile.
When we talk about perinatal mental health, we mean relating to pregnancy and the first couple of years after birth. Pregnancy and birth may exacerbate the symptoms of women with existing mental ill health issues, and women with no prior mental ill health problems can be affected too.
Mental ill health in general does not discriminate; it can affect anyone. Mental illness often holds no mercy. Like many illnesses recovery is possible, but with a lack of understanding and support services, the journey towards recovery – and even surviving day-to-day life – can be made very challenging indeed.
Coping with mental ill health while pregnant and/or as a new mum can make this even worse: caring for your baby, adjusting to life with a mini-human who depends on you utterly, unrealistic societal expectations of being supermum and having everything under control will be hard enough but add to that living with a mind in turmoil…if you have even a tiny amount of compassion and empathy you will realise why these families need better support to survive, and to thrive.
Perinatal mental health is a subject I have been passionate about since Hugo died, because of the difficulties I have had. As part of Hugo’s Legacy, I have been doing all I can to raise awareness of the need for better support for bereaved parents in particular, but for all affected by perinatal mental ill health.
I was privileged to be invited by Dr Raja Gangopahdhyay, a consultant obstetrician with a special interest in perinatal mental health to attend a debate at the House of Lords chaired by The Baroness of Shaws Helena Kennedy QC.The event included a reading by Sanchita Islam from her book Schizophrenics Can Be Good Mothers Too – very honest and raw.
Being completely honest, despite my pleasure at being invited my emotions have been so up and down I was uncertain whether I would attend. But attend I did – ultimately I knew I would have been incredibly disappointed with myself for missing such an opportunity.
Arriving at the House of Lords, going through security so rigorous it makes airports seem laid-back, and being escorted through the maze of hallowed halls felt rather surreal. The architecture is stunning, and the artwork adorning the walls (many featuring Tudor scenes, one this history buff’s favourite periods). I was longing to take photos but it is not allowed, and the presence of armed police officers were an effective way of ensuring I did as I was told.
My tumultous emotions meant I wasn’t sure whether I would offer my story, but again knowing I would be cross with myself for missing such an opportunity I put up my hand and was selected to speak. I held in mind a favourite quote:
Speak the truth, even if your voice shakes.
I told the room about my pregnancy, cut so traumatically short at 24 weeks because of HELLP syndrome (coincidentally, today is two years to the day of his expected due date).
I explained that the lives of me and my unborn baby were threatened; of the confusion of waking up in intensive care after the Caesarean under general anaesthetic.
I uttered the words I so hate: that Hugo sadly died at the age of 35 days because he was too small, and premature.
I described how after returning home (we had been in a specialist hospital two hours away from home) we felt cast adrift. Having to find our own way in a world that had fallen apart.
I told of the many phone calls I had to make to various agencies, of the number of times I had to explain my long and complicated story (that I didn’t completely understand myself) to kind strangers, none of whom were able to help me.
I spoke of the frustration of being under the care of secondary mental health services who told me that as I hadn’t planned my own suicide I was not a priority for them, but the local wellbeing service wouldn’t see me either because I was with secondary mental health. Not ill enough for one service, but too ill for another.
I recounted the sorry tale of the consultant psychiatrist who told me that “God will give me another baby.”
I told another sorry tale, of the consultant gynaecologist who knew I had experienced the death of my baby, who lacked any sort of compassion, who treated me like another patient on the production line and who blamed the poor appointment on my lack of engagement (with an implication that it was my fault because I am a nutcase).
I described how it took a breakdown, when I had finally run out of steam, to get me on the road to getting the care that I needed. A telephone assessment with a kind, compassionate woman who was able to make a diagnosis of post-traumatic stress disorder and name me as a priority as perinatal (the lack of a baby had confused other services).
I illustrated how my battles to get support meant some very dark times that sometimes had me feeling like I had had enough, that my poorly head would finish off what HELLP syndrome had started. I explained that these same battles had led me to creating for myself some coping strategies that mean I am still here, but that I know are unhelpful for the longer term.
I observed how others in the debate had made the excellent point about the lack of health visitor support, but there needs to be consideration for mothers who do not take their baby home: they do not see a health visitor, and are therefore excluded from so much the postnatal system.
To conclude, I said that simple kindness, empathy and compassion can make the world of difference.
The other attendees were fully engaged with my account of my experiences: there were gasps of sorrow and of horror at the relevant moments. When I had finished speaking, the room gave me a round of applause which made me feel incredibly touched and proud.
My Hugo is continuing to have an impact on the world!
Points raised by other attendees that stick in my mind are that:
- Awareness of the signs and symptoms postnatal mental ill health, and what action to take to protect mum and baby can be poor even on a postnatal hospital ward. The tragic case of Charlotte Bevan and her baby daughter (Charlotte had a long history of mental ill health, but no care plan was in place and received conflicting advice about stopping her medication to breastfeed) exemplify this shortcoming.
- Women in Mother and Baby Units are too often faced with the additional stress of a court case and the threat of their baby being permanently removed from them. As I understand it, local authorities face the pressure of deciding a baby or child’s future within a 26 week period. This time period was implemented to prevent children languishing in indefinite limbo. While it is designed to protect children from harmful parents and other situations, the system fails to take in to account that a mother in an MBU is ill. She needs support and time to recover so she and her baby can return home to live full lives like so many survivors do. Such a threat is hardly conducive to that aim.
The event gave me the opportunity to meet inspirational people – some of whom I have met, others who I know online but have never met in person but all have become friends through common purpose and being fantastic people. I am always reluctant to list names for fear of omitting someone, but you know who you are!
To echo a point raised during the debate, we have had lots of talk about improving perinatal mental health. We now need action.
Nobody’s Patient, the new #MatExp project is a positive move forward to getting the families who ‘fall between the cracks’ the care and support they deserve.
With last night’s debate at such an esteemed institution and the presence of so many influential people, I am hopeful that actions will finally be forthcoming.