Perinatal Mental Health Services versus Community Mental Health Services: A reflection on my experiences.
I have seen several tweets and blogs recently from people who have experienced poor (and in many cases - abusive) care from community mental health services, both from outpatient services and inpatient services. This has made me reflect on my own experiences, and to realise just how different my experiences of mental health care have been, when comparing the different services I have been under the care of.
When I compare my treatment from community mental health services with that of perinatal mental health services, I have come to realise that the care I received from perinatal services has been of such a high standard, that it puts my local CMHT (Community Mental Health Team) to shame, despite both services coming from the same Mental Health Trust. Why is that?
I was under the care of the CMHT for several years prior to my pregnancy and during that time, I received poor care from the very people who were supposed to help and support me. I can recall several experiences of discrimination and stigma from mental health professionals themselves, especially as a result of my diagnosis of Emotionally Unstable Personality Disorder. I saw many psychiatrists throughout my time under the CMHT, and none of them treated me with the respect I deserved. I don’t want to get in to too many details about my care during that time, because that isn’t the purpose of this blog post, but I wanted to highlight how upsetting my experiences were, and how this therefore made me very fearful of perinatal services when I was first referred to them.
I had already been discharged from the CMHT (something I was very relieved and happy about) prior to my referral to perinatal services, so I felt very wary of being “dragged back” in to the system that harmed me. I had very low expectations. I assumed that the psychiatrist would treat me poorly. I assumed that I would be met with stigma and discrimination at every turn, based purely on a diagnosis that was given to me without any explanation of how I met the criteria. I was expecting to be ignored, especially with regards to medication decisions. To be frank, I wasn’t expecting much at all from this team of professionals. I was frightened of them.
I remember when I first met the perinatal psychiatrist. She knew how wary I was of being back under the care of NHS mental health professionals. I remember her reassuring me that the care I would receive would be of a high standard, and I remember her confidently telling me that I would be sad to leave the service when the time came. At that time - pardon my French, but I want to be as frank as possible in this post - I thought she was talking bollocks. She explained that we would do a care plan together and all I could think was, “Oh here we go, another box ticking exercise. Another “plan” that would mean absolutely Jack shit to me.” I was highly sceptical, with good reason.
Now we have come to the part of this blog post where I compare and contrast my experiences of care from the different services - Perinatal Services versus Community Services:
I mentioned the Care Plan that we would write together. My CMHT care plan was always a box ticking exercise, cut in to sub sections, many of which had no relevance to me. It was a very standardised form that failed to take in to account any individual experiences. It was never really designed to do so. There tended to be heavy focus on recovery and how this would be achieved via employment or volunteering, as some kind of final goal to work towards. There was an element of coercion underlying the “plan” as somehow the sentence, “failure to engage with services or treatment offered may result in discharge back to GP” creeped its way in to my plan. The plan always ended with crisis numbers, such as the crisis team number and Samaritans, along with advice to go to A+E should I feel suicidal “out of hours” and unable to keep myself safe.
In contrast, the care plan developed with the perinatal psychiatrist was incredibly different. The main difference has already been neatly explained in that first sentence - “developed with”
It was a joint effort, based on me and my individual needs. We discussed medication options in depth, both for during the pregnancy and afterwards. We discussed what might potentially happen in the post natal period if I were to become unwell. We discussed what medications I would be happy to try and if there were ones that I would absolutely not want. My partner was there during the care planning (which I wanted) and, encouraged by the psychiatrist, we discussed what I would want to happen should I become unwell after the birth. I stated what medication I would prefer to take, and was able to state that under no circumstances would I want to be referred to the crisis team. The care planning wasn’t a simple box ticking exercise. It was done over several appointments, and I felt truly listened to by a psychiatrist for the first time. I was given proper information about medications during pregnancy and breastfeeding. We were also shown around the mother and baby unit, which I found quite helpful. Most of all, my choices were respected. My opinions on my diagnosis were also respected. I was able to state that I did not agree that my personality is disordered and that the diagnosis had directly led to poor treatment from mental health professionals. The psychiatrist did not get defensive in any way (as others have in the past) and they did not dismiss my concerns. They acknowledged the poor treatment I had received years prior to sitting in front of them on that day, and I remember them saying it made them feel sad.
All of the above is in sharp contrast to the standardised care plan made when under the care of the CMHT, which was mostly just a box ticking exercise for the mental health professionals themselves. It meant nothing to me, and probably meant nothing to them... just some paperwork.
I’d also like to take the time to share my experiences of inpatient care on the mother and baby unit. I was very lucky, in that I was able to avoid an inpatient hospital stay whilst under the care of the CMHT. I had several stints with the crisis team and those experiences alone were enough for me to realise that I’d had one hell of a lucky escape. As I said at the beginning of this post, I have seen several tweets and blogs from patients describing the awful care and treatment they have received whilst being inpatient. They are not isolated experiences. So many people have been traumatised as a direct result of the care received whilst in hospital and it has therefore made me reflect on the excellent care I received on the mother and baby unit.
The early days, both leading up to the admission, and whilst on the unit itself, are quite hazy to me still. I know now looking back that I was poorly, but I can remember at the time feeling very paranoid, frightened and confused.
My medication wishes were respected and so the antipsychotic I was already taking was increased. This is something I had asked for in advance when we did my care plan together before I became unwell. I knew that this medication worked well for me, and so I was keen for this to be increased first to see if it would help, rather than me having to change medications altogether. I clearly expressed this in my plan, and instead of ignoring this and doing what they felt was best, (which is often what happened in community mental health services) they respected my wishes.
I started to feel better quite quickly as a result of the dosage increase. I was very lucky. During my time on the ward, I was treated with compassion and kindness. I could tell that the staff genuinely cared about my wellbeing and that was reflected in the excellent care that they provided for both me and my baby, and also my partner. They looked after us all so well.
This is in such sharp contrast to many of the experiences I have read about on social media. I have briefly touched upon my own experiences with the CMHT, but there are SO many more people out there, across the UK, who have had poor experiences of community mental health care. It is definitely not just something isolated to just my mental health trust. People have shared experiences across all services, from outpatient appointments, to contact with crisis teams, right through to inpatient hospital admissions. I have included a few relevant blogs and hashtags below to highlight some of the common themes that come up on Twitter when people discuss their experiences of poor (and in some cases - abusive) care. This list of links is very small. It’s just a drop in the ocean, but I had to start somewhere:
I’ve also included some links from relevant blogs and sites that share other mums stories of their experience of perinatal mental illness and the care received from services. Again, this list is small.
Why have my experiences of mental health care been so different? I was treated with empathy, kindness and compassion by the perinatal mental health team. But why have they been able to do this and the community mental health services (for the most part) weren’t able to? Are my contrasting experiences just a “one off”? Was I just incredibly lucky to receive decent care from this specific perinatal mental health service, yet other perinatal services across the UK are providing poor care? Somehow I doubt it, but I don’t really know.
But focussing specifically on the mental health trust I personally received care from - how can two different services, provided by the same mental health trust, provide such contrasting care - excellent care from the perinatal services versus appalling care overall from community mental health services? I cannot recall a single example of stigma, discrimination or abuse from any mental health professional working for the perinatal mental health service, yet I can recall plenty of examples from the CMHT.
Is this because professionals working in the perinatal team (and the mental health trust as a whole) feel that I am somehow more deserving of care because I have/am going to have, a baby? Is there therefore some kind of hidden layer of stigma within the profession? Does the stench of stigma run so deep that a kind, caring and compassionate nurse working on a mother and baby unit would change in to an unkind, uncaring “bad” nurse overnight, if they switched to working on a general psychiatric inpatient ward?
I don’t claim to have any answers regarding why my care has been so different, but as you can see, I do have a lot of questions that I hope people will reflect on, as I am also doing myself in this blog post.
What I do know, is that the differences in my own care are not due to each service basing their treatment on different “models” of care. Both services within my mental health trust function similarly, with a mostly medical model approach. Yet one service provides excellent care and the other service doesn’t. So this blog is not about bashing the medical model, or singing the praises of so-called “trauma informed care”. This is about human beings treating their patients as fellow human beings, and treating them with empathy and compassion, irrespective of their beliefs regarding different models of care.
For me personally, I do also believe that my past diagnosis of borderline personality disorder played a huge part in why I received poor care from the CMHT. It directly led to discrimination, and staff attitudes within this service were disgraceful. Would the perinatal team have treated me any differently if they believed I had a personality disorder? I honestly don’t know. As a result of being at risk of and then developing post partum psychosis, my diagnosis changed to Bipolar. Does this factor in to the reasons for the excellent care I received? Again, I don’t know, but to be honest I doubt it. I think that I would have still been treated with respect, compassion, kindness and empathy, irrespective of my diagnosis.
But I do know with certainty that my diagnosis absolutely affected how I was treated by the CMHT. That includes when different professionals failed to agree on my diagnosis. Those who viewed me as having a disordered personality, treated me terribly. Yet those who viewed me as having either PTSD or Bipolar, tended to be more open to displaying compassion and kindness towards me.
As I said earlier in this blog post, I don’t really have answers. I can only share and reflect on my own experiences, but I really do feel as though it is important for me to highlight these differences in mental health care, and that is why I decided to write this post.
Everyone deserves access to the high level of care I received from the perinatal mental health team, both as an inpatient and an outpatient. Everyone. Irrespective of which mental health service they are referred to.
Are all mother and baby units in the UK providing a high standard of care? Are all perinatal mental health services full with compassionate staff who genuinely care about their patients? I don’t know. I hope so.
All I do know is that the perinatal team I was under during my pregnancy and post partum illness were absolutely fantastic, whilst the care I received in years previously from the CMHT was dreadful.
Given that the care from both perinatal and community services I received came from the same mental health trust, it does leave me wanting to ask one important question:
Why is there such a difference? Why?
Thank you for reading if you have.
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