A couple of months ago I put together a survey for women on my private Facebook group regarding their experiences of perinatal mental health support. This was never supposed to be a rigorous analysis of the issue, but I wanted to pull together a lot of the stories I was seeing on the group in terms of different mental health issues and the support available.
If this is a subject that interests you I would recommend Rachel Ellie Gardner’s work with Forging Families, a summary of which is provided by this infographic:
Membership of my group is just under 1,700 although I would say active members probably number around 500. Of those, 72 women responded to the survey, having self selected on the basis of having something to say about the subject. So I would anticipate the vast majority, if not all of the respondents, having had a mental health issue whilst pregnant and/or postnatally. The respondents are from all over the UK, and all have given birth within the last 7 years.
Having asked about their geographical area and age of their children, I asked about potential additional stressers that had affected their maternity experience:
I then asked about mental health conditions that they had experienced since having children.
I can then break down those two questions to show which conditions women identified as having after having experienced specific circumstances. So for example, women who have had premature babies identify as having experienced mental health conditions as follows:
It is important to recognise that not all respondents who identify as having experienced a mental health issue have had a formal diagnosis of such, and there will be a number of reasons for that. Formal diagnoses amongst respondents were as follows:
Amongst those who have had a diagnosis, the vast majority were diagnosed by their GP.
I asked about the treatment and support women had been offered, and the results of that question are obviously of more interest if broken down into those who have or have not had a formal diagnosis. So, of those women who have had a formal diagnosis, the treatment and support offered has been:
DIAGNOSED OBSESSIVE COMPULSIVE DISORDER
DIAGNOSED POST PARTUM PSYCHOSIS
DIAGNOSED POST TRAUMATIC STRESS DISORDER
All respondents were asked how helpful they had found the treatment or support offered to them:
I then asked a couple of questions about support specifically from health visitors:
And I was also interested in to what other services women had been signposted:
So from where else are women accessing support? Well not surprisingly a lot of these women report finding support online, as they are of course all members of a social media forum.
Respondents were invited to make general comments about provision of mental health services, and nearly half of respondents (35) chose to do so. Whilst I am not able to quote directly from the comments made I can identify certain themes in what the women were all saying:
- Please talk about mental health issues more, both in wider society to reduce stigma, and specifically antenatally to better prepare people
- More awareness in antenatal education about emotional wellbeing and what signs new mums should look out for in themselves and their friends, particularly with first baby
- There is a lot of focus on postnatal depression, but other conditions need to be talked about antenatally as well
- A healthy baby is not all that matters
- More access to therapies required, not just medications
- Using the telephone is difficult for those with mental health problems, text or email contact with services would be appreciated
- Waiting lists for therapies for perinatal women vary widely around the country
- The trauma of having a child on NICU/SCBU and undergoing procedures needs to be recognised – there is a lack of services and awareness of that, particularly after discharge
- There is a lack of services for bereaved parents, or a lack of signposting to existing services
- Services don’t work together
- Support and care is inconsistent – a change of diagnosis for one mum has meant a marked drop in services
- Much worry centres around being judged, feeling ashamed, being seen as a “bad mum”; stigma felt particularly keenly by young mothers; fear of being judged by professionals such as health visitors
- Women are afraid to admit what is happening to them as what happens next is out of their control
- More breastfeeding support would be appreciated
- More consistent involvement is required from health visitors to more easily identify problems
This is not a robust enough survey to produce a usable data set, but it does provide a snapshot that confirms the picture I felt was coming out of the group. A huge amount of anxiety, ranging from everyday worries to Generalised Anxiety Disorder – anxiety seems to be a constant companion of most new mothers, along with “The Guilt”. Women not reaching out to health visitors as much as we would hope, but also there are not enough services available for professionals to signpost to when women DO reach out. Homestart not being publicised enough, Doula care not being publicised enough.
Mothers are desperate for empathic emotional support, as well as specialist therapies and medications. Yet they are reluctant to be open and honest with their health visitors as they are so anxious about being judged to be incapable of caring for their children. There is work to be done here by the health visiting profession in making clear how they can help and what will happen if a mother admits to mental health concerns. There is also work to be done on seeing the person rather than the answers to a questionnaire. Kat Grant has something to say about this in her presentation on her experience of post partum psychosis. Women report lying on mental health questionnaires but being in clear distress during visits and being signed off on the basis of their answers with no recognition of their behaviour.
Those mothers who have turned to their health visitors for support do report some positive outcomes, including HVs coming round for “listening appointments” in the period until a referral to mental health support resulted in an appointment. Yet there seems to be such variation in services. Some bereaved mothers were seen regularly by their health visitors, others were not contacted at all. Some mothers struggling with their mental health broke down in tears in front of their health visitor and got immediate support, others were still essentially ignored. But again, a lot of mothers simply do not feel comfortable admitting how much they are struggling to a health visitor who is, essentially, a stranger.
A small number of respondents had received support or sought support from voluntary (or non-NHS) organisations, and of those the most common sources of support were Bliss, The Samaritans, Anxiety UK and PND&Me.
There are concerning comments in a lot of the responses about the way professionals sometimes handle issues of mental health, or the way that families struggling with very difficult circumstances are often not supported in the way that we would expect. But there is a responsibility on all of us here as well. It is not for the professionals to remove the stigma attached to mental health problems, that is for all of us as a society to manage. It is not only for local services to wrap a family in love after the death or serious illness of a child – that is the responsibility of all of us as family, friends and neighbours. In the conversations we have with each other about pregnancy, birth and parenting we need to be mindful of the messages we are circulating and perpetuating, and think about what those messages could mean to a distressed new mother who does not realise that the way she is feeling is all too common.
Look after yourselves everybody. And look after each other. Starting a family, extending your family or facing illness with your family is an incredibly difficult time. It is also a part of life. The more we embrace life, and discuss life, with all of its realities and messy bits, the more we will feel able to reach out to each other and live life together, warts and all. The life you think everyone else is living is actually a fabricated life you have seen put together by soap operas and magazines. The life everyone else is actually living is one that you know well. It is very similar to yours.