In 2017 I developed a content plan and wrote 26 articles for Bupa’s new workplace mental health hub. I used to be a workplace ‘health check’ consultant for Time to Change and I enjoyed using my knowledge and experience of the issues involved to create resources that would help organisations make positive change.
All the articles were written to the Information Standard – an NHS kitemark that requires them to be based on the latest evidence and regularly reviewed.
The hub was shortlisted for a Bupa Global Clinical Excellence Award in 2018 and was recently highly commended at the British Medical Association Patient Information Awards.
Last time my work was nominated (and came runner up in two special categories), I was 37 weeks pregnant and didn’t want to risk a trip to London. This time, I was recovering from a missed miscarriage and was again unable to attend. One day I’ll make it – it’s a good opportunity to catch up with old colleagues and meet people doing wonderful and innovative things in the world of patient information.
I recently worked with Hemihelp (now part of Contact) to help them train volunteer moderators for their peer support group on Facebook.
The group was established in 2007 and became more active in 2011. It has over 5,000 members and over 11,000 interactions each month. It seems to be a strong community with a lot of peer support offered (there is little need for moderator input on this front). There is debate among members over the nature of the group and how it should be used.
I offered some advice around consultation with the community to help ensure the guidelines and moderation approach are based on the needs of the group. This can also be a really good way to introduce and embed changes.
Hemihelp planned to recruit volunteer moderators to help them manage the group moderation during office hours. I am usually a little wary about using volunteer moderators especially ones who are still active members of the group but this can depend very much on the community in question.
Initial response to the advert was quite low. This was perhaps understandable given the nature of the group (busy parents from all over the UK, many of whom couldn’t make it to London for training). I recommended that they emphasise the transferable skills volunteers might gain as well as the opportunity to help the community. This helped them recruit a few additional trainees but I think they would need to offer comprehensive online training to really increase their numbers.
I did extensive desk research and conducted a survey of the Miscarriage Associations supporters and stakeholders. In one week we received 1716 responses from people who self-identified as having had mental health problems as a result of their loss or losses.
Report and recommendations
I wrote a detailed report and provided recommendations.
Review of existing guidelines and quality standards showed that mental health support around pregnancy loss is limited and not always followed. Research highlights the association between early pregnancy loss and PTSD symptoms, OCD, depression and anxiety symptoms in particular – although studies are small, difficult to synchronise and limited in scope.
96% of all respondents to the survey reported that they had experienced difficult feelings, emotions or reactions that were caused by or related to their loss or losses in some way. 74% felt alone or isolated, 69% experienced persistent low mood, tearful or unable to find pleasure in things you used to enjoy and 61% felt numb or shut off from other people. 39% of all respondents had existing mental health problems that were made worse by their loss or losses. As well as the statistics we had almost 10,000 individual pieces of qualitative data to read and collate.
I’m writing this to make sense of how I felt yesterday. I’m sharing it because I’m sure I’m not alone. Parenting is really hard and parenting with mental health problems can sometimes be a real struggle.
I became a mum in October 2017. In some ways, it’s made me more resilient. But those dark and anxious thoughts have always found my most vulnerable spot to poke away at – and now that’s my gorgeous, loveable, wakeful, clingy, frustrating, exhausting, friendly, kind, smiley little boy.
Uncertainty, blame, guilt and comparison
When I’m really struggling with my mental health, all those normal parenting concerns are magnified. I lose all perspective. I question everything. I blame myself for his tears and worries. I get frustrated that he rarely wants to get down from my arms and play, when there’s so much I want to explore with him. Then I feel so guilty for wanting him to be even the tiniest bit different. He’ll have enough of that in his lifetime without me doing it too.
I compare myself to others and find myself wanting. I overthink his naps, the amount he breastfeeds, the time he sleeps, the little he eats. I wish I could have his Dad’s strength and calm.
I struggle to find the energy to bounce him through the day. On the very worst days, I hold him with tears in my eyes, unable to see my way through the next ten minutes of parenting tasks, let alone the hours until bedtime. And then I feel pathetic – and guilty that he saw me cry.
My heart feels raw when I think of him. I hurt for the pain he’s bound to feel, for the upsets and the bullies and the difficulties I can’t protect him from. And when my defences are low, I get horrible intrusive images of him falling, or drowning, or burning. Images that send my adrenalin soaring and leave me shaky and tight chested.
Fundamental emotions, twisted and distorted
It doesn’t get to this point too often, thank goodness. Usually, I have more perspective. I’m more resilient, patient and practical. But when I do spiral down, it’s faster and harder than before.
Those fundamental mum emotions of intense love, protectiveness and wanting the best for him get twisted and distorted into guilt, sadness, fear and negativity about myself and my ability to cope. And these emotions are so strong, so deeply fundamental, that their distortions are powerful and destructive too.
Strength and love
The love I feel for Oaklan is incredible. When I’m not with him, I feel as if I’m slightly holding my breath until we are back together (even if I’m also desperate for a break!). These feelings will never fade. I never want them too. Perhaps part of being a parent is accepting that I’ll always be dealing with deeper and stronger emotions than ever before. But I hope that by starting to recognise how they interact with my mental health, I can stop letting the worries and fears take over too easily.
We’re never alone
Almost as soon as I posted on Twitter I got this response from another mum. I knew it wasn’t just me but sometimes it feels very lonely in my head. It’s good to be reminded that we’re not alone.
But this is nothing new. Reports in 2018 said existing guidance leads to misdiagnosis and harmful long-term prescribing. Thousands of people have reported huge difficulties coming off antidepressants. The longer you’ve been on them, the harder it seems to be to come off. Yet many healthcare professionals take a pretty casual approach to these brain altering chemicals.
I have recently licensed my community moderation training package to Cardiff Women’s Aid. As part of this three-year licence, they received an initial training session and feedback on participants practice activities, bespoke training resources and trainer’s notes, a train the trainer Skype session and a draft moderation handbook for their ongoing use. I have also been happy to offer ad hoc suggestions and support around moderation and management as they develop their new online community SHOUT.
SHOUT is for survivors of violence against women in Cardiff and the surrounding areas. The name stands for Surviving through Hope, Openness, Understanding and Trust, with these values as their guiding principles.
I ran the initial training session for seven survivors and the community engagement project worker (who will be running the training in future).
After introductions we covered:
An exploration of the advantages and disadvantages of online support for both moderators and members.
An introduction to community moderation – thinking about what it is, what moderators do and how community members might be involved in moderation too.
Skills for moderation – emotional support and listening online.
Skills for moderation – using language effectively.
Skills for moderation – signposting and awareness of barriers to support.
Using personal experience effectively.
Community guidelines and managing posts and reports.
Looking after yourself while moderating.
Identifying bad practice.
Although we touched on safeguarding and confidentiality, this will be covered in more detail in a further training session run by CWA. In this session, they will also look at the technical side of the community (something that wasn’t finalised at this stage).
I also provided a practice activity that participants could do in their own time for some extra feedback.
It was a great day and the volunteers were all really enthusiastic and engaged. I’m really looking forward to hearing more about how it goes when CWA launch the community in a few weeks.
Clare created fantastic bespoke moderator training and helped us develop our brand-new survivors’ community. She went out of her way to ensure that the training met our needs exactly by engaging in various in-depth discussions and learning about our sector. But beyond that, she also helped us to build our vision for the community and the community guidelines; created an editable handbook for our future use and changing needs as the community grows; and offered ongoing support with tweaking the training as the forum develops.
The training itself was simple to understand but well-rounded and very comprehensive. Our moderators told us they thought the session was very positive, interesting, inclusive and approachable, and that the mix between group discussions and presentation was very helpful.
Clare was great to work with: patient, understanding and thorough. The training she developed and delivered was exactly what we needed. I couldn’t recommend her highly enough.
Venice Fielding – Community Engagement Project Worker – Women’s Aid Cardiff
The WRISK project is a collaboration between the British Pregnancy Advisory Service (bpas) and Heather Trickey at the School of Social Sciences at Cardiff University. They are aiming to draw on women’s experiences to understand and improve the development and communication of risk messages in pregnancy.
They asked me to blog about my experience of taking (and trying to stop) antidepressants before conception, during and after pregnancy. I was happy to oblige. I was given conflicting and simplistic advice from various GPs. They failed to give proper weight to the complexity of my experience and used the concept of risk to make me feel guilty and disempowered. This needs to change and I’m glad to support the WRISK project in trying to do so.
In 2013 I ran a training session for Action on Postpartum Psychosis on giving peer support online as part of their award-winning peer support programme. I’ve been working with them ever since. I’ve done a further five training sessions, including one when heavily pregnant and another four months after Oaklan was born.
Now my maternity leave is over, I’m doing some more long-term projects with them. I’m developing a new Insider Guide ‘Being a Parent after Postpartum Psychosis’. As part of this guide, we hope to create some resources to help parents talk to their children about their experience. We will publish the resources to coincide with the general release of the film Irene’s Ghost (a documentary I have been lucky enough to see already and very much recommend).
In 2015 I did Veganuary. Controlling my food intake and restricting or cutting out certain foods contributed to a return of disordered eating problems. Food and eating – or not eating – took over my thoughts. Despite moving away from a completely vegan diet, I continued to restrict my food and purge through exercise.
We finally got a positive pregnancy test in January 2017. Pregnancy with residual eating problems wasn’t easy but I’ve found that, since Oaklan was born last October, my relationship with my body has changed. It’s hard to pin down exactly why. I think it’s felt more powerful and more important. It’s helping me do one of the hardest jobs I’ve ever done and perhaps getting through the sleepless nights and challenging days has given me a different kind of confidence. A belief in myself that’s not linked to weight, appearance or my ability to control. And sometimes there’s just been no energy or headspace for anything but survival.
The ‘right’ reason to go vegan?
I’ve also found it harder to justify a non-vegan diet for myself. It feels weird to drink the milk of another species. From a mother whose baby was taken away so I could have that milk instead. That’s a very personal reason of course and is definitely linked to how much I’ve loved breastfeeding.
I have flirted with veganism over the past few months – but I was scared that I was doing it for the wrong reasons. Veganism can be a cover for disordered eating. It’s had that effect on me in the past. Was my motivation purely an ethical one? Or was it an excuse to restrict certain foods and a way of helping me control my calorie intake? Perhaps it’s indulgent to worry about my motivation anyway? Alex didn’t like the idea; he remembered how long it took me to recover last time.
But, since the latest IPCC report, I can’t justify a non-vegan diet for myself any more. I’m scared for my little boy’s future and, although it’s a drop in the ocean, I want to do everything I can to try and reduce my carbon footprint. Although there are environmental issues with any diet, the consensus seems to be that a vegan diet, particularly a thoughtful one, will massively reduce my carbon footprint.
So I’m planning to eat vegan for a month, keep a close eye on my eating and mental health, and see how I go. I’m confident that I’m doing it for the right reasons and I hope I have the mental strength to keep it that way.
It struck a chord because I was feeling uncomfortably aware of the disconnect between how my life looked on my Instagram account and how it really felt. I do live with my husband in a house I love, in the gorgeous Chew Valley. We have a healthly and happy one-year-old boy Oaklan and an energetic collie Dr Watson. That much is true.
I’m very aware of how lucky that makes me. Something the article misses out is how a collection of your favourite pictures, shared with people you love, can sometimes help create that sense of perspective during darker times.
He has never been a good sleeper and three hours unbroken sleep was a rare gift. Until six months he wouldn’t nap in a cot at all and until eight months I couldn’t leave him while he slept. He hated being put down or sitting still and needed constant attention and interaction. All of which was manageable until his sleep deteriorated to the extent we’d have regular nights when he would wake every 45 minutes or so. I was surviving on the nap I would get when Al took him for a couple of hours in the morning. Four hours of broken sleep felt like a good night. My own insomnia started to get worse. Al went away for work for eight days and everything broke soon after he got back.
I couldn’t sleep even when I had the opportunity. Bedtime and naptime made me panic. I went to bed with a dry mouth and my heart racing. I felt I had nothing left to give and spent a lot of the day in tears while feeling guilty that my stress and sadness was affecting Oaklan.
Luckily, my family came down to help for a week. While we were away in Cornwall (see the gorgeous beach photos) I had another three or four sleepless nights and panicky days. I spoke to the doctor and upped my medication to 100mg/day (the highest it’s ever been).
Over the next few weeks, our sleep was up and down. The insomnia and bedtime fear was still there. After a bad night I would feel very panicky that the awful sleep times were returning. Although my anxiety slowly reduced I started to feel very low with lots of intrusive suicidal images. I found it hard to feel connected to Oaklan and could only go through the motions of parenthood. At night, I could feel my heart beating hard in my chest as I struggled to sleep.
These feelings are slowly fading now. But it takes time to climb out of the hole. For a while I was coping on a daily basis but my resilience was really low. I struggled to manage when Oaklan was difficult or if something else made the day harder. Then I felt really guilty for relying on other people and pretty useless as a mother.
But nights have got easier to manage. His sleep is improving and Alex can settle him now. My sleep is mending and I’m feeling brighter and calmer. I hope I’m rebuilding that resilience too. Returning to work has also helped. I enjoy the balance of three days writing and four days with Oaklan.
Postnatal mental health support
So that’s the honest story behind some of those lovely pictures. Postnatal mental health problems can affect you much later than you might expect (I think technically the definition is up to a year after birth). It has been really really hard. But I’m incredibly thankful for wonderful friends, supportive family and, of course, Alex. Not everyone has those kinds of brilliant and nourishing relationships to help keep them safe and well. And it’s probably worth adding that a lot of people find supportive communities and friendships on Instagram too. This post by Holly Bourne is a lovely example.