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).
We started with a survey. This helped to give us a sense of people’s experiences and the need for the products. I used the survey responses to develop two workshops which I ran this weekend in Birmingham.
We discussed parenting experiences and needs at various ages and stages of recovery. We also thought about what different aged children might need to know – and looked at some existing resources written to help talk to children about various mental health problems.
Working with women and their partners is vital. Experiences of PP and recovery are so varied. So are experiences of parenting and the needs of individual children. We are certainly not going to be telling people what to do or how to parent. We hope to produce something that recognises possible difficulties – and offers support, suggestions and signposting to help address them.
I hope to continue to co-create these resources. I have set up a private working group online (using Ning) where volunteers will be able to offer comments and suggestions on my outline and drafts. It’s amazing how many people have signed up. APP are really lucky to have a group of such passionate, thoughtful and dedicated volunteers working for them and for women experiencing PP right now.
Last week Oaklan and I went on an adventure to London for the launch of the latest version of Mind’s flagship booklet ‘Understanding mental health problems’.
I wrote this when I was pregnant and it was great to see it finally published. It’s the first title to be published in the new full colour format – complete with pictures. It looks great and I’m really proud of my involvement.
‘Understanding mental health problems’ is one of the titles that Mind publishes as a booklet. You can find it in local Minds as well as workplaces, charity shops, universities and GP surgeries. You can also read it here. You can see the other titles I have written for Mind here.
Is that a cake or a book? Either way I want to eat it please!
Oaklan enjoyed himself too. He got a free apple in Pret after stealing it from the box and charming the staff, visited our old house in Mile End, had a picnic in Victoria Park, played on the swings and in the sand, met a London baby, slept on a walk through the Olympic Park, mashed strawberries into Mind’s carpet, came with us to the pub for a quick drink, looked out of the window of the DLR at Canary Wharf and threw spaghetti about in my brother’s kitchen.
The awards aim to ‘encourage excellence in the production and dissemination of accessible, well-designed and clinically balanced patient information’. They look for accessible information that is evidence-based and well researched. It’s also important that people with lived experience are involved in the production of the information. You can see all the award winners here.
Information for young people (for the Miscarriage Association)
The youth resources I researched and wrote for the Miscarriage Association were highly commended. They were also given a runner-up award in the special category for Young Adults. I was particularly pleased with this award as I managed the whole project, conducted the on and offline research with young people, developed recommendations and wrote the resources themselves. You can read more about the consultation process here.
It was reviewed by Dr. Hannah R Bridges of HB Health Comms Ltd who wrote:
‘Wow! This is a wonderful example how good consultation and understanding your audience can lead to great quality information! The Miscarriage Association has identified a need for materials to support young people, who have different experiences and support needs. The consultation, planning, and promotional plans show excellence in producing health information. This shows through in the end products – high quality and extremely well-tailored to the audience. The insight and thought that has gone into this is commendable. Take for example the ‘what happens when you call our helpline’ page – simple, highly visual, concise and reassuring information to encourage young people in need of support to dare to pick up the phone – the overall impression is one of kindness. Just wonderful.’
Money and mental health (for Mind)
The information product Money and mental health I wrote for Mind was highly commended. It also received a runner-up award in the special category for Self-Care resources. This resource was one of the first to be written in a new ‘hub’ format. It involved research with Mind’s online community and social media audiences, working with bloggers with lived experience and researching common problems and support options.
Unfortunately, I couldn’t attend the awards with colleagues from either charity – at 39 weeks pregnant it wasn’t worth the risk of going into labour on the train from Bristol, at the awards or in my brother’s shared house. But it’s a lovely way to leave work for a while.
Last year, James Withney of The Recovery Letters emailed to see if I would be interested in contributing a letter to the published anthology. The Recovery Letters are addressed to people experiencing depression. They share experiences and give friendship and hope for recovery.
I’ve tried to emphasise that you can find eating problems incredibly difficult to live with, without necessarily having a diagnosed eating disorder. I also wanted to make sure it was clear that you can have an eating problem or disorder without being noticeably over or underweight – and that you shouldn’t need a certain BMI or a particular diagnosis to access treatment. It was important to make sure the information was accessible and useful to everyone – including men and older women. These are both groups who are affected by eating problems but often less able to speak about their experiences and access treatment. I also tried to include blogs and quotes from lots of different people, about a range of experiences and problems.
It wanted to talk about the fact that even thinking about recovery can be scary. Eating problems can feel safe – and even exhilarating. Despite an eating problem making your life difficult, you may not feel ready to try and recover straight away. On top of this, I wanted to expand the information we provide on coping with recovery – dealing with food and eating every day in an on and offline world that can seem to spin around eating, food, weight, appearance and body image (you can read more about my own experience here). Sometimes you can look healthier physically, while mentally you’re actually feeling a lot worse. Recovery can take a long time and relapse is common.
The Information Standard
All Mind products are written to the Information Standard. This means that a first draft was reviewed by a number of people with personal and professional experience of eating problems. I love this stage of the writing process as it always gives you new things to think about, and opens my eyes areas I may not have considered or covered properly. We also make sure we consider and respond to all the feedback we receive – I’m looking forward to reading this too (whether it’s positive, negative or suggestions for improvement).
I was really chuffed to hear that the Miscarriage Association learning materials for health professionals were given a 5* review in the Royal College of Obstetricians and Gynaecologists’ journal The Obstetrician & Gynaecologist (TOG). I did a lot of work on these resources and it’s brilliant to get such positive feedback. Can’t say it better than Kath Evans from NHS England who partially funded the resources…
If the events of 2016 have told us anything, it’s that people can write any old rubbish and post it online as fact. And people will believe them. Especially if those people are vulnerable or anxious.
And no one is more vulnerable or anxious than when it comes to researching health concerns. The internet is our first port of call for any worry – but news articles can leave us feeling confused and worried about what research shows and evidence recommends. I wrote about this in relation to antidepressants in pregnancy here.
Hundreds of other articles identify our most vulnerable moments and use them to drive traffic to their advert loaded pages. If you’re struggling to conceive it’s hard to avoid clicking on an article entitled ‘Trying to get pregnant – 10 proven sperm killers!’
On the same search results page I found ‘10 things to do if you want to conceive’ and ’10 myths about trying to conceive’. They were basically the same and no one was any the wiser.
Reliable, balanced, current and evidence based information
The Information Standard’s recommended search hierarchy.
It’s really important that people have access to reliable, balanced, current and evidence-based health information. Which is where the Information Standard comes in. Any organisation achieving the Information Standard has undergone a rigorous assessment to check that their information production process generates high quality, evidence-based, balanced, user-led, clear and accurate quality information. Continue reading →
Sorry about the picture…noone wants Trump on their blog…
Skimming through the British Medical Journal, I came across a blog called Breaking bad news in maternity care. It’s a lovely piece about the new learning resources I worked on with the Miscarriage Association.
I coordinated the development of these resources, working with the National Director of the Miscarriage Association, the Media Trust and lots of service users and health professionals. Mary Higgins describes them as strong, powerful, upsetting and thought provoking with important learning points. I’m pretty pleased with that.
The resources are online now although we’re not launching them officially until the new Miscarriage Association website is live. But it’s great to see that health professionals are finding them useful already.
There are six films – one each for ambulance crews, A&E staff, GPs and booking in staff supporting women with pregnancy loss and two for anyone talking to women about management of miscarriage and what happens to the remains of their baby. Each one is accompanied by a good practice guide.
I created a short survey for women and their partners. It asked them the top three things they would like to tell the relevant health professional about their care – and had a free text box too. In the BMJ blog Mary Higgins writes ‘what I say will be remembered for the rest of their life’. And it’s true. Most women who responded remembered exactly what they were told – good or bad – even after 10 or 15 years. It’s so important to get it right.
I also surveyed health professionals to find out what they and their colleagues found hardest about these situations and where they would like more training.
I wrote a report on each of these six areas, identifying key learning points and pulling out quotes and experiences we should highlight.
A few weeks ago had an internet date. Of sorts. Not a romantic first date (thank goodness) but a face-to-face meeting with someone I met online. Someone like me in lots of ways. Someone who could be a friend.
We knew a lot about each other’s vulnerabilities and fears before we set eyes on each other. And that made things much easier. The conversation could get right to the good stuff. We could be open and honest. We chatted about medication, work, diagnoses, panic attacks, weddings and how our dogs help with our mental health. Not really first date fodder.
It’s all down to our blogs. Claire writes WE’Re AlL mAd HeRe about social anxiety (she’s also been asked to write a book about anxiety based on her blog – wow). She got in touch a few months ago and suggested lunch. I’m so glad she did. Meeting inspiring new people is just one of the things that blogging has done for me.
I’ve had a number of readers get in touch with me recently about starting a mental health blog – overcoming those demons of uncertainty that whisper ‘what’s the point, who cares what I have to say?’
I know the feeling – I have it about writing fiction. But I thought I’d share a little about what blogging has done for me – and a few things that helped me get started. Continue reading →