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.
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).
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 →
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 →
Stage 1 – Online and face to face workshops with young people
“I’ve honestly literally never spoken about my experience with anyone since I left sixth form, this is the first (and possibly last) time – but I’m happy that I’m using it to hopefully help others”
I was recently approached by the Miscarriage Association to help them research and develop youth friendly online (and possibly offline) resources. Young peoples’ voices are missing and their needs are not being fully met by the Miscarriage Association’s current offering. But before we decided what to develop, we needed to do some research to find out a bit more about what young people were experiencing, what they want and – most importantly – why they want it.
Knowing WHY helps us get a deeper understanding of the need. Knowing that a young person wants online videos is one thing, knowing that they want them because they feel alone in their experience and want something to help reduce this isolation is much richer information. If we know this, we are in a position to find the very best way to meet this need.
Our hope was that the young people we worked with in this research phase would become engaged enough to stay involved and work with us through the development phases too.
Working in partnership
Our first step was to approach Brook. We’d identified that they had little online information about miscarriage and knew that for many young people Brook would be the first port of call when they needed help with pregnancy loss. Brook are redeveloping their website and resources so it made sense to work in partnership to share learning and ensure that young people were supported at every stage of their support-seeking journey. Continue reading →
A review of Crazy by Amy Reed – published by Simon and Schuster
It’s hard to truly imagine what depression or bipolar disorder is actually like. The language of mental health is woefully inadequate. The word ‘depression’ has become part of the spectrum of everyday language used to describe feeling sad. We’ve all said or heard it. “My team lost, I’m so depressed” or “God, this TV programme is so depressing”. As a result it becomes harder to find the words to adequately distinguish between natural sadness and the entirely different experience of a chemically depressed mind.
Someone without diagnosed depression might fail to understand why those who have can’t ‘just cheer up’. Those who are ill might judge themselves a failure for feeling unnaturally sad or incapable. A greater linguistic distinction would be helpful.
But even if the words depression, mania, OCD or psychosis were only ever used to describe specific conditions, they still don’t explain what it actually feels like. That’s where stories can play an important role.
Reed’s ‘Crazy’ is one of those stories. It explores a mental health crisis through the eyes of those experiencing it. Told in a modern epistolary style through emails and instant messages between two teenagers, it has an immediacy and deeply personal feel that works well with the subject matter. After meeting at camp, Izzy and Connor start exchanging emails and chatting online. It soon becomes clear that something isn’t right. Izzy’s highs are too high and her lows are scary and dangerous. Continue reading →
Just before Christmas I wrote a piece for the Guardian on why I volunteer at Christmas. It was a personal explanation of my motivation to volunteer, why I’ve continued to do so since leaving YouthNet and why it’s particularly important at Christmas.
It was one of a series on Christmas volunteering. It was the only one about online or virtual volunteering. I’m glad it was represented – I’ve managed online volunteers for many years and have seen it becoming increasingly popular, especially in support work. I wanted to explain in a bit more detail how it can have as much, if not more, impact as your more traditional face to face volunteering.
A more detailed description of what running a live support chat is actually like can be found here. Here’s some more info on the volunteer role I managed for five years – online peer advisors. If you’d like to chat support volunteering, virtual volunteering, training volunteers and giving peer support online, drop me a line.
Now I’m off to open up TheSite.org chat room for another Sunday support session.
The aim of The Site.org content is to provide clear, straight talking and supportive information for young people. Articles respond to questions young people search for and help them to understand their situation and options.
Trouble getting help for mental health
This article helps young people who have taken steps towards accessing support but have struggled to get the help they need. This might be because their GP didn’t respond how they had hoped; they have been referred but haven’t yet heard anything; counselling didn’t work or they didn’t like their therapist.
It aims to give reassurance, emotional support and practical solutions.
Accessing your GP can be a struggle. All too often young people fall through the gaps. This was obvious every day in the work I did in YouthNet’s Engagement and Support team on overcoming barriers to support. I hope that articles like this one and services such as Doc Ready will help young people feel more able to get the help they deserve from mental health services.
I’m really really pleased with this piece. There’s a bright future in front of you. Any writer who can follow a brief is worth their weight in gold!
Holly Thompson – TheSite.org Editorial Team
This article gives an overview of the types of online counselling available for young people. It also gives them the information to help them decide if it is right for them. It includes information on online self-help services (both open and prescribed) and one to one counselling support online. It also looks at where and how it is accessed and how to tell if a service is reputable.