Category Archives: Work & Projects

Pregnancy loss and mental health – new resources online now

I have just finished researching and developing a series of resources around pregnancy loss and mental health for the Miscarriage Association.

Research

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.

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Community moderation training licensed to Cardiff Women’s Aid

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

 

 

 

WRISK – understanding and improving communication of risk during pregnancy

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.

Co-creating new resources with Action on Postpartum Psychosis

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).

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Understanding mental health problems – booklet launch

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.

BMA Patient Information Awards for Mind and Miscarriage Association work

I’m really chuffed to be able to share that both Mind and the Miscarriage Association received awards at the British Medical Association Patient Information Awards 2017 for information and that I researched and wrote.

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.

Published in The Recovery Letters

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 always believed in letters and writing as a way through difficult times. In 2012 I wrote about the benefits of public and private writing, on and offline. In 2013 I wrote about creative letter writing for self-guidance and managing mental health and in my post ‘Understanding mental trickery, notes from depression island‘ I used islands as a metaphor for the concept of depression being such that it’s often hard to remember you’ve ever felt happy or imagine you’ll ever feel better. And when you’re not experiencing it, it’s hard to understand or even remember how it feels.  I introduced the idea of finding and making connections between a happier mind and a depressed one. These messages don’t always have to be words. But it’s this idea that forms the basis of my recovery letter.

The book is published next week. I got my copy yesterday. There are some wonderful messages from people prepared to open up and be vulnerable, to share their experience to help others.

And I’m also chuffed to report that mine is the very first letter in the book – and that is has been selected as one of 12 letters that will be on display at the 2017 Mental Wealth Festival.

Understanding eating problems – updated Mind resource

I don’t usually blog about individual Mind booklets and online resources I write or update (you can see the list here).

But my most recently completed product is pretty close to my heart. It’s called Understanding eating problems.

Changes and updates

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).

NICE recently updated their guidance around the recognition and treatment of eating disorders. These changes were reflected in the update too.

Miscarriage Association learning resources ‘Highly Commended’ in EVCOM Awards

Highly commended

I’m really pleased that the films I helped research and develop as part of the Miscarriage Association’s new learning resources for health professionals have just received a ‘Highly Commended’ in the Drama category of the EVCOM awards. These resources have been well received by health professionals too – they were given a 5* review in The Obstetrician and Gynaecologist in January.

I’ve written more about the work I did on the project here. The next step is to work with the Royal Colleges to accredit the resources. I’m currently researching the different options and approaches to accreditation at the different colleges.

Community development and management support for Contact a Family

 

Contact a Family got in touch late last year. They were looking for help setting up their new community, developing guidelines, establishing processes and training new moderators. Over the last few months I have been working closely with them and we’re almost ready for launch.

Scoping

I spent some time on scoping work – reading existing research and interviewing stakeholders throughout the organisation. This helped me understand the different requirements for the community and develop a proposed action plan.

Online consultation

Contact a Family had done some extensive research on their digital offering more generally but I wanted to do some more consultation work with potential community members.

We chose an online consultation as this was felt to be more accessible to parent carers who could sign on at any time on each of the three days of the consultation. It also enabled us to involve parents from all over the country.

Contact a Family had chosen the community platform they would like to use so I was able to set up the consultation on a basic version of the new community. This gave parents a chance to offer feedback on the platform itself and helped to familiarise them with the site.

77 people expressed an interest in the community consultation and development. We had 26 participants in the consultation workshop, giving us 228 comments and answers to our questions. Lots of participants volunteered to stay involved, give feedback on developments and form a ‘welcome committee’ when the community launched.

The consultation took place over three days.

On day 1 we asked about what different people want from an online community, their priorities and what would put them off.

On day 2 we asked about moderation and guidelines – how we can keep the community safe without stopping people from having the discussions that help them.

On day 3 we asked participants to have good look round the existing set up and think in more detail about specific groups of users – parents of children with rare conditions, people running or looking for support groups and parent carer forum representatives.

Thank you, I’ve really enjoyed being part of this new venture and it would be a pleasure to be on the welcoming committee.

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