Category Archives: Work & Projects

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.

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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Thinking of recruiting volunteer moderators for your online support community?

More and more charities are setting up online support communities – a space online for people who use their services to come together and share information, offer support and help each other to feel less alone. It’s almost expected now – if you don’t have a space like this, you may find people use your Facebook page or other social media pages to ask questions and support each other.

Communities are an excellent way to increase reach, help people connect and improve outcomes. Online community members (especially those who are established and ready to ‘give back’) are often more engaged with the charity and more likely to take part in focus groups, respond to surveys and even fundraise.

The need for moderation

But online communities need to be monitored and moderated. As an example, I recently conducted an online consultation for a charity in the process of setting up a new community. Participants identified a number of issues they had come across in badly moderated or unmoderated communities.

  • Posts going unanswered – or answers being unbalanced with some people getting lots of responses and some people getting very few.
  • People feeling unwelcome or overwhelmed.
  • Posts being misinterpreted or misunderstood.
  • Spam and trolls.
  • Personal attacks.
  • Judgmental or critical posts.
  • Incorrect information and advice.
  • Competition and comparison.
  • Arguments that become too heated.
  • Detailed discussion of suicide or graphic posts.
  • Inappropriate sexual content.

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5 star review for Miscarriage Association training materials in RCOG’s journal (TOG)

 

Learning materials for health professionals

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…

 

Writing to the Information Standard for Mind and the British Lung Foundation

screenshot-2016-11-23-19-14-26If 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 Standards recommended search hierarchy.

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.
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Strong, powerful, upsetting, thought provoking and with important teaching points – developing Miscarriage Association learning resources for health professionals

Sorry about the picture on the left....

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.

Research

  • 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.

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Writing a blog about your mental health – why and how?

Blogging about my mental health

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.

social anxiety blogIt’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.
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