Category Archives: Work & Projects

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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Community moderation training for OCDAction

Last week I ran a session on community moderation for OCDAction.OCD action

Unlike my session for Leeds Mind (which was for community managers and focused on developing a moderation strategy) this session was for moderators themselves.

OCDAction have an established community but they want to expand their moderator team and make sure their current moderation practices are as effective as possible. They planned to use this session to help their first group of volunteers get started. Learning would also feed into new guidelines and support for future moderators.

Moderator skills

We started with an overview of the strengths and limitations of online support and the nature of community moderation. We spent the majority of the session identifying and exploring the main skills that moderators might need and practising applying them to example cases. We looked at:

  • emotional support and empathy
  • good comprehension and listening  through language
  • communicating effectively through the written word
  • resolving conflict
  • understanding and respecting boundaries
  • courage and assertiveness
  • a good knowledge of OCD and a genuine desire to help

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An introduction to community moderation

Screenshot 2016-03-09 21.19.12

Every community I’ve worked on has been set up slightly differently

This week I travelled up to Leeds to run a workshop I called ‘An introduction to moderating online communities’.

It was attended by three groups associated with Leeds Mind. All of them were thinking about online peer support. Some had a platform built and in testing. Others were still figuring out what, if anything, they wanted to offer. The session was designed to give a basic overview of those important questions and decisions that anyone setting up an online peer support community should consider. We also explored the benefits and risks of some of the options available and started to think about the needs of specific communities.

“It was a very thorough, well-paced and thoughtfully structured workshop. A great introduction to the topic providing plenty of points to consider”                                               Zoe Ward, Senior Commuications Officer, NHS Leeds South and East CCG

I started the presentation by posing a list of key questions which we considered throughout the session. I thought I’d pose them here too.

What is the problem? Why? What is your experience?

These are questions you should be asking people from the very beginning. Without it you risk making expensive mistakes and creating products people don’t want or need. Talk to people. Test your assumptions. Don’t just ask what people want. Ask why they want it and then consider different options for solving that problem. Create something small and test it out. Keep on asking, reviewing and making changes – what people say and what they do in practice can be quite different.

co design

 

What is community moderation?

Next we went back to basics and defined our terms. Moderation, safeguarding, peer support, engagement – these can sometimes mean different things to different people. We can’t make useful decisions until we’re all talking about the same thing.

What kind of moderation do we want?

In defining community moderation we came up with a number of different types (including pre and post moderation) and a number of different roles that a moderator could have (including ‘policing’, providing support and facilitating peer support). We discussed what these might look like in practice.
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