Category Archives: Work & Projects

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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Standing up to stigma – why I blog about work, projects & my mental health in one place

Pressing pause

Linked in

Should my LinkedIn link to my blogs too?

Every time I go to press ‘publish’ on a tricky post exploring my mental health I pause for a moment. The way my blog has developed means that my personal struggles and successes sit alongside blogs about my work and details of my skills, training and experience.

Should I keep them separate? Will employers reject me if they read that I took Citalopram for 15 years or that I use exercise to manage my anxiety?

I know stigma and discrimination around mental health in the workplace exists. I spent 2014 time to changeproviding evidence based reports on mental health policies and support in a number of organisations across a range of sectors for the Time To Change Organisational Healthcheck programme. Tom Oxley writes a good piece about how the programme worked on pages 10 and 11 of this newsletter.

I spoke to people in every workplace who said that they wouldn’t tell their manager if they were experiencing a mental health problem. Many said they would lie about taking time off.

”I’d probably say I had a migraine or something”

Those who had been honest about taking time off for a mental health problem said they felt that now they had more to prove.

Unfortunately in some cases I could understand why. Some managers said they felt people with mental health problems couldn’t ‘cope’. Others saw investment in employees’ mental and physical health as a burden rather than something that makes moral and business sense.

”You’ve got to be careful or people will just take advantage, start using ‘depression’ as an excuse.”

”We need people on top form to do this job – if you’re depressed you just won’t be able to cope.”

1 in 6 employees are currently dealing with a mental health problem. Like colds, flu, delayed trains, bereavement and accidents it’s always going to be part of a workforce. It’s how employers deal with it that counts.

My mental health is part of what makes me. It’s part of what makes a life – and in many cases it’s part of what makes me good at the work I do.

Pressing publish – every time

In the run up to Time To Change’s Time To Talk Day on Thursday I thought I’d share some of the reasons why I press publish on those tricky posts every time.

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APP’s online peer support services: vital and life changing

“I’ll always remember the first time I met a ‘PP lady’. It was a very special day.”

“I had lots of friends who were mums but none of them understood what I was going through. I felt weird, lonely and isolated. When I found the forum I was like ‘Oh my god. People understand.”

APPLast Saturday I was invited back to run a third online peer support training session for Action on Postpartum Psychosis’ peer supporters.

Every year it is a moving and inspirational day (you can read about what we covered here). As I listened to the co-ordinators speak to new volunteers I was struck once again by just how important their peer support programme is.

In fact I think their services are a really good example of the life changing benefits that online peer support can provide. Peer support can be valuable for everyone but it is absolutely vital for APP.

Online peer support that connects those who’ve been there

Research by APP shows that women desperately want to meet other people who have been APP trainingthrough PP, to share symptoms and have time to talk. Partners said the same.

Everyone needs to share stories, to be accepted and understood – especially if you’re going through or recovering from severe mental illness. Unfortunately, because PP is relatively rare, friends and family don’t know what is is or what it feels like. There is unlikely to be someone living near you who has been there. Some people may be scared to speak about their experience for fear of stigma and misunderstanding. For most women the APP Peer Supporter training sessions are the first time they have been in the same room as someone who has also experienced PP.

APP’s forums provide that link. They connect people with hundreds of others who can support them. When someone signs up for APP’s one-to-one email support service they are actively matched with someone who has had a similar experience. The chances of finding that offline are very very small.
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Setting up a new community – defining roles in moderation and peer support.

Consultancy for The Katie Piper Foundation

Katie Piper FoundationIn September I was contacted by Kerry from The Katy Piper Foundation. The Foundation supports people living with burns and scars. Kerry was looking for more information on managing online forums. She was particularly interested in moderation strategies and procedures for managing safeguarding and escalation.

We had an initial chat on the phone where we explored different ways an online peer support community could be moderated and managed.

Almost every community I have been involved with has slightly different definitions  for members and moderators so it felt important to start by clarifying these roles.

Building on existing knowledge

Charities like YouthNet (who were pioneers of online peer support) and Mind (whose Elefriends community grew quickly and organically from a Facebook group) saw their moderation strategy and structure grow and develop with the needs of the community. They were often exploring new ground and didn’t always have examples of how a particular approach had worked in the past. You can see this learning in practice in a post about training community members from 2012.

Now online peer support is offered by many charities. It is easier for those looking to establish a new service to understand and clearly define these roles early on. But it’s always important to make sure that there is room for consultation, change and development as the needs of the community become clearer. The most successful communities are co-designed and developed with community members wherever possible.

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Engagement, co-design and community moderation on the Elefriends community at Mind

elefriendsI’ve just finished 9 months working on the mental health peer support community Elefriends. The role was a maternity cover post and focused on community engagement as well as moderation training and support.

So what did I get up to?

Six co-design workshops with community membelefriends co designers

I organised and co-facilitated six co-design workshops with community members and local Minds. All the workshops had an online consultation component.

  • Two workshops to co-create community content and ‘themes’ functionality for Sport England funded project Get Set To Go.
  • co designTwo workshops to co-create community content and functionality for Big Lottery funded peer support project Side by Side
  • Two workshops to co-design a mobile app for the community. The Apple version is in the app store now.

I worked with agencies PAN and Yoomee to create and test content and functionality initially developed in the co-design workshops.

This included three animations to encourage community members to get more active. You can see the first one here.
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New youth resources for the Miscarriage Association

“People said it was lucky really. I don’t know how to deal with that”

This quote was one of many we gathered from young women we spoke to during the youth young girl with bookproject consultation process I ran for the Miscarriage Association. It highlighted the need for additional support resources that  reflected the experiences of younger people.

Young women told us about dealing with miscarriage after an unplanned pregnancy, finding themselves isolated and unable to speak to parents or partners, turning only to friends for support and experiencing difficult reactions from hospital and nursing staff.

And now I’m excited to help the Miscarriage Association launch the resources we developed as a result.

A soft launch at Primary Care 2015

It sMA stall at Primary Careeemed appropriate to soft launch the resources at the Primary Care conference in Birmingham. It was here, last year, that community midwives and school nurses asked for more specialist resources for younger women. The Miscarriage Association’s National Director Ruth, some wonderful volunteers and I spent two days spreading the word about the Miscarriage Association and sharing our new resources.

They were universally well received and we sent boxes worth of leaflets out into the world as well as showing our new films (created for us by Rob Mitchell of MadCutta films) and chatting to anyone who would listen about what we were up to. It was wonderful to see how many people benefitted from the work the Miscarriage Association does – professionally but also in some cases personally.
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Running for Sane – Christie’s story

Exercise for mental health

I’ve been thinking a lot about sport, and running for mental health recently. This is partly due toChristies just giving page work – I’m involved in the development of Mind’s Get Set To Go programme through the Elefriends community. I’ve also written a number of posts for New Level on the benefits of exercise for mental health and wellbeing.

There’s a strong personal connection too. Exercise is a vital tool for managing my own depression and anxiety. Recently I’ve been struggling to balance my mental health needs against the need to rest and recover after physical injury (darn knees!).

It feels as if more and more people are running. There’s definitely more people out and about in the parks and along the canals. This spring and summer has seen thousands of running events across the UK. One of the best things about these events is that each one is full of people pushing themselves for charities that mean a lot to them.

Christie’s story

One of these runners is Christie Plumb. She’s running the British 10k for Sane after losing her Sane logoMum when she was 11. Christie told me she felt that the stigma surrounding mental health problems and a lack of support contributed to her mother’s death. The work of charities like Sane and Mind are helping to reduce that stigma and provide support to those who need it.

Fundraising has helped her to open up about her mum’s death, to talk about it and give people ways to support her.

But Christie has found that running has helped her too. She said that before her boyfriend suggested the NHS Couch to 5k she was convinced that running was “impossible, physically impossible for me”. But she stuck at it and found it was helping with her own anxiety, clearing her mind and improving her confidence.

I really identified with the way she described running her way out of very strong feelings of anxiety and panic.

“Within the first mile, my chest loosens up and I’m not shaking any more. It’s incredible…before the Couch to 5k I had never got past that first barrier. Now I always carry on and push through. In a way it’s an analogy for pushing through anxiety and depression. You just have to keep going, even if it feels like you can’t. You’ll get there in the end.”

In running she has found a way to honour the memory of her Mum, to talk openly about her loss to people around her, to support a charity that means a lot to her and to look after her own mental health. To sponsor her, take a look at her JustGiving page here. To have a go at Couch to 5k yourself, take a look at this page. Who knows where it might lead.

Overcoming barriers to accessing therapy – a post for the RSCPP

RSCPP connects people with local registered therapists. It also contains articles and resources RSCPP logoabout issues you might face and the types of therapy available.

Of course, these are private therapists. And therapy isn’t cheap (although if you get the right help, it can be immensely valuable). Much of the work I have done in the past is with people who could not afford to pay for a therapist or who do not want to risk spending their precious spare cash on something they consider unpredictable and unknown. It can be a huge step to speak to an NHS therapist, let alone one for whom you have to pay.

RSCPP recently asked me to write a blog based on an interview with two of their therapists. With this in mind, I thought it would be helpful to focus on the barriers people face when accessing therapy and how RSCPP therapists suggest they may be overcome.

 “I’m not the sort of person who gets therapy, I should be able to cope on my own!”

I spoke to Dawn Davies and Sarah Lack, both registered therapists on the RSCPP site. Both of them felt that one of the biggest barriers to accessing therapy is the way we judge ourselves. Dawn suggested that there is still some stigma attached to having counselling and sometimes people feel that they are not the ‘type of person’ who would need counselling or that they ‘should’ be able to cope without help. Depression and low self esteem can make us judge ourselves harshly or lead us to feel hopeless about the possibility of anything helping.

Sarah says that often a recommendation from a GP can help people feel more justified in seeking help. In my experience, many people find it helpful to talk to others about their experiences first – perhaps in an online community such as Elefriends or TheSite.org. This can help normalise the need for support and see how it has helped others. Opening up in a supportive online community can often be the first step towards seeking further help.

Talking to your therapist about your concerns can help too. Dawn says:

“It is completely normal to feel a wide range of emotions before embarking on counselling and most people will feel a certain level of anxiety before seeing a counsellor for the first time. Counsellors will understand how difficult it may be for you to make that first step and will not pressure you to talk about anything before you feel ready”.

“I can’t attend face to face sessions”

Sarah says that “finding a workable regular, weekly appointment time amidst already busy work and home schedules” can often be a barrier to accessing therapy. School, college, work, disability, weather and family can all get in the way and take priority. If face to face sessions are impossible, you could consider accessing therapy through online or over the phone. A number of therapists on RSCPP offer online or telephone sessions – they call it ‘telephone therapy’ so search for that. To get the most out of these Dawn says that it important you find a private place away from family and external distractions if possible.

“I don’t know what to expect and I’m scared”

Fear of the unknown can exacerbate anxiety. Everything may seem much more manageable after the first session when you have found the room and met and talked with the therapist. But both Dawn and Sarah say that the first session doesn’t have to be scary. Your therapist will do everything they can to help you feel comfortable, especially if you tell them your concerns about the session. You’ll usually talk about confidentiality and how you could work together if you choose to continue. You’ll probably also be asked to talk a bit about what brings you to counselling and what you would like to get out of it. You might find it helpful to think about that beforehand.

“I tried therapy, but I didn’t like my therapist”

If you have built yourself up to attend a session and it doesn’t feel right, it can be a huge disappointment. You might feel that it was pointless or that this has proven that therapy definitely isn’t for you. But both Sarah and Dawn emphasised the importance of finding the right person. As well as the right professional qualifications, you need to find someone who you feel comfortable with. Every therapist knows the importance of getting this relationship right and all would respect your decision not to continue with them. Dawn suggests meeting more than one therapist before making your decision. This is easier with private therapy, as you do not have to wait for another NHS therapist to become available. Of course, it is also more expensive. It is worth asking therapists if they do a free or reduced fee introductory session to help you decide.

“There are many different counsellors out there and just like in our everyday lives we will get on better with some people more than others. If you have had a bad experience it maybe because you haven’t found the right counsellor for you.”

You might feel that it is hard enough to open up to one stranger, let alone finding the time, money and emotional energy to ‘shop around’. Dawn says that choosing a counsellor who uses more than one therapeutical approach can help, as they can offer different ways of working depending on your needs. You might also find it helpful to read up on a counsellor and ask them questions by email to help you decide whether they are right for you. Making a shortlist of your favourite options and only visiting the second and third if the first one doesn’t work out could be a good approach.

The main thing to remember is that there are as many different experiences of therapy as there are combinations of therapist and client. One or even two or three bad experiences does not mean that therapy cannot help you.

Developing youth resources with the Miscarriage Association and Brook

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

‘Crazy’ by Amy Reed – a review of a YA book about bipolar disorder.

A review of Crazy by Amy Reed – published by Simon and Schuster

Crazy by Amy Reed

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