Tag Archives: Online Support

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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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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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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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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Take 5 to blog for Time to Change

Time to Talk for Time to Change

Today is Time to Talk day. Once again the Time to Change campaign is encouraging people to take some time to break the silence that so often surrounds mental health problems and have a conversation with friends, family or colleagues. Or, in this case, the internet.

#Take5toBlog

So here’s my 5 (ish) sentence blog.take 5

My name is Clare and I have experienced depression and anxiety. It’s made worse by my errant hormones. I’ve been on Citalopram since I was 17. I’m trying to come off them now but it’s HARD! I have stalled at the 10mg mark but will be reducing in tiny tiny instalments again soon (when I’m feeling strong and the spring sun starts to shine).

My mental illness has affected my education – I had to repeat a year of university – and my relationships. Before Alex, pretty much all of my serious relationships ended because of my mental health.

My greatest source of support has been my boy Alex. He also manages anxiety and that shared understanding helps us care for each other. I’m also lucky enough to have supportive friends and family, many of whom also experience mental health problems of their own and to whom I can talk openly. There were times when I couldn’t make sense of my experiences in my head or out loud and then my journals and writing kept me going. I wrote to them like a friend.

I’m deeply aware of how fortunate I am to have the people around me I do. I’m thankful for them every day. My hope for the future is that everyone is able to find that network of support. A lot of the peer support work I do online is motivated by the desire to help people build that.

I’m taking 5 on Time to Talk day because I’ve found that being open and sometimes vulnerable in the world helps others be the same to me. And if I can help someone take that very first step to seeking help, to feel the relief of sharing and normalising their experiences, I will. Every time.

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

How do you run a good training session in an online chat room? 17 tips and ideas.

youthnet volunteer network

Last night I ran an online training session for YouthNet’s chat moderator volunteers (I’ve written a post about what is is like to moderate real time support chat for young people here). We all joined a chat room in YouthNet’s online volunteer community for an evening session.

The focus of this chat was talking therapies – learning more about them and sharing knowledge as well as discussing how they might come up in support chats and what we, as moderators, can do to make sure the young people who come to the session get the right information.

Good practice for running a training session in a chat room

Using a chat room for training sessions enables you to have more real time discussion. It Screenshot 2014-01-31 13.19.21brings everyone involved in a project or role together at the same time. It’s particularly useful if those being trained are spread out around the country. Some of the things I’ve learnt from running online training chats include: Continue reading

Guardian Voluntary Sector Network Xmas Volunteering

Representing online volunteering in the Guardian

Just before Christmas I wrote a piece for the Guardian on why I volunteer at Christmas. It was a pic of Xmas volunteering piecepersonal 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.

 

Moderating real time support chat with TheSite community

What does moderating real time support chat online for 10 – 25 young community members involve?

thesite.org

Support chat

Every other Sunday I moderate support chat on TheSite.org. TheSite runs a number of types offostress meet the moderator chat – I’ve also been an expert for their recent Mindfulness chat. I used to do moderation as part of my role as Advice and Training Manager at YouthNet – but since leaving I have continued in a volunteer capacity.

Support chat is the most common type of chat. For two hours, four evenings a week, the chat room is open for anyone to sign into. Usually it’s community members who come along (young people who are regular chat and discussion forum users) but sometimes it’s a gateway for new people to discover TheSite’s support service. Chatting in real time helps to strengthen the community who gather around the discussion forums. And sometimes regular forum users come into chat under a different name to discuss a more confidential issue.

Support chat is a group peer support space. It allows young people to chat in real time about their difficulties, get peer support from others and give people the benefit of their own experiences and suggestions. Sometimes it is a space for chat and distraction.

It’s a non judgmental and safe space. It is the role of the moderator to keep it that way – even when it gets very busy. Sometimes the chat transcripts can run to 80-100 pages when downloaded into Word. That’s a lot of support for an evening. In general there is a strong focus on managing mental health and wellbeing, although lots of other topics come up too. These can include friendships, relationships, self harm, accessing health services, school and college, online dating, bereavement, music and X Factor (to name a few!).

A moderator’s role

As a moderator I will be ensuring that everybody in the chat gets support and noone is ignored. This can involve offering suggestions and signposts or encouraging others to offer peer support. I am not there as a counsellor and would never diagnose or tell someone what they should do. Instead I am there to facilitate peer support, to give young people the space to talk and help them decide what courses of action are right for them. Continue reading

Online peer support training with Action on Postpartum Psychosis

Running a training day for volunteers working on a new online peer support service for APP

I was really pleased to be asked to help out with APP’s new online peer support programme.Action on Post Partum Psychosis logo

APP has been funded to provide peer support to women with postpartum psychosis and their partners. They have been running an online forum for over a year and are now looking to expand their offering to one to one email peer support. Women with lived experience of PP will be trained to offer email support to women who are in the early stages of recovery.

Benefits of online peer support

One of the real benefits of online peer support is the fact that people are able to find, connect and talk to people with experiences similar to theirs from all over the country, or indeed the world. It’s reassuring to find out you are not alone and helpful to hear how others coped in similar situations.

This is particularly relevant with postpartum psychosis. Many women may not know anyone else in their area that has experienced it. Often, even if there were someone, that person may not feel comfortable talking openly about it. This service will enable women to find support and reassurance from someone who knows what they are going through.

It also sounds as though many men whose partners get PP have no idea where to turn. They often try and support their partner in hospital alongside holding down their job and caring for other children. They often feel they need to be the ‘strong’ one – and disregard their own emotional needs. While the one to one support is not yet available to them; partners looking for support regularly use the forum.

Peer support in the training room

Like the Elefriends mental health community meet up, there was a lot of peer support in the training room. Unlike the Elefriends meet up, many of these women had never met someone who had experienced PP face to face before. This gave the whole day a really moving and inspirational feel. Continue reading