Talking & Walking Out Of Darkness

The following post is a write up of the speech I gave on Saturday at the first ever Walking Out of Darkness event. Some of it may be slightly different from what was actually said on the day; mostly because I got the most emotional I have ever been giving a speech!

claspwalk

Hi everyone,

My name is Kat and I’m here today because when I heard what Kenny was trying to achieve this weekend, I had to get involved.

These days I’m very open about my mental health, so I’m happy to share with you that I’m not okay and in fact I haven’t been okay for a very long time.

I’ve used mental health services on and off for a decade and probably have enough labels to keep the post-it note industry alive. I’ve also come far too close to the edge myself and there were times, certainly, when I couldn’t bear the thought of being here for another day.

Looking around today, I can see a fair few familiar faces and, given what we’re all here for, I’m pretty sure I may be preaching to the converted, but let’s give it a go anyway.

Even for me this has not been an easy speech to write which these days is a novel experience for me. Over the last six years I have dedicated a large amount of my life to campaigning around mental health issues including Suicide.

I have spoken to countless individuals, and at events around the country about my experiences and those of my peers. Hell I even took on Jeremy Paxman live on Newsnight earlier this year to talk candidly about my experience of Self Harm and what I think needs to be done to help other young people suffering in silence.

But Suicide, even now, is something of a taboo within a taboo and not something that I can easily find words for.

You’ve probably all heard the statistic, that one in four of us will be affected by mental health issues. However I’ve often argued that it’s four in four. Because one in four doesn’t take into account the distress and despair felt by friends and family when a loved one is struggling. And yet many do not, cannot talk about it.

I used to be one of them. Even though I’ve been ill most of my life it wasn’t until six years ago, aged 19 that I “came out of the mental health closet”.

I was lucky enough to stumble across an amazing charity who changed, if not saved my life. The charity in question was YoungMinds and without their support there is no way I would be here today giving this talk. YoungMinds helped me to find my voice and start standing up to stigma. I joke that they gave me the activism bug, but more seriously, they helped me express the injustice I had long felt and gave me a platform to actually do something proactive.

In fact some of my friends from YoungMinds are here today so if you see anyone wearing our tshirts come up and say hello. I’d also urge you to sign up to our mass movement for change, YoungMinds Vs as we attempt to fight the pressures faced by young people across the UK.

I now work for a mental health start-up called BuddyApp. We’re a small team and we work with NHS services up and down the country to help people of all ages have a better experience of treatment using something strikingly simple and accessible; a text message.

Because I am so open I am often seen as one of the more visible advocates for service user voice in the mental health community. Because of this a lot of people reach out to me. It happens, sometimes several times a week and the sad thing is the conversation always starts the same way:

I’m really sorry but I don’t know who else to talk to

Now I’m glad that people reach out to me, don’t get me wrong. However it saddens me that, even in 2014 in a supposedly enlightened culture, there aren’t more of us willing to stand up and speak out. I wish my friends and the acquaintances and strangers that message me don’t have more options.

So everyday, sadly, I see the human cost of distress, of mental illness and of suicide. And sometimes it feels to me as though it’s everywhere, just hidden behind a thin veil. Perhaps if we stopped and looked around the crowds we would see that not everyone manages to keep their mask on, perhaps we could take a bit more time to carry out some random acts of kindness.

Be kind, for everyone you meet is fighting a hard battle.

When it comes to Suicide, we can talk about statistics until the proverbial cows come home. I could rattle off numbers and tell you how many thousands died last year.

I could tell you that the biggest killer of men aged 20-49 is not road traffic accidents, it’s not Cancer and it’s not Heart Disease..it’s Suicide.

But I guess, and I can’t believe i’m quoting, or rather misquoting this person, but as Stalin almost said:

The death of millions is a statistic. The death of one man is a tragedy.

What makes us sit up ad think, what really pulls our heart strings and makes the numbers feel more human, what we sadly often lose, is the individual tragedy.

I’m guessing that many of you, like me, are here today because you have lost someone you love or have come too close to taking those final steps for yourself. There is no pain like it, I know.

I was 18 when I first lost someone to suicide. Her name is Casey Brooks. She was a charming, funny, caring girl with friends all over the world (we met through an online support group). Although I never met her she provided me, and many others with support in our darkest hours. And yet, in hers, that last time, she didn’t reach out.

Casey Brooks

Casey didn’t think much of herself, a common problem for people like us with mental health issues. I wish she had truly understood the love and the laughter she brought to people’s lives and what the absence would mean. I wish could see the effect her leaving had. I don’t think she could have guessed that all these years on her online memorial would have almost a thousand members. I wish she knew that her parents never stop talking about her, or about the work they’ve done in the last few years to help save other young lives. Her dad has also written this book which I would recommend.

Since that fateful day I have come far too close, far too often to losing far too many others.

Three weeks ago I received a text that made my blood run cold. It was one of my dearest friends, who I have known and cared about for years and she was saying goodbye. I think my heart stopped beating as I read those words.

I know she’s come close before, I’ve held her as she wept, whispered supportive words down the phone at 4am when everyone around me was asleep, I’d do anything for this girl. But this time felt different. I guess after all these years being involved in the mental health community, and all my safeguarding experience, you start cultivating a pretty accurate gut reaction. It didn’t help that I was also several hundred miles away and couldn’t do what I desperately wanted to, which was to hold her and keep her safe until the storm passed.

I’m so happy to be able to say that she’s still with us but it breaks my heart knowing how close she came and how little she felt she had left to live for.

And i’m proud of her for telling me, I am so grateful I didn’t lose her that night.

When we are struggling and feel alone, we need the courage to reach out, to say this is not how my story ends. And appropriately for today, if we see that hand reach out, we must have the courage to clasp it and hold on, as long as it takes.

I want to thank you all for joining us today Walking Out Of Darkness; blessed are the cracked for we let in the light. I’d also like to think Kenny, the CEO of CLASP, who has worked so incredibly hard to bring us all together today.

And I will leave you with this quote from Ben Okri, which struck me as apt for today;

The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and be greater than our suffering.

Thank you

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My recent talks about digital youth mental health

Hello readers,

I must apologise for the lengthy gap between my last blog and this one. My blogging activity (or lack thereof) is directly linked to the amount of time I have spent running around working, speaking and campaigning so as you can imagine I’ve been very, very busy recently.

I will be following this post up with a blog on what young people want when it comes to mental health support, and in particular what role they want technology to play. It’s something I care about passionately and have dedicated much of the last six years of my professional life to.

There have been two events I’ve spoken at recently that have acted as the catalyst to the aforementioned blog which I thought I would summarise to give you all some context and an update on what I’ve been up to recently if you haven’t been following my Twitter account.

The Kings Fund:
The Art of The Possible: How will health and care be transformed in the age of information sharing?

This first event was a roundtable discussion, it was incredibly popular as you can imagine given the title and by the end it was standing room only. It heartens me that there is such a clear, strong appetite for discussions of this nature.

It’s also one of the first events I’ve been to in a long time where I knew next to no one- often I feel I am just preaching to the converted so this was a chance to share my experiences and ideas with a new crowd.

We adhered to Chatham House Rules during the event so I can’t divulge who said what but I will say that it was very interesting how many people started their contributions with comments along the lines of “I could never say this at work..”. This suggests to me there is still a lot of work that needs to be done to bring digital to the masses in the health sector as well as a fair amount of resistance to new ways of working which is something I certainly experienced while working for the NHS.

I gave the opening talk, sharing my personal experiences of using mental health services for the last 11 years and being a digital entrepreneur and activist. This involved a quick run through of my own health journey from the age of 6 when I became symptomatic right up to where I am now aged 25.

I spoke about how much the internet and the support I received online not only helped but probably saved me, especially during my teens when I was at my lowest point. If you’ve heard me speak before you will know I have spent a good 12 years using online support such as chat rooms, message boards and in the last few years social media to provide and receive advice, information and very importantly peer support.

If you’d like to read more I strongly recommend you read this article by Dr Roger Stedman who attended the event which has the brilliant title; Time For a Digital Citizens Revolt.

Westminster Briefing: Improving Mental Health Services for Children and Young People: Identifying Need and Targeting Support 

Yesterday I found myself on a list of speakers which pretty much sums up my dream team- three incredible women who I’ve had the distinct pleasure to work with over the last few years:

Geraldine Strathdee- When I first started working at the NHS a few years ago everyone, and I mean everyone that had anything to do with mental health said to me, “Kat you have GOT to meet Geraldine, she is your kindred spirit” – I was not disappointed.

Geraldine has some serious clout as National Clinical Director for Mental Health in England but what I find truly inspirational about her is that she’s so down to earth and when it comes to mental health she just “gets it”. She  works, often 18 hours a day, always seven days a week, to try and improve mental health services. She is a passionate advocate for service user voice and involvement and I think she, against all odds, bringing about real change in the system.

She’s on Twitter and always open to ideas, comments and suggestions- in particular if you know of good practice happening in mental health please tell her so she can share the learning. She also blogs and you can find some of them here.

Lise Hertel- Lise is one of most inspiring and driven GPs I’ve ever met. She’s based in East London and also works for Newham CCG. It has crossed my mind on more than one occasion that I should probably move to her catchment area so I would never have to worry about having a bad GP-mental health experience ever again!

Lise is very forward thinking and a real believer in innovation and technology. As a service user, before I met people like Lise and other CCG mental health leads in London the idea of GPs commissioning mental health services scared the **** out of me because of my many awful experiences previously. However many of my concerns simply evaporated when I met people like Lise. I think, as much as there is a lot of risk, there is also a huge opportunity in GP led commissioning for mental health and will be watching closely to see what happens in the next few years.

Sarah Brennan– Sarah is the CEO of a charity you’ve all heard me rave about before: YoungMinds. I got involved in the organisation six years ago in January and I can honestly credit them with entirely turning my life around and giving me purpose.

Before YoungMinds I didn’t talk about my mental health offline, I didn’t wear short sleeves and I lived essentially in the mental health “closet”. YoungMinds helped me find my voice and gave me a platform to share my experiences, build my confidence and also introduced me to a group of young people who are essentially now an extension of my family.

I’d strongly recommend you:

Sign up to the YoungMinds VS campaign which has five areas in which we want to fight the pressure experienced by young people and create a mass movement for change.

Sign the YoungMinds petition to stop cuts to children and young people’s mental health services– you will be in good company as over 16,000 have already signed.

The event

I did my usual talk, very like the one I gave to the Kings Fund around what young people want from mental health services and also gave five examples of really great digital tools and services currently available including the amazing organisation I work for; BuddyApp..this will be the subject of a blog coming shortly.

We also heard from the awe inspiring work of Highfield Community Primary School in Sunderland who, through work with Place2Be have become a real beacon of hope to the children, parents and community they work with. As someone who had an awful time with mental illness at my own school growing up I really wish I had a Tardis so I could do my time again and attend this school which really prioritises the health and wellbeing of their pupils.

If you have any questions or ever want to pick my brains when it comes to technology and youth mental health please don’t hesitate to contact me, either through my twitter account or by email at kat@buddyapp.co.uk

WellHappy

The last month or so has been pretty hectic, they were always going to be with the restructure of the NHS and the VIK project at YoungMinds coming to an end after four years.

But in the last few weeks i have managed to get a lot done!

After launching the app first at the Healthcare Innovation Expo and then at City Hall i had a few days to finally relax and then bounced right back into work mode.

app launch

Launching the WellHappy app

I attended an iBehave meetup at Google Campus around using tech to increase condom usage in young men. Devika, the winner of the SexFactor2012 awards, came with me and together we worked together with a team of other people from tech, third sector and health backgrounds to come up with solutions. As someone who is much more familiar with the mental health side of the app we developed (plug: download here!) it was good to have an expert and friend with me.

You can watch a short video made about the event here.

I also made a short film for YouthNet and TheSite about mental health and employment. I’ve seen a sneak peek but i’m afraid it has not been released just yet. When it is i will post it so watch this space.

And two last little things i thought i would mention..

Firstly my app was featured in the Guardian today after they interviewed me recently. You can read it here.

Secondly, more for those in London, the WellHappy app will also be featured in the Evening Standard on Thursday so make sure to look out for it!

My WellHappy app launches at Expo

Myhealthlondon attend the Healthcare Innovation Expo

On March 13th and 14th 2013 members of the myhealthlondon team attended the Healthcare Innovation Expo at the Excel Centre in London. We were there to highlight our website, our dementia community and to launch the WellHappy app for young Londoners.

It was also a great opportunity to find out what else is happening in healthcare at the moment and we met lots of interesting new people including service users, clinicians and commissioners. We also bumped into Lord Victor Abedowale, the Chief Executive of Turning Point and had a chat about WellHappy and how some of Turning Point’s services for young people are included.

 

The Appzone and Health Apps Library

One of the main attractions at the Expo was the Appzone which you can see in the pictures below. It was here that the Health Apps Library was launched by the NHS Commissioning Board.

Over the two days of the expo ten brand new, never-before-seen apps were launched including our own.

It was a great opportunity not just in terms of the amazing platform to launch our own app but also to meet other developers, designers and teams involved in app development. We shared a lot of learning on the day and have had lots of interesting conversations since, showing that what happens at Expo doesn’t have to stay there, especially not with the invention of Twitter! It’s great to see so many clinicians embracing social media and using it to help their patients and provide information and insight into the medical world.

You can find out more about the App Zone and Health Apps Library by visiting the site here or by following @healthappslib on Twitter

 

Launching the WellHappy app

 

Kat Cormack, project manager, and Bruce Kynoch, Assistant Stakeholder and Marketing Manager launch the app.

Bruce and I gave a short presentation to the audience in the Appzone to officially launch the WellHappy app. This involved talking about the app, where it came from, whose ideas went into it, who helped us develop it and what it was like working on a project of this kind.

We also gave a quick demonstration to the audience on how to use the app and encouraged people to download it from Google Play or the Apple App Store.

Joining us were colleagues from LivingWellBrightLemon and Digital White, our design and development companies who have been so integral to the making and launching of the WellHappy app. It was great to have their support on the day and to have them around to answer any technical questions people might have.

People also had a chance to try out the app on tablets at the event and give us feedback right there and then. It was great to see people trying out the app, searching for services near them and then going to download it on their own phones! All the feedback we got was incredibly positive and it was good to hear clinicians say how useful even they would find an app like ours!

It just shows that WellHappy can be used by anyone, you don’t need to be a young person to find the information in it useful and if you work with young people, whether you are a youth worker, doctor, nurse or a teacher in London it is worth a look.

 

February Round Up Part 1

Right, time for a super quick round up of the first fortnight of February because it’s racing ahead and things are at risk of becoming a blur!

Week One

City Hall and the Peer Outreach Team

The month started off well with an update with our app team at City Hall where we talked over our plans for launching the app and website and the event we are planning.

 

Right Here Showcase at Wellcome Collection

I then literally ran part of the way to the Right Here Showcase and immediately ran into someone i have known on Twitter for some time for whom i have a great deal of respect; Mark Brown, the editor of One in Four.

I had been desperate to attend the showcase at the incredible Welcome Collection in Euston, not least because Right Here Newham would be there, co- authors of the State of Mind manifesto.

I also got to meet Simon Lawton-Smith, head of policy at the Mental Health Foundation and got to mention my app..a lot!

MedFacts and Innovation Labs

I had expected to just be a participant but at the last minute ended up speaking with Lucie Russell, Director of Campaigns and Policy at YoungMinds about our exciting new MedFacts project which you can read about here.

We also heard about some great new projects that are also being funded through Innovation Labs including Youth Net’s Madly in Love microsite. I will be facilitating a workshop about this at the The Site’s Leaders workshop in March.

We also heard about my friend Yvonne Collin’s new project from 16-25 which Keep the trust: A sympathetic online support, advice and informal training service that can be used to support adult non-health professionals, who have been identified by young people as influential or important people in their lives.

You can read more about Innovation Labs which is a project from Comic Relief, Nominet Trust and Right Here (Paul Hamlyn Foundation and Mental Health Foundation) here if you are interested.

App prototype

On Wednesday i actually got to hold a prototype version of the app i am developing in my hands for the first time!

It’s looking really good so far and i can’t wait to share more with you all!

Meeting the Peer Outreach Team

At the end of week one Devika and I were invited to the GLA’s Peer Outreach Team meeting where we got to tell them about the app we are working on. We got an amazing reception and the team were really excited to get involved, especially in our launch event. It was great to be able to bring the project to the team as they were involved in writing the State of Mind manifesto that started all of this. We were able to go to them and give them an answer to one of the manifesto aims, “tell us where we can go when we need help”.

When targeted advertising sucks: eating disorders, childhood bullies & dead friends on Facebook..

I just had a friend call me up to see if i knew that there was a large picture urging you to lose weight at the bottom of my last post on Eating Disorder Awareness Week. Now as far as i can see there isn’t one (but i am paranoid) so this leads me suggest it is our dear old enemy targeted advertising.

Unfortunately because my blog discusses things such as “anorexia” and “eating disorders” and other key words like this, I and many Eating Disorder websites and forums suffer from very inappropriate, triggering and potentially dangerous targeted advertising.

I see it all the time, well i used to before i got Ad Block, and it was horrible. Diet pill ads on Pro-recovery websites for people with eating disorders, babies toys advertised on bereavement forums. And there are just so many more examples out there.

And who out there hasn’t had Facebook suggest they befriend their old childhood bully, or wished a dead friend who just can’t bear to “remove” just yet a happy birthday or asked why you haven’t spoken to them recently. Unpleasant!

Targeted advertising is still  a shockingly blunt tool at times and the best way i’ve found to deal with the problem is..

Get rid of all the Ads and Pop-Ups altogether!

Adblock screen grab

Adblock

I did this awhile ago and i can barely remember what life was like before, i tend to recoil in horror at other people’s computer screens.

And it’s really easy i promise and a great way of avoiding triggers online, especially when we’re talking about Eating Disorders.

Just google Ad Block and download the one that is compatible with your browser.

Risk, resilience and young people online

A few weeks ago i attended two conferences on how young people use the internet and the risks and opportunities involved. Both were fantastic experiences and i not only enjoyed attending the conferences and hearing from young people and practitioners around the country but also presenting to such fantastic audiences.

Munch, Poke, Ping

The first conference, “Munch Poke Ping”, was hosted by Stephen Carrick-Davies and was something i had been looking forward to for a long time given that the subject matter was so intertwined with my own experiences and work. Originally i had asked Stephen, who i met through Katie Bacon of Online Youth Outreach, if i could attend. This led to me not only attending but also presenting at the conference about my own experiences of using the internet as a therapeutic tool, the positive power of peer support and the work i am doing currently with YoungMinds and MyHealthLondon.

The conference was attended by professionals working with children and young people from a variety of perspectives including teachers, support workers, youth workers, psychologists and others and the line up on the stage was just as varied as the audience itself.

Among the line up were speakers from PRUs including pupils, staff and a headteacher as well as Online Youth Outreach, Blackberry and Dr.Richard Graham who works with young people with technology addictions.

Although i am well versed in public speaking this event, for me, was a little daunting as it was my first foray into speaking as a professional and not just a “young person” or “service user” (the labels normally attributed to me). However as soon as i had a microphone in front of me i was fine! (Something that i imagine would shock those who went to school with me where i was known for being quiet and anything but happy about standing up in front of large groups of people).

After a somewhat dark session in the morning looking at grooming i spoke about the positive effect of the internet and how i believe it has helped me and helped me help others over the years. I did this through talking about my own experiences of mental illness and using and running support groups and forums online. I wanted to stress that not everything that happens on the internet is bad or untoward and that actually thousands of young people are helped every day by the peer support they receive online.

I have noticed that professionals, when considering young people and their internet use (especially “vulnerable” young people), find it very hard to see beyond one thing. Risk.

This means that projects are often slowed down or more likely not even considered, I hear a lot of fear and dismissal of service user involvement and participation let alone the concept of peer support within this.

My answer? Yes there are risks involved in going online, and yes some people are more “vulnerable” than others, however there is risk inherent in all areas of life. Risk is a fact of life and people will do “risky” things regardless, you may not be able to stop it but imagine the effect it would have if you could at least help manage and minimise it.

The ban and block  culture and our fear of the worst case scenario paralyses us and certainly does not move us forward.

 

And while bigger organisations are pondering all the worst case scenarios of having even, say, a pre-moderated, closed forum for service users, service users like me have been doing this for a decade now.

And i understand the fear that exists, believe me. I understand the fear of lawsuits and Daily Mail fodder but please bear in mind it can be done, and done well.

It’s not about trying to making risk obsolete, it’s about building resilience, educating young people and providing support; just check out what the Cybermentors do.

There are safeguarding measures that you can put in place, so many i wouldn’t know where to start..and do you know what? A lot of them are common sense! Like not giving out personal details online, just like you shouldn’t give them to a stranger in the street.

I’m sure most young people would tell you too that we don’t want to be wrapped in cotton wool and actually we need to learn by experience.

Personally i doubt exactly where i would be today without the peer support i have and currently still get online, i don’t imagine it would be a good place.

It has been a part of my life for around ten years now including before, during and after more conventional psychological help. Yes the help that i was receiving wasn’t from someone qualified in any paper-based way but i was fully aware of that going in. Not only that but the support was free and, unlike most mental health services, available 24 hours a day, 365 days a year. A stark contrast to most service provision which operate on a strictly 9-5 basis (with a few exceptions of course). No two year waiting lists in sight either..

I don’t blame the services. I understand the pressure they are under, it was pretty bad ten years ago and with the brutal cuts to the NHS things aren’t looking too good here on the ground right now.

Peer support should be encouraged, as a grass roots movement of sorts it already wields immense power and touches and enhances the lives of thousands. Just look at the hit counts on websites that are already doing it. And look at how successful ChildLine and Beat Bullying for great examples of how to reach out online.

It was amazing to be given a platform to speak about something that is so important to me both personally and professionally. It is the reason that with YoungMinds and MyHealthLondon i am developing an app and website to help young people who need support.

I met some incredibly interesting people throughout the day and the conversation continued both at the conference and on twitter (#mpp #munchpokeping).

The day after was a conference run by YoungMinds and ACAMH titled “Young people in the internet wilderness: a ticking time bomb?”,  my next post will be coming shortly!