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!

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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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What are you doing next weekend?

Me proudly sporting my CLASP jacket
What are you all doing next weekend? I ask this because as you probably know next Friday 10th October is World Mental Health Day.
This year I’m doing something special and I would love it if you could join me, if not in person then in spirit, Walking Out of Darkness to raise awareness of mental health and in particular suicide.
The walk has been organised by CLASP, an amazing charity which has been started by a pioneering man named Kenny who has himself, been affected by suicide, having made an attempt a few years ago. Later this year they will be launching a helpline for people affected by suicide or suicidal thoughts including friends, families and carers which will link up with 111 and be an amazing resource for people across the UK.
The walk is 10 miles but don’t worry, if you don’t feel up for it you can still join us on the day and show your support. There will be stalls to browse with information too. You will be in good company with several thousand others including members of the NHS, supporters, charities, Department of Health, British Transport Police, MPs and celebrities. Not only that but some of my BuddyApp colleagues will be joining me and we will have a Buddy stall on the day.
Sign up here for just £10. If you use the code “Kat10” the money will go to the charity of my choice, DWED.
You can also sponsor me directly, I’m raising money for the charity DWED (Diabetics With Eating Disorders), a charity close to my heart. Type 1 Diabetes with a co-morbid Eating Disorder is a little know, much understood condition although we do know that females who are type 1 have twice the risk of developing Anorexia or Bulimia as their peers and as many as 40% of 15-30 year olds regularly omit insulin.
Every little bit helps, so please donate a couple of pounds or share with others.
If you can’t join us please do tweet your support using the hashtag #WalkingOutOfDarkness and encourage your friends, family and colleagues to do the same

Join me Walking Out of Darkness

Over the years i’ve watched many friends take part in fundraising events like Race For Life. I’ve always been so proud of their achievements and amazed by the scale of the events and the energy that surrounds them.

And yet it has always saddened me that there didn’t seem to be anything on a similar scale specifically for mental health. Sure you can take part in a thousand different types of marathons, triathlons or even do a skydive and support individual charities. I thought maybe wanting an event dedicated to this issue was a case of having eyes bigger than my stomach and being too ambitious and did not hold my breath waiting for one.

So, last year, when I first heard about CLASP charity and their planned Walking Out of Darkness event in London next month I was very intrigued.

clasp

A few weeks ago I had the genuine pleasure to speak to the man who started it all, CLASP CEO Kenny Johnston. Like me, Kenny is very open about his own experience of mental health issues and it was these experiences that led him to setting up CLASP and the CLASP helpline which will launch later this year.

Watch Kenny in this short video:

The walk will be held on July 19th starting at 8pm and there is a 5, 10 and 25 mile route depending on what you feel capable of. Personally, and sadly I will only be able to do the 5 mile walk at most this year. I am attempting, for once in my life, to be mindful of my limitations and practice some self care.

I will be joined by thousands of others including NHS England, the Department of Health, British Transport Police, Charities, Organisations, MPs and celebrities. The event is gathering huge momentum even before it has begun and I strongly recommend you follow on twitter and follow the hashtag #WalkingOutOfDarkness.

Mention me and get a discount!

I hope you will be joining me on the walk. If you do wish to register you can get a £10.00 discount by using the code “Kat10”. All money donated using this code will given to one of my favourite mental health charities, DWED, who do incredible work on a shoestring.

About Diabetics With Eating Disorders (DWED)

DWED supports people with Type 1 Diabetes and Eating Disorders and their carers in numerous ways including online, by phone and face to face. They also provide advocacy support for service users and training for professionals. I have worked with them recently alongside NHS England, myhealthlondon, London Strategic Clinical Networks and the WellHappy App on a project to raise awareness of Type 1 Eating Disorders and improve outcomes.

Why participation is important to individuals and organisations: an insider’s view

This is a speech i am giving at an NHS England meeting:

Everyone’s business: Patient engagement, experience and involvement

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My name is Kat and i am the project manager for myhealtlondon’s WellHappy app for young people in the capital.

I’m also a service user and i’ve been using mental health services for about a decade now. When i was 19 i was lucky enough to become involved with the charity YoungMinds as part of their participation project for young service users; the VIK Project. That project has sadly ended now but was a huge part of my life for 4 years.

I came to this event knowing that i would be the only service user (at least openly) and the youngest person here so i’m here to talk to you about a couple of things from my own experiences, especially in relation to youth services & mental health although a lot of what i have to say has much wider applications.

And as much as i am very thankful for the invitation to speak today it doesn’t sit right for me. I’m not special and i am not representative of the areas i campaign around, especially the somewhat catch all group of “young people”. After all how can one person be?

I consider myself to be incredibly privileged to stand here in front of you today and share my experiences with you. But i kind of wish it always me on the stage!

And believe me i’m not the only one out there with an opinion, with things to say. But unfortunately there are still a huge number of barriers in the way of young people actively participating in not only the services they use but their own health.

Some of these barriers are tangible, things like running participation groups at times where young people are not able to attend, but a lot of them are more insidious, they are part of a culture which i believe needs to change.

It’s a problem that is widespread and not just applicable to health services. Young people are all too often  dismissed as being apathetic and disengaged with nothing worth saying. We’re told our exams are getting easier and we’re getting stupider and fatter.

And the media is full of awful depictions of the worst side of a very small number of young people. I work with a lot of young people from Tottenham and the surrounding area who live in the areas worst affected by the riots a few years ago. They speak of their despair at the way young people were targeted by the media. Never mind that some of the looters and vandals were grown adults, there was even a teacher in there! All the focus was on them.

In fact a whopping 76% of all press coverage on young people is negative and a shocking 39% of adults cannot not think of a single positive thing that young people do.

Not surprising then that surveys have shown that 1 in 4 adults would cross the street to avoid young people

And if you were a young person why would you want to engage with people who had so clearly written you off before they had even met you?

This is a dangerous state of affairs when we know how incredibly important prevention and early intervention are. But would you trust official figures like politicians and police or even feel comfortable talking to your GP expecting to meet this level of prejudice?

And how as a clinician or a service are you supposed to engage with people who are actively trying to avoid you because of this? It creates a very damaging “us” and “them” culture and shuts down potential dialogues.

It becomes very easy to only engage with the loudest, most active young people who come to you. Easy to ignore the hard to reach groups, for example young men and the BME community are hugely underrepresented in mental health participation circles. And the problem with this is, yes it’s great that you’re engaging service users, but you’re still only consulting a tiny and not representative group. The more people you consult the more points of view you have and the more likely that changes will be made for the common good and not just the perceived good.

And is such a shame because participation can change lives, i’m a perfect example.

Being a young person and a service user can often leave you feeling a number of less than optimistic things about yourself. You can feel like you don’t have a voice and that your opinion doesn’t matter and will never be heard.

It’s easy to become just another statistic and to begin to feel the way that you are treated by professionals who often label you as “manipulative”, “attention seeking” or a hopeless case.

You can feel like you have no right or ability to make even the most basic decisions about your care and your life in general just because you are young and have mental health problems and this is nonsense.

And it can also be dangerous self-prophesising. If there is no point why bother trying?

I know that before i joined VIK i definitely felt like this. I wanted to make a difference and to help change the mental health system so others wouldn’t have to go through some of the things i have and would have a better standard of care but i didn’t have the faintest idea as to how to go about this and didn’t think it was possible, especially not as an individual.

After all where do you start? How do you get people to listen to you and who should be listening when the government and the NHS are so vast and feel so faceless?

But then due to pure chance i became involved in YoungMinds VIK panel and things started to change for me. It took time, it took at least 6 months before i really understood what participation was and it came as a real surprise to me! I’m allowed to get a second opinion? I’m allowed to ask, i don’t just have to sit there and have things like therapy or medication done to me and i can be an active participant in my care! Let alone actively participation in the design and delivery of services. Or being able to give feedback on government policy that directly affects me.

Unfortunately this all happened long after i had left CAMHS. Funnily enough the reason i left CAMHS was not because i was in any way “better” or “recovered” but because i was jaded, disengaged and no longer saw the point. All dialogue between myself and the team had completely broken down.

Oh and just to point out during my time in CAMHS the closest i got to experiencing participation was once being asked to fill in a small form about how i would like the waiting room to look. This in fact is quite an ongoing annoyance..if i had a pound for everytime i had been asked about a waiting room i would probably not have to work!

So just so you know for the future waiting room decor is not participation, it is tokenism at best!

Thankfully though when i went into adult services i had all this new knowledge at my fingertips and it has, overall been a much better experience. I have the confidence and the knowledge to know when something isn’t right and can now stand up for myself-for me this is HUGE. Not only that i can engage with professionals, we can have honest discussions and make shared decisions. It feels so much better to work in partnership and not just be prescribed to!

You would not recognise me if you met me 5 or 6 years ago. I could barely leave the house, i couldn’t put my hand up in class, i was petrified of public speaking. I had no self worth whatsoever.

YoungMinds have provided me and the other VIKs with some absolutely incredibly opportunities. While i was in CAMHS i never thought that i would, for example, meet politicians, go to government meetings or be able to get my voice heard through national publications and radio programs.

But through VIK all of these things and many others have been possible and it is hugely encouraging and empowering. When we speak at conferences we are often approached afterwards by professionals who are completely taken aback by our ability to present ourselves and our experiences in an eloquent, coherent manner and talk with great passion about what we feel should be done to change the system.

I think this shows that even professionals who deal with young people on a daily basis are often unaware that we are unable to express ourselves or know what is best for us. That is why being a part of VIK was amazing. It gave us a chance to prove people wrong and hopefully change some people’s minds about what it means to be a young service user and what we are capable of.

When i ask young people i come into contact with what they think their rights are in relation to their healthcare, especially mental health care, i get laughed at. In fact most of them don’t even know what their human rights are.

“We have rights?”.

Imagine if we got things right this time. If the experiences i have been lucky enough to have were common practice.  Too often participation is seen by services as a nice add on, a favour to their clientele, it’s an after thought if anything is left in the budget.

Imagine if participation was just part of the process, if we spoke about it at schools and explained why it is important. If we actually taught kids their rights. If we taught them about the services that they could use if they needed it instead of the current system when you only find these things out too late..when you are stuck in the middle of services. It’s a scary place to be when you don’t know what’s happening.

My parents have always said that the worst thing was that they had no knowledge of the mental health system before i got ill. They too felt thrown in the deep end. Unsure of what was happening, what was meant to be happening and what they were allowed to do or say. I’m so glad that because of my experiences, if my kids ever have issues, i will not only know what to do but have the confidence to help them and fight for them if i have to.

If we get things right we could have a group of people, the next generation in fact, who  are health-literate and havethe skills and the support to be empowered, confident enough to take control of their health and their role in services and the desire to change things to make them better instead of the current model i see which is enduring and then escaping services never to return or even think about them again.

It’s a big ask i know but i also know it would be worth it for everyone.

And that is why i make it a priority in all the work that i do to involve as many young people as i can. I want to give as many of them as much of the experience of participation as i did that i can so that they can grow, flourish even and help pave the way for a better, healthier future for everyone.

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.

 

Week Two: Eating Disorders Awareness Week

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The second week of February, well from the 11th to today, the 17th of February it has been the annual Eating Disorders Awareness Week.

Every year i am blown away by the amount of support and awareness raising that goes on during this week, especially by Beat the eating disorders charity.

And this year was no different with both their “Sock it to Eating Disorders” and “Everybody knows somebody” campaigns which both received a lot of high profile support and attention.

Some things i absolutely must mention..

My wonderful friend and London VIR for YoungMinds Amy-Louise posted this inspirational video. Amy-Louise reached out to the online community and asked them to send her their videos and the result is both heartwarming and heart breaking in equal measures.

You can also visit her blog and Youtube channel to see more of the wonderful work that she does.

There were also some amazing blogs this week on YoungMinds website from young people and their families on the themes of Eating Disorders and Recovery. Please remember that all blogs of this nature can be triggering if you are struggling and should be watched only if you are feeling up to it.

And i know this is a bit of a selfish and silly one but i was incredibly excited that i was re-tweeted by Stephen Fry even if it did involve airing his dirty laundry!:

Stephen Fry retweets WellHappy!

Stephen Fry retweets WellHappy!

 

There was also a groundbreaking debate on Eating Disorders held in Parliament on Friday and chaired by Caroline Noakes MP, Head of the APPG on Body Image and a vocal campaigner for change and awareness. I have started talking to her over Twitter and am hoping to meet with her soon.

I will be posting more specifically about this debate in a blog coming soon. Watch this space!

Remember, it’s almost Eating Disorders Awareness Week!

beat eating disorders

Tomorrow is the start of the annual Eating Disorders Awareness Week. I have been looking forward to it because i know what an amazing job people like the Beat Ambassadors  taking the stage they have been given to tell us their stories, to show their campaigns, raise awareness and fight some of the terrible misconceptions about these dangerous disorders.

This year the leading UK Eating Disorder charity Beat are asking us to “Sock it to Eating Disorders!” and i know i will be!

To find out how you can get involved check out Beats helpful page here where you can find out more on how to celebrate and raise money for a great cause. You can also talk to other sufferers and carers on their great message boards and even attend events which you can find here.

You can also Follow Beat on Twitter  

As well as these people on Twitter:

Me: I will be tweeting a lot during EDAW13 mostly with my service user hat on here

The big London mental health project i am currently working on which will be tweeting about London Eating Disorder Services, resources and more here :

The absolutely wonderful VIK Project:

And of course  YoungMindsUK