I’m not brave

“Thank you for talking, you are so brave”

I talk about my mental health very openly. In fact if you’re reading this blog you may well have seen me give a talk, workshop or presentation or even on television talking about some issue or concept in mental health; usually weaving in some of my own experiences. I probably look like a natural, as though i’ve been an open book my whole life.

All in all it has taken me 19 years to get to this point. I’ve been ill or at least symptomatic since the age of six. It took me eight years to get a diagnosis, another five until I started opening up and another two  until I really made my peace with my experiences.

For the last six years, since the age of 19 I have had the incredible pleasure and honour of being involved with the mental health charity YoungMinds. Before then I was so far in the mental health closet you could saw I was in Narnia. They not only helped me find my voice but helped me to nurture it and form a narrative around my experiences.

The effect has been profound. During my school years I was completely unable to speak in front of groups of people and used to feign sickness for weeks to avoid the annual public speaking contest. The thought alone of standing up there with nothing but a sheet of notes to shield me caused incredible levels of nausea and anxiety leaving me all but paralysed. I certainly never, ever expected to stand in front of hundreds. In fact I doubt my teachers would recognise me now.

At this point I cannot comprehend what my life would have been like without these monumental changes but I do know I would have had a poorer life. I have spoken on record to such diverse organisations and people as the BBC, MTV, Royal Societies, politicians (including a PM) and many more and gained so much by letting go of my fears.

After every talk I give, people approach me. Some will put their hands up during Q&A sessions and speak openly in front of the group, many though will take me to one side after and quietly speak.

Without fail, at every single speech people do two things:

One in Four? More like four in four

1) They open up about their own run-ins with mental ill health.

Sometimes it is their own experience, something they have never disclosed before. Often it is about a friend or family member and they come to me in sadness or desperation. I have developed an uncanny ability to work out, during a talk, who will approach me afterwards.

This has taught me one simple thing; we are all affected by mental health and illness. We talk about the 1 in 4 statistic but that doesn’t sit well for me. We ALL have mental health just like we all have physically health; we sit on different points of the same spectrum. Which suggests to me that mental illness affects 4 in 4 of us..but only 1 in 4 will admit it. And perhaps even that statistic is too high.

2) “You are so brave” I’m not so sure

Secondly, I am told, almost like clockwork that I am “brave”

Now before I start unpicking this one let me say; I get it and I appreciate the sentiment. But it makes me sad.

I think what people see is a very young looking girl (more 15 than 25) standing up and opening up in a really honest way. Yes I am those things but I am much more. I have been standing up and telling my story repeatedly for six years and at this point I feel no fear, no misapprehension about what I do.

I am lucky because I do not need to be brave any more. Just myself.

It is brave to stand up and say something for the first time, to give words to wooly concepts and feelings. It is brave to stand up when you don’t know what the reaction to your words will be.

But what I have learnt, much to my early surprise, is that opening up about mental illness does not automatically mean opening yourself up to criticism and abuse. In fact 99% of the reaction I get is overwhelmingly positive and empathetic. So in fact all I am opening myself up to are compliments and smiles-that suddenly doesn’t seem too brave does it?

I am seen as brave for standing up and speaking when others don’t. And that is a damn shame. If you had my experiences you would see being open is a wonderful gift to be shared. Like I said in my blog about running up against anti-psychiatry Scientologists:

If I won’t stand up, someone who has been ill for a lifetime, used services for a decade and has worked for the NHS and mental health charities, how can I expect anyone else too?

I don’t want to be seen as brave but as a role model. I don’t want to be the only person on a podium or the token service user. I want us to stand up together, regardless of whether we are students, doctors, psychiatrists or siblings and talk.

I know it’s not very British but it shouldn’t be seen as brave either.

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 LivingWell, BrightLemon 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.

 

A quick update

I thought i should probably make a quick update about some of the exciting new things i am doing that i haven’t shared with you all yet.

Firstly i have finally left my job in order to go freelance with my Mental Health and Social Media work. I will still be a VIK with YoungMinds as well as a young advisor for the Royal College of Psychiatrists and a media and communications volunteer with North Essex Foundation Partnership Trust.

I will now also be working with Katie Bacon, founder of Online Youth Outreach which is something i cannot wait to get properly started with. Over the next few months I will be facilitating and speaking at a few events  which i will talk about more closer to the time.

Alongside all these things i will also be reunited with Bill Badham and his wonderful team at Practical Participation, working with Puzzled Out (the CAMHS mapping service) and hopefully with a few universities, advising on course content and even lecturing as a service user.

Mental health, GPs and young people

This morning i called up my doctor’s surgery to get a much needed appointment with a GP. For most this is a task that needs little if any thought. For me however it can be a potential minefield.

What’s more when i called up i was informed that my appointment would be with a new doctor, not one that i had met before or had any experience of. Accepting the appointment, was for me, a pretty big gamble.

I’ll explain. I have had mental health problems to some level or another for most of my life and i have been using mental health services for coming up to nine years now. I have almost endless experience of all sorts of medical professionals from psychiatrists to nurses and everything in between.

Obviously as a UK resident my first port of call when it comes to health (both physical and mental) is my GP. GPs often feel like the gatekeepers to other services and organisations and i have always felt that it is vital to have a good working relationship with them.

However when it comes to mental health nothing is ever so simple. I would like to say that i have had predominantly good experiences but this is not the case.

I think the problem comes, to some extent from a combination of two factors: the fact that this is mental health and that i am a young person. Apparently these two things mean it is often harder for me not only to access the treatment i need but also to have problems recognised at all.

I wish i could say that i was alone in this experience but unfortunately that is far from the truth. I have spoken to countless other service users young and old about their experiences of GPs and they very much mirror my own. I wish i could tell you that young people weren’t told that their conditions were “a phase”/hormones/attention seeking/manipulative. Eating disorders are seen as a fad or a diet gone to far, depression dismissed. And if you were told this after opening up about something deeply personal that you may have not ever shared before, do you think you would go back or try and get a second opinion? I know i would think twice. I know it is a hard fact to stomach that some children and young people suffer from severe mental health problems but we can’t ignore or it deny these people help because it makes us uncomfortable.

All the evidence shows that a huge proportion of adults that have a mental health condition report symptoms starting in adolescence and the power of early intervention, as shown especially in EIiP (Early Intervention in Psychosis) services, cannot be denied.

And yet we still struggle to get our voices heard and to be taken seriously.

GPs need training not only in how to spot the warning signs of mental distress in children and young people but also need to be educated on atypical presentations (we don’t all neatly fit into diagnostic boxes) and a more holistic and open approach to young people.

Luckily today was a positive experience. In spite of all my anxiety in the run up to the appointment i was seen by a doctor that listened to me, took my opinions and preferences into account and made me feel relaxed.
It is just unfortunate that i can’t say that more often.

VIKs attend an international conference

Late last year the VIK Project was approach by Careif (The Centre for Applied Research and Evaluation International Foundation). We were asked if we wanted to appear at an international conference on Cultural Psychiatry in London. Of course, never ones to turn down a challenge, we said yes immediately and began working on what we thought was important to present; especially knowing that we are usually one of very few if not the only service user voice at large conferences. It was exciting to be offered the opportunity to present at a conference of this size and to delegates from literally all over the world and we did not want to disappoint.

So several months including a couple of VIK days were spent carefully planning with ideas coming left, right and centre from a large steering group of VIKs and VIRs.

And then it came time for the conference itself..

3^rd World Cultural Congress of Cultural Psychiatry
10-11^th March 2012
Queen Mary, University of London

Saturday

Firstly two VIKs including myself attended a symposia. Here several pieces of research from around the world were presented to us and we had to give our opinions and comments on the issues put forward. Luckily we had been given abstracts of the papers presented before the conference as there were some amazing pieces of research and a lot to get our head around.

We decided early on in the planning stages that as we had been given something akin to free reign over what we did and presented at the conference we decided we would trial an idea that had been buzzing around the group for awhile; a chill out zone.

Our chill out zone was located away from all the noise and commotion of the main conference and was a room, run by young people, for visitors to the conference to escape to for a cup of tea, some crafts and a conversation with young people about mental health services and psychiatry.  As one of our VIKs said the chill out room is meant to be “a place of fun and relaxation whilst enabling us to share first hand our own personal experience and journeys of living with mental illness”.

We also met some very interesting people including an author; Bhanu Kapil, who gave us a signed copy of her new book “Schizophrene”.

http://www.amazon.co.uk/Schizophrene-Bhanu-Kapil/dp/0984459863/ref=sr_1_1?s=books&ie=UTF8&qid=1336067254&sr=1-1

Bhanu Kapil with VIKs in our chill out room

Sunday

On Sunday we were back again although unfortunately i was not able to attend. Once again a team of VIKs ran a chill out zone and they also delivered a workshop on Participation for a small group of international delegates.

The workshop involved personal stories of young people’s experiences of participation or more often the lack of it in youth mental health services.

After sharing some of our experiences the professionals attending the workshop were asked to discuss what barriers young people might face in getting involved and participating.

We then went on to give a short “Participation 101” where we explained the YoungMinds 3D Participation model; a model of practice developed by young people for young people along with several other tips, thoughts and discussion points.

Overall we have received a huge amount of positive feedback about every aspect of our involvement in this event and i think i can safely say on behalf of all the VIKs that not only attended the conference but helped in the build up with, designing, developing, running and supporting us.

I will leave you with the same words that Annabelle, one of our VIKs, gave the delegates during the closing ceremony:

“I think I can speak on behalf of everyone that has represented Young Minds this weekend, when I say that if we can alter the life and care of one person somewhere in the world in a positive way by our involvement in shaping services and attitudes, by standing up and speaking out then it’s worth it. The VIK participation project has been for many of us a silver lining to the very black cloud that is mental illness; and I’m delighted to say on behalf of VIK thank you for inviting us, and on behalf of young people across the world thank you for showing you care”.