2014: My yearly review

Well it’s been another whirlwind of a year, it seems to have flown by at breakneck speed and all of a sudden it’s the end of 2014 and I’m wondering what I’ve actually done this year.

For once it’s been no surprise that the year has flown, it’s been busy after all and I’ve done quite a lot. In fact this year I’ve not only started a new job but also moved house and been on the holiday of a lifetime. And that’s on top of my usual way more than 9-5 with some volunteering and a lot of campaigning thrown in for good measure.

So here’s a bit of an overview of my year which will be followed by a blog summing up some of my heroes of 2014.

January

2014 didn’t get off to the best start as I ran around the town I was living in and London desperately trying to get ahold of some medication. Being on long term medication feels like second nature after all the years and it does go along way to levelling me out and keeping me functioning but definitely has it’s downsides. Being on a relatively unusual medication and trying to get a GP appointment near Christmas and while working full time is not a good combination and I still manage to mess up my planning from time to time.

It did get considerably better thankfully, January was the month my Chrissy B appearance talking about growing up with mental health issues was aired.

chrissyb show

I also found time for my parent’s annual Burn’s Night party at the end of the month which was, as usual completely tartan and tasteless and a good way to celebrate the end of a very long month.

February

In February I finally got a chance to do Mental Health First Aid training with colleagues from NHS England. I think it’s great that my employer gave us all the chance to do this course and, upon competition, publicised the fact the office now had both physical and mental health first aiders. As many mental health issues surface or are even caused by work I’d love to see more workplaces taking this step. It was also an opportunity to bond with colleagues, many of whom opened up about their own experiences.

I also had the opportunity to co-facilitate a special online talk for the sadly now defunct MindFullUK during Eating Disorder Awareness Week. Having spent a few years now doing something similar for YouthNet on a regular basis it was interesting to try this method with a new group of young people.

March

As the NHS Expo was held in Manchester this year I had a great excuse to start the month of March with friends Rachael and Claire and their assortment of rats.

March was also pretty amazing in that I was given a regional award at the Vinspired Awards in the “Most Outstanding Social Entrepreneur” category for my work on the WellHappy app. I even got to attend a fancy awards ceremony at the 02 with my partner Ryan, parents and colleagues from myhealthlondon.

Boyfriend looking quite proud don't you think?

Boyfriend looking quite proud don’t you think?

April

In April I had the opportunity to speak to the Clinical Senate at the Kings Fund about young people, mental health and technology. Even though it’s a talk I’ve given so many times I could probably recite it in my sleep I received an inordinate amount of praise for this one. It got me thinking about the audiences I tend to speak to; usually a group of people who have signed up because they already have an insight and interest in what I’m speaking about, in other words, preaching to the converted. This is something that’s troubled me a lot this year; how do I reach a broader audience including some of the sceptics and naysayers?

I had the opportunity to learn a huge amount when I received Dementia Friends training from Katie Nichol and since then have, unfortunately, had the opportunity to put this learning into practice. I’d recommend the course to everyone as Dementia is something we will all be affected by at some point in our lives.

I also got a chance to attend the launch of the YoungMinds HedMeds project which had been something of a labour of love and personal interest for me. Along with a dear friend, Annabelle, we opened up the event and even preceded Jo Brand who very kindly called us a hard act to follow!

Some of us with Dr.Ranj

Some of us with Dr.Ranj

May

May was a big month that began with me presenting at the Patient Information Forum conference alongside Macmillan.

This was followed by an interview for my current role at BuddyApp..the beginning of big changes.

Then the biggest media appearance of my life, a live slot on Newsnight to talk about self harm with myself and Tanya Byron taking on the legendary Jeremy Paxman. I was approached by YoungMinds and asked if I would like to appear..only a few hours before broadcast. It was probably one of the most surreal moments of my life to be sat in the BBC green room and having a chat with Mr.Paxman.

Kat Cormack on Newsnight

I am very used to being on the receiving end of calls for help, queries, comments and young people generally asking for help and advice but this has increased by an order of magnitude since my appearance. As I may have mentioned these messages usually start with the same phrase, “I’m really sorry but I don’t know who else to talk to”. While I’m glad that I’m seen as approachable it does sadden me that young people still struggle to find people to trust and open up to and how few positive mental health role models that they can easily access there are.

June

In June I received some good news about my health when I learnt that, by some miracle, my bone density is still at a reasonable level, certainly better than I could have hoped for. Throughout the year I’ve had countless run ins with the medical world from a personal perspective, thankfully most of them positive.

June was also the month where I prepared myself for leaving the NHS and my lovely team at myhealthlondon. This was bittersweet, I was going on to a fantastic new role but leaving so much behind. Having worked in the NHS for 18 months I learnt so much about what happens “on the inside” and it gave me a really helpful perspective for when I’ve got my service user hat on and am wondering why things aren’t happening the way I had hoped in my treatment. I also met the most amazing people during my time working for the NHS, too many to name here, and thankfully I’ve managed to stay in contact with most of them.

myhealthlondon team

I’ve argued for a long time that the people who work for the NHS are some of the best people you will ever meet, their kindness, compassion and work ethic can be incredible but they are bound by a system that can be slow, bureaucratic and seemingly impossible to navigate so it’s no wonder things don’t always work.

Something that really fascinated me during this time was the way the NHS is perceived by both the general public and the media.

I feel as though people see the NHS as one big, monolithic organisation, especially when they are commenting on their experiences, “The NHS did this/didn’t do this” etc. This is a serious misunderstanding as the reality is the NHS is a jigsaw (and the pieces don’t necessarily fit well), made up of hundreds of different providers and a huge number of staff. In fact the NHS is the biggest employer in Europe and can be almost impossible to navigate..even if you work in it.

Throughout my time in the NHS we also noticed a change in the media’s attitude towards us. It got to the point where everyday there was a new story coming out, almost all negative and this has a huge effect on staff morale as you can imagine. And yet when we reached out to the media to get good news stories they were passed up time and time again. Bad news may sell more papers but it’s disingenuous and can be downright dangerous in painting an unrealistic picture that scares people off and causes them to lose faith in what is still an incredible British institution.

Obviously I have had a huge range of experiences having used NHS mental health services in particular on and off for a decade. Some have been great, some terrible but it’s been a spectrum and I can’t just focus on one end. I also look at countries like the USA and think about how terrifying it must be to have to pay so much for what I would argue is a basic human right; the right to life. I look at my friends who have poor or no insurance and gasp in horror at their medical bills festooned with zeros and wonder what my own care has cost and wonder where I would be if I had been born on that side of the pond.

July

On the 1st of July I started my new role at BuddyApp. This has been such a huge but positive move for me. I left one of the world’s largest organisations to go work at a start up with less staff that I could count on my fingers and of which I am the only female so that was quite a shock to the system.

I can honestly say that working at Buddy for the last six months has been a pleasure and I have particularly liked working in a small, dynamic team and the chance to work on the edges of the NHS, working directly with front line staff.

There have been challenges certainly, getting the NHS to buy into and embed something innovative is a slow process, definitely more of a marathon than a sprint, but it’s worth it. Because when it does work, we help patients get better and support clinicians in doing their job, what could be better?

So July was mainly spent settling in, meeting colleagues and clincians for the first time and a few events thrown in for good measure. My favourite was probably the NHS England Youth Forum’s “Celebrating Positive Youth Mental Health” event which I attended with Miranda Bunting whose blog you can read here.

August 

In August I took part in another Cormack family tradition; Cropredy festival. Big events can be a challenge for me especially when it comes to my anxiety but last year I decided that this would be the one weekend every year when the mental health issues would just have to sit in the backseat and sulk. This year I kept this resolution going and had a great time as you can probably tell from this picture of me and my brother.

Cropredy festival

Sadly August was somewhat marred by ongoing issues in our housing situation, most notably problems with our neighbours. Having moved into our flat two years previously and built a wonderful home for ourselves, my partner and I found the last year unbearably stressful due to issues next door which culminated in a police raid-a pretty traumatic experience for anyone.

For me a home should be somewhere that you feel safe and by the time we decided to get the hell out of dodge this was no longer the case. It has been a huge step and at times a bitter pill to swallow but, for the sake of our sanity, we left and moved in with my parents.

After 7 years away from my hometown it’s obviously taken time to adjust but I’m lucky that I still have some great friends in the area and above all a ridiculously supportive family who have taken in both myself, my partner and our ridiculous and noisy cat. It makes it easier knowing that this is a temporary solution and I’m grateful to have this time to settle, relax and rebuild.

September

September was dominated by the holiday of a lifetime as me and my family embarked on our Trans-Siberian Railway adventure. There’s definitely an entire blog post to be made out of this at some point considering we crossed China, Mongolia and Russia in 16 days and saw and experienced so much I don’t even know where to start. As someone who commutes 5 days a week as it is the idea of being on a train for the lion’s share of a fortnight initially didn’t appeal much but believe me the tube and this experience just don’t compare.

Rocking my YoungMinds Vs tshirt on the Great Wall of China

Rocking my YoungMinds Vs tshirt on the Great Wall of China

Some highlights include seeing the Terracotta Warriors, standing on the Great Wall of China in my YoungMinds Vs tshirt, drinking the water of Lake Baikal and being chased around China by people who had never seen redheads. I think my brother, all 6 foot of his bearded, tattooed and pierced self was a bit much for some of them. My brother was a bit bemused by this too, as well as many of the tshirt slogans we saw.

A confused James

Upon my return the rest of September was mostly spent given presentations at The Kings Fund, Westminster Briefing (The role of technologies: what young people want from services today) and attending the NHS AGM and NHS Citizen event where I may have caused a bit of a stir by wearing a protest t-shirt from 38degrees on stage with the NHS board of directors..oops..

October

In October I went to the launch event for the London Health Commission Better Health for London report which was held at the House of Lords and involved a lot of alcohol (how the other half live!).

The highlight of October and in fact one of the top events I took part in during 2014 was CLASP’s Walking Out of Darkness event. Over 300 of us descended on London for a 10 mile walk to raise awareness and funds for mental health and in particular, suicide. We raised a staggering £30,000 and are already planning the next event, you can join us on May 16th and raise money for whichever mental health charity you choose.

claspwalk

I also became a trustee for CLASP and have had the pleasure of working with the CEO and founder of CLASP, Kenny Johnston.

November

November truly felt like conference season was underway with me speaking at both Health 2.0 and HANDI Health Apps during EHILive about Buddy app including my experiences of using Buddy in my own treatment.

I also filmed a short piece for Techforgood.tv which you can now see here.

On top of a lot of travelling during the month I also found time to attend the Social Enterprise UK Awards around the corner from our office in Old Street. It was great to do something fun with my colleague James Ryan and I loved the atmosphere, social entrepreneurs in the UK are a fairly close knit and very supportive bunch and I’ve really enjoyed entering this world in 2014.

Social Enterprise UK Awards

December

Far from winding down towards the end of the year it feels like there was even more going on than usual during December.

I gave a presentation at UCL to Clinical Psychology students about the pros and pitfalls of peer support and social media for people experiencing mental health issues. During this I was reunited with the fabulous Tanya Byron who I shared the screen with during my Newsnight appearance. I also had the chance to have a sneaky drink with the lovely Grace who I know from VIK days, I think the students were a bit surprised to see me in their bar after the talk but it was the last day of term so I blame getting caught up in the atmosphere!

I also sat down with young people from YoungMinds Vs project (the next and very exciting generation of activists, definitely worth checking out) and Norman Lamb to discuss youth mental health, you can find more information from our afternoon with the minister here in a great blog written by two of the young activists.

On a personal note the most touching experience I had this month was helping out one of my role models Monique-Amy Newton in her annual “Help the Homeless” event. Sadly I was only able to attend one evening but we gave out clothes, food and toiletries to a large number of people both on the streets and in hostels. Their gratitude for a bowl of soup or pair of gloves was humbling and really put my own life into perspective.

Helping the homeless at Christmas

TL; DR: Overall it’s been a whirlwind of the year. I’ve had some of my greatest experiences and biggest challenges. I’m very thankful to have some time off between now and 2015 when it all starts again. Hopefully onwards and upwards to better things.

Thank you so much for everyone who has supported me this year, it has meant the world. I’ve stayed in contact with some great people and met some truly inspirational movers and shakers in the health and social care world. It’s people like these that give me the courage to keep going, keep standing up for what I believe in and keep fighting the good fight.

A particular thank you to my family, the never ending support of Ryan Jackson and a particular thanks to two ladies who have had me both in tears of laughter this year, founder of Diabetics With Eating Disorders (DWED) Jacq Allan and Kat Pugh who runs the wonderful #EndTheWait campaign for earlier intervention in Eating Disorders. I’m very lucky to be surrounded by powerful, disruptive, caring female role models.

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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

What was your experience of transition?

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Hey everyone,

If you know me then you’ve probably heard me get up on my soapbox about the issue of transitioning between CAMHS and Adult mental health services. I wrote my dissertation on it (Growing up in the system: Making the transition from CAMHS to Adult Services, 2010) and have spent a lot of the last five years campaigning to improve this area of treatment.

NHS England, the body set up by the government to improve the health of everyone in England, has taken on the challenge of young people’s mental health transition – and is determined to improve it. Because I work for NHS England and have a keen interest in this area i have teamed up with Yvonne Anderson from CERNIS to gather your views and experiences.

When we talk about transition we mean the difficulties faced by young people trying to access mental health services after the age of 16/17. This often means a move from CAMHS (Child and Adolescent Mental Health Services) to Adult services. We know that this a big problem for a lot of young people as many struggle to get the help they need or fall through the “gap” between adolescent and adult services.

The ambition of NHS England is to place service users, patients and the public at the heart of everything they do and they have asked us to consult with you.

Tell us online by taking this short survey. 

Prefer to talk? Contact Yvonne at: y.anderson@cernis.co.uk   

Alternatively you can use your reader on this QR code and go straight to the survey via a mobile device or tablet

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Talking about mental health on the Chrissy B show

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So some of you may know that late last year i appeared on the Chrissy B Show to talk about mental health in a special program titled “A mental health issue doesn’t mean i’m crazy”. The show was broadcast in January and is now available on YouTube for everyone to watch.

I first met Chrissy at a great event held at Westminster University called “Living or Surviving”. Chrissy spoke about her experiences of struggling with Depression at University and how she now tries to help other people with her inspirational television program. We were joined by speakers including Paul Canonville who talked very movingly about his own experiences of mental illness in sport and Professor Damien Ridge who is a psychotherapist.

You can watch me talk about mental health, the WellHappy app and working for both YoungMinds and the NHS below. I’m not on for the whole thing but it’s worth watching the whole episode:

 

Acceptance speech perhaps?

It’s taken me awhile to put out this first blog of the year. After the literal and figurative madness that sums up the end of 2013 I for some reason naively thought January might be a bit quieter..how wrong I was!

Over the Christmas holidays I was surprised to discover I had been nominated for not one but two awards from Mentally Wealthy. I’m a long time reader of the site and previous iterations such as This Week In Mentalists and have a huge amount of respect for the bloggers involved so I was certainly not expecting to see my own name appear in the nominations!

I came runner up in This Week In Mentalists Award 2013 in “Campaigning” and the Twitter based
Twental Health Awards 2013  in “Professional Not Otherwise Specified”.

Clearly all those teenage years hidden behind a computer screen blogging, moderating and being on social media paid off!-I have of course pointed this out to my parents to show them I didn’t waste my teenage years online! It is still something I have to pinch myself over though. As someone who at points genuinely didn’t expect to see her 16th birthday let alone their 24th it amazes me how far I have come. I’ve said many times before that if I could go back and tell my 14 year old self what things would be like in a decade I would most likely laugh in my own face. I am proof that it can and does get better even if “better” isn’t what you expected or planned.

Then, as if that wasn’t enough (and believe me i was taken aback as it was), Vinspired announced that I was a Regional Winner in their Vinspired National Awards as “Most Outstanding Social Entrepreneur” for my work on the WellHappy app.

This is a huge thing for both myself personally and for the WellHappy project and I am still so stunned that I’ve won.

So I guess I have to do some kind of acceptance speech? Don’t worry i’m not going to sit here for the next 10 pages and bore the pants off you but I do have some people that need to be thanked for their part in this.

YoungMinds

Firstly I need to thank YoungMinds which includes all the young people and staff I have been so fortunate to have in my life these past five years. It’s corny but it’s also fair to say that I could not have done this without you all and you deserve a lot of the credit for this award. Before I started volunteering with the charity I was very much in the mental health “closet”..now I am winning awards for speaking out about mental health & wellbeing. Participation helped me find my voice and campaigning gave me a platform and a purpose and I don’t dare think where I would be now without your support.

NHS

I also want to thank the NHS or more specifically my employers and colleagues within the NHS and in particular at myhealthlondon. When I was brought in to work in the NHS on secondment from YoungMinds for the WellHappy project it was a test, a trial run for 4 months. 15 months later I am still working with you after repeated contract extensions and a promotion. You took a chance on me, knowing full well all of my mental health history and that I was still technically a “young person”. It has been a pleasure having a job where I actually feel accepted and like I am able to do some good and make changes for the better.

And I would also like to say a big thank you to my wonderful friend Jenny Hills for nominating me.

And one last thank you to my long suffering boyfriend Ryan Jackson for putting up with me while i run around like, (once again both a literal & figurative) crazy lady. I certainly couldn’t have done half as much over the past 5 years without your support.

Anyway that is quite enough gushing for me for one day, i’m not sure it suits me! At this point I would probably trip over my feet on the way off stage.

And the thing is, this was only the start of the year and much has happened since then, but that is for another post.

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.