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.

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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

Confession time: the first time i asked for help

The World in Mentalists this week featured a blog about first experiences (or first contact!) seeking help for a mental health problem.

Reading that blog which you can find here i suddenly found myself transported back almost ten years ago now to my own first time. The first time i admitted that i needed help and couldn’t do it on my own any more.

This first experience is, for many, a huge deal. It is the first time they have ever admitted it and let their carefully crafted mask fall and from personal experience it feels like a confessional.

Forgive me doctor but something is really not right in my head.

The first time i ever admitted out loud that something was not all right was  definitely a shatter point in my existence. My memories of it are vivid even now and i look back and have so many things i wish i could say to that scared girl.

I was fourteen when i first went to my GP and asked for help. I had been ill for a fairly long time by this point, having already fallen quite deep down the rabbit hole of Depression, Anorexia, Anxiety and OCD.

These were not conditions that had come about suddenly, they had grown up with me, slowly and silently. I had always been an anxious child and i can remember very ritualised behaviour and obsessive compulsive symptoms dating back to the age of 6 but it had always seemed very normal and very manageable to me.

In fact i remember thinking that everyone did the strange rituals i did and thought the way i did, we never talk about it because everyone does it i reasoned to myself.

When i was thirteen it began to manifest more strongly and i started retreating into myself. I had always been quiet and i had just started the “terrible teens” so it was not really noticed, not even by me, that i had started withdrawing from the world.

I had a lot of friends online and they were the ones that eventually managed to convince me to tell people “IRL” (in real life) and that what i was feeling was not normal.

Up to this point i had told almost no one that actually knew me, it was something i kept incredibly close to my chest and that not even family or close friends knew about.

I finally managed to work up the courage to tell my parents. Almost. I left them a note that said i needed to go to the doctor because something wasn’t right. This may seem cowardly but at this point i was literally unable to get the words out of my mouth.

They were shocked and scared, it was completely out of the blue, so good i had got at hiding that anything was wrong.

I wrote a four page letter to my doctor on my computer and printed it out because i was terrified of saying anything and i knew i would sabotage it and end up saying that nothing was really wrong, i had made a mistake.

I honestly did not know what to expect or what would happen after i handed over those pieces of paper. Mental health was not talked about ten years ago. We now have wonderful campaigns like Time to Change and politicians talking about their experiences of mental illness but when i was 14 this just did not happen.

There certainly wasn’t anything about mental health or illness at school. People made jokes about “nutters” and “men in white coats” sure but there was deafening silence from the curriculum.

I was scared that i was going to be sent straight to a psychiatric hospital right there and then on the spot. I was scared i would be medicated up to my eye balls.

Luckily this was not the case!

The doctor i saw was young and very newly qualified. She admitted from the very beginning that she knew very little about mental illness or the conditions i was suffering from and had never had a patient like me but that she would do everything in her power to find out more and help.

She was incredibly kind and compassionate and refused to give me medication, saying instead that i would have a referral to the local CAMHS team for an assessment. I remember how wonderful she was, so non judgemental and what’s more she believed me and what i was going through.

Through the weeks she helped me understand that medically i was not well and i needed help, she helped me talk to my parents and together we learnt more about my illness.

Later on she left her position at my surgery and went elsewhere, however because of the way she had responded to me i felt optimistic about my treatment from this point onwards.

I hear about some people’s first experiences and think back to some of my own later run ins with professionals i feel terrible thinking about it. It is so important that your first time “coming out” as it were about a mental health problem is not a negative one. I know so many people that tried once and it took them years afterwards to try again because their first experience had been so traumatic.

There is still a real gap that needs to be dealt with in terms of good and actual patient experience is and the education of GPs when it comes to mental health, especially in young people.

But i hope that through continuing work by organisations like YoungMinds we can get there. Everyone deserves to be taken seriously and treated with respect.

And if you want to help support mental health education in schools check out my friend Charlotte’s amazing AcSEED project.

A little teaser..

My lovely readers, it is only Wednesday and i am already exhausted after two days of running around speaking at conferences and presenting to over 300 delegates. 

I will be blogging about these events of course but in the meantime a little teaser.

This is the conference report from the conference i attended on Tuesday: “Young People in the Internet Wilderness: a psychological time-bomb?”: Dangers and Opportunities of the Internet by YoungMinds.where you can read a little bit about why i was there and about the work of my wonderful VIK colleagues.

 

 

Never a dull moment in mental health..

Not that i ever have anything that resembles a “quiet” week but next week is looking especially busy so i thought i would give you a little warning as to what’s coming up. And first a bit about what i have been up to so far this week.

This week:

On Tuesday I was lucky enough to meet up with Wedge and Jules from LifeSIGNS at the Tate Modern to talk about blogging, mental health and online peer support. As a long time user of their message boards and a big fan of their work it is really exciting to be working with them. 

I visited the counselling service Open Door in North London to talk about the app i’m working on and the work that they do with young people. One of my favourite parts of the project i am working on is that i am lucky enough to go and visit these incredible grassroots organisations in person and really get a feel for how they work.

And now next week..

On Monday i will be speaking at Munch, Poke Ping, a national conference about social media and vulnerable young people. 

This is followed by a conference on Tuesday run by YoungMinds and the Association for Child and Adolescent Mental Health “Young People in the Internet Wilderness: A Psychological Time Bomb?” which will look at the opportunities and threats faced by young people in the digital age.

At both conferences i will be talking both about my own experiences of using the internet as a therapeutic tool and the work that i am now doing with YoungMinds and MyHealthLondon, developing an app for young people living in London to help them find help when they need it.

This is followed on the Saturday by the last VIK day of the year, i can’t believe how fast this year has flown by and how much we have achieved as a project!

Really looking forward to both of the events, both presenting and listening to the fascinating speakers that are lined up for both days. I will be blogging about both of these events so watch this space!

Our first focus group

On Friday i ran the first focus group with young people for our Wellbeing app for young Londoners. Although we didn’t have as many people as we expected the day was still a great success and we were inundated with suggestions and ideas.

We split the group into three sections to cover three of the biggest areas we identified previously: the look and feel of the app & website, the content it needs to have and how to launch it so that it reaches as many young people as possible.

We had some really innovative ideas for all areas and are currently feeding back young people’s responses to our designers and developers: we want to make sure that young people are not just given an opportunity to express their ideas but that those ideas are taken seriously, taken on board and made into reality.

The focus group was a great pilot and we will be running more over the next few months both on and offline so if you would like to find out more or even get involved please don’t hesitate to contact me at Katherine.Cormack@london.nhs.uk