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

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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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The state of young people’s mental health

To coincide with World Mental Health Day, guest blogger, young person and professional Kat Cormack looks at the state of young people’s mental health in 2013 and examines access to treatment, perception of people with mental health issues and stigma.

So here we are on the week of World Mental Health Day 2013 and I can’t believe a year has passed already since the last one.

It’s also ten years since I started receiving mental health treatment and so now seems to me like a good time to take stock and see what is currently happening in children and young people’s mental health. I guess that makes this my “State of the mental health nation” speech.

Mental health, illness and everything in between is a massive area and I could talk to you about everything from ADHD to Z-drugs but then this would be less blog and more book: or five! So I’m going to focus on a few areas that I feel make for good indicators to assess the health of our mental health and services.

The last 10 years have been huge for me, seeing me going from a severely ill 14-year-old to a moderately ill but high functioning adult. In this time I have gone from being a student at school using CAMHS to someone who now works for the NHS and with YoungMinds (and occasionally uses Adult Mental Health Services).

I have also spent five years working with YoungMinds, the Royal College of Psychiatrists as well as completing an undergraduate degree in Psychology where my dissertation was based on young people’s experiences of transitions from CAMHS to adult services. This puts me in a somewhat unique situation (not unlike a tightrope at times) of being a professional, a “young person” and a service user all at once.

So where do we begin? I think two of the most salient indicators are access to treatment and perception of people with mental health issues. These are the two areas I will be covering in this blog.

Access to treatment

Asking for help with a mental health problem is daunting. I’m not going to lie. It takes courage to admit that things aren’t right and that you’re struggling and I commend everyone who takes this first step.

For most young people the first port of call is their GP, it was for me too. Ten years ago when I first asked for help my GP (newly qualified) had no idea about mental health having received no real training in the area. At the time I didn’t think much of it but looking back that’s pretty shocking given that such a high percentage of GP visits are related to mental health.

Fast forward 10 years and some progress has been made and I have met a lot of GPs who are very much up to speed with mental health and act accordingly. However many still have limited training and understanding and I have had my fair share of run-ins with GPs who are ignorant to the point of negligence. This needs to change. We cannot keep telling young people just to “talk to a teacher or your doctor” if they’re worried if we don’t then train these professionals to respond appropriately.

After seeing the GP for many young people they are referred to CAMHS. However we know that waiting lists are still unacceptably long with many young people waiting months (or even up to 18 months) for the support they so desperately need. This is not acceptable.

There is much talk of bringing about “parity of esteem”, to put it simply this means we need to start treating mental health as seriously as we treat physical health and that includes holding services to account to the same waiting times. You wouldn’t have to wait 18 months to get a broken leg fixed!

Another big problem we face in 2013 is the increasingly savage cuts to health and social care. Through an FOI request YoungMinds found that two thirds of local authorities have cut their budgets for children and young people’s mental health services since the coalition government came to power in 2010. One service suffered cuts of 41%. (Source: http://www.bbc.co.uk/newsbeat/21737173)

At a time when even more children and young people are experiencing mental health problems the last thing we can afford to do is cut services. Children and young people are not immune to the effects of the recession which have lead to a surge in family breakdown, youth unemployment and stress for young people. And as Tier 3 services like children’s centers are closed the burden increasingly falls even more heavily on CAMHS which was struggling as it was 10 years ago when I first came into contact with them.

With three in every classroom affected by a mental health problem we are letting down too many children and young people.

This is why I am happy to hear that many schools are beginning to ask more organisations like the wonderful BodyGossip to come in and talk to their students. I’m also glad that there is a lot more talk of teaching children resilience and even screening for mental health issues from the age of 7.

Perception of mental illness

Another area that I have watched with interest over the last decade is the way mental illness is viewed and the stigma associated with it.

Thankfully I can say that we’re making some progress with this. When I was at school we never ever heard about mental illness. Now we have amazing campaigns like Time to Change’s Stand Up Kid, YoungMinds in Schools, Student Minds, The Acseed initiative and Mental Wealth.

But we still have a long way to go. I may now be very open about my mental health, something I definitely didn’t feel able to do 10 years ago, but I am part of a minority. I am lucky enough to have the support of my family, friends and importantly my employer. This has not always been the case and I have suffered discrimination in the workplace because of my health as have many thousands of others. We need to create an environment in our country where it is okay to talk about how we feel.

I think that the recent ASDA/Tesco “mental patient” costume scandal is a very good example of some of the stigma we still face in society. Although having said that, the fact that this story hit the news as hard as it did is actually quite heartening. It wouldn’t have made mainstream news 10 years ago.

I also recently ran into the anti-psychiatry movement founded by Scientology, the ironically named Citizens Commission on Human Rights. As I stated in my blog here this was really shocking for me. I know people struggle with the idea that children can experience distress and mental illness but to run head first into people that don’t believe that mental illness exists at all?

There is definitely a lot of work still to be done to help educate people but I also know that there are lots of fantastic organisations, too many to name, fighting daily to reduce stigma and increase awareness.

So overall how is the state of children and young people’s mental health in 2013? I don’t think we can say clearly that it is “better” or “worse” than it was 10 years ago. There have been improvements, there have been set backs but perhaps, if I am dangerously optimistic, I would say things are gradually improving in some ways.

What we need now is for proper investment in children and young people’s mental health, and in mental health in general. For too long it has been a Cinderella service and we cannot continue this way. Research shows both that over half of adults with a mental health issue developed it by the age of 14 and that prevention and early intervention work and save both money, and more importantly lives, in the long run.

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.

Thank goodness it’s Friday!

It has been a very productive week in the office but in my poor sleep deprived, zombie-esque state i am rather happy to have reached the end of the working week. My sleep tracker app tells me i am very much in debt to the sandman.

A lot of progress has been made though, we have been working hard in the office, mapping even more services (now almost 400!), going on fact finding missions, blogging and i’ve been busting some jargon to help young people navigate the often nonsensical world of psych-speak.

And next week is looking like another busy one, not that that’s a bad thing!

On Monday i will be attending the London Launch of Rethink Your Mind. which is being held at Tuffnell Park Tavern (12:30-16:30) and is free. The details are below if you also wish to attend. It looks like a fantastic opportunity to hear some really interesting people speak and do some networking.

On Wednesday the team and I shall be sitting down with
BrightLemon. to start working on building the app and website which is very exciting!

On Friday i shall be back in the offices of the Royal College of Psychiatrists fact finding and talking about quality & improvement in CAMHS.

And Saturday sees the return of YoungMinds VIK day which is something i always look forward to. To find out more about the work the VIK project do click here.

 

So i hope you all have a good weekend and hopefully come Monday i shall be a bit more awake! We will also be sending out surveys & sharing our initial web page with you early next week so watch this space!

In the meantime you can:
Like us on Facebook
Follow us on Twitter

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.

My experience of CAMHS

Through my work with YoungMinds i am often asked to think back on my time under the care of my local CAMHS service. I used to think of it is a a big portion of my “ill” experience, it did after all span three of the most mentally ill years of my life. From the age of 14 to 17 i was seriously unwell and those years were punctuated with hospital visits, feverent and frequent self harm, plunging weight, self medication and a lot of sadness.

However it has been almost 5 years now since i left CAMHS..not so much because i was supposed to, not because i was “functioning/normal/well”, whichever one of these vague concepts you want to use, but because to be perfectly honest i was fed up and wanted nothing more than to never have to sit in one of those drab waiting rooms ever again or have another appointment where i was asked “and how does that make you feel?”.  I was well and truly fed up.

Looking back i think it’s a shame that my experiences caused me so much resentment and disillusion with mental health services. On paper i had a relatively good experience, over those three years i had therapy, fairly frequent meetings with a psychiatrist, a short course of CBT and tried a range of medications. However just because in black and white it looks good it unfortunately does not mean that what you get is helpful or productive and i certainly did not emerge from CAMHS a fully functioning or happy girl. Since then i have spent the last four plus years fending for myself with very little input from mental health services (other than in crisis situations which have been very mixed experiences in themselves) and have jumped from medication to medication, sometimes winding up heavily dependent and other times swearing off pharmaceuticals completely. That and i have been lucky enough to have the love and support of a wonderful family, friends and partner who have done far, far more for my mental health than trained professionals ever have.

The reason i am blogging about this subject today however is because of a specific question i was asked recently by a member of YoungMinds staff for a questionnaire around IAPT. The question was “What has been the best experience you’ve had in terms of communication and overall relationship with a mental health professional?” and the more i thought about it the more i drew a depressing blank and found myself unable to answer that question.

I tried to think back to my experience of CAMHS and the professionals i encountered in it as a service user and although the memories grow increasingly hazy as time passes i definitely remembered the ridiculous number of people i saw during that three year period.

One of the biggest problems i found with my care is that i felt i was constantly passed from one person to another. I had a therapist for pretty much the duration but i didn’t feel i could talk to her, i didn’t feel she understood me, not just because of my mental illnesses but also because i was a young person. She tried and she was a lovely person who i hold nothing against but she frustrated me with what felt like inane questions; “and how did that make you feel?” and questions i had no idea the answer to “what do you want from treatment/life?” which seemed like huge questions for someone who couldn’t see herself living until next week. I wanted her to coax out the secrets i was hiding from everyone and to help me build up trust in sharing those but i felt my trust completely destroyed when they told my parents about my Anorexia and Self Harm (they didn’t do it behind my back, they said either i had to tell my parents or they would and i didn’t have the words or the ability to voice these, i was scared and didn’t want my coping mechanisms taken from me, it felt like a bereavement when they were and in hindsight i think they could have handled the situation much better and that they should have consulted me more).

Alongside her i saw a psychiatrist every six weeks or so, these were painful and awkward sessions involving my parents who i wanted to protect from what i saw as my madness, my badness. I would sit in the corner pulling out clumps of my hair, scratching the skin off my arm and not making eye contact with anyone. The psychiatrist changed every six months and so every six months a new one came along who i had to re-tell my story to which was usually very distressing. I quickly learnt to keep quiet and avoid building up any kind of relationship with them because i knew that sooner or later they would be gone and i would have to start again and i could never predict if the next one would be helpful or do more harm than good as some did. They were a mixed bunch, “the psychs”, some were young and inexperienced, but i liked these ones more, even though i quickly found that i often knew almost as much as they did and they also seemed a lot more genuinely concerned for me, shocked that a once shy but friendly, well achieving girl could have been reduced to a bleeding, crying, shaking creature in the corner of the room. The older ones seemed to be more detached from my life, i found them patronising and often felt like screaming at them, instead biting my lip.

One particular experience stands out; I was put on a medication that soon made me highly aggressive (for anyone that knows me they know this is totally out of character), suicidal and full of nervous energy i just could not contain (i spent many nights frantically scrubbing the kitchen or pacing through the house at 4am). I went back to my psychiatrist for an emergency appointment, i told him in no uncertain terms that if i stayed on this medication i would end up harming myself or someone else. I was desperate to be off it. His response? Would i like to try a higher dose? I could have, and probably did, cry.

There were others too, numerous social workers who popped up in sessions unannounced from time to time (to this day i’m not sure what their purpose was), psychologists,  a short but lovely stint with a CBT therapist and then the numerous nurses and psych teams i saw during the brief hospital admissions (i was always discharged straight away and never kept in even though this meant slow, painful months of house arrest and my parents babysitting me, taking me into work with them and my school monitoring me so closely that i felt more and more like a freak) and GPs..a subject which could easily take up a whole post in itself!

It’s hard to remember them all, i was so ill and their part in my life and health was so fleeting that i have to look back at old journals for any real detail about them. But what i remember is that however fleeting their presence they still had what felt like so much control over me. Sitting there in their offices i was a small, almost mute thing, shrunken by depression and Anorexia, and there they were, the Psychiatrist with a capital “P”, the one with the power to take me on or off medication, to increase dosages, to write about me in files that i couldn’t see and which are still kept somewhere to this day and to change what diagnosis i was labelled with..a massive thing when your sense of self and identity is so fragile. Very little of this was thoroughly discussed with me, they had their hefty medical books and their prescription pads and i complied. I do not remember a care plan, there was certainly no care co-ordinator or advocate. I remember a lot of decisions being made about me over my head without my input. I know i was not the easiest person to deal with but i don’t feel they reached out as far as they could. I was their 9 o’clock, i didn’t feel like a person, certainly not one that knew what was best for her or could be involved in any of these decisions. I wasn’t even allowed to look after my own medication, the drugs they chose, instead i had to, at the age of 17 ask my mother for it every morning like a good girl. I felt that very little of my treatment was about growth and recovery, it was more about containment; containing me and my behaviours which certainly smacked more of punishment than nurturing.

But anyway i have rambled on for far too long now and i certainly do not want to scare anyone because this after all my own personal experience, just one frustrated girl. I think what gets me is that it could have been so good, it could have been so helpful had someone reached out to me in the right way and had the whole thing been more stable, less about meds, side effects and silence and more about honest, open communication.

I wish i had felt able to speak to them and divulge more of my worries and fears but if you patronise a young person, or talk over their heads at their parents instead of looking at them it’s very unlikely that you’re ever going to build a healthy relationship. The relationship between a CAMHS professional and a young person needs to be very much a two way thing with a good dose of respect and trust on either side if it is going to be really helpful.

So i think if i had something to say to CAMHS professionals it would be to listen. Not only to the words that come out of our mouths, which may sometimes but stumbling, confused or angry, but also listen to what we’re not saying. Notice when we bite our lip when we want to speak and make sure we are involved in our care. Being involved is empowering, especially when you feel you have no control over anything in your life. And please try and empathise.

We are only human after all.

First published 28th February 2011:

http://www.vik.org.uk/2011/02/28/my-experience-of-camhs/