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.

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

 

 

 

 

 

 

 

 

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.

APPG on Children’s Health at the House of Lords

On the 22^nd of October i had a very exclusive ticket to the House of Lords to speak and give evidence at an All Party Parliamentary Group for Children. This was apparently the second meeting of the group although the first for me and the question asked of us was “are children and young people getting the opportunities they want” in terms of good health and was looking at access to healthcare.

We heard from:

Baroness Massey who was kind enough to chair the event.

Dr. Chris Hanvey, the chief executive of the Royal College of Paediatrics and Child Health.

Caroline Noakes, MP and chair of the All Party Parliamentary Group on Body Image who told us about her work and area of interests which include self esteem, body image and mental health. It was great to hear from an MP so involved in raising awareness of these issues which affect so many young people.

Professor Helen Cross, the Prince of Wales chair of Childhood Epilepsy and three young people from the charity Young Epilepsy. I was so impressed by the young people who spoke about their experiences of other peoples ignorance and the discrimination and lack of understanding they had faced in receiving help for their conditions.

Young people and staff from West London Mental Health Trust’s Wells Unit who spoke openly and honestly about their experiences of both the justice and mental health systems and what they think would help young people stay mentally healthy, especially vulnerable young people who had become caught up in gangs.

We also heard from a representative at ChildLine who talked us through some really eye opening statistics. I was amazed to hear that since it was founded in 1986 ChildLine has counselled over 2.9 million children.

They spoke about the 69% increase in calls about self harm and 39% increase about suicide and told us that depression and mental health concerns feature in the top 5 concerns for 16 and 17 year olds calling them.

I was the last young person to speak at the APPG, this felt like a really big responsibility, especially after hearing from the other young people at the event but i wanted to make sure that i got across how young people who use mental health services often feel.

I also pointed out that, as i was the last person to speak, it showed that there continue to be wide ranging and very damaging problems within children and young people’s healthcare regardless of whether this is mental or physical health. I pointed out that this was an issue rampant across services and young people frequently felt dismissed, ignored and patronised by services and professionals.

I also spoke about the work i had done in the past and my experiences of services which is what led me to get involved in YoungMinds in the first place. I spoke about the work i do now with YoungMinds and NHS London and the app that we are developing specifically for young people in London and the State of Mind manifesto.

The group wrapped up the meeting with a quick Q&A session, we would have loved to have speak longer but we had to finish at 6:30. I must admit to being exhausted by the end of the day but it was definitely an incredibly worthwhile experience and i am glad that i was able to speak at such a high level about mental health and young people. I just hope that what i said can in some way help to make a difference, if only in opening people’s eyes to some of the experiences of young people.

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/