“People assume because we’re young and because we have suffered with a mental health problem, what we say is irrelevant,” says 19-year-old Edinburgh student Sarah-Jane Dougan. Dougan and Leeds-based Caroline Holroyd, 21, are members of Very Important Kids (VIK), a panel of campaigners advising mental health charity YoungMinds on its aims.
Both women have experienced mental health issues, including depression, for which they have undergone counselling and therapy. VIK aims to help shape health services; it recently worked with the Royal College of Psychiatrists, for example. Dougan and Holroyd’s brand of user involvement reflects health secretary Andrew Lansley’s patient-led vision for the NHS. Here they explain why politicians and policymakers should listen to them.
We got involved with VIK because… it was a chance to use our negative experience with mental health, and get something positive out of it. I’m sure a lot of service users have opinions on how their service can be improved or change, and they know what worked and what didn’t, and also what needs to be done. As part of VIK we have the opportunity to influence these things, and get the ball rolling to bring change (Sarah Dougan/SD).
Patients must influence services because… We’re the experts; real life experience is what has informed our opinions (Caroline Holroyd/CH).
Young people in particular must influence services because…we are the future, the next generation. We’re the ones who will be using these services in years to come (CH). Having a good service for young people will mean that they are less likely to have to use adult services when they are older. Prevention is better than treatment (SD)!
The biggest challenge has been…making people realise that young people with mental health problems can have a valuable input. People seem to assume that because we are young, and because we have suffered with a mental health problem, what we say is irrelevant (SD).
Consultation today is…rare, but improving. Sometimes I feel when services ask for young people’s participation it is simply a tokenistic gesture – lip service (CH).
The key to real patient involvement is…engaging with people from all areas of society and making sure it is easy for them to get involved (CH). It’s about listening and actually hearing what the patient has to say rather than the organization simply making a bunch of decisions and then asking if it’s ok (SD).
Mental ill-health among the young…isn’t always openly discussed even within families where one or more of them has a mental health problem. Mental illness in itself is an issue that is kept under wraps because of the prevailing stigma, lack of education and the many myths surrounding it, sometimes perpetuated by the media (people with mental illness as serial killers, and so on) (CH). It’s an issue that people would rather admit wasn’t happening (SD).
The biggest problem with the mental health system is…the waiting times for receiving treatment, particularly talking therapies. People can be waiting months and even then not end up receiving the correct treatment for their condition. On the whole treatment can be very hit and miss, and support isn’t always sustained meaning people can be suffering in silence (CH). People can’t access services when they need it. If you have anorexia for example, mental health services only seem to recognize it when your body weight is so low that you need to be hospitalized. This is relying on the patients physical health rather than their mental health (SD).
The biggest problem with psychiatric units is…they can feel like prisons; they can be very disempowering (CH). Patients are there to get help – not to be punished (SD)!
The biggest difference the government could make in mental health policy would be…to treat it with the same seriousness and urgency as physical health (SD).
If we had five minutes with health secretary Andrew Lansley…we’d ask him what he thinks needs to change. If he has the same points as us – why hasn’t something been done about it before (SD)? I’d emphasise the importance of prioritising young people’s mental health services and how promoting emotional wellbeing and using early intervention techniques can prevent more severe mental problems which will ultimately put less pressure on the NHS (CH).
4 thoughts on “Young, gifted and blanked?”
Thanks for a great article from VIK @youngminds, setting out powerfully why young people who have used mental health services are vital in helping improve these services for the future.
Sometimes government do get it and it’s great when they do. I supported some young people from b-eat (www.b-eat.co.uk; @beat) at a massive national government review of the Children Plan, with ministers and directors of children’s services everywhere.
After hearing the young people from b-eat, the national organisation supporting young people with eating disorders, Ann Keen MP, the then Parliamentary Under-Secretary of State at the Department of Health, put down here prepared speech, came to the front and addressed the group directly, saying:
“They’ve said it all. My text would be foolish. I would feel silly to give it now. What you said was so profound and shocking and dreadful and encouraging. I’d like to spend more time with you, more than a few minutes. Having heard it, I need to hear more of it. Your statements were shocking, but we needed to hear them. It must have taken great courage to say it. Thank you.”
Testimony to the power of young people’s participation when harnessed to decision making. So government can do it when they want and we can only hope and continue to work hard on all fronts to make the Coalition do the same. We’ve put together some conversations from around the country on children and young people’s human rights at this time of massive policy and political change which might be interesting and useful to dip into and add to: http://www.rightspace.org.uk.
Bill thank you (very belatedly – The Social Issue is interrupted by half term!) – for your comment and pointers to both Right Space and Practical Participation. As Right Space makes clear “there is no point in the participation of young people unless it leads to change.” More ministers and others in positions of influence and authority should react as Ann Keen did – here’s hoping the cuts drive won’t be used as an excuse to engage young people and act upon what they say.
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