When Almaz Berhanu Yesbasa fled Ethiopia for political reasons, leaving behind her husband and four daughters, two years passed before she saw her family again. She was granted refugee status in the UK but did not know where her daughters were until the British Red Cross traced them, supported Almaz with Home Office visa applications and brought about the family’s reunion in 2006. Read more about a new charity, the Refugee Welcome Trust, which helps to reunite refugees separated from loved ones, in my Society Guardian article.
“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).
Rapper Dean Rodney has a soulful strut, a powerful pair of lungs and a learning disability. Dark shades, smooth black suit, definitely supercool. I’ll be at the Royal Festival Hall on London’s South Bank tonight to see his band, the Fish Police, a fired-up trio that fuses hip hop with funk and punk and lists Japanese anime and fast food among its eclectic inspirations.
Fish Police met when musician and lyricist Charles Stuart trained two learning disabled youngsters, Dean (now Fish Police singer, rapper, bass and lyrics) and Matthew Howe (the trio’s equally cool rhythm guitarist) as part of a youth band based at disability arts organisation Heart n Soul.
Next month the Fish Police will be releasing their debut album, Cheeseburger Man (Herbie Hancock’s Watermelon Man for the McDonald’s generation?), performing at the Lincoln Center in New York and at Liverpool’s DaDa Fest, the UK’s largest disability and deaf arts festival. Their music is a fresh and freestyling antidote to the conveyor-belt fodder jostling for space in today’s uninspiringly plastic charts.
I came across Heart n Soul over a year ago when I heard about one of its artists, soul singer Lizzie Emeh. Lizzie broke new ground by becoming what’s thought to be the first learning disabled solo artist to release an album to the general public. Loud and Proud was three years in the making and produced with the support of Heart n Soul, 33 years after Lizzie’s parents were told never she would never walk or talk following complications at birth.
In 1984, musician Mark Williams (now Heart n Soul’s director) wanted to explore how music and art could make a difference in communities. He began running creative sessions in east London for a group of people with learning disabilities who went to the local day centre, The Mulberry Centre. Eventually The Mulberry Crew, as they came to be known, moved into a bigger arts complex in Deptford and became Heart n Soul, with the aim of working towards professional productions – not simply, as was then the norm, undergoing art therapy.
The charity now runs a hugely popular club night for people with learning disabilities, the Beautiful Octopus club, and has a consultancy arm to advise other organisations on setting up cultural events for those with special needs. It also employs people with a learning disability and markets arts events to the learning disabled.
The Fish Police, Lizzie Emeh and their other talented peers are also regulars at Heart n Soul’s summer arts festival which is based on the Beautiful Octopus club night. The event isn’t on most people’s summer festival radars, but it should be. Along with live music, the event a couple of months ago boasted a comedy stage, improv and open mic sessions, face painting, a massage tent, a chill out zone designed by the Brockley Jack Studio Theatre, cinema room, dance floor and VJs and DJs. Performance art is notoriously hard to pull off, but the trio of artists performing as Live Heart did so with panache, demonstrating why the Tate Modern recently invited them to perform. K:DNA showed off their inspired blend of funk, reggae and classical music while the Riki Jodelko Band were an amazingly tight soul-pop outfit, astounding when they covered Bill Withers’ Lovely Day and Bob Marley’s Could You Be Loved.
Best of all, I loved the inclusive nature of the event. The Beautiful Octopus invites everyone to have a good time, regardless of ability or special need. When you enter the world of Heart n Soul’s festivals or club nights, when you immerse yourself in the melee of fancy dress, fairy wings and face paints, when someone in a clown outfit tumbles head over heels into a perfect cartwheel right in front of you, whether they have a learning disability or not is irrelevant – what’s important is that they’re having fun. And it’s infectious.
Frankly, in this environment (compared to other events I’ve blogged about) it’s impossible not to roll with the good times. I’m working on my cartwheel for next summer…for tonight, the shades and soulful strut will have to do.
* The Beautiful Octopus Club is at the Royal Festival Hall, Southbank Centre, tonight (Friday 8 Oct) 7pm-12am. Entry is free.