Category Archives: Mental health

We should be kind, while there is still time

Lol Butterfield, mental health campaigner
Over 30 years ago as a young man I first set foot in a psychiatric hospital. It was an old Victorian “asylum” in the rolling countryside of Bedfordshire. I had travelled to the south of England from my native north east to find work, and here I found myself.

I wandered down the endless dimly lit corridors and found myself surrounded by staring, pain-etched faces with wild curious eyes. It felt like I had stumbled onto the set of the film One Flew Over the Cuckoos Nest. There was a sense of unreality to it all, but also of mystique. It was so stereotypical of all I had previously read in books and seen on television about asylums – those places others and never ourselves, of course, will be sent to for being “mad”.

Next year, it will be 50 years since the first steps towards community care for mental health (see this useful mental health timeline on the Mind website) this “anniversary” has made me revisit my early experiences as a mental health care professional and look afresh at the history of mental health care.

After 1962’s Hospital plan for England and Wales, large psychiatric hospitals closed and local authorities developed community services. That was, of course, the theory – not all local areas had adequate community services as we know, so there were still long-stay patients in hospitals up and down the country.

So it was more than three decades ago in that psychiatric hospital that my understanding and awareness of mental illness grew. I came to realise that the staring faces and wild eyes were ordinary people who had found themselves in extraordinary circumstances. They had been incarcerated many years before.

As a consequence of the debilitating illnesses they had, such as schizophrenia, and the horrendous medication side effects, they were displaying mannerisms that drew unwanted attention. Mannerisms that perpetuated the stigmatising process further. They had lost their self confidence, their motivation, and probably more importantly their daily living skills to function independently outside of the hospital confines. They had become institutionalised. The hospital was their home and they would eventually die there. Within the walls of the hospital the behaviour became normalised, the wandering up and down corridors, the staring at strangers and the shuffling gait. Outside in the local town it was polarised.

In the early 1990s many of the old asylums were closed. They had become anachronistic. More people were now being rehabilitated with the government’s proposal for care in the community, a radical shift in policy and approach essentially moving most of the care emphasis from the hospitals into the communities. People were discharged from the hospitals back into their communities with follow up planned support and care (in most cases).

Sadly some slipped through the safety net of care. And in the years that followed the medication improved and the stigmatising side effects became less. There was an increased acknowledgement of the importance of social inclusion, of recovery from illness, and of empowerment – treating people as individuals with informed choice and promoting equality.

Flashforward to 2011 and yet we still have stigma. We still have misunderstanding and we still have inequality in many sections of society for those 1 in 4 of the population who experience mental illhealth.

What is my long term vision of stigma and discrimination and where we will be in the next 50 years? I believe that stigma will have been eradicated completely following the success of campaigns such as Time To Change. I hope for a realisation that both our physical and mental wellbeing work in correlation and, as such, cannot and must not be split. I believe the strength and vision of those who have fought so hard will be acknowledged one day and in schools across the country their stories will be lesson material. Leading figures in the anti-stigma movement will be seen more positively as vehicles for social change. Mental health stigma will be seen in the same unacceptable light as racism and homophobia.

I have campaigned for many years, most of my adult life even, and no doubt ruffled a few feathers in the process. But I would rather stand up and be counted for saying something I passionately believe in than silently watch and do nothing. This I cannot do alone and I am always motivated by the support I get from others, more so from the victims of stigma and discrimination themselves.

As Philip Larkin wrote in The Mower, “We should be kind while there is still time”. In the case of mental health and tackling stigma and discrimination this kindness will hopefully continue through campaigning. We have come a long way, but we are not there yet.

Pictures of mental health

In a Room, by William Ball

The painting here, depicting the torment of a lost past and an unknown future, is among the intriguing works in a new exhibition opening in London today which focuses on mental health. The arts event by charity CoolTan Arts, an organistion run for and by people with experience of mental health issues that I’ve blogged about before, includes collage, painting, sculpture to batik and drawing.

William Ball, the artist behind the piece above, In a Room, says his use of black and yellow reflects concepts of death and danger. Another of Ball’s pieces, Through a Window, meanwhile, represents the optimism and growth he found at CoolTan; it is no coincidence that the artist also cares for the garden at the arts charity.

Ball has been a CoolTan regular since 2003 after a mental health crisis sparked by his mother’s death a few years previously, redundancy and relationship breakdown. “My future looked very bleak, at 51-years-old my life seemed as if it was over.” Almost sectioned and prescribed “heavy medication”, Ball was introduced to CoolTan Arts by a friend: “The people were warm and supportive. I soon visited regularly and enjoyed being part of it.”

The artist’s story is testament to the charity’s work which aims to change perceptions of mental ill health. The organisation, based in Southwark, south London, believes that mental wellbeing is enhanced by creativity.

Here are a few of the other pieces on show until November 30th at Carnegie Library in Herne Hill, south London.

Geometric Patterns, Marjorie McLean
View from the Southbank of Tower Bridge, Aaron Pilgrim
Untitled, Graham Newton
Through a Window, William Ball

The free exhibition opens today at a Library, 188 Herne Hill Road, SE24 0AG, and runs until November 30. For information call 0207 701 2696 or email: suzie@cooltanarts.org.uk

“I remember when she could make herself a cup of tea”

When I asked my kids to tell me how they felt about visiting their grandma, who has dementia, in her care home, they were honest. “It can be a bit spooky because there are a lot of people there who can’t remember things,” said my eight-year-old. “It’s sad sometimes when we see her, especially when she says she thinks you’re her sister. I don’t really like hearing that. I remember when she was in her own house and she could make herself a cup of tea.”

Hard as it was to hear those words, I can’t say I find my daughter’s reaction surprising. I often find a visit to my mum “spooky” too. Although her care home is very good, it’s not somewhere I’d ever wanted her to be. It’s tough seeing her now, so different from the active person she once was, and the behaviour of people with dementia can be disconcerting and at times downright distressing. I initially found the resident who repeatedly cries out: “I feel terrible” very upsetting – and I’m supposed to be the adult.

The children and I have talked about how my mother used to be, why she gets confused now and why it’s so important that we spend the time that we do with her. My five-year-old summed it up well: “If we didn’t go, she’d be upset and she’s your mum.” But although we have often talked about dementia, and how it makes them feel, I’ve sometimes felt I was struggling to explain what was going on.

That’s why I was so impressed to find The Milk’s In The Oven, a booklet published by the Mental Health Foundation, to help children understand a bit more about dementia. Simply written, with practical exercises to encourage children to think about what it might be like to lose their memory, it’s an effective tool both for the classroom and for families affected by dementia.

Toby Williamson, head of development and later life at the Mental Health Foundation, explains that the booklet, originally published more than a decade ago but updated this autumn, is designed to help address some of the stigma surrounding dementia. “What we are trying to do is help young people understand what dementia is and how it affects the person,” he says. “It addresses the fears children might experience and the feelings they might have of being embarrassed or angry. What it is saying is actually you might well have those feelings, it’s understandable and you can talk about it. We want to reduce the fear of going to visit people with dementia. Social relationships are incredibly important for people with dementia – even in the final stages, a bit of contact, just holding hands, can mean so much.”

As Williamson points out, most families in the UK will, at some stage, have a relative or friend with dementia. It’s important, he stresses, that people know more about the disease, both so that they can support the person affected and so that they can encourage relatives to get an early diagnosis, often so valuable in terms of treatment and preparing for what’s ahead. And even for those children who don’t know anyone with dementia, there’s huge value in learning more about it.

Schools are increasingly teaming up with health professionals to build the links which can foster greater understanding. One impressive project is in Doncaster, where pupils from three schools now visit day centres across the town, taking part in activities like baking, sewing, singing and playing dominoes with people with dementia.

Mary Beardsley, the team manager for the local NHS trust’s Doncaster Community Memory Therapy Service says, the youngsters involved, who are aged between nine and 11, usually don’t have any personal experience of dementia. But thanks to the project they have built strong relationships with the service users, gaining a real respect for them as individuals. For the older people too, it’s been an overwhelmingly positive experience.

“Our patients gain so much confidence – it puts them in a position of power being able to teach the children something,” says Beardsley. “When you get dementia, you lose your confidence and you don’t think you are good enough. Seeing the interaction between children and patients is fantastic. The children grow to love them and the patients can’t wait for them to come.”

That recipe for a better understanding of dementia through building new relationships is one I can see developing in my own children. As they talk with some of the residents at my mum’s home, I hope they are seeing that older people with dementia need our support and respect. It’s a lesson that, as the numbers with dementia rise, more of the younger generation will need to learn.

Is target-driven schooling damaging children’s mental health?

This evening the charity YoungMinds hosts its annual debate in London on the controversial topic of whether our target driven schools system is damaging children’s wellbeing. The charity aims to improve the mental health and emotional well-being of children and young people.

The discussion will be chaired by the BBC’s Home Editor, Mark Easton with panellists including Fiona Millar, journalist and education campaigner, Matthew Taylor, chief executive of the Royal Society of Arts, Karen Robinson, head of education and equality at the National Union of Teachers, Ian Morris, Head of Wellbeing at Wellington College and Adele Eastman, senior policy specialist at the Centre for Social Justice.

After what promises to be a controversial debate, the event will conclude with a short film made by young people who are part of the Very Important Kids (VIK) participation group – of which I am a member – on this subject and the stigma faced by young people with mental health difficulties.

A still from tonight's VIK film about schooling and mental health. Pic: VIK

The film to be shown tells the story of a schoolgirl called Jessie who, though having no diagnosed mental illness is experiencing a great deal of emotional distress and finding it increasingly difficult to cope with the amount of stress she is under, especially with exams looming and pressure from school and family to perform well. Every year around exam time we hear of the stress young people are being placed under to achieve top grades, sometimes to the detriment of their mental health. Our film hopes to shine a light on this issue, promote debate and emphasise the importance of good emotional wellbeing to prevent future mental health difficulties.

A film made by youth mental health campaigners considers if targets damage pupil's wellbeing?Pic: VIK

Acted, directed and produced by members of the VIK group we aim to produce a trilogy of films centred on the theme of young people’s mental health, ranging from emotional problems to more severe forms of mental illness. The message we endeavour to get across is that every one of us is susceptible to mental health difficulties; we all exist on a continuum from happiness, to sadness, to an inability to cope and then mental illness.

Mental health is not simply an affliction of the few but something one in four of us can expect to experience in our lifetime. Because of this understanding how to take care of your emotional wellbeing and building resilience from a young age is vital and another theme which will be interweaved through the trilogy.

Having mental health difficulties from a young age can bring with it its own stigma. Young people can feel stigmatised against in society anyway, for a whole host of reasons and when you add on to that the stigma of having a mental health problem it can be really difficult to trust anyone enough to talk to them about what you are experiencing, or even find someone willing to listen and empathise.

All the young people involved in making this film have experience of mental health difficulties and the desire to challenge old ideas about mental health is something we feel passionately about. Demystifying what it’s like to be a young person with mental health difficulties can go a long way to tackling stigma and educating future generations that mental health isn’t just about mental illness and definitely not something to be afraid of.

* This evening we will also celebrate the launch of a new project, YoungMinds in Schools, to improve the emotional wellbeing of children and young people in school. The programme aims to improve outcomes for children and young people with behavioural, emotional and social difficulties by bringing together professionals, parents, children and young people to create a comprehensive suite of learning resources.

The project seeks to maximise the potential to positively influence the emotional wellbeing and mental health of the whole school community, adults and children, as well as addressing the specific needs of pupils identified as having behavioural, emotional and social difficulties (BESDs).

The programme will work collaboratively with clusters of primary and secondary schools and the services that link to those schools, providing training and consultancy support to schools and gathering the views of professionals, parents and pupils to shape innovative resources. YoungMinds has received two years funding from the Department for Education (DfE) through its Special Educational Needs and Disability (SEND) programme for the YoungMinds in Schools project.

The social benefits of a seaside stay

Back to school after the half term break today and while some children will have enjoyed days out or trips away, two million live in families that can’t afford a day trip to the seaside, never mind a holiday.

Today is also the day that an All Party Parliamentary Group on social tourism is due to publish its findings. Its remit over the last few months has been “to investigate and promote the social and economic benefits of social tourism”, social tourism generally meaning that families on low incomes are helped to afford a break. Family breaks, say supporters of social tourism, can lead to children being more engaged at school, boost social integration, help with health issues and encourage economic growth in under-used resorts or regions which suffer from the ebb and flow of seasonal tourism.

But while not being able to take holidays has been used as a poverty indicator by the government since 2003, it’s easy to see why social tourism is a contentious issue. After all, why should you have a holiday if you don’t have a job to take a break from? Why should the taxpayer fund your vacation if you don’t earn enough to pay for your own?

The debate also touches on issues such as allowing children out of school during term time (to take advantage of off-peak breaks) as well as notions of charity handouts to jobless families and their “naughty children”. As one teacher commented in a Guardian piece earlier this year on charity holidays “There was resentment from some of the families not chosen…We were accused of ‘taking the naughty children’. We didn’t, but perhaps it was understandable that they thought so.”

The Family Holiday Association, the charity where that two million statistic I quoted above came from, helps low income families have time away. The organisation takes referrals from welfare agencies like social services and children’s charities, helping those with a yearly household income of below £26,000 access holidays and who have not had a break for four years.

While social tourism in the UK is somewhat ad-hoc – the Family Holiday Association relies on voluntary donations to fund families in need of a break and invidivual social services departments might have case-by-case funding for respite breaks – the rest of Europe has state-aided social tourism.

French “holiday cheques”, for example, can be used for accommodation, food, transport, leisure and culture. Employees get help to make regular savings, supplemented by employers and social organisations which get reduced taxes in return. The employee redeems the total value of the savings and supplementary contributions in the form of holiday cheques. In Spain, a state and benificiary-funded holiday programme funds breaks for older people which also tackle seasonality in the tourism sector. It gives older people the chance for holidays in off-peak areas with a warm climate.

Lynn Minnaert, lecturer in tourism at Surrey University who runs a programme for the Economic and Social Research Council on social tourism, has contributed to the APPAG report. She argues that while the policy concept is on the UK’s political agenda as a talking point, there is little clear action on social tourism.

Minnaert’s Europe-wide research includes schemes where people have improved their family relationships and been helped into employment or boosted their mental health (this, although published a while ago, is an interesting article by Clare Allen on why people with mental health problems rarely take holidays). Minnaert argues the time is right for the UK to embrace the concept of social tourism but acknowledges that “the misconception that the government will pay people to go on holidays” makes proper debate difficult.

But Minnaert adds that social tourism isn’t simply about “state-funded holidays”; the state could provide a service to put people in touch with holiday and leisure venues that stand empty, from barely occupied seaside B&Bs to underused cafes and restaurants. Resorts with low occupancy could specialize on a more organised basis in holidays for those coming out of hospital, she adds (after all, the health benefits of seawater is what made resorts like Brighton became fashionable in the late 18th century) and be involved in more respite care projects for families with disabled children.

Minnaert says she hopes the APPG report due today will show social tourism is cost-effective and encourage a new social policy to the UK, getting past the “government paying for unemployed to go on holiday” school of thought to a more grown-up debate on the issue.

In terms of practical action, next steps include a forum or network between tourism sector and policy – “on both sides there is willingness to look into this, but no vehicle” – and mapping of under-used holiday provision. Minneart also suggests new joint procurement for people who cannot travel independently or who have not travelled before, transport providers could get involved.

The Family Holiday Association has complied comments from those they have helped, among them a family where the youngest child needed regular hospital treatment and where the father was unemployed and had cancer. The family had a seaside break in Skegness, and although a world away from the hot, faraway destinations most people refer to when they say they “need a holiday”, the long-term impact of the break was priceless. As the family’s support worker said: “I could see that the three week build up to the holiday was as important as the holiday itself. And for the next six months the family lived off the break.”

From homeless to hero

Tom Hodson at the Ancient Technology Centre, Dorset. He has just won a BTCV Green Hero award. Credit: Professional Images
Tom Hodson used to live on the streets, his was a peripatetic lifestyle that did little to help him overcome his depression and manic episodes. Diagnosed bipolar, even when he got a roof over his head, he often went for a week without proper sleep.

Today he is honoured as a Green Hero in an annual awards scheme, having made a difference to the local environment through volunteering and transforming his life in the process. The 21-year-old from Salisbury has has won in the natual health category in the awards run by practical conservation charity British Trust for Conservation Volunteers (BTCV), recognising how he’s changed his own life and inspired others. The Green Hero awards show the positive impact of those who give their time for community-based conservation projects.

Environmental charity BTCV volunteer Tom Hodson a "green hero". Credit: Professional Images

Tom’s hands-on, practical work with the charity has had, he says, huge benefits on his sleep issues. Without his role, he adds “I’d be doing nothing..going nowhere with my life.”

The scheme has given him “direction and purpose” and has boosted his mental health. As well as becoming more confident, he has learned time keeping, healthy eating and how to use a computer. He leads groups of volunteers and is looking forward to coming off benefits and into paid work.

Environmental award-winner Tom Hodson at the Ancient Technology Centre, Dorset. Credit: Professional Images

Tom’s fellow Green Heroes include Michael Rogerson, 20, who won the volunteer of the year award. Michael, who has been deaf since birth, joined BTCV after 15 months without work, he was depressed and had very low self esteem. He has now got his dream job as a gardener and is learning to speak after having a cochlear implant and one day hopes to set up a dry stone walling business.

And the benefit of supporting and including a diverse volunteer workforce is not simply on the inviduvual themselves; having such a diverse team of volunteers improves social inclusion and breaks stigmas.

There are of course specific schemes that offer people with disabilities or those with mental health problems the opportunity to donate their time to the community with support. Schemes like the Respect Us project, run by charity Community Service Volunteers (CSV) that help young learning disabled people to volunteer as they move from school to becoming a young adult.

It might seem like the current financial climate is the worst time to invest in extra support for volunteers who might be vulnerable in some way, but supported volunteering, pays dividends. Check here for great little film showing how Jenny, with Asperger’s found new confidence and skills and boosted intergenerational contact between local youth and older people through supported volunteering).

At BTCV, volunteer officers are aware of the impact of “green heros” likes Michael and Tom. Senior project officer Rachel Miller, who nominated Michael says: “His can-do attitude, where there are no barriers, has been an example to us all.” Tara Hares, volunteer officer who works with Tom, adds: “He turns up raring to go, he doesn’t allow his issues to affect the work he is doing..I feel proud working with Tom, knowing what he has been through and he is still funny, and brilliant at what he does. I’m pleased and proud to work with him.”

Watch this quite lovely film, introduced by Sir David Attenborough, which features both Tom and Michael and other inspiring volunteers:
http://youtu.be/GSCattrH3bA

* On a related note, the Hardest Hit campaign run jointly by the Disability Benefits Consortium and the UK Disabled People’s Council has organised several events tomorrow, Saturday 22nd, in protest about the impact of cuts on society’s most vulnerable – a community that includes people whose needs echo those of Tom and Michael, above. More information on what’s happening tomorrow is here.

Depression: when a bad day becomes a nightmare, and a wish list for youth mental health

To mark World Mental Health Day, two bloggers with experience of mental health issues share their thoughts on action. Here, campaigner Lol Butterfield writes about the fine line between “a bad day” and something more serious, while below, youth mental health campaigner Carrie Holroyd shares her 10-point wish list to boost youth mental health.

Lol Butterfield, Social Issue blogger, mental health campaigner
We all have mental health as well as physical health. They both work in correlation, two sides of the same coin. It’s World Mental Health Day today and I wanted to explore the question of when our mental health become mental ill health? When does having a bad day become a living nightmare? If our having a ‘bad day’ becomes more frequent, as sure as night follows day, we have reached what I call “my dark place”, clinical depression. It is a fine line between having the “blues” and clinical depression but once you have crossed that emotional line, you know where you are.

My own experience of depression seven years ago would have been not different to many other people’s experiences. Maybe the difference was that I was in denial for most of my decline into severe depression? With the benefit of hindsight now I was probably no different from many other men in that aspect, denial was my coping mechanism, I masked my symptoms thinking it would all go away. If only (it’s worth pointing out though, that often people do of course seek help when they experience the initial symptoms, men included).

There are a range of common symptoms associated with depression such as difficulty sleeping, poor concentration, not eating regularly or over eating (comfort eating) Our thoughts become very negative, we feel guilty over our words and our actions, we worry unecessarily. With depression the world around us becomes very dark and seeing the ‘light at the end of the tunnel’ as the cliché goes is far from easy. In fact it is nigh on impossible to see any light when you have reached the stage of severe depression, darkness is everywhere. The world feels like a dangerous place, it gives no quarter and does not take prisoners.

If you experience the above symptoms, or others such as becoming over emotional, irritable, having panic attacks, then seek help. Thoughts of self harm, or even suicide, will set alarm bells ringing louder than St Paul’s Cathedral. These are warning signs that help is required – and required quickly. Unfortunately when it comes to mental health men have a tendency for self denial.

As a consequence we have twice as many women then men visiting their GPs for mental health concerns even though both experience the same problems. With men it is often the outdated and totally ludicrous “big boys don’t” cry attitude. If more men had cried, and sought help sooner, we would have fewer cases of male depression. And frankly men would now be living meaningful lives instead of dying without hope as a consequence of taking their own lives, particularly young men. This is the tragedy.

So where do men seek help? The GPs surgery, as has been well-documented, is not frequented as much by men as women so we have to be creative in seeking alternatives. There are many different projects looking at mens health in particular around the country, these are usually organised and run by Primary Care Trusts. These will focus on “wellness” and “wellbeing” and promote eating a healthy diet and exercise, alongside checking blood pressures and weight. Again the important link between good physical health and mental health is being recognised.

Locally where I live on Teesside we have a Mens Health Day once a month at the Riverside stadium, home of Middlesbrough football club. These sessions are free. Men are more likely to go to an environment they feel comfortable with such as a football club, or even a social club, to discuss mental health issues because of the shame, fear and stigma.

As for me, part of my recovery involved attending my local gym. This is something I would recommend to anyone. The exercise combined with the social aspect of meeting friends and talking significantly lifted my mood and confidence level.

I would liken acknowledging you have depression to carrying an umbrella in a rainstorm. By acknowledging you have this problem you are prepared and protecting yourself from its effects. You are accepting it is there and needs to be addressed. You are proactively dealing with the problem. There are certain things we can all do to protect ourselves from poor mental health such as eating healthily, having a good regular sleep pattern, social contacts with friends, and physical exercise. These are all protecting factors against depression. And what I would see as probably the most important is sharing our worries, our feelings, with others close to us.

As the old adage goes “A problem shared is a problem halved” – in the case of depression this cannot be reinforced enough. I have survived to tell the tale, but sadly many others don’t.

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Blogger and mental health activist Carrie Holroyd
My 10 wishes for youth mental health, by Carrie Holroyd
1. The government should increase access to and availability of psychological therapy for young people with mental health problems. Prescribing psychiatric medication may be a quick and cheaper solution but doesn’t always help young people with complex problems.
2. More support in schools; with three children in every classroom having a diagnosable mental health problem, I believe there should be more in-school counsellors and training for staff on how to best support young people with mental health problems.
3. Empower us! Being young and having a mental health problem can be very disempowering, involving us in our own mental health care and increasing participation can make a huge difference.
4. Not everything is a symptom. When you have mental health problems everything you say, do, believe in can be inappropriately construed as a symptom of your illness. Having friends, family and professionals scrutinise you constantly can get very frustrating.
5. Don’t lower your expectations. Just because I have a mental health problem doesn’t mean I can’t work, study, socialise and have a fulfilling life. Things may be a bit more difficult for those of us with mental health problems but it doesn’t mean people have to lower their expectations of what we’re capable of. Many of my peers have been told by friends, family and professionals that they can’t pursue a certain career or study because of a mental health problem. Imagine how horrible it is to be told that at a young age.
6. I’d like to see people ‘open up’ about mental health problems. Don’t be so afraid to talk about it, it’s not as scary as the media can make out.
7. Don’t believe everything you hear. There are many myths surrounding mental health problems that are frankly ridiculous and increase stigma. Read up on mental health and educate yourself.
8. Early intervention is important. So many people find they don’t receive adequate support until they reach crisis point, this has to change. Early intervention can cut down on hospital admissions and prevent problems escalating into more severe forms of mental ill health.
9. Bridge the gap between child and adult services. In some parts of the country young people must leave child and adolescent services (CAMHS) at 16 and cannot use adult services (AMHS) until they reach 18.
10 . Treat young people who present at A&E for self-harm with respect and dignity, don’t dismiss them or deem them “attention seeking”.

Fundraising: how to make friends and influence people

Given the dire state of funding in the charity and public sector, fundraisers (and by that I mean staff and volunteers – not chuggers) are working overtime with some fantastically inspiring and engaging events, some of which I’ve featured on this blog. One caught my eye, not least because its title sounds like a cross between a very fine record and a throat spray.

The Largactyl Shuffle is a series of regularly-held and increasingly popular guided walks, the brainchild of the brilliantly creative user-led charity CoolTan Arts which clearly has its tongue in its cheek and its feet in its walking boots. The charity’s event is named after the anti-psychotic drug, Largactyl; the medication’s possible side effects can include a distinctive shuffle.

A piece of CoolTan art

The guided stroll on Saturday October 15th is being held to mark World Mental Health Day, which is on the previous Monday (October 10th). The five-mile guided sponsored hike is from the Maudsley Hospital, Denmark Hill, south London, to Tate Modern, Bankside. The walks are gaining a reputation for being very social, entertaining events that bring together campaigners and raise the profile of mental health issues. The organisation was founded in 1990 by a group of artists who squatted in a suntan factory, which is how Cooltan Arts got its name.

An artistic walker at a previous Shuffle event

This year’s walk is entitled No Health without Mental Health and explores the history and social impact of the NHS since its inception in 1948. There will be breaks, poetry readings and other events along the route.

Comedian and broadcaster Arthur Smith, whose family and friends have experienced clinical depression, is the event’s patron this year. Smith’s fellow patrons at the charity are artist Maggi Hambling, TV chef Rosemary Shrager sculptor Sokari Douglas Camp, writer Ali Smith and novelist and Guardian columnist Clare Allan.

Advocating that mental wellbeing is enhanced by creativity, the arts and mental health organisation is run by and for people with mental distress. Its numerous workshops at its centre in Southwark’s Walworth Road include visual arts, batik, digital arts, video, poetry, and performing arts. There are also regular exhibitions, public art projects and websites which help break down the stigma of mental distress and the gallery and performance space offers other community projects a place to exhibit. The charity also runs volunteering schemes.

CoolTan Arts Largactyl Walkers at a previous event at the Maudsley Hospital

The walk, suitable for people with disabilities and wheel chair users, finishes with a reception and refreshments at Tate Modern.

• If you’re interested in taking part, download a form from www.cooltanarts.org.uk or call 020 7701 2696 or email info@cooltanarts.org.uk walkers must bring a packed lunch and drinks, wear suitable clothes and sensible footwear. The non-refundable registration fee is £5 unwaged or £10 waged.

“As a child, I didn’t know what stigma meant – but I certainly knew how it felt”

Guest blogger Lol Butterfield, a mental health campaigner and qualified mental health nurse, explains his involvement with a national drive to tackle the stigma suffered by people with mental health issues. The campaign is driven by service users. Butterfield, who lives in Teeside, has written an autobiographical book which describes his experience of growing up with a mentally ill parent.

Lol Butterfield, Social Issue guest blogger, mental health campaigner
“He must have been insane to have done that!” Sadly, an all too familiar response following reading about a particularly vicious assault or murder, in the newspapers. The reality is usually different though and, statistically, 95% of serious crime is carried out by people who do not have a clinical diagnosis of mental illness, those who are not therefore “insane.” They are “bad not mad”. So why do we discriminate?

People experiencing mental illness are more likely to be the victim, rather than the perpetrator, of a serious crime. This criminalisation, mainly through the media, was one of the reasons I became involved in Time to Change and its Lived Experience Advisory Panel (LEAP).

LEAP is an advisory group of 12 people who shape the Time To Change programme, England’s largest mental health anti-stigma campaign. Time to Change began in 2007 funded through the Big Lottery and Comic Relief with £20 million of investment. Us “Leapsters” have extensive experience and knowledge of mental illness and a passion to put the record straight. We act as campaign ambassadors and spokespeople. With a diverse mix of expertise and good links to service user and carer networks, we work towards ensuring that service user and carers needs are at the heart of the campaign.

Over 30 years I’ve spent time working in mental health services as a qualified nurse. I have seen daily the stigma and discrimination faced by those who experience mental ill health and their families.

I’ve also been on the receiving end of this stigma myself. I experienced mental illness myself when in 2004 I had to take time off work with severe depression. I have worn the shoes of the nurse, and the patient. I can empathise with the one in four of the population who have also found themselves mentally unwell at some point in their lives.

My father also experienced mental illness and as a small child I recall the stigma surrounding this growing up in a small mining village in the north east. As a young boy I did not understand what the word stigma meant but I certainly knew how it felt at that time.

I have spoken to people who have been laughed at on the bus or been called names because people know they have mental health conditions. I know of those who have ever been told to sit in other areas of a pub, who have not applied for jobs because they fear being rejected when they disclose their mental health background. These people are vulnerable to abuse because their mannerisms. Ironically these mannerisms are often caused by their medication rather than the condition itself.

I became involved with LEAP because I saw an opportunity to positively and constructively use my experience, as both a nurse and someone with experience of mental ill-health, to make a difference.

I have presented at conferences telling my story and promoting the campaign message. I’ve taken part in TV and radio interviews, visited schools and colleges to raise awareness. Until recently, I was writing a bimonthly column for the local newspaper where I live in Teesside with the aim of tackling the negative stereotypical coverage we see all too often.

Three years ago, I decided to write Sticks and Stones, my autobiography, as another way of spreading the anti-stigma message. my childhood memories of growing up with a father who experienced mental illness and the stigma my family faced and I myself felt as a child. For me writing the book was also about encouraging others to follow my lead by using myself as a positive role model (ie someone who is trained as a mental health nurse and has experienced mental illness. I am very open about this in order to promote more acceptance from others)

Individually as well as collectively we can and will make a difference no matter how small. With imagination and creativity we can impact in those areas of society that discriminate and stigmatise.

It has not always been easy. The work I do can be stressful because often it is real people with real experiences at the core of what we do as a group, and I do as an individual. I have at times to be mindful of my own limitations and avoid pushing myself into the “dark place” of clinical depression again. That said my work gives me so much satisfaction and pleasure. To know my words and actions have made others think differently around mental health, and act differently in their treatment of those who are unwell, is reward in itself.

The work of LEAP has made a difference in that dedicated time and effort has ensured that the message is being delivered in many creative, diverse ways that otherwise may not have been. As Leapsters we cover all parts of England to touch as many people in as many regions as possible. Touching hearts and minds, promoting tolerance and understanding of mental ill-health. I believe we are teaching the next generation to act and behave differently, changing attitudes for the better.

Dilnot: reaction round up

Today the Dilnot commission on social care published its conclusions in its Fairer Care Funding report. Among its findings are that care costs should be capped and the means-tested threshold increased under major changes to the funding of adult social care in England.

The report is a chance to finally fix a shattered system, there will be widespready reaction and analysis later today and beyond to what Dilnot himself calls a once-in-a-lifetime chance to overhaul social care but for now, here’s a selection of today’s responses which I’ll try and update throughout the day.

Sue Brown, Head of Public Policy at the national deafblind charity Sense: “Sense welcomes the Dilnot report, and in particular the key finding that additional public funding for adult social care is urgently required. But we are concerned that the media focus is only on older people which obscures some critical aspects. We believe the report clearly shows that not only can the Government afford to support disabled people of all ages, but crucially as a society we can’t afford not to. It is now up to the Government to fund adult social care so that it gives disabled people of all ages quality of life. For deafblind people social care means communication and mobility support, not just personal care.”

Julia Unwin, the Chief Executive of JRF and the Joseph Rowntree Housing Trust (a non-for-profit provider of housing and care services): “Today marks the most concrete and credible step for years. I believe that the proposed reforms have the potential to bring about a radical step-change in how we value social care, how we think about disability, and how we all – as individuals and as a society – plan and prepare for longer lives.
It is positive to hear commitments from all the main parties to set aside party differences and consider the Dilnot report with the consideration it clearly warrants.
The JRF now urges the Coalition Government to abide by its promises to deliver a White Paper in the next six to nine months. It would be a tragedy for this, one of the most pressing and defining issues of our age, to be kicked, yet again, into the long grass.”

Jeremy Hughes, Chief Executive, Alzheimer’s Society: “Today’s welcome report could bring to an end the scandal of the colossal Dementia Tax where every year tens of thousands of families are left to pay all their care costs whilst other diseases are paid for by the NHS. The government mustn’t miss this opportunity to right a wrong that is destroying lives. In a new system we must end the postcode lottery that gives different support depending on local authority. The Dilnot Commission has given the coalition government the opportunity to show that it is a caring government. Pending implementation they must also show they care, protecting social care spending in the way they are doing for health.”

TUC General Secretary Brendan Barber: “The TUC welcomes the increase in funding for the care of the elderly over the next few years, and the news that social care will be free for those who become disabled before the age of 40.
“The introduction of a national eligibility assessment should avoid a ‘postcode lottery’ and make it possible for those receiving social care to move around the country without losing their care provision.
“The TUC believes that social care should be provided free for those who need it, and funded from general taxation. The Dilnot Commission’s proposals could, however, be transformed into this NHS model by continually reducing the level of the cap on care costs. The government must not set too high a cap – a level above £50,000 per person would mean that families could still face losing their homes to pay for the vital care they need.”

Gordon Morris, managing director of Age UK Enterprises: “The Dilnot commission report delivers a clear call to action to the financial services industry to work with government to develop the innovative products needed to fund long-term care. Existing products, such as equity release and annuities, could present a solution, but far more has to be done to build flexibility into these products to increase access and ensure these products evolve to meet changing financial needs.”

Stephen Burke, founder of social enterprise United for All Ages: “Under the commission’s regressive proposals, the winners would be richer families whose inheritance will be relatively protected, while most families will face a more confusing and potentially costly care system. The proposed cap on care costs will still result in some older people being forced to sell their homes to pay for care and related costs.
“The proposals aim to reform the current inadequate system for funding care. But they would lead to a more complex, fragmented and confusing care system … This could be seen as a care ‘poll tax’ for the so-called squeezed middle.”

An interesting reaction from by social workerSarah Smith“: “It is local authorities that take the hit from policies devised by central government, and we can only hope that all parties are brave enough to act together for the country’s interests rather than consider of their own chances at the ballot box. We deserve much better than that.”

Labour leader Ed Miliband: “The last thing Britain needs is for Andrew Dilnot’s proposals to be put into the long grass. We three party leaders are of similar age and the same ­generation. This is a once-in-a-generation opportunity which our generation must address.”

Which? executive director Richard Lloyd: “Consumers tell us that long-term care is their top health care priority* so we welcome these recommendations and urge the Government to act sooner rather than later. If private insurance is to play a part in funding long-term care, then we need to learn lessons from the past, where products have either failed to meet people’s needs or have been mis-sold. This will be a new market with a clean slate so it’s important that strong consumer protection is in place from the start.”

Michelle Mitchell, charity director at Age UK, tells the Guardian that the report set out “a clear blueprint” for sustainable reform. Production of a white paper by next spring was ambitious but achievable, Mitchell said. But she warned: “Delay beyond Easter would be indefensible.”

Mark Goldring, chief executive of learning disability charity Mencap, said: “Now is the time for monumental change and it is vital that the government does not bury social care reform.”

John Adams, Voluntary Organisations Disability Group (VODG) general secretary: “Today is about more simply demanding more money – vital though additional funding is – it is about urgent reform of a broken system. The Dilnot commission has taken great pains to build cross-party consensus; ministers now need to match the warm rhetoric with which they greeted today’s report with swift action. The government must find the courage to put its money where its mouth is, succeed where previous administrations have failed and exploit what Dilnot himself describes as a “once-in-a-lifetime opportunity” to create a fair and sustainable system of social care.”

Senior Fellow at The King’s Fund, Richard Humphries: “The budget deficit should not be used as a reason for inaction. This is a long-term issue and questions of affordability go beyond the current economic situation. The additional public expenditure needed to fund these proposals is less than 0.25 per cent of gross domestic product – this should not be too high a price to pay for providing a care system fit for the 21st century….Where they have failed in the past, politicians from all parties must now seize the best opportunity in a generation to ensure that people can access the care and support they deserve in later life.”

Su Sayer, learning disability charity United Response’s chief executive: “The report’s recommendations are the first step towards creating a better system which ensures that people in need of care receive it, funded in a way that is not only fair, but seen to be fair….Whether viewing this economically or morally, we cannot afford to ignore these recommendations, which is why we urge all political parties to work together towards a better social care system for all.”

Guy Parckar, acting director of policy, campaigns and communications at Leonard Cheshire Disability: “The system as it stands is creaking at the seams, with more and more people missing out on the care that they need. This report must be seen as a clear call for action. All of the political parties must come together with one agenda and that is to agree a fairer settlement for social care. We cannot go on with disabled and older people missing out on care because of a system that simply cannot cope with the demands placed upon it…Too often disabled people with significant social care needs can be charged into poverty by our social care system. People are unable to work, unable to save, unable to buy a home as any income or assets will simply be taken to cover the costs of care. This is a critically important recommendation that could make an immense difference, and it is absolutely imperative that the Government acts on it.”

Domini Gunn, Chartered Institute of Housing (CIH) Director of Public Health and Vulnerable Communities: “In reforming the funding of social care, we urge the government to follow Dilnot’s recommendation to review the scope for improving the integration of adult social care with wider care and support system. This must include housing, and housing support, providers and could help drive a more preventative approach, incentivised through funding arrangements.”

Sir Stuart Etherington, Chief Executive of NCVO: “This review makes major strides towards identifying how we can achieve an affordable, sustainable and fair funding system for all adults in the UK. The challenge now falls to all parties to resist turning the review into a political football and to prioritise responding swiftly and decisively. It is the most vulnerable who will suffer if we cannot seize this golden opportunity to improve the funding of adult social care.”