Another debate that has been very much “in the air” recently, is about whether or not groups of people who come together to pursue a common goal should receive more formalised support, particularly in the early stages. This could apply to any type of voluntary group, not just those focusing on mental health issues. Just because individuals decide they want to work together to campaign, for example, for better or different services, does not necessarily mean that they have the skills required to set up, run and sustain the group.
Working at Powys Association of Voluntary Organisations for the last few years I have come across many people volunteering across all spheres – health, the arts, heritage, sport and more. The one thing which brings them together is their passion – in my own case, volunteering for The Quilt Association in Llanidloes, it is a love of quilts both old and new that is the common bond. In mental health people might want to press for new services in a particular geographical area, or provide support for a specific group such as carers, for example.
But... what all these people (including me), with their diverse range of interests and skills and goals, suddenly find they also have in common – is the need to skill-up fairly quickly on the day-to-day basics of running and maintaining a group and the implications that has for them all. This is particularly the case for those groups which decide to become charities, where legal and financial responsibilities can create a lot of work – work which has absolutely nothing to do with the original reason why the group was set up!
So, whether promoting heritage quilts or campaigning for increased mental health services... we suddenly all need chairs, treasurers, secretaries and incredibly hard-working individuals who don’t mind finding out the nitty-gritty about insurance, equal opportunities policies, expense procedures and so it goes on...
The question is, should some of these groups – in the area of health often referred to as “user-led organisations” - be provided with a paid development worker in the early stages to help them? According to the Social Care Institute for Excellence (SCIE) “strong user-led organisations help commissioners tackle inequality, build social capital, contribute to prevention, and be more responsive to the local community.” You can read some of the guidance given to people commissioning services to develop and strengthen these organisations here.
What do you think? Are you involved in a voluntary group yourself, or thinking of setting one up? (Wales Council for Voluntary Action has useful information hereif you are).And if you believe paid support is required on a regular basis – who is going to fund it?
PS: Whilst reading around the issues for this post I discovered that the Office for Disability Issues has a Strengthening Disabled People’s User-Led Organisations Programme - short-term grants to groups in the UK. “The programme is a £3 million investment over four years (until 2015) that will aim to promote growth and improve the sustainability of DPULOs.”You can find specific advice for organisations based in Wales here.
Senin, 27 Mei 2013
In a post-Francis* world where institutional neglect and cruelty towards some of our most vulnerable citizens has been exposed, A Bird in a Gilded Cage suggests that the arts might offer something of an antidote to the way we support people affected by memory loss. This is a gentle polemic that sweetly kicks the ankles of those obsessed with understanding the impact of the arts on human wellbeing through crude pseudo-scientific measurements, placing creativity, culture and the arts at the heart of a conversation about quality of life.
*The final report into the care provided by Mid Staffordshire NHS Foundation Trust. The Inquiry Chairman, Robert Francis QC, concluded that patients were routinely neglected by a Trust that was preoccupied with cost cutting, targets and processes and which lost sight of its fundamental responsibility to provide safe care. His final report is based on evidence from over 900 patients and families who contacted the Inquiry with their views. http://www.midstaffsinquiry.com/index.html
In case you are wondering – “where have the wonderful plasticine pictures gone?” - then let me explain. Jackie has temporally handed the "blog reins" over to me for this week’s blog, and artistic I am not.
So instead you get a picture of my hero, Thomas Szasz, who sadly died last year on September 8th 2012, My hero because his ideas changed the way I think about a lot of things in life, and his picture because of a debate that seems to be becoming more prevalent.
In my earlier blog this year I talked about the mobile phone restriction at our local psychiatric hospital, no comments yet I can only tell (fool) myself that you are reading in silence. Today I just want to start to explore the question: Are the mainstream ideas underpinning mental illness diagnosis as sound as we presume?
This week was a very interesting one for me, there seems to have been something in the air (certainly not summer), I have been involved in many stimulating conversations with colleagues from across Powys discussing the validity of mental illness diagnosis.
Well Jackie got us going! In her last blog, she mentioned an interview with Dr Lucy Johnstone on the Today Programme in which she discussed new research suggesting that there is no scientific evidence that psychiatric diagnoses are valid.
Eleanor Longden talked at a conference we organised in Powys (more information here) last year and one underpinning idea that I took away was that we need for more debate on the validity of mental illness diagnosis.
The American Psychiatric Association's publication of Diagnostic and Statistical Manual of Mental Disorders 5 (DSM5) has sparked controversy. It has led to the creation of the International DSM5 Response Committee and their world-wide online petition arguing that DSM5 should not be adopted and used.
So what would all this mean? What if the mainstream ideas underpinning mental illness diagnosis are just not correct? Within our lifetime will we see a paradigm shift in the conventional wisdom surrounding mental distress?
What would this shift look like? Would it start with us changing the question that underpins the mainstream mental health services from "what is wrong with you" to "what has happened to you"?
What would that mean to those of us that perhaps take benefit from finally being given a reason, a medical diagnosis, from the experts for why things have been so difficult? How would people access services, support, welfare benefits if there were no diagnosis for mental distress? In schools how would children access the extra support they need, again if there were no mental illness diagnosis? Would this change the justification supporting the Mental Health Act and some of the ideas underpinning it around personal responsibility?
Just some of the many questions that spring to mind! I’d love to hear what you think and whether this is a debate that you are having with people close to you?
I'll sign off now with a hope for some sun this weekend and with a quote that feels very relevant to this debate: "There are only two mistakes one can make along the road to truth; not going all the way, and not starting" Buddha
How was it for you? For me, it was great hearing mental health being so prominent in the mainstream media - if only we could make every week Mental Health Awareness Week! Naturally I "got physical" but we won't go there in this post... Instead, here are some of my highlights from the past week:
1. John Humphrys on the Radio 4 Today programme, on Monday 13 May (listen here) The day before he won a Sony Radio Award, and the programme won Best Breakfast programme award (yes, you can just tell I wake up to this every day...) Anyway, he was speaking to Dr Lucy Johnstone, a consultant clinical psychologist. She referred to new research which says that there is no scientific evidence that psychiatric diagnoses such as schizophrenia and bipolar are useful... John tried describing schizophrenia as a disease, then a disorder... and then when Lucy challenged both I could just picture him throwing his hands in the air as he exclaimed - well then he was struggling to find the vocabulary! Lucy said: "instead of asking what is wrong with you we should ask what has happened to you." Brilliant stuff!
2. Start the Week followed hot on John's heels with Music & the Mind, Monday 13 May An excellent opportunity to hear two of the country's leading experts of the mind head to head. Richard Bentall is Professor of Clinical Psychology at the University of Liverpool, whilst Tom Burns is the Professor of Social Psychiatry at the University of Oxford. Tom is just about to publish Our Necessary Shadow, a defence of psychiatry, and according to the programme a direct response to Richard's Doctoring the Mind: why psychiatric treatments fail. One of the most shocking statistics Richard quoted was that 1 in 7 people in Scotland are taking anti-depressants according to a recent study... "well, it gets people out of the GP surgery in 6 minutes..." Listen to the programme and see what you think. 3. Do famous role models help or hinder? Tuesday 14 May Mark Brown, who edits One in Four magazine (a quarterly magazine written by people with "mental health difficulties,") wrote an intriguing piece on the BBC website about this. Do stories of Winston Churchill and his famous black dog, or more recently, Stephen Fry's bipolar tales, inspire or deflate people experiencing their own mental distress? Check out the comments section for some really interesting observations. 4. The Big Mental Health debate, Thursday 16 May MPs debated mental health for 4 whole hours in the House of Commons on Thursday. I watched a large chunk of it live online, and for those with stamina you can read through the debate word-for-word on Hansard here. Paul Burstow MP introduced the debate, saying "there can be no health without mental health", and there followed a very wide-ranging and in-depth debate. Issues covered included the value of lived experience, war veterans and Post Traumatic Stress Disorder, dementia, the mental health of prisoners, and a detailed look at eating disorders. Some of the key themes which emerged were:
The need for crisis care for those experiencing mental distress to be on a par with services provided for those with physical needs.
The recognition that the voluntary sector has a huge role to play, and that the innovative and supportive approach of many groups is extremely successful. However, there is a cost involved - "we should not see community care as the cheap option."
The Minister of State for Care & Support, Norman Lamb, rounded off the debate by announcing the setting up of a working group to look at how to improve access and equality to mental health services. But perhaps the most valuable thing achieved on the day was that MPs debated mental health for the second time in a year. Charles Walker, one of the MPs who spoke of his own personal experience of mental distress at the June 2012 debate, said today: "In a sense, the lid has been lifted. People now feel much more confident speaking not only of their own mental health experiences, but of mental health in general, and the hopes, aspirations, fears and expectations of their constituents."
AJ, who has volunteered at the mental health charity Ponthafren Association in North Powys for many years, talks to us at Powys Mental Health about the regular weekly music therapy session he set up in 2005.
When does the music therapy take place at Ponthafren in Newtown?
On Thursday nights, between 5 – 6.30pm, the sounds of the music therapy group at Ponthafren emerge. Up to 6 – 8 members attend weekly, from a guitar player – myself – who writes and composes songs and runs the group, to a member who plays bass guitar and several other instruments such as keyboards. One musician makes his own instruments. He made a three stringed guitar out of a cigar box. It’s electric and he plays lead guitar on it. He also plays a banjo and a mandolin. We play electric for three weeks, and acoustic for the next three, and alternate the two. Anyone who is interested can turn up on the day – it is not regimented, they can turn up and leave when they want.
Why did you set up the music therapy session originally?
Because I was a musician and I thought it would be a good idea to pass on some of my talents to other people. I don’t teach guitar in music therapy, but if anyone wanted it taught I would outside the session. It also helps my mental health. I suffer from depression, anxiety and stress and for 1.5 hours of my life I’m doing something I enjoy and my brain works in a different way. I can ask someone for three music chords and I can put that into a song and compose words out of my head. I can ask for a subject, someone can give me a subject, and I can sing a song about it off cuff. People will stand in amazement because this song has just come out of my head. I am asked how I do it but I have no idea. That takes me away from everyday stresses and strains, which is why I volunteer.
What actually happens during the session?
We start at 5pm. For part of it, this is where the other people come into it, I will play a song first and I will shout the chords out and the others will play along with me although they don’t know what I will play. They follow me – look at my fingers and follow the chords and get the song.
For the second part – I have “copy songs” that people know and they will follow me as I sing them and also play them on their instruments. Mainly - it’s fun. If somebody comes and plays completely out of tune – so what. They will get it in the end, they are there and they will enjoy themselves.
What is the reaction of those who attend the music therapy?
I am told by people that music makes you feel better than loads of pills.
I have actually taught someone from scratch – he’s been learning guitar for a year, he now comes to the music therapy groups and joins in and he also sings his own songs which he has created himself. It has opened a fantastic door for him because his family are musicians and he was always left on the sidelines. Now they have invited him in. He also suffers from mental helath problems and it has helped him tremendously.
People say after the 1.5 hours – "thank you!" I get texts from people who have just been, saying – "I feel great, I really enjoyed that." What more do you need?
Thank you, AJ, for talking to us! And if you want to tell us about your experiences of music, and how it has impacted on your mental health, please either add a comment or get in touch - we'd love to hear from you.
8th July – 16th August 2013 * * * * DETAILS COMING SOON
Wagnerian Delirium
Some very interesting reports coming in from Germany around the Düsseldorf opera house's production of Wagner's Tannhäuser directed by Burkhard Kosinski. The romantic opera was written in the 1840’s and set (in the mind of Wagner) in the middle ages. Kosinski chose to transpose it to 1940’s Germany under Nazi rule with depictions of mass murder, the gas chambers and SS executions.
There have been reports of people storming out of the theatre, booing and slamming doors - so much so in fact, that the staging has been pulled and it is now being performed purely as a concert.
The furore on the internet has been prolific, with Oxford University historian, James Kennaway telling the Guardian: "Wagner's operas have often produced extreme reactions and the list of singers, conductors and patrons who have keeled over dead after attending one and suffered a 'Wagnerian delirium' is amazing."
Debate over Wagner’s place in German culture has escalated coinciding with what would have been his 200th birthday on May 22nd. For many, Wagner has come to symbolise the seeds of anti-Semitic sentiment in German culture that would grow into the Nazi terror. A recent article in Der Spiegel commented, “Richard Wagner’s legacy prompts the question: Can Germans enjoy any part of their history in a carefree way?”
In the Guardian this weekend, Will Self suggested that, “Hitler was indeed a great music lover – get over it! He could be one, and still prosecute the deaths of untold millions by word and deed. Hitler loved music because many humans – including evil ones – love music. He loved Wagner's music both despite and because Wagner was an antisemite – it all just fed into the semiotic mix.”
The timing of the doomed opera has coincided with the high-profile trial of neo-Nazi’s which began in Munich last week, with Beate Zschaepe being charged with a series of anti-immigrant murders, and where we can witness a bizarre and superficial media frenzy focused as much on Zschaepe's looks, as for the crimes she’s allegedly committed.
I can’t help being a little curious about what Self describes as “an assumed sharp dichotomy between high and low art, and a privileging of the discourse of the former.” Cinema goers have largely relished the excuse to cathartically grind their teeth to Schindler’s List, been remorselessly subsumed in In the Fog, or else heartily relish the extremes of Inglourious Basterds. There’s no shortage of literature that would provoke a similar range of responses and the response to Jake and Dino’s Chapman’s, Hell from some quarters, at least - was profound, with Jonathan Jones describing it as a ‘true masterpiece.’
Inequalities and denial spring to mind here and something about the gated community of an elite cultural psyche. Perhaps this version of Tannhäuser was tasteless and badly conceived? Kosminski, declined to make changes to soften the impact of the violence saying that he had been completely transparent with the opera house about his intent for the production and that he was not a “scandal director.” “It would be good if the debate continued,” Mr. Kosminski said, “and we learned what the underlying reasons were for this great emotionality.” Not perhaps art and health on an individual level, but a deeply fascinating issue.
So a question: is the portrayal of Nazi Germany permitted in popular culture and other art forms, but somehow best avoided in more genteel cultural circles?
farmgate
Food production systems in Britain today are very much dictated by laws, regulations and other policies, all of which are geared toward supporting 'Big Dairy' ie the dairy farmers that milk hundreds and thousands of cows every day. Sadly, the modern approach or corporate take over of milk production and distribution is very much to the detriment of smaller producers and farmers here in Britain and around the world. The decline of the British dairy farmer in recent years has accelerated at a significant and worrying rate.
In the past ten years, the number of dairy farms in England and Wales has fallen by 46.3%. from approximately 20,000 in 2002 to just over 10,000 in 2012. (Dairy Statistics: An insider Guide Pg 10, published by DairyCo, 2012)
The truth is, that the farming crisis in Britain is a direct result of the global restructuring of food markets and industries which has been ongoing since the early 80's. As a result of these new global food systems, agricultural produce, over the years, has become cheaper and primary commodities such as milk, even though demand has increased, the return to the farmer has not. British dairy farmers receive less today per litre of milk, than they did 17 years ago; and they continue to receive less per litre, than it actually costs them to produce. Further afield and also unable to break even, increasing numbers of frustrated and desperate small scale farmers across the globe watch demand for fresh produce increase, but without reaping any rewards. With the British dairy industry there appears to be a blockage; profits from sales are not trickling back down to the producers but pooling somewhere between (larger) processors and vendors.
A deeply worrying statement came from Tim Fortesque, Secretary General of the UK Food and Drinks Industries Council, quoted as saying:
“It is not the role of manufacturing industry to improve the health of the general public or to shoulder the responsibility of ensuring that people live longer, or lead healthier lives”
It is time that we, the modern consumer started to consciously understand methods of food production and question what role we actually play regards the shift towards industrialised farming and globalised food systems; and what exactly will the future landscape of the British countryside look like as the small farmers disappear and the factory farms take over?
Dawn Prescott’s exhibition 'Farmgate' is at BLANKSPACE between 24 - 26 May explores the plight of the British dairy farmer. The work investigates modern methods of milk production and distribution as we witness an ongoing shift towards the industrialisation of dairy farming and the rise of the 'Mega Farm'.
What on earth does this little film have to do with arts and health? Find out very soon in Mortality: Death and the Imagination
By coincidence, there are two back-to-back Awareness Weeks this month trying to get us walking (and exercising generally) more regularly as a way of improving our mental (and physical) health. We're already four days into the first - which is Get Walking Week, 4 - 11 May. A Ramblers' survey found that "a quarter of adults walk for no more than one hour each week." Yet, according to Dr Stuart Biddle, professor of physical activity and health at Loughborough University, there is "long-standing evidence to support a link between walking and mental health benefits.... Walking can elevate a person's mood, lessen feelings of depression and allow a person to think more clearly."
So, what did you do for the bank holiday if you didn’t have to work? Did you walk anywhere? Did it make you feel better? And if so do you plan to continue walking regularly for health, pleasure or both?
Next week is Mental Health Awareness Week 13 - 19 May (OK, you have a day off to rest on 12 May!) Promoted annually by the Mental Health Foundation, this year the theme just happens to be "physical exercise and activity, highlighting the impact they have on mental health and wellbeing."
But if you’re just starting out and fancy some company on your walks, try these Trail Tempters - free guided walks in various parts of Powys, anything from 1.25 - 7 miles - and chance to chat to other walkers too.
The sun is out, the skies are blue and the hills are green and beckoning... now I just need to persuade Laura that I should be out there doing real research about the benefits of walking to my mental health...
Short and sweet this week and straight on to business. Just a note that Ivan Wadeson, Co-Chief Executive of The Audience Agency, responded to Culture Secretary Maria Miller's speech last week in diplomatic style and pulling out some key comments that Ms Miller has made, particularly:
“The arts stimulate us, educate us, challenge and amuse us […] their social benefits are numerous and beyond doubt.”
“Culture is able to deliver things which few other sectors can. It brings our country to life and encourages people to visit our shores; it develops a sense of community and attracts visitors to disparate parts of our nation... it cultivates the creativity which underpins our wider industrial efforts.”
“The arts are not an add-on; they are fundamental to our success as a nation.”
You can read Ivan’s comments by clicking on the empty theatre seats.
Thanks to my friend Dr. R for his updates on all things BMJ and RSPH and for last weekends article about trumpet playing conservative MP, Jesse Norman. Once ostracised for his rebellious ways, he has been welcomed back to the heart of politics as a member of his party’s policy advisory board. It’s a curious article not least because Norman is one of the architects of the Big Society agenda and is a man who has a lot to say, including attacking crony capitalism. He is particularly keen that the government should do more to support the arts, suggesting that an interesting test will be met when we emerge from the financial crisis and there is money to spend which could possibly be ploughed into new ways of promoting social cohesion. My eyes were particularly drawn to a very pithy quote: “I don’t think anything important can be quantified - you can’t put a pound sign beside love and happiness.” I wonder perhaps, is the time right to be thinking about the ways in which our arts and public health agenda should be woven into a far more sophisticated policy framework?
I try not to advertise too many events that cost on this blog, but this years annual conference form The Reader is a 1/3 cheaper than last year! It has a great programme with some interesting speakers, of which Andy Burnham MP, Shadow Health Secretary, will be discussing ‘The Books that Built Me’ at the event taking place at the British Library on Thursday 16th May. Other speakers at the conference include Professor Louis Appleby, National Clinical Director for Offender Health and Chair of the National Suicide Prevention Advisory Group, who will be discussing ‘Finding A New Language for Mental Health’. Find out more by clicking on the plea to read me, above.
Last week saw the first teaser for my new paper, A Bird in a Gilded Cage - but what on earth was it about? The royal family - battery farms - synchronised swimming and wistful coach rides into the sunset? You bet - oh, that and the way we live and die today. Above is another version of that same little film with a few words thrown in for good measure. The paper will be on ixia’s website this month.
WE DO
Hey, in the dead of night, do you ever wake up and wonder, what ever happened to Open Art? We do. To find out what the brilliant Deborah Munt and Leisa Gray and their colleagues did next, click on the love above for more.
FARMGATE
For many years Dawn Prescott worked at Arts for Health where she ran a tight ship, and when she left for pastures new, it was LIME Arts that benefited from her superb skills and warmth. Now Dawn is holding her first exhibition at BLANKSPACE between 24 - 26 May. The exhibition farmgate is a work that explores the plight of the contemporary British dairy farmer. I’ll post more details of this exhibition next week, but pop it in your diary if you’re anywhere near Manchester later in the month.
Big Launches New Programme to Improve Lives of Older People
The Big Lottery Fund (BIG) has announced a new fund to improve the lives of vulnerable older people in England. The BIG hopes that the funding, provided through the Fulfilling Lives: Ageing Better programme, will reduce isolation, help older people deal better with change and build confidence for the future. BIG are inviting 100 local authorities to submit an expression of interest to be considered for funding. 30 areas will be shortlisted. The shortlisted areas will then be required to submit a full 'vision and strategy' for their area. At this stage each area will form a partnership led by a voluntary and community sector organisation. BIG expect to make awards to 15 to 20 areas of between £2 and £6 million over three to six years. Development funding of up to £20,000 will be available to those areas we shortlist. The closing date for submission of EOI forms is the 17th May 2013. Read more at:
Principal fires security guards to hire art teachers — and transforms elementary school
...and finally, a big thanks to Kait Wittig for sharing this story from the US.
Orchard Gardens School in Roxbury, Massachusetts was built in 2003 but was plagued by violence and disorder from the start and by 2010 it was rank in the bottom five of all public schools in the state. Enter Andrew Bott — the sixth principal in seven years — but with new ideas: “We got rid of the security guards,” said Bott, who reinvested all the money used for security infrastructure into the arts. Now, three years later, the school is almost unrecognisable. You can read more here, by clicking on the comforting image of school security above.
