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Joe's tackling poverty, inequality and rubbish blog

This coalition government is the pits. When they closed down my local mental health block in Ealing Hospital and two major mental health daycentre. The horror and destructiveness to ordinary people became obvious.

Recently I did this Photo Collage using google images and the copy and paste function on my word windows document software. Asserting Article 21 of the CRPD Convention of the Rights of Persons with Disability. That is about self-expression and access to useful information. 

I proceeded devising the following collage. From left to right and top to bottom down the page this is what I clicked.

Scratch–Scratch cards
I often see at the supermarket cigarette counter. Poor people buying these cards to gamble and get out of poverty. They are more likely to make the Lottery owner richer and themselves poorer. SCRATCH seems to sum it up.

George Osborne not Ossie Osborne
The chancellor seems to embody all the nastiness of this Com/Dem Coalition. Help the rich and screw the poor.

Boris ‘on yer bike’ Hitler.
Looks like Benny Hill on a bad day. Mayor of London. Should I move out of London? Sorry I’ll stick it out. Maybe he’ll be defeated at the next election?

Black rubbish sacks
They seem to embody this crap administration

Payday loan companies.
They seem to be everywhere, even on TV. I thought it was TOXIC LOANS that got us into THE BANKING CRISIS MESS.

Foodbanks 
I hear that a new foodbank opens every week somewhere in the country. They are expanding faster than Subways or Costa Coffee [£3 a cup].

Poundshops
West Ealing has a ‘97p Shop’. I think they are racing to the bottom?

NHS Dentistry
Many of my friends have similar teeth missing. Missing front teeth is called Cosmetic dentistry and that costs. So you can tell the poor by their poor teeth.

CCTV
Last week I counted 10 cameras on my bus. It would be cheaper for  BBC or ITV to buy a bus than build new studios?

Drones
These mini aircraft have remote firepower. Which means theoretically anyone out of doors can be assinated by such a device. Bit scary?

Banks
I don’t fully understand the entire banking situation. No TV channel is in a hurry to explain all about banking. Plenty of rubbish about selling antiques, cooking a meal, moving to the country but no. BANKING SCANDAL EXPLAINED?

So have a nice day, don’t worry it may never happen, Hope not?

All the best 

JoeJ +

Posted by Colin Hambrook, 3 February 2014

Last modified by Colin Hambrook, 3 February 2014

Joe Kelly on The Blame Game

Few, if any, people in public life take responsibly any more. Nobody resigns, falls on their sword or does the decent thing. The Lloyd’s motto: ‘my word is my bond’ should be a proverb for public life.

In recent years many have fallen from grace including expense frauding MP’s, hacking journalists, paedophile priests, dodgy bankers, under achieving NHS executives, the metropolitan police and some BBC disc jockeys. Perhaps there are even more scurrying for the exit.

While others maintain a nervous silence the finger of blame is pointed at the shirkers. Those that receive state benefit. The unemployed, the disabled the old and infirm. My group the disabled or more accurately the mental health service users are doubly stigmatised. Being already stigmatised for our health problem. We are easy meat for the mean spirited predator.

Personally I would willingly to take the blame on the chin if I felt I were responsible. However I think the blame lies elsewhere further up the food chain with the authorities and organs of power. In contrast with PM David Cameron’s words: ‘The NHS is safe in our hands’ – we’ve recently seen the West London Mental Health Trust close the John Conolly Unit, now awaiting demolition, previously upgraded with a £6 million refit housing 120 beds. As I write two women’s wards are closing in the main St Bernard’s wing. Two day centres have already gone. Not to mention the threat to A+E.

Mental health service users are an easy group to marshal, and easy to prey upon. Not highly organized, we are sitting ducks. It would be hard to find a group in society with less power and influence. Surprisingly service users play no part in the commissioning of services and service users play no part in the decision making of the service. We play a small role in a feedback process called ‘User Involvement.’ By modern standards a very tokenistic  process.

Mental health services generally have been very apathetic, and not particularly good at rehabilitating people back to work. I think the figures are about 20% of their intake. Not a difficult group to blame or pass the buck upon.

Looking closely at the WLMH trust and the chain of command, one Doctor recently had three suicides on his watch, yet retired with a full pension. A poor Care Quality Commission [another public body under performing] report a few years ago also included numerous suicides in the forensic section. There was some reform in the pipeline, but too little, too late.

I would like to defend the dignity of Disabled People, and in particular mental health service users, against this nasty blame culture. Mental health Service Users/Survivors are not intrinsically a separate group we are indeed from every part of the community, every race, every religion from Smith to Lord Roseberry. What goes around comes around. Today your neighbour, tomorrow you.

‘The buck ends here’ was the slogan of President Harry Wilson in the USA but where does it end in the UK I ask?

Posted by Colin Hambrook, 14 August 2013

Last modified by Colin Hambrook, 14 August 2013

Joe's recommended internet viewing for World Mental Health Day

Article 21: Freedom of expression and opinion, and access to information states parties shall take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice, as defined in article 2 of the present Convention.

The quote above is from the United Nations official website  referring to our Disability Rights. 'State parties' refers to the government and their agents. For me as a creative person, an artist and poet self-expression is fundamental to good health and well-being. Also important is access to important information so the individual can make informed choices about their care and welfare.

If information or knowledge is restricted then choice is also restricted. The danger that you only receive the official version and not receive the full picture is a potential hazard to our health and well being. Article 21 protects that right. Trouble is not everybody knows that or indeed their full human rights.

I’ve spent sometime on YouTube looking up important speakers and thinkers in Mental Health. This is not a finite list but merely a work in progress list. Do excuse me for including myself on the list.

So please put the cat out brew up a nice mug of tea and have a look at my recommended viewing list on Youtube. Happy viewing

Dr Pat Bracken’s talk in Denmark
http://www.youtube.com/watch?v=cV5RKT6Q8qU

Gail Hornstein’s talk at Birmingham University [dissected into short excerpts]
http://www.youtube.com/watch?v=SKzO1pwIHHE
http://www.youtube.com/watch?v=grOPYw2fZUg

John McCarthy [deceased] Mad Pride Ireland
http://www.youtube.com/watch?v=RfRXOOyMJxI

Rufus May 'the doctor who hears voices'
http://www.youtube.com/watch?v=Ffw0pyAjiCw

Footsteps ‘the movie’
http://www.youtube.com/watch?v=eN75iNdDWTU

Daniel Mackler’s film exerts from ‘Take these broken Wings’
http://www.youtube.com/watch?v=IN1yDZqibQQ
http://www.youtube.com/watch?v=qnzIlwLDBY4
http://www.youtube.com/watch?v=dddksUbXuVs
http://www.youtube.com/watch?v=Y3d7bPcw5uM
http://www.youtube.com/watch?v=73Dx_uuyXYk
http://www.youtube.com/watch?v=Qj8Kcj1BAno

Evolving Minds
http://www.youtube.com/watch?v=h12_kRYITTA

PS- Please feel free to contact me at art21crpd[at]gmail.com

Posted by Colin Hambrook, 9 October 2012

Last modified by Colin Hambrook, 9 October 2012

Talking futher about a new vision of disability

On Thursday 9/08/12 I travelled to Leicester as guest speaker for the AGM of RECOVERY which you can watch on youtube. This is an outline of my talk.

I’d like to start by quoting three quotations: ‘Our Deepest Fear’ by Marianne Williamson from ‘A Return To Love,’ ‘Reflections on the Principles of A Course in Miracles’

This quotation was used by Nelson Mandela at his inauguration as President of South Africa: “Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

For me this crystallises the possibilities of human development and potential: ‘Where there is no vision the people perish’ [Book of Proverbs 29-18]. Which emphasises the pressing need for vision in our movement. Let's get rid of this horrible ‘medical model’ in mental health care and replace it with humane treatments. Anonymous and everyone I know

The Main points I raised were.
1. Intro about me and my CV- service user survivor, expert by experience, worked in films, horticulture and nature conservation, community artist, poet in residence, founder of an arts charity called Footsteps Arts currently disability campaigner to get justice for our people. Campaigning on Social networks including DAO Disability Arts Online and Facebook and Sometimes Linkedin. Fellow of the RSA

2. Proposing a new vision of disability-all the disabilities physical, mental and learning difficulties. Unity and common purpose, social justice and quality of life. More of a movement and less of a collection of groups and charities.

3. We should be setting the agenda-being pro active, taking the initiative. Using our knowledge and skill often much better than the so-called normals or able/bodied who are often ignorant and patronising.

4. Challenge the cuts, assets stripping apathy, poor performance and downsizinling the public sector.

5. We are part of the freedom movement, following a distinguished lineage- mahatma Ghandi, martin Luther king jnr and nelson Mandela to mention but a few. We need to be DISABILITY PROUD.

6. Need to master the media both old and new to win the hearts and minds of ordinary people. Currently we have Ruby Wax and Stephen Fry raising the banner for mental health and disability. Some projects like RECOVERY from Leicester are investing in the new media. And Footsteps Arts in London.

7. Work and work capability. If people are on long-term disability they should be helped to work by kindness and support not bullying. Statistically most disabled would prefer to work. Not to be put down scapegoat as work shy. Long term disabled should have proper OT.
Need invest in disabled social entrepreneurs.

8. Stigma or discrimination. I think it’s at it’s worse in the health industry. Institutional Discrimination.

9. Creativity: probably one of our best cards. Why don’t we try to capitalise on this skill.

10. Improve user involvement. Originally a tool to give voice to the unheard. Perhaps now it should be reviewed and evaluated to see if it is delivering. Measuring quality. Is it independent does it have a free voice?

11. PR: design a flag or emblems for our movement-should we not make some and could we change the language. Should words like ‘service user’ and ‘schizophrenia’, ’paranoia’ go in the rubbish bin? Can we make a new lexicon of names and terms more complimentary and less contentious?

12. Claim our full human rights: CRPD Convention on the rights of persons with disability. There are 50 articles not fully integrated into our legal system.

13. To develop organically making the most of our knowledge and talent.

14. Follow the lead of inspiring speaker on ted.com people like Aimee Mullins disabled athlete from the USA talking about the challenge of adversity

Sir Ken Robinson talking about creativity and personal development 

Srdja popovic talking about people power on the university curriculum in Serbia

15. With money, we need to get beyond our usual thinking. Ideas like ethical branding, joint finance deals and marketing our skills more.

16. Goals: develop a online community ‘think tank ‘using skype telecom-work towards a summit conference on 2013- work towards a cabinet of disability groups-with a spokesperson for better representation.

17. I’m making a personal commitment to peruse these ideals to create a new vision of disability to pursue social justice and improve the quality of disabled people lives. PJK 14/08/12

Posted by Colin Hambrook, 15 August 2012

Last modified by Colin Hambrook, 15 August 2012

A chance to look again at this thing called Disability

A song: 'Morning has broken' - Cat Stevens
http://www.youtube.com/watch?v=U5sSEkZ86tsv

A quote: "Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be." - Marsha Petrie Sue from www.boardofwisdom.com

A chance to look again at this thing called disability!. I do believe some of our common experience is created more by carers, health officials and admin people. More about constructing an institution, which inhibits us, more than enable us.

There was a good response to my last blog. I think today I only want to ask one question. What do you think is the main issue facing you as a disabled person?

I definitely will get back to all correspondents
 

Posted by Colin Hambrook, 13 July 2012

Last modified by Colin Hambrook, 15 July 2012

New Vision of Disability

A WORD
‘Where there is no vision the people perish’ proverbs 29-18

A SONG
http://www.youtube.com/watch?v=ZvkvAXXuS58

THE STATEMENT
Since leaving Footsteps Arts two years ago I have been campaigning for a better deal for mental health service users and in the process realising the need for a new approach to disability. Pan disability uniting all the disabilities including people, mental health problems with physical disabilities, those with learning disabilities and also vulnerable people.

I’ve started an online discussion group and I need some expert advice from experienced people from physical and intellectual disabilities backgrounds plus fellow travellers.

I have the support of Footsteps Arts, Ealing Centre for Independent Living (ECIL), Paranoia Network, and Disability Politics UK. Also to approach my RSA fellowship associates. I intend to gather all the ideas together to create a report and invite all the major players to have a important conference in the summer of 2013. Some of the topics already included in our working document are: -

• I have a dream- martin Luther king
• Unity and greater solidarity
• Pluralism
• New charter
• Human rights
• Disabled tube map
• New needs
• Pan disabilities
• R&D-step outside the box
• Spokesperson
• Long term planning
• Pro-active, Cando
• Celebrate achievement
• Address poverty
• Ethical brands- disability, and spending power
• Symbolism
• D day template
• Positive image
• Review user involvement process and funding manipulation
• New & old media presence
• Expert-by-experience validity
• Sheltered workshops
• Summit conference
• Language
• Unity and greater solidarity
• Follow new thinking on campaigning

‘A New Vision of Disability’ to creating new possibilities for a better world.

Posted by Colin Hambrook, 3 July 2012

Last modified by Colin Hambrook, 3 July 2012

Can we trust the Trust? The changing landscape of welfare reform!

Serious questions are beginning to emerge about future healthcare for people with Mental Health difficulties in West London. The under-performing West London Mental Health Trust, severely criticised in the recent Care Quality Commission Reports, is probably to be merged with the Central and North West NHS Foundation Trust or another Trust? An alternative plan of action is unfolding as various serious problems emerge. The West London Mental Health Trust as Chief Executive Peter Cubbons, who is now on long-term sick leave, is due to step down together with two of his main Senior Managers leaving the WLMH Trust.


Coalition Government NHS reforms are becoming evident; testing the good sense of local people in Ealing, Hammersmith and Hounslow, which is the catchment area of the Trust. In particular the John Conolly Wing, serving the ordinary mental health patients is to be demolished as part of a rebuilding programme for the benefit of forensic service. The forensic service is a separate service for the mental health patients who have been sentenced by the law courts. The John Conolly unit has recently been refurbished costing £6 million. This is a massive waste of public money and resources.

Nearby some of the old St Bernards Victorian Buildings, which are of heritage quality such as the WLMH Trust HQ, The St Bernard’s Church with its and Magnolia Lodge are to be asset stripped and sold off as residential dwellings no longer serving the Ealing public. I noticed that the ornamental ironwork disappeared without mention sometime ago. A foreboding of things to come. Many of the remaining buildings are to be demolished for redevelopment.

Service users have had no opportunity to input or participate in this process. As a service user survivor we often feel the need to show good faith, from today I think those in authority need to show good faith to the service users? These acts, and the lock of openness, are a demonstration of the breaking trust between the authorities the patients.


Some years ago in another merger Broadmoor Hospital was merged with St Bernard’s Hospital. Medium secure forensic patients are helped on the St Bernards site. If you visit the rear of the site you will see the various buildings with high fences and CCTV.


Now the Broadmoor forensic service seems to be the dominant partner in this partnership. Consequently ordinary, non-forensic, mental health patients are loosing out. The Broadmoor take over of the site is a trend that is hard to understand or know the full story? This is a massive unexpected change, which highlight important policy changes not being shared with the public.


The Trust is to become a Foundation Trust in 2013. In order to accomplish this the Trust needs to sign up 1200 members, recruit more support from users and carers. Being disproportionately forensic to mainstream mental health is a legislative barrier that is to be changed by The Government in a new round of new laws in 2013.

Those who know the site will know that Ealing Hospital [The General Hospital, non psychiatric] also uses the eastern end of the site. Ealing Hospital is also under threat? [See earlier Blog]

Originally the whole site was much bigger but in the Thatcher period half the then site was sold for housing. Many of the Victorian buildings becoming very desirable period dwellings. The Green spaces between the old ward blocks providing space for sympathetic modern infill buildings.

The value of the land and the building was massive amount to the public exchequer, but no one ever the people what the sum was? As a patient, many years ago I found the green spaces therapeutic and calming for my health. The therapeutic value of green open spaces is now well recognised by groups such as MIND.

The horrible fiasco only highlights how the mental health service are plundered and abused by those in power for their own purposes. Land values in Ealing are extremely high and the community is very short of good sites to serve the local people. If you look on Google Earth you’ll notice the adjoining land is Warren Farm. This was once the farm for the Old Middlesex Asylum. The earlier name for St Bernard’s. This land grab asset stripping process is not new.

Anxiety about NHS reforms is much in evidence in the country. The NHS is an Institution that is seriously valued by British People. Prime Minister David Cameron reassured us, when elected, that the NHS was safe in his hands, our anxieties have been justified

I would advise people in Ealing, Hounslow and Hammersmith to contact their MP, GLA rep, Local Ward Councillor about the issues raised in this blog, and appeal to fellow user survivors to work through their local groups. NSUN [National Survivor User Network]  run the network for London.

Posted by Colin Hambrook, 24 February 2012

Last modified by Colin Hambrook, 28 February 2012

SOS - Save Our Services

On a freezing dark December evening a group of friendly campaigners gathered on the steps of Ealing Town Hall to raise awareness about the threat to close Ealing Hospital also the threat to close the MAC Centre a Mind in Ealing & Hounslow Mental Health Project.

Our group of approximately 40 people, many of whom were service users, spent time talking to the public, gathering signatures on their petition and talking to the local Ealing Gazette.

Having made our platform we went into the main chamber of the town hall to a full Council meeting attended by all the Councillors in the borough.

There were many items on the agenda including the ongoing controversy of wheelie bins versus black bags for refuse collection.

Eventually our issue about the future of Ealing Hospital came for discussion. I expected a hard debate between left and right and all shades in between, but no. The whole council was unanimously opposed to this idea one councillor described the concept as political suicide to support such an issue.

Feeling happy we shuffled onward having felt positive with our nights work. Remembering that other services are not so secure. The Save the MAC Campaign is also striving to protect this valued service. For further details contact...

Posted by Colin Hambrook, 31 December 2011

Last modified by Colin Hambrook, 3 January 2012

I have a dream

‘I have a dream': these were the words uttered by the champion of liberty, Martin Luther King. They were delivered on the 28 August 1963, at the Lincoln Memorial, Washington D.C. He had a vision for human rights in the USA and humanity. Originally he took his lead from Mahatma Ghandi the inspired human rights leader of Indian Independence. These two giants of civil rights have written in the pages of history the road to freedom and we take our lead from them in the Disability Movement.

In recent years I’ve been disillusioned be the many barriers we experience in ‘our movement’ particularly in the mental health sector. Our National Charities seem to lack the courage and conviction to campaign convincingly on our behalf. Perhaps it’s the fact that most of the funding comes from government and they are afraid to take them on. I think the current cuts in public services and cuts in benefit should be good reason to campaign for social justice. I think they should think again.

Barriers, barriers, barriers there are so many that hold us back from personal ones that stop a person getting out of bed in the morning to some of the user vandals that scupper the user involvement process. I would like to encourage people in our movement to work harder, go the extra mile to claim social justice. To claim our Human Rights as laid down by the in the CRPD Convention on the Rights of People with Disability signed in the United Nations in 2007. To acknowledge and claim ‘the Take 5 Charter ‘developed in Ealing, west London this year. To get a new deal for disabilities ~ I have a dream, too for a better world for Disabled people, not like the current nightmare.

Posted by Colin Hambrook, 27 December 2011

Last modified by Colin Hambrook, 28 December 2011

New Vision...

I’m exploring a New Vision in communication. I’m reviewing my situation and re-evaluating the power of the blog. I think blogging is a very powerful disability campaigning tool. I have heard from NSUN [National Survivor User Network] of the large projected growth of Internet access for disabled people and service users in particular.

I‘d like to take full advantage of the growth and expansion and use it as a campaigning tool to inform, promote discussion and work for change especially human rights for our movement, also to explore new initiatives and models of good practice. I think the current cuts and changes in benefit for disabled are a scandal.

In campaigning I’d like to use the full creative capacity and potential of this new media by using photographs, clip art, live action footage, sound clips in fact anything and everything I can muster to interest and inform you, dear readers. I intend to aim for a weekly Friday deadline. I intend to send a link to my national and international email contact list of approx 500 People in over 35 countries. I intend to make full use of Facebook and twitter. It may take time to get up to full speed.

I really want to push it, make this space come alive each week. I really want to connect with you, my readers, using the new medias opportunity to express your
Ideas too. So - Its 1 for the money - 2 for the show - 3 to get ready and lets get going!!!!!

I’m showing ‘Take these broken Wings’ by Daniel Mackler on World Mental Health Day 10th October 2011 at ECIL  1 Bayham Rd West Ealing W13 OTQ at 4-00pm please feel free to come along and check it out

Posted by Colin Hambrook, 12 October 2011

Last modified by Colin Hambrook, 7 December 2011

Poems for Café C

I am poet in residence at Cafe Church - a community that meets for coffee and doughnuts in the lounge at St John’s, West Ealing. Here is a small sample of poems from my poetry pamphlet 'Poems for Cafe C' published by St John’s Church, Mattock Lane, London W13 9LA

Could be me, could be you, could do better
I’m for the guy that is on the run,
the outward traveller, the homeless one,
the one whose life is hard and not much fun.

I’m for the girl who’s a mental health user,
a victim of violence and sex abuser
who left home to become a mother
but at the hospital could not recover.

I’m for the new kid on the block,
the fretting youth with the acne spots.
Life’s learning curve is quite a shock –
avoid the school of hard knocks

I’ll raise a glass to the under-achievers,
the ones who should be self-believers,
whose life is hard but could be better.

The moral of this poem is
love yourself and love your neighbour –
you couldn’t do better?

An Act of Kindness
The bus driver waits
as the late passenger scurries for the bus.

In a nearby street
bouquets of flower are tied to a tree,
remembering a dear friend that has fallen.
A child cries and mother wipes the tears away.

An act of kindness,
someone is thoughtful,
someone cares.

Can one kind act save the world?
Yes…I think it has…
Heavenly kindness.
Amen.

Industrial Therapy Unit
Down in St Bernard’s
in the deep dark depths
there lurks the Industrial Therapy Unit.
You sit alongside people that are
demoralised and deserve better.

Tightening screws, tightening screws, tightening screws
Repetitive and boring
Repetitive and boring
Repetitive and boring

The last bastion of the sanctimonious
institution of Victorian hypocrisy.
Once here how can you look the world
in the face?

Humbuggery, humbuggery, humbuggery –
the last vestiges of the asylum
where people in authority
who should know better
should know better.
Abandon hope all ye who enter here!

by Joe Kelly and Jenny Keown

Posted by Colin Hambrook, 9 October 2011

Last modified by Colin Hambrook, 10 October 2011

Back on the road again!

Dear readers, last week was a week to remember. Had my annual health MOT with Dr Patel looking at my bodywork and my big ends - everything working well so ‘back on the road again ‘. I can almost hear the guitar strumming out the chords.

The week started well with a trip to f.e.e.l friends of east end loonies] at the Larc Centre in Whitechapel. They were showing a Daniel Mackler documentary called ‘Healing Homes’ about service user/survivor recovery and healing in Sweden. Very good movie. Check out his podcast with Will Hall on Madness Radio
I saw ‘Take these broken Wings’ also by Daniel at the Hearing Voices Conference last November at Sherwood Forest, Centre Parc about recovering from Schizophrenia without medication.

After the film there was a good discussion by ‘Speak out against Psychiatry’ lead by John who is planning a protest against the excesses of psychiatry. People with Schizophrenia are looking for something better than the BOG STANDARD pills and poor services. Scientifically DUBIOUS electrocution with ECT. Not forgetting the COERCION. Time to pull the finger out demand quality services

Early start Tuesday, back to the road again to the east end, this time, at New Inn Yard the home of ‘Amnesty International’ with Speakers Jacqui Dillon, Peter Bullimore and visiting from New Zealand, Debra Lampshire were presenting a day on Paranoia and Hearing Voices. Excellent day first class speakers who really knew their subject. The audience was about 50 with a good mixture of stake holders [service user survivors] and mental health workers.

We learnt that there are 5 million CCTV cameras in the UK, that’s 20% of the world’s total, and that psychosis was caused by trauma [and not by chemical imbalances]. Lots of insightful comments from experts by experience who know from experience about psychosis and paranoia. I think the next talk is in Brighton. Check it out on http://www.hearing-voices.org" data-scaytid="2">www.hearing-voices.org

Last Thursday I attended a retirement party for my good friend Dr Pietro Pizzo MD in Ruislip Manor. A truly wonderful guy who has helped many patients overcome their distress. He specialises in Holistic Psychiatry. I met his Early Intervention Team, namely Camilla, Chris and Tonte. Nice people. Dr Pietro was very complimentary saying I should use my knowledge and write a book. I am giving my future a lot of thought exploring about human rights and the terrible cuts by this Coalition government.

Before I hit the road I must tell you about this website I’ve discovered called www.ted.com" data-scaytid="4">www.ted.com and in particular a talk by Sir Ken Robinson called 'Schools kill creativity'

I think it speaks for itself. Bye for now HAVE A GOOD ONE. ~ Regards Joe

Posted by Colin Hambrook, 6 July 2011

Last modified by Colin Hambrook, 6 July 2011

Joe Kelly attends Mental Health Research Network National Scientific Meeting

Image - Joe_Kelly_Cambridge.jpg

I must be meeting the right people because the North London Hub of The Mental Health Research Network invited me to attend this important conference at Cambridge University from 6th-8th April 2011 concentrating on Developmental and Youth Research. Cambridge is the home of Antarctic explorers, a famous spy ring, the splitting of the atom and the Monty Python Team, to mention but a few of its achievements.

It was good to meet service users/survivors and carers from the various MHRN research hubs of England. The Mental Health Research Network is made up of 8 regional hubs, Cambridge being part of the East Anglia Hub.

There were about 20 of us in all. We spent an afternoon at the west road concert centre, polishing our communication skills as David Armes and Jackie Barret gave us a good presentation on this very subject. Later we spent time doing an exercise exploring how the selection process for research work operates. We enacted the process of selection and had the choice of two competing research trials, giving us some idea of how experimental research might work at the committee stage.

The official opening lecture was in the main concert hall with psychiatrist Professor Peter B Jones, a good speaker who reminded me of Ken Clarke MP. Professor Jones gave us an overview of how the research was now developed and being implemented at local level. We were told how Gordon Brown took a keen interest in the development of Mental Health services, particularly experimental research to delivery. He appointed special advisers to improve the process of developing new ideas and their implementation.

Professor Jones outlined that from start to finish the process probably took six years in all. The example he gave was Early Intervention in Psychosis, which he felt was a big improvement and had done a lot of good. He also explained how groups of official bodies such as universities, hospitals, charities and private companies work in collaborative groups to develop good outcomes from inception to delivery.

Cambridge, the backdrop of our conference, is an attractive university city looking especially striking in the spring sunshine as we travelled through elegant streets with period houses, punctuated by grand gothic colleges. Tall trees freshly sprouted new leaves and bright yellow daffodils greeted the sun in the very pleasant parkland. Our accommodation was at Jesus College originally founded in the 11th century as a convent.

We were weary at the end of the day and passed attractive resident blocks with red brick façade faced with blue wisteria flowers smelling sweetly. The grass area had cherry blossom trees, with wrought iron sculptures. Sleeping soundly I awoke to a wonderful view of bright green playing fields. There was a sculpture of a mad march hare figure balancing on a tripod assemblage of cricket wickets. It sounds crazy but it seemed like a good luck emblem to begin the day.

At breakfast I met Triona, a music therapist from Limerick University in Ireland and Diana, a user Director of research from Lincoln, working closely with a leading psychiatrist, Dr Sami Tamini, who is part of the Critical Psychiatric Network. Truly we inhabited another world of privilege and power - a different concept to our normal lives where we fit into the social fabric.

The main day was at the faculty of Law - a state of the art modern building with excellent facilities including a large spacious atrium. The opening was from Dr Jesus Perez (the University of Cambridge East Anglia Hub). The plenary session was with Dr Gavin Malloch, who also talked about strategic ideas and covered addiction in young people

The theme for the meetings was Youth Mental Health. Topics such as autism, alcoholism, personality problems and early intervention were covered. As a user and layperson there were few concessions to non-scientists like myself. Some of the presentations contained difficult factual knowledge. I thought some of the presentations could be improved by better graphics in the slide diagrams and that the verbal delivery could have emphasised important themes.

Although the MHRC is committed to including the vision of users and carers, there were no presentations from users or carers as contributors to this process. One user said that there were research projects with users but that they were not at this meeting. It was a missed opportunity not to demonstrate the power of users.

Some of the presentations included brain imaging which was very interesting. A new aspect of science, which is of increasing interest and importance, is the interpretation of the images in question. There is also quite a lot of information about genetics and genes. I was beginning to feel that psychiatry is more a force for demonising a sector of society, concentrating on disease and forgetting the person, whilst not appreciating his/her rich diversity as a human being. There was little evidence of England’s multiculturism in the psychiatric arena. I‘d like to see more black psychiatrists and more reference to culture and ethnicity in the presentations.

In the evening, we had wine at Kings College court green and a banquet in the prestigious Banqueting hall. I was beginning to feel that Cambridge was the star of our work but that it blurred us to our purpose of getting a better understanding of mental distress and helping people. The elegance and the opulence of our surroundings were more a statement about the power and prestige of psychiatry. I’ve always subscribed to the idea of psychiatrists as partners in care and treatment but not as our masters.

I noted that sometimes they admitted that they got it wrong and that they did not always understand why things worked and didn’t work. There was no mention of coercion of human rights and insight into the patients’ experience. I would have been happier if there was a more humane coverage of mental distress.

I was treated very well and with respect and it was a chance to look into the world of experimental psychiatry. I was not a hundred per cent sure what our role in this process was to be. There were stories in conversation about individual users doing useful research work. I’m still interested to hear more about this.

Time being of the essence, I was soon on my way home. So having had a very good few days, I was on the train back to London, continuing my campaign to get a better deal and human rights for service users and survivors of psychiatry.

Posted by Colin Hambrook, 28 April 2011

Last modified by Colin Hambrook, 3 May 2011

Joe Kelly comments on service provision at 'resource centres'

I believe that Service Users/Survivors can help each other to recover. This self-help thinking is not evident at day centres, and could do a lot to help people lead more meaningful lives. Professionals feel threatened when mental health service users want to be providers and run things. They are often averse to this way of thinking. I feel that day services should be geared up in getting people back to work not long-term disability. This process should begin at the day centre

My local Community Mental Health Resource Centre CHMRC is what the NHS provides for service-users in my locality. I described the entry system some time ago in a blog showing how the entry phone system was intimidating and hostile to service users. Although they are called Resource Centres The resources are very slender and not geared towards the self-help model. They are more like hospital in the community. They do not put up photographs of who works there like the doctor’s surgery does so you are not sure who the staffs are. There is no mission statement on display saying what heir aims and objectives are. There is no progress report on new initiatives,

In the main common room information on notice boards are six months out of date. There have been requests for computers and Internet access. There have been promises for this but they have been an exceedingly long-time coming. Access to information is a human right as defined in the CRPD Convention on the Rights of Persons with Disabilities.

Their model of care is the medical model,’ Doctor knows best,’ with psychiatrist’s upstairs pushing pills and well-meaning social workers organising activities downstairs. No chance of user-power here. This day centre is located on the edge of a housing estate, but it is not a part of that community.

The centre is open from 10am-4pm Monday to Friday but it could be used at evenings and weekends for service user initiatives, but that is not possible because of very structured protocol of the WLMHT West London Mental Health Trust. I think there is great potential for reform of this Institution and others like it. I believe that Service Users/Survivors can help each other to recover, given half a chance.

Posted by Colin Hambrook, 22 February 2011

Last modified by Colin Hambrook, 29 April 2011

Joe Kelly is looking for feedback about approaches to changing medication

Currently I am in a transitional stage of development. With the help of my advocate I have changed from depot injections to oral medication. I am finding this very challenging.

In this I have been influenced by Dr. Joanna Moncrieff, author of The Myth of the Chemical Cure, and Dr Richard Bentall, author of Madness Explained.

Also, I have started to write a book with the help of art therapist Andrea Heath. I am working on a new project, "USA, a manifesto, a user-survivor agenda", which I hope to release soon.

I should appreciate the input of others who have experimented with their medication.

Posted by Anonymous, 6 September 2010

Last modified by Colin Hambrook, 7 September 2010

Joe Kelly visits Birmingham to attend an important seminar

Recently I travelled from my home in Greenford to Whitechapel and was picked up at the Brady Centre by a minibus that took a group of us to Birmingham. The group was a keen bunch of user survivors from three main groups. These were the Survivor History Group, THACMHO [Tower Hamlet Afro Caribbean mental health organisation] and lastly f.e.e.l. Friends of East End Loonies.

We travelled to the University of Birmingham, Centre for Excellence In Interdisciplinary Mental Health, Edgbaston - a large red brick Victorian building. CEIMH has developed dynamic and collaborative partnerships across the University with Education, Health sciences, Medicine, Psychology, and Social Sciences, and with key local, national and international mental health agencies and service user and carer organisations www.ceimh.bham.ac.uk

The reason for our trip was a collaborative seminar. The first speaker was Philip Morgan of THACMHO. He spoke about the plight of Afro-Caribbeans in Britain from slavery to the present day, reminding us that some of the practices of the dark days of slavery are still in evidence today. His talk was stimulating, thought provoking and challenging.

He was followed by Andrew Roberts, Leader of Survivor History Group, who spoke authoratively about the history of user/ survivors in the 1950’s and 1960’s when the term ‘Mental patient ‘was a challenging statement. He drew our attention to important groups that have been pioneers in our movement: Survivors Speak Out and Mad Pride.

One perceptive person commented that the internet and easy flow of information was making a big difference to user survivors and the progress of our movement. Our last speaker was Dr Mark Cresswell (University of Durham), who spoke about self-harm, referring to "Self-Harm: Perspectives From Personal Experience" edited by Louise Roxanne Pembroke, 1994

There were some discussion between self-harm advocates and important people In the Ministry of Health. The gulf of understanding was too great and the people at the top abandoned it. One person said we needed more research in this area. The whole day s a good example of collaboration between the academic world and user survivors and only good can come of this.

The audience was a mixture of academics and user survivors. The university and staff were hospitable and friendly and we enjoyed a delicious buffet lunch Before leaving we were told there was a conference on self-harm and borderline personality disorder at the ORT Conference Centre, London on 4 October 2010. On our way home we were joined by Nat Fonescu (an independent alternative therapist) and Andrew Roberts (of Survivors History Group).

Please find details of an important event organised by f.e.e.l which I hope to cover?

Humane Therapy not Drug Tyranny
Speaker: Joanna Moncrieff - author of 'The myth of the Chemical Cure' is an academic and practising psychiatrist. She is a long-standing critic of psychiatric drug treatment and has published numerous articles in medical journals. She was a founding member and is the co-chair of the Critical Psychiatry Network. There will be an interval with music and refreshments.
Date: Friday July 30th 2010
Time: 6-30 doors open for 7pm start 
Venue: Kingsley Hall, corner Powis and Bruce roads E3 3JH [Nearest tube station Bromley-By-Bow] 

No entrance fee but there will be a collection to cover costs. FEEL- Friends of East End Loonies is a campaign group for more humane and less oppressive psychiatric regimes. It meets the 3rd Monday of the month at 6,30pm at the LARC Centre 62 Fieldgate St W1 1ES 
For more information call David: 020 7790 0269 or Myra: 020 7159 3805
Email: f.e.e.l.campaign@googlemail.com

Posted by Colin Hambrook, 26 July 2010

Last modified by Colin Hambrook, 26 July 2010

Joe Kelly is keen to connect. He blogs some favourite online places for mental health issues

When I stood down as Director of Footsteps Arts I made a particular point of getting broadband at home. I realised the power of the internet and it's many advantages. I wanted to develop my research and development capacity and search for new and innovative ideas in the mental health sector.

I realised that communication and isolation was an important issue for service user/ survivors, both individually and collectively. The internet continues to offers new opportunities and new links between people and the chance for real and meaningful change.

For example the WNUSP (World Network of Users and Survivors of Psychiatry) Conference last year in Kampala wouldn't have happened without the ease of the email. Similarly the CRPD (Convention on the Rights of People with Disabilities) was made possible with the ease of communication the internet offers.

In my locality Ealing, West London there is a move to get our local CMHRC (Community Mental Health Resource Centre) online, at last. The internet offers the chance to move the many debates in mental health forward. I think it's good for mental health politics.

I think there is an opportunity to serious challenge to the medical model with it's over reliance to medication, ect and the theory of chemical imbalance. Many people want the social model of mental health care with more access to the talking treatments, creativity such as the arts, 'hearing voices groups' etc and some modest use of medication.

Some important websites I can recommend are Madness Radio from Portand Oregan USA presented by Will Hall who does a superb job interviewing the latest thinkers in Mental Health.

Also noteworthy is Gail Hornstein, Psychologist Professor at Holyoke University USA Especially her work to do with peoples personal stories in mental health.

National Survivor User Network NSUN's regular bulletin is excellent. The bulletin keeps people up to date with developments on user choices and user voices.

I also get the newsletter from the National Mental Health Development Unit. Their recent report on Peer Lead Groups in New Zealand Hospitals giving service users/ survivors purchase on their care provision, was extremely interesting.

I think Cooltan Arts and their Largactyl shuffle is a very good idea. I also hear the Survivors History Group are useing a Googlelink to gather ideas about the cuts and threat to people dss benefit and the need to work more effectively

Recently on BBC iplayer I saw a very interesting program about Clown Doctors. Shades of Robin William's Film ' Patch Adams' emphasising the curing power of laughter.

This brief list is a testimony to the power of the internet. I hope you can spare the time to look at these sites. I would also be interested in hearing some of your favourites?

Posted by Colin Hambrook, 10 July 2010

Last modified by Colin Hambrook, 10 July 2010

Joe Kelly comments on causes of low self esteem in mental health treatment

When I visit my local Mental Health Resource Centre I'm greeted by running the gauntlet of an entry system that was designed for processing, what would appear to be very difficult people. Firstly you ring a bell next to a door with a glass frame. A buzzer rings and you go into an enclosed space with a glass screen looking into an office. In the corner is a CCTV camera monitoring you from above.

Next you have to sign in saying who you are visiting and the reason for visiting. You then press a button. If you do it properly the door opens. If not you have to try again. Hopefully you get it right first time.

Just to the right is another glass screen behind which sits a receptionist. She is usually busy, but eventually she stops, pull the glass screen asks you what you want and tells you to wait in the waiting room until you are called.

It’s a little different to my experience of an entry system at the Footsteps Arts old office base at the Lido Centre in West Ealing. The door would usually be open. I'd walk into reception and be greeted by a receptionist, pick up my mail and go through a security door to my office desk.

Such a difference; more empowering; more human, more what you want, more respectful. How you are processed by health professionals and their systems tells us a lot about who we are and where we are on the linear continuum that measures respect.

I know a lot of user-survivors call mental hospital 'the bin'. Perhaps it's like the day centre entry system ... makes you feel not respected and consequently bad about yourself. Low self esteem is very common among user-survivors and can be transmitted by little things like the entry system telling us we are not worthy. Feeling not worthy promotes depression. Depression is a serious problem affecting the lives of users-survivors.

I've noticed there are many poorly designed practises and systems in day centre and hospital environments but health professionals seldom check them out. Health professionals are too complacent to notice when I go to my local Mental Health Trust HQ or my local PCT [Primary Care Trust]

Their receptions are not like my day centre. Day centre entry systems don't seem that important - but when you look a little closer it tells you who is in charge and what values they have - and how important the issue of low self esteem is on their care radar?

I hope commissioners and mental health chiefs read this blog?

Posted by Colin Hambrook, 15 June 2010

Last modified by Colin Hambrook, 15 June 2010

Joe Kelly charts the progress of the Convention on the Rights of Persons with Disabilities

In March 2009 I attended the World Network of Service Users and Survivors of Psychiatry [WNUSP] Conference in Uganda, Africa. The main business of the conference was the CRPD, Convention on the Rights of Persons with Disabilities. This Convention was originally signed in the United Nations, New York in 2007.

Since then I have been tracing its progress through our own system. It has been ratified by our government and recently I attended a conference by the Office for Disability Issues [ODI] at the Queen Elizabeth Conference Centre in Westminster. The Convention is quite a bulky document - about 47 pages in length and it covers a total of 18 articles.

The articles which effect User / Survivors are:
Article 12: Equal Recognition before the Law  - recognises our legal capacity to give us full human rights. 
Article 14: Liberty and Security of the person - protects our liberty from being forcibly detained. 
Article 15: Freedom from torture, or inhuman or degrading treatment - safeguards us from torture including forcible medication. 
Article 19, (not shown here) asserts our right to live independently in the community.

I have highlighted the most essential aspects of the articles below. I would very much appreciate your response to this important document and the rights detailed in this document.

Article 12: Equal recognition before the law

  1. States parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.

  2. States parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.

  3. States parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

  4. States parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards are proportional to the degree to which such measures affect the person’s rights and interests.

  5. Subject to the provisions of this article, states parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.

  6. States Parties shall ensure that persons with disabilities, on an equal basis with others: (a) Enjoy the right to liberty and security of person; (b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.

  7. States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of this Convention, including by provision of reasonable accommodation.

Article 15: Freedom from torture or cruel, inhuman or degrading treatment or punishment

  1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.

  2. States parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.

The authorities are obliged to promote knowledge of this convention.

Posted by Colin Hambrook, 12 April 2010

Last modified by Anonymous, 12 April 2010

Joe Kelly reviews the Survivors History Pageant at Kingsley Hall

Last weeks Survivors History Pageant at Kingsley Hall in Bromley-By-Bow was a great success. Run by Survivors History Group and F.E.E.L (Freedom for East End Loonies), about seventy people were there. Andrew Roberts was in command as the IT projector unrolled the history of User Survivors in Britain.

Nathalie Fonnescu made a photo/live action record of the evening that can be seen in parts on Youtube. You can find related links by clicking on the video of Frank Bangay's performance of 'A Proud Rhythmn.'

A host of narrators took the stage to tell the story that is the history of our movement. Difficult with the benefit of hindsight to understand the resistance of officialdom, or perhaps not. That’s why so many of us are cynical and why so many call ourselves survivors. The story made interesting listening.

Then pausing for a break we enjoyed a tasty buffet. The food was delicious and shamefully I had two portions of blackcurrant gateaux. The second round was an open mike affair with contributions from the floor.

Frank Bangay gave a sample from his new book Naked Songs and Rhythms of Hope. Peter Campbell gave a rousing monologue. Razz was in good form also with a powerful piece. The mood was militant and uplifting.

There was room for comments and someone spoke about a local daycentre being cut. Mary Nettle spoke powerfully that User Survivors and Institutions did not go well together and that we would be better to run our own day services.

Also worth mentioning is my local user involvement project meeting with official from the local PCT and Trust about CUTS. It's depressing stuff as our local trust goes through a downsizing process. This is the first time I've been in a meeting at close quarters with mental health professionals.

They outlined how much needed to be reduced but they couldn't say where the cuts would be made. Not the most successful meeting I've attended. I think there is a greater need for user/survivors to work more closely for the good of all. This issue goes on...

Loud and Clear are advocates for mental health who are campaigning to stop coercion. They are looking for users and survivors who have direct experience of coertion to be interviewed for their Film. If you would like to participate please phone Sian Phillips on 020 8900 2221 for further details.

This Thursday was the party for our church St John Alpha Group. We had a meal cooked by Nadine and her team. It was truly delicious as we were able to focus on the last ten weeks of the course.

People were invited to talk about their experiences. I spoke about Mind, Body & Spirit, God the Father Son and Holy Spirit; and how I wished to dedicate my life to promoting the human rights of user/survivors. I pray God blesses my work?

This Tuesday there is a conference by the Office of Disability Issues on human rights and the new Convention. It was this time last year I heard in Africa about the Convention on the Rights of People with Disabilities. Tuesday should be a very interesting day.

Posted by Colin Hambrook, 29 March 2010

Last modified by Anonymous, 29 March 2010

Joe Kelly blogs some reflections on the Survivor Movement

The Unstoppable Movement

''What we did was to start a movement that can’t be stopped. All it can do is grow.' Hans Weigant, 1985 Dutch Patients Council Foundation.

This rather wonderful quote, now part of survivor history, spurs me on to say that I am part of a movement - a movement that I am very proud to be a member of.

Sometimes the movement is extraordinary, as when I visited Uganda in Africa and met the wonderful delegates from over 35 countries discussing the important issues on user-dom.

Sometimes the movement is disappointing – as when I realised a good friend who is himself a user, and is also middle-aged - had never heard of the mental health service user/survivor movement.

I guess impairment will always get in the way. Our movement could be much improved in the UK if we had a national organisation and a national spokesperson. The apex on the pyramid of power has yet to emerge. There is a flourishing grass roots; a well-developed middle tier; but no apex or leading organisation.

I would urge activists in the middle tier to address this imperative. I realise hierarchies are not popular with service users but I don’t see an alternative. We need a main group with a leader who can be a spokesperson, an ambassador, a lobbyist, a networker and a co-ordinator. Lots of opportunities are being lost because of this deficit. We need to be effective nationally, regionally and locally.

On Monday 9 March 2010 I attended the 'Funding Social Care: Getting It Right For The Next Generation' conference at the Institution of Civil Engineers in Westminster. It was hosted by the Sir William Beveridge Foundation in association with the Centre for Citizen Participation and the Joseph Rowntree Foundation.

The main speaker was Peter Beresford OBE, a service user speaking very eloquently about social care for the elderly, especially the encroaching baby-boomer generation and the need for suitable funding to be available from taxation to meet their needs.

Discussion was led by a panel made up of Prof Alan Lee Williams; Julie Unwin CBE; Stephen Burke Counsel and Care; Julie Charles, Equalities National Council; Martin Green, English Community Care Association; Norman Lamb MP and Alan Wheatley, Green Party.

More than 50 people from associated community organisations were present. There was some good discussion followed by questions from the floor.

Also worth mentioning is the forthcoming event, 'A Pageant of Survivor History: Mental Patients in Poetry, Story and Song’ on Friday 19 March at Kingsley Hall, Powis Road E3 3HU (nearest tube Bromley-By-Bow]. For more details contact f.e.e.l.campaign@googlemail.com

It should be a very good night. There are some very good performer/poets on the bill including Peter Campbell and Frank Bangay. I shall be there.

'What we did was to start a movement that can’t be stopped...' If you want to an interesting compilation of the history of the Survivor Movement go to Andrew Roberts homepage

Posted by Colin Hambrook, 15 March 2010

Last modified by Anonymous, 18 March 2010

Joe Kelly is working towards a better deal for mental health users and survivors

I hope 2010 is a very productive and positive year. 2009 was very mixed. I had some interesting experiences but the year was tinged with difficulties. I am reminded that I am continuing on a pathway that started many years ago.

In 1998 I co-founded Footsteps Art Group, which later became Footsteps Arts. From small beginnings my colleagues and I were able to create a lively art group, with visual arts, music and creative writing, not to forget filmmaking and photography. We were lucky to create a vibrant group.

By 2008 I was feeling worn out and disillusioned that the local commissioners did not see user providers like ourselves as making a large contribution to the work of mental health recovery. In July 2008 I stood down as director/coordinator of Footsteps Arts, maintaining a seat on the board of trustees of our treasured charity.

In October 2008 my dear mother had a stroke so there was lots of activity in the family to deal with this unfortunate occurrence.

In February 2009 my good friend Peter Munn invited me to go the WNUSP World Network of Users and Survivors of Psychiatry conference in Kampala, Uganda. In just under a month I was able to raise approximately £1100 for travel and expenses appealing to the 500 contacts I had made over 10 years. I was also helped with a generous contribution from Disability Arts Online.

The conference was a great success, meeting some fine people from 35 countries around the planet. The main topics were CRPD (Convention on the Rights of People with Disabilities), mental health feminism, the positive side of madness, and many more. It was exciting stuff.

A little later I went to the Critical Psychiatry conference in Norwich run by Dr Joanna Moncrieff. At this conference the medical model of psychiatry was being seriously challenged by dissenting members of the psychiatric profession. A psychologist called www.gailhornstein.com">Gail Hornstein made a big impact with a book called 'Agnes’ Jacket'.

In September I attended the mental health trainers’ conference run by Thurston Basset, also working closely with Peter Munn. This was a lively conference outlining service users as trainers - something you do not hear much about at your local CMHRC .

In November 2009 I attended the R.D.Laing conference at Cavendish Square, Central London, another conference where many psychiatrists were sceptical about the medical model, even highlighting the dangers of antidepressant medication during pregnancy leading to birth defects.

Finally I attended one day of the Mind Annual Conference at Brighton race course in the suburbs of Brighton. I learnt quite a bit at this conference on service users as commissioners, and also financial capability to help people managing on DSS Benefit.

Writing blogs and attending mental health conferences has given me a taste for campaigning. I've been encouraged by my friend Ramon Costa to form the 'Hope Network.' Hope, because that’s what we need the most, and Network, because if we are to get our views across we need to bring together like-minded people and lobby them whenever a blog is posted.

I am also hoping to write a book and even producing a DVD if I can get a publisher interested. In doing this I would like to raise a platform for myself as a speaker to give talks and presentations about the difficulties of the mental health system and by asking important questions and outlining how life could be better for mental health service users and society as a whole.

In order to do this I need to develop an online work force. Tim Evans has helped considerably with photography and design work. Charles Jobson has helped with typing and mentoring. I would also like to get other volunteers to help with creating an online database. I look forward to developing these ideas further.

I would also be interested in comments and criticisms, particularly from dao readers, in fact, the more the merrier.

Posted by Colin Hambrook, 19 January 2010

Last modified by Anonymous, 20 January 2010

Joe Kelly reflects on mental health issues and the Hearing Voices Network

I have a confession. Apart from having a so called mental health problem, I have yet another affliction. That is I suffer from difficulties with writing. The problem is not genetic or environmental, not infectious or of some strange origin or ague.

It’s merely this - I am so impassioned with my cause and so keen to say my piece, I seem to get overcome with a kind of word blockage and a compaction of thought that prevents me approaching the computer keyboard.

Now in the late hours of the day when it’s quiet and still, I’d like to write and tell you about something special, something good. Something that could help a lot of people who hear voices and experience unusual phenomena, including difficulty with obsessive thoughts.

Through my enquiries, I’ve heard about and had some contact with the Hearing Voices Movement. Recently I attended a Hearing Voices Course run by Mind in Camden in North London.

The course was held on four separate training days and was lead by a very good teacher called Rachel Waddingham. There were 12 learners on the course. Half were service users and half were mental health staff.

The Hearing Voices Movement is made up of an international network of groups. Each group is a peer group so is run by its members. Most are user-run but some are organised by mental health workers.

Originally the Movement was set up by Professor Marius Romme and his colleague Dr Sandra Escher of Maastricht University in the Netherlands after a patient confronted him and asked him to take his voice hearing more seriously.

This he did and Romme found out that about 10 per cent of the population hear voices but strangely only one per cent is diagnosed with Schizophrenia.

This started off a new therapeutic pathway of learning and thinking about hearing voices. A pathway which has grown and developed. A pathway which allows people to understand and come to terms with their voices and experiences.

This also concurs with Dr Rufus May who appeared in a film called The Doctor Who Hears Voices. This is a re-enacted Channel Four documentary, originally shown in 2008, about a psychologist who helped his patient - the doctor of the title - back to health and to live with her voices and avoid anti-psychotic drugs.

So much of conventional psychiatry involves heavy-handed interventionist treatment using drugs and ECT (electro convulsive treatment) often affecting function and dumbing down the thinking processes of the patient.

The drugs prescribed can have long-term effects such as Diabetes and Tardive Dyskinesia (an irreversible neurological condition which results in a person not being able to be in control of their movements). Meanwhile, less and less time is spent talking to the patient.

I think the advent of Hearing Voices groups offers an important new tool in the understanding of mental distress. This is a quantum leap from conventional treatment of diagnosis and drug therapy with difficult side effects.

Returning to where I began where I told you about my writing problem, I feel it is improving. It is better when addressed than neglected. And better still when I take my courage in my hands and face the computer keyboard.

Writing can be very therapeutic helping one to engage with life’s challenges. When I write that I have a 'so-called mental health problem', I’m reminded that Hearing Voices allows the rewriting of the rules of mental health. Hallelujah.

Posted by Colin Hambrook, 6 December 2009

Last modified by Anonymous, 10 December 2009

Joe Kelly sends in a report on the Politics of Evidence conference

Joe Kelly is a writer and campaigner around mental health issues. Organised by the Philadelphia Society, 'The Politics of Evidence' conference took place on 10 October 2009 at King’s Fund Centre, Cavendish Square, London.

I recently attended the R.D.Laing Conference at the  Kings Fund Centre. It was a good conference, bringing together approximately 100 delegates from a mixture of backgrounds, but principally from the liberal wing of psychiatry. It was a 10am start after coffee and check-in. The first speaker was Dr David Healey. He gave a good talk about anti-depressants, principally Seroxat for treating depression in pregnancy.

It has become regular practice for doctors and psychiatrists to prescribe this particular drug. Dr Healey spoke of birth defects and other negative side effects. A learning curve to partners and wives to avoid these types of drugs at all costs. You do not often get such a powerful lesson at conferences. The atmosphere was informal and Dr Joanna Moncrieff leader of the critical psychiatry network took the podium.

In her audio-visual slide show she showed a history of psychiatry, and showed political desire to develop a systemising model of psychiatry, similar to the medical model. This emphasised the influence of the drug companies in the development of services. I think her talk gave a good picture of neo-liberal development and market capitalism.

The next two speakers, Dr John Heaton and Dr Lucy King, spoke about evidence as in evidence-based psychiatry. Through a circuitous route of logic they proved that evidence-based psychiatry was difficult to achieve. There were questions from the floor. One was about wellbeing and wholeness. Questions and answers do not always mirror each other- but it was good to speak out and there was much food for thought.

During lunch I talked to my to my former psychiatrist, Dr Pietro Pizzo. He believed in holistic treatment, which helped me a lot. I was glad to see him again. I also met Fiamma, a charming Italian lady who is a career advisor doing a PhD.

Back again at the lecture theatre the next speaker was Dr Pat Bracken from Cork in Ireland. I know Pat from my contact with John McCarthy of Mad Pride Ireland fame. Pat was a very good speaker emphasising the placebo effect over the drug effect.

Basically he believed more in the cultural and social aspects of a person’s life; they'd be more likely to heal their mental health problems more than medicine. The placebo effect was his expression for the meaningful things in a person’s life that make them feel good. It does not seem like rocket science but its good to hear these things.

The next speaker was Dr Miles Clapham who talked about 'R' - a lady who had experienced abuse and violence and was violent in return. It was a long story, which was quite detailed. The doctor was positive and exemplified a healing and caring attitude and was not afraid to show some of his faults, which I found quite refreshing. He was not a smart Alec who had all the answers, rare in psychiatry.

The R D Laing conference was well presented and stimulating. Two of the speakers Dr Joanna Montcrief and Dr Pat Bracken also spoke at the Critical Psychiatry conference at Norwich a few months earlier.

There is obviously a desire to change the profession move it away from traditional thinking and it’s addiction to pharmaceuticals but we are not there yet. Doctors are not traditionally radical so real change does not happen easily.

Posted by Colin Hambrook, 7 November 2009

Last modified by Colin Hambrook, 17 November 2009

Reflections on return from Kampala

The time has come, the Walrus said, to talk of many things. Of shoes and shipping and sealing wax - of cabbages and kings and why the sea is boiling hot and whether pigs have wings - Lewis Carroll

I arrived back from Africa on Sunday morning at 6am. Heathrow Terminal 4. Took a bus to Southall and then home. I had no electricity, no gas, and I had to wait for four hours while the gas man put a new battery in my Quantum meter.

It's a bit of a come down from my adventures in Africa. At present my mother who has had a stroke and suffers from dementia is in a care home, and we were trying very hard to negotiate with the council and the PCT for her care provision.

People do not seem to realise that care for the elderly is not a right like other health care. Very often families have to sell their property for their loved ones'care. This process is a steep learning curve and rather harrowing to the nerves. I feel this could be a dress rehearsal for my own care, which is yet to happen.

When I get a quiet moment I like to reflect about my African adventure. What can I bring back from Africa?

  • A more philosophical approach to mental distress, especially a belief in spirituality
  • A questioning of the validity of mental health medication and ECT
  • The fact that WNUSP is the apex of a world network of users/survivors
  • The realisation that some very important new human rights have been defined and need to be implemented
  • The need to alert people in the UK about these new human rights
  • I feel I have made some important new friends in the global world of user/survivors
  • I have gained confidence and new energy
  • It has given me a stronger desire to part of the user/survivor movement and play some part in the building of that movement
  • Perhaps part of that role could be as an Interpreter of ideas and events
  • There are some others I am still working on

During my stay in Africa I had a chance to recite some of my poetry. Here is one called Breaking on the Ground:

Breaking on the ground
Out on the Common
Common as dirt
A fellow is howling
Howling in the dirt
He howls to release
The anger and the pain
The numb cry echoes
He screams to release pain
The wounded beast
Breaking on the ground
With the slings of adversity
He howls out aloud

Chorus
Long walk to freedom
From pain and insanity
Come back tomorrow
Tomorrow humanity

Pjk 06/08

I took the liberty of taking the title of Nelson Mandela's book as part of my poem. I hope this illustrates a point about my return.

Posted by Anonymous, 8 April 2009

Last modified by Colin Hambrook, 9 November 2009