There will be elections to the NSUE (HSE South area)  in May 2009.

Right now there’s a big need to spread the word to "users" of the mental health services.  Otherwise what’ll happen is that there will be elections to NSUE and people won’t know they had a vote and didn’t use it.  There will be people in position meant to represent "users" and their mandate will be weak.

There is an equally big need to get "carers" involved in NSUE.  There isn’t a national organisation representing carers.  I mean anotheorganisation that’ll be invited to sit down with the minister and say what they want.  Users need carers.  I’d be lost without my Wiffe.  She’s been my greatest support.  She’s more important to me than any psychiatrist or GP.  She has a voice.  It’s worth hearing. I bet most "users" would say the same about their best friend.

Which brings me to news from the NSUE…

NSUE MEMBERS MEETING

The DCU symposium on mental health on 29 January 2009  was awesome.

No point in mincing words, it was fucking fantastic, and quite inspiring.  A collection of people in a room dedicated to finding a new way of having conversations about mental health and the good life.

We were addressed by a psychiatrist, an Austrian psychiatrist.  She said that there was a new way of talking and listening for people who made their living from mental "illness".  A new form of conversation for people with mental health issues - "users" or "consumers" of the mental health service… A radically different form of discourse for those neglected people known by some as "carers"…

In other words, "Trialogue" - 3 different interest groups sitting round talking to each other without the interference of hierarchy, without the obstruction of labels, the negativity of stigma… A collectivity that kept on talking every two weeks, and gradually built a sense of partnership by listening to each other and appreciating what everyone could bring to the party.

She described how people had met in a "neutral" place - a space without anyone being in charge.  A sort of free-talking forum where people experimented with ideas and roles.    A "carer" didn’t have to present themselves as a "carer".  A psychiatrist didn’t have to announce that they were a psychiatrist before speaking their truth.  Such was the forum that there was extraordinary speaking and absolutely remarkable listening.  People simply were themselves and enjoyed being with others.

She, the psychiatrist, was like a pioneer, an evangelist, and she didn’t just do the theory - she gave us an opportunity to suck it and see.  The participants at the DCU symposium had a go at doing a Trialogue, and I got the flight back to Cork wanting to establish a trialogue in Cork.

This is probably very abstract stuff for people who weren’t there, who didn’t have the experience of being introduced to a type of conversation designed to promote "recovery" from mental "illness".

The day had a bit influence on me. 

I decided it would take ages to get rid of feelings of stigma about mental "illness".  Years and years of incremental change… Instead I decided I’d take a stand and nail my colours to the mast:

In future, the only people whose company I’d enjoy would be

(1) people who have personal experience of mental "illness"

(2) people who feel themselves to be vulnerable to having mental "illness" some time in the future

(3) people who have already been a good friend and supporter to a person with mental "illness"

(4) people who imagine they might some day be called on to be a good friend & supporter to someone with mental "illness".

All the rest can go talk to themselves.  I’m not interested in them - except as subjects of an anthropological nature.

Ther DCU symposium was a forum of about 45 people, 60% women.  Many with northern accents.  It explored a new method of talking together for the sake of mutual benefit: service users, service providers and carers working together for a common purpose, all respecting each other, all attending to each other, all being willing to challenge each other.

There was one man there who flew the flag for this being part of a wider picture.  He said that improving the mental health situation was part of a bigger whole.  He was driven by a commitment to societal change.  I think in a similar way.  I come into this because I have a vested interest in better mental health services in Ireland.  Because I suffer from dreadful depression, I need the services of a GP, a psychiatrist, a psychiatric nurse, a chemist, an occupational therapist, a self-help group, and family & friends…

A selfish bastard who’s out to improve things.  That’s me.  It was brilliant to be among allies.

If I don’t sum up the NSUE Conference now, I may get confused…

I’m going to DCU tomorrow, to another mental health event. There’s bound to be some overlap.  I know one other person I’m hoping to meet there who was also at the Cork NSUE conference.  Hopefully, there will be other faces I recognise.  I’m flying up and down on RyanAir. (Wish me luck.)

Key points from the inaugural NSUE Conference @ Cork

(1) It was designed so that the first 75 minutes were totally dominated by service policy makers, planners, and managers  (Chairman, minister, director). The first voice I heard of a service user was that of John Redican, national executive officer NSUE.  The first carer heard was Jenny Kelly, chair of NSUE. They had a joint slot (which was wonderfully done) of 15 minutes.  Then we all went to coffee for 30 minutes.

I hope the design of the next 3 conferences (which are scheduled for HSE areas West, North & East) will be changed to reverse the order of voices: so that there will be 75 minutes of service users & carers, followed by 15 minutes from service policy makers, planners and managers. This would make a huge positive and symbolic difference to everything.  The service deliverers would have an opportunity to demonstrate listening in public - to service users & carers.

(2) Tony Leahy, HSE, chairman of the conference, did a great job.  He had to think on his feet, attend to the pulse of the audience, and allow extra time for service users’ & carers’ voices to be heard. Otherwise, there might have been rebellion by the audience, many of whom may not have been fully listened to ever in their mental health lives, I thought.  Judging by the energy in the room (and the number of people who put up their hands to speak), the conference could easily have gone into a second day.

It will be well worth ensuring that policy makers and managers are seen to stay right to the bitter end, thereby walking the talk, at future conferences. (One speaker drew attention to how unfortunate it was that everyone didn’t stay to the end.

 (3) The presentations - by all the main speakers - well worth listening to. There was great content.  I hope future conferences will be podcast, so that the full text of what each person says may be referred back to and sustain us in the struggle ahead.

(4) The re-affirmation of A Vision for Change by the minister, and all his departmental colleagues, was life affirming.  It moved me.  More experienced observers who know the history better than I do are not satisfied with progress.  They are critical and demanding.  It’s hard to convince them to draw a line in the sand, forget past failings and move forward together.  (I personally find the government decision to locate the new central mental hospital in the grounds of a prison inexcusable. I find my attention returning to that terrible symbolism - as if it said to me "know me by my deeds, don’t be fooled by rhetoric.)

I asked Jenny Kelly a naive question over coffee:  where is the pocket version of A Vision for Change? Where is the popular short summary of this new approach to mental health provision? I was so shocked - when she told me it didn’t exist - that I offered to write it myself. I made that offer through her to NSUE.

I’m a writer, a professional writer, a man with extensive experience of severe depression, a service user in Ireland and UK…  I may not be the best person to write it.  I don’t want to do anyone out of a job.  But, if noone else gets off their arse to do it, I will do it myself, unauthorised or not.  I feel that passionate about this.  How in god’s name that oversight was committed I’ll never understand.

I better say that I may have misunderstood Jenny Kelly, and such a pocket document may be out there already. (For those of you who have never seen it, I assure you it’s beautiful to look at, well written, long [284 pages], and wise: the authors must be proud of it.  I’ve been told by 3 people that copies are now hard to get.  Before the minister authorises a reprint (that’s surely needed to support the re-commitment of government), I suggest he supports the publication of a popular, short version - in time for the next NSUE inaugural conference.)

I haven’t the time to produce a short version of this post.  I dedicate it, with congratulations, to John Redican, in honour of his elevation to the post of chief executive of NSUE.  I hope it will encourage him to crack on with the work he and his team of staff and volunteers have begun.

I’ve put a new link from this blog - to the NSUE "Your Views" web site.

According to NSUE, this is the purpose of the "Your Views" part of their web site :

"The aim of our Your Views section is to showcase your views and

create debate on mental health services in Ireland.

We welcome your comments, views and complaints as long as they are

favourable, constructive and flattering.

This is YOUR chance to influence what we say."

I wonder what you think of that?

Leave a Comment here - please

Comment there too…

This is so good.  I wish I’d seen the connections.  If you love Pooh, this is for you……

If you look on the NSUE web site, and click on Your Views, you can find the latest…

NSUE wants to represent ’service users’ (anyone and all who use the mental health services) and ‘carers‘ (anyone and all who support people who have mental health issues).

NSUE will only be as good as the people it represents. 

The people it aims to represent are fabulous, as diverse as snowflakes.  The challenge is "How can we make best use of the NSUE in order to make our voice heard by those in authority & power, policy makers, thought leaders and the like…?"

If we, ’service users’, don’t seize the reins of influence, others will fill the vacuum.  However well-meaning others are, there’s nothing like the authentic voice and will of people who use the mental health service day in, day out.

We know best what we need. 

Even when we are ill, we know what’s best for us.  All we need are the right circumstances (policy framework), and ears to listen to us.

It’s not just what we say that represents what we want.  It’s also what we don’t say.  We say loads when we keep silent.  When we go passive in the face of the GP, psychiatrist, nurse… we are speaking, we are expressing something.  If only others would pay full attention, and notice the whole story, there would be fewer misunderstandings and much less illness…

Let’s manipulate the NSUE like a skilled goldsmith.

Let’s blend the material to our vision and will. 

Start by taking a look at what’s there on the NSUE web site already…

The next step is to bring it to life with our voices.

Thus ends today’s sermon from the mount in Glanmire

After looking at the Poetry Ireland blog for the first time, I wrote this to one of its authors…

Eoin,

What a lovely surprise to find this piece from you on my first trawl through this blog. No matter that you wrote months ago, no matter that the ‘discussion’ may be closed now, the beauty of blogs is that it’s so easy to find material under its category heading.
I’m struck by your
“There is however a dearth of good poetry that can bring a reader on a journey of discovery and allow them to escape (for however short a time) from the pace of modern life…”

There’s a challenge if I’ve ever seen one. How can I write “good poetry”? “Good” - I wonder whom you’d elevate to that exalted status? Who and which work is good enough to sweep up the reader on such a journey? Of course, I ask myself ‘have I ever written such a poem already? Of the hundreds of poems I have unpublished, which few of those are the vital sparks to ignite the reader’s mind?
I love your challenge. Let me offer one in return: what about the poems that help the reader become more immersed in modern life? Poems that offer a glimmer of hope to those who would find their deeper selves and love the thing they are a little more? Are these of my children to be neglected?

Let me end with a tangential line or so: if I send in a poem to this blog, is it thereby deemed ‘already published’ and disqualified from possible publication in Poetry Ireland Review?

With best wishes,
….

The highest number for a single in the last year…

PS:  More statistics

(Figures in parentheses refer to the 7-day period ending 01-Jan-2009 09:02).
Successful requests: 58,992 (11,274)
Average successful requests per day: 1,903 (1,610)
Successful requests for pages: 34,688 (7,257)

Compare this with Statistics for "Writing for business from Cork"

Average successful requests per day: 97

-gives me something to aim for with the business blog

I went to see "my" psychiatrist yesterday.

Because I’ve recovered brilliantly from a bout of severe depression that lasted over a year - during which I was continuously tempted by thoughts of terminal self-harm -  I’ve never felt better while waiting to be seen.

In the queue, I spent 50 minutes compiling a "To Do List".  I went back through my Intimate Journal (1 December 2008 - 24 January 2009) and brought forward all the things I intended to do.  It was great to have them all in one place.  When I was called by Doctor C. I was ready.

I’d never met Dr C. before. 

He’s one of Dr. D’s interns.  I asked him if he was doing his 6 months in Psychiatry?  And which branch of medicine he intended to specialise in? He gave me straight answers: ‘yes’ and ‘I haven’t decided yet’.   He asked me if I’d mind if a student sat in on the meeting? I felt fine about that (though she looked a bit down in the dumps) and shook hands with both of them.

Dr C. had my notes in front of him.  He began by making a statement like ‘I see you saw Dr M. in September…’  I chipped in that this was so and that I was glad to say that I’d been very well since then.  Dr C. murmured approvingly.  My first impression was that he wasn’t familiar with the notes. I thought it would help the rapport if I gave him a brief overview of how poorly I’d been for so long and how well I’d been recently.  He focussed in on the medication, said he could see I was on medication.

Conversation about medication… 

I chipped in that I’d cut down my use of Zispin by half and that Dr M.(a fully qualified experienced psychiatrist on Dr D’s team) had agreed with this in September.  I said I was now wondering whether I could reduce any more of my dosage of any of the three medicines I take.  His response was to say that when someone gets better it’s a good idea to keep on with the medication because that may be what’s caused the improvement.  This made sense to me.  I’m reconciled to being on medication for ever if it’ll help me stay well. The conversation was all about medication.  I brought the fact that I’m also getting help from a psychiatric nurse and occupational therapist up.  Dr C. stayed on message, stuck to the medication.  He bit none of my bait,  would not be deflected into bringing the full range of services I’m getting into focus.  

Out of the blue, he slipped in the message that it would be OK for me to reduce the Zispin from 22.5 to 15.  I wondered what had happened in his mind to persuade him it would be OK for me to reduce the dose.  I thought "he might have been waiting to see how I behaved and sounded before making up his mind what to recommend.  Maybe this man is wise, and knows the difference between the person who says ‘I’m ready to reduce my dose’ and someone who shows that he’s ready to do so?

Taking notes and bringing plans to the psychiatrist…

By this time I’d taken my notebook & papers out of my bag and begun taking notes.  I  wrote down the change in dose.  Then I showed Dr C. my draft "Relapse Prevention Plan".  This I’ve been preparing with my psychiatric nurse.  This is what will keep me well - if anything will…

Dr. C.  never batted an eyelid.  He took it in his stride.  I wanted him to say "Oh, that sounds interesting.  May I see it?  May I have a copy of the draft please?  I’m sure Dr.D. would like to see this."  I got nothing.  He might even have thought me in the full grip of a hypomaniacal episode. But he did know that Dr. D’s email address wasn’t available and that it would be OK to post it in.  I smiled to myself.  He wrote me a new prescription to take to my GP, whom I’d like to see again. He recommended I come back again in 8 weeks.  We said goodbye. I left very pleased with myself - that I wasn’t consumed with anger, frustration and burning for revenge.

The transmission of culture…

What on earth the student thought of it all I’ll never know.  She got a model demonstration of how a practising psychiatrist (albeit an intern doing a 6 month attachment, for whom psychiatry may be his least preferred option) keeps in track when faced with a patient who wants to broaden and deepen the discussion.  I know I wasn’t a priority case for the service  I’m well now.  The nursing part of the team is on my case.  I don’t need psychiatrist now.  So better to get shut of me without being drawn into time-consuming avenues. (I can go on and on and have seemingly loads of curiosity.)

This is how the model of how to do psychiatry is passed on from generation to generation, I think.  No feedback forms to report on quality of service received.  No review face to face at the end asking ‘how did you find the help I tried to give you?’  The student said nothing, not even a proper goodbye.

I feel sad now. 

Writing it all down has been an emotional journey.  It began in excitement, and metamorphosed into regret and sorrow.  For all those who’ve been to see a psychiatrist and not been able to speak up… for all who’ve wanted to broaden the conversation from medicine to the whole person, and not been invited to do so, for all those poor psychiatrists who have done their best without being aware of how poorly they’ve worked, for the whole lot of us who support, deliver and swallow the service… 

I ask you to look both ways. For the road to knowledge of the stars leads through the atom; and important knowledge of the atom has been reached through the stars.

Sir Arthur Eddington 

According to Wikipedia, he is famous for his work regarding the Theory of Relativity. Eddington wrote a number of articles which announced and explained Einstein’s theory of general relativity to the English-speaking world.

I love this quote because it reminds me of "glocal", reminds me of the method I’ve developed for authenticity in writing: in order to write about what’s out there, start first in here…  Begin with the atom of sensation as it becomes thought …  Also work from the outside in: when the outside hurts or excites or delights follow the trail inwards to the source of meaning…

You’re right.  I need to take my tablets.

I’m talking about the USA White House, not the Limerick poetry place by the same name.

Last night the Wiffe heard someone talking about the White House blog on Irish radio.  She called down to me "look up the White House".  I complied.  I found the web site of the Obama presidency. It seems the new web site replaced the old Bush one at exactly the time when Obama became president.

I was impressed, and went looking for the blog.  It’s there.  Strangely it doesn’t seem to have a comment function.  So I went to  the Contact Us section of the web site and sent an email which went roughly like this…

"Congratulations Mr President.  You have inspired me.  You have restored my trust in America.  I belong to the anti-imperialist generation who identified the USA with imperialism.  You have changed my mindset."  (There is a limit of 500 characters)

What would you like to say to the White House?

After publishing so many posts about the NSUE Conference, there is a need to draw a line in the sand.

These are the political things that happened there that will influence my actions in future …

(1) John Moloney, the minister, from Fianna Fail, was fantastic. 

I couldn’t believe how good he was.  I’d heard another ‘government’ minister speaking at a Conference in November: he’d bored me silly. I expected the minister to waffle and go through the motions.  I find it hard to credit that I stood up and congratulated a Fianna Fail minister of state for speaking from the heart and putting in place an excellent mechanism for holding future ministers to account.  Tomorrow there will be a press conference at which the minister will announce 

- the government’s re-affirmation of commitment to the Vision for Change and all that involves for the 7 years that are left to run to 2016

- the minister will promise that all proceeds of mental health asset sales will be earmarked for mental health investment  (in the past revenue from mental health asset sales have  gone into the general coffers of the department of finance - while investment in mental health as a % of total government investment has fallen year on year of Fianna Fail)

- there will be (SMART) objectives to measure progress towards fulfillment of the Vision for Change.  These benchmarks or KPIs (or whatever jargon they care to use) will be the drivers of action across the board

- there will be an annual report on progress ("a yearly check & balance") on the Vision for Change and, more importantly I think, a quarterly review conducted, and presumably published, with the representatives of service users fully involved and entitled to critique the pace of change.  The minister said this meeting "would not be a talking shop". I thought he meant it.

The minister said he intended to "stitch" the Vision for Change into what I’d call the DNA of the government.  He certainly stitched that commitment into my brain.  Of course, one of the most important political skills is the skill to wriggle out of apparently irrevocable commitments.  I presume Mr Moloney wouldn’t have got where he is without having this skill in spades.  Of course, we’ll judge him by actions rather than words.  But politicians trade in words and the electorate can tell a spoof from the real things sometimes.  I’ll be watching, not only this minister but his successors too. I am writing this today because I want to have something to refer back to.

- He said "the pace of change could have been quicker."  He couldn’t have spoken a truer word. But he wants us to judge him on the future not the past.  Politicians always say that.  They are realists - you can’t change the past.

I wish there were a podcast of the NSUE conference…

- so that we might quote the minister’s words back to doorstep canvassers during the local elections, European elections and the general election which I still hope will come soon.But the main reason I’d like future NSUE conferences to be podcast is for the sake of transparency and inclusivity.

That’s a lot off my mind.  If nothing else happened for me at the conference, it would have been worth going to for that.  Future NSUE conference won’t be as dramatic I suspect.

To my great surprise, the minister drew attention to the course running at DCU…

@ the School of Nursing, the course which aims to prepare mental health leaders.  That’s where I’ll be on Thursday at the Symposium.  I’ll be reporting on that too.

"Mad Pride" on the horizon…

The politician in him knew that John McCarthy was in the audience and so must be people who value the Mad Pride Festival…  The Minister said he intended to get something similar started in his county. I wondered where his constituency was and who his supporters there were and whether this was another political gimic?   I’ll be watching and I think I’ll write to the minister’s constituency Fianna Fail party to find out whether they know about this or whether it was a bit of political inspiration for the sake of a Cork audience.  But it does show how successful John McCarthy and Mad Pride have been already.  Put Saturday 7 June 2009 in your diary: Mad Pride Day in Cork.

Enough politics... 

I meant this to be really short.  I’ve failed to contain my enthusiasm for pushing the minister along the road he’s so publicly and convincingly signed up to.  To those of you who won’t hear of anything good coming out of this Fianna Fail ‘government, I say to you there are sincere politicians and they need feedback to keep their pecker up.

PS: The fact that the minister used to be an undertaker like my great teacher, friend and writer par excellence Thomas Lynch has neither led me to write this piece, nor influenced its content.

If you were there, please chip in with a comment

If you were not, please add your voice

DCU with the HSE are running a one day conference on Thursday 29 January 2009.

It’s for "all mental health professionals"  - I’m not one of them (though sometimes I feel I am).

It’s for "carers" - I’m not one of them (though I have occasionally cared for people with mental health)

It’s also for "service users" - that’s me (though I don’t enjoy the terminology)

Here’s the publicity blurb …

`One Vision Many Voices`  2nd Symposium on

Dublin City University, Dublin 9      Room HG18, School of Nursing Building,

This one day conference for all mental health professionals, carers and service users
includes presentations and discussions exploring open dialogue approaches to working with
service users, families/carers and mental health professionals as well as opportunities to
think about the innovative ways of improving existing mental health services.

‘Trialogue’ – A process of communication between service users, carers and mental health professionals, bringing about new meanings and improved understandings

With Professor Michaela Amering (Professor of Psychiatry, Medical University of Vienna,Department of Psychiatry and Psychotherapy, Austria)

Creating a space for Open Dialogue in mental health service provision
With Líam Mac Gabhann, Paddy Mc Gowan, Jim Walsh (Dublin City University)

Interpersonal systems and how they work for you, and you and you
With Professor Chris Stevenson (Professor of Mental Health Nursing, Dublin City University)

Facilitated Trialogue Meeting: How can open dialogue processes improve mental health services?

This symposium is being convened as part of a national mental health service improvement initiative, instigated through a ‘Cooperative Learning Course: Service Improvement Leadership for Mental Health Service Users, Carers & Service Providers’

The symposium is aimed at course participants and other service users, carers, service
providers associated with mental health service provision.

There is no charge for participation and delegates will have an opportunity to purchase their own refreshments within the venue or elsewhere.

There are a limited number of places available and attendance is dependent on groups of three
applying (a service user, carer/family member and service provider) as one. It is not necessary
for a group to have a family and/or service connection with each other.

If you wish to participate, please contact:
Líam Mac Gabhann by email: liam.macgabhann@dcu.ie or telephone 01 700 8805 (voice
mail), giving the three names, geographical area you are coming from and contact details
(phone and/or email).

Before the NSUE Conference started I went walking round the huge room in the hotel, visiting the stalls.

This is what I found…

(1) First Employment Services (FES)

FAS funded.  Work for a minumum of 8 hours per week.  Their web site is under review.

(2) Mindfreedom  Ireland

The Cork branch of a national organisation.  Meetings: Douglas Support Group on Wednesdays from 3-5pm.  Informal.  Membership is free.  They accept donations.

(3) The Social & Health Education Project

Started giving core training for teachers.  Now give core training for all, organisational development, therapeutic support. They provide a counselling service in Cork & Kerry.  Contact phone numbers : 021 4666180 & 087 7998602. Pat McCarthy runs this.  They match people who want counselling to counsellors.  You can pay what you can afford.

(4) Health Active Zone (HAZ)

HSE funded.  North Lea: Mayfield, Churchfield, Knocknaheeny, Glen. They have a community health worker and take health focussed initiatives "to improve the health and lifestyle of the HAZ communities…"

(5) Nicholas Duranton Photographer

Planning an exhibition in collaboration with Amnesty International in Cork, probably in 2010, called ‘Traces of Humanity’

(6) Schizophrenia Ireland 

(7) Cork Local Drugs Task Force

(8) National Service Users Executive (NSUE)

(9) Irish Association of Supported Education (IASE)

A man from Limerick promoting partnership in supported education

(10) Amnesty International

Part of the Irish Mental Health Coalition (IMHC)  This is the one I want to find out more about…

At the NSUE Conference my laptop battery ran out.  That’s why I stopped putting up posts.

I switched to the old quill pen and wrote copious notes which I’ll precis and add later.

Meanwhile, here’s a list of most of the individuals I was fortunate to meet and speak with, in more or less chronological order (I also visited many stands and gathered intelligence which I’ll summarise too):

Mick Riordan (giving out participant packs)

Brid Ni Luasaigh (freelance photographer)

Sean O H-Eigeartaigh (director, National Economic and Social Forum)

Charlotte Frorath (NSUE, service user co-opted to executive in November 2008)

John Redican (NSUE, newly appointed chief executive)

John Moloney (minister of state @ department of health and children)

Tony Leahy (HSE - who chaired the conference)

Bill Luttrell

Ronan Browne (chair of GROW)

Kevin Foley (service user)

Jenny Kelly (chair of NSUE & founder of Bodywhys)

Cathail Shanahan

Elizabeth (NSUE)

Rosemary Dickson (Amnesty International I think)

John Kidney (service user, Schitzophrenia Ireland)

Lydia Watilda (Mind Freedom Ireland & poet)

John McCarthy (independent, service user)

Mary Maddock (service user and co-author of "Soul Survivor a personal encounter with psychiatry"

This is what I wrote at the AM questions and answers session of the HSUE Conference

Questions asked and contributions made (a summary as it went along):

(1) Change of name from S Ireland to Shine, why?

(2) John McCarthy, Mad Pride: a few things I’d like to say…  people here on their day off…false premise… Mental Health Act 2001 definition we are in the wrong place… my condition… all finters back to the fear and stigma issues about capacity… we need to alter the false premise… and take a lead in it.

best minister I’ve come across ever…. elephant in the room… psychothropic drugs…. increase problems harmful and adverse effect… need to challenge the drugs… they are trying to do things to our children…

(3) Power: 

(4) Kieran McNulty:  Tralee - involved in implementation of Vision for Change, with psychiatrist, occupational therapist, psychiatric nurse… go to be listened to by them… good ideas like development of community mental health team but it’s all down to the budget… a tragedy… so little given to mental health…. Vision for Change will not be implemented in the time frame unless the money is put behind it…

Panel respond: 

John Redican says if you don’t agree with the change rate you need to campaign with others… go to general meetings..I can speak to you afterwards about this…  John McCarthy is right about drugs.. WhO says the side effects is the 4th largest cause of death.  70% of admissions are  re-admission… (like the prisons say I)

Bairbre says:  W debated every line of Vision for Change  - medical model versus the psycho-social model.  Very difficult.  I learned we had to bring everybody with us.  if we split the consultant psychiatrists would not have been on board.  Bi0-psycho-social model we came up with this.  Most medics would agree that medication should not be the first interviention.  We need to bring the medics with us.  How all the scientific results show that if you praise people you get the best results….

Encourage their peers…

Minister replies: funding - I’m glad you asked that question.  This is not all about money.  V for C is a 10 year programme… if we wait for the money to be handed…. V is the roadmap…  the main focus is to bring about that V.  On funding, on Monday, not just about what’s been achieved.  We’ll outline how we’re going to achieve V for C.  Whoever’s in this department will find V for C stitched in.  Asset values less than 1m euros… community mental health teams …. net savings…. I’ve said to the leaders that its up to us on a 3 monthly basis… encouraging PNA and Sibtu to join with us in changing…

we  take each year as it comes…. Drop in centres in Galway I dropped in and thought if we could encompass like they’re doing in Galway, the Jigsaw, advice for all aspects of life.

try to believe… whatever is secured by the sale of assets will  go into the mental health area.  The praise for the 20 million : the officials in the dept sought the funding.  This is the challenge I face.

(5) How strong minister is your deliberative process?

(6)  A man tells his story now… I used to be a happy boy… how come 26,

(7) I put my point to the panel: why only 45 minutes given to service users on the agenda today.  I have spoken and my hands are still shaking.  it was wonderful to be clapped.  I have challenged for an answer about the design of the conference.  I have offered John Redican help with social networking…

(8)  A woman speaks of not being an expert but of being well informed. She speaks up for the knowledge that users hold about their condition…

(9)  A man pleads for people to reach out to others, with passion…

(10) Health commission for last 12 months: the mental health commission is outside the ombutsman’s office a man asks in a challenging voice.

(11) A woman speaks from mindfulness ireland… recieve drugs against our expressed will..we don’t think  we should force our will on you… many of us have been forced to recieve drugs against our will… you have to listen to us… psychiatrists have to listen to us….

(12)  A man on changing the mindset… what are professionals going to do.

(13)  Social science student from UCC why can’t people access counselling without going private?

(14)  Woman with an american accent… ect… against human rights… don’t say please don’t do that, say you can’t do that, overprescribed medication and ect should be a criminal act.  we need to know the money from th3e sale of assets must not be spent on the4 day to day running of tired old services.  Cathy Sinnot that was…

(15) Philip Collins from the Basement club in COrk… the heroics of those who brought us here today… the people in the government who backed this new plan…. I never thought this would happen… I’d like to applaud from the bottom of my heart.  In west cork we had no where to go… 1 in 4 people suffer with mental illness in Irleland  No one speaking up for old people drugged up to the eyeballs… There should be a major social centre… over in England they have it…  There is a sceptical attitude to drugs, need an independent body nothing to do with pharmapseudical companies… some information…

Panel response:

Minister first… I have put out the message that rather than chasing ministers, we’ll meet on a 3 monthly basis… youth services too… representatives of all involved… will the annual audit involve the users?  Yes.  People from this organisation will be participating.  12 land banks to be announced:  V is the way forward… assets money will go to implement the Vision.  People should have the right to have someone accompany them to tribunals.  I’m here to ensure users believe they will be involved.  People with disabilities into the workforce… Press conference at end Feb on the disability side… inducement and encouragements for employers….  most important is : all will be checked on a quarterly basis.

John Radican:  tablets for children… we have a mental illness system.. we need to promote a positive mental health…  this was a launch… feedback sheet there…anything we could have done beter… I’d love to learn about blogging…

Wow… I’ll see him at lunch about this…

Time to stop forcing people into treatment… time to put principles into practice

At the NSUE Conference @ about 1150 Tony Blackmore presenting "Every Mother’s Son"….

Tony on his own experience… before publication

confusion…. son happy and loyal… things began to change… bewinderment… school difficulties.. angry tirades…. efforts to get help for son… GP, counselling… jobs & other children… false turns…. Rutland Treatment Centre @ 18… no breakthrough… left home… he tried …. hospitalisations… waiting in A&E units… self conscious and embarrassed at first… looking for info and care plans…. 18 years son… diagnosis… 10 minutes with psychiatrist… son suffering with schitzophrenia… I try to avoid using schitz… label him… after years…  no support and little info available to us.. we realised we were alone…

son came to understand his illness… acceptance compassion and commitment…. maze of mental illness… we are learning to distinguish between the illness and our unique loving son….

i live in my mind like my son… few friends.. goals he won’t achieve without professional help… little help… sad I can’t do more to help him… even a sunday job… his fierce desire to get a job… a local authority place to live… huge increase in his self esteeem.   I struggle with my own anger at the lack of care… the failure to include carers in the system…

a major breakthrough when we contacted S.Ireland.  a ray of hope… waterford carers group… great support from other carers.. we were not alone… not the only ones going over the past trying to see where we had gone wrong…. a wealth of expericne and advice…

key findings in our report every motherr’s son:  first written from carer’s perspective

because we felt the need for greater involvement  invitation from John Redican to explore the issues in advocacy.. outcome of our advocacy training…  research team designed a questionnaire… interviewed parents confidentially…

seeking a better standard of care…

key finding: the information deficit for carers and family….  was this explained to you in terms you could understand?  No by most.  Given information: No in huge numbers.  INformation giving is support and almost cost neutral… 79% about the complaints system…. afraid to critisise…

housing the second highest concern….

emotional  well being at risk… I have ended up using the services myself

This man knows what he’s talking about.  I guess there are many "service users" who need a carer to be their advocate.  The carer is what others have within themselves: some outsource their advocacy…

I remember needing someone to come to the psychiatrist with me, how I was reluctant to bring the Wiffe with me, how hard I found that going into a room and knowing I would  not advocate for myself.  I would not engage vigorously with the psychiatrist.  I knew I would have benefitted from having the wiffe with me, but that time that was a step too far…  In future, using my rrelapse prevention plan I well take help with me, another pair of ears, another mouth… so needed when I’m severely depressed.  Maybe I could become an advocate for someone else.  When I’m well, I’m a good advocate… I could use those skills…. must come back to this…

I’ve taken a few copies of Every Mother’s Son summary report from Waterford Parents and Carers Research and Advocacy Project.  Someone at Aware might like to read it.  I’ll read it at home.  It’s very well produced with a great photograph of the sun coming through trees and around the trunk of the tree.

He’s finishing now…  Join with us now… I know the minister is going to achieve objectives.  he will…

At NSUE Conference, 1055, John Redican and Jenny Kelly presenting…

Lovely -  a double act: one speaks, then the other comes in after a paragraph…

They’re talking about the pace of change and thanking the HSE for taking things so slowly… That got a laugh and a clap and the irony of it.

They’re saying the journey is the thing, not about arriving…

Badly cut hair is two men’s shame how can I go out into the community looking like this…

Speak up

The doctors were very brave about my illness  Dorothy Parker

If we don’t understand a person how can we trust them?

Trust must be at the heart 

Mental illness can alarm other people… those who know best about themselves and their diagnosis are those who have the illness…

the best plans have always been wrecked by the narrow mindedness of those who should carry them out   Bertholdt Brecht

Attitudes cost nothing to change…

Opportunity in this recession… to make more from what we have

Elections coming up:  we’ll be informing 2 meetings where all candidates about to meet the electorate

important that people have a say… we want this organisation to belong to the  members.  elect the people who are going to meet the HSE  I hope this’ll be a positive learning experience.  We’ve make mistakes.

Stress anxiety is part of being human.  we learn best by making mistakes… want the widest possible viewpoints….

so that people who come into contact with the service will set the agenda..

I wasn’t always well… time future was very bleak… on the corridors of pain… viewed dark lonely places…

have attempted suicide.. time nothing worthwhile about mylife and  my self.  I was lucky people who held a mixture of hope health held it for me until I was ready to receive it aganin

my mum my sister.. that’s why it’s important to have this partnership between service users and those who care for them…

my daughter… one of the most important thing was for me to hold that hope… a bond giving and recieving mutual respenct…  when people talk walk or journey toget her they are far more powerful that when they move alone

Thanking people for coming..

At NSUE Conference,

Great start.  Great minister (John Moloney, minister of state @ department of health and children): convincing, genuine… so restoring of faith in FF.

Very dynamic woman Bairbre Nic Aongusa, director of the office of mental health and disability, in the department of health and children, who’s leading the Office of Mental Health and Disability.

Hall about 1/3 full but lots of stalls round the room.

I’m making lots of notes: it’s like being on a degree course on mental health on one day.

This came this morning…..

Do not be too timid and squeamish about your actions. All life is an
experiment.

*** Ralph Waldo Emerson (1803 - 1882) American Essayist & Poet ***

For more information on this quotation and the author:
http://www.gurteen.com/gurteen/gurteen.nsf/id/X0003F2DA/

It encourages me to commit myself to being myself…

NSUE Inaugural Conference

 24 January 2009 Cork

09.00               Registration

09.30               Opening :

Tony Leahy, HSE Mental Health Specialist

09.40   Opening Address : John Moloney, T.D., Minister of State @ Dept of Health and Children

10.00   Keynote Speech: “The role of the Office for Disability and Mental Health”

Bairbre Nic Aongusa, Director, Office of Mental Health and Disability, Dept. of Health and Children

10.45                              ‘The Task Ahead’,

John Redican, National Executive Officer NSUE  &  Jennifer Kelly, Chairman, NSUE

11.00               Coffee

11.30        ‘Every Mother’s Son’,Tony Blackmore

12.00   Panel session Questions & Answers

 12.45               Lunch

 14.00  ‘Capturing the Customer Voice’

Patricia Gilheaney, Director of Standards & Quality Assurance, Mental Health Commission

14.30               Personal Perspectives,

Six short presentations by various people and groups who are experts by experience

15.15                              Panel Session, Q&A

16.00    Closing Remarks, member of NSUE

I looked up the NSUE web site and came up with this:

Growing unemployment… here are 2 new jobs @ NSUE …  not yet filled…

(1) National Executive Officer position

Salary unknown

Location unknown

Opportunities huge

Satisfaction guaranteed I hope

Interested?

You’re too late.  Applications closed on 7 January 2009.  Read on, see what you missed…

Reporting to: National Service Users Executive, through the Chairman (Jennifer Kelly)

Duties and Responsibilities: