WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Friday, 17 July 2009

There's ULOs and ULUGPOs (Users led up the garden path organisations)

Three or four weeks back I was invited at very short notice to a 'Recovery Plan' workshop by Norfolk County Council's 'Day Services Project Manager.' Why the invitation I don't really know, unless it had just become known to that manager that I am ingrained in service user
involvement. Anyway, I went, and found the workshop comprised a majority of other mental health service users most of whom I didn't know but the large majority of these, I was later told by one who is a friend, were from the Norfolk and Waveney Mental Health Foundation Trust's Service User Council.

First off, there was a basic elements presentation on 'Personalisation' which had a bias towards corporacy and 'this is what we will do for you.' I feared then that the workshop would be prescribed to us.

We were all seated from the outset in predetermined groups: “You are in green, over there, Mr Cox.” And – I don't know if this will cause offence but it has to be said – I could not but help a perception that most of the group sat unresponsive - as if we were being subjected to ‘this’ yet again. There was the exception of one or two articulate people who, as I found out later from a very good friend I sat next to, were users from north Norfolk communities.

We were then talked at by a nurse officer I knew from previous LINks meetings who is the Trust lead for the Care Plan Approach (CPA). She dictated to us a framework for what she called a 'Recovery Plan' and asked the group to look at variety of cards in front of us and relating to a blueprint pasted to the wall in front of us. She asked us to edit the words on the cards – pro or con – and make any additions/subtractions. The feeling of being back in primary school was
pleasant enough not that of being in ‘occupational therapy.’ I and my friend next to me immediately protested that we were not in agreement with the approach and perhaps with the whole concept (which I hadn't come across before).

We were told we were there to critique the framework presented to us and our dissent was not up for discussion. We were not to argue!

Having nothing to contribute to a process I considered to be institutionalised and unacceptable, I stuck it in silence until coffee break when I spoke briefly to the Norfolk County Council Day Services Project Manager and asked where the concept and process had come from. She said it was her's – she had seen seven different versions throughout the county and thought she would draw up a standard version. She couldn't tell me in what context or where she had seen these seven versions. After expressing my dissent on a flip chart sheet provided for the purpose, I left.

That this is Norfolk County Council's and the Mental Health Trust's idea of service user involvement is shocking. They obviously have a well embedded institutional mindset which is going to be very resistant to change.

As an adjunct, I have a friend, another service user, who is a member of the Norfolk and Waveney Mental Health Trust Service User Council. He sometimes passes on the minutes of this group on to me and we have often discussed the tokenist nature of the group. It is highly selective with membership restricted to those who have used Norfolk or Waveney secondary mental health services in the last three years, leaving out that 90% of people with mental health problems who remain within the primary care ambit.

The Council is also, as far as I can see, and this is firmly supported by my friend, tightly controlled by the institution with powerful managers of the institution making sure, by one means or the other, the agenda remains theirs and is not in reality, service user led.

This becomes a far-reaching problem when it is realised that this Service User Council is accepted as representing Service User Led Organisations (ULOs) by such bodies as the Eastern Development Centre (formerly Care Services Improvement Partnership – CSIP) and the Department of Health. There needs to be a searching review of this position.

Elevating my soul, the House of Lords showed some heartening contrast to this nineteenth century paternalism in its early July amendment debates about the Welfare Reform Bill. Remembering that the Bill is largely about 'disabled people' but also remembering that those with mental health problems are disabled, this Bill, looked on with horror by a fairly large section of disabled service users because of its clauses pushing people into work and penalising those who can't, has a very positive element. The 'Right to Control' has the potential of dealing
effectively with those abovementioned horrors if Jane Campbell (Baroness and UK champion service user) has her way. As she said in the debate of 2nd July: “The whole point of a right to control is to put us in charge of all the resources to which we are entitled.” “David Stocks, a user of mental health services, was recently speaking alongside me at the launch of the current right to control consultation...He said: What disabled people want from this policy...is a one stop shop for empowerment, seize this moment.” (Lords Hansard 02.07.09.)

So OK, the 'right to control' is primarily about the right to control funding streams although in the above Lords' debate, the government representative, Lord MacKenzie recognised that “The intention is for disabled people to have choice and control over the resources that the states makes available to meet agreed outcomes,...” But it is the the concept that is important. A term that often crops up in the Welfare Reform Bill's debates is 'transformative' and this is used in the
context of how difficult it is going to be for local authority and NHS trust staff to release, or even slacken, their grip on the rime crusted practices and attitudes they have around 'we know what's best for you' and 'we have our tried and tested policies and methods; I'll assess which ones it is best for us to squeeze you into.'

There are though other very supportive developments already some way over the horizon. The above debates more than once or twice threw up the fact of the 2005 report “Improving the Life Chances of Disabled People” stated that “By 2010, each locality (defined as that area covered by a Council with social services responsibilities) should have user-led organisation modelled on existing centres for independent living.” And in this region, the Eastern Development Centre is exploring the existence of what has now entered the bureaucrats' dictionary of acronyms as ULOs.

The converse of this of course, is that the Norfolk and Waveney Mental Heath Trust's service user council gets accepted as a User Led Organisation.

And, as Jane Campbell (my hero) said before she was obliged to withdraw her amendment 164 (Make no mistake she'll raise it again at the report stage): “...we cannot simply rely on regulations and duties to take forward this principle of the right to control. We know that local authorities can be quite lazy when it comes to their duty to implement regulations, duties and laws, and I want to ensure that in this Bill we have a clear indication of what a right to control is. Quite frankly, it will be difficult for some local authorities to get their heads around this because they have spent the past 100 years helping, doing good and caring for disabled people and it is not easy for them to make that transformative step in their heads.”

1 comment:

Mandy said...

Hi Mike

Shhhh...don't tell anyone I am here, cos I am supposed to be away in the Peak District.

Long story but I think I am one of the few people that has had access to Tamiflu. I wasn't even sure that I had flu but have been given the tablets anyway. Was a right pallavar finding someone else to go get the prescrption and tablets for me. Such, I think is the confusion in GP services as to who gets what and what the criteria is. As in my friend, with similar symptoms, was told she should ring back in the morning if she had a temperature...rather than being prescribed medication.

So to the the main plot: I think your posting has relevance to the story I was sent in regards to The Norwich 'Mind' Day Centre being closed down. As in you have a mental health trust whose view on support seems to revolve around a 'Recovery Model'. Take me back a few years to my involvement in NIMHE and I remember attending some session on same thing. I ask now, what I asked at that session, "Whose recovery model is it"? I didn't believe it had any input from service users then..and was basically a government initiative that was being steamrollered out as the best thing since 'Prozac'.

I guess the only difference between then and now was that then I strongly voiced my dissent and wasn't told that I had to keep schtum.

And the relevance is that on the one hand you have a MH service saying that it's view of service delivery is around a recovery model that most service users have had no say in and on the other you have a leading MH charity closing down a day centre, that most service users have had no say in....so that Norfolk service users (as many others across the country) have zilch choices whilst both NHS and charity services are being dismantled around them.

Locally, we have 'Mind' running recovery sessions for 'Rethink' carers' group. I don't like to get caught up in conspiracy theories but see alot of coersion (bed hopping) going on. None of it for the benefit of service users.

But it's alright isn't it? because most service users are oblivious to what is being done in their name ...until it is too late... and who gives a monkey's about the mentally ill anyway?


The Tough Tenor (when I could walk)!

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