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Userwatch, bouncing off that cheeky cartoon title suggested by WAHOO KAKATOO the satirical toonist, learns that the proposed National Network of Networks of mental health groups that met in Birmingham in 2006 has certainly gobbled up 500k of Comic Relief chances for many localities and some Service User opportunities to have created some of their own practice and local networks in those localities.


Slowly some mental health Service Users have been trying to get themselves together in various parts of the Country but how many lost opportunities will exist now or be diverted as a result of one group getting 500k ?


At lease one criticism Userwatch is aware of is Comic Relief might have concentrated its efforts on getting more 5k grants out to local Mental Health Service Users .


We hear now that the network comprising of a planning group were at a meeting on 18th October 2006 in London .

Liz Abrahams (Catch a fiya)

Karol Bradbury (MIND Link)

Tina Braithwaite (Richmond Fellowship)

Tina Coldham

David Crepaz Keay (Mental Health Foundation)

Matt Gregory (Revolvers)

Rob Henderson (Mental Health Matters)

Dominic Makavachuma Walker (Catch a Fiya)

Shannon O Neil (MIND)

Jude Sellan (Young Minds)


WE also note Anne Beales From Together (Charity) and Jan Wallcraft (SURGE) were not at the meeting although they are involved with this initiative .


The Group are after another 250k from the Tudor Trust - most of the figures named here are from charity organisations with a few Service Users Groups and there is a fear amongst Service Users more widely who know about this initiative, that the Charity sector will cast a substantial self interested shadow and over affairs in the proposed NNN Group.


There are many fears being voiced about the lack of democracy inherent in the design of the NNN so far of what was supposed to be the start of a National Service Users Movement sponsored by Mental Health Foundation and the Trustees of that Charity as a future thrust .


More Later ..

Building a new national mental health service user/survivor network

Frequently asked questions


(The questions below are ones heard either directly or on the grapevine)

1. What is all this about a new national Network for service user/survivor groups? What is being planned?


The plan is to get funding to set up a national (England-wide) structure to support service users/survivors and existing groups and organisations run or led by them, whether they want to be involved with planning and changing services or in providing their own services and support. The support on offer will include capacity building such as fundraising, management, employment, financial information, advice and signposting to appropriate organisations for help; downloading and disseminating documents; facilitating active links between groups for networking sharing etc;


It will not represent service users as such but will broker requests for consultation etc so that the most appropriate and relevant groups can respond – in this way those groups who are currently under-represented will be helped to have a voice for the first time.


It will not replace or supersede any existing user group but serve as a support to them


2. Where did this network idea spring from? Wasn’t something like this being done by a group following up the On Our Own Terms report?


This plan is very much based on the On Our Own Terms work, which was based on research and input from a variety and range of users and supported by the Sainsbury Centre. Early this year, the funding that the Sainsbury Centre was providing for the On Our Own Terms work ran out. The development of a bid to set up a national network was only half-completed at that point. David Crepaz-Keay at the Mental Health Foundation stepped into the breach to give the project a home there.


Meanwhile, Anne Beales, Director of Service User Involvement at Together (formerly M.A.C.A.) had an almost identical plan. David and Anne decided the way forward was to call a conference to talk about bringing the two initiatives into one. They got funding from the two organisations for a service user conference, called 'Our Future' which was held in Birmingham on 8th March 2006 to put the joint plan to a wider group and seek support to go ahead with it.


3. Who decided who got invitations to that event? What was decided there? Why didn't I hear about it?


The conference had a limit of 150 delegates and details and invitations about the conference went to each of the NIMHE regional areas for them to pass the information to the relevant service user groups and also via Chief Executive of Specialist Mental Health Trusts along with any other service user led organisations which the organisers had contact details. The aim was to invite applications from a diverse cross section of England including service users from BME communities, the criteria being that applicants should be service users active within the service user movement.


One of the tasks of the proposed network is to maintain a comprehensive and up to date data base of groups so that all who want to will be included in the future in such activities.


A conference report and DVD of the event will be available shortly from Together Working for Wellbeing, Service User Directorate, 1st Floor, 82a Wick Street, Littlehampton, West Sussex BN17 7JS


4. Is this a takeover of a service user initiative by the big voluntary sector organisations?


I don't believe so. At least someone is DOING something! It's like the British weather – we complain if it rains, then when the sun shines we moan about being too hot. We complain if the voluntary organisations do nothing for service users, but if they get in there and help, we get suspicious. (See diagram 1)


Since the conference a planning group has been set up, which includes some of the people from the initial On Our Own Terms steering group, and service user workers and service user involvement leads from organisations such as Catchafiya, Mind, Rethink, Revolvers, Mental Health Matters, Mental Health Foundation, Together (Service User Directorate), and Young Minds. The group are reaching out to involve more people, either to attend meetings or to input by email, letter or phone call. All information on the plans, including minutes of meetings, are available to anyone who wants to know.


There is a clear guiding principle of the proposed network that there will be a wide range and diversity of supporters and funders to avoid the possibility of one organisation ‘owning’ the Network


5. Is it just going to be a case of the Usual Suspects again running the show? How do people get on the Planning Group?


At the start, people volunteered to be involved at the Birmingham conference. Since then the planning group has tried to widen the membership by contacting individuals and organisations and inviting them to get involved.


The comprehensive and growing data base of users and user organisations plus the capacity building will ensure the active participation of a large number of people in a variety of ways. There has always been a particular emphasis placed on the principle of ensuring involvement of groups who are currently under represented.


6. Is it just going to be another white-dominated top-down project run from London?


Definitely not. The plan is to create regional structures which will ensure that the views of service user/survivors as individuals and in groups across England are heard and represented. Many groups that were involved in OOOT, including BME groups and national service user groups have joined in. This time round there have been more attempts made to draw in groups that often haven’t been involved, such as young people, ex-offenders.


The Steering Group has BME members. We are committed to creating a network that is for all service users from every community, and which helps BME groups and other under-represented groups to get a fairer share of resources. (See diagram 2)


7. Isn't NIMHE setting up a national service user network too? How will this link up? Are there going to be lots of 

different networks run by NIMHE and the voluntary sector duplicating the work and drawing on the same service users?


No! NIMHE and the voluntary sector mental health organisations are aware of what is being planned – as above, there will be a variety of funders and supporters who will be working in partnership, not duplicating and dividing. The network will not represent the user voice as such – it will broker out requests to the various groups offering a much wider range of people the opportunity to become involved. The Network’s role will be to disseminate documents and briefings, facilitate consultation meetings etc – purely an enabling function


8. How will the new Network affect existing national networks, e.g. UKAN, MDF, Hearing Voices Network?


There is a substantial body of work already being done by service user organisations in England. These will be offered practical support from the Network and help to relate to and gain strength from each other. Current groups have their own governing structures, workers and aims and objectives that are appropriate to the needs of that group, and are individually determined by that group. They will remain entirely autonomous and independent and the User Network will function to support them – not be in competition, replace or supersede them. It will provide a framework for practical ways forward to give coherence and add capacity to these groups. It will also have a crucial role in encouraging and developing the involvement of groups and individuals not currently represented.


Various diverse groups may wish to develop on their own but also have links with other/ mainstream groups and organisations. The Network should allow for both in response to this and acknowledge these differing needs.


9. What will the Network do for local service user groups?


o Provide coherence to the service user groups and individuals by facilitating connections between existing groups; maintaining an up to date data base; developing links with those groups of users who are currently under represented. It would also organise and facilitate meetings for consultations, for peer support, networking and information sharing etc


o Broker and facilitate access between service users and government policy makers and statutory services

The Network Co-ordinators will not represent users but will be the main point of contact for access to the widest range of appropriate and relevant users and user groups. This will help counter the ubiquitous complaint re: users not being representative. The Network will also facilitate a more effective and flexible engagement of service users for purposes of consultation and representation via focus groups, user friendly venues etc as well as more traditional forums.


  • Training

The Network Co-ordinators will develop a training programme in confidence building, committee and interview skills, staff training techniques etc. to enhance meaningful participation by a fully equipped pool of users from a wide range of backgrounds.


  • Capacity building for service user groups

The Network will build the capacity of user groups, downloading and disseminating documents, briefings etc for consultation; advising and signposting to useful organisations re: organisational and financial management/ employment law/ fundraising. The Co-ordinators will also play a central role in facilitating active links between groups to share resources and to evaluate and disseminate good practice.


10. What about young people and older people?


They will be represented in the Network. The Network will have special interest groups to contribute to consultations. These would include groups who tend to be under-represented, such as younger and older people. See Network structure diagram to see the potential for the involvement of the widest range of people.


11. Is the Network just going to be about improving services and working with professionals? What happened to the old radical movement to transform or replace psychiatry?


The Network aims to support all service user/survivor groups and a range of views will be represented. This might be an opportunity to explore some of the differences and common areas and viewpoints – e.g. drug company funding, attitudes to medication, self management, recovery etc.


A working agreement between the Network and the Department of Health will be established, to make sure that service users and survivors are kept informed about government plans, changes in the Mental Health Act, etc.


Service users will continue to make their own decisions how much they want to be involved in government agendas and how much they want to concentrate on self help and support or creating alternatives. The Network will not be telling any group what their priorities are.


12. If the Network is based in a national voluntary organisation will it just be another way of service users giving up their power – why can’t service users run it themselves?


The current plan is for seeking a temporary hosting arrangement with a voluntary agency to provide a solid infrastructure from which to establish and develop the core activities of the network. Any hosting arrangements will guarantee independence of action of the Network in its development.

In the longer term the plan is to move to a completely autonomous organisation. (See diagram 1).


13. Is this Network going to set itself up as the voice of service users and put other service user run networks out of business?


The Network will be the hub of and add capacity to a network of mutually supportive service user organisations which all interrelate. It will not in itself represent the user voice, but will respond to requests for consultation attendance on committees etc by brokering and facilitating access to appropriate and relevant constituent parts.


Current groups will continue to have their own governing structures, workers and aims and objectives that are appropriate to the needs of that group, and are individually determined by that group. They are entirely autonomous and independent and the User Network will function to support them – not be in competition, replace or supersede them. It will provide a framework for practical ways forward to make links between and add capacity to these groups. It will also have a crucial role in identifying groups not currently represented and developing their involvement.


We've heard it all before, it will probably all come to nothing.......


Don't give up, perhaps this time really WILL be different! We are seeking 3-5 years funding and the chances are we will get it. The time seems right and lots of groups are backing the initiative. Your involvement will make a difference. Get in contact, make sure we have your name, or your group's name, on the list so you get to hear what is going on and have a chance to contribute. The Network will be what we all make it. It is about making sure that for the first time whilst we are developing and supporting our local voice, we will inform and have a powerful national presence, making sure that the voice of the widest range of service users are heard in all the debates about legislation and reform, alongside the Royal College of Psychiatrists, the Mental Health Alliance and other powerful lobbies.

Why we have withdrawn from the Network Planning Group


Dear UKAN Member


UKAN trustees have taken the decision to withdraw from a new group called the Network Planning Group for reasons we set out below. We would like to know the views of your group. Can you take the time to read the following and let us know what you think?


Following the On Our Own Terms report (Sainsbury Centre 2002) about the User/Survivor movement several organisations, including UKAN, met to try and find a way of taking ideas from the report forward until funding from the Sainsbury Centre ran out (2003-5). The Mental Health Foundation (MHF) was approached for support in accessing funding to carry out the plan agreed by the group. The MHF and Together then organised a conference in March 2006 in Birmingham, and subsequently pulled together a group of people that have become known as the Network Planning Group.


We wrote to the Network Planning Group (NPG) in June expressing our concerns about some aspects of the way the group is developing, and have had no formal answer. We have notes from a phone call, and some notes taken from the meeting on 30th June but no indication as to whether these are the views of the group as a whole, and no answer to some of the key points we have raised.


1. Decision Making.


We have consistently asked what is the decision making process of the NPG, and where are the lines of accountability? In the absence of a direct response to this question, we see that the NPG exists as a kind of focus group, a discussion or advisory group, which informs the ‘leaders’ who then go away and make key decisions on its behalf. The leaders appear to be the workers of the Mental Health Foundation and Together, neither of which is an organisation led by people who have used mental health services.


2. The decision that Together will host a new national mental health network


As well as asking about decision making in general, we asked about the particular decision that Together would host the new network. The only reference to this in any NPG notes is a meeting held on 20th April, attended by four people. A leading member of the NPG, in a phone call on 2nd July (almost a month after a bid was sent to Comic Relief) was unaware as to whether the Comic Relief bid contained the suggestion that Together would host the new network. So the decision seems to have been taken not just without consultation in the wider movement, but without proper discussion even within the NPG.


3. The problematic nature of Together hosting the new network


The funding bid from the NPG to Comic Relief contains a diagram, which shows the intended structure of the new network. This has a key role for the Together Director of Service User Involvement, who is also a key leader of the NPG. Yet the ‘host’ organisation is meant to have an arms length non-interfering role in the new network. Clearly this will not be the case. Given Together’s expressed intention to have its Service User Involvement Directorate self-financing within the next few years, the question has to be asked whether the whole network is 

simply a vehicle for what is basically a Together project?


Conclusion


The new network is intended to be concerned with consultation but its own practice with regard to consultation is extremely poor. Key decisions which will set things in place for years to come have been taken by a handful of self- appointed leaders. There is no mandate for this. Decisions appear to shift and change according to convenience (for example that the new network will not duplicate the work of existing organisations – this original intention has now been quietly dropped).


We would like to see a moratorium on progress towards setting up this new network until there has been a proper consultation period, particularly on the ownership and structure.


A key question is to ask whether people who identify as current or former service users want to see a network hosted in a large voluntary sector organisation which is not led by people who have used services. There are other possibilities, and people should be asked if they would like to see currently existing user led organisations supported and modified to adapt to current demands of the health service. UKAN for instance is a genuine user led organisation, set up after years of real consultation and debate. We have successfully employed workers for 13 years. The 7 people who have been paid workers for us in that time have worked for an average of 6 years each – a good average for an organisation that according to the Network Planning Group is not considered ‘robust’ enough. The argument that UKAN could not manage this work ignores our potential for growth, and is a convenient fiction for vested interests.


We believe that there is an urgent need to consult with the wider movement about these matters. To make such decisions for people, and to assume that people want an organisation which will be run on their behalf by a large charity, is to return to the paternalism of the mid 1980s, which our movement was formed to combat.


Terry Simpson, Chair of UKAN, on behalf of UKAN trustees

Service User Movement

It would seem to be a complete fallacy stating that there is a Service User Movement in this country…

The Government, NHS and Mental Health Charities are surely over the moon that it does not exist. Due to their constant buffering and manipulation, as we can’t possibly have the Lunatics taking over the Asylum now can we!!!


The struggle we find ourselves in is ridiculous. Up against bureaucracy the whole time. To be paid our travelling expenses is like trying to extract blood from a stone. We are hardly welcomed when we do attend. We have to write separate letters to ask if we may please have a free place at a conference…we wouldn’t be asking for a free place if we could afford to come! And it is humiliating to feel we are begging which puts so many Service Users off that they don’t participate at all…. Our ideas are not minuted but within about 6 months our ideas are suddenly part of the new structure and probably bringing in some form of new funding as pamphlets are being written and papers produced on the very subject matter that we were ignored over when we first brought it to the table…. Where are the copy write boys when you need them…


Where is the transparency of these groups, when we ask to see the books to find out where all the funding has gone everyone passes the buck…”past history” or “water under the bridge” “lets move on don’t jeopardize what we have”….there, there go away and don’t ask embarrassing questions…we love asking embarrassing questions of everyone… especially the Government as they seem to forget they work for us…When funding has been received by a group, books should be kept and columns filled in so everything is above board and everyone can see what and where the money was spent…it’s called transparency.


We are told we cannot attend certain meetings unless we represent a group (most of us are individuals speaking of our own experience now you want us to be at the table on behalf of everyone else who does not or cannot engage) we do not trust these big Charities who are sitting at table’s supposedly there representing little old us, as they are not asking us what we want so why do they assume they know? They should realize that many Service Users do not engage because they are treated badly, made to feel stupid, ignored, condescended to, that is why faces come and go… we get fed up trying to be heard…and in the end we walk away…just imagine if all of us got together and started our own movement we would be a force to be reckoned with…. we can’t do that as we would not want to become a Charity we would not want to be dictated to…we are not offered funding without strings, so we would have to fund ourselves oh surely that won’t work because Service Users haven’t got any money…not to mention the in house fighting and bitching and jealousy which makes it hard for anyone to trust each other then we get down to the paranoia (it ain’t paranoia if it’s true) and guess what we all disengage cos we’ve had enough…..We should not listen to the falsehoods and rubbish passed around especially when we do not know it’s true origins!!!!!


We need to come together and work for the common good of us all.


The Powers that Be sit at tables coming up with ridiculous ideas on our behalf. Holding rallies in buildings where no one can see or hear us. We end up handing out leaflets to ourselves and not the Public we don’t need to be converted we already know the figures and the problems, it’s the Public that need to be converted…. The Public need to be given the facts on Mental Health and violence and not brainwashed by the disgusting coverage of the Media Hype that Mad is Bad and dangerous…we must not allow ourselves to be depicted in this way…


We must complain complain complain


Yet we are scared to speak up in case our services (if we are lucky enough to have any) are withdrawn.

We find it hard to stand up for ourselves, due to a minority of less than helpful professionals that we have all come across at sometime during this Mental Health Journey…Will our Doctor really report my fears of side-effects to the MHRA is it in my head or our these tablets making me feel worse?????


We want a quiet life; it is hard to fight for our Rights, when there is no fight left in us due to our diagnosis or the dummying down of the drugs we are too often prescribed.

We need to be part of the training of all the professionals working in the mental health field from psychiatrists, nurses, social workers, community psychiatric nurses and support workers…. all the way through to the Cleaners on wards who usually have more contact with us “the patients” than those paid to look after us, and lastly but especially important the Local Police….


The Police are often the first port of call for many experiencing a crisis which is a terrifying experience when you are desperate and in need. You do not expect to be put in a police car and taken to a police cell…sadly this is what happens to many of us including children…Not the best way to first access mental health services. Sadly the 136 section figures for England and Wales are extremely hard to get hold of, so we do not know how many unnecessary incarcerations are happening and how many people including children are dying in custody, apparently these figures are kept by the Home Office.


Unless we are truly integrated into the professionals, very existence

as part of normal life we will always have a situation of them

and us, causing the all too familiar faces of stigma and discrimination

from the very people who should know better.


Where are the true crisis centres (retreats) where we can go to recover quietly and in a caring environment where we are allowed to just be…When in a state most of us just want a warm bed, something hot to eat and drink…and lots of sleep in a safe and quiet environment (knowing there is someone there if we need them) This structure is fairly simple and wouldn’t cost a fortune but maybe that’s the problem it is just that, too simple…for those who love red tape and a manager for this and a manager for that and they must have a hygiene certificate, health and safety, and must be trained in IT skills etc.


Here’s a novel idea let’s get service users to run the retreats incorporating first hand knowledge and experience, empathy and I would imagine bushels of respect and kindness…

Wow that is radical!!!!!