Survivors History archive of Archive of Our Futures Conference documents

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Possibly the most controversial conference in the history of the survivor movement in England.

This archive will aim to preserve the documents, the memories, the consequences, and the reflections.


Our Future Conference - 8 March 2006

Jurys Inn, 245 Broad Street, Birmingham B1 2HQ

Please bring to the conference:

Contact details or your own and other service user groups in your area Any documents, policies, guidance you have developed to share with other service user groups

This information will be used to form a national database of service user information

THE MORNING

9.00 Registration and refreshments

10.00 Chair a.m. - Anne Beales, Director of Service User Involvement (Together)


Introduction
Poetry readings
Purpose
Group agreements

11.00 Tina Coldham, National Development Consultant (HASCAS)

Report from Health and Social Care Advisory Service (HASCAS)

11.30 Break

12.00 Workshops (people to sign up at registration)

Identify leadership training needs for service users (training)
Identify what will assist the service user movement to be effective (capacity building for service user groups)
Identify the priorities necessary to improve our experience of using mental health services or support (identifying priorities to improve our experience of using mental health services)
Review the principles and proposals of how we should organise nationally (facilitating active links between service user groups and individuals and diagram of structure)

1.00 Lunch

PTO

THE AFTERNOON

2.00 Chair p.m. David Crepaz-Keay, Senior Policy Advisor, Patient and Public Involvement (Mental Health Foundation)

Warm up
Feedback from groups

Speaker - Emily Brown Deputy Director Service User Involvement (Together)

A Way Forward


3.00 Break

3.30 Dr Jan Wallcraft - Operational Manager (SURGE)

Chandra Fowler - Head of Policy Research and Participation (Revolving Doors)

Questions and Answers
Vote on Principles and Proposals

4.00 Summary of the day

4.30 Close


REVIEW THE PRINCIPLES AND PROPOSALS OF HOW WE SHOULD ORGANISE NATIONALLY, BETWEEN SERVICE USER GROUPS AND INDIVIDUALST

Workshop led by Sarah Yiannoullou and Tara St. John

Comments and Questions

  • The 'On our own terms' should have been sent out prior to the conference
  • How does it fit in with what UKAN are doing? (UFED - need back up)?
  • Agreed accountability - elected body
  • Independence essential
  • Could follow the federation model
  • User controlled organisation
  • Learn from experience
  • Will it function as a 'clearing house'
  • Need a very clear mission statement - vision statement
  • Important to include people who choose not to use services
  • Vital that the network is user led and run - own it and modify it
  • Strengthen communication
  • Democratic, should not allow the initial structure to be permanent, should be able to modify
  • Need to aim for meaningful and lasting change
  • National charities should be brought in
  • Clarity of purpose
  • Should have a campaigning function
  • Should seek cultural change
  • What will 'national' mean
  • How will it be hosted
  • Networking and lobbying functions may need to be kept separate
  • It the network works - everything can start from here
  • Network should communicate with charities rather than involve them
  • Add value groups that exist
  • Involvement of generic disability groups, may be whole areas not covered due to funding issues
  • Would need an independently hosted website and newsletter
  • OOOT document should be written in more accessible language
  • The network should accommodate all organic groups
  • Should link into educational establishments - use research to push for change - via academic credibility
  • Hosted by a university, like CEIMH
  • It should adopt the well being agenda
  • It should increase capacity at the grass roots level
  • Potential for user involvement funding
  • We all want the same thing
  • We should make a decision today on having a network and the principles
  • Potential to communicate on a national level with NHS, social care and housing staff
  • Link with PPI forums
  • The initial proposed structure should be 'as we direct' and include a statement saying this in the first paragraph of OOOT
  • Hand over to elected control asap - or at least within the first three years
  • The agency initially running the network to facilitate as we direct
  • If it works use it
  • If it needs help - help it
  • If it needs replacing - replace it

    There were 37 delegates who attended this workshop


    My input at national Service User Conference 'Doing it for ourselves'

    Jan Wallcraft's Vision

    David introduced the On Our Own Terms work as 'Jan's vision'. I would not want to claim this was my vision, as it was based on extensive consultation with national and local mental health service user groups across England, and the result is, I hope, a collective shared vision of what service users involved in groups want to see in the future. Probably up to 10,000 service users belong to the various groups and networks that we talked to - the research included the Manic Depression Fellowship, Phobics Society, No Panic, Hearing Voices Network, UK Advocacy Network, Mindlink, Rethink's Voices network, a large number of local BME groups, and a range of other local service user groups.

    Based on the results of the On Our Own Terms report, I brought together representatives of the participating groups and other groups. We set up the Our Own Terms Steering Group to generate a funding bid for resources to put into practice one of the key visions of the service user movement - a strong and visible national network (or clearing-house) of groups and networks. This process has taken some time, perhaps too long for people's patience. At the outset it was funded by the Sainsbury Centre. It has now been taken on by the Mental Health Foundation. This conference was part of that process.

    An earlier speaker, Emily, described clearly and accurately, the type of network which the On Our Own Terms Steering Group envisaged - a network which does not take over from existing networks, but enhances their work by sharing information across all groups and networks, and helps to unite the voices of service users so that policy makers and the public can no longer ignore us.

    I understand the frustration of the On Our Own Terms Steering Group members who attended this conference, who have spent a lot of time drafting and consulting on the bid to make the new network a reality, only to see it apparently put back yet again for further consultation at this event in Birmingham. However, the process took so long that some of the groups who were initially involved had dropped out, and others were unaware the process was happening. So it seems to me it is a good thing to widen out the numbers of service users involved in the work that was set off by the On Our Own Terms report, and bring you up to date with the work the Steering Group has done.

    Some steering group members had said to me a while ago that they wanted to see the On Our Own Terms work reaching beyond the traditional user/survivor movement, which they see as mainly populated by people who use secondary services. It needs to take in as well the large networks of people who use primary care or who don't get much of a service at all. This includes young people with mental health problems, people from BME communities, and those diagnosed with panic disorders, obsessions/compulsions, depression, borderline personality disorder, self harm and eating disorders. People in these groups may be suffering great distress and/or disablement, but not finding any suitable services. The pattern of mental health service delivery is changing and the new proposed network has to take this into account, if we are to succeed in giving all mental health service users and potential users a voice.

    I do have a vision, and that vision is that following this conference a network to link together existing service user groups, networks and individuals is formed, which can unite the wider service user movement I described above. Such a network will be a powerful and unstoppable force for change in our country. For the moment, as the network does not have a name, I will call it 'On Our Own Terms'.

    The 'On Our Own Terms' network could raise national debates that currently divide mental health service users, such as the place of medication and whether or not service user groups should accept money from drug companies. The On Our Own Terms report showed that there was a range of views on this issue from, on the one hand, 'yes, why should we not take money, the drug companies have made a packet out of us, they should give us something back', to 'over my dead body - the drug companies have exploited us and taking their money means selling our souls '. Many have opinions between these two opposites, arguing that it depends on how much the group needs the money and on what terms and conditions the money is offered. An honest and open national, even international, debate among service users could bring out the range of different views and (or am I being načve?) encourage people to respect each other's choices instead of fighting amongst ourselves.

    Also I envisage that we could debate mental health legislation, another issue which raises deep controversy among service users and between service users and groups of professionals. Whatever the status of the proposed Mental Health Bill, which seems to have gone rather quiet, there is a need to discuss what, if any, legislation would be useful in the mental health field, and service users should be LEADING that debate, as it is our rights and liberty that is at stake.

    I have a vision that a properly resourced and supported network of survivors could take on stigma and transform public perceptions of mental health in 6 months. We already have people with the ability to change hearts and minds. Just look at some of the people who spoke at this event for example. With a credible organisation the service user movement could demand that we, not Marjorie Wallace and SANE, are the media consultants for TV programmes and soap series, and in the national press. I've seen Marjorie Wallace erroneously described as 'the voice of the mentally ill' - An On Our Own Terms network could prove that she is not.

    My vision is that our network could link up with the work that NIMHE are doing to involve service users, and also with the work that national voluntary sector organisations, e.g. Mind, Rethink, Together, and Mental Health Media are doing to involve service users. This would ensure the resource that these bodies have to put into user involvement is used to increase the capacity of the service user movement. Traditionally what happens is that each organisation does its own thing, often drawing on a limited pool of service users from unfunded or poorly funded groups, duplicating each other's efforts and exhausting the resources of those groups and individuals. If the national statutory and voluntary sector groups stopped competing and acted together, they could each take an aspect of the work of capacity building and put in resources that would strengthen the independence of the movement.

    While the national mental health organisations try to build their own internal service user networks, valued national networks such as UK Advocacy Network, UK Federation of Smaller Mental Health Agencies, Depression Alliance, MDF (the Bipolar network) etc. are struggling to survive and some may end up going out of business. Other groups, including BME service users, have not yet even been able to create their own national voice.

    I have a vision that we can create our own alternatives, which will in the long run take most of the customers away from traditional mental health services, unless those services change so that they are providing what service users want.

    The Government is interested in the Expert Patient Programme, but this provides only generic 6 week courses, and is currently not shown to be useful for mental health. MDF and Rethink's Voices group have developed and tested self management courses that are specific for people with manic depression or schizophrenia and go on long enough to help people whose mental health problems are long term and fluctuating. A six week programme might be helpful for some, but people who go in and out of crises need longer term support. Financial supporting the effective programmes developed BY service users FOR service users would be a better and more productive way to spend the large amounts of money that go into mental health services.

    One of the most exciting and satisfying projects I was ever involved in was the Mind Millennium Grants programme. Using National Lottery funds, grants of up to £3-4K were given to individual service users, to enable them to turn their dreams into reality, by getting high quality training and support to carry out a project dear to their hearts.

    They were then expected to, and did, give something back to the community. There were survivor-led dance and drama groups, complementary therapy projects, football teams for young mental health system survivors, healing gardens were created, art exhibitions were mounted, furniture renovated in an old people's home, a sunken sculpture was created for people to dive down and visit, websites and info resources were created for people with borderline PD, traumatised ex-service men and people with eating problems. Some of these projects were short-term, others are still growing. All transformed lives.

    If such a programme was made permanent and national, it could revolutionise the way we see mental health services. If they were encouraged to dream and enabled to realise their dreams, many people would no longer need the National Service Framework, and instead would be providing services for others. This is my vision, of a movement as diverse as we are, which can encourage individual creativity and joint action, independent of government or big business, on our own terms!


    Why we have withdrawn from the Network Planning Group

    UKAN trustees' letter to members and friends, 19th July 2006
    Responses from members and friends, 24th July - 3rd October
    Response from Gil Hitchon, Chief Executive Together, 1st August
    UKAN trustees' response to Gil Hitchon, 17th August
    Further response from Gil Hitchon, 13th September

    UKAN trustees' letter to members and friends, 19th July 2006
    Dear UKAN Member Group

    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

    Back to the top

    Responses from members and friends, 24th July - 3rd October The statement also prompted several responses from member groups and individuals who are friends of UKAN. The comments are printed below, edited only where there is repetition, or comments were not relevant to the matter in hand. One contribution, supporting our decision, was by someone who wished to write in confidence. We haven't named groups or individuals since we didn't specifically tell people we would be making these views public.

    1. "I share many of your concerns about how this new network is being developed. There definitely needs to be more consultation with service users and service user organisations. This seems to me to have been largely overlooked so far. I think things are going ahead too quickly and, while the need to obtain funding may explain some of this, I feel there may be other agendas at work here, particularly to try to sew things up in a business like way and move on.

    I am not in favour of a large voluntary organisation hosting the network, and certainly opposed to close links between the network and Together. I think the agendas of voluntary organisations like Together are not always the same as those of the service user movement and there is a danger of their agendas dominating ours, however subtly and however good the intentions are. I do feel voluntary organisations are trying to recolonise service user action and I am not keen on this trend.

    The decision making process you describe sounds quite unsatisfactory. I don't think it is a good idea for one or two workers at MHF or Together to be taking the major decisions in effect. I do not know enough about UKAN's current position to judge whether it would be a good organisation to host the network but there must be a lot of relevant experience within the UKAN that should be acknowledged and properly used. I support your call for a proper consultation period and am happy to argue that case to relevant people."

    2. "We fully support your withdrawal from the NPG."

    3. "Our group wholeheartedly back the withdrawal from the Network Planning Group due to the non user control and voice of the NPG. Like most groups involved with the modernising and improvement of Mental Health Services they are being led by MH professionals and not mental health sufferers and their carers, leading to non responsiveness and lack of improvement within these much needed MH services. By professionals taking such forceful control and lead in the Mental Health Services they are reinforcing the view put on the sufferers that they cannot, are unable to speak for themselves, or represent themselves. Re-inforcing and stigmatising further people who can and are able to speak for themselves. Groups such as the NPG should be open and honest about their functions, roles and representations so people are clear from the onset about their future involvement, commitments and remits. Our group wholeheartedly backs UKAN's stance and their withdrawal from such deceptive groups."

    4. "I fully agree with the points and concerns raised in the letter dated 19th July 2006 by the UKAN Chair."

    5. "I didn't know the background to this but from reading your notice I absolutely agree. I have some knowledge of the Involvement Directorate at Together, and from what I know they have two main aims. 1- to support and influence the level of service user involvement within the workings of the organisation - which is clearly an excellent step forward, and shows that Together are demonstrating a commitment to scrutinising and challenging their own practice. 2- to support service user involvement nationally - again no problems with that in principle, but for me the key element is 'support', not own. From our notice it doesn't sound as if that is the case."

    6. "Thanks for your thoughtful communication about the NPG. You are certainly right to be alarmed at the direction the proposals for a national co-ordinating group are going in. I do wonder, though, if withdrawing from the NPG is the best way to register your disagreement. It looks to me as if having UKAN out of the picture might suit the people who are leading this initiative very well. Would it be more effective to be in there, protesting and making alternative suggestions? That would be my preference, based on the information I have but it is you who would have to do it - not me! Either way, you have my support in refusing to go along with processes and decisions that seem to be being taken in the interests of a few individuals and organisations."

    7. "This is the spirit. Users do not need a National leader or group. They need 21st century methods of representation and their own autonomous hubs which can link quickly to each other.....how this organic anarcho reality evolves will be up to itself, not the matrix architects in London. Don't take my word for it but look how the Community Channel's MFA top down Mad For Arts equation failed - the architects behind that are partly involved in NIMHE and the Charities that want to seize User territory. There is no need for centralised cadres, but there is a need for communication and actions that organise organically to create patient choices locally and which create pressure for Users to get their own deals and packages of care be that what it may from the state. Forget national leaders. Lead yourselves and grow by communication with each other. Localocracy is a comin..and maybe it's the only genuine way.."

    8. "As a former rep with UKAN I agree with your decision to withdraw from the network planning group. It is a really backward step to 'manage' the affairs and decisions of those with experience of mental health problems, with the assumption that they are unable to do this themselves. It smacks of the 'does he take sugar' attitude. UKAN like nearly every organisation has had odd problems but overall has shown competence professionalism and a prudent management of its financial affairs. It has also represented a user voice from a first hand knowledge and experience of services provided for those with mental health problems. It has made people aware of the user voice and perspective and now some 15 years after its formation for UKAN to be told or the implication made that the user voice should be managed by an outside agency is an insult. I feel you made the correct decision in withdrawing from the network planning group and I support your efforts to remain an authoritative and informative independent user voice."

    9. "Thanks for keeping me informed about UKAN's withdrawal from the Network Planning Group. I have to say I share your concerns about the way Together seems to be taking this over, and fully support your decision to withdraw from it. Although not a service user myself, I completely support the idea of a truly user led network, not one subsumed within a voluntary organisation which is not service user led. Anything less would be a retrograde step, losing ground that so many people have fought to achieve over many years, and I agree there needs to be a proper consultation and debate on this. I wish your campaign every success."

    10. "Personally I would agree with your sentiments entirely. I did not attend the conference in March. The feedback I received was that there did not seem to be much consultation - though some of the outcomes which were to be achieved were to be welcomed e.g the sharing of information and knowledge.

    I would certainly back you all the way on this one both from the perspective that a user network should be user led and the issues of ownership, structure and accountability are very important. I would also feel confident that UKAN could do the job."

    11. "The points you raise are worrying. It does seem that through offering to host the group, Together may be using this to pursue its own objectives. I guess that in some ways this may be legitimate if they are contributing significant resources. However, I share your concern that they are not a user led organisation. I think the relationship between the user movement and large charities that provide services can be very difficult. I'm afraid I can't think of a way forward with this, but I hope the group is able to stay focussed on its aims and objectives and ensure there is a positive outcome for both the service user movement and individual service users."

    12. "I think some people are in it to feather their own nest involving only those who help them to do it. So thank God UKAN is making a stand."

    13. "My initial reaction was to suggesy that UKAN take a deep breath, count to a desirable number, and continue working with these organisations. User led advocacy needs a voice in the thick of things rather than a voice crying in the wilderness."

    14. "We fully understand from the written information that UKAN felt it necessary to withdraw from this planning Group and the reasoning that lead to this decision. We do feel as a user-led group great sympathy with tokenism that pervades much of what is known as "User Involvement". However from our discussions we felt that a user voice should be represented within this forum, and that the concerns be addressed to enable the continued involvement and support of UKAN".

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    Response from Gil Hitchon, Chief Executive Together, 1st August
    Dear Terry,

    A copy of your recent letter to UKAN members has been forwarded to me. It contains some comments about Together that I feel I need to respond to, as they seriously misrepresent our position. From the outset, with regard to the potential network of networks, Together has been clear that we simply seek to facilitate its emergence.

    We're a provider organisation and, from my perspective of 30 years working in the mental health field, I've admired the many brave individuals and groups of service users/survivors who have struggled to get their collective perspective heard. In my judgement, the climate has never been more favourable for achieving this - and whatever Together can do to facilitate this, we should do.

    What's in it for us? Well apart from the obvious (that we are all working to improve mental health policy and practice), in Together we firmly believe that we can only do our job effectively as a provider if the perspective of the consumer of the service is what drives its development and delivery. So the stronger the service user perspective is heard, nationally and locally, the better it is for us. What I believe we have to offer is a culture that understands and supports (but does not seek to direct) service user aspirations and, as a relatively large organisation, we have an infrastructure that can help such a network establish itself as an independent entity.

    Your letter suggests that our publicly stated aim of making our own Service User Involvement Directorate self-financing at a future date relates to our interest in the network. An obvious inference to be drawn from your suggestion is that we might be using network funds to underwrite Together's activities. This is untrue and unacceptable and I am seeking your reassurance that this was not what you intended to imply. My Board of Trustees has been keen to ensure that any support we give to establish the network is transparent and accounted for separately from Together's activities - and has formally approved such an arrangement.

    I'm sad that you did not feel the need to share your concerns directly with me before circulating them to your members, but I'm happy that you share the contents of this letter with them so as to redress any false impressions they may have gained from your letter.

    Yours sincerely
    Gil Hitchon
    Chief Executive
    Together

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    UKAN trustees' response to Gil Hitchon, 17th August

    Dear Gil,

    Thank you for your letter, which I think is a welcome contribution to the debate about the Network Planning Group. The fact of your concern, and your Board's concern for transparency and accountability, are extremely encouraging. I think there are some real problems with the Network Planning Group, and its current functioning, and if you could help to resolve these it would be a great help.

    The main problem I can see with the Network Planning Group as it currently functions is that there are no clearly defined terms of reference, and so no proper decision-making process. The notes from meetings do not make clear what are actual decisions, and what is simply the expression of an individual's personal views. This is not a problem in itself since the Group is at an early stage of development, but it becomes a problem when major decisions are actually being taken on behalf of the Group, which will set the course of things for years to come. The impression some people have at the moment is that an agenda was developed within Together some time ago, and this is being pushed through now without any genuine consultation. Simply inviting a range of people to a meeting, which has no clear power to make decisions, does not constitute consultation or involvement.

    A key decision is that Together should be the host organisation for a new network drawing together the many strands of our movement. I think you'll agree this is a major step, and needs careful analysis and consideration. I have been receiving notes from the Network Planning Group and I couldn't remember any reference to this decision. I reread the notes carefully, and found a single sentence from a meeting where only four people had been present, including the Manager of Together's Involvement Directorate, who clearly had a vested interest in the decision. This looks bad not only for the Network Planning Group, but also for Together.

    Another example, the 'hosting' of the new Network, when discussed in general, has always been talked about as a temporary arrangement, with the new organisation becoming independent at the earliest opportunity. I was surprised then to read in a funding application to Comic Relief that the arrangement for Together to 'host' might be permanent. This huge potential shift in policy does not appear in any Network Planning Group notes. Who made this decision? Where is it minuted? Who was consulted?

    In your letter you write that it is 'untrue' and 'unacceptable' to suggest that Together might be 'using network funds to underwrite Together's activities'. What I see is that the post of Manager of Together's Involvement Directorate, an internal post within Together whatever the aspirations towards the wider movement, will under the current plan become the manager of the new network. As major funding then becomes available for the Network the most likely scenario is that this post will be funded out of grant money to develop the Network, i.e. intended for the development of our movement. So 'network funds' will actually be used fund a post currently funded by Together. I think there is a genuine issue of concern here.

    I have 12 responses to the letter I sent out so far, and each has been supportive of our position on this, and expressed concerns about what is currently happening.

    It may well be that the new initiative is the best way forward, and that it has the support of a majority in our movement. Our point is that we will only know this if people are given the facts and allowed to comment on them. We ask for a proper consultation on these current developments, by an experienced party acceptable to the Network Planning Group and to those of us outside it concerned about what is going on. If Together could fund this so much the better, but we would ask at least for your support, and for the support of your Board for the idea. If after a genuine consultation people support the idea of a new network hosted by Together, then UKAN would be happy to accept that and support the new initiative.

    We will certainly make the contents of your letter available to our member groups so that people will see your perspective. I hope I've managed to convey ours, and that you will use any power you have to help to resolve these issues.

    Yours sincerely

    Terry Simpson
    Chair
    UKAN

    Back to the top

    Further response from Gil Hitchon, 13th September

    Dear Terry

    Thanks for your letter dated 17th August. Sorry for the delay in responding but an office move and our national stakeholder conference have made large demands on my time over recent weeks.

    I'm sorry that you feel there are problems with the Network Planning Group but I don't see that is my place to seek to influence its operation. Together is not claiming to be a service user-led organisation and therefore it would feel completely inappropriate for me to try to influence the Network Planning Group.

    What we are contributing is expertise from within our own Service User Involvement Directorate and facilities to help the Group progress its work. I've no desire for Together to do more than that, but I do have a desire to see an effective national network of service user groups established and thriving. Terms of reference and how the Group operates, however, is for it and the service user networks to determine.

    You are suggesting that we might be looking to achieve a permanent 'hosting' arrangement for Together - this is not our thinking. What I hope we can do is support the development of the National Network to the point where it decides for itself what form of constitution (if any) it wants for itself and is then established enough (governance-wise and financially) to stand alone. On this basis, we have clearly accepted that we have a role to play for a limited period of time in facilitating the establishment of the Network.

    You are misinformed in your belief that our 'current Manager of Together's Involvement Directorate' (by which I assume you mean Anne Beales, who is a Director and a member of the Corporate Management Team) will be running the service. The co-ordinator of the Network, as I understand it, is someone who will be recruited through open advertisement once funding has been established. What we have offered is for Anne to supervise that person - and her time for doing this will be charged to the Network at cost. That's the only income we might derive from the Network. But if the Network wants someone else to do the supervision, we have no problem with that. So let me re-iterate that the interpretation you are putting on our motivation is both untrue and inaccurate.

    You are suggesting that I get involved in sounding out the perspectives of the service user networks or funding such a piece of work. I have no interest or legitimacy in doing that. Such an activity is for user networks themselves to undertake and is what I assume will happen if funding is achieved.

    I still feel there is a brief window of opportunity for user groups to form a National Network and have a national impact. If it's missed, I don't see it returning. Because of this, I would encourage UKAN and other groups still not participating in the work of the Network Planning Group, to join in and make your voices heard through participation, rather than complaining from the outside.

    Yours sincerely

    Gil Hitchon
    Chief Executive
    Together


    Tuesday, December 19, 2006

    The Charitocracy And Pigma Dreams In the UK

    National Network of Networks Pig

    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 .



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