Recent emails in support of the blog

“Hello,

I still haven’t received a satisfactory response, or in fact any response to my email of 21 July 2014, although I have (somewhat ironically) been updated generically via South London Involvement Forum.

I now have a couple of supplementary questions:

Why, as appears to be the case, are SLaM pushing to close down a service user resource rather than supporting them to find alternative funding?

What has become of Public and Patient Involvement within SLaM since the end of TWIG ops, TWIG strategic and PEG which in October 2013 were dissolved to make way for a ‘newer more effective group’ which would, we were told, be a ‘ new beginning would start the new process of bridging the bottom to the top (sic)’

I ask these as a former member of both TWIG ops and TWIG strategic and as a current member of SLaM”

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“If you are not happy with D’s performance running the blog then you will need to review her and dismiss her.  If you are ending the project anyway (due to this big review) you would make D redundant, and then simply not rehire her.  However…

If D has done a good job you’ll get trouble from your reps.  Obviously I haven’t seen the whole story, but if the blog is as good as it appears to be then that would suggest D has done a good job.  Sacking good staff is usually a bad plan.”

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“Dear Colleagues,

I emphasise I write today in a personal capacity, not on behalf of the organisations I’m currently or previously employed by.

The news earlier this year that the blog had to close was a surprise to me to say the least, as if anything, I would have expected a maintenance, if not raise in official Trust support.

Having worked directly in service user involvement with organisations based in Southwark, and previously a ‘member’ of SLaM’s Trust-wise Personalisation steering group, and a member of the former Southwark LINk mental health sub-group, the blog was a vital source of both information – often in a format I could disseminate to e.g. self-advocacy skills training course trainees, and news available to an audience I knew that was interested in viewing it, diverse, and unique in the extent of reach achievable.

I still subscribe to the e-bulletins, and I agree with other views that not to have the blog resource is bad enough, but not to have an archive copy would be a severe loss to both the mental health service user/survivor civil rights movement and national archive, and the Trusts own record of activity, and indeed achievement in many areas, in my view.

For individuals, their stories, peaks and troughs often depicted in news of new ventures, gains celebrated, calls for participation – Trust employees and public, will again be unjustly and adversely affected if the blog is lost, and not accessible. Is the Trust offering to resource transition?

I’ve viewed, or been involved in NHS initiatives, including I believe at SLaM, that always appeared to me to be heading for a false economy, in financial and with regard to the human cost.

I therefore personally urge you to consider whether or not the intended ending of this well-respected service is in the best interests of the people the Trust exists to serve across its extensive domains; and, if you can really summon up as much strength of feeling as the numerous people have expressed toward keeping the blog, in going about the Trust’s business completing its shut-down with the associated risk of making it inaccessible.”

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“I wrote (to one of the Comms team, CCing the CEO) a few weeks ago expressing my concern about the ceasing of funding for the SLAM TWIGOps social media, and in particular, its blog.  I was really disappointed that there was no response to me from SLAM, let alone acknowledgement how vitally important SLAMTWIGOps has been in my health, given that all SLAM treatments have done for me is to undermine my condition, with the SLAM TWIGOps being the only ‘open door’ that allowed me to discover third sector opportunities which have at least marginally stabilised my health.

The SLAM TWIGOps social media was entirely consistent with SLAM’s claim of approaches to empower patients and to draw on peer support, and with it costing so very little it is bizarre that SLAM have taken such a non-cost effective, and non-strategic approach, in eliminating this valuable resource.

I have now heard that SLAM has put pressure on the SLAM TWIGOps ‘archive’ to be deleted/the site removed.  This is entirely inappropriate.  Whilst it will be *nothing* compared to its ‘live’ version, the archive will nevertheless still prove invaluable information, directing patients/carers/those alienated from services to information sources which may still be operating.

This whole situation is reflecting very badly on both SLAM’s management and communications activities.”

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“I’m going to say this once, and once only.  Cover-ups solve nothing.
The reason why I am saying this is because you want to destroy the much-loved SLAM TWIG Ops blog.  You want to disassociate SLAM with it, by either having it moved or destroyed.

I can only assume you are panicking about Govt funding, and have gone too far.

PPI is part of Recovery, and Service Users are allowed an opinion ( by law ).  As such to destroy a record of those real opinions is clearly VERY dodgy.  It doesn’t matter if they approve or oppose Govt decisions; they are allowed to have this view ( as voters ).  Funding is different, fair enough; as that is the gagging bill; but even so.  Denying Service Users a voice on Welfare Benefits Issues ( which is political, obviously ) is clearly not going to help anyone recover.
Leave them alone, or I’ll raise the issue with Croydon CCG.  I do not like how you are working at present I have to say.  Destroying the evidence is EXTREMELY bad practice.  I understand The Law has been changed re funding ( in the year leading up to a General Election ), but even so.  In normal times you are allowed to collect data and pass it to both commissioners & Ministers ( gentle Lobbying ).  And after Election 2015 you will be allowed to fund it again, so will need the historical record so you can compare & contrast over time.  It’s just in the current year that things have got a bit weird.

Steve understands this, so I suggest you learn from him on this one.   As a Comms manager I’m surprised that you’d make this mistake, but there you go.”
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“For me, the TWIG Ops (along with Sue’s Involvement Register) are at the heart of SLaM service user involvement, and these two places are always my first port of call.

I hope you will be able to find some money to continue facilitating involvement work in South London – regardless of whether it is under the SLaM badge or not.

There definitely needs to be a hub through which involvement opportunities can be advertised, since there is too much of a need for involvement work.

Many of my colleagues would agree with me here. This is a really big loss.”

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“I have read your recent comments and the notes, thank you.

I would say this whole issue is about ‘control’ rather than ‘funding’.
They must have found their old copy of ‘1984’  to read again.. join the Inner Party, or else the Prols!
Their printed magazine  does not even mention the names of the editorial staff…unwelcoming and impersonal.

You clearly do have a good fanbase and could maybe continue posting your comments and links to all the interesting events that we like to read about, without being officially ‘from SLaM’… Maud’s Special Links Associates, maybe?

I suppose that would have to be on a voluntary spare-time basis; how much would the overheads be, for Matthew reporting from events as he usually does so well, for example?

Or raising sponsorship from a walk around Ruskin Park?

Otherwise I would still receive official emails from SLaM, being on their database, and it would be interesting to compare their editorial content and entertainment value!”
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“I want to register the disappointment of myself, colleagues and members at [x] on hear that Slamtwig will no longer be funded.  I get lots of excellent information about what is happening through the network,  which I print and present to our members in our information exchange meetings.  I get to read and hear a diversity of opinions from people using services that are valued by us and add to the co-production of activities designed for delivery here.  It will be genuinely missed.”

“I’ve read that funding of the SLaM Involvement Forums’ online presence is due to stop in the near future.

I use your social media in several ways;

• as a member of SLaM and a former service user I continue to value my recovery and now I am no longer under services a large part of this is online. Whilst it is true that there is a vast amount of online information, blogs and social media around mental health I like things to be from a trusted and reliable source like SLaM (oh the joys of having paranoia in your diagnosisJ)
• In my work role I send  in details of events and activities that are coming up which I know reach people we would otherwise not come into contact with
• I hear about events which I may not be aware of and pass them onto our service users and disseminate them across my networks. I’m sure I’m not alone in doing this and this must extend the reach of the SLaM social media platforms far beyond the number of subscribers and visits.

People with a MH diagnosis are far less likely to use computers for a variety of reasons and I feel this decision moves them further from integration into the online community

I would be interested to know why, in an age where the power and importance of social media is growing by the day, funding has been taken from this resource.“

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“I am writing to register my disappointment that the social media project SLAM TWIG Operations has had their funding cut.

In times where mental health services users’ benefits and services are being taken away, SLAM TWIGS was a beacon of light that gave hope through sharing opportunities and providing connections in a disconnecting world.

I, as a SLAM service user, found it invaluable in my recovery to move forward and not get lost in recovery’s no man land, where you pushed out of services with no signposts to help you on your way. SLAM TWIG provided some of those signposts.

Please reconsider your action.”

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“I am a SLaM service user and member of the Involvement Register. I am writing to beg you to reconsider your decision to cut the funding from the service user blog. This is an invaluable form of social inclusion and involvement that myself and others benefit from everyday. If I am unable to get out of the house due to worsening of my condition, the blog keeps me informed and makes me feel connected to the community. When I am able to get involved, it offers me news and opportunities for bits of work, and also info about local groups, charities and advice. Mainly it is run by service users for service users so our views are represented and taken seriously.

I can’t believe the small amount it takes to run these services is deemed to be unnecessary. It will take away a valuable service and take away yet another small thing that improves the quality of my life.

I hope you take this view into account”

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There were also some comments in reply to our posts, including this:

“Very sorry to see you go. The blog has been an independent, invaluable source of information to SUs (and some employees!) Many staff continue to strive to provide a caring, collaborative service but SLaM management appear to have forgotten their key remit i.e. supporting and enabling service users. I should know. I’ve been a patient for 11 years and SLaM is a shadow of its former self particularly in taking a holistic approach to the well being of SUs. Benefit advisors cut from CMHTs and withdrawal of funding for this independent forum (£6000 per annum) being cases in point. I couldn’t give a flying fiddle for ‘Bedlam’ and TV awards. Shame the same can not be said for Board and their henchmen (sic). An offer of improving Trust-led (i.e Trust manipulated) SU initiatives is merely short change.”

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