Just a reminder that the TWIG Ops blog, Facebook and Twitter accounts are closing at the end of the month. You will still be able to see the blog, but it won’t be updated from this date.
From 3/11 you will be able to find out what’s happening in mental health across Lambeth, Southwark, Lewisham and Croydon through a new website portal: www.slam.nhs.uk/getinvolved.
Please follow them and send them your news and views to share with others. Why not follow South London and Maudsley on Facebook? Visit https://www.facebook.com/slamnhs.
You can also follow SLaM on Twitter @MaudsleyNHS and Google Circles https://plus.google.com/+MaudsleyNHS’
While I thank you all very much, service users, staff and the third sector, for your emails to SLaM, it seems pretty clear that the Trust has no intention of listening to you.
I’m finding it too stressful continuing and feeling like a sitting duck, so we’re closing the blog now, so this will be the last post. This means that I no longer have to deal with the Trust re the blog, rather than continuing until the 8th September, as previously notified.
I had previously asked Bridget and Matthew if they wanted to say anything to you, so if they do, I will post this by 8th September. If they do I will then repost this so that it remains at the top.
To continue the blog we need £5000 each year, from an organisation that can pay me PAYE. To continue to run our other Social Media we need £4000, subject to the same conditions. We very much hope that funding will be offered in the future, as we all passionately believe in the work that we do :-).
If you have any offers to make, or if you wish to explore this further, please email me at firstname.lastname@example.org.
You can see the history of this via the following links:
I have been given a very small amount of funding until the end of October and will be using this time / £ to reply to people who send us things to post by emailing them this post; advising them that for now we are closed, so to take us off their mailing lists; and advising them that if they subscribe to the blog then they will hear if it is subsequently reactivated, at which point we can take postings again.
Here are some of the emails we’ve been copied into recently, asking for reconsideration about the future of the blog:
It seems that most people who have written in since we asked last month have not / are not being responded to; however, in one that was responded to, The Trust specifically mentioned that they would be working with Bridget and Matthew, who run our other social media, so we can only assume from this that they do not intend to be working with me / the blog:
“We are looking at new plans for communicating the work of those on the involvement register, and how we can support service users more widely, to forge their own networks and engage with staff SLaM. Social media is as you say a very important tool. I am working with those who run the Twitter site and the Facebook page for TWIG Ops to look at how best we can take things forward.”
This is despite them earlier giving me this assurance: “Hi D. Matthew and Bridget both contacted me after our last meeting to say that they would be happy to help out between now and September if needed. More than happy to seek your views too if you would like to offer them.”
Last year we were told that our social media was specifically excluded from the Review of Involvement, but now this review is being quoted by the Trust, where there is no reference to us:
“These developments are part of a wider review of the involvement register. The Board paper (reviewed and approved by the Board on 27 May) is here if you need more information: http://www.slam.nhs.uk/media/266270/May%202014.pdf.”
Next they told us to change our blog address, which they knew was impossible:
“If you have decided to keep the site inactive (rather than shutting it down) then you will need to make sure you use the time to remove all associations to (and mentions of) South London and Maudsley / SLaM / SLaMTWIGOPs from the blog. This includes the domain name for the blog which reads as: slamtwigops”
and then quickly backtracked:
“To explain, there is no pressure for the TWIGOPs blog site to be removed or deleted. Those running the blog may decide to continue it if they choose to. My request was that the blog site (which is now named ‘South London Involvement Forum’) change its WordPress domain address from the old SLaM one, to match its new name, given that SLaM will not be paying for the blog to run.
Thank you again for making this such a wonderful resource for the last 3 and a half years! It’s been a complete joy to be working with you all, spreading the word 🙂
With very best wishes,
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”
“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.”
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.”
“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.”
“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.”
“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.”
“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!”
“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.“
“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.”
“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”
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.”
We are deeply concerned by recent cuts to NHS mental health service providers which exacerbate the problems of an already extremely under-resourced sector.
These cuts are the most recent in a long list of events that display the Government’s lack of support for the sector, says Isabella Goldie, our Director of Development and Delivery: “Despite mental health problems being 23% of the burden of illness in England, funding (currently sitting at 13%) is becoming even more disproportionate.
“Whilst we absolutely welcome the government’s commitment to parity of esteem for mental health and a move to a focus on outcomes, recent figures show immediate and drastic action is needed”.
Figures from a recent HSJ analysis of all 57 Trusts show one in five experienced cuts of 5-9%, leading to a dramatic reduction in beds and staff available to people who require acute mental health support.
“We can see from the steep rise in out-of-area placements that those who need highly specialised care and support are travelling long distances for services.
“It is unacceptable that people, at their most vulnerable, afraid and distressed, are being placed in unfamiliar areas, and shows that mental health services are reaching a crisis point.
“Given that 1 in 4 people (and growing) will experience mental health problems this is an issue that affects us all.”
We advocate for more work to be done in prevention across the course of a life and call for further investment in evidence-based preventative approaches such as parenting support.
“Any compassionate society needs to ensure that our public services are available and fit for purpose when people are at their most vulnerable,” says Isabella.
“For mental health services this means ensuring services are measured and funded based on outcomes that drive real improvements to the lives of people with mental health problems.”
Our joint Mental Health Policy Group has joined a wide range of other professional bodies, service user and carer groups and academics to express concern about what this means for already disproportionately funded mental services and the aim of the government to create parity of esteem.
Further to your coverage of the sad and wasteful death of David Clapson (‘No one should die penniless and alone’, G2, 4 August), today (9 August) marks the anniversary of the discovery of the emaciated body of Mark Wood, a vulnerable sufferer from severe mental health problems, in David Cameron’s Oxfordshire constituency. Mr Wood had been erroneously and incompetently declared fit for work by Atos (on behalf of the DWP) and the consequent cutting of benefits was a clear “accelerating factor” in his death by starvation. The architects of deaths like these remain in charge of the DWP. There have of course been other well-attested deaths-by-DWP and there will be more (especially among the vulnerable disabled), as current reforms roll out their panoply of delays, despair and effective victimisation across the country. The real human costs of sick government must never be forgotten.
• David Clapson’s death is a sad reflection on the impact of government policies. I was fortunate enough to be able to work from the age of 15 to 70, paying all due taxes. Should we really care if a few people manipulate the system, if it means that no one is unfairly penalised and slips below the safety net necessary to provide a reasonable standard of living? I am not religious, but I do think that this heartless government should consider “there, but for the grace of God, go I”.
Batley, West Yorkshire
• The harrowing comments on benefit sanctions (G2, 6 August) didn’t discuss the political basis for these punitive measures. People mostly vote on a tribal basis, for “our sort of people”. When people become afraid of falling into poverty they take comfort in the hope that it only happens to the “other sort of people” and vote Conservative as an act of faith. This is the same mechanism that unites a country under threat of war and persuades dirt-poor Americans to oppose Obamacare rather than admit to themselves that they might one day need it.
Driffield, East Yorkshire
• Shame on the Guardian for describing out-of-work benefit recipients as “the idle poor” (Report, 5 August). On the basis of what evidence do you write them off as idle? Are those caring for children or infirm relatives, volunteering in the community, actively seeking work or simply working hard just to get by on a low income idle? Language matters and it is the use of othering language such as this by the media and politicians that has contributed to the “draining away of public support” for social security.
Labour, House of Lords