Suspension of the blog

Dear all,

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 d.rosieruk@gmail.com.

You can see the history of this via the following links:

https://slamtwigops.wordpress.com/2014/07/07/funding-will-cease-for-our-social-media-in-less-than-3-months/

https://slamtwigops.wordpress.com/2014/07/25/update-re-the-future-of-our-social-media/

https://slamtwigops.wordpress.com/2014/08/08/future-of-our-social-media-august-update/

https://slamtwigops.wordpress.com/2014/08/14/bullying-from-slam-to-shut-the-blog-rather-than-make-it-inactive/

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:

https://slamtwigops.wordpress.com/2014/08/18/recent-emails-in-support-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.

If we are able to accept posts in the future you will need to send them to me at d.rosieruk@gmail.com and not to twigops@slam.nhs.uk.

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,

D

Blog administrator

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Bullying from SLaM to shut the blog rather than make it inactive

Dear all,

Earlier today we notified SLaM that our last post would be on 8th September, after which the blog would be dormant until or unless we secured future funding.

SLaM responded by telling us that we had to change the blog domain address (which they knew was impossible), or to shut down the site. Leaving it dormant was not an option.

After we challenged the legality of their edict, they backtracked.

Here’s today’s emails: Corres with SLaM Comms 14th August

It’s so sad that they are trying to make us disappear, so that the blog can’t even be a historical resource.

If you’re cross or sad about this, please email the Head of Comms: Sarah.Crack@slam.nhs.uk and / or the Chief Exec: matthew.patrick@slam.nhs.uk, copied to me at d.rosieruk@gmail.com .

Best wishes,

D

Blog Administrator


Future of our social media: August update

Dear all,

Last month we told you about SLaM’s plan’s to pull funding from our social media on 30th September here: https://slamtwigops.wordpress.com/2014/07/07/funding-will-cease-for-our-social-media-in-less-than-3-months/

Thank you to all of you who wrote in to SLaM, asking for a reconsideration.

Later last month we updated you on the new date of 8th September here: https://slamtwigops.wordpress.com/2014/07/25/update-re-the-future-of-our-social-media/

We were called to a meeting earlier this week, at 2 days notice, which two of our team were able to make. The notes of that meeting are here: Notes of Meeting to discuss SLaM Blog. You’ll note that there was no dialogue: it was simply a meeting for SLaM to tell us of their latest decisions, lead by by the Trust Director for Patient and Public Involvement.

At that meeting, we were told of the latest plan: that there would be a cut of 50% in our funding from 8th September, which would stop altogether on 30th October. In addition we were asked to provide advice to the SLaM Comms team on setting up new, SLaM run platforms, within this new 50% funding level.

SLaM seem to fundamentally not “get” the reasons for the need for an independent service user and carer led voice, or to understand why so many of it’s current and former patients are fearful of engagement with Trust-led initiatives. We have done all we can to explain this, time and time again, and we’re incredibly sorry that we’ve not been heard, on your behalf.

Your social media team have been unable to find a way to continue our services in anything like their current forms until that date, with these cuts, so this is to let you know that the blog will stop taking postings on 8th September. Our Facebook and Twitter presence may continue until the end of October.

On a personal note, may I take this opportunity to say that for me it has been a very great pleasure to have worked with you over the last three and a half years, and to have been part of this growing community which we have helped to link up :-). I am incredibly sorry to see the blog and our other platforms go, and can’t see how new platforms, run by the Trust, can replace them, when so many people are so suspicious of their health provider, based on their own direct experience :-(.

With best wishes,

D

Blog Adminstrator


Update re the future of our social media

Dear Subscribers,

We posted last month that funding would cease for our social media on 30th September: https://slamtwigops.wordpress.com/2014/07/07/funding-will-cease-for-our-social-media-in-less-than-3-months/

One of subscribers wrote in to the Trust as we requested, and Sarah Crack, from SLaM Comms, replied to them, copied to us. In Sarah’s email she said that the funding would now cease on Monday 8th September, almost a month earlier than we were told last month. We’re also concerned that a decision made by the Involvement team is being communicated to a third party, and by another bit of the organisation.

We wrote expressing our concern at this to SLaM on Monday 21st July, and on Thursday 24th July this new date was confirmed by Ray Johannsen-Chapman in the attached letter.

from Ray July 2014

We still can’t understand why they are closing our media before they have replacements in place.

SLaM has contested some of our posts, including us posting articles from the Guardian newspaper. We feel that this is over-cautious. All of us working in the variety of social media try to be very careful what we share with you and it would be good to know how you think we are doing. We don’t seek to take up an adversarial position with the Trust and we believe that everything that we post or send to you via our other social media is in the public interest.

Here are some excerpts from some of the emails we’ve received. It would be great if you could add your voice to them, and / or explore other avenues of funding for us to continue our work.

Best wishes,

D

Blog administrator

.

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 was very disappointed to find out that funding was to cease for the South London Involvement Forum.

I was directed towards the Forum earlier this year. I find their weekly digest full of useful information and details of all sorts of activities around the boroughs.

In particular I find their reports on the Hear Us meetings excellent. There must be an awful lot of effort put into them. I am not always able to attend the entire meeting and need the Forums detailed reports to find out what I missed and to clarify areas I did not understand.

I believe SLaM should be publicising the Forum as a resource rather than removing its funding. I find it far more useful than the displays of leaflets and posters around SLaM properties which can often be out of date.

.

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

.

Quite a shock about the possibility of having the funding discontinued for all of your great reporting online.

I particularly look forward to Matthew’s video analysis, for example.

I really appreciate receiving these regular email news bulletins from you, to inform me and keep me up to date with opportunities in ‘our’ community, and if at all possible would use a modest amount of my income to support you financially in the future to help you continue your good work.

This is a deserving cause alright.

Hoping to hear some better news..

.

I was really upset to see that the well established social media activities relating to TWIG are to cease. I know from the recent SLAM magazine that a larger social media body exists but I do not have a relationship with those postings and feel reluctant to form one.

D Rosier is a trusted, effective service user involvement expert and her judgment regarding the posts on TWIG which balance opportunities in work and education and socially as well as useful information regarding benefit changes and activities that highlight how people with lived experience of mental distress feel about their treatment.


Draft minutes from final TWIG Ops meeting

Dear all,

I received these today and am posting the draft minutes of the final TWIG Ops meeting FYI.

Trust_Wide_Involvement_Operational_October2013 DRAFT

 

 


Letter to TWIG Ops members received 16th May 2014

Dear All TWIG Op members, back in October 2013 I wrote to you inviting you to an event in November about the proposed changes to the Involvement Register and to the Trust wide Involvement group for Operations. As you will remember that TWIG Ops was dissolved following the last meeting in October 2013 and as you know we are about hoping to embark on new involvement and patient experience journey.  I hope that we can continue to work in partnership. I wish you all the best and hope to see you at some stage in the future.

Many thanks

Ray Johannsen-Chapman

Strategic Lead for Patient and Public Involvement

Posted here at Ray’s request


Blog name change!

Dear all,

SLaM TWIG Ops Committee was disbanded in December 2013, and since then we have been chasing SLaM to give us the minutes of the last meeting and a statement regarding it’s closing, to share with you and the TWIG Ops Committee. As soon as we have this we will post it.

SLaM have also announced a review of all of our SLaMTWIGOps media presences which they fund, i.e. the blog, Facebook and Twitter, and this has prompted us to begin another review of these things ourselves.

The first change we have made is a new working title, which we hope more accurately reflects what we do. In due course we will be asking for your ideas on what we should be called :-).

We will keep you in the loop about the discussions we will be having, which will be lead by SLaM’s Head of Communications. At key points in these discussions, we will be asking for your views, and we very much hope you will get involved so that we can continue to do the best possible job for our subscribers and visitors, across all our media platforms.

If you have any thoughts now, we’d be very grateful if you could add them as comments to this post.

The blog is used by many health and third sector organisations, to make contact with service users and carers in South London. Twitter and Facebook have followers and friends across the Country.

Our media platforms belong to you, the people who use them, and we need your input to try to ensure that funding stays in place to provide these forums for everyone who wishes to be involved, and that we can continue to have a degree of independence from the Trust, as the key to our presences is that they are run by service users and carers, for service users and carers.

Best wishes,

Abi, Bridget, D and Matthew

Communications team