The media furore of the last few days

[JustineMumsnet]

Hi all,

Wanted to post about the extraordinary press coverage of the Riven story over the last few days as there's been a bit of speculation about what happened and not all of it accurate.

It's a fact that for the press to get excited about an issue they need a human interest angle (with pictures). Riven's post on Mumsnet was ideal but when it came to engagement with the media, Riven's clear intention throughout was to raise the issue of respite care for all and to shy away from her own story. Of course the press pretty much ignored her because if it hadn't had a dramatic personal angle there would have been no story - it simply wouldn't have made the papers. If Riven hadn't already met David Cameron, it wouldn't have made the front page. It was a perfect storm of a story for a press looking for human interest, evidence of cuts causing hardship and a David Cameron angle to boot.

The extent of our own involvement was to pass on the enormous number of media requests of which, as far as I know, Riven only actually responded to only 2 or 3 and one of those (the Mirror) was because they doorstepped her. I also suggested and drafted her statement post the Mirror piece as she was upset the morning after that they'd skewed what she said to turn it into an NHS cuts story. Once it had appeared in the Guardian and the Mirror as front page news it was lifted plus picture by almost every other broadcaster/paper.

The press found out about the story both because there are plenty of journalists who are MNetters and because Twitter and Facebook were alight with it - and as it turned out, the story was exactly what the media was looking for.

For the record we think Riven and those who got behind her to make a noise about carers should feel proud of what they've achieved in the last few days. I've got no doubt that the Government will tread more carefully around provision of care for those with SN than they did before as a direct result of their action. The feedback we've had from the major charities involved is that they've never had so much press interest in the issue and that they are thrilled that it has at last entered the public consciousness. We've also had tonnes of emails from carers thanking Riven/MNetters for raising the issue.

The intention of this post is to give a clearer understanding of how things evolved and were played out. Please feel free to discuss the issues raised here but we will delete posts that pick over Riven's personal situation because we really don't think that's on given the bombardment she's been under the last few days.

Thankyou.

Like most MNers I've been thinking of Riven, and others in similar situations, a lot since this blew up but by the time I got round to posting something, it no longer seemed appropriate.

It's nice to have this opportunity to wish her and her family all the best and to hope that the publicity brings about some real change for disabled people and their carers.

"It seems that without a well known face to relate to people just aren't that interested"

Well I'm motivated to try and challenge that status quo.

What face can I show in a one off "more help required" spotlight ? A spitting, hissing, swearing, old lady in full blown paranoid psychosis. Oh yeah, that'll help. Combined with headlines of "mentally ill man stabs boy to death", I remain, as ever, a bit screwed in terms of getting any public support outside of the umbrella of a focus on ALL carers, because the tendency is to be a bit scared of the mentally ill and that interferes with empathy.

I have an idea that has been whirling around my head for a while ever since I got glued to FlashForward, got a little brainwave and started to think how I and others could show the wildly differing realities of the people we care for and the core issues that bind us together as a whole.

A video mosaic, possible exploiting something like Prezi, where people can catch a glimpse into both the desperation and the joy of caring, the stuggles and the value of those who have additional challeneges, for all types of people, in all types of situation.

Making the carers and the people cared for 3 dimensional. Because if only the worst aspects are constantly highlighted when asking for consideration and funding, then people turn their faces away to avoid feeling secondhand pain with a sense of defeatism from the onset, because the problem looks so huge and so depressing that it is insurmountable.

As it grows it can be constantly refered to in any press release, it can be publicized on the sidebars of blogs and noted in any future articles that touch upon the subject. Ensuring that the diversity is kept at the forefront and interest in one sub group can qucikly be exploited to draw attention to the whole.

Again just an idea, that may be full of holes. But maybe in ripping that idea to bits a better idea can emerge.

I think that sounds like a lovely idea actually.

AS i was reading your posts i got flashes of DS both good and bad. the contrast is extreme, so yes i think it could work to show that it is neither all one way nor the other

I knew that Riven would be all over the news, as soon as I got to reading the LONG thread early afternoon (and frantically hiding every other thread about it because I didn't really want to be involved and supersaturated). I told DH, "you will hear about almost nothing else on the news tomorrow". The media in this country is VERY easy to manipulate, and a lot of MNers were determined to manipulate it.

Yes, very naive of many of you to think it wouldn't be a frenzy. Very

I don't know what critical things in last 3 days have been said (on MN or elsewhere) about Riven's personal situation. I do know that if Riven had not started this from MN, her case would have been picked over and pulled to shreds by MNers without MNHQ passing any comments whatsoever.

guess the thing is, well thought out plans in the past havent worked. Nothing has!! Yes this too might not have worked but atleast we tried is all i can say.
Carers have so little engery after spending allday and sometimes all night caring for their loved ones. Carers get £55 a week for their role but if your caring for more than one person, you still only get £55 a week. Im pretty sure people like Riven spend more hours up with their family in the night than I do, but know with 3 people to care for I might have three times as many appointments to get my kids and dh too. It still remains the same.
Now Im sorry but £55 a week, or £7.85 a day is stone cold cheap labour and if we all stopped the government would go bust with the costs. We dont do this for money, we do it because we love our families and want to but love does not give you sleep, pay for the extra equipment or pick you up when you have just had way too much to carry on.

Seriously if the government were abit more PROACTIVE in seeing what was needing instead of waiting for Crisis to happen and being REACTIVE, they would save money, time and alot of peoples lives and sanity imo.

Um, Gigantaur that sounds as if everyone who got invovled had no idea of the real issues. I truly suspect that as mother to two with ASD and having been wife to someone with very sevre depression that I am. We have enver received one minute of respite and never will.

Would the care of this person even until April have been increased without this campaign? I doubt it.

I am invovled with all these campaigns; indeed I work in the field, at a rate far below that I could make becuase I want to make myself accessible to carers but everything takes time, and then only if and that's a big if everyone can get their act toegether.

Sometimes there isn;t time. I don;t think the whole thing was a mistake; it was a sharp lesson in how much power the media has these days for sure but not a mistake. I went our on Friday and everyone there knew the story; people who hadn't realised I was a carer and who asked questions and lsitened to the whole DLA thing. Nurses who thought you got HR LLDLA and a car becuase you were eharing impaired.

That's valuable imho.

And don;t forget Lisa that £7.85 a day will end for so many when the PIP comes in. ANd this ahs increased traffic to the DLA campaign.

20% of DLA claims cut won;t necessarily equal 20% less people accessing DLA becuase ATM lower rate claimants can't get access anyway, but the assessment menas used will eman a disproportionate number of those affected will be those with non visible disability. MH, LD, ASD, whatever.

What exactly will happen to these famillies I do not know. Who will care for the child when their carers are called up for work schemes becuase officially they now have no disability or caring role? Who has a pile of jobs to hand out to a large number of people who require flexible hours and school term time only and will quite likely be exhausted?

It's shocking. And as long as lady who started it accidentally is OK, as she seems to be, I for one am glad for any publicity.

im dreading ti all tbh, DD2 DLA pays for her private special preschool sessions as there is nothign suitbale here, and what little we get for DD1 pays for her special equipment and activities.
DH was refused DLA even with the cancer, but tbh im just too tired to fight anymore and they will do what the hell they want, the governement, because they have no clue what its like to live this life.
kind of wish i stayed at work now and dealt with that stress, seem to have swap one stress for another :(

Respite, have never had a minute

Raising awareness through MN and creating a proper, well targeted, well thought-through campaign are not, though, mutually exclusive, are they?

I get really, really irritated by the cries of 'you shoudn't have done anything, now look what you've done!'

What have we done? Helped Riven (although she may not like the short-term publicity) and raised awareness in such a way that - if acted upon appropriately by those with the knowledge and know how - a serious campaign can be started.

I fail to see how that is a problem.

Without the DLA the boys lose a lot but we lose the ability to repair the damage they do through their ASD which in turn would see us very quickly evicted I think- although the loss of assocuiated tax credits and potential;ly CA would have the same effect. We buy in respite so wed lose that, and the use of a car (family many miles awqay, no bus there or traiin here)

DH wouldn;t be allowed to work from an LA home neither would I, spp our self employent attempts would flounder.

It's all very scary; DH refuses to let me talk about it as he is scared too but horrible and causing me sleepless nights.I just can't find work around pick ups though.

Queengigantauro

you quoted my axe grinner comment.
I haven't spotted any of your posts and would have to read thread, including this one to know what your view was or how you expressed it.

You presumeably think that I meant one group of people with one set of opinions and that I have 'picked a side'

What I actually meant by axes being ground was that whenever the general discussion starts people bring into it their specific issue. In that I include those who feel disabled parents deserve their lot, Cameron was personally responsible, generalized complaints about mumsnet royalty or that riven brought this situation about deliberately.plus many others

But neutral comments are being interpreted as taking a particular side so i shall withdraw.

Im glad to see this issue has been raised again as mn had gone so quiet on the subject it was uncomfortable. Like it had been forgotton which I certainly had not and obviously from this thread, nobody had forgotton.
I deraly hope Riven and family are ok and find that the extra 3 hours will make life easier to live with.
Herbietea I have just skimmed the thread and feel for you being deleted so much. I cant say whether I agree with you or not due to the deleted posts.
I was on the original thread and although didnt act as such, was very interested.
It makes me wonder though that if all this 'campaign' as its now being called had not gone too far, how many people would be now saying how amazing we on that thread were and not finger pointing. It could of gone one of two ways and sadly it went berzerk. That though is called hindsight.

dearly, not deraly!

Justine and Peachy - Thank you for the updates.

All the best to Riven, I hope that she and her family are bearing up.

All the coverage I have seen has been positive, and I hope that something can come of this for the wider carer community. The media (and the general newsreading public) do seem to need a personal story to hang this kind of issue on, but it is a shame that it has been so stressful for R.

The story has also brought new posters to the SN boards, where they can give and receive support and advice, which is also a good thing IMHO.

Tyson - in what way did this 'campaign', as you are calling it, go too far?

QueenGigantaurofMnet Sun 23-Jan-11 14:50:59
Sarahitaly - excellent post.

But sadly there has been nowhere near as much support for the threads about the DLA cuts or links to already established campaigns to support disabled families.

It seems that without a well known face to relate to people just aren't that interested.

Is this a surprise to you? Really?

I hope that Riven gets more help, if it happens at the cost of someone else then the system is even more disgusting that I already knew.

Too far as in Riven needing a break from here, well meaning mners leaving and the media doorstepping Riven. I would not of liked to be in her shoes tbh. But I think in the end Justine is right and those involved should be proud of themselves.
BTW I am not trying to piss people off by my post at all, its just my opinion of how things have come across in the last few days.

To anyone who knows Riven - please pass on my best wishes

I really don't see what harm Riven could have done, unless she's in a mansion somewhere really counting her pots of gold, with live in staff and a dd without any SN......nothing but good can come of this, maybe not even for Riven but if it even helps people put a couple of coins in the next charity that helps people with disabilities it's good.

Tyson - I wasn't pissed off, I was just interested to know why you thought that!

Have other MNers left? I didn't know. I realised that Riven has left, although hopefully that's a temporary thing.

I believe someone did but think i may of seen her name in this thread so maybe she changed her mind, im confusing myself now

Thanks for the update Justine. I did email MNHQ (not that I've received a reply, harumph) the other day with my thoughts on the media fall-out, particularly Riven's privacy being breached.

Here's (some of) what I said...

I saw the start of Riven's thread yesterday just as the first cries of "contact the media" were going up. I could tell straight away that this was going to be a huge story.

Then there was a massive - and, of course, massively well-intentioned - rush to do something, anything to help. And before anyone knew it, people were contacting media, tweeting journalists, setting up Facebook accounts etc etc.

What should have happened, as this rush to action was happening, was that someone should have taken a minute to say to Riven, "Look, this is going to be a big news story. The media are going to want to speak to you; they'll use the pictures of your dd that are on your MN profile and have already appeared in the Telegraph; you will have people camping on your doorstep wanting to speak to you. If you don't want that to happen, you should say something now". In hindsight, I wish I had posted it, because Riven seems genuinely shaken by what's happened and I'm sure would never have wished for all this attention, whatever the ultimate outcome of her story is.

This is not a criticism of anyone at MNHQ, by the way. There are many media-savvy MNers who could have sounded a note of caution and I am sure that you were advising her as best you could.

What we all - as a community - need to learn is this. The Mumsnet brand and community is more powerful than ever. People DO take notice of what happens on there and that is multiplied when MNers actually go out of their way to bring it to the media's attention. And once the genie is out of the bottle, you cannot put it back: the story will develop a life of its own and the media will not stop until it gets the story that fits its own agenda or the day's news cycle. This can be to the greater good, of course, but good people can also be damaged in the process.

I'm also not sure how it can be combatted - this isn't a simple case of putting some guidelines at the top of the AIBU board. I guess what I'm saying is: you have a very motivated group of people acting on behalf of the MN community. When these ad hoc campaigns pop up like this, perhaps some of us (at MNHQ and posting on the threads) just need to be the voices of reason from time to time. Beyond that, I'm not sure what other concrete measures can be taken.

Sorry, I know you're all talking about the bigger issues now, but I wanted to get that off my chest.

squeaver....Riven is a very intelligent woman who is quite media savvy, I cannot think that she is genuinely shaken to the core...she took DC's visit very well.

There's lots to say about this story way down the line and to reflect upon what is has/n't achieved but that poor Riven as a shrinking violet is just not so.

We are adults here and not the responsibility of MN, it's members or HQ. This board is the same as chatting on a megaphone, it's all for public view, which is the MN nn and changing them whenever you like is brilliant and should be used to its advantage.

I think the campaigning and actions were rushed blah blah but the key thing that could have helped was people checking the full facts before posting well-intentioned generalisations about what Riven did or didn't have. I am annoyed that her council were able to wriggle out of stuff by giving a list of things in their press statement that they gave her that weren't (I don't think) relevant to what she was asking for.

I think the spirit of it was definitely positive and hope that it encourages people to see carers as an issue worth caring about into the future. Riven said very early on that she didn't want it to be all about her and I think the press have picked up on that point well