Category Archives: Blogging

Indignation and initiative vs institutional inertia

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This is a post that originally appeared on the #107days of action campaign site, raising awareness about the death of Connor Sparrowhawk who died a preventable death in specialist NHS unit last year:

Imagine if you had £3,500 a week to run a campaign, consider the awareness you could raise with even a tenth of that.

Now multiply £3,500 – the average weekly cost of a place at an assessment and treatment unit (ATU) – by 3,250 – the number of learning disabled people in such units. That’s an indicator of the costs involved in using controversial Winterbourne View-style settings.

Just over a year ago, 18-year-old Connor Sparrowhawk, aka Laughing Boy or LB, was admitted to a Southern Health NHS Trust ATU where he died an avoidable death 107 days later.

In contrast to the vast amounts spent by commissioners on places like the one where LB died, the #JusticeforLB campaign sparked by his death is ‘funded’ solely by goodwill. No PR team crafting on-message missives, no policy wonks collating information, no consultants advising on publicity.

#107days of action began on Wednesday 19 March, a year to the day Connor went into Slade House, and continues until the first anniversary of his death, Friday 4 July 2014. Half the aim – and I’ll come to the other half at the end of this post – is to “inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes”. The goal is to capture the “energy, support and outrage” ignited by LB’s death.This post, around halfway through #107days and written from the perspective of having reported on #JusticeforLB at the start of the campaign, looks at what’s been achieved so far.

I’m not describing the “abject failure” of progress to rid social care of Winterbourne-style settings – care minister Norman Lamb’s words – the sort of apologies for care where compassion is often as absent as any actual assessment or treatment. Nor do I write about the errors at Southern (you can read here about the enforcement action from health regulators after a string of failures). I want to explain, from my interested observer’s standpoint, the impact of #107days and what might set it apart from other awareness drives.

It’s a timely moment to do this. It is now three years since Winterbourne, less than a week after Panorama yet again highlighted abuse and neglect in care homes and a few days since new information on the use of restraint and medication for people in units like LB’s. The campaign reflects not only the importance of #JusticeforLB, but also an unmet need to finally change attitudes towards vulnerable people (and it’s not as if we don’t know what “good care” looks like).

There is a palpable sense that the #107days campaign is different. Talking to journalists, families, activists, academics, bloggers and social care providers, the word “campaign” doesn’t adequately define #107days. It’s an, organic, evolving movement for change, a collaborative wave of effort involving a remarkably diverse range of folk including families, carers, people with learning disabilities, advocates, academics and learning disability nurses.

It’s worth noting the campaign’s global reach. LB’s bus postcard has been pictured all over the UK and as far away as Canada, America, Ireland, France, Majorca and São Paulo. LB has touched a bus driver in Vancouver and brownies in New Zealand.

Because of the blog run by Connor’s mother Sara Ryan (launched long before his death), LB and his family are not mere statistics in a report or anonymised case study “victims” in yet another care scandal. Instead we have Connor: a son, brother, nephew, friend, schoolmate, neighbour – and much more – deprived of his potential. We forget neither his face and personality nor the honest grief of a family facing “a black hole of unspeakable and immeasurable and incomprehensible pain”.

Yet while anger and angst has sparked and continues to fan #107days, the overwhelming atmosphere is optimistic. There is the sense that outrage, can should and will force action (and it’s worth mentioning, as #JusticeforLB supporters have stressed, exposing bad care begs a focus on good care – lest we forget and tar all professional carers with the same apathetic brush).

Both in its irreverent attitude and wide-ranging activity, this is no orthodox campaign. It is human and accessible because of its eclectic and inclusive nature (see, for example, Change People’s easy read version of the report into Connor’s death). And at the heart of the campaign lie concrete demands. In its bottom-up, social media-driven, grassroots approach and dogged determination, #107days has a hint of the Spartacus campaign against welfare cuts (Spartacus activist Bendy Girl is supporting #JusticeforLB through her work with the newly formed People First England).

As for impact so far, daily blogposts have attracted over 25,000 hits with visitors from 63 countries. There have been 7,000 or so tweets (which pre-date #107days) 1,380 followers, the #justiceforLB hashtag has been used more than 3,560 times and the #107days hashtag more than 2,000 times in the last month (thanks to George Julian for the number crunching). So far, the total amount raised for Connor’s family’s legal bills is around £10,000.

I can’t list each #107day but suffice it to say that the exhaustive activities and analysis so far include creative and sporting achievements highlighting the campaign as well as education-based events (or as Sara described progress on only Day 6 of #107: “Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events”).

Along with blogs, beach art and buses in Connor’s name, there’s an LB truck, the tale of two villages’ awareness-raising, a hair-raising homage, autobiographical posts about autism, siblings’ stories, sporting activities, and lectures. And patchwork, postcards, pencil cases, paddling (by a 15-year-old rower) and petition-style letters (open to signatures).

It’s worth noting that while learning disability should be but isn’t a mainstream media issue, there have been pieces in the Guardian and Daily Telegraph plus important coverage on Radio 4 , BBC Oxford and in the specialist press. BBC Radio Oxford‘s Phil Gayle and team have followed developments relentlessly and Sting Radio produced an uplifting show on the first day of the campaign. While some of this coverage pre-dates #107days, it reflects how media attention has been captured solely thanks to the efforts of Connor’s family and supporters (links to other coverage are on Sara’s blog).

As for reaching the key figures who could help make the changes #107days wants, the campaign has had contact with health secretary Jeremy Hunt, care minister Norman Lamb, chief inspector of adult social care Andrea Sutcliffe and Winterbourne improvement programme director Bill Mumford, care provider organisations and staff.

Earlier, I described the first half of #107days’ aims to “inspire, collate and share positive actions” and capture the “energy, support and outrage” ignited by LB’s death. Based on the efforts and impact so far, and the campaign is clearly on track.

But the remaining target – to “ensure that lasting changes and improvements are made” – is more elusive, largely because it lies outside the responsibility and remit of members of the #107days campaign.

Contrast the collective nerve, verve, indignation and initiative of the last 46 days to what Norman Lamb calls the historic “institutional inertia” of NHS and local government commissioners, a cultural apathy undermining plans to move more people out of Winterbourne-style units.

The existence and continued use of ATUs might be a challenging and seemingly intractable problem. But that’s not good enough a reason for commissioners – and those who run and govern such places – to ignore the problem. There are good intentions coming from some in authority; people just need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

He should never have died

I launched this blog as a platform for some of the excellent, uplifting, often unsung, good practice in social and public policy.

In contrast, this week I’ve been finding out about some of the worst care possible.

The opposite of “care”, in fact.

A host of very adept, passionate bloggers and campaigners have been demanding not only answers, but action after the death last year of Connor Sparrowhawk. Connor, 18, died while “being cared for” at a Southern Health Trust in-patient unit in Oxfordshire for people with learning disabilities.

As Connor’s mother Sara has said, “He should never have died and the appalling inadequacy of the care he received should not be possible in the NHS.” Sara’s powerful blog includes links to bloggers and commentators whose words are well worth reading.

I had to share Sara’s beautiful and powerful slideshow here; please watch it if you’ve not seen it before. And if you have already seen it, watch it again to remind yourself of the very real people and families behind the astonishing inequalities in care experienced by people with learning disabilities.

Much has been written about Connor, and more will be – although clearly we need more action than words alone – but taken together, Sara’s slideshow and these stark words from the independent report published last week tell you much of what you need to know: “the death of [Connor] was preventable”.

* Follow #JusticeforLB on Twitter @JusticeforLB
* Read more on Sara’s blog and sign up for email updates here

The Social Issue, part of the Guardian’s blogging network

Good to see a nod to the blog on the Guardian Select pages this morning, especially when the page featured is from the Bound exhibition about disability issues. A reminder of the point of this site: “It champions the good stuff going on in terms of support, much of it small unsung hero-type projects, which is important at a time that so many charities and support schemes are losing funding.” Read more here.

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Writing about wrongs: can social affairs journalism make a difference?

Louis Tickle, freelance journalist
As a journalist writing on social affairs I often wonder if my articles make any difference or whether this kind of journalism is essentially exploitative. The dilemma isn’t original. Journalists and photographers struggle with it all the time. Mostly I ignore it. But it niggles.

So, I’m commissioned by a children’s charity to interview a single mum it’s been working with. She’s got five kids; black mould spreads thickly across her kitchen ceiling and down the back wall. One of her daughters, a little girl with asthma, sleeps in a pink bedroom so icily cold I feel my skin shrink when we look in. A single photograph of a baby lost to cot death is unobtrusively placed among the many pictures of her other children displayed in the front room.

There’s a housing association building site at the end of the terraced row, but this woman can’t get hold of the £400 she needs to secure one of the warm, dry family houses that will soon be available.

I write my piece feeling angry and hopeless. My fee is more than the money she needs for that deposit. I wrestle with the thought that I should give it to her. I don’t.

A year on, I still wonder if I should have done. This is hardly war reporting, but these are people living on a front line. They’re who I write about. And then I disappear off, my notebook full, my deadline pressing. I rarely see them again.

Does this kind of journalism change anything? I don’t know. It’s what I do, what I can do, what I have time to do. I know it’s not enough.

Though what’s playing out in the Leveson enquiry means that rotten practices are being dragged through the mire, the level of underlying suspicion about journalism saddens me, because it’s based on a misunderstanding of what any kind of serious journalism is about.

I don’t do this job because I want to stiff as many people as possible in the name of selling papers. I do it because stuff goes badly wrong in certain bits of public life, and in the small way that writing articles allows, I want to ask why – then persuade, cajole, flatter or embarrass people into giving me the answer.

The judgements I make in writing a piece may be taken fast, but they aren’t taken lightly. For instance…

I’m constantly examining the ethics of how I go about writing a piece. Particularly if an interviewee is vulnerable or not media savvy, I know that I can’t get across their tone of voice, or give every bit of background about their situation, so which quote I pick really matters.

I’ve written a fair bit about young single mothers. Asked why they got pregnant, why they chose to keep the baby, how they manage. And sometimes you’ll get a teenager replying along the lines of: ‘Some girls do get pregnant to get a council house, yeah, absolutely.’

What do I do with that? I know those words will make a strong headline. But if I use them rather than the less instantly “good value” comments, I don’t do this young mother’s entire situation justice. So I will think very, very hard about how to treat that kind of quote, and whether to include it at all.

Occasionally, I do stuff I know an editor wouldn’t like. National news organisations do not give interviewees the chance to see or approve copy before publication. There are practical reasons for this – deadlines, for example – but mostly, it’s about retaining editorial independence. Otherwise people ring up and say, “actually, I’d prefer it if you didn’t write about such-and-such a thing I told you about, it’ll make life really awkward.”

That, I’m afraid, is tough. If you don’t want me to write something, then don’t tell me, or alternatively, negotiate when you want to go off the record carefully and in advance.

But when a charity puts me in touch with someone struggling to rebuild their life, and they talk frankly about the hell they’ve been through, I’m aware a clumsily phrased comment about their situation could knock their confidence at best and make life even more difficult for them at worst. So sometimes I will read back quotes to an interviewee to make sure I have accurately reflected their views and they’re happy to go public with them.

On one occasion, I spent an afternoon with a young recovering drug addict who had spent four years on the game to fund her and her former boyfriend’s habit. She’d had her eldest daughter taken from her by social services: now pregnant again and with a new partner, she was on track to being allowed to keep her baby.

Given what she told me about the horrors of her previous lifestyle and job, I don’t know how she’d found the strength to kick her habit, but I was damned sure that nothing I wrote was going to set her back. The finished piece was written entirely in the first person; the risk of misrepresenting someone when you do this is real, no matter how good your intentions.

So I sent her the finished piece to look at. In this specific situation, editorial independence wasn’t going to trump her right to have her life described accurately and in a way that wasn’t going to put her recovery at risk.
Unlike many ‘important’ people who cavil at tiny bits of phrasing, this woman didn’t ask for a single change. And when my editor told me to go back and ask her a question – how much did she charge for each particular “service”? – (something I regard as the low point of my journalistic career) she didn’t get offended or slam the phone down. She told me. And, as I was finishing the call, she said thank you.

I loved doing that piece of work. The access and insight journalists get is central to why I am still entranced by this job.

But returning to my original question, does this kind of journalism change anything?

Well, that piece was published in The Times. A lot of people would have read it. The charity that supported her would have got some publicity.

What they really needed though was money to support more girls as they tried to get off the game. Maybe the piece helped them twist a few funders’ arms. Whatever it did, it’s nothing in comparison to the work done by dedicated experts at the coalface of disadvantage, poverty, suffering and violence.

When I try to answer the ‘does it make a difference’ question, I feel a bit like when you donate to charity online. Do you pick £2, £10, £25 or a bigger sum that means you won’t be able to buy that dress you had your eye on? Whatever you put is something, but it’s probably not as much as you could have given, and it’s certainly never enough.

12 days of Christmas, Social Issue-style

Season’s greetings from The Social Issue – to mark the jollities, here’s a snapshot of some of the upbeat posts and pictures about people, projects and places featured over the last 12 months. This festive pick is by no means the best of the bunch – the inspiring stories below are included as they’re accompanied by some interestin and images and almost fit with a festive carol, if you allow for a little the poetic and numerical licence…

Very huge thanks to the Social Issue’s small band of regular and guest bloggers, all contributors, supporters, readers and everyone who’s got in touch with story ideas and feedback. See you in January.

On the first day of Christmas, the blogosphere brought to me:

A tiger in an art show

Batik Tiger created by a student at specialist autism college, Beechwood

Two JCBs

The Miller Road project, Banbury, where agencies are tackling youth housing and training. Pic: John Alexander

Three fab grans

Hermi, 85: “I don’t really feel like an older woman.”

Four working teens

From antisocial behaviour to force for social good; Buzz Bikes, Wales.

Five(ish) eco tips

Eco hero Phil uses a “smart plug” to monitor domestic energy use

Six(ty) volunteers

Young volunteer with City Corps, Rodney WIlliams

Seven(teen) pairs of wellies

Abandoned festival rubbish, Wales, gets recycled for the homeless, pic credit: Graham Williams

Eight(een-years-old and over) people campaigning

Participants in the Homeless Games, Liverpool

1950s hall revamping

"The kid who talked of burning down the place is now volunteering to paint it."

10 lads a leaping

11-year-olds integrating

Children's al fresco activiites at the Big Life group summer scheme

12(+) painters painting

View from the Southbank of Tower Bridge, Aaron Pilgrim, CoolTan Arts

Merry Christmas and Happy New Year!

Why everyone should support One Month Before Heartbreak

I’m supporting the two-day online campaign, One Month Before Heartbreak, that took place this weekend against planned reforms to Disability Living Allowance (DLA), the disability benefit that allows tens of thousands of disabled people to get out and about from residential homes. The DLA consultation period ends on February 14th, Valentine’s Day.

In the words of blogger Brianb: “Many of us, concerned at the way the coalition government is bullying, victimising, stereotyping, abandoning and, stigmatising those of us who live with disability, have decided to publish blogs almost simultaneously to draw attention to these injustices being perpetrated”.

Given the warm glow the government wants to create with its big society approach, the cut seems even more unfair, and shortsighted, and as The Guardian’s David Brindle has highlighted, the cut is not only “the meanest and nastiest cut of all in the carnage that is sweeping through our public services” but is based on flawed reasoning.

Although individual campaigning organisations within the disability sector might have a history of being vocal, as a whole, individuals with disabilities and their carers aren’t much known for taking off their gloves and sticking their heads above the parapet. Until now. A huge, vibrant and persuasive online community of writers and campaigners is fighting injustice through blogging and on twitter.

As blogger Ned Ludd Carer points out, the cuts are “about locking up disabled people in their own homes and taking away the desperately needed care…This doesn’t have to happen. We need to stop these cuts before they do any more damage. We carers need to get our heads out of the sand and start shouting. We need to stop being the silent, heroic martyrs the press and TV love to wheel out for a nice heartwarming end to the programme. We need to be Carers With Attitude.” The gloves are off.

Arbitrary Constant has highlighted the main concerns for the disabled while you can also read Community Care’s blog for a litany of cuts that hit the vulnerable.

Anyone in two minds about supporting the campaign – and there are already 2,500 names on the online petition to recall the consultation – should read blogger Bendy Girl who argues that the cuts should be everybody’s business, not just an issue for the disabled and their carers.

As the One Month Before Heartbreak campaign stresses, 100 years ago “disabled people were institutionalised and kept out of the public eye so that the public would need not feel embarrassed to look upon a disabled person.” The removal of DLA will trap the disabled in their care homes. And that’s something best consigned to the history books.

The Social Issue on the Guardian’s radar

Less than a week since its launch and The Social Issue gets onto the radar of the Guardian’s Society Daily blog; Patrick Butler, the paper’s editor of society, health and education policy was clearly blown away with the irresistible combination of Shaks Ghosh and Groucho Marx (Shaks wrote the guest blog, Groucho provided the SocialSpeak quote).

Thanks to everyone who’s commented on the blog so far, either on the site or via email – the feedback’s been helpful and, as a result, there are a few gentle tweaks and subtle additions here and there. Spot the difference.