Week 7: Draft Two #LBBill eve #107days

Week 7 of #107days Take Two is given over to the #LBBill. Today’s post, on the eve of the launch of the second draft of the LB Bill, is a guest post from Mark Neary, the initial instigator of the Bill: 

It feels a long time since that Twitter conversation about turning current practice on its head and bringing in laws that make it much more difficult for the State to wrench people from their homes & leave them languishing in assessment and treatment units.

Since that conversation last summer, the situation of the people at the heart of #LBBill hasn’t improved one iota. More deaths. More people being taken from their homes and moved 100s of miles away. More court judgements exposing the questionable actions of authorities over their use of the Mental Capacity Act. Only today, Josh Wills’ family posted the news that there is going to be another delay in Josh’s return to Cornwall from the unit in Birmingham where he has been kept for the past three years. More families uprooting themselves to be closer to their detained loved ones. More huge assessment and treatment units being built. More inquiries. More reports. More committees/concordats/action groups. More joint statements from Mencap and the Challenging Behaviour Foundation calling for…… what? Pick a day – pick an issue. And more deceit, spin and violence from the organisations trusted with the care of vulnerable people.

What I find most depressing about the lack of action is the oft repeated get out clause from the likes of Norman Lamb, Simon Stevens, all the way down to delegates at conferences that “It’s the culture that needs changing”. If I hear that one more time, I’m going to custard pie the speaker. The Mental Capacity Act is the law. The Deprivation of Liberty Safeguards are the law. The Human Rights Act. I could go on and on. If the State can’t get their culture right, then just apply the sodding law. You can sort your culture out later. Of course, LBBill is another law for the State to ignore, abuse, lose amongst its relentless culture. It is worrying.

But I think there is something very different about #LBBill that gives it a fair chance of succeeding. It has come from the people who are usually ignored when it comes to legislation for the disabled. It has come from the people, their families and their allies. It has an energy that I have never experienced before. It has a heart that is sorely missing in most social care discourse. It has an instinct for the bleeding obvious. It has a humour that cuts right through the usual flim flam. It has more experts by experience than you can shake a stick at. And it has staying power. LBBill ain’t going away.

Too many lives and justice and futures are at stake.

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Week 4: Deaf Ears and Force Majeure #107days

Week 4 has received a huge reaction so far on social media, it seems the issue of listening or non-listening (to families, parents, disabled people) touches a nerve for many of us. This week started with Katherine’s thoughts on Motherblame, followed by Sara’s on why it happens The moon on a stick? Today Mark Neary has kindly offered his perspective:

Deaf Ears & Force Majeure

Since being asked to write this post for the Listening to Families week of #107days Take two, I’ve been thinking back over the seven years since Steven was transitioned into adult services. It makes my heart sink to think that in that time, Steven has been barely listened to by the care professionals. If I think if I have been listened to, it registers on the scale slightly lower than barely.

In 2010, Steven spent the whole year in an ATU. Speaking his wishes never got him anywhere, so he took to singing his desire to come back home and greeted the ATU manager every morning with ‘I Want To Break Free’. At the time, I felt I was being humoured. But when we got hold of the social care records, I found it was much worse, the professionals were openly hostile to my input into Steven’s care. Don’t take my word for it. In 2011, Justice Peter Jackson ruled that Steven’s Article 5 & 8 ECHR Human Rights had been breached and this is what he had to say on the subject of listening to the family:

It (Hillingdon) acted as if it had the right to make decisions about Steven, and by a combination of turning a deaf ear and force majeure, it tried to wear down Mr Neary’s resistance, stretching its relationship with him almost to breaking point. It relied upon him coming to see things its way, even though, as events have proved, he was right and it was wrong.

And later in the judgement:

Regrettably, once Mr Neary’s initial resistance to its plans weakened and fell away, Hillingdon appears to have taken a dim view of his concerns. In an e-mail dated 22 February from the social worker to the support unit, the following appears: “There is always going to be something or other that Mr Neary will bring up and more often than not we are having to appease his needs rather than Steven’s. I know that it seems that you as a team are constantly being questioned but this will be the case because Mr Neary wants to find issues with the care that other people give Steven. We just need to ensure like we have that we are working together for the best outcome for Steven.” It is now accepted by Hillingdon that Mr Neary had done nothing to deserve this disrespect. The unfortunate tone of the message demonstrates that even at this stage the expression “working together” did not include working together with Steven’s father in the true sense and that Hillingdon’s thinking had by this stage become adversarial. Worse, the professional view was withheld from Mr Neary, perhaps because revealing it would have provoked a renewed challenge.

And in his final summing up:

Hillingdon’s approach was calculated to prevent proper scrutiny of the situation it had created. In the weeks after Steven’s admission, it successfully overbore Mr Neary’s opposition. It did not seriously listen to his objections and the suggestion that it might withdraw its support for Steven at home was always likely to have a chilling effect. Once Mr Neary’s resistance was tamed, the question of whether Steven was in the right place did not come under any balanced assessment.

The big question is why? Our story is not unique. Why do professionals take such a combative stance when straight forward dialogue and listening to the family experience ought to be so valuable?

I think Sara hit the nail on the head yesterday and it comes back to the person being seen as not really human. So, by default, the person’s family occupies a strange space in the official framing, whereby they are not seen as like other families. It doesn’t matter how you present, what your life experience is, you are forced into a lesser than box.

I’ve obviously thought about this many times since the court case and I believe that the main reason why families are side-lined are because they have to be.

Social care is built on several building blocks of illusions. The illusion of the social care world couldn’t sustain itself if the family’s reality was heard and attended to. To maintain the illusion the family has to be ignored or attacked. At home, we get very few incidents of challenging behaviour with Steven; at the ATU, they were recording up to 30 per week. So, to protect the illusion that the professionals knew best and that the Unit was the best place for him, the attacks on me started; they believed I didn’t report honestly. They believed that I wouldn’t continue with behaviour management programmes. And we move into very dangerous territory if I dared to suggest that, actually, I didn’t need a behaviour management programme.

It must be awful, going into work each day, terrified that at any moment, you might fall into the king’s new clothes abyss. Once at a meeting, I laughed. It was spontaneous. I certainly didn’t mean to do it. The terror in the room was palpable. The abyss opened. I think Steven and I paid quite a high price for nearly exposing the void.

As part of the group trying to make #LBBill become a reality, I get scared. Empowering legislation like the Human Rights Act, The Mental Capacity Act often seems to have the adverse effect. Having rights involves listening to families. It also involves giving some power away. That’s an almighty shift and one that seems a very long way away.

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Week 4: Listening to families; the moon on a stick? #107days

We were delighted with the response to Katherine’s post on mother blaming yesterday and we continue Week 4 with a post from Sara:

On April 13 2013 I made a complaint to Sloven/OCC about the period of time leading up to LB’s admittance to STATT. My main complaint was Overall I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated. This complaint was largely dismissed by a Sloven internal review. Five weeks later I raised urgent concerns with STATT staff because LB had had a seizure. They’d noticed he’d bitten his tongue but hadn’t made the link with seizure activity. Six weeks later he was dead. [Howl]

I felt my voice as a carer for LB was not listened to and as a result the seriousness of the situation was not appreciated.

Person centred planning is (or should be) at the heart of social care provision (in the same way patient centred care should be central in healthcare), and techniques like Circles of Support are becoming more common. Families are a remarkable resource for health and social care staff. I wrote about this in an article to do with diagnosing autism a couple of years ago arguing that parents maybe the best resource in identifying autism. They typically understand and know their child/sibling/grandchild better than anyone. They love their child/ren and want the best for them. As Katherine writes, they want their child to have the same life chances as everyone else. But this love, expertise, knowledge and understanding is too often dismissed and ignored. Health and social care providers/staff appear to think they know better about the person they are supporting and families are portrayed as problematic.

Funnily enough, we don’t necessarily know we’re portrayed as unreasonable, or worse. It’s only on reading health or social care notes that this may become apparent. After Mark Neary raised concerns about Steven’s clothes disappearing, the social worker famously wrote There’s always something or other with Mr Neary… in an email to staff. Sally commented on my blog last week:

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Blaming parents seems peculiar really and there seems to be little reflection on the part of these professionals to maybe reflect why Mark might want to know where Steven’s clothes are. Or why Sally turned down a particular service. Boxes of records and emails in the Justice shed recount my apparent hostility, refusal to accept the moon on a stick and general flakiness, positions inconsistent with other areas of my life that I seem to manage fine; bringing up LB’s sibs and working full time (although the kids might disagree).

Why aren’t families listened to?
I’ve tried to tease out some possible reasons below. These are early thoughts and there is quite a bit of overlap between the categories.

  1. Basic humanity: If someone isn’t seen as fully human there’s no reason to bother to engage with family members. Much easier to just get on with the task at hand – containment at the lowest possible cost – and exclude pesky relatives who bang on about better care, missing clothes and the like.
  2. Background: By the time the child reaches adulthood, families typically have experienced some fairly full on tough times in terms of accessing support across the years. Adulthood offers little certainty, no imagined future and deep concern about what will happen when parents are no longer around. Not understanding or recognising this background can too easily lead to exchanges that damage relationships between families and professionals.
  3. Black hole of trust: Trust is essential (as it is in healthcare) to the provision of good and effective social care yet it seems to be absent from consideration by social care professionals and providers. Fear is probably the most common emotion I’ve encountered in families I know both personally and through work. The lack of engagement with trust flags up a disregard for the expertise and knowledge families have to offer.
  4. Budgetary considerations: A lack of available resources/provision can mean that family expectations (that people will be supported to lead enriched lives) is so far out of reach that overstretched professionals don’t really want to listen to families. There are no options so it’s easier to ignore increasingly frazzled and concerned family members.
  5. Moon on a stick: There can be a complete disconnect between what families and providers think good care looks like. Providers may think the care provided is good enough and families are unreasonable and/or difficult to turn it down or challenge it.
  6. Capacity misunderstandings/misappropriation: The Mental Capacity Act can be used as a bit of a weapon against families. Partly (I think) because of misunderstandings around the workings of the act but also because it’s a handy tool to bash back concerned families and get on with the containment mentioned in 1.

That’s where I’m at right now but I realise this only scrapes the surface of an area that urgently needs attention. Any comments/thoughts/additions or revisions would be great so we could start to really flesh this out. If any health/social care professionals could chip with their experiences, thoughts and observations, that would be fab.

There may be some fairly straightforward solutions here.

Moon on a stick

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

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Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!

Day 64: A jewel of a future #107days

Day 64 was adopted by Zoe, who got in touch very early on in the #107days campaign to adopt today. Here’s why:

I first found out about LB and his family when Mark Neary posted on facebook with the awful news about Connor’s death. Like other people, I was outraged and incredulous that this type of abject neglect could happen in a unit that was supposed to be staffed by people with expertise in helping young people like Connor who are at a crisis point in their lives.

Reading Connor and his family’s backstory and then following what has happened and is still happening in the aftermath of Connor’s preventable death, I’ve been awakened to the horrors of ATUs and moved to join the #JusticeforLB and #107days campaigns in order to do what I can to help.

Our school, Bright Futures has an active PTA called ‘Friends of Bright Futures School’. We run regular events and had scheduled a jewellery party to raise funds for FBFS. When the #107days campaign was announced, we decided instead to use to the event to raise money towards the costs of legal representation at Connor’s inquest. We also hope to raise awareness of Connor’s preventable death and the subsequent dehumanising treatment of his family by Southern Heath Trust by getting some coverage in our local paper.

I’ve written some thoughts on what I think are the components of a quality service for young people with developmental difficulties who are at a crisis point in their lives. Many others have made similar suggestions. There have been conferences, academic papers, TV documentaries and public inquiries about what has gone wrong in the ATU system and more widely in services for people with learning difficulties… but on a weekly basis we are still hearing of more young people and their families who have been subjected to neglect, bad practice and abuse.

It is heartening to see the groundswell of grassroots support for #JusticeforLB and it is my fervent hope that we can harness our ‘crowd-rage’ to bring about the change that is needed.

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Bright Futures where the jewellery party will be held – more photos later.

Day 11: A mother’s thoughts #107days

Day 11 was adopted by Shelley Mason. When asked why #JusticeforLB was important to her this was what Shelley had to say:

Justice for LB is important to me because I’m a mum and a human being and what happened to Connor should not be allowed to happen to anyone. Post Winterbourne, it’s shocking to know things are still so bad. Of the 3 families I know who have children with learning disabilities, 2 have made national headlines – my friend Mark Neary and his son Steven and now Sara and Connor. When will people with learning disabilities be treated well everywhere?

I liked that Shelley commented as a mum, and as a human being. This isn’t simply about parents and children, or mothers and sons, it’s about humans and humans, and we’re all a part of that. Anyhow, I digress. I have to admit I was delighted and relieved that Shelley had realised that it was Mother’s Day and she has tailored her post accordingly.

It is Mother’s Day in the UK. Mums all over the country will be receiving cards, hugs and kisses from their children but there is one household I know of, and God knows, there will be thousands of others, where a mum will not receive anything from one of her children. And I can’t really imagine the pain of that scenario.

Shelley introduces LB:

What can I say about Connor himself? I never met him but so wish I had. He was clearly a very funny and witty young man because many a time I’ve laughed out loud at the things his mother, Sara, has written about him. He was not a faceless boy even though we had never met in the flesh. He had depth, he had character and he had passions. Eddie Stobart, lorries, buses and the Mighty Boosh. He was such a real person to me that I took photos of lorries I saw in motorway car parks and sent them to his mother so she could pass them on. So please, before you read any further just take in this one point. Connor Sparrowhawk was a real, living, breathing, laughing young man with the rest of his life stretched out before him.

Describes his time in the unit and reflects on what has come to pass since: A catalogue of falsifications, neglect and shoddiness labelled ‘care’ followed by attempts to pass his death off as ‘natural causes’ and more wriggling than a bucket of eels.You can read Shelley’s post in its entirety here and what more she ends with a Cheesecake Truck, go check it out.

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However you spend today, thank you for taking a moment to read this, and remember LB, Sara and the many many other mothers without their children and children without their mothers today. We hope that our collective actions for #107days will prevent another family facing this pain. Thank you.

Day 5: 107 stories from an assessment and treatment unit #107days

Yesterday we featured WiseGrannie who is a relatively new online voice to the discussions around care and support for people with learning disabilities. Today, we feature Mark Neary and his son Steven, both experts by (bitter/shameful/appalling) experience who have been at the front of the queue when it comes to generously sharing their knowledge and wisdom with others.

Steven + Mark Neary

Mark has a very personal reason for getting involved with #107days and #JusticeforLB:

Steven went away for 3 days respite on 30th December 2009. The following day I stupidly agreed to him being moved to an assessment and treatment unit. 3 days turned into 2 weeks and it finally took 358 days for him to be returned home. In his time in the hellhole, he was unlawfully deprived his Article 5 & Article 8 human rights. The scars are still there for him and me.

I’d like to keep assessment and treatment units in the news until they’re gone for good.

Mark has shared their experience in book form, if you’d like to read more then Get Steven Home and There’s Always Something or Other with Mr Neary provides the background. The titles alone speak volumes. For #107days Mark is sharing 107 stories from Steven’s time in an assessment and treatment unit. He started slightly ahead of us and so far has shared ten stories including Shoes and Beards and Bryan Ferry and Challenging Behaviour. I promise you will laugh and cry and shake your head in disbelief, it’s powerful stuff.

Just last week Mark has also shared two post on his personal blog that bear striking resemblance to LB’s family’s experience to date: A Smile, A Shrug, A Sob and A Stab and the follow up A Smile, A Shrug, A Sob and A Security Alert. It seems there is a pattern to what can be expected, suffice to say that sense prevailed in the end for Mark and Steven, and we take strength from them, and won’t be going anywhere until things change, permanently, for young dudes and dudettes, and until we have some Justice for LB.

We’re very grateful to Mark for sharing his and Steven’s experience with us through #107days. You can follow him on twitter here @MarkNeary1 and you can wish him a Happy Birthday for today too!!

#107days in 107

There have been a number of brilliant suggestions for #107days themed around 107. It’s got to be said that lots involve people with huge stamina and commitment, these aren’t people who do things by half. This post just highlights a few of them, seven in fact, they’ll all get a feature day during #107days where you can learn more, but for now here are some to look out for:

  1. Jane is running 107 kilometres in memory of LB – ten 10k runs on ten consecutive days and a 7k on the final day
  2. Mark is sharing 107 stories from an Assessment and Treatment Unit (ATU) – some positive, some negative, but all about his son Steven
  3. Rachel is going to have 107 conversations with 107 people and ask them to do the same
  4. Sam will share a tweet a day, 107 things she has learned through work bringing people home from ATUs
  5. Jill is observing 107 seconds of silence every day at 1.07pm
  6. WiseGrannie is sharing 107 lessons from 107 dudes and dudettes who she taught
  7. Ann will share a tweet a day, 107 changes she’d like to see.

We’re grateful to everyone supporting #107days and genuinely believe that these actions, along with many more, will help support bringing #JusticeforLB. If you’d like to get involved then let us know here.

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