Quilt_PHM

Week 5: Quilt Stories #107days

The Justice Quilt emerged out of the wonder of #107days last year, patches were crowdsourced from across the world and lovingly stitched together into the magnificent quilt by Janet Read, Janis Firminger, Margaret Taylor and Jean Draper. You can read about the process of making the quilt here.

Dude

This year as part of #107days Take 2 the quilt has taken up residency at the People’s History Museum in Manchester. It is there until Wednesday, 22 April so you’ve another three days to pop along and view it in this magnificent setting. It continues its travels after Manchester, moving to Lancaster University, more about that in due course.

QuiltInfo

This week we will share some of the quilt selfies on this blog and people’s reactions to seeing the quilt. We have some of these from twitter, but we’d love to hear more. Drop us a tweet or a comment on this post of what you felt when you saw the quilt. If you stitched a patch we’d also love to hear from you (whether you’ve seen the quilt of not yet) – why did you get involved, how did you decide on your quilt design, how did you find stitching a patch, what do you think of the final masterpiece?

Quilt_PHM

These amazing pictures in today’s post were taken by Jack; here’s a few more for you to enjoy:

Panel1 Panel2 Panel3

MarkL

Week 4: The Art and the Politics of Listening and Not Listening to Families #107days

Our final blog post this week, on listening or non-listening to families, parents and disabled people comes from Mark Brown:

We don’t realise it but we – the families of children and young adults and adults with learning difficulties are immensely powerful. For decades now our stories have been used to shape aspects of health education and social care policy and with it the lives of tens if not hundreds of thousands. And with those stories and those policies have gone budgets of hundreds of millions of pounds and the jobs and livelihoods of a significant sector of the health, education and social care economy.
For me the problem isn’t always that we aren’t being listened to – it’s that once we have spoken – our stories and experiences are increasingly being manipulated, miss-used and appropriated. It happens to us as individuals and it happens to us as a community. The art of listening and not listening to families has become a significant weapon in the macro and micro-politics of power and we are subject to it as individuals and as a community. I’ll start with how we are listened to as individual families.

Listening and not listening to Individual Families
One of the first things that may happen to us, is that the practitioner or organisation concerned will decide if you are somebody who should or needs to be listened to, or if your opinions can be thrown onto the can be dismissed pile. I’ll come back to the can be dismissed pile a bit later. But if your opinion survives the initial assessment, a decision will then be made about whether your opinion is problematic or useful.

Useful opinions are those that make no additional demands on services. They can be especially useful if they can be used as evidence of what a good service is being provided. Whereas problematic opinions are those that have to be listened to but which demand a level, or approach to service provision that requires additional or atypical resources.

How these problematic opinions are dealt with will depend upon the ethos and expertise of the provider. The better the provider the more they will be able to deploy their resources flexibly and the more Person Centred their approach is likely to be. This kind of service provider or commissioner exists, in fact there are lots of them but the more financial pressure providers come under, the more difficult it becomes to deliver a genuinely person centred approach.

In my opinion providers who are unable to maintain or who have never had, a particularly Person or Family Centred Approach will probably begin to adopt strategies that will allow them marginalise the family. Allowing them to caste their views into the can be dismissed pile. Practitioners have a range of tools at their disposal that allow them to dismiss the views of family members and the Mental Capacity Act has become a particularly useful way of dealing with problematic family members. But it isn’t confined to that.

For those with younger children one of the most effective ways of dismissing the opinions of families was to assert that a parent had failed to adjust to their child’s diagnosis or disability. Parental demands for additional or specialist support – beyond that which was being offered – were clear evidence that a parent hadn’t yet come to terms with a diagnosis. This is seen as particularly in the case of family members who have demanded expensive out of area provision or really outrageous things like – speech therapy. Fortunately the SEND Tribunal and the Courts haven’t always agreed.

But the broader problem is that the consequence of not listening to the views of families isn’t just that a child, young person or adult may not get the speech therapy they need. The problem is that they may not get the support they need when taking a bath. They may not get the support they need to be able to manage their behaviour well enough to be able to keep themselves within their community, and then of course they may not even get the healthcare they need to keep them alive.

Listening and not listening to our community
But the Art of Listening and Not Listening is not just confined to us as individual families. We are listened and not listened to as a community. For generations learning disability was excluded from our society and it wasn’t until the post war period that things began to change at all. As for the voice of families in my opinion this didn’t really begin until Caroline Glendinning wrote Unshared Care: Parents and their Disabled Children in 1983. In the years after that York and a number of other Universities, working in partnership with the Joseph Rowntree Foundation, conducted a stream of research which genuinely listened to the voices of families. At first the focus was on the “burden” of care but with an increasing acknowledgement of the rights of disabled people, the focus turned to the creative ways in which families sought to overcome their challenges in a way that was positive and inclusive. Bryony Beresford’s Positively Parents is an excellent example of how researchers have been able to listen to and represent the voices of families not only as the carers of their children but also as their champions.

Through the late nineties and well into the first decade of the 21st Century, researchers and a good number of practitioners displayed a genuine commitment to representing the voices of families and adults with leaning difficulties. It was a genuine attempt to transform the lives of people with learning difficulties regardless of their age. Eventually this research paid off and in my opinion initiatives like Valuing People, Early Support and Aiming High for Disabled Children reflected some of the positive outcomes that listening to the voices of people with learning difficulties and to their families were able to bring.

The ethos of this process was carried into the work that the current government put into The Care Act 2014 and the Children and Families Act 2014. Families and adults with learning difficulties have been closely involved in both but I believe there is a fundamental difference in the way in which the voices of families in particular have been listened to and used. Whilst far from perfect the policy developed out of the research carried out in the late nineties and early 21st Century, genuinely used people’s experiences and opinions to inform policy development and implementation. In contrast to this the Children and Families Act in particular, has used the experiences of some families far more than those of others and as a result the policy has been skewed toward the interests of those groups within our community who were more active and whose entitlements the government felt more inclined to support.

Well that’s my opinion and we won’t really know if I’m right until we’ve had a decade of children being excluded from schools and of adults not getting the support they are entitled to because the Care Act hasn’t been adequately funded. The problem is that even then we will struggle to know, because most of the people who aren’t getting a decent service or who challenge the practice of providers – will have had their opinions placed upon the can be dismissed pile and the Art and the Politics of listening and not listening to families will have come full circle and the family that can be dismissed has become a community that can be divided, marginalised and discarded.

But it doesn’t have to be like this….

MarkL

StevenN

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.

StevenN

Moon on a stick

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

KRCpic

Week 4: Listening to parents #107days

It’s hard to believe that we’re on Week 4 of #107days already, but we are, and this week we’re hoping to explore an issue that comes up time and again, listening to parents and families. We are hoping to reach new understanding through #107days so if you read this post and it relates to your experience, or perhaps you work in a service and recognise the situation but feel like your hands are tied/ears are blocked, or you completely disagree we would like to hear from you. Please do leave a comment and please also share the post far and wide.

To kick off Week 4 we have a blog post from Katherine Runswick-Cole: The #Motherblame Game

A gut wrenching post from Sara prompted me to tweet last week:

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For mothers like me, the Bettleheim reference is familiar. In 1960s, Bettleheim, a psychiatrist, explained the causes of childhood autism as the result of a mother’s cold and maladaptive behaviour; he coined the term refrigerator mothers. Today Bettleheim’s explanation of the causes of autism has been rejected by mainstream psychology and psychiatry, but it seems that mother blaming is alive and well, living in Oxfordshire, as well as many other places across the United Kingdom. Indeed, the Tweets that fill my timeline suggest that mother blame is rife.

In a time of economic austerity and welfare cuts, you only have to open a newspaper to discover that mothers bear a heavy load. Mothers have been blamed for everything from naughty children, the rise in teenage pregnancies to summer riots. They are credited with the ability (or lack of it) to wire their children’s brains correctly, prevent childhood obesity and to create economically productive citizens. It’s tough being a mother in 2015!

But if you have a child with a learning disability things are tougher still. From the moment that your child strays ‘too far’ from the ‘normal’ developmental path, you are under additional surveillance, as the blame game begins – there will be no escape.

You are simultaneously the problem and the solution. You have caused your child’s delayed development (through your inept parenting or your dodgy genetic inheritance, it’s your fault either way) but, at the same time, it is you who must lead the charge to move your disordered child as close as possible towards some sort of mythical norm. Therapies and interventions replace the simple pleasures of playing with your child “you must make him look at you!

When your child starts school, you find yourself characterised as simultaneously grief stricken and in denial. Your grief makes you unreasonable, tetchy, difficult, while being in denial leads you to make unreasonable demands on the system and on limited resources . You continue to expect that your child should have the same life chances as other children, how could you, s/he is learning disabled!

When your child becomes an adult, you’ve guessed it, you are still the problem. Your low/high (delete as appropriate) unreasonable (no option to delete the ‘un’) expectations will not be met. Your demands for your adult child to have a life like any other: a home, friends, a job, or, even, whisper it now, a relationship, are more evidence of your failure to accept your child’s learning disability. Surely you should be over it by now? Oh, and by the way, as your child is an adult, don’t forget, they must make their own choices, as long as these are compatible with the narrow, zero-aspirational, budget-centred (not person centred) options on offer.

And then a child dies, in the most horrific circumstances, a preventable death, surely then the mother blame game ends there? No. In the aftermath of LB’s death even Mother Nature got the blame in the over hasty claim for death by natural causes. Since LB died Sara has been surveilled, smeared and blamed for the crime of loving her son and seeking justice for him and other people with learning disabilities.

This week The Independent Panel for Special Education Advice stated on its Facebook page that 90% of its followers are women. At the #JusticeforLB event at Manchester Metropolitan University on 26 January 2015, I introduced Steve Broach, the disability activist and barrister, as having 3,000 Twitter followers – all mothers of disabled children (I was only partly joking!). I have been lucky enough to meet many amazing mothers of disabled children. Like Sara, they fight for their children to have ordinary lives and to be seen as fully human. It is a fight they bear with grace and tenacity while living with under the shadow of mother blame.

But this is a fight no mother should have to take up, and certainly not alone. The mothers of the disabled children I have met are all fighting for the same thing, recognition that their child is fully human too with hopes, aspirations, dreams, strengths, challenges like any other human being. As George Julian said at the Manchester event: [the campaign] is not a disability issue. This is a human rights issue. She’s right and through the #JusticeforLB campaign girls, boys, men, women, mothers, fathers, disabled people and non-disabled people, activists and academics, practitioners and family members have come together. Here there is a disability collective, a commons, claiming the human rights of people with learning disabilities.

While the neo-Bettleheimers still seek to blame mothers, in coming together as #JusticeforLB, we must work to build systems, structures, laws or better still, a society, in which people with learning disabilities are truly seen as being fully human too.

KRCpic

Screenshot 2015-04-04 09.06.04

Week 3: Action week #107days

A year on from the first #107days campaign, as another soul-destroying hand grenade gets lobbed over the fence into the Justice Shed, we’ve had to dig deep this week to reconnect with our resolve and find the positive. #JusticeforLB has always been open, honest and transparent, which means it’s fair to say this week has been a bit of a struggle (when you’re effectively gagged from being as open as you’d like you get stuck chasing your tail). There’s a constant balancing act, like walking a tightrope with no end in sight.

We also reached an unusual landmark this week when Chris Hatton published this blog post Wordy CrappinghoodOut of the public gaze Liz has been archiving all the activity related to the campaign over the last year so was able to share that this was the 500th piece written relating to #JusticeforLB

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So where does this leave us? We’re obviously still doing all we can to keep the awareness of what happened to LB, and what continues to happen to so many other disabled people, seen as not fully human, in the public gaze. That said, awareness is not enough. In an attempt to try and keep balance on this tightrope we have been remembering and revisiting some of last year’s #107days actions. The truly magical thing about #107days was the collective response and coming together, people adopting days and taking actions.

We know that we couldn’t come close to matching that again, which is why we’ve structured #107days Take 2 slightly differently. We also know that we are stronger together, and if we want to get the societal change that is needed to fully achieve JusticeforLB and all dudes, then we can make inroads with that, we don’t need to wait for ‘the system’ to progress it. So, this week, Week 3, is our first action week. We’re asking you all to take actions to make the world a better place for everyone. We’ve a couple of suggestions for you below and we’re open to your ideas; you could raise awareness, raise money, or just get on and change something and improve someone’s life (what a fantastic opportunity)!

Action 1: Tell someone about the #JusticeforLB campaign

We know we say this all the time, which is because we can’t say it often enough. We are an amazing collective of truly diverse and wonderful people pulling together for JusticeforLB and all the other dudes, but there is *always* room for more. More importantly if we truly wish to change society we need to bring more people with us – so tell someone about the campaign, write an email, send a postcard, have a conversation in the pub/coffee shop/doctors surgery/church/at a family gathering. Share this #107days blog, or Sara’s blog, or the campaign website, or the facebook page, or the twitter account – whatever works.

Action 2: Go see the Justice Quilt and tell someone about it

We are completely and utterly honoured that the amazing Justice Quilt is on display over the Easter holidays, and up until 22 April, at the People’s History Museum in Manchester. It seems only fair and fitting that LB’s story should reach so many more people, and should be witnessed in history, not hidden and silenced.

Screenshot 2015-04-04 09.06.04

It goes without saying many of us can’t make it to Manchester, much as we would love to see the quilt in situ, so we are asking those of you who do to share a quilt selfie so we can all join in remotely – first to accept the challenge were Chris and Kat:

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Keep them coming #JusticeforLB’ers

Action 3: Host a pop-up #JusticeforLB party

A week or so ago just before the start of #107days we were a little bit broken hearted in the Justice Shed by a couple of tweets that Deborah Price sent. The first of which was this one:

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It turns out Deborah wasn’t alone and others found themselves in similar situations, where either parents aren’t confident/keen/bothered about including all children equally in their child’s parties, or children are picking and choosing and aren’t including all children equally. Who gets invited to a child’s birthday party is largely up to the hosts, we know that, but here in the Justice Shed we can’t bear to think of what it must feel like to be rejected from the fun. We think there should be a better way.

The thing about #JusticeforLB is that we can’t wait for other people to change things, to improve things, to fix things – we believe we have to be the change we want to see.

So, on May 23 2015 we are holding a pop-up party, family day gathering type thang at Lancaster University. It’s early days so we don’t have all the details yet, but we thought we’d share the idea more widely with you amazing JusticeforLB’ers and see what magic you could make happen. We are throwing open the challenge to you all to hold a #JusticeforLB pop-up party. It really doesn’t matter how many people attend, where you hold it, or what you do – so long as everyone is welcome.

If you let us have the details we will help advertise it, you could attach it onto an existing event, you could have a tea party with one or two other people, a large scale community event. We don’t mind and there is no need for it to be on the same date, we would love for 2015 to be the summer of pop-up parties, where everyone is welcome, young and old.

If you’d like to host a party please drop us a line and let us know so we can build up an idea of where and when they’re happening. If you’d like a co-host then let us know and we’ll try to find you someone.

Here in the Justice Shed we’re looking forward to a summer of fun so please don’t let us down!

InquestFunding

Week 2: Exceptional funding #inquests #107days

One of the most astonishing things that we’ve learned since LB died is that families have to fund their own legal representation at inquests while the NHS can draw on the public purse (with no apparent cap to what they can spend). There is something called exceptional funding but we were told, back in those darkest of dark days, that this is almost impossible to get and involves a complicated, intrusive process of lengthy form filling.

We thought we’d have a closer look at this mythical pot of money as part of our Inquest week.

First, there are two criteria to be met before you can think about applying for exceptional funding:

  1. Where it is necessary to carry out an effective investigation into a death, as required by Article 2 of the European Convention on Human Rights
  2. Where there is a significant wider public interest in the individual being represented.

We covered the Article 2 aspect in our first inquest post. The second criteria is a funny old beast and deserves a closer look.

Screenshot 2015-03-31 18.51.35

Mmmm. This left us scratching our heads in the Justice Shed to be honest. If the MoJ are arguing that inquests are inquisitorial processes, why, would there be any situations in which there is a wider public interest in the family being represented? This exceptional loophole is surely recognition that families do really need representation, it’s just they can only access public funding for this if the ramifications go wider than their dead relative. The Lord Chancellor’s Exceptional Funding Guidance (Inquests) adds more detail to this peculiarity by stating that:

Screenshot 2015-03-31 18.55.19

Another big ‘mmm’ for us. The old ‘lessons learnt’ chestnut that Sloven (and others) dust off for most inquests surely can’t be taken at face value? We’ve lost count of how many times Sloven spokespeople have stated they’ve learned they need to start listening to families. And don’t.

Confronting this level of brutal inanity after the unexpected death of a child or other family member is, as you can imagine, the equivalent of having the remaining pieces of your heart tossed into a colander and sprinked with a mix of lemon juice and chilli. It is a fall at the first hurdle jobby.

But let’s just imagine, that someone decides to go ahead with applying for this exceptional funding. They fit the criteria and move onto stage 2. The details of applying for the funding and forms can be found here.

Caseworkers fill in the application. Families just need to open their lives to intense financial scrutiny (21 page form) to have a chance of getting it.

Funnily enough, through all the documentation, there crops up the statement that there is a discretion to waive the financial eligibility limits if, in all circumstances, it would not be reasonable to expect the family to bear the full costs of legal assistance at the inquest. This statement is then mired in some gobbledy gook about the history of the case, the nature of allegations to be raised against State agents, disposable income, capital and financial resources and the estimated costs of providing representation. Eh? In a Home Affairs Briefing by John Bardens (March 2014), it’s stated that families will have to still make contributions if they have over £315 disposable monthly income or over £3000 in disposable capital.

It is hard to understand why families should have to pay for legal representation when their relative has died a preventable death in the care of the state. It is hard to imagine how families, in that context, could possibly bear to go through the process of applying for ‘exceptional funding’. Especially given the State agents can just order in any legal team they want at the taxpayers expense.

How many more hurdles can there be to jump over (or fall face first into) before we get Justice?

InquestFunding