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

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

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:

Screenshot 2015-04-14 07.18.15

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

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:

Screenshot 2015-04-13 00.25.47

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

Day 86: Communication and being human #107days

Day 86 of #107days was adopted by Jenny Morris. Jenny blogged early on in the campaign and has also been interviewed by journalists for a number of pieces that relate to LB. Jenny’s expertise and knowledge is very valuable and today she offers a blog post with her thoughts and knowledge on communication.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that – at a time when so many aspects of social policy and social attitudes are going rapidly backwards – we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

Day86_CommunicationPatch

The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

‘Communication is at the heart of being human’.  Sadly, some people will react to this statement by saying ‘But some people cant communicate and you’re therefore saying they aren’t human’.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call ‘severe learning disabilities’.

Communication is about recognition of a message being conveyed – it is a two way relationship and we should be paying far more attention to the ‘recognition’part of the relationship.  Instead of saying ‘he can’t communicate’, we should be saying ‘I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do’.

How many times have you heard someone say (as I heard only a few days ago):  ‘X has severe learning disabilities and can’t communicate at all. She loves swimming and lots of different kinds of music’? My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s ‘challenging behaviour’.

The statement is both a denial of the human right to communication and – ironically – at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person ‘doesn’t communicate at all’.[1]  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know – he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme. It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you ‘scream and shout’?

One of the things I try and do with most of the posts I write is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past. Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: ‘We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK’.

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties.[2]Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described – in another publication from 20 years ago – as dominated by an Apollo culture[3]:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role. Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.

These organisations cope well with stability but struggle to deal with major change. There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination – there are many examples of this but Mark Neary’s experiences are just one.

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences. We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a ‘ninja task force’ which puts people with learning disabilities and families in charge and works to ‘develop local, individual supports for people moving out of these services’. A key issue will be the availability of housing – though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision.

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties.

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

[1] Morris, J. 1998. Still Missing? Vol 1: The experience of disabled children and young people living away from their families. The Who Cares? Trust.

[2] Wertheimer, A. ed. 1996. Changing Days: Developing new day opportunities with people who have learning difficulties. The King’s Fund.

[3] Sanderson, H. et al. 1997. People, Plans and Possibilities: Exploring person centred planning. Joseph Rowntree Foundation.

Day 78: Pass it on #107days

Day 78 was adopted by Rachel Batchelor, we’ll let her introduce herself:

I’m probably best described as a ‘vocal service user’ though I have been called many other things (‘engaged and forward thinking’ was the nicest, though anything from and ‘warrior parent’ to ‘un-necessarily awkward’ via ‘overly academic’ and ‘unusually well informed’, with side orders of ‘stressed’, ‘over-complicating’ and ‘fussy’, not to mention ‘attention seeking’ and my all time favourite ‘probably bored’ (Seriously? if ONLY I had the time).

I’m  sure you get the picture, maybe its one of those nice little snap shots that so many of the pros mention. You know the kind of thing ‘I just need a snap shot of things for the file’, one taken when they flit in and out of peoples lives, creating paper work and often not much else.

One of the places I get my ‘unusually well informed’ perspective from is a long relationship with the Tizard Centre. As a result I often read blogs and articles posted on the group facebook page, a useful weather eye on what’s-what. It’s where I first read the My Daft Life blog, and the awful chain of events described there.

As has been said by many others in the past weeks, we get used to things being crap. It comes from having to hit the ground running and deal with other people’s system failures, organisational re-structuring, policy shifts that change with the wind direction, endless blah-blah chains of words which acknowledge little and promise less, ‘the usual’, all while trying to manage complexity and just get on with things in general. Even with the whole ‘used to things being crap’ as a starting point, the story of LB and his family is so shockingly dreadful that I find it hard to articulate my response. I don’t usually join protest campaigns, but this one is different.

This is what Rachel has been doing:

I offered to raise awareness of the campaign by discussing the case with 107 people and to ask each of them to discuss it with at least one other person, to pass it on. It has resulted in some complex conversations, some brief discussions, and one or two people who simply stared in disbelief that a death had occurred in specialist setting, how? HOW? could such an awful event be possible? Several people queried how it was possible, given Winterbourne View that things were still so bad (I still can’t give a coherent or printable answer to that question). One or two friends who had seen press coverage of LB’s case said that they were struck at how similar the various systems failings were to other cases they knew about, though thankfully those cases are without fatality.

All in all an interesting set of conversations which fell into two broad groups, those who felt shocked that something so appalling has happened and those who quietly reflected that the deeper shock is, the realisation that it is remarkable that it doesn’t happen more often. That gives pause for thought, doesn’t it?

I was lucky enough to raise some of the issues in the campaign with a group of students undertaking specialist training in Autism. I tried to illustrate my points with some of our own experiences, to draw a parallel with how easy it is to ignore family expertise, the corrosive effects of professional turf wars, and how much time and resource is spent getting things wrong. How much energy is spent making parents and families ‘the problem’ while over simplifying the needs of the person at the centre. One of the questions we get asked most, is ‘and what single thing do you think is most needed? hmmmm?’ to which the only polite reply has to be, ‘for people to stop thinking there is a single answer’.

If though, for the sake of argument, I could try and focus on a single ‘what is needed’ issue, here it is. Communication. Why is it that those who are willing to learn fluent jargon (specialist terms for communicating with colleagues) have no sign language or PECs (specialist skills that can be used in many circumstances). Working with a client group who are at the very least, likely to have communication difficulties would seem to call for good and useful communication skills. So, my one simple idea is could all professionals learn to recognise and accept communication differences and move on? The training exists, PECs, Signing (BSL, Maketon), Somerset Total Communication are well researched and available. How many challenging behaviours are due to communication issues and fear?

It may, also help all those involved in a persons care to LEARN TO LISTEN whether that’s to families, colleagues from other disciplines, and importantly, to the person at the centre. Fill in those partial snap-shots into something more coherent.There is no single simple solution to complex situations so at least acknowledge the complexity. However we do know what doesn’t work and we do know what does work, Jim Mansell wrote it all down in clear, informed language for all to read. So maybe, here’s another simple idea, read the Mansell report and just implement it?

We might be used to things being crap, but there is no reason why we should accept that as an unchangeable situation. Please pass it on.

Rachel also pointed out that as the D-Day commemorations happen this week it is probably as good a time as any to revisit the Universal Declaration of Human Rights, the global response to the horrors of two World Wars, the document which ultimately underpins all our equalities legislation. Rachel’s view was that more people should read it, especially Article One, which states ‘All people are born free and equal in dignity and rights’.

Right to Life

I completely agree with Rachel, but you really need to read the whole thing, and Article Three would appear quite relevant to much of social care and health support for people with learning disabilities, more on that from Lucy Series here. Now, don’t forget Rachel’s request and please Pass It On.

Day 76: Airing views #107days

Day 76 was adopted by Aisling and the team at Certitude who provide personalised support for people with learning disabilities, autism and mental health needs. It is worth acknowledging that when we started #107days a number of organisations rather tentatively got in touch.

Some decided not to publicly support the #JusticeforLB campaign, some decided to adopt a day but then cancelled (presumably when it became clear that we were not afraid of challenge or questioning the establishment) and some stayed the course. We are delighted that Certitude were one of those who adopted a day and have embraced the spirit of openness, transparency and learning that is so key to the #107days campaign.

Here’s why they are supporting #107days and #JusticeforLB:

At Certitude we were truly saddened to hear of Connor’s death and our thoughts are with his family and friends. As an organisation supporting people with learning disabilities and those who experience mental ill-health, we work to enable people to lead happy, rich lives. It is vitally important to us that it is the people we support who define what a good life is for them, and that they are able to express this. That Connor and his family felt marginalised, isolated and unsupported by the care provided makes organisations such as ourselves surely question the care we provide.

We were shocked to hear about the circumstances surrounding Connor’s death. That it was preventable has rightly made us look more closely at the support we provide: Are we truly doing the best we can for people who have epilepsy? How do we best support people, involving and learning from them and their families? How do we make sure we engage with all the services which provide support to people with epilepsy? As an organisation, we didn’t want to sit on our laurels. We wanted to use this terrible event as an opportunity to discuss whether we are providing the highest level of care and support to people.

This is what they’re doing with their adopted day:

On Tuesday 3rd June, we are holding an internal round table session to reflect on what lessons can be learnt from Connor’s death and to address how we best support people with epilepsy, balancing both safety and independence. Another focus of the discussion, which was sadly lacking in Connor’s case, is how we can ensure families are central to the support we are providing to their relative.

Day76Certitude

Chaired by myself (Aisling, their CEO), we will be sharing ideas on how can we ensure the support we give people with epilepsy is right for them, so we can we offer people the best possible care we can. We’ll be hearing from staff within Certitude working directly with people with epilepsy, as well as a family member who has a son with epilepsy. It will be an informal occasion where people will have the opportunity to air their views, whether positive or negative. I’m really hoping it will be an honest and productive discussion, where we will learn more about  challenges and issues , and explore ways we can increasingly work in partnership with people we support, their families and other professionals. We’ll also be showing the ‘Here comes the Sun’ film about Connor at the event and will be posting updates via Twitter during the discussion to continue to raise awareness of the #107days campaign.

At Certitude we strongly believe everyone has the right to a good life and receives the care and support they need to achieve it. We are wholeheartedly behind this campaign and hope that out of this tragic event there will be lessons learned far and wide to ensure it does not happen again.

We are confident that Certitude will have a great day, with a positive environment where negatives can be discussed as freely as positives and the focus is on what’s really important, supporting people to have a good life. We really hope that other people follow their example.

Day 69: The importance of listening #107days

Day 69 was adopted by Lois. She got in touch because she felt that some work she had been involved with around communication was relevant to #JusticeforLB and the way that people with learning disabilities experience the health service. This is what she had to say:

It is completely unfair that after decades of trying to improve services for people with learning disability , closing the long stay hospitals , bring in person centred approaches, we are left in 2014 with the huge inequalities in health and life opportunities for people with learning disability and life’s like Connor Sparrowhawk are cut short in an unnecessary and untimely manner .

How many more tragic deaths are we going to see before residential services for people with learning disability are going to change? We need to see at the heart of that service culture an ability to really listen and put the views of the patient at the heart of planning and see the families as key partners. Sometimes I think people see listening as a ‘soft issue’. Other things get measured but does the quality of listening ever get measured? It should because in my view it is a critical patient safety issue.

Over the last few years I have had the privileged of working with a diverse group of people with a range of communication support needs. They have developed an interactive workbook for NHS Education Scotland. They share their experiences of contact with services to help staff understand how to improve communication and listening skills.

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The group deciding on the key visions

They created 10 vision statements for staff of the things that were key to them. They told powerful personal stories to illustrate those statements. The stories illustrate both good and bad practice. You can download the free resource here.

Listening to people what strikes me time and time again is the lottery of service delivery. There are some great stories where people have received quality treatment and interaction but that is not universal for there are stories where you are left questioning the compassion and humanity of staff in so called ‘caring’ roles. The question for all of us is how we shift the culture so that we can all experience a person centred and listening health service. I hope the energy and impetus of #107 campaign ignites the flame of change so that ‘all dudes’ gets a safe and quality service.

Day 48: Speaking up and speaking out #107days

Day 48 was adopted by Angela Broadbridge, a special day for her family as it’s her daughter’s 2nd birthday. This is what she had to say about why she is getting involved and supporting 107days:

I started to follow Sara’s blog way back when she was talking about what a good life would look like for Connor; a fellow social researcher unpacking the big issues around disability; how heartbreaking to read of his death in July 2013, I felt as though I knew LB and his family, knew the direction in which they were headed.

I asked to adopt day 48 of #107days because it’s my daughter’s birthday, I have a strong interest that she develops a desire to tackle issues of social (in)justice and so it seemed an appropriate way to focus my attention. I have spent much of my working life campaigning for the availability of independent advocacy, but in doing so realised early on that my job was not just to promote services and seek funding, but to challenge the practice that advocates see in their day to day work.

Angela has written a brilliant blog post reflecting on her work around advocacy, she introduces her learning from her first ever self-advocacy workshop and explores the themes around people engaging but not being heard. She reference’s Sara’s colossal attempts to advocate for LB:

Sara’s blog posts and responses to the independent investigation into Connor’s death make one thing so obvious – I can practically hear her shouting loud and clear about his epilepsy, seizures, about her rights, LB’s rights – here was a voice that was not being heard.

Angela’s post goes on to discuss this common theme, of not being heard, in relation to current policy and practice environments, and offers her own suggestions for what would make a positive difference. I’ll give the final thoughts of this post to Angela:

The NHS Constitution is supposed to extend in law a right for patients and their families to be heard. This is not a document to be referred to only in case of complaint but to be woven into practice, especially at the harder end of care. We need to see it given teeth, with a robust evidence base to monitor its application, and it needs to hold the same importance for practitioners as clinical guidelines do.

Please take the time to visit Angela’s blog and read her post.

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