Capacity, Consent and the Rightfullives Exhibition.

(There is a link to an easy read version of this blog at the bottom of the page)

Have you ever wondered why there is so little research involving adults with “severe” learning disabilities? In fact, have you ever wondered why there is so little of anything involving people with “severe” learning disabilities. It’s not because they don’t have anything to say or the need to have their lives understood or shared, it’s because it’s not straightforward. The capacity and capabilities of a person with “severe” learning disabilities often exist beyond the shared codes and understanding of our everyday language. For most of us language is the means through which make sense of our world and the way in which we consent and approve of the things we have done and the things that are done on our behalf. Having language as an easily accessible medium through which to represent our capacity and consent, is a cornerstone of our ability to lead a rights-based life.  But for a great many people with learning disabilities this over reliance on everyday language as a means of illustrating their capacity is discriminatory and plays a significant role in excluding the “voice” and presence of people with severe learning disabilities and/or autism from everyday life.

A few years ago, we had to make a decision about whether Mikey should continue going to college for four days a week. Without going into too much detail about the situation, a number of people in his life felt that it was in his best interests to go for four days a week, whilst he seemed to be finding college increasingly stressful and seemed to want to stop. I think he was about 19 at the time and the problem with the situation was that most people in his life felt that he lacked the capacity to make the decision for himself and that as a result of that apparent lack of capacity the decision could be made for him and that it was therefore reasonable to expect him to live with the consequences of that decision.

The challenge for all of us, but in-particular his social worker, was to make a judgement about whether or not Mikey had the capacity to understand the choices that were available and to make the decision for himself. The social worker’s judgement was complicated by the fact that Mikey would say different things to different people depending on what it was he thought they wanted him to say, something that I was reminded of in a recent blog by Mark Neary. And it is worth noting that Mikey also has different expectations about his freedom to express his own choices depending on his environment and the people he is with at the time.

So, we had to look beyond the inconsistent use of language and to make a judgement about whether or not he understood the practical implications of what college was, and whether or not he had a good enough understanding of time in-order to make a decision about what was meant by going to college for 4 days. In keeping with the principles of the Mental Capacity Act we used an alternative form of communication to support Mikey in being able to express his choice. Because whilst his use of the spoken word can be inconsistent, his use of text and image is far less so. So, drawing on the understanding we have of the way in which he communicates, as-well as Mikey’s skills in using information technology we agreed to develop a simple PowerPoint animation that would allow Mikey to express a preference for the choices that lay before him in a way.

In the end Mikey was able to express his preference to all of us and didn’t go to college for four days a week. But if his social worker had adopted an approach similar to that which had been employed in Steven Neary’s recent DoLS assessment then it is likely that a formal best interests assessment would have taken place and it is equally likely that it would have been judged to have been in his best interests to go to college for four days a week.

This is just a small example of why thinking creatively matters when making decisions about a person’s capacity to make their own decisions. It is why the knowledge and understanding of the people who know a person best is so important when assessing a person’s capacity. It is also why the issue of consent can sometimes be problematic.

Rightfullives

We are currently working on how to manage the issue of consent for the Rightfullives.net exhibition. We have developed a consent form for people who have no difficulty in understanding written text and we have created an easy read version for people who prefer a more visual approach, but who nevertheless have the capacity to decide for themselves whether or not they want to take part in the exhibition. But what about people who may or may not have the capacity to decide for themselves? How do we encourage and manage the participation of people whose capacity to choose and to consent may be as nuanced as Steven and Mikey?

I am currently thinking of submitting some of Mikey’s photos to the exhibition as a stop-motion video. When I ask Mikey if he wants to take part, how I ask him will have a significant effect on the likelihood of him being able to make an informed decision and the kind of answer he would give. There are a number of ways in which I could approach the issue:

1.       I could simply say something along the lines of: “Mikey would you like some of your pictures to be used to make a stop-motion video for an online exhibition about the human rights of people with a learning disability”;

2.       I could create an easy read invitation asking him the same thing

3.       I could break the process down into its components and then get his permission to do each element at the time that each decision needs to be made.

I’m pretty sure that neither of the first two approaches would be successful in helping Mikey to make a decision, so I’ll probably opt for the third approach. Which as I see it would involve four stages.

The first stage of co-producing Mikey’s exhibit would be to select a number of his photographs and use them to create the beginnings of a very simple stop-motion video. So, I would put a small selection together and show him what I was doing. If he approves I’ll continue if he doesn’t I’ll accept that he does not want me to take his photos and use them in this way.  Let’s presume he’s OK with the idea.

The second step would be to encourage his involvement in selecting the images that we are going to use. There may be some that he would be perfectly happy to use and others that he wouldn’t. For example, I would be very surprised if he were to select an image of him, although you can never say never.

The third step would be to ask him if he likes the final exhibit. If he does I’ll upload it to the exhibition space.

The fourth and final step would be to test to see if he is happy with viewing it online and if he is, he and I will be displaying an exhibit in the Righfullives Exhibition.

The principle behind deconstructing the consent process in this way is that it makes understanding what taking part in the exhibition means in a way that is less dependent upon formal language. For Mikey the process of taking part in the exhibition will be broken down into concrete steps and his participation will be dependent upon him consenting to each step.

There are issues with adopting this approach. Some may well argue that Mikey is being led from one step to another and that whilst he may have the capacity to make a decision about each element, this doesn’t mean that he understands what taking part in an exhibition actually entails. And they may well be right which is why, at each stage I would not only be asking him about whether or not to participate in each step, I would also be making a judgement about whether or not his participation is in his best interests. In this way he is not being compelled to take part in something he doesn’t want to take part in but at the same time a judgement is being made about whether or not a decision is likely to cause him harm.

This is just one example of one approach to the issue of consent. As a collective we – the people who are pulling together the Rightfullives exhibition – do not have a set of guidelines stating how you should or should obtain the consent of all involved in the production of the exhibits that you submit; but we do expect you to have used your understanding and insight, to do your utmost to involve people in the co-production of exhibits and in obtaining consent. And where this is in doubt, we expect you to do your very best to ensure that a person’s participation in the exhibition is ultimately in their best interests.

(Click on the link to download an easy-read version of this blog in Word.)

Capacity Consent Rightfullives Easy Final

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The cost of life and freedom

I was going to blog about Winterbourne View. As I start writing this, it’s 7 years since the programme was broadcast and it seems like more. I’d probably have gone on about how Transforming Care isn’t delivering anything like what it promised and how trying to change a system that costs £1.2 billion a year with £30 million spread over 3 years is like trying to turn around a super-tanker with a rowing boat – an exercise in futility. The problem is that most people don’t care and those that do already know that Transforming Care isn’t delivering. I guess the question is, in the context of that failure and in the dark half light that has followed the publication of the Learning Disability Mortality Review where do we, the people who want things to be different, go next? Is it time to do what Neil Crowther has suggested and to change the way in which we talk about learning disability – focusing more on solutions rather than personal stories of struggle – or should we agree with those like John Lish who argue that Transforming Care needs to be given more time to deliver and that it is too early to write it off. The problem is that people with learning disabilities aren’t locked up because of the way in which we campaign to get them home and nor are they dying so many years younger than their peers because government policy hasn’t been given time to bed in, it’s about politics, economics and the cost of life and freedom.

In a recent report Securing the Future published by The Health Foundation and the IFS it was shown that:

“over the last eight years health spending has grown more slowly than in any comparable period since the NHS was founded.”

That:

“Across the UK as a whole, public spending on adult social care fell by nearly 10% between 2009–10 and 2016–17”

And that:

The burden of disease is also increasing. The number of people living with a single chronic condition has grown by 4% a year while the number living with multiple chronic conditions grew by 8% a year between 2003−04 and 2015−16. Looking forward, more of the UK’s population will be living with a chronic disease and very many with multiple conditions. This is because while life expectancy has been increasing, healthy life expectancy has not kept pace and the period of people’s lives spent in poor health has increased; particularly for the poorest. As a result, without major progress on the vision set out in the Five Year Forward View, over the next 15 years spending in acute hospitals to treat people with chronic disease is expected to more than double.

All of this whilst the government remains committed to maintaining the country’s position as a relatively low tax economy. A key component of that low tax commitment has been the drive to reduce expenditure and improve productivity in areas where government spending is high. This has meant cuts to social care and welfare spending and minimal growth in health spending despite rapidly increasing demand.

The combination of increased pressures on budgets, a political commitment to a low tax economy and a commitment to increased private sector involvement in the delivery of NHS services has created an political and economic milieu that makes it almost impossible to deliver a significant transformation in the lives of people with learning disabilities. How can a government tell a Doctor that they need to spend more time on their appointments with people with learning disabilities when they are also telling them to see more people for less money. How can they tell a local authority that it has to invest more on intensive support in the community when they are also telling them that they have to cut spending by tens of millions and the contradictions don’t end there.

Within health the drive to improve productivity has gone hand in hand with a growth in the role that for profit private sector providers have come to play in the provision of services.

Spending on private sector mental health service providers (mainly in-patient care) increased by 12 per cent (£126 million) between 2010/11 and 2012/13, while spending on mental health services provided by NHS bodies fell by 2.5 per cent in real terms (£17 million) over the same period.  

https://www.kingsfund.org.uk/projects/verdict/nhs-being-privatised

The rationale behind increasing the role of private sector is simple, excess capacity in the private sector doesn’t have to be paid for (at least not directly), whereas excess capacity in the public sector does. It is theoretically far easier to make the money follow the person as they move from inpatient setting back into the community. The theory is fine but as we argued in “A Trade in People” the decisions of the private sector have to be driven by the needs of their businesses. Directors are required to act in the interests of their shareholders and decisions that are made in the interests of a business aren’t always easy to reconcile with the needs of the people who use a service.

Nevertheless, the government has attempted to put more funding into CCGs as part of Transforming Care. According to a Freedom of Information request that I made last year NHS England is expecting to spend £66 million less on specialist commissioned beds and it is envisaged that the funds released will then be made available to CCGs to support their spending on community support and infrastructure. If NHS England meets those targets, then most but not all Transforming Care Partnerships can expect to see a rise in funding made available to their CCGs to spend on community support.

Whilst the NHS England data seems to be good news it is important to remember that this funding only becomes available to CCGs after specialist commissioned beds have been closed and the commissioning authority is no longer paying for the previously commissioned service. So, the bulk of the work that is required to get people out of hospital is technically unfunded. In some cases, this may not matter but for a great many people an enormous amount of work needs to take place for the transition from inpatient hospital to community to take place. Aspects of this were raised in an excellent report produced by  VODG (Voluntary Organisations Disability Group) – Transforming Care the Challenges and the Solutions which made the following recommendations.

These give some insight into the complexity of the work that is involved in the process of getting people out of this kind of provision. If you add to that the clinical work that needs to be done in supporting the individual and the support that should be being provided to families and friends (and which isn’t), it is clear that the missing piece of the government’s Transforming Care master plan has been the lack of sufficient up-front investment in the work that needs to be done, to get people home and to keep them there. The £30 million of transformational funding is a fraction of what the 48 Transforming Care Partnerships needed to get this work done. Many didn’t receive any funding at all and having read most of the original plans, I’m pretty sure that none received all of the funding that they bid for as part of those plans.

Most of the original Transforming Care Plans were written in good faith and with the horror of Winterbourne View very much in mind. Most involved extensive consultation with local communities and a significant amount of work. The decision not to properly fund those plans was political and economic just as the decision not to properly implement the recommendations of CIPOLD was political and economic – there is a cost to the lives and freedoms of learning disabled people that central government simply isn’t prepared to pay.  So, when NHSE and the Department of Health and Social Care start blaming everybody else for the lack of progress on Transforming Care and for the high mortality rates for learning disabled people remember that if they had wanted these targets to be delivered – they’d have funded the work.

I guess I did end up blogging about Winterbourne View after all.

Lethal neglect and active inaction – government policy and the premature deaths of people with learning disabilities.

In the first half of the last century, institutions in the state of Illinois implemented a policy of “lethal neglect” as a way of dealing with people with learning disabilities. At a time when the eugenic movement was at its most popular and when the world economy was in crisis, people with learning disabilities were seen as not properly human, a burden, and as a waste of resources. And across the world politicians looked for a range of ways to save resources and to deal with the what they saw as the problem of learning disabled people. The practices of the Nazi Euthanisia programme are well known, but the seemingly less draconian measures adopted by other countries are less well documented and the thing that many of them have in common is the role that neglect and inaction plays as an expression of a government policy.

The policy of “lethal neglect” practiced in Illinois involved deliberately infecting people with the tuberculosis virus and then failing to treat them for the disease when they became ill. So, in this form of “euthanasia” the deliberate act of infecting people with learning disabilities was coupled with a deliberate act of neglect, hence the reason that it is seen as one of the most active forms of lethal neglect and it is unsurprising that the death rate in these institutions rose to between 30 and 40%.

A less obvious form of lethal neglect was practised in England between 1914 and 1918. Shortly after the outbreak of the First World War, many of the England’s asylums were cleared so that they could be converted in hospitals for wounded soldiers. It is not totally clear where all of the people who had lived in the asylums went, however it seems that the majority were simply crammed into the remaining asylums. The resulting over-crowding and deliberate reductions in the amount of food being given to patients meant that the people living in the asylums were far more prone to infectious diseases and by the end of the war over 17,000 people are estimated to have died from a policy of deliberate overcrowding and malnourishment. Whilst this policy was more passive than the lethal neglect practised in Illinois, in that it didn’t involve the deliberate infection of patients, it did lead to a massive increase in the death rate from around 10% before the war to 20% in 1918 and whilst influenza did play a small role in that increase most of the additional deaths were from tuberculosis.

During the Second World War in occupied France, malnourishment and starvation played a role in the deaths of over 40,000 people in psychiatric hospitals. There has been a significant amount of debate in France as to whether or not these deaths amounted to what Max Lafont described as “A gentle extermination” and an act of deliberate policy on the part of the Vichy government, or whether they were simply an inevitable result of the German occupation. The differing death rates in some other occupied countries would indicate that this latter cause is unlikely to be case and that if the deaths in France were not a kind of “gentle extermination” they were at least another form of a policy of lethal neglect. But these stark expressions of neglect are not the only forms of lethal neglect that can prove fatal to people with a learning disability.

In England in 2007 Mencap published a report written by Beverley Dawkins entitled Death by Indifference, it told the stories of six people who had died as a result of what Mencap claimed was institutional discrimination. These claims would be investigated by the Health and Parliamentary Ombudsmen whose findings would be published in Six lives: the provision of public services to people with learning disabilities.

The Six lives report would not uphold Mencap’s claim that Mark Cannon, Warren Cox, Emma Kemp, Edward Hughes, Martin Ryan and Tom Wakefield had died as a result of institutional discrimination, it did however state:

Our investigation reports illustrate some significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care.

Our investigations found maladministration, service failure and un-remedied injustice in relation to a number, but not all, of the NHS bodies and local councils involved. In some cases we concluded that there had been maladministration and service failure for disability related reasons. We also found in some cases that the public bodies concerned had failed to live up to human rights principles, especially those of dignity and equality.

March 2009

These findings mirrored those of the Sir Jonathon Michael Inquiry into the issue of access to healthcare for people with learning disabilities, which published its findings in July 2008. It found that “people with learning disabilities have higher levels of unmet need and receive less effective treatment” (Healthcare for All, p.7) than other people, despite the fact that a range of legislative safeguards were in place that should have prevented this.

So just to clarify the timeline on this. The issue of premature deaths in the UK was raised by Mencap in 2007. The government’s first response to this was Healthcare for All (July 2008). Which was then followed by the Six Lives Report in 2009. The findings of all three of these reports then led to the establishment of the Confidential Inquiry into the Premature deaths of People with Learning Disabilities which reported its findings in March 2013 – between 8 and 10 years after the deaths of Mark Cannon, Warren Cox, Emma Kemp, Edward Hughes, Martin Ryan and Tom Wakefield.

The Confidential Inquiry’s remit was to explore the extent to which the findings of Death by Indifference and the Six Lives Report were replicated on a larger scale and when it reported in 2013 its own findings were stark:

Of the 238 deaths of people with learning disabilities for which agreement was reached by the Overview Panel, 42% were assessed as being premature. The most common reasons for deaths being assessed as premature were: delays or problems with diagnosis or treatment; and problems with identifying needs and providing appropriate care in response to changing needs 

CIPOLD p3.

The Confidential Inquiry should have led to concrete action that would have made a difference to the lives of people with learning disabilities. It didn’t but what it did lead to – was more research in the form of the Learning Disabilities Mortality Review Programme or LeDeR and yesterday the programme published its findings for the year 2016/17. In it stated that 28% of people with learning disabilities would die before they are fifty and from other data published in a blog by Chris Hatton we know “that people with learning disabilities live, on average, lives 15-20 years shorter than other people”.

Perhaps the most significant revelation from the LeDeR Report was how little of it will really have surprised anybody who had read any of the earlier reports. The data was perhaps slightly more depressing than we might have hoped for but as Sara Ryan put it in her interview on BBC Breakfast –

My anger is about the fact that we know this happens, we’ve known that this has happened for a long time now and nothing is changing and what we are effectively saying now is that the label of learning disability for any kid is the equivalent of a life limiting illness. And learning disability isn’t a medical condition. The kids aren’t sick.

Sara Ryan 2018

The truth of it is that the five years between 2013 and 2018 have been a missed opportunity on the part of the last two governments. Commissioning yet more kick it down the road research, at a time when it was clear that what was needed were greater rights to equality of access to healthcare, greater investment in-order to deliver those rights and as Sara pointed out the implementation of recommendation 18 of the CIPOLD Report and the establishment of a National Learning Disability Mortality Review Body. But that didn’t happen and instead the government implemented a policy of active inaction – the appearance of doing something about a problem – knowing full well that it wouldn’t change a thing. And because of that quite deliberate policy choice, in those 5 years; hundreds, perhaps thousands of people with learning disabilities will have died as a result of what is effectively – a subtle form of lethal neglect.

People have accused this government of organisational discrimination toward people with learning disabilities, perhaps it is, but personally I think it’s far worse than that.

Mencap and a million voices of learning disability

I’ve recently changed my mind about something important and I can’t decide if the reason I’ve done that is because I’m being flaky, or if its because a situation has changed and after a careful review of this new reality I’ve come to a different conclusion.

Well the conclusion I’ve come to is that Mencap, in its current form and structure and with its current leadership, is no longer likely to play a significant role in improving the life chances, rights and well-being of people with learning disabilities in the UK. Now don’t get me wrong, Mencap and the people who work for it do a lot of very good things, I believed that before I changed my mind and I believe it now. But strategically Mencap has navigated itself into a position of dependency on the government and in doing so has become powerless to advocate for any kind of meaningful change. There are two issues in particular that underpin this dependency: the first are the massive cuts that have been made to social care budgets; the second is the sleep in crisis and the government’s unwillingness to come up with a solution.

A small but important and very personal example of the impact of the cuts was seen today in testimony to the Tozer inquest, where a local authority social care manager stated that they believed that the impact of staff shortages usually expressed itself in a reduction in the number of activities available to the people using a service. This small piece of anecdotal evidence dovetails with national data on social care funding. The chart below illustrates the gap between help needed and help received for people aged 65 and over according to income bracket.

It is important to acknowledge that this data is not specifically people with learning disabilities and that the activities that this covers only include key daily living activities such as bathing, eating and dressing. However, it gives an indication of the pressures on social care departments and so, it is perhaps unsurprising that the social care manager giving evidence at the Tozer Inquiry was quite as sanguine as they were about cuts to people’s daily activities.  This is in contrast with the Care Act 2014 which states that an authority has a responsibility to promote an individual’s well-being:

Evidence of the scale of the social care cuts is also found in the reduction in the numbers of people in receipt of a service.

The key figure there is the stark statistic, that between 2005/6 and 2013/14, there was a 27% reduction in the number of people receiving social care. Again, this data doesn’t specifically relate to people with a learning disability but it does include them. And we have to ask ourselves – how many people with learning disabilities are included in this figure? What impact have these cuts had on their lives and in the context of the requirements of the Care Act, how many have had their well-being damaged by them? Even for those who have been assessed as qualifying for a service, the impact of the cuts to social care funding and the gap between identified need and available funding is increasing rapidly as the graph below shows.

It is in this context that we need to place Mencap’s exposure both as a provider of social care services that are systemically underfunded – a situation that is projected to get far worse – and as an organisation that has had to go to the government with a begging bowl because of the liability it has incurred over the sleep in crisis. So, it is perhaps not surprising that in its Annual Report for 2017 the CEO and the Chair of the Trustees choose to focus on other stuff:

It is probably worth noting that whilst 7,500 is a lot of people, there are estimated to be over 1 million people with a learning disability in the England – so in “an incredible year, and a huge step forward as we fight for inclusion” Mencap assisted less than 1%. So, I think it is fair to say that the idea that Mencap is the voice of learning disability is hyperbole; there are over a million learning disabled voices in England and no single organisation can reasonably speak for all of them.

The Mencap report for 2017 goes on to outline just how important the sleep-in crisis is for the organisation.

The brutal reality of the sleep-in crisis is that the government is using it to keep many of the big campaigning charities in line as it continues it’s assault on our social care infrastructure.

To some extent the same is true of the cuts to social care budgets. As central government and local authorities continue to cut and expect more for less, providers become complicit in the pretence that a person’s well-being is undamaged by their combined failure to properly implement their responsibilities under the Care Act. To be fair, it is not just Mencap that has allowed itself to get navigated up a very smelly creek without a paddle. By allowing themselves to become as dependent as they have on government, most of the big charities have compromised their independence – one the key requirements for their success as campaigning organisations.

The nett effect is that politicians are able to stifle resistance to their political agendas. They can sustain the pretence that there is such a thing as a social care infrastructure on the cheap and that the well-being of people with learning disabilities has not been profoundly damaged by their actions. Because the organisations best placed to challenge them are in bed with them, trying to keep them sweet.

As for whether or not I’ve changed my position on Mencap because I’m flaky or because I’ve responded to a changing situation – who cares – it’s probably both.

A More Radical Plan

Over the last twenty four hours I’ve read a number of things that have made a deep impression on me. The first has been more of George Julian’s live tweeting. This time from the Tozer Inquest. As ever it has been profoundly insightful and revealing. It has also been a quite awesome feat of concentration and hard work. I found it exhausting just reading the tweets as they came in live. So massive respect to George for that.

One of the themes that has become apparent in George’s coverage of the inquest, and something that struck a chord with me and I suspect most of us, was how often families have to encourage providers toward a better understanding of their loved one and how often we have to advocate for the right support, whilst at the same time running the risk of being labelled difficult and problematic. And what happens once that happens? Chris Hatton summed it up powerfully when he tweeted:

“Reading @TozerInquest live tweets, thinking that if you’re a parent or a family member, if you’re a person with learning disabilities, who can you turn to? Who can you trust? Who can you rely on?”

The sad truth is that when the voice of learning disability has embedded itself within and become an integral component of a system that is barely fit for purpose and which in many cases actively undermines the rights and well-being of people with learning disabilities; then families really do seem to have no organisation that they can turn to. So, it’s not surprising that a number of experienced social workers tweeted their concern this morning.

The problem for social work is that too often social workers are put in positions where they have to defend policies and gate-keep budgets that are unfit for purpose and quite simply too small to allow them to be able to do their work without compromising the principles of their training or if they were brutally honest, their professional standards. Directors of adult social care may complain about budgets, but more often than not they will tow the government line and pretend that they are still somehow managing to meet the needs of their communities and they are not putting people’s lives, rights and well-being at risk.

Other agencies are equally complicit. The live tweeting of the Tozer Inquest yesterday made plenty of references to the quality of care and of care planning, and how the family had or hadn’t complained about one thing or another – but I don’t remember a meaningful reference to the CQC. Somehow it seemed that it was the family’s responsibility to monitor the quality of the service that was being provided to their son.

As Chris said – who can you turn to? Who can you trust? Who can you rely on? Especially if the principles of a rights based social work are being compromised by austerity, if the CQC has neither the resources nor the powers to properly monitor the quality of social care and if the charities who are supposed to be fighting for rights of their communities have enmeshed themselves within the system that is compromising people’s right.

The answer or at least the seeds of it, can be found in another tweet that I read yesterday and that unsurprisingly comes from Sara Ryan –

Well the tears keep tumbling. Maybe we may all get somewhere…

And therein, I think, lie the seeds of a different kind of future for people with learning disabilities in our country

 Maybe we may all get somewhere…

And Sara is right maybe all of us together can get somewhere. Because the key to change lies in all of our stories and in the moments of truth and reality that there are in them. So that politicians can no longer hide behind the rhetoric of their press releases and the illusions that they pedal. Whether you are a person with a learning disability or autism; a family member; or a practitioner who is committed to rights-based practice; your story holds the key to changing the current system from what it is now to something that will genuinely uphold and defend the rights of our community.

All we have to do is to create the ways for you to tell it in a format where it becomes evidence not opinion. 

 

The conversations at the end of a day

For me, one of the most insightful things about a day, is how it ends. Or to be a little more specific it’s the conversations we have, with the people we love, before we go to sleep. And to be fair sometimes these conversations are just a few sentences or even a text, but have you ever noticed how often they reflect our take on the day: the things we’ve done; the things we’ve enjoyed and of course the things that we are most concerned about. And if I’m honest I haven’t always given these moments the attention they deserve; “Talk to me about it in the morning”, which absolutely never happens, or “I don’t want to talk about that now, I won’t be able to sleep.” I became a parent over twenty five years ago now, and if I could give my younger self a single piece of parenting advice it would be, to never not have time for the conversations that your children want to have with you, before they go to sleep.

Mikey is no different, in the moments before he goes to sleep we’ll often talk about the day that we have had and any memorable events that had taken place. For example, if he’d been able to play a practical joke on somebody, like pushing them into the mud when they went for a walk, he will start the conversation with:

Mikey: “What happened to Laura (or Greg) (or Mummy) (or Dad)?”

Me: “What happened to Laura?”

Mikey: “She got stuck in the mud”

Me: “Oh dear, who did that was it Mikey”

Mikey:  Chuckles

Me: “Poor Laura – was that naughty?”

Mikey: “Not naughty just cheeky”

Sometimes the conversations will be about other things: like Mikey having helped me with a chore, or something that one of his grandparent’s might have done, or where he wants to go for his holiday. But in the weeks during which we knew Adam was dying the conversations went in another direction.

Me: Daddy had to go and see Adam in the hospital. He’s very poorly.

Mikey: Need to take Adam to the Church

Me: Why do we need to take Adam to the church?

Mikey: God can make him better

Me: That’s a good idea Mikey

In the weeks that followed as Adam’s heath fluctuated, with periods of improvement interspersed with sudden declines, taking Adam to the church so that God could make him better became the dominant theme of our conversations, until Adam passed away and I had to tell Mikey that he was dead. And I have to be honest, I really can’t remember how I told Mikey that, or even if it was me. But I remember that our conversations would include phrases like “Don’t like it dead” and “Don’t like it sad”. Then came the conversation about the funeral that was complicated by the fact that it meant a significant change in his routine:

Me: Daddy and Cathy and Greg and Laura and Summer baby are going to take Adam to the church so that he can live with God and God will make him happy;

Mikey: God will make it dead go away;

Me: Yes Mikey, God will make it dead go away and Adam will live with God and be happy

Mikey: OK

Me: Do you want to come to the Church with Daddy and Cathy and Greg and Laura and Summer Baby – or do you want to stay with Nanny and Grandad – and Daddy will come and get you at 5 o’clock?

Mikey: Stay with Nanny and Grandad…

I’m not sure where Mikey’s faith in the power of God has come from, it certainly wasn’t form us any of us, his immediate family. I suspect he will have pieced key ideas together from lessons he’ll have had at school and possibly a conversation we once had about church being where you go when you want to talk to God or people who are dead.

The conversations about Adam continue, although they are much less frequent now, and since the funeral and Mikey seems content that God, has indeed taken away being “dead”, and that Adam is now happy living with God. And if you’d asked me just a short while ago if Mikey had any grasp or understanding of some of the core concepts of Christian faith, I’d have probably laughed at you. Perhaps, there is something to be said about making decisions about people’s capacity at the time that they need to be made and for the conversations that we have at the end of the day.

An industry of fear and violence – when everything else is gone

One of the things I’ve learnt about being the father of disabled sons is that conversations with practitioners aren’t always exactly about what you think they are about. You might be talking about the details of a care plan or something that you’ve done; but certain things or actions on my part might trigger a micro-assessment in the mind of the practitioner I was talking to. Is what I was doing age appropriate? Was I being overly tactile with by deaf-blind step-son? Is something that my son said an indication of his idiosyncratic use of language, or does it indicate something more sinister.  Safeguarding the well-being of vulnerable people is a core part of all practitioner’s responsibilities not just social workers and it is their responsibility to put the interests of the people I love ahead of mine. So, I’ve always been happy to accept timely suggestions about how I might be able to do things a little differently. But that kind of informal preventative safeguarding requires time and trust and is becoming increasingly rare and now safeguarding is almost invariably about the responsibility that practitioners have to identify harm being done to vulnerable people after it has happened. But safeguarding isn’t just a responsibility, it is also a power and as with all powers its use is fraught with danger.

I was reminded of this when I read one of Mark Neary’s tweets recently:

“Whenever I mention our encounter with Community DoLS, I can guarantee that I’ll get at least 1 reply that feels I need reminding that disabled people need safeguarding from their families too”

It’s a tweet that is rich in meaning. There is resignation; an acknowledgement of the self-evident truth that sometimes disabled people need to be protected from their families; and there is the more sinister undertone that Mark with all of his experience of the system needs to be aware that what happened to him was done with the best of intentions, because after all “disabled people need safeguarding from their families too”. Unfortunately for Mark and for all of us the stats on the abuse of vulnerable people don’t do us any favours.

According to “Abuse of Vulnerable Adults in England – 2012-13, Final report, Experimental statistics” which amongst other things found:

Physical abuse and neglect were the most common types of abuse reported in referrals, accounting for 28 per cent and 27 per cent respectively of all allegations. Alleged abuse was more likely to occur in the vulnerable adults own home (39 per cent of all locations) or a care home (36 per cent).

The source of harm was most commonly reported as a social care worker (32 per cent of all perpetrators) or a family member (a combination of the Partner and Other Family Member categories, 23 per cent).

In these statistics, scepticism about and the judgement of families is legitimised, and with that legitimation comes the power to make families the problem and the threat. It means that As Rob Mitchell put it today in the same twitter thread:

The state creates an industry of fear & violence. It’s enshrined in legislation. It convinces people that financial scams, coercion, bullying, risk & abuse happens at every turn. It then sells people state intervention as insurance against the fear. 

But are we the problem and is increased surveillance and state intervention in our lives always the solution? Unfortunately, sometimes we might well be the problem, and at times intervention must happen, but think about it for a moment. Why are vulnerable people harmed, why do they need to be protected? Well there is always malice and the desire to do harm to other people. But not all abuse happens because of a desire to do harm, sometimes it happens out of ignorance or out of not knowing how to deal with certain kinds of situation.

There is a presumption in the data in the report I quoted, that the physical abuse carried out by a social care worker is the same as the physical abuse carried out by a family member. The report tells us that social care workers are responsible for more harm than any other group. Yet social care workers are trained, they receive supervision, are paid and can go home after their shift. From other sources and scandals we know that settings that are poorly run with untrained and unsupervised staff are more likely to have an abusive culture than organisations that are well supervised with well trained staff.

Whereas families get very little guidance, support,  or training, they don’t get paid and are often in it for the very long haul. But what might cause a family member to harm a relative? As with social care workers there is always malice. But what we do know is that families are unlikely to have had any training or support. So, a husband or daughter, caring for an elderly relative with dementia who keeps wanting to leave the house during the night, is unlikely to have been taught how to keep them safe without using inappropriate forms of restraint or confrontation. The consequence can be harm and bruising. This would not have been an act of malice and with effective support and guidance that abuse by the family member might have been prevented.

In my experience the harm that families do to their loved ones often arises out of not knowing how to deal with difficult situations, or because they simply do not understand a person’s rights as adults. So, for me the question that comes out of the data in the report, and the undertones of the safeguarding advocate commenting on Mark and Stephen’s story is how often might the harm caused by a family member be prevented if they were properly supported and given training in safer ways of managing difficult and distressing situations? Or to put it another way if there was more support for families and less surveillance.

Unfortunately the sad truth is that as local authorities budgets come under increasing pressure and their safeguarding functions become the thing that gets cut last; then the ability to put in the kind of support that can and would prevent some forms of abuse is either cut or was probably never put in place in the first place.  What is left as Rob Mitchell put it, is the state’s “industry of fear and violence” because everything else is gone.

 

If at first

I was gutted to hear that a young man we have been campaigning for as part of #7daysofaction has had to go back into the unit that he had spent so many years locked away in. And I have no doubt that the Director’s of the for profit private hospital that he has returned to will be as upset as I am that things didn’t work out the way that we hoped.  

It reminded me of when my step-son left the John Townsend Trust in Margate. He’d been subject to some appalling standards of care and we had decided to move him. And with the full support of the local authority and his CHC case manager we got him a new place. A transition process was set up and the new team spent weeks preparing for the move. This involved his new team spending a week at the John Townsend Trust getting to know my step-son and the way that he liked things to be done. I think it is fair to say that the reception they got was unhelpful to the point of being obstructive. Because all the team at the John Townsend Trust could see was the money they were losing. For them my step-son wasn’t a person with the right to a good life, he was a commodity, an income stream.

Now I don’t know how co-operative, the team at the hospital, to which he has returned, have been in all of this. They may have been brilliant, they may not have been. And none of us know if the new provider, was able to do the work they needed to do in order to make his return to the community the success that he and his family need it to be. We don’t really know why things went wrong and we don’t know what it will take for it to work next time.

What we do know is that if everybody gets it right it this can work, but that getting this right self-evidently isn’t easy. It will require the whole hearted commitment of everybody concerned. We might also want to be mindful of the fact that somebody somewhere has to be willing to try again. Maybe it would be the provider that tried and failed this time maybe not, few of us are in a position to make that judgement. But what this young man doesn’t need, is a situation where nobody is willing to risk being his provider, because of the criticism they would get for having tried and failed. What he needs is for everybody to dust themselves off and work out what has to be done, so that he and they can try again.

We need to talk about George …and Neil’s theory of change.

I was reading through some of the tweets on the #BawaGarba hashtag the other day and something occurred to me. George Julian was getting some pretty harsh treatment from a Doctor about her reasons for supporting the families of people with learning disabilities, commenting about a recent Churchill scholarship trip to Australia and some other stuff about how she was using us in her own interests. Now, I don’t agree with everything that George does or posts; we’ve disagreed with each other in the past and I have no doubt that we will do it again in the future.  As for her motivations, well why do any of us do what we do? For that matter why do doctors go into medicine? Is it because they are selfless or because they like the power they have over the people in their care? Ultimately it is nobody’s business but their own, what matters is what people do and the difference that it makes. And it was during George’s live tweeting of Richard Handley’s coroner’s inquest that I really understood the importance of what George does for all of us. She bears witness.

She bears witness to a struggle that she does not need to be a part of and whilst there are a great many others who support what we do, if we are honest about it, there are few who do it at such a cost to themselves. Think about it: there is the emotional cost of having to listen to what she listens to in forensic detail without supervision or emotional support; and there is the fact that George is a self-employed consultant and her biggest potential clients are likely to be in the public sector, in particular in local authorities and in health. Every time George posts something in support of families she probably loses a potential client.  

Anyway, the thing that occurred to me related to something that Neil Crowther had tweeted about how we need a theory of how we are going to change the system, if we are ever going to change it.  And he’s probably right, we probably do. Because the system that we are trying to change is passively or actively supported by everything that is powerful in health and social care; by institutions, by huge businesses, by the political ideologies of all the major parties and by the power of most of the medical professions. In that twitter discussion George Julian (and Sara, John Lish and Mark Neary) weren’t just arguing with individual anonymous doctors; they were arguing with all of the doctors who weren’t saying what they really thought; they were arguing with a profession that is yet to find the right balance between accountability and the right to make mistakes; they were also arguing with a profession that is itself under siege from a government and an electorate that believes the myth that you can have a first rate health and social care system, without being taxed for it.   

But our ability to change things for and with people with learning disabilities needs both a theory of how we are going to make that change and the resources to deliver it. At the moment, the only funding that is available either comes from the institutions we want to change or from businesses and organisations that have their own agendas.  None of which are likely to fund work that will transform the system that sustains them. So, it is almost inevitable that organisations that start off being radical and innovative, become cautious and conservative as they become dependent upon funding from within the system.

The only people who will fund the change that is needed is us; all the people who really want things to be different. Because the theory and the actions that will lead to change, will come from the stories that people tell and the solutions that arise out of them. Whether it is something that George has live tweeted, or a conversation that Jayne Knight has had with somebody in an inpatient hospital; or the stories of people who are struggling to live in their communities; or an event organised by Bringing us Together; or Mark Neary presenting to a parliamentary committee; or Julie Newcombe supporting a family; or Sara doing what only Sara can do. In the end, all the work that needs to be done to change the narrative and the system will fade away if we don’t come together and fund it.

Perhaps that would be a legacy to those we have lost.    

Justice for Connor Sparrowhawk and the “difficult” field of learning disability.

I’ve not blogged about Connor Sparrowhawk for a good while now; not because I haven’t wanted to, but simply because Sara has enough on her plate without having to put up with my occasionally left field take on the world. But the judgement in the case against Dr Valerie Murphy was profoundly important not just for Connor’s family, but for all people with learning disabilities, and everybody who has anything to do with their lives. It reflects much of what is wrong with the care that people currently receive, and it is likely to reinforce many of the prejudices that shape the kind of medical care and support that our loved ones receive.

It is often said that the way in which we talk about something defines it; but sometimes it’s also about what that language gives us permission to be able to do or not do, and for me one of the most disturbing aspects of this judgement lies in use of the phrase “the difficult field of learning disability”, which was used to justify passing what most people seem to think is a lenient sanction. It’s fair to say that the social media response to the use of the phrase has been one of outrage. People have pointed out that it can be used to undermine the right of people with learning disabilities to good quality healthcare, and they are right, it can be and undoubtedly is. But the problem is that whilst people are right to argue that the use of the phrase undermines the rights of people with learning disability, whether we like it or not the world of learning disability can be difficult. The issue is how we respond to that difficulty.

I knew a young man who was nonverbal; who would sometimes express anger and distress by punching himself in the side of the head. It always had a cause, and was never done without reason, and the reasons were varied. He did it when he had a tooth ache, he would do it if he had indigestion or some other kind of tummy problem. He might sometimes do it if you changed his routine or if you tried to get him to do something that he didn’t want to do. He also did it if somebody he was close to didn’t turn up when he expected them to. Or if somebody he loved was no longer a part of his life. The challenge in trying to get him to stop, was working out what it was that was annoying or upsetting him. Had somebody made him wear a top he didn’t want to wear. Had they made him get out of the bath before he was ready to get out? Had he eaten too much cheese? Was he constipated? Had he fallen in love with somebody who worked with him. Was it pain or some other underlying medical issue.

Sometimes learning disability can be a difficult field and whether or not a person is able to speak for themselves makes little difference. The thing that separates the good practitioner from the poor is how they respond to that complexity. In order to understand a person and make a judgement about their care and support, they need to know them and if they do not have the time to get to know them, they have to draw on the knowledge and expertise of the people who know them best, which will most often be their family. I have seen it done incredibly well by practitioners with very little time and incredibly badly by those with no excuse.

In most forms of residential or hospital setting, practitioners do have the time to get to know people. They have the opportunity to work with families and to develop an insight into an individual’s life and stories. They have the time to work out what the key questions are – and sometimes those questions really aren’t that difficult – had he eaten too much cheese? Is he in love? The challenge is in knowing which questions to ask and if you don’t take the time to get to know the person in your care and if you don’t fully involve the people who know a person best in their care and support, then you are never going to know what those questions are. So maybe the mitigating phrase should have been – learning disability is a difficult field if you don’t get the fundamentals right – but I guess that wouldn’t have been quite as helpful in mitigating Dr Murphy’s sanction.

So, is the sanction lenient?

I suspect it is. Valerie Murphy didn’t get the fundamentals right. She spent little time with Connor, she didn’t respond appropriately to key incidents and self-evidently failed to draw on Sara’s knowledge and understanding of her son. The quality of her practice didn’t make learning disability a difficult field, it made it almost impossible for her to do her job with any hope of a positive outcome for Connor. These factors alone probably should have led to a significantly greater sanction.

But I suspect even that would fail to be any kind of justice for Connor. For any kind of suspension to be appropriate then all of the failings and shortcomings would need to have been born out of medical error. Genuine mistakes on the part of a well-meaning but (like the rest of us) ultimately flawed human being. But anybody who has followed George Julian’s live tweeting will know that much of the defence was too often about what Connor’s mum may or may not have done or said or blogged. As if, in Dr Murphy’s mind, Sara was somehow responsible for all the flaws and all the shortcomings of Connor’s care. And it is therefore difficult not to have the impression that Sara’s knowledge, experience and insight was deliberately cast aside as an act of petty vengeance on the part of a clinician with too much power and too little professionalism. And if this was the case then no kind of suspension or removal from medical register will give Connor the justice that he deserves.

We will probably never know if Valerie Murphy’s practice was as flawed as I suspect it might have been, only she can answer that question of herself.