Waiting for the bus and the spectrums of ish

We walked to the supermarket the other day, and Mikey had misunderstood something I’d said and was agitated. So it was one of those shopping trips where we attracted a lot of attention. He was loud and bouncy and on edge and keen to get it over and done with. The obviousness of our difference plain to see. My attention was on him, but on the periphery of my gaze I caught glimpses of people stopping and heads turning.

After we’d paid for the shopping, we walked out into the spring sunshine and crossed the road to the bus stop where we waited, sitting on a wall. I’d worked out what it was that was bugging him and he‘d calmed down by then, and he hummed away to himself, occasionally commenting about one thing or another. And I daydreamed about people and difference and the spectrums of ish.

I’d read Steve Silberman’s book Neurotribes a while ago and liked it; well I’d liked most of it. It’s insightful compassionate and it has achieved what it set out to do and popularised the transformation of the way in which we think about people who think differently. It got me thinking about the idea of neurodiversity and the lines that divide being neurologically typical or divergent.

The term neurodiversity was originally used by Judy Singer in her thesis in 1998 and apparently Harvey Blume used the idea in an article in the New York Times. I haven’t read that but Judy used it to describe the emerging idea that disabled people with autism, ADHD or some other diagnosis or condition are not “broken” they are simply neurologically different. Since then the term has been used by high functioning people with autism and Asperger’s to build a social movement; a campaign for the rights of people who are neurologically diverse and in my opinion that’s a good thing.

But the use of the term and the growth of the neurodiversity movement has also gone hand in hand with the popularisation of the terms neuro-typical and neuro-tribe, and in doing so it has led to the emergence of oppositional tribe like identities. These I am less comfortable with. People are either neurodiverse or neuro-typical and whilst that binary makes it easier to establish a movement and resistance to the discrimination that autistic people face, for me like all tribal identities it oversimplifies the complexity of all people and exaggerates the importance of difference. Steve’s book asks us to be smarter about people who think differently but doesn’t everybody think differently?

Anyway after a fairly long wait the bus had arrived and whilst most bus drivers around here are pretty friendly, this particular driver wasn’t. But, Mikey didn’t notice and he likes buses, and he did his usual thing; so every time that somebody pressed the stop button he called out “stopping”, in a voice loud enough to be heard the length of the bus and he interspersed these with comment’s about how dirty my ears are. Which they are not but he knows it embarrasses me so he does it to amuse himself.

The responses to Mikey’s commentary are varied. Some turn around to look briefly; others look and smile sharing the humour of the moment. Some will laugh at him. Often people who are sitting close by will stare straight ahead or immerse themselves even deeper into whatever virtual reality they are engaged in on their phones.

I sometimes wonder what it is that they fear, what is it that they imagine that he will do. I wonder how many see in him the qualities he may share with them: humour, love, understanding, courage, skills, strengths and failings. Or do they simply see the divergence and the difference, a member of another tribe – his otherness juxtaposed with their sense of their own normal and typical. And I guess that’s why I have a problem with the whole concept of neuro-tribes, it delineates arbitrary categories of difference. It draws hard lines where there should be shades of neurological variety and richness. It encourages people to retreat into those tribal identities rather than embrace the diversity of what we all are.

As the father of two young men on a particular spectrum and the uncle of another. I understand too well the impact of hard lines and the tendency of those who aspire to belong to one tribe or another, to use language and difference as a weapon or way of dealing with uncertainty. I’ve lost count of the number of people who have felt the need to diagnose or who have dealt with a challenge to their sense of normal by staring straight ahead and hoping the challenge and difference will go away. The psychological equivalent of staring at their phone as they struggle to stay within the security of their imagined tribe.

But are there really neurological tribes or are there simply spectrums of difference? Rainbows of neurological colour and diversity, where neuro-type is not a tribe or identity but simply our own particular place on the spectrums of ish.

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Dusting Ourselves Off

After posting the blog on My Own Front Door we had a huge response, some of it very positive and some less so, in fact to be blunt it got pretty heated at times. So after careful consideration, we think that it’s best not to proceed with My Own Front Door as a 7daysofaction project. It’s still a good idea and a number of people and organisations are thinking of taking it forward as a new initiative and I’ll be supporting them in that just as I’ll be supporting the families at 7daysofaction.

So where do we go now with 7daysofaction?

Well as recent events and posts on the have shown, despite the rhetoric about improving the system, too much is as bad as it was, and as always it’s people with learning disabilities and their families who are living with the consequences. There are plenty of people who want 7days to fail but the need for 7daysofaction is as great as ever so we need to start working on our next campaign. Well – I’ll let you into a secret, we’ve actually been working on it for quite a while now.

As I said in my last blog, last Summer we put in a freedom of information request to NHS England to get the financial information from the Transforming Care Partnerships and with a lot of help from Elaine James and Chris Hatton we’ve been analysing it. We’ve already sent off an academic paper (well, Elaine did) but we are now approaching the point where we need to start using some of the information we have produced for our next 7daysofaction campaign.

But rather than just writing a series of blogs on the finances of the system, which would be pretty dull. What we want to do is to share families’ experiences around a number of themes and use that to illustrate the impact that money and economics is having on people’s lives and the struggle to get people home, or keep them at home. We want to weave the two together and bring the data to life with your stories. We want to remind people that every argument they have about who should be paying for something has very human consequences.

There are three themes that we want to be part of the next campaign:

  • The impact of distance on family life
  • Fighting about money and the struggle to get home
  • Local provision and support

So we want you to tell us about your experiences on any or all of these themes. Unlike previous campaigns, all of the experiences that we share will be done anonymously so you don’t have to worry about people using the information you share with us against you.

We’ve created a web-page on our site where you can tell us about your experience so that we can build it into our next campaign.

Click here to tell us about your experiences


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7daysofaction – Our Plan

For a while now we’ve been working on a plan on how best to take things forward with 7daysofaction. For those of you who don’t know, 7daysofaction is a family and supporter led campaign that is fighting to get people home from inpatient hospital provision. Many of the people being held in these hospitals are being detained against their will under the Mental Health Act 1983 and many are simply there because there is insufficient support in their home communities. The campaign is fighting to get people released, it’s fighting to keep them out and it’s fighting to stop people from going into these places in the first place.

So far our campaigns have mainly consisted of highlighting the stories of individual families and the challenges that they face in their struggle with the system, but for a while now we have been looking at ways of adapting and broadening our campaign and making it more solution focused.  We successfully put in a Freedom of Information request to get financial information how Transforming Care Partnerships were spending money. We have developed a website that allows us to share people’s stories and to keep track of what is going on in their area. We and our partners are working with individual families to help to get them home. But the struggle to get people home has to be stepped up, because in too many places people are still being drugged when they do not need to be, restrained when they do not need to be and subject to assault and excessively long detention.

In order to do this, we recognise that we will need to work collaboratively with practitioners, commissioners and providers to ensure that everything possible is being done to reduce and minimise the use of inpatient hospital provision for people with learning disabilities and/or ASD. And therein lies the problem that we have in developing our plan for the way ahead. How do you tell the parent of somebody who has had their arm broken by a support worker, that working in partnership with the organisation that employed them and then covered it up, is the way to go? How do you tell the mother of somebody who died in an organisation’s care that the best way to stop it from happening again is to work with the organisation? The simple answer is you can’t and you shouldn’t.

Nevertheless, the dilemma remains and it’s a dilemma that is common to many campaigns working across health and care, and for a while now the steering group at 7daysofaction has struggled with how best to reconcile it within the work that we do. We have been a space for people to share their hurt but at the same time we have striven to find solutions. I’ve advocated that we become less reactive and more strategic in the way that we operate, whereas Mark Neary has done what he always does; he simply reaches into the humanity of a moment and nails it for what it is. My argument is that angry people are easy to dismiss; and his and I suspect many others would be, that if you don’t get angry in the face of these things you are missing the point?  He’s right of course, but that doesn’t change the reality of how easily families can be marginalised.

So where does this leave us, how do we reconcile the pain that families have had to endure and their right and need to express that pain; with the need to work in partnership with a system that is too often the cause of that pain? You probably can’t but this is what we are proposing to do.

Our Plan

Going forward we propose that our campaign has two focuses

  1. 7daysofaction
  2. My Own Front Door


7daysofaction will continue to focus on the experiences of people and their families and their struggle with the system. It will shine a light on what it is actually happening to people in inpatient provision; and as it has always done, it will do this by telling the stories of families, gathering information and challenging the myths pedalled by vested interests.  We will continue to provide families with a space to share their experiences by:

  • Maintaining the website – sevendaysofaction.net
  • Maintaining two Facebook Groups
    • 7 Days of Action Campaign https://www.facebook.com/groups/7daysofaction/ This is the main Facebook Campaign Group which currently has almost 1700 members.
    • 7 Days of Action Support Group – This group was recently hacked or infiltrated by a major independent provider and the information was used in an attempt to undermine one of our members. So we will be creating a secret and more secure group and admission process for families.


My Own Front Door (MOFD)

My Own Front Door will be a platform for collaboration that will allow people and organisations to work together in support of the interests of people with learning disabilities and/or ASD and their place in our community.


We have defined it as – A collaborative project – People, families, practitioners and academics sharing experiences and perspectives on the rights of people with learning disabilities and or ASD to live in their communities in a place they call home.


It will have a news section.


And a section called My Own Front Door which acts as a doorway to different areas of interest. Our intention is that each area of interest will have its own sub-domain and that stakeholders who are involved in that area will all contribute content and co-edit their part of the site.

So far Bringing Us Together, Respond, You Know and of course 7daysofaction have expressed an interest in becoming a part of this collaborative project. Over the coming months we want other organisations and individuals to join us and work with us in developing this solution focused resource.  We want it to become the place to go for examples of what works, with a culture that recognises and respects differences of perspective, whilst at the same time being rigorous and challenging. It will have a governance framework that recognises the right to challenge but requires mutual respect.


It will continue to work to get people out of inpatient provision but the project’s focus will be broader than that of 7daysofaction itself. The emphasis will be on the place of people with learning disabilities in our community and the importance of having somewhere that you can call home.

We envisage that it will cover a broad range of interest areas from, Transforming Care, the Transition from Children’s to Adult’s services, to Patient Safety and reasonable adjustments. As families we know that policy initiatives come and go, so overtime these interest areas will evolve and so we hope, will the organisations and individuals who come to play a part in this venture.

The Next Steps

We believe that this approach can help us to find a way ahead for 7daysofaction that recognises the hurt and pain of so many families, whilst at the same time creating a platform for the collaborative working that is central to a better future for our loved ones.

We want you to tell us what you think.


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Charging at the Romans

Its AD 61 and you are standing in a field somewhere in the Midlands and you are angry, raging at the injustice of it. Your world has been conquered, Boudicca’s daughters have been raped and along with well over a 100,000 of your fellow Britons you are hell bent on having your revenge and on punishing the Romans for what they have done. Driven by your indignation and convinced that you have right and numbers on your side, you and your fellow tribe members charge at the Romans – a seething mass of rage surging across a field. Unfortunately, it was a field of the Romans choosing. It was open, yet narrow and despite being massively outnumbered, their organisation and superior tactics meant that they were able to slaughter tens of thousands of Britons for the loss of only a few hundred Romans.

There is something about this scenario that reminds me of us. I’ve lost count of the number of times I’ve heard the parents of disabled children and adults described as warriors and we are that. And time and again you see a new generation of fresh faced families drawn into the choice between collaboration and conflict. Should we work together with the system to improve services for our children and then adults? Or should we arm ourselves with a Code of Practice and a phone call to IPSEA and embark on a lifetime of struggle?

It’s a Hobson’ choice. On the one hand working together with practitioners is essential if we are to get the best outcomes for our daughters and sons, and on the other hand if you don’t struggle, if you don’t fight for what is right the system will ignore you until you become a crisis.  When that happens we all Charge at the Romans only to be mown down by their might and intransigence.

On Wednesday night Dispatches showed a documentary into some of the care that was being provided by St Andrews Healthcare in Northampton – it was harrowing and disturbing viewing and the families that took part in it displayed enormous dignity and courage. The programme rightly sparked a wave of outrage across social media of which I was a part.

The next day St Andrews responded with a statement stating that the programme was biased and that the film-makers had not given them a fair right of reply. True or not, there were a number of other things that hadn’t been done. As somebody who has spent a lot of time researching how Transforming Care is being implemented, I knew how cursory and poor the coverage of that had been. I knew that the programme researchers didn’t know how poor St Andrews implementation of the New Code of Practice is, and why that is so important, and that this failing is spread across the whole sector. I also knew that the large providers like St Andrews hold commissioners desperate to find a bed for somebody in crisis, to ransom. In short the programme makers had been over-reliant on the stories of the families and had failed to support their courage with the research and rigour that the subject deserved.

It was probable that this lack of rigour was one of the reason’s that the story didn’t get that much additional coverage in other media outlets and it was probably for this reason that people on social media were popping up to defend St Andrews. One of the people who popped up to defend it was a film-maker who apparently argued that a film he had been involved in making showed that there was another perspective. His film called “In Our Own Words” (which had undoubtedly been commissioned by St Andrews for marketing purposes) was presented as the voices of some of the people who had been at St Andrews and late yesterday it was put on the 7daysofaction public campaign page. Where it was greeted with the comment “Fuck the fuck off & then fuck off some more” and 14 likes. The charge across the field was in full flow. There was no thought that these were the voices of young people and how this might look, there was just rage and indignance.

However, justifiable anger might be. It is in moment’s like this that the voices of families and their supporters become instantly dismissable. Whilst it is perfectly reasonable to challenge the independence and balance of a video, mindlessly attacking a representation of the experiences and voices of young people makes the marginalisation of families so much easier to achieve – rather than being experts in the culture of our sons and daughters – we become an unreasoned mob.

St Andrews is a part of a huge industry that has grown up around the care of people who are in crisis. It is an industry that has its own interests and its own agenda. It has evolved out of an era when people with learning disabilities were often seen as less than human and where the voice of the clinician is seen as un-challengeable (not much change there). Some of the people who work in it are good people trying to make a difference, some are not. It is a part of the healthcare system that operates differently to other parts and it is far more affected by the decisions of healthcare entrepreneurs than much of the rest of the NHS. It is an industry that is expert in how it presents itself and is more than capable of hiding itself behind the voices of young people.

That is what we are fighting. If we charge at it without thought, we will get slaughtered, at least in public relations terms.  But it is vulnerable. It is vulnerable to the rights of the people who go there, to the concerns of their families, their practitioners, their regulators and their commissioners. All of the people with a responsibility for a person’s well-being and best interests.

Norman Lamb was the Minister that began the attempt to Transform the Care of in-patient provision following Winterbourne View. Yet, despite his best efforts as a Minister and since, and the efforts of a great many people, not enough has changed. But it still can and I genuinely believe that if we all work together we can change an industry that has brutally resisted transformation. But if we as families want that to happen and it won’t happen without us – the whole “Charging at the Romans” thing – it’s really got to stop.

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When time reaches;
for the warmth in your heart
and the love in your soul,
and all is hurting and aching,
from words you wish said
and deeds you wish done,
and you need to say
I love you
with all of your heart
and all of your soul;
then do so,
just gently,
just softly
and let her gift to your past
be yours to the morning.

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Unreasonable Adjustments

Chris Hatton wrote a blog last week in which he argues that disabled people are subject to systemic institutional disablism in health services.  Using data on the deaths of people with learning disabilities from an Australian study carried out by Julian Trollor, Preeyaporn Srasuebkul, Han Xu and Sophie Howlet  and comparing it to findings on the reported age of deaths in other countries including England, the USA, Canada, Ireland and Germany, Chris argued  that the gaps in death rates between people with learning disabilities and the repeated failure to learn from these differences in death rates, is indicative of systemic institutional disablism. And that whilst some awareness raising had come about as a result of campaigns such as the #JusticeforLB Campaign, little genuine progress had been made in tackling this issue. It’s a convincing and well-argued case.


But it almost inevitably leads to the next set of questions – the why and the how – and in trying to find any kind of answers to those, I think we have to look beyond the boundaries of the institutions themselves into the culture and society in which they are located and in which they operate.

One of the key mechanisms for improving the care provided to people is  the idea that institutions should make reasonable adjustments in-order to make them more inclusive of disabled people. It is an idea that has been broadly accepted and it was incorporated into the Equality Act 2010. Specifically it places the following duty on people and organisations:

(2) The duty comprises the following three requirements.

(3) The first requirement is a requirement, where a provision, criterion or practice of A’s puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.

(4) The second requirement is a requirement, where a physical feature puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.

(5) The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid.

Equality Act 2010

In theory this should make a difference, the language sounds hopeful and in practice has involved organisations developing policies, recruiting learning disability nurses, delivering annual health checks and a range of other ideas many of which are listed on the Public Health England Database.

If we take the database as representative of the work of those organsations that have been pro-active in trying meet their responsibilities under the duty. Then what is interesting about the adjustments, is that most are adjustments to the way in which the organisation provides information. There are relatively few examples of how organisations should change their systems in order to make them more inclusive and effective for people with learning disabilities. Although there are some exceptions to this – for example the work done by The Royal Berkshire NHS Foundation Trust shortly after the Equality Act 2010 became law.

It’s probably worth more detailed analysis, but the examples illustrated in the database, indicate that most core care pathways, most policies and most internal hospital processes remain relatively untouched by the need to make reasonable adjustments to their “provision, criterion or practice”. This not only seems to vindicate Chris’ point about systemic institutional discrimination it also allows us to conceptualise what a “reasonable adjustment” actually means in practice.

So on the basis of what organisations have actually been doing, then seven years on from the passing of the Act, it would seem that we have come to define a reasonable adjustment as a minimal change to the way in which our health services operate, a change that doesn’t affect the way in which core services are delivered or monitored. This is despite the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (2013) , a commitment in the NHS England Mandates for 2014-15 and 2016-17 to reduce health inequalities for people with learning disabilities, The Mazars Repot, the ongoing Learning Disability Mortality Review and Transforming Care – Building the Right Support.

We could put it another way. We could argue that our society’s actions define significant and meaningful changes to the way in which health services are provided to people with learning disabilities (the kind of adjustments needed to keep people alive) as “unreasonable adjustments”. In the minds of most, expecting a doctor to change the way he or she engages with people is unreasonable. Allowing more time to consult with a patient with a learning disability is unreasonable.  Expecting people to pay more tax to pay for that time is unreasonable, because services are only funded to be delivered to most people, not all people.

Chris is right, there is systemic institutional disablism but I think it goes beyond that. We live in a society that views the life of a person with a learning disability as less valuable than that of the average voter and tax payer. And that reality, shapes access to services and the measures that are deemed reasonable to improve that access. And whilst our society has moved on from mercy killings and deliberate starvation; wherever we live around the world, the difference in life expectancy between the wider population and a person with a learning disability, is at least a measure of our ability to look the other way while other people die and at worst an expression of our violence.

Today I heard of the death of another person with a learning disability who didn’t need to die.

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7daysofaction – The ATU Empire Strikes Back


There’s a clip toward the end of the second Star Wars film where Luke Skywalker (the goodie) discovers that his father is Darth Vader (the baddie). Darth then goes on to prove how evil he is by chopping off his son’s hand and having his revenge on the Rebel Insurgency for blowing up the Death Star.

I don’t think it’s pushing the comparison too far to say that many of the families campaigning to get their sons and daughters out of in-patient provision, see themselves as a bit of a Rebel Insurgency. For them the power of the institution, the Registered Manager and the Responsible Clinician is dark, unresponsive and omnipresent. It is a power that is sustained by legislation that was drafted over thirty years ago, when the word of a clinician was something akin to truth. When their opinions and status were absolute and unchallengeable.

Today the world knows differently. We know that the word of a Responsible Clinician is simply an opinion. It may be educated and informed; it may be based upon experience and it may be based upon the best of intentions, but ultimately it is one person’s judgement.  But it is a judgement that can dictate the course of a person’s life and liberty and it’s not surprising that so many of the families that we talk to live in genuine fear of them and the institutions that they work for.

They are scared and yesterday we were reminded why.

One of the parents’ who has shared their story with us, found out that their son had been involved in some sort of incident at the unit; he had been injured and had then been taken to A&E. However, the parent, who by the way is the young man’s nearest relative, wasn’t informed for another 10 days and as far as I am aware there was no involvement of an Independent Mental Health Advocate either. The unit would appear to have taken the decision that they were justified in withholding the details of this incident from the parent because the parent had publicly campaigned for their son’s release and had publicly challenged the way in which things are progressing.

In justifying their decision, they will probably have argued that they have a responsibility to protect the young man’s privacy and they will have wrapped that justification in the language of the Data Protection and Mental Capacity Acts. It will not matter to them that inappropriate use of that legislation can create situations that leave our people isolated and vulnerable to “risk of harm and abuse”.

The decisions to publish the stories that we do are not done lightly. We try and balance the right to liberty with the right to privacy. We acknowledge that for some of our people the journey back to their community is a challenging one and that ultimately it is a journey that families and practitioner’s must work together to facilitate. Despite the age of the legislation and its inherent flaws – we believe that if practitioners work in the spirit of the overarching principles of the MHA, as outlined in the Code of Practice 2015, then families wouldn’t need to campaign as they do and they wouldn’t need to live in fear of the seemingly arbitrary power of Responsible Clinicians and Registered Managers. For those of you who don’t know. Practitioners providing services under the Act are expected to adopt the least restrictive option and maximise independence; they are expected to empower and involve patients and their families; treat them with respect and dignity; and they are expected to have a purpose, be effective and work efficiently with others to support a “timely, safe and efficient discharge from detention”. Nowhere does it state that these principles are suspended if we challenge your practice.

There are undoubtedly some practitioners who see 7daysofaction as a threat to the current order and the way that they believe that things should be done. And as the powerful do they will be inclined to misuse their power to protect their primacy and status, and on occasions, such as these, they will use it against us. But they might want to reflect upon a simple fact –  in a way they are our father and we are the child of their poor practice without which we wouldn’t exist.


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