The ATU as Failure

Black box thinking and the role of assessment and treatment units in the lives of people learning disabilities and challenging behaviour.

I’ve been reading Matthew Syed’s book “Black Box Thinking”. As a matter of principle I don’t normally read pop science, but Matthew had got a very complimentary mention in a parliamentary working group’s report on patient safety so I thought I’d give it a go. Anyway the book is about safety, risk and achieving high performance, and it was quite a relief for me to read that apparently failure is often a pre-requisite to success. It is a very good book and if you have ever failed or succeeded at anything it’s definitely worth a read and like most good books the important thing about it wasn’t just what I read, it was what it made me think once I started reading it.

At the moment apart from caring and developing a resource to support an organisation in its implementation of a new set of government standards , I am working on a website to support families who are trying to get their sons and daughters out of Assessment and Treatment Units. For those of you who don’t know, an Assessment and Treatment Unit is the name given to what is effectively a secure unit for people with learning disabilities, who also have behaviour that is usually described as challenging, but which might more accurately be described as behaviour that puts themselves or others at risk. But for the rest of the article I’ll stick with the term challenging although I will come back to the issue in another blog.

Anyway the idea behind ATUs is that people go into them for short periods of time so that packages of treatment and support can be put into place that will then allow them to return to their communities. The reality is somewhat less rosy. The average length of time that a person stays in such a unit is over 5 years, there is widespread use of drugs and physical restraint to manage behaviour and significant numbers of residents or detainees are considered to be impossible to place anywhere else.

Now you might say that this is unfortunate, you might view the existence of ATUs as a necessary component of provision for people with learning disabilities and challenging behaviour. Alternatively you might want to view the placement of a person with learning disabilities in an ATU as something else. You might see it as a denial of human rights. You might see it as an indicator of a failure of support; both the failure to support an individual and the failure to support a family and you might even see it as institutionalised abuse and on occasion assault.

The idea of the Assessment and Treatment Unit as part of a spectrum of provision is pretty much the status quo. The argument is that some people have needs that are so “complex” (click on the link to read an excellent blog by Chris Hatton on what is meant by the word complex) that they cannot be met within their communities, regardless of whether their normal “home”, is a home with their family, is one of their own, or is a group home with a number of their peers. In this world view the Assessment and Treatment Process is separate from everyday life and is usually a great distance from the communities in which people have lived. It is intrinsically medical and dependent upon medication and intensively behaviourist interventions to manage behaviour. The justification for it is the assessed threat that these individuals pose to themselves and the people around them.

But what if we view a person’s placement within an ATU as an injustice and a failure. What if we treated the placement of an individual in an Assessment and Treatment Unit as a kind of personal black box incident? A failure that requires thorough investigation and the best efforts of all concerned understand, to learn from and to remedy.  This is the approach that the government adopts towards patient safety so lets take the same approach and use it on the quality of the services that they provide. If we do that then the drive and impetus to get people out of Assessment and Treatment Units will be all the greater and will make it more likely that we will be able to overcome the current inertia that seems to be hampering current initiatives to get people back into their communities. But if we accept that the placement of an individual in an ATU is a failure how do we go about assessing and measuring that failure and through that assessment identify how such failures might be avoided in the future.

Assessing Failure

Fortunately many of the indicators required for assessing failure have already been identified.  They exist in the form of the “The New Service Model” from the government’s policy “Building the Right Support” which is part of its Transforming Care Programme.  The New Service Model comprises of a set of nine principles – well actually they are sets of principles and they actually add up to over 34  – but I guess nine sounds much easier for people in Trusts and Local Authorities to implement. Either way they provide us with a perfect starting point in developing a framework with which to assess “the placement of an individual in an ATU as failure “. It’s important to note that most of the principles outlined in Building the Right Support should already be in place from previous initiatives.

Building the Right Support’s – Nine Principles – the building blocks of success or indicators of failure

Using the Nine principles as the basis of good practice it is reasonable to identify their absence as indicators of failure.

So where Principle One of Building the Right Support identifies:

1. A Right to a Good and Meaningful life based on:

• Inclusion in activities and services
• Education, Training and Employment
• Relationships with people
• Support to do things

The failure to provide these things would be expected to be indicators of failure – the same would apply to the other eight principles.

2. A Person-centred care and support plan based on early and pro-active intervention that is key-worked to ensure effective co-ordination.
3. People should have choice and control over how their support needs are met with information provided in a range of formats, with personal budgets and access to independent advocacy
4. Support to my family and paid staff including:
   1. Support and training for families and carers
   2. Short break/respite
   3. Alternative short-term accommodation
   4. Trained support and care staff
5. Where I live and who I live with
   1. Choice of housing and who I live with
   2. Security of tenure
   3. Strategic housing planning 

6. Mainstream health services
   1. Annual health checks
   2. Health Action Plans & Hospital Passports
   3. Liaison workers
   4. Quality Checkers
   5. Reasonable Adjustments
7. & 8 –  Specialist Multi-disciplinary health and social care support in the community
   1. Specialist health and social care support for people
   2. Intensive 24/7 function
   3. Specialist forensic support
   4. Inter-agency collaborative working including with mainstream services
   5. Liaison and diversion
8. Hospital
   1. Integrated with Community Services
   2. Admissions based on a clear rationale
   3. Discharge planning
   4. Reviews of Care and Treatment (CTRs)

Building the Right Support p.26

So when we start building the website for families one of the things that I think that we should do is build a quality checklist, based on the indicators of the New Service Model and others. We would use it to evaluate the extent to which individuals and families were, and are being provided with the kind of support that the government itself believes is required to support people with learning disabilities and challenging behaviour within their communities. We will also base it on existing legislation and legal responsibilities. So that families will have a clearer picture of their legal position set within the context of a local authorities wider performance.

If we do this we will be able to develop a detailed picture of the reasons why an individual has had to go into an ATU and also challenge trusts and authorities that are failing to put sufficient support in place to get people out. We will be creating our own “black box” with which to challenge individual and systemic failure.

Building the Right Support promises to make things different and that is a bold promise – well if it doesn’t we’ll be the first to let them know.

 

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Confidentiality and the Campaign

Almost two weeks ago I published my proposal for an idea that I provisionally called a Ninja Project, and I thought it might be a good idea to give everybody some feedback on things that have been said about the idea.

The first thing to say is that the original proposal was very well received. People felt that it would be a great way of continuing the campaign for people with learning disabilities trapped in ATUs and the work that had been started by 7daysofaction. In addition there where a number of specific suggestions and questions about some practicalities and the form that it could take.

Four people have volunteered to help make it happen – yay!!

We have to own it

Based on real life experiences, grass root principles and just blooming well getting on with it

We have to draw on what has been achieved by #justiceforlb

Commissioners must be accountable to families

How can care providers fit into this?

How do we stimulate, encourage and resource inclusive communities?

Crowd funding

This was a great start and then a couple of days ago, the blog got a comment from a practitioner that raised the question of confidentiality. Asking specifically does confidentiality matter? Acknowledging the importance of this issue I wrote what I felt was a measured response that might best be described as reasonable. This was quickly followed on Facebook by a response from Becca Lamont Jiggens:

 I’m autistic and something we see a lot of is parents sharing details about their child’s struggles, reframed as ‘look at what I have to put up with’. That is undoubtedly wrong.

Here the campaign is to free adults wrongly incarcerated against their will; adults who are able to consent to their family sharing the details of their wrongful incarceration.

I was really surprised that the commenter instead brushed over the fact that the subjects of this campaign are human beings, and instead focussed on the risk that incompetent professionals / inadequate professional systems might be identified.

This commenter implies that the risk that a professional who contributed to the wrongful incarceration of a person might be ‘named and shamed’ is more important than the wrongful incarceration of another person – a vulnerable person at that, who these professionals are supposed to be supporting!

That there is the heart of the problem. When it’s OK to give a damn about the professional’s reputation and completely ignore the thousands of people locked up against their will and best interest.

How much more of a fucked up response can you get? Way to miss the whole point of the campaign.

The fundamental point that Becca makes and the point I’d failed to make is that the objective of the “campaign is to free adults wrongly incarcerated against their will”, it’s a human rights issue far more fundamental than the right to confidentiality. It is in this light that the decision to disclose confidential information is made and as Eve Smith stated

“it is out of sheer desperation that we act as we do for our sons..”

At around about the same time Mark Neary commented on his decision to speak publicly about Stephen in what he felt was a best interest’s decision and why he thinks it is important that people aren’t represented as statistics or initials

Finally, I also agree with the view often expressed by Dr Sara Ryan that the learning disabled are often seen as “not quite human”. To not tell the stories, to just use statistics or initials perpetuates that framing, in my view. If any change is to happen, the wider public need to engage with the human being in the story – People can engage with a Steven; they can’t engage with an SN.

John Lish was more cautious about the idea arguing that the telling of stories is ineffective and that:

What is needed is a systemic rigorous methodological framework that everyone buys into (the individual, the family, the local authority, the NHS, the Judicial System, central government) in order to keep people in the community whilst allowing intervention and treatment where necessary to ensure safety. The aspiration for that exists, law exists, guidance exists, financial pressures exists, the good will exists, the words exists. And yet the reality is a fragmented and contradictory system that does harm as well as good (sounds very human).

And Maureen Barnes raised the issue of the role that parents play as their adult children’s representatives and adocates:

My daughter insists, most of the time, that I speak up for her, and is baffled and upset if she thinks I am not. It CAN be difficult to be sure you are getting it right – but she would soon tell me if she thought I wasn’t.

Finolamoss commented on the blog and raised some important issues about the role of the Court of Protection and the difficulties that this could entail for families:

The Court of Protection has standard orders, that once an application has been made to them, the parents cannot, on pain of contempt and prison, disclose details of the case, or the services their vulnerable child is receiving.

Finola also made the following statements about the MCA:

They are deemed ‘incapable’ of making any decision, even when they bathe, or who they see.

Yet, the court, vehemently protects their ‘confidentiality’ by gagging their parents and the media

So no one, can disclose the injustice and horror of what is happening to them..

Yet, if these ‘incapables’, were allowed, they would scream to be heard, that they are suffering, abused, and want to be free.

It does make you wonder but I think I’ll come back to that in a later blog.

A Conundrum

So it’s clear that on the blog and on Facebook there was a pretty broad consensus that concerns around confidentiality were usually used by practitioners to silence and exclude families. However the guidance on the handling of confidential information is pretty clear. Rule 2 of the HSCIC Guide to Confidentiality states

Members of a care team should share confidential information when it is needed for the safe and effective care of an individual

The guidance goes on to state:

Individuals may also choose whether confidential information about them can be shared more widely than the direct care team, for example with family members or carers. Where the individual lacks the capacity to decide, it may be judged that sharing confidential information with a carer or family member is beneficial for their care.

When considering whether to share confidential information with a carer or family member, the guidance below should be followed.

• Professionals should establish with the service user or patient what information they want to be shared, with whom and in what circumstances.
• Confidential information should be shared with the carer when the service user or patient has given explicit, informed consent and when the carer consents to be told.
• Where the service user or patient does not have capacity to give valid consent, confidential information should be shared where it is in the person’s best interests.

The nett effect of this is that if families disclose confidential information about an NHS patient’s direct care the practitioner may feel justified in making a best interest’s decision not to inform families and carers of decisions that are being made.

So we have a conundrum it appears that the very basis on which much of the campaign is based could put families at risk of not being involved or informed about decisions that are being made. Although I might be overstating this, because as we all know once our children have become adults, the decision on whether or not to involve us usually depends on how much money we are saving them and in most cases where the family has come into conflict with the provider they will begin to operate on a need to know basis anyway. Then of course, as well as not being informed of decisions about care, families can be subject to the usual gagging orders.

So where does this leave us. The campaign has been successful and raised massive issues about the lives of people in ATUs and about their families struggle to get them home. Most families responded very positively to the suggestion that we should continue the campaign and the success that some families have had in going public indicates that there are times when doing so is clearly the right thing to do as Mark Neary powerfully argued when he said:

By the time I went to the press, I was well versed in the area of best interests and I genuinely felt I was making a best interests decision for Steven. He was about to be moved 300 miles from his home, probably forever, and it felt that the ends justified the means. I don’t regret that for one moment.

Nevertheless, like it or not our anonymous commentator is right that confidentiality is important and I would argue that disregarding this could put families in a difficult position. I could be wrong about this, but it would seem that the difficult area relates to the issue of direct care and it is this in particular that comes under the remit of the HSCIC Guidance. Revealing details about specific interventions, medication, aspects of personal care could all be problematic, but the importance of confidentiality does not mean that people can’t tell the stories of their campaigns to have their daughters and sons released from ATUs and returned to their communities.

So I guess, it could be perfectly reasonable for a parent to state that a setting is working constructively with the family but that a local authority was dragging its feet, or that the setting that their son or daughter attended did not involve families in decisions and that they had received a poor rating from the CQC that reflected this. Or that they had or had not put in place a plan and set a target date for a person’s return to their community.

In this way we would still be able to achieve a balance between properly holding an organisation to account, acknowledging people’s rights to privacy and most importantly to fight against “their wrongful incarceration”. 

 

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Does Confidentiality Matter?

I got this comment on the 7daysofaction and a Ninja Project blog. I think it raises some very important issues so I have decided to blog the response.

Hello. Found your blog following a link from a post about the 7daysofaction campaign. Reading about the campaign has been interesting and stimulating and is a reminder that there are people with real lives and realisible rights behind what can seem complex and intractable cases. The only thing that troubles me about the 7days campaign is that the confidentiality of service users has been compromised. Doubtless families would say that this a position they’ve been forced to by intransigence. Famously, Mark Neary exposed his son Stephen’s situation in the media before the issue was brought before the Court and I’ve seen his endorsement of the 7days campaign. There are some real tensions between different rights in this sort of activism.

I don’t doubt your good intentions about your ‘Ninja project’ but I have to ask two questions. The first is: doesn’t confidentiality matter at all? The second is, since the aim would be to ‘Create an audit trail that will allow the young person, their families and practitioners to track what steps had been taken and thereby identify roadblocks to progress’, how would you prevent the resource being used to identify individual professionals and decisions makers and degenerating into the sort of ‘name and shame’ social media site you can find on Facebook inviting people to trash and vilify individuals?

Found some of the other stuff on your blog interesting and, notwithstanding my queasiness, I am sure the 7days campaign has done some good.

Thanks for your comments they are very important and challenging.

There are a number of things that I would want to say. The first is that I need to point out that I do not speak for, nor do I represent 7daysofaction as a collective. It is a disparate group of people who have been driven together by a shared sense of desperation and the intransigence of organisations that have a significant amount of power over them and their loved ones.

You are right that confidentiality is profoundly important and that the campaign has raised some difficult questions about how the balance between confidentiality and accountability is achieved. This is one of the issues that we will have to resolve if we are to make an idea like the Ninja Project work. However,  I have no doubt that where the person with a learning disability and their choices are at the centre of everybody’s efforts and where a willingness to work collaboratively exists – then appropriate levels of transparency can be found to ensure that greater progress is made in helping people to live in and to be a part of their communities.

But the issue of confidentiality cannot be used to hide organisations from questions about their practice. Take for example the statistics that Chris Hatton published on the use of anti-psychotic medication and rapid tranquilisers. According to the data over 70% of people in inpatient units are prescribed these drugs on a regular basis even though only “195 people have a diagnosis significant enough to require treatment”. Anybody who knows anything about managing challenging behaviour will have significant concerns about what is going on here – but because there is a lack of accountability we cannot prove what is going on – even though it is likely that hundreds of people are being drugged when they don’t need to be.

It’s easy to skim over statistics, which is effectively what happens. But people – people like my son and the sons and daughters of the other people who support the aspirations of 7daysofaction – are being deprived of their consciousness because organisations don’t have the resources or the skills to work out why somebody is having to communicate through their behaviour. And sometimes whether we want to admit it or not people are being deprived of their consciousness because someone somewhere simply couldn’t be bothered to do things properly.

I suspect that this particular human rights issue and others, such as the profligate use of restraint are likely to have a greater impact upon a person’s quality of life than whether or not their parent hasn’t got the balance right in protecting their privacy. Having said that I agree with you that we don’t always get that right. I guess the question is what is the most effective way of dealing with parent’s who haven’t got that balance right  – is it to take out injunctions, stop family members from seeing each other, branding them as toxic or as some sort of risk to their daughters and sons? Or might it not be a better idea, to provide training for parent’s on the challenges that they are likely to face as their children become adults;? How behaviour is likely to change; how the law is different when a child becomes and adult and how the role of service provision changes.

This is what a collaborative approach would look like – it wouldn’t stigmatise – it would find solutions. Talking of not stigmatising you also asked:

How would you prevent the resource being used to identify individual professionals and decisions makers and degenerating into the sort of ‘name and shame’ social media site you can find on Facebook inviting people to trash and vilify individuals?

Two ways. Firstly most mistakes are made by organisations not individuals. So where an organisation has got something wrong it is already required to be transparent about it through the Duty of Candour. Secondly where the mistake or error is the responsibility of the individual then the organisation or appropriate legal authority is required to hold the individual to account. Either way when the system is working effectively and transparently, families shouldn’t need to get involved in fighting for justice. In my opinion most problems in this area occur when organisations aren’t transparent, don’t meet their responsibilities under the Duty of Candour and end up tying themselves up in knots trying to dump the blame on someone else. Our objective is to take that option away from them.

And anyway unlike social media the project would have a quality assurance framework to ensure that it is challenging and evidence based rather than anything else. All of these issues would be included in the Ethics and Good Practice Agreement that I alluded to in the other blog.

You are right these are profoundly complex and challenging issues and I try and remember that most practitioners are doing a job and that they have a right for it just to be a job. I think its important as families that we remember that it is often a very difficult job, made all the more difficult because practitioners are having to perform their role in a system that is under extreme financial and organisational pressure, and now increasingly under pressure from us. But I also think its important for practitioners to try and remember that for families this doesn’t end. When it goes wrong we don’t lose a promotion, or get a written warning or even lose our jobs (although if we are fortunate enough to have jobs that can happen too). For us when it goes wrong our world falls apart and we are faced by a wall of seeming indifference and as you put it intransigence. So personally I am dis-inclined to comment about Mark Neary’s actions after his son had been taken from him. All I can say is that if I had been in his shoes for that year I doubt I would have behaved with the dignity that he did and the least worse thing that I’d likely have been famous for is speaking to the press.

Currently we have a system that is dysfunctional; it doesn’t work for people with learning difficulties, it doesn’t work for their families and I am not convinced that it works for practitioners. I don’t think that any of us are to blame for that. The responsibility for the system’s problems lie elsewhere, so I hope that practitioners will work with us to improve things but even if this particular idea doesn’t happen, the days of shutting us out and hoping we will go away are over.

Postscript

After publishing this blog I got the following response from Becca Lamont Jiggens on Facebook :

When I read the headline, I assumed the comment had been about the confidentiality of the people trapped in ATUs (who are people, not service users!).

I’m autistic and something we see a lot of is parents sharing details about their child’s struggles, reframed as ‘look at what I have to put up with’. That is undoubtedly wrong.

Here the campaign is to free adults wrongly incarcerated against their will; adults who are able to consent to their family sharing the details of their wrongful incarceration.

I was really surprised that the commenter instead brushed over the fact that the subjects of this campaign are human beings, and instead focussed on the risk that incompetent professionals / inadequate professional systems might be identified.

This commenter implies that the risk that a professional who contributed to the wrongful incarceration of a person might be ‘named and shamed’ is more important than the wrongful incarceration of another person – a vulnerable person at that, who these professionals are supposed to be supporting!

That there is the heart of the problem. When it’s OK to give a damn about the professional’s reputation and completely ignore the thousands of people locked up against their will and best interest.

How much more of a fucked up response can you get? Way to miss the whole point of the campaign.