Just Ordinary Parents

It’s almost 20 years since my youngest son got diagnosed as being on the Autistic Spectrum and through the course of those years I’ve lost count of the number of times one therapy or another has been proclaimed as a game changer for the symptoms of autism. Portage, Structured Teaching, Lovaas, PECs, Applied Behavioural Analysis and more. So when I woke this morning to reports on the BBC (at 41 minutes ) of research by Kings College, University of Manchester and Newcastle University into an early intervention (PACT) that could significantly reduce the severity of a child’s symptoms I was extremely sceptical. There were a number of things in the interview that I liked and some that I didn’t like – most significant of which was the researcher’s presumption that families aren’t already tuned into their child’s attempts at communication. I then saw an appalling headline on the BBC website “’Super-parenting’ improves children’s autism “ so I thought I’d better go away and read it and I was pretty relieved to discover that I could download it for free.

Despite the shaky start – in certain respects it’s very good and on balance I think it’s an important piece of research into a promising approach. I like that the initial focus is on the child’s attempts at communication. I like that they recognise that early intervention is important and have provided evidence to support this ( although Damian Milton has raised a question on twitter about the method ) and I like the emphasis on the importance of the parent child relationship. It is also good that the approach is rooted in our everyday lives:

The theoretical advantage of this approach over direct therapist–child therapy is that it has potential for change in the everyday life of the child, in which much social learning takes place

What is not so good is that the language of the study comes across as patronising and expert. And the reporting implies that if we were “super” parents our sons and daughters would be less autistic and that only the appropriate clinicians have the appropriate skills to be able to prevent this from happening.

In my experience the people most able to pick up on their children’s attempts at communication have almost always been parents. But these parents’ are also the ones who are in the frontline of their child’s care and the emotional challenges of a recent diagnosis. There is no time for reflection just the struggle of dealing with now. Imagine being a practitioner without supervision – it’s a bit like that – but much more intense because it’s not your job you are struggling with, its your child.

In order for parents to be what they can be, you don’t have to train them to be “super parents” you have to support them and work with them, and if you support them early and with a multi-disciplinary team you will probably get the kind of progress that the study talks about regardless of the approach. Teams like FISS in East Sussex have been doing it for years and I have no doubt that there are others using different approaches. It reminds me of something a very experienced educational psychologist once said to me about ABA – that if you put that amount of effort into any intervention it will make a difference.

Having said that the focus upon the child’s communication attempts, the child – parent dyad and the everyday life setting is really promising and I think it’s very important. It’s just a shame that the method on this study wasn’t more participatory then they might have avoided the slightly unpleasant connotations for parents – who are just trying to be ordinary.

 

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The Naughty Step

This is the #7daysofaction Transforming Care naughty step – or to put it more precisely this is the list of inpatient providers who (according to Assuring Transformation data for  May 2016 ) have not been able to reduce the number of inpatients that they have in their setting between January and May 2016 – which at this point is the only period for which NHS England has published the stats.

We should point out that for some of these providers any reduction in numbers is either not possible or is not planned but for most it represents a lack of progress in implementing Transforming Care.

NORTH EAST LONDON NHS FOUNDATION TRUST

LEEDS AND YORK PARTNERSHIP NHS FOUNDATION TRUST

NOTTINGHAMSHIRE HEALTHCARE NHS FOUNDATION TRUST

NORFOLK AND SUFFOLK NHS FOUNDATION TRUST

NORTHAMPTONSHIRE HEALTHCARE NHS FOUNDATION TRUST

OXLEAS NHS FOUNDATION TRUST

SOUTH WEST LONDON AND ST GEORGE’S MENTAL HEALTH NHS TRUST

NORTH ESSEX PARTNERSHIP UNIVERSITY NHS FOUNDATION TRUST

SOUTH STAFFORDSHIRE AND SHROPSHIRE HEALTHCARE NHS FOUNDATION TRUST

BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST

2GETHER NHS FOUNDATION TRUST

CENTRAL AND NORTH WEST LONDON NHS FOUNDATION TRUST

SOUTH LONDON AND MAUDSLEY NHS FOUNDATION TRUST

AVON AND WILTSHIRE MENTAL HEALTH PARTNERSHIP NHS TRUST

LANCASHIRE CARE NHS FOUNDATION TRUST

EAST LONDON NHS FOUNDATION TRUST

DEVON PARTNERSHIP NHS TRUST

BERKSHIRE HEALTHCARE NHS FOUNDATION TRUST

SUSSEX PARTNERSHIP NHS FOUNDATION TRUST

CHESHIRE AND WIRRAL PARTNERSHIP NHS FOUNDATION TRUST

ROTHERHAM DONCASTER AND SOUTH HUMBER NHS FOUNDATION TRUST

DERBYSHIRE HEALTHCARE NHS FOUNDATION TRUST

BIRMINGHAM AND SOLIHULL MENTAL HEALTH NHS FOUNDATION TRUST

GREATER MANCHESTER WEST MENTAL HEALTH NHS FOUNDATION TRUST

KENT AND MEDWAY NHS AND SOCIAL CARE PARTNERSHIP TRUST

DERBYSHIRE COMMUNITY HEALTH SERVICES NHS FOUNDATION TRUST

BRADFORD DISTRICT CARE NHS FOUNDATION TRUST

SHEFFIELD HEALTH & SOCIAL CARE NHS FOUNDATION TRUST

BLACK COUNTRY PARTNERSHIP NHS FOUNDATION TRUST

VISTA HEALTHCARE INDEPENDENT HOSPITAL

EQUILIBRIUM HEALTHCARE LTD

MENTAL HEALTH CARE (UK) LTD

CUROCARE LTD HEAD OFFICE

GLEN CARE

LIGHTHOUSE HEALTHCARE LIMITED

TURNING POINT

JEESAL AKMAN CARE CORPORATION LTD

CYGNET HEALTH CARE LIMITED

CHESWOLD PARK HOSPITAL

ALPHA HOSPITALS

It includes the provider to one of our young people who have the following rather bold statement on their website.

“We provide an individualised and comprehensive care pathway that leads to a smooth transition back to the local community or a service of supported living and greater independence.”

Really?

One of the brutal realities of the current situation is that the “assessment”, “care” and “treatment” of our families’ sons and daughters is an enormous source of revenue and profit for many providers and Sam Sly will be writing about that for #7daysofaction later in the week.

But in the longer term, over the coming months and years we are going to be subjecting the performance and actions of providers to greater levels of scrutiny than they have ever been subjected to; and we are currently developing the provider resource that will allow us to do this. It will include this kind of data, CQC report findings, feedback from families, relationships with commissioners and Transforming Care Partnerships and over time it will help us to identify where the road blocks to progress in implementing Transforming Care are located.

Welcome to the future – the days of hiding behind glossy brochures and websites are over.

Inhuman Treatment

One of the things that differentiates the way that families interact with their daughters and son’s with learning disabilities and or ASD, is the extent to which we consciously and subconsciously shape the culture of our everyday lives in order to mitigate against the potential for what you might call challenging behaviour.  We know how to shape the day. We know how to manage the environment. We know the boundaries that can be challenged and those that must be respected. For most use of restraint and medication are rarely an option. Much of the time we will do this without support.

But in in-patient provision the situation is almost the opposite. According to statistics put together by Chris Hatton for the last campaign from the 2015 Learning Disability Census: 72% of people in in-patient provision where prescribed anti-psychotic medication in the 28 days prior to the Census date; 34% had been subject to physical restraint and 13% had been placed in seclusion. There seems to be little evidence of culture and environment being shaped to limit the possible incidents of behaviour that you might find challenging to manage but a lot of evidence of force and medication being used instead.

It reminded me of something I’d read in one of the articles that Mark Neary has written for the next Seven Days of Action:

Edward recalls that his treatment consisted solely of a huge cocktail of anti psychotic medication and because he tried to escape on several occasions, his treatment plan included the line, “Time in the seclusion room to be used as a teaching on the importance of cooperating with the medication treatment”. As Edward said, “I don’t think I can be treated. I’ve got autism”.

In this instance seclusion is self-evidently being used as a way of punishing an individual for failing to comply with the organisation’s regime. There is no adapting the organisation to Edward’s ASD, there is simply punishment, coercion and a requirement to accept the prescribed medication.  Whilst there are occasions when a seclusion space can be used to de-escalate a situation and allow an individual the time and space to manage or be supported to manage their levels of arousal, the use of seclusion as a teaching tool on “the importance of co-operating with the medication treatment” has to be seen for what it is – cruel and inhuman treatment.

Another of the articles looks at the issue of danger and tackles head on safety and wellbeing in in-patient provision. It provides us with a number of profoundly disturbing examples of people being subjected to cruel, inhuman and degrading treatment. One example is provided by Julie who describes how Jamie had had his arm broken, Julie concludes by saying:

So here we have a situation where a vulnerable young man was put in a situation that he could not tolerate, asked to leave it and, when told he couldn’t, reacted in an entirely predictable, distressed way. The response of his carers was to break his arm and then not take him to hospital for 24 hours, ignoring the repeated concerns from family along the way.”

This quote is taken from Day Four: Danger and when you read it, it is clear that any practitioner who had incorporated Julie’s expertise into their practice would have been able to avoid creating a situation that distressed Jamie. Instead there was a presumption of compliance, an attempt at coercion, a confrontation and resort to excessive force. This is not indicative of an organisation that adapts its approach to the needs of individuals. Taken together with the data, the articles for this coming week paint a disturbing picture of a world that brings us worryingly close to what the United Nations defines as cruel, inhuman or degrading treatment or punishment.

Article One of the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment states:

For the purposes of this Convention, the term “torture” means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.

For some people in this form of provision; being drugged, restrained or isolated for failing to comply with an organisation’s regime is a relatively common occurrence and whilst the term torture might seem excessive – describing some of the treatment of people with learning disabilities and or ASD as cruel and inhuman is not.

But let’s be clear – not all of the care provided in in-patient settings is cruel and inhuman far from it. Some of it is good, some of it is very good but in the stories from the families of young people detained. We see significant indicators of practice that too often falls short of what a civilised country has a right to expect for its citizens. Repeatedly we hear how people have deteriorated and in the statistics we see evidence that the use of force and the reliance on medication is systemic.

As families we view the evidence we see, and the stories of other families with genuine horror. We know that some organisations can hide a whole range of incidents behind closed doors and when that fails to work. They can silence challenges to their practice behind a veil of privacy.

As families we have to balance all of the rights of our sons and daughters. We recognise their right to privacy just as we recognise their right to liberty and freedom from cruel and inhuman treatment. In a different world a mother could stand in front of a judge and explain why her non-violent, non- medicated strategy for managing her son’s distress was more in keeping with the principles of the Mental Health Act Code of Practice than an injection of rapidly acting tranquiliser.

But until then, we will just have to rely on the cleansing power of transparency.