Challenging behaviours? The importance of language

By Daniel Clark, 15th March 2022

On Monday 28^th February 2022, at 10:30am, I observed a hearing (Case no. 1351116T Re: NC) before DJ Eldergill sitting at First Avenue House London.

In addition to the judge and the two barristers (counsel for the Local Authority, Michael Paget, of Cornerstone Barristers,  and counsel for NC via the Official Solicitor, Simon Maddison, of St John’s Buildings), NC’s social worker was also present.

I was the only public observer at this hearing, which was a bit daunting at first but I soon relaxed as a result of DJ Eldergill’s welcoming demeanour. 

This hearing was exclusively virtual, and held on MS Teams. I received the link 13 minutes before the hearing, and then received the parties’ Position Statements 10 minutes before. As they were both quite short, this gave me the opportunity to read through them, and they gave  me an insight into what was going to be discussed.  

When DJ Eldergill entered the hearing, he acknowledged my presence and asked if I had received the Position Statements. When I confirmed that I had, he then explained that he was sure I knew (but wanted to reiterate) that I could not record the hearing, and nor could I share the Position Statements or publish anything that could risk identifying NC. He checked I understood this, and then provided a brief overview of the background to the hearing. I was very grateful for this, and also felt that DJ Eldergill’s engagement with me as a public observer was exactly the way open justice should work. 

The hearing                                                               

NC is a 60-year-old gentleman living with schizophrenia and (according to the Position Statement of the Official Solicitor) alcohol-related brain damage. DJ Eldergill first visited him in 2019, when he was residing in a care home, and in a subsequent hearing it was decided  that it was in his best interests to move to a “reablement”^[1] placement. 

Currently, NC lives in supported living. However, in the words of DJ Eldergill, the situation has “significantly deteriorated”. NC’s behaviour is inconsistent, and he is generally incontinent. He lives in soiled clothing, lies in soiled bedding, and urinates and defecates in his bedroom. 

It was the view of the Local Authority that NC would best be supported in residential care (the same home he resided at in 2019) but the Official Solicitor felt that this was not in his best interests at the moment. DJ Eldergill did note that when he’d previously lived at the home, NC “seemed to have incorporated some of the staff there into delusional beliefs…He seemed to be highly suspicious of staff there”, though it was clarified by counsel for the Local Authority  later in the hearing that NC now sees the benefit of having been there. 

Counsel for the Local Authority argued that the current placement is “sub-optimal”, and that NC’s current behaviour is “distressing” (to whom was not made clear). Even though residential care is the most restrictive option, the Local Authority position was that it is in NC’s best interests to move there. Counsel for the Local Authority also explained that there’s a time constraint, telling the Court that the placement as an option “runs out today”, and the Court would need to make a declaration today. No reason for the  need for such a rushed decision was provided, and neither Position Statement makes any reference to the time constraint. 

The position of the Official Solicitor was that residential care was too restrictive. As there is the possibility that moving to a residential placement could be a permanent move, counsel argued that it was in NC’s best interests to remain where he was, especially as he is only 60, so his age is not typical of a care home population.  Counsel stressed that, in his view,  the current placement is not sub-optimal, and that the provider had not actually said they cannot meet NC’s needs.

With regards to his continence, it was noted that issues with continence only arose when he moved to his current placement. The Official Solicitor felt that “[NC] ought to be given more time to settle in”(he had only lived in the supported living placement since December 2021, as his previous supported living placement was closed for refurbishment). During this period of “settling in”, assessments from continence nurses and Community Mental Health Team (CMHT) would be sought. 

At this stage, DJ Eldergill agreed there was a need for further assessments. 

He recalled that  there had been a question about whether NC could have  bladder cancer,  after passing some blood in his urine. At the time, NC did not “cooperate” with medical investigations, and did not want to see a urologist. An order was not made to transfer NC to hospital for investigation under anaesthetic because professionals explained that blood in urine can sometimes have no known cause. However, DJ Eldergill did stress that incontinence can be caused by bladder cancer, and was a potential explanation for his current problems.

DJ Eldergill also remarked that he recalled a potential problem with NC’s thyroid, the symptoms of which might mirror a psychosis disorder. However, this had not been investigated, and DJ Eldergill felt that the matter should be followed-up by an endocrinologist. He also agreed that the CMHT should make an assessment.

The problem is that this “will take months rather than weeks”. However, “the problems are quite pressing…I think he’s struggling”. Therefore, DJ Eldergill explained that he was going to “side with the Local Authority…The situation has significantly deteriorated. It would be kinder for [NC] to move to [the care home]”. It’s relatively unusual for judges to make decisions that run counter to the position taken on P’s behalf by the Official Solicitor. I think this was possibly motivated by an acknowledged need for NC to receive immediate support, with what followed being a way of incorporating the position of the Official Solicitor into the move (and not ‘closing the door’ on the possibility of NC moving to a less restrictive placement in the future).

DJ Eldergill explained that he wanted to understand the cause of the problems that NC is facing, and how best to support him. Given that his “challenging behaviours” (I’ll return to that term later) could be either mental or physical in origin, the judge said that he wanted the problem with NC’s thyroid to be investigated. There was the possibility of a Section 49 order being made to the hospital, in order to ascertain how NC’s thyroid contributes to his physical and mental health. The judge  also asked for checks to be made with the GP again, about what can be done about the possibility that NC has cancer.

At this stage, as proceedings were concluding, DJ Eldergill asked NC’s social worker whether he had anything to add. The social worker explained that “attempts to regain independence” in a supported living placement haven’t worked: NC’s mental health has deteriorated. Whereas before he would previously “frequent” the toilet, he now “doesn’t make an effort” to go to the toilet. 

In concluding, DJ Eldergill directed that investigations be completed, so as best to understand what’s going on for NC before deciding what happens next. This received no objection from counsel, and a 2-hour hearing was arranged for 7^th July 2022 (with a view that the hearing can be vacated if agreement on NC’s best interests is reached before then). 

The importance of language  

It was quite clear to me throughout this hearing that DJ Eldergill was motivated by compassion for NC, and a desire (as much as reasonably possible) to resolve the problems that NC faces. 

However, I was disappointed that the term ‘challenging behaviours’ was used at various times throughout the hearing, and was also used in the Position Statement of the Official Solicitor. 

The phrase ‘challenging behaviour’ has been widely critiqued. It emerged in the 1980s to “describe the often puzzling and difficult behaviours of people with significant intellectual disabilities. It replaced a whole host of terms such as…problem behaviour” (p4). In recent years, however, concerns have been raised that “the term has sometimes become used as if it was another diagnosis” (p4).

Another problematic element of the phrase ‘challenging behaviour’ is that what is challenging to one person may not be to another. One example of this is grinding of teeth. If you thought this was being done on purpose, you would think the person grinding their teeth was challenging you. However, when the teeth grinding is accepted as a character trait, the act becomes something that you personally find a challenge. In this way, the perception of the behaviour changes; it (and the person) is no longer challenging but the act is something that challenges you. 

There is a suggestion that the term ‘behaviour that challenges’ is preferable to “challenging behaviour” because it conveys the extent to which something is only challenging within a particular social context. One person may be challenged by teeth grinding whilst another doesn’t even notice. Allow me to illustrate the importance of social context in defining what is a ‘behaviour that challenges’. In response to an early draft of this blog, Celia Kitzinger pointed out that she was engaged in ‘behaviours that challenge’ when she held hands with her same-sex partner in public during the 1970s and 1980s. Holding hands is not, in-and-of-itself a ‘challenging’ act – until other people are introduced into the equation, people with specific views about how things ‘should be done’ and what is and isn’t acceptable public behaviour.

I find the phrase ‘behaviours that challenge’ useful because it leads to an immediate follow-up question: who is being challenged? Consider a gentleman who becomes highly distressed during personal care interventions (I have supported a number of people who experience this.) He is frequently incontinent but is unable to recognise a need to change his clothes. When staff attempt to assist him, he hits them. There is no question that this hitting is done ‘on purpose’, and is in service of a goal (stopping the intervention). So, if we refer to this as ‘challenging behaviour’, we stray very close to saying that this gentleman himself is a challenge; a problem to be solved.

However, this gentleman is expressing something: he is uncomfortable in the situation, and wants to be able to go about his business even if his trousers are wet. Therefore, the hitting is an act that staff find challenging but the gentleman himself is not a challenge. Furthermore, this phrasing also easily reveals to us that the gentleman in question is also being challenged by the staff’s actions. His ‘behaviour’ is a perfectly reasonable reaction to having your trousers pulled down. 

At this stage, I want to take a brief pause. In an early version of this blog post, I went on to defend the use of the term ‘behaviours that challenge’. Gill Loomes-Quinn provided extensive feedback on this, and wrote that she doesn’t like the term ‘behaviours that challenge’ either. In fact, she wrote that it ‘risks taking us into “deck chairs on the Titanic” territory’. A change in terminology does nothing to challenge the arrangements that position somebody with a disability as a cluster of behaviours that need to be “managed”. 

This got me thinking about what terms I actually use in my day-to-day work (I work on a ward for people living with dementia who have been detained under the Mental Health Act). When someone is banging on doors and windows, I never say that they are “exhibiting challenging behaviours”. When someone has called me a “poof” (or something much stronger), I never refer to this afterwards as a “behaviour that challenges”. And when someone has hit out during assistance with personal care, I haven’t described this as a “challenging behaviour”. 

Instead, I attempt to go some way to understanding the emotion and intention behind these actions. Somebody banging windows is possibly bored and wants to go out; somebody calling me a “poof” is possibly frustrated with my actual or perceived circumvention of their course of action; somebody hitting out during assistance with personal care is possibly feeling threatened. Then, I can attempt to support that person with the situation they are in. 

I have suggested ‘possible’ explanations for certain actions because the understanding changes from person to person, from context to context. To refer to an action as a ‘challenging behaviour’ is an affront to somebody’s humanity, their autonomy, and their self-determination. Of course, sometimes an individual is intending to challenge because they dislike either what is being done, or what they perceive is being done, to them. However, to refer to this as a ‘challenging behaviour’ is to suggest that the person and their behaviour is the problem. It ignores the intention and motivation behind their actions, and constructs the situation as a problem to be solved. With framing such as this, we step very close to simply wanting to resolve the behaviour whilst neglecting the ‘bigger picture’. 

In this specific case, referring to NC urinating in his bedroom as a“challenging behaviour” does not (in and of itself) acknowledge the potential medical and social issues that have led to this action. It gives no insight into his character or the unique circumstances that have led up to the current situation. 

The same can be said of the reference to NC not wanting to “cooperate” with previous medical investigations. In using this term, his agency is diminished. It is instead seen as combative force against the agency of the medical staff attempting to assess him. Implicitly, it is their agency that is seen as valid and a priority but it is being ‘challenged’ by a ‘behaviour’ that needs to be managed.

I am not suggesting that the terms used affected DJ Eldergill’s judgment: he was clearly anxious to understand the root cause of NC’s current situation, and to identify potential solutions. In other words, despite the language he used, DJ Eldergill still made a decision that paid proper attention to the humanity of the person with a disability.

It’s also important to point out that this type of language is not just found in the Court of Protection. The NHS has a webpage titled ‘how to deal with challenging behaviour in adults’ which, quite shockingly, refers to ‘behavioural outbursts’. Everybody can point to examples of their own ‘behavioural outbursts’ but, the NHS tells us, ‘challenging behaviour is often seen in people with health problems that affect communication and the brain’. So, my ‘behavioural outbursts’ need no further exposition but ‘behavioural outbursts’ in those living with a cognitive impairment need to be managed (and even get a webpage on the NHS website to help everyone to do just that). 

Language such as ‘challenging behaviours’ and ‘behaviours that challenge’ positions the person as the problem. It does not acknowledge the systemic circumstances in which they are embedded; circumstances that present the person with a disability as somebody who needs to be ‘managed’ because others (professionals, carers, clinicians, and so on) have a right not to have to engage with this kind of behaviour. It’s important that we do not lose sight of the reality of the social world that we inhabit.

Daniel Clark is a paid carer.  He is also deputy director of Backbench, an unaffliliated open platform blog that publishes a range of articles about current affairs. He has recently completed an MA in Political Theory. He tweets @DanielClark132

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^[1] Reablement has been defined as ‘services for people with poor physical or mental health to help them accommodate their illness by learning or re-learning the skills necessary for daily living’.

Photo by Steve Johnson on Unsplash