Positive & Proactive – Did I miss the Proactive bit?

Last week saw the release of “Positive & Proactive Care: Reducing the need for restrictive interventions” by the Department of Health. This work is essential and warmly welcomed. The challenge of attempting to produce guidance for such a wide range of people and services is acknowledged. Please note whilst my comments here may be critical, I fully support the intentions of this work and the programme. This guidance is a great first start to this important piece of work. My comments here discuss my concerns that may hopefully be addressed with some of the follow-on work.

Confusing abuse with physical interventions

The forward discusses how Winterbourne View highlighted restrictive interventions have been used, not as a last resort, but to cause pain and humiliation. It needs to be remembered the abusive practices shown at Winterbourne View were not recognised restrictive practices. Castlebeck used an intervention package called MAYBO. This is a BILD accredited intervention and what was seen in the Winterbourne View documentary was not MAYBO. This intervention package would in no way advocate trapping a person under a chair and stepping on their wrist. This is abusive and not using restrictive interventions. When restrictive practices are used correctly they can be supportive and therapeutic. I am concerned describing abuse as the use of restrictive practices confuses the issue and entices fear from the general public.

A linear understanding of situations requiring restraint

Parts of the guidance appear to not reflect the reality of real life situations. The guidance states that restrictive interventions should only be used as a last resort when all other alternatives have been attempted. This implies a very linear occurrence of situations where restraint is needed where there will always be opportunities to intervene before the incident occurs. In an emergency situation it will often be essential to use restrictive interventions first, as a short term measure, but it is agreed needs to be part of a wider plan to avoid these situations in the first place. For example, if you are supporting a young man with autism who runs into the road when a dog barks you may need to physically stop him to prevent him getting run over or causing an accident. When you know this is a risk you need a plan to teach tolerance to dogs barking and how to safely run away. Using restraint in these situations is not based on the legal frameworks of the Mental Health Act or Mental Capacity Act described in this document, it is based upon duty of care, which is absent from this guidance with only a brief reference to common law.

The guidance states that staff should only use restrictive interventions they have been trained in. Unfortunately the reality is that this is not always possible. When a fist, a chair, spit, poo, or anything else comes flying at you people act instinctively and do what they need to in order to protect themselves. It is then after this people remember the training and re-position themselves into the correct physical interventions. So long as the instinctive responses are reasonable and justified people should not feel reprimanded for this.

Do all restrictive practices lead to reduced liberty?

I believe some restrictions increase liberty and freedom. I previously supported a woman with learning disabilities and diabetes. She had a leg ulcer. She couldn’t understand the hospital procedures to examine and treat this. She was understandably frightened by the situation. A multi-agency meeting agreed it was in her best interest to use physical intervention so as she could be treated and not lose her leg. During the actual procedure the woman held on to us as we held on to her. She found the closeness of familiar people supportive and helped her to deal with this distressing situation. Physical interventions don’t always have to be a negative thing, and I am not sure this guidance covers these situations.

Is not being restrictive neglectful?

The guidance states

“Restrictive interventions are being used which may amount to assault or battery (if the person has mental capacity to refuse what is proposed), willful neglect or ill treatment of people lacking mental capacity (an offence under section 44 of the MCA) or unlawful deprivations of liberty.”

It could be argued that not responsibly using approved physical interventions is exactly the same. If a person needs a physical intervention in order to have their nails cut and this is not done in a planned and careful way it will result in health problems, difficulties with mobility, and limitations on the person’s ability to go out. I am concerned that by not discussing when restrictions are necessary this may lead to policies of inaction and people will be neglected as supports are afraid of what will happen if they plan to meet complex needs with long term goals in mind.

Exceptions to involving people we support

Involvement and participation of people we support and their families is an essential consideration that has been included. However, implementing this is not easy. Not many people will agree to restrictions being put in place. Some may agree in a planning stage, but when they are used they change their mind. If we are implying this is related to consent then people can change their minds at any time, so if this happens should the intervention stop?

As with capacity, I agree that we should all begin at the starting point that the person should be involved, but with the understanding that this may not always happen. It is then for the team to present a defensible position as to why this hasn’t been done.

I have worked with people with Prader Willi Syndrome who have required restrictions be implemented to limit their access to food. The person was informed what these restrictions were, and we considered how the restrictions could be applied in the least aversive way. However, we couldn’t fully involve them in the planning as this would lead to the plans being jeopardised by the person. I am sure colleagues working in forensic settings can also think of similar situations where participation from the person is not a good idea. This is not to say that participation shouldn’t be considered, it should always be at the forefront of our thoughts and our starting point that they will. But it would have been helpful to have these exceptions explored further and an agreement about when this isnt possible.

Seclusion may be a bigger issue

The guidance states staff must not use seclusion except for people who are detained under the Mental Health Act. The definition of seclusion the guidance gives is:

“The supervised confinement and isolation of a person, away from other users of services, in an area from which the person is prevented from leaving.’Its sole aim is the containment of severely disturbed behavior which is likely to cause harm to others.”.

In services for people with learning disabilities seclusion happens a lot more than is recognised. Services create things like blue rooms, or chill out rooms where people go when they are distressed. Interventions such as planned ignoring are used without a full assessment of the behaviour and without a plan to teach a functionally equivalent skill to the person. People create “trigger free” environments where people are safe and happy in their own space but are never supported to increase their experiences so never go out. People get banned and excluded from places that promote their inclusion. Some people never leave their own homes in the fear of unpredictable behaviours. All of these examples meet the definition given. Seclusion is a huge issue for us, but we need to be mindful that seclusion doesnt just mean a padded room. Some of this is covered in the guidance under “long-term segregation” but there is still a risk many people who support people with learning disabilities will not see this as applying to them when it does.

Monitoring the reduction of restrictive interventions – what will you be counting?

The onus upon services and boards to have restraint reduction plans is warmly welcomed and I believe if many of these systems were in place Winterbourne View would not have happened. But we need to be clear what we are looking at with reduction plans. Reduction plans need to be individual based. Service based reporting will not show the differences on an individual level. An acute mental health admissions service may be averaging 5 restraints a day with ups and downs, but never a total reduction. By looking at this on a service level this is all you will see. What you wouldn’t see is that for each person there is a stable reduction over time, because each new admission pushes the services figures up. The importance of individualised data is essential.

Is it describing PBS?

The section on PBS is great and the thinking of a global use of PBS is very exciting, but the definition of PBS used is not familiar to me. It describes that PBS is based on understanding the context and meaning of behaviour, and this leads to informing the environmental needs the person has. It mentions skills but this reads as though it is skills of the support and not of the person. It doesnt describe the skills required to use PBS. To genuinely use PBS it is important that somewhere in the system there is someone trained to MSc level in ABA to ensure the functional assessment is done correctly, and it requires strong leadership to keep the focus on what we are enabling people to do rather than what you are trying to prevent. The section on PBS describes that a PBS framework is universally applicable, but it also says it requires a skilled assessment. We know that there are a limited range of people who have the skills to do this in learning disability settings, and there would be an even bigger void in these skills in the mental health and older persons services.

My favourite definition of PBS is:

20140315_150124-1 (2)

“An approach that blends values about the rights of people with disabilities with a practical science about how learning and behavior change occur”  Horner, 2000

This definition is clear that PBS involves the science of learning and how supporting people to learn new skills. As a result challenging behaviours reduce as a naturally occurring side effect, and this is what makes PBS what it is.

The definition given by Gore et al in the latest edition of the International Journal of Positive Behaviour Support is:

“Positive Behaviour Support is a multicomponent framework for:
a) developing an understanding of the challenging behaviour displayed by an individual based on an assessment of the social and physical environment and broader context in which it occurs
b) with the inclusion of stakeholder perspectives and involvement
c) using this understanding to develop, implement and evaluate the effectiveness of a personalised and enduring system of support and
d) that enhances quality of life outcomes for the focal person and other stakeholders.
Gore et al 2013

Again, this definition implies a constructive focus for PBS, rather than a reactive or preventative behaviour management plan. It is unfortunate this guidance is not reflecting these definitions.

A focus on environments

The guidance discusses challenging environments that can cause behaviours, and this is true, but it is largely ordinary environments that cause challenges for people. For example, some people with autism may find a supermarket challenging. They can be busy, contain unpredictable children/adults/trolleys, be filled with artificial flickering lights, and a range of strange noises. A genuine PBS approach would not look at helping people who find supermarkets aversive to avoid them – this goes back to seclusion by another name. It would look to teach the person skills and supports so they can reduce and cope with the aversives, e.g. go shopping at quiet times, consider if sunglasses or headphones would be helpful, start shopping in smaller shops in preparation for the bigger ones, have a floor map and plan the shopping route, and so on. If it is awful barren environments that cause problems then the solution would be to just stop making them, but it is all environments that need to be considered based upon the needs of the person you are supporting.

Some people with autism may need minimalistic environments. This is creating low arousal environments with minimal distractions, so if the person is trying to learn how to do the washing up there isn’t the radio in the background, whirring fans, people chatting, and anything else that would reduce their ability to focus. This guidance would appear to suggest these low arousal environments should not be made.

Behaviour support plans?

The guidance advocates the use of behaviour support plans. Too often this term is misapplied. A behaviour support plan needs to detail the behaviours the plan wants to support. What is usually produced instead is a risk management plan, or behaviour reduction plan and this is exactly what is described here. These include primary prevention of the challenging behaviour (all about avoiding things thought to lead to challenges), secondary prevention of the challenging behaviour (de-escalation), and reactive management of the challenging behaviour (what to do when behaviours occur). These are still risk management, behaviour reduction plans and not behaviour support plans. They are reductive without the constructive skill building and enablement elements that are essential to PBS. Risk management plans are also essential, and this three stage approach is a sound format for doing this, but it isn’t a behaviour support plan.

A key element of PBS is to stop focussing on the challenges and what you don’t want people to do, to focus on what we DO want to enable people to do. The risk management approach leads to everyone being on guard in the protective stance position waiting for an incident to happen, and never daring to try new things. Preventative is not proactive. The Donnellan and LaVigna (1988) model is widely known about and achieves this. It is interesting that this guidance has not used this model, referring to risk management model instead.

The guidance states that CQC will be responsible for measuring the quality of behaviour support plans. It will be interesting to see what the criteria is that they use for this.

Recovery for all? PBS for all?

The guidance suggests all services should use “recovery-based approaches” in accordance with the principles of Positive Behavioural Support. This statement, whilst it sounds good at face value, it is a little challenging in itself. Recovery is a model for mental health. We do not want people to recover from being old, and you dont recover from dementia. This is why older peoples services have the re-enablement model instead of recovery. We don’t want people to recover from their learning disabilities, we want to enable them to enjoy life to the fullest regardless of their disability and to learn new skills.

In the same way as Recovery doesn’t apply to everyone, positive behaviour support wont apply to everyone either. For people in mental health services, recovery may partly involve learning behaviours and skills to manage the symptoms of their mental illness, but there are many other things involved too, and recovery is about leading a full and healthy life, which doesn’t need to involve learning new behaviours, which is a central part of PBS.

I personally dont like using the word “behavioural” in the term Positive Behavioural Support as is done in this document. In PBS the words ‘behavioural’ and ‘behaviour’ are used interchangeably, but depending upon which one you use it implies a different meaning. Whilst using the word ‘behavioural’ maintains clear links with Applied Behaviour Analysis, the science that underpins it, it also puts the focus on the person implementing the intervention rather than the person we are supporting. It leads to the assumption if you are not doing positive behavioural support, you must be using negative behavioural support, suggesting that it is the science that is positive or negative. It also leads to a suggestion that we are positively supporting negative behaviours. This is not how PBS is intended. In contrast, the term positive behaviour support implies that we are supporting the person to develop behaviours that will have a positive impact upon their quality of life.

A missed opportunity?

The guidance pays homage to voluntary physical intervention accreditation schemes, such as the one run by BILD. However, it does not build on this or make accreditation a mandatory requirement. There are some dodgy physical intervention packages out there that do not want to follow an accreditation scheme and actively oppose these. You would think services would ask why is there such opposition from providers of these packages and that would put them off purchasing them, but their business continues to roll in and the dubious practices prevail. It is unfortunate that this guidance has not taken this opportunity to make this more mandatory.

But there is hope

After reading this guidance, I went on the read the accompanying Skills For Care document “A Positive & Proactive Workforce”. This document goes someway to responding to some of the concerns here. It describes restraint being used in a safe, responsible, and proactive way. Many of the misunderstandings of PBS are carried over, but it acknowledges that PBS may not be appropriate for everyone, it uses a table on the key components of PBS from the Gore et al article, and it makes reference to the BACB code of conduct which describes the safe and ethical use of functional assessments and constructive approaches. This is a helpful reminder that the DH document is just the start of a programme of work that is much needed and long overdue. Whilst there may be concerns about misconceptions, a lot of this is moving things in the right direction. As I stated at the start, in this area it will be near impossible to create guidance that is agreeable to everyone, and it is a very emotive topic. This is a good start and there will hopefully be opportunitiess to address the misconceptions along the way.