This is the first in a series of articles in which Professor Andrew McDonnell attempts to outline the transition from locked wards in hospitals to community placements, in collaboration with Lives Through Friends.
In 2011, the BBC Panorama Winterbourne View documentary caused great public outcry and a commitment from the government to reduce the number of beds in secure units for individuals in mental health crises. Despite this effort, today we have even more beds in secure hospital settings for distressed individuals, as well as very lengthy and laborious processes that often prevent a person from moving out of these placements. This article outlines some of the steps involved in moving people from places of safety back into the community where they belong.
As a Clinical Psychologist, I have over 30 years of experience supporting people with intellectual disabilities and autism. I have been lucky that my work as a practitioner has been not only at a one-to-one level, but also involved in the design of individualised community supports for people. I am passionate that people with complex trauma need to have environments and supporters which focus on stress reduction and trauma-informed practice. In my career, I have been involved with over 70 community-based supports, mostly catering for people with high-risk behaviours of concern. There have been many successes, and some that were less successful, where my colleagues and I had to learn from our mistakes.
Developing individualised systems of support requires persistence, confidence, and most importantly, time. People who are traumatised do not become less traumatised overnight. The Low Arousal Approach, developed by myself and my colleagues, emphasises that it is often our behaviour as supporters that needs to change. When confronted with distressed individuals who may be verbally or physically aggressive, communicating and creating a calm atmosphere is essential (McDonnell, 2019). This means accepting behaviours that society may deem ‘inappropriate.’ This approach therefore requires a mindset change, and I would recommend the work of Mona Delahooke in the US Psychologist whose book ‘Beyond Behaviours: Using Brain Science and Compassion to Understand and Solve Children’s Behavioural Challenges’ (2019) looks at how we can see the stress and the trauma within an individual, and empathise with them when they become distressed. On a personal note, it has been my experience that understanding a person's trauma helps me to be more accepting of their behaviour, at least in the short term.
Independent commissioning and brokerage are essential parts of the process of helping people move from hospital to community-based supports. Traditionally, services are sourced for individuals offering from existing larger provider organisations. In many parts of the country, there are approved lists of providers, which often leads to tendering processes. Sadly, this can often lead to cost considerations where quite often the cheapest bid gets the work. Independent commissioning and brokerage circumvent this system entirely. An independent broker is appointed to agree on a budget and source an organisation that fits the individual’s needs. Whilst larger organisations can provide good supports, smaller organisations are often, in my experience, more ‘person-centred.’ That is, the individual client is not ‘one of many,’ and therefore there’s an even greater vested interest for the provider organisations to make the support system successful. So many placements break down due to the revolving door where organisations do not want to accept individuals with perceived higher risk levels.
Most readers will be aware that, in the UK, our system of commissioning services is at best fragmented. In the BBC Disclosure documentary ‘Locked in the Hospital,’ (16th August 2022) I made a comment as an expert that I felt that the care system in our sector for people on the autism spectrum is ‘broken.’ Commissioning services that often have the person they support at the centre of day-to-day decision making will be more successful, but it does require a radical change in how we commission services for people who are trapped in hospitals. I do appreciate that the current economic climate and shortages of staff in care settings is a problem, but individualised commissioning allows us to remove many of the bureaucratic structures. Most importantly, my own philosophy is that having fewer staff supporting individuals who are better trained and better paid will inevitably always lead to a greater chance of success.
These organisations also tend to have leaders who demonstrate empathy and compassion for the people they support. So, how do we get people from a hospital setting to their own front door? In my experience, we need to create a system of support around an individual to enable them to be independent members of the community. In these specifications, the principle always starts with the person having their own front door. Quite often, individuals will struggle in group living environments, and simply having one’s own safe and homely space makes a massive difference. Longer term, people often require less support in terms of staffing, and some may eventually choose to live with other people.
The Medical Behavioural Model
I use this term to refer to the process whereby an individual hurts either themselves or others, and as a result mental health legislation is enacted. These situations are classed as a crisis, where an immediate place of safety is sought. Once admitted to such a place, the process becomes custodial in nature. The onus is often on the person to behave in a manner that satisfies a Multi-Disciplinary Team (MDT) and a Responsible Medical Officer (RMO)at they are ready to return to the community. MDTs are small groups of a variety of professionals who are often concerned with risk from a ‘defensive medicine perspective.’
This approach is often slow and cumbersome, and inadvertently creates a self-fulfilling prophecy: people become more distressed in their hospital environments the more they are told that there is no place for them elsewhere. It is not unusual in my experience for distressed individuals on the autism spectrum (and other conditions as well) to find that the most predictable, non-chaotic and safe place to be is to isolate themselves in their own bedrooms, or even seek out seclusion rooms. Admitting numbers of distressed people into ward environments where they often witness other detained people in similar states of distress is not therapeutic. This can lead to emotional contagion, whereby it is very hard to calm down when other people’s emotions and distress are at play. I should also point out that these environments are incredibly stressful for staff to work in, where they are often poorly paid, work long hours, and poorly trained in understanding autism and behaviours of concern.
Further distress can come in response to practices that may be in place to attempt to control and change an individual’s distressed behaviours. I have lost count of the number of well-intentioned care and behaviour support plans that are full of enormous numbers of do’s and don’ts. In many cases, staff end up inadvertently placing enormous pressure on the distressed individual to conform. Another unfortunate consequence is that lack of conformity may result in responses from staff such as restraint, seclusion, and other forms of restrictive practices, including pharmacological interventions, which should be called their true name - chemical restraint.
It is also my own experience that professionals and support staff struggle to have a shared understanding of why people behave in the way they do. This is not helped by the fact that often, within a medicalised model, people having multiple diagnoses and labels can reinforce the message that a person is ‘very complex’ and in need of ‘stabilisation.’ It is interesting that there are usually very limited psychological and other therapeutic responses available to people with these labels.
Cultures of coercion and control are more common in environments where medicalised models of care take place. When we cluster people together, some of whom can be quite high risk in terms of their behaviours of concern, we will understandably increase a culture of fear. Fear is a huge motivator for professionals in these circumstances. Staff and professionals can often become overwhelmed and so concerned for their personal safety that multiple staff are deemed necessary to constantly be in the person’s presence. I have worked with individuals in these types of environments who have attracted staffing numbers ranging from 1 to 1 staffing, up to even 8 to 1 staffing. In these circumstances, people forget that increasing the number of people watching the distressed person is likely to increase their distress and increase the likelihood of increasing behaviours of concern. We have to break this cycle to achieve change. In addition, the levels of restriction placed on individuals often increase in proportion to their perceived risk. This can lead to a culture of restriction where an individual loses much of their control over their day-to-day lives. Cultures of restriction can become the norm when staff fear outweighs genuine risk. In this vein, risk assessments can often be full of confirmation biases, as staff venture to validate their own fears around a person’s behaviour.
Helping people to move on and regain their former lives and routines requires empathy, compassion, and an understanding of risk minimisation, and I admit my own biases in advising crisis management approaches, such as the Low Arousal Approach. For many, a ‘new life’ with staffing support represents the next step. For many people, their support needs can often be less in reality that what is deemed appropriate by staff and professionals in residential placements. I stress that these places of safety are placements only, and should not be viewed as places for life. Whilst I have some sympathy for the fact that the ‘system’ is geared up for what can only be described as ‘risk minimisation,’ one of the keys to moving people out of these environments is to streamline the clinical risk pathway.
Understanding the Clinical Risk Pathway
'Who is going to be responsible for this person in the community?’ ‘Are communities going to be safe?’ ‘When is the person going to be ready to move to the community?’ These are some of the many questions that my colleagues and I have to answer on a daily basis. There are clinical risks to supporting people in different environments, but often moving a person to a more individualised setting can create profound reductions in risk. My colleagues and I at Studio 3 and Lives Through Friends aim to balance safety with positive and managed risk-taking. We do not buy into the model that a person has to be totally compliant in terms of their behaviour before they should move to an individualised support system.
Trying to transform risk-averse cultures often requires a clear roadmap for staff and individuals. Risk management involves providing a roadmap from hospital to the community, and is often undertaken by MDTs, usually involved in the individual’s secure care setting. My experience of MDTs is that they can be effective if professionals have an in-depth knowledge of the person being reviewed, and an understanding of community-based risks and supports. I would argue that MDTs need to be made up of professionals who are independent of the service provider. Of course, this does not mean completely bypassing these stakeholders, as their views are important.
I feel strongly a small risk group that meets a couple of times a month is the best approach. More traditional models where consensus meetings often involve large numbers of professionals need to be avoided. Similarly, with young people, while I accept that safeguarding vulnerable people is important, it is still possible to streamline the risk group meetings. It is also highly desirable that the person’s own voice is included in this process, which needs to be open and transparent, and include families where possible. This helps to avoid what I would describe as ‘headless chicken’ meetings where decisions become harder and harder to make. Everyone involved must remember that the ultimate goal of a risk group is to reduce its involvement over time, and to circumvent barriers to moving people, which can range from financial issues to being clear about dealing with day-to-day behavioural concerns.
My colleagues and I at Studio 3 and Lives Through Friends often refer to the process of assessing risk and creating a plan to move an individual into community-based care as a 360° review. This tends to focus on a ‘best guess’ pathway and will often include an estimate of staffing ratios in a future support system, training for staff, and some idea of a 'clinical/therapeutic' pathway. This will also include a plan for managing behaviours of concern in community settings, which will require people to understand that individuals will need to be given space and time to adjust to their new world, especially those who are decompressing from an environment where restraint and seclusion were the norm.
Have a Decompression Plan
Creating an approach that avoids coercive measures such as restraint and seclusion requires a process of ‘decompression’ similar to deep sea divers who emerge in stages from deep waters to the surface. Many of the individuals I have worked with have almost gotten to the stage where restraint and seclusion are part of their daily routine. Restraint decompression plans should follow the guiding principles below:
1) From Day 1 of moving to a new individualised support, staff are trained in crisis management alternatives and are told not to use physical restraint and seclusion
2) The first three months of these schemes often show ‘extinction bursts’ where the behaviour of concern can increase because a person is being managed in a different way
3) Withdrawing from the individual’s line of sight to allow them time to regulate has to be the primary intervention. This is done in a controlled and planned manner
4) Individuals in a process of restraint decompression may sometimes have increases in behaviours such as verbal aggression, minor self-harm, but in my experience, given time, these eventually decrease
5) Restraint decompression may have a ‘spiky’ profile and can take many months, and in a few examples, years, to remove these practices from people’s lives
It has been my experience that people cannot simply ‘learn as they go’ and assume that just by moving someone to a new, individualised house that these behaviours will simply disappear overnight. Planning for the worst and hoping for the best is what my colleagues and I recommend.
Reflective Approaches
Being data driven by my definition is not about recording behaviours and incident analyses that overly focuses on the person. The data needs to include a strong focus on the behaviour of staff/supporters. Too often people describe 'incidents' like they were spectators to an event rather than the truth that they are often active contributors. Reflective and honest examination of these events is essential, including our own role as supporters. We must try and move away from an obsession with ‘incident analysis’ that focuses far too much on the behaviour of the person we are supporting and not on the behaviour of frontline staff. This is really important in the first 3-6 months of new schemes where relationship building on all sides is essential to developing a safe environment for all people concerned.
Prevention and Community Support
This article has primarily focused on the process of getting people from hospitals back into their communities. It is no use just getting people out of hospitals; we must work to change the system by which people are detained for prolonged periods of time with no real therapeutic support. At a strategic level, we have to accept that the level of secure or controlled environments across the entire UK is far too high. I believe that if money was unlocked by decommissioning hospital beds it would be possible to envisage that the vast majority of these beds would not be required. It is my view that we can achieve this, but it requires a strategy that builds resilience and staff’s ability to deal with crises in the community. It also requires preventative measures to be in place to support individuals and their families within the community.
Transitional funding is often required from organisations such as NHS England and their respective bodies in Scotland, Wales and Northern Ireland. Sometimes it is possible to obtain funding (usually from the NHS) to provide supports under the auspices of ‘transforming care.’ I once managed a successful Community Challenging Behaviour Service in Birmingham in the 1990s. We did not just provide practical on-the-ground advice and support, we also included training for people in Low Arousal Approaches and ‘talking therapies.’ Despite managing to prevent many out of country placements, there was always a constant battle for funding for community supports and specialist teams of people to provide input to individualised services. Over the years, I have witnessed a decline in a number of these teams, which means that many families and staff groups do not get adequate specialist input and advice when they need it. I want to stress that such teams are not a straightforward solution and, in my opinion, they cannot operate using narrow behavioural frameworks. The primary goal is to support the person and their supporters in a manner that tries to avoid expensive hospital placements. I am in little doubt that more help directly to prevent crises is the only way to support people in their communities. If we want to transform care, we need to change how we think about behaviours of concern.
In this brief article, I have attempted to outline, primarily from a practitioner’s perspective, how we are going to meet the challenge of moving people who are detained in medicalised hospital settings to individualised support systems in the community. I have many examples of best practice around the entire UK. Often these examples have been developed by caring, compassionate, and assertive individuals to advocate from a human rights perspective. We have to actively campaign to stop filling up NHS and private sector beds with individuals who will then become locked in the system. In the recent BBC Disclosure documentary, ‘Locked in the Hospital,’ it was identified that over 40 individuals in Scotland were detained in a ‘delayed discharge’ category; that is, professionals agreed they were ready to be moved, but that there was no provider to meet this need. My colleagues and I at Studio 3 and Lives Through Friends are attempting to change the model of commissioning and will continue to share our learning in this series of articles.
Lives Through Friends works alongside open-minded statutory services and service providers to demonstrate how people with disabilities or mental health challenges can achieve their Good Life when you step outside narrow, service-dominated responses and focus instead on each individual’s strengths, aspirations and harness community assets. Find out more about their services on their website or follow them on Twitter.
Written by Professor Andrew McDonnell