Is segregation really the solution?

Working within an inpatient setting for adult learning disability services can be rewarding and demanding. I have worked for our service, as a healthcare assistant and now assistant psychologist for over 3 years and I am proud to have been involved in the many changes that have been implemented. Our client group has changed dramatically in recent times, with many more complex cases coming into the service, and with that, comes challenges.

These complexities resulted in high levels of restrictions in our service, including long-term segregation for our patients, as we navigated our way towards developing good therapeutic relationships and person-centred care plans.

Long term segregation is defined by the Mental Health Act Code of Practice as 'a situation where, in order to reduce a sustained risk of harm posed by the patient to others, which is a constant feature of their presentation, a multi-disciplinary review and a representative from the responsible commissioning authority determines that a patient should not be allowed to mix freely with other patients on the ward or unit on a long-term basis.'

Little over a year ago, I would have believed that segregation could be beneficial for a patient, after all, it reduces risk of physically challenging behaviour towards others, so why wouldn't it be necessary at times? However, thanks to my experiences of the past 12 months, I now feel very differently…

The problem with segregation

Research suggests that long-term segregation can be damaging for an individual, causing iatrogenic harm. While it initially reduces risk, it can lead to social and mental health issues, feelings of isolation, distress, powerlessness, and shame. Individuals reported that higher levels of restrictions made it feel more difficult to recover while in hospital and they could feel scared, angry and upset. Research also suggests that discharge from hospital for individuals in long-term segregation can be difficult to achieve due to the complexity of bespoke care packages. A factor we often experience in our service. But when segregation feels like the only option, how do you prevent this harm?

Finding hope

The National HOPE(S) programme is a human rights-based approach to working with individuals in segregation. It is comprised of a checklist, to identify factors interfering with ending long-term segregation, a framework to help teams understand factors associated with long-term segregation and an implementation plan. I was invited to attend a two-day training session for the administration of the Barriers to Change Checklist (BCC). This training qualified members of our team to administer the checklist and develop action plans to reduce long-term segregation. Initially, I wasn't entirely sure if this would be successful. I immediately thought about specific individuals who were enjoying a more solitary life, whose quality of life was good, and were awaiting discharge. I also thought about individuals who had previously struggled to live alongside others, finding it difficult as well as risky for others due to challenging behaviours. Now, on reflection, I can see that I feared that the goal of reduction may start to happen too quickly, as opposed to taking small steps or the 'quick wins' as they are called in the checklist. But the aim was to reduce long-term segregation and open the world up slowly for the people we care for. It was to help find that balance between safety and growth.

When the Barriers to Change Checklist and HOPE(S) programme was introduced to our service, the service was experiencing increased levels of scrutiny from the Care Quality Commission. Feeling scrutinised can be a difficult experience and there can be a tendency to resist change during this time. Which change is the right change? What will really help to improve services? It can feel particularly difficult to 'get the ball rolling' at the same time as coping with the daily pressures that come in acute settings. Joining the HOPE(S) programme however, acted as an excellent driving force to make changes. It offered fresh eyes, bringing optimism at a time of scrutiny.

The whole multidisciplinary team got behind the programme and found a way to creatively gather the voice of the individuals where we couldn't directly. The checklist includes a self-report section to gather information about a patient's experience of segregation. Due to difficulties with processing information, commonly experienced in learning disability services, it was important to make this accessible. With involvement from speech and language therapy, we adapted the self-report questionnaire, ensuring we could gather everyone's view. We also considered therapeutic relationships between staff and individuals, and we were driven by their hopes and wishes outside of segregation, and moved at a pace that was suitable for them. The daunting thought of ending long-term segregation was forgotten, as was the focus of even reducing it. Our focus was on improving quality of life and with that, we naturally saw a reduction and an end of long-term segregation for 100% of the individuals in our service. With an end to segregation for individuals who once posed a risk to others, we may have expected a rise in other restrictive practices such as physical interventions. However, as we slowly improved patients' quality of life and began to step out of long-term segregation using the checklist, we also saw a reduction in all restrictive practices. This remains to this day.

'Hopes' for the future

My hope is that we continue to progress as a service, reducing all restrictions and I think the HOPE(S) model will continue to play a role. By understanding the impact of long-term segregation, any journeys for individuals being admitted into our services begin in a less restrictive environment. When we used long-term segregation in our service, the reduction in challenges we experienced was simply down to the opportunity of risk towards others being removed. However, looking back now, was long-term segregation the answer? There is no doubt that reducing conflict between individuals is extremely important and risk should always be assessed; however, long-term segregation prevents opportunity for positive and meaningful engagement with others. Applying Dr Dan Seigal's concept of an individual's window of tolerance by reducing demands and triggers, supports an individual to remain within their optimal level of emotional arousal. However, by reducing this significantly through long-term segregation, there is then no room for growth or development of this window of tolerance. Entwining this with complexities that come with trauma, learning disabilities or autism diagnoses to name a few, once long-term segregation is in place, it can also prove difficult to re-integrate. I think it's still important to hold onto the notion that segregation may provide immediate safety and reduce risk, but we need to find the balance between safety for the person, physically and emotionally, while promoting growth and development. While it can be challenging to find that balance, long-term segregation is arguably never the answer.

I also hope by reflecting on the changes made to the service I work in, including the challenges, it encourages others to be open minded about the possibility of change within their practices. Whether this insight resonates or not, I encourage everyone to be curious about the world outside long-term segregation for individuals they support, no matter how big of a goal it may seem. Sometimes the smallest changes have a big impact, and it may be a catalyst to even bigger changes. Take time as a team to question a simple 'quick win' which may offer the individual more choice, control, and a step towards reducing long-term segregation.