“You can’t get more individual than Brain in Hand and the evidence information is invaluable.”
Jane Howson, CEO, Autism East Midlands
It is estimated that there are 45,000 people living with Autism in the East Midlands; a lifelong condition, it touches the lives of 180,000 people across the region. Founded by a group of parents wanting to make a difference, over 40 years Autism East Midlands has grown to be one of the largest providers in the region. It offers residential and day services, supported living, outreach services and specialist schooling for families across the region.
Constantly striving to ensure the vulnerable people it serves receive the best possible support, Autism East Midlands acted upon The Department of Health’s final report on Winterbourne View and the recommendations within Positive and Proactive care. It established a cross organisation group based on reducing restrictive practices with Positive Behaviour Support at its core. To achieve this it needed to further increase individualisation of care, increase evidence based practice and consistency of approach.
But supporting hundreds of complex individuals with 280 staff across 15 sites, within the same limited budget, this wasn’t going to be easy. It also knew that to create a significant difference, Positive Behaviour Support could not be an add-on to its operations, but an integral part of its whole service.
To support the ongoing development of modern services and enable staff to understand and see those they support differently, it rolled-out advanced technology, Brain in Hand, as part of organisation wide strategies to embed the changes needed.
Brain in Hand software helps those who experience high levels of anxiety, may not be able to cope with a change to routine and can be dependent on others to help make every day decisions. It enables individuals to access their own personalised support from their phone and support staff to see insights including success of interventions from a secure website. A red button feature helps users to request urgent support from staff, making them feel supported and intervention to be rapidly provided when it is needed most.
From across the 15 sites, seventy individuals were set-up with Brain in Hand and staff were trained. People who needed extra help to achieve their independence goals were chosen, working with their key worker to enter into the system activities, problems and solutions for them to access when needed.
Those with very complex needs were also included in the programme; but here it would be the support workers themselves who access the system, enabling them to quickly access agreed solutions to best support each person.
Red button requests for help fed into the central office at each site, enabling local staff to quickly respond. And a number of team members were also selected to be ‘Brain in Hand Champions’, there to give extra support and guidance to others and share best practice across the organisation. These champions were valued by team members, support users and management alike.
Brain in Hand has been an integral part in supporting the move to a values based Positive Behaviour Support model. In particular, understanding the function of behaviour has enabled support strategies to be more effective and more responsive. Brain in Hand is easily updated ensuring that the most recent strategies are available at all times.
Across the service, changes have been seen in the nature of incidents and the strategies used to support individuals. . The length and severity of interventions have decreased and requirement for restraint has reduced. This has enabled staff to focus more time on proactive and positive development activities.
The steps towards independence has been marked. Some individuals have started using public transport for the first time, we have supported those attending work and seen increased communication with staff.
The goal to increase staff consistency has been achieved. Using the knowledge and skills from intensive training within positive behaviour support, staff are now able to refer to Brain in Hand and accurately mirror support plans, reducing behavioural issues amongst those users who get anxious when their support changes. They are also able to quickly pinpoint the interventions that are proving the most or least effective. This has led to an increase in confidence amongst staff, especially those working alone or new to position. A recent CQC report highlighted this change, reporting that a member of staff it spoke with said: “Any challenging behaviour is just the person communicating. 99% of the time, there is a reason, it’s our job to find out what this is and support it.”
The user could then access this rich set of information from their phone and their support worker could view usage from a secure website. The support worker also took time to explain how the system works, so that people knew where to access solutions.
A number of people from across the organisation’s services were selected to be set-up with Brain In Hand. Each person had dedicated sessions with their support worker to map out what problems in life they face and discuss what solutions work best for them. This, along with their diary and recipes for hard to remember tasks, were entered into their Brain In Hand account.
Being able to access the anxiety monitor, usage log and red button requests, Autism East Midlands has discovered a marked change in the evidence it is able to collect, ensuring people receive precisely the support they need. It can report to commissioners on the interventions that took place to prevent an incident in greater detail, not just about the incident itself. Essential in an organisation looking to drive down incidents.
The sharing of evidence or insights is also strengthening the wrap-around care that it provides. Brain in Hand enables staff and family members to improve transitions, sharing information about support provided and trends in anxiety. This insight helps staff to have a better picture and tailor care plans before the individual arrives using the information they have available. It increases transparency between family and service too, increasing trust and collaborative working for the benefit of the service user.
Talking of the decision to adopt Brain in Hand, Jane Howson, Chief Executive Officer, said:
“Positive Behaviour Support is all about individualisation and insights. You can’t get more individual than Brain in Hand and the evidence information is invaluable. It is essential for a modern person-centred service.
“The real reduction in anxiety and incidents takes us on our journey to an overall reduction in restrictive practice, not just physical restraint, but access to parts of the building or supervision.”
A short BBC video of the Brain in Hand programme at Autism East Midlands can be found at: