In the past year Prior’s Court have participated in a research project, commissioned by NHS England and led by The Challenging Behaviour Foundation and the Tizard Centre at the University of Kent, to investigate how the NHS might embed ways to ensure that the voices of individuals with autism and learning difficulties are heard.

In doing so, the aim of the NHS is to reduce health inequalities, reduce inpatient admission and develop a new commissioning framework for key workers who offer intensive support for individuals with autism.

Nine children, young people and adults with profound, severe or multiple learning disabilities and/or complex autism took part in the project. One of the children was a young person at Prior’s Court. Alongside each participant a Communication Partner was nominated. For the Prior’s Court young person, this was Louise Kinton, our Therapy Lead.  

Louise met with the research team on three occasions and twice with a parent of the young person.

During the meetings the group began to put together a series of behaviour indicators for when the student was: a) relaxed and happy; b) showing early signs of agitation/anxiety and c) experiencing high levels of anxiety/distress. These indicators were broken down into categories - body movements and behaviours; facial expressions and colouring; gestures; verbalisations / sounds; and other signs and indicators.

By drawing up one of these charts for an individual with autism, a Communication Partner is more skilled, for example, at supporting professionals during a medical appointment to ensure that they have a more accurate understanding of the needs of the individual with autism and for the individual to have their voice heard and to make choices. Moreover, family members in the project, reported that having a Communication Partner present made medical appointments a more effective and  positive experience.   

The research team has started to publish guidance on the subject for NHS England which includes the presence of a Communication Partner.

Finally, as a result of the success of the pilot project, Prior’s Court will now look to begin to roll out the initiative for more of our young people.