Dr Ian Male, Consultant Community Paediatrician and Dr Will Farr, Senior Research Fellow at Sussex Community NHS Foundation

Pirates in an adventure with children’s autism research

Date: 30 November 2017

Dr Ian Male, Consultant Community Paediatrician and Dr Will Farr, Senior Research Fellow at Sussex Community NHS Foundation have worked together for several years. They share an interest in children’s research and in particular how technology can help treatment and diagnosis of childhood diseases and conditions.

Ian says: “Our first proper meeting was in a local pub over a cup of coffee (or in my case juice). On that day Will quickly discovered he needed a tape recorder to keep up with my flight of research ideas.”

Ian is based at Nightingale Child Development Centre at Haywards Heath. He has led a programme of research for over 10 years on improving the clinical effectiveness of services and treatments for children with neuro-disability and their families in the community.

“Conducting research is important to me as I want to find solutions to problems I encounter in my clinics and the NHS is a practical place in which to carry out research.”

Will Farr did not start his career in the NHS. His undergraduate degree was at University of Sussex and University of California, Berkeley. He then became a Primary school teacher and acted as a special educational needs coordinator (SENCO). Will worked in schools for twelve years. During that time he also worked in Tottori Prefecture in Japan. Will also, completed an MA in Education, and finished the National Professional Qualification for Headship. Will’s young relative had autism and Will wanted to find out more about the condition, so he completed a PhD in Psychology, finishing in 2011.

However when Ian and Will were given a grant to carry out a study using  Nintendo Wi-Fits -   Wii Fit and cerebral palsy feasibility study.  Will left full time teaching and went to work in the NHS and now spreads his time between NHS and schools.

Will says: “We wanted to see if a widely available home console system (the Nintendo Wii Fit) can be used to provide regular, tailored physiotherapy, or virtual reality therapy, to children with cerebral palsy.”

Ian says: “It is important to get more NHS clinicians active in research. The more we find out, the better treatment and services we can give to our patients. Obviously, I believe children are the most important and I would like to have more children involved in research.  Clinical research involving children is important for the benefit of all children and they should be given the opportunity to benefit from the results of successful research. It leads to innovations in healthcare that can improve their health and quality of life. Research with children can also help our understanding of some adult diseases that are thought to have their origins in childhood. Therefore, the findings of research involving children can also be relevant for adults.”

Now Ian and Will are working together on two new autism focused studies. Traditional assessment for Autistic Spectrum Disorder (ASD)  is a lengthy process.   In the UK a multidisciplinary assessment process is used. This  requires  information  being  gathered  from home  and  school, as  well  as  observation  and  testing  in  clinic.

With children’s increased use of new technology there is an opportunity to update diagnostic tools. New iPad based programmes could be beneficial to both clinician and patient. Ian, Will and students at Brighton and Sussex Medical School developed an App based on traditional clinical tests for autism as an aid to diagnosis. The diagnostic criteria for ASD include looking at social impairment, communication impairment and repetitive behaviours. The App aims to explore these three areas of difficulty through the medium of a pirate adventure story game. They won the 2017 BMA Helen H Lawson grant for research into technologies to assist patient care to study the validity of the app.  

The story within the game involves pirates travelling to an island, looking for treasure. The children then interpret the facial expressions of the pirates throughout the game. The characters are based on Lego mini figures as these have faces with easy to recognise emotions and facial expressions.

The research has potential to improve patient care, improve  information  at  initial  screening which  will  reduce  stress  and  anxiety  for  children and families and improve the experience and engagement of children.

Early use, in a pilot study in three local Child Development Clinics suggested that the tool can help  inform decision  making  around  the  need  for  further  diagnostic  assessment  when  used  alongside parental  history  and  information  from  other  settings  such  as  school. In addition  to  information  obtained  from the  questions  within  the  tool,  clinicians  commented that  they  often  obtained  additional  information  around  the  child’s  interaction  with themselves  and with the  tool.

Ian says: “This  experience,  together  with  consultation  with  our  wider team,  including  an  academic  expert  in  psychological  testing,  in  particular  around  Theory  of Mind, and  local parents, has allowed us to modify the storylines for this new study.” (Theory of Mind refers to the notion that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view).

The study team have further explored   principles   of software design   for   children   on   the   autistic spectrum and also considered design features likely to improve engagement with the App. This new study - Establishing Accuracy Parameters of a Child Social Communication Assessment Tool - will further asses the App. The App will be tested with children in mainstream school, and with those already diagnosed with autistic spectrum disorder in child development centres.

Ian and Will are also working on a second multicentre study which aims to find out the amount of time it takes to complete an assessment in the NHS and the resulting cost. The research team is being supported by a health economist, Professor Heather Gage, University of Surrey and a statistician, Dr Stephen Bremner. The study has been funded through the Royal College of Paediatrics and Child Health (RCPCH) and British Academy of Childhood Disability (BACD) Paul Polani Research Award.

Waiting times between initial assessment and diagnostic clinics are often over six months, and in some cases as long as 1-2 years. Initial data from a first phase study suggests a typical assessment takes 13 hours of professional time to complete and costs around £800 for a child to undergo a full assessment.

Will says:  “We hope this will help create the case for improved resourcing of our services and improve the quality and timeliness of service we are able to offer and that families will benefit through improvement in quality and timeliness of diagnostic assessment

“For each child we will collect data from their case notes on which professionals were involved in their assessments with the child development team and how long they took. This data will be recorded anonymously, and shared with the main study centre to allow us to look at what is happening in centres across the UK.”

“The plan is to follow the journeys of individual children through each pathway, rather than rely on what we think we do. This will also allow us to cost professionals more accurately rather than making assumptions and to include costs for additional activities such as report writing.”

Information will be taken from case notes retrospectively to map the journey of each child, including those who did not proceed to diagnostic assessment, using the study proforma. This allows recording of which professionals were involved at each stage, time taken, date of each point in the pathway and any additional information gathered.  The proforma was developed to reflect pathways obtained from a number of Child Development Centres nationally, and has been piloted in five centres. 25 Child Development Centres from across the UK will be asked to collect data on 20 consecutive children referred with possible ASD.

Ian says: “Our long term dream is to set up a paediatric Neuro-disability research centre to operate across Kent, Surrey and Sussex, linking in education research with health and social care.  We would have a focus on use of virtual reality and related technologies in children with Neuro-disability.  There is already a lot going on already to base a centre around, for example work at the Chailey Heritage Centre in complex physical Neuro-disability, The Children’s Trust with acquired brain injury (ABI) studies, and our own studies, which could be very exciting. We have also linked with Brighton and Sussex Medical School to look at potential academic posts in this field.”

There is a huge amount of potential for researchers across Kent, Surrey and Sussex with an interest in innovation and making the most out of popular technology to create a clinical research silicon valley. The more diverse areas that can be investigated, the more potential there is to improve treatment and diagnosis for all of our patients in the region.


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    Pioneering children’s research utilising virtual reality is advancing within Sussex.
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