Professor Anne O’Hare Consultant Paediatrician Affected by learning difficulties? Help us set the research priorities that matter. Learning Difficulties Priority Setting Partnership Professor Anne O’Hare Consultant Paediatrician Project delivered by: In partnership with:

What will I cover – Learning Difficulties Priority Setting Partnership (PSP) Research background What is the project about? How does it work? What have we found out so far? What are other similar PSPs about children and young people? Next steps

Research Background Research centre for learning difficulties at The University of Edinburgh Identifying and resolving Research priorities that matter to those most affected

Who was James Lind? A Scottish naval surgeon Pioneer of clinical trials 12 sailors with scurvy divided into six pairs Pairs given oranges and lemons made remarkable recovery A plaque in Teviot Place, University of Edinburgh James Lind "The Hippocrates of Naval Medicine"

Priority Setting Partnerships 41 completed partnerships About 31 current partnerships Some partnerships that involve children and young people: Asthma Mental health in children and young people Autism Neurodevelopmental disorders (Canada) Childhood disability Oral and dental health Eating disorders (Netherlands) Pre-term birth Eczema Teenage and young adult cancer Learning difficulties (Scotland) Stillbirth

Learning Difficulties PSP Collaboration between the University of Edinburgh and its partners in NHS, education services, the third sector and Scottish charity The Salvesen Mindroom Centre (formerly Mindroom). Pursuing the strategic objectives of identifying and resolving learning difficulties  understanding how best to support children and young people with learning difficulties and their families. > May have no formal diagnosis or many causes. Contributers had a wide range of underlying diagnoses and many had complex combinations of difficulties.

Aim of the Learning Difficulties PSP What are the unanswered questions about learning difficulties from the families of children and young people and healthcare, educational and social work professionals. Children and young people, families, and the professionals prioritise the unanswered questions about learning difficulties. Video of James sharing his experience of living with ADHD and how the project can help individuals with learning difficulties.

The Priority Setting Process Set up steering group Invite partners Gather uncertainties Check uncertainties Prioritise uncertainties Promote priorities to researchers and funders

The Steering Group Comprises of parents, clinicians, families of children and young people, healthcare professionals, educational professionals & charity representatives Resources and expertise Regular meetings/telecons Publicising the project Overseeing the process Responsible for dissemination JLA chair – a neutral facilitator

Survey 30 September 2017

Child-friendly version Survey Child-friendly version 30 September 2017

Survey closes 30 September 2017 Please pick up a leaflet and paper questionnaire at the registration desk. Survey closes 30 September 2017

Survey Responses As at 8th August 2017

Survey Responses As at 8th August 2017

Survey Responses As at 8th August 2017

Survey Responses Parents’ responses on the types of learning difficulties their children have As at 8th August 2017

Comparison with other PSPs JLA Partnerships Survey respondents Submitted uncertainties Learning difficulties 340 759 Childhood disability 369 809 Pre-term birth 386 593 Autism (including adults) 1213 3331 As at 8th August 2017

The Top 10 Priorities Pre-term Birth Top 10 1. Which interventions are most effective to predict or prevent preterm birth? 2. How can infection in preterm babies be better prevented? 3. Which interventions are most effective to prevent necrotising enterocolitis in premature babies? 4. What is the best treatment for lung damage in premature babies? 5. What should be included in packages of care to support parents and families / carers when a premature baby is discharged from hospital? 6. What is the optimum milk feeding strategy and guidance (including quantity and speed of feeding and use of donor and formula milk) for the best long-term outcomes of premature babies? 7. What is the best way to judge whether a premature baby is feeling pain (for example, by their face, behaviours or brain activities)? 8. Which treatments are most effective to prevent early onset pre-eclampsia? 9. What emotional and practical support improves attachment and bonding, and does the provision of such support improve outcomes for premature babies and their families? 10. Which treatments are most effective for preterm premature rupture of membranes?

The Top 10 Priorities Autism Top 10 1. Which interventions improve mental health or reduce mental health problems in autistic people? How should mental health interventions be adapted for the needs of autistic people? 2. Which interventions are effective in the development of communication/language skills in autism? 3. What are the most effective ways to support/provide social care for autistic adults? 4. Which interventions reduce anxiety in autistic people? 5. Which environments/supports are most appropriate in terms of achieving the best education/ life/ social skills outcomes in autistic people? 6. How can parents and family members be supported/educated to care for and better understand an autistic relative? 7. How can autism diagnostic criteria be made more relevant for the adult population? And how do we ensure that autistic adults are appropriately diagnosed? 8. How can we encourage employers to apply person-centred interventions & support to help autistic people maximise their potential and performance in the workplace? 9. How can sensory processing in autism be better understood? 10. How should service delivery for autistic people be improved and adapted in order to meet their needs?

The Top 10 Priorities Childhood Disability Top 1 to 5 1. Does the timing and intensity of therapies (e.g. physical, occupational and speech and language therapy, ‘early intervention’, providing information etc.) alter the effectiveness of therapies for infants and young children with neurodisability, including those without specific diagnosis? What is the appropriate age of onset / strategies / dosage / direction of therapy interventions?  2. To improve communication for children and young people with neurodisability: (a) what is the best way to select the most appropriate communication strategies? And (b) how to encourage staff/carers to use these strategies to enable communication? 3. Are child-centred strategies to improve children’s (i.e. peers) attitudes towards disability (e.g. buddy or Circle of Friends etc) effective to improve inclusion and participation within educational, social and community settings?  4. Does appropriate provision of wheelchairs to enable independent mobility for very young children improve their self-efficacy?  5. Are counselling/psychological strategies (e.g. talking therapies) effective to promote the mental health of children and young people with neurodisability? 

The Top 10 Priorities Childhood Disability Top 6 to 10 6. What is the (long term) comparative safety and effectiveness of medical and surgical spasticity management techniques (Botulinum neurotoxin A (BoNT-A), Selective Dorsal Rhizotomy (SDR), Intrathecal Baclofen (ITB), orally administered medicines) in children and young people with neurodisability?  7. Does a structured training programme, medicines and/or surgery speed up the achievement of continence (either/or faecal or urinary) for children and young people with neurodisability? 8. What strategies are effective to improve engagement in physical activity (to improve fitness, reduce obesity etc.) for children and young people with neurodisability? 9. Which school characteristics (e.g. policies, attitudes of staff etc.) are most effective to promote inclusion of children and young people with neurodisability in education and after-school clubs? 10. What is the long term safety, effectiveness and sustainability of behavioural strategies and/or drugs (e.g. melatonin) to manage sleep disturbance in children and young people with neurodisability (outcomes include time to onset, duration, and reducing impact on family)? 

Does this make a difference? What happened after the Childhood Disability PSP has identified its Top 25 priorities Priority 1: Timing and intensity of therapies for infants and young children with neurodisability Priority 10: Ways to manage sleep disturbance in children and young people with neurodisability Funding provided by the NIHR Health Technology Assessment (HTA) and Health Services and Delivery Research (HS&DR) programmes Priority 2: Selection of appropriate communication aids Funded by HS&DR programme to Dr Janice Murray (chief investigator), Manchestor Metropolitan University, £686,112, started in January 2016, research in progress Priority 6: Comparative safety and effectiveness of medical and surgical spasticity management techniques Subject of The National Institute for Health and Care Excellence (NICE) guidance which will lead to specific related research recommendations Priority 13: Improving behaviour in children with learning disability Funded by the HS&DR programme to Professor Angela Hassiotis (chief investigator), University College London, £1,405,284, started in June 2017, research in progress Priority 15: Postural management programmes Funded by HS&DR programme to Dr Jill Cadwgan (chief investigator), University of Newcastle upon Tyne, £253,395, started in October 2015, research in progress Priority 14: Sensory integration therapy for children with autism spectrum disorder Funded by the HS&DR programme to Dr Rachel McNamara (chief investigator), Cardiff University, £1,193,553, started in January 2017, research in progress Priority 20: Improving eating ability in children with neurodisability Funded by the HS&DR programme to Dr Jeremy Parr (chief investigator), University of Newcastle upon Tyne, £307,793, waiting to start

Next Steps Workshop Survey 1 Survey 2 Tell us 3 questions you’d like researchers to investigate Survey 2 Tell us what questions, from all replies, are most important to you Workshop Prioritise the final 20-30 questions All replies are sorted

For more information… If you’d like to hear more about the next stages and progress of this project, please email your name and email address to LD_research@ed.ac.uk @LD_Research