OUR ADVISORY PANEL

Here at the Eden Dora Trust for Children with Encephalitis, not only do we have absolutely incredible teams of Patrons and Trustees – we also have a growing team of amazing Professional Advisors!

Santosh Mordekar

CONSULTANT PAEDIATRIC NEUROLOGIST

CLINICAL LEAD FOR CHILD ITB, MOVEMENT & SPASTICITY SERVICE, SOUTH YORKSHIRE

Hi, I’m Santosh, a Consultant Paediatric Neurologist at Sheffield Children’s Hospital. I am clinical lead for Intrathecal Baclofen Service (ITB), movement disorder and spasticity service for children in the South Yorkshire, North Derbyshire and North Lincolnshire region. I have established multidisciplinary ITB clinics, specialist paediatric movement disorder clinics and Tourette syndrome clinics in our region. I was the Deanery Adviser in Paediatric Neurology for Trent region and sat on the Council of the British Paediatric Neurology Association from 2006-2012. I was a registered stakeholder for the NICE guidelines for spasticity in children published in 2012.

I am the lead for the Neuroscience Module for PGDip Child health, University of Leeds since last 4 years. And I am on the faculty of BPNA Expert to Expert Movement Disorders Course since last 5 years. I am also on the Medical expert panel of advisers for the patient support group Tourette Action UK, and am on the Medical expert panel of advisers for the Ataxia UK and run a Specialist Paediatric Ataxia clinic in the UK. One of my main areas of practice and research is brain injury and its consequences including Acquired Brain Injury (infections, trauma, stroke, tumour), neurorehabilitation and management of spasticity and movement disorders post brain injury. I work in multidisciplinary teams and with other specialists and therapists. Some children with Acquired Brain Injury escape a motor disability but have significant cognitive difficulties which are a “hidden disability” as they are very under–recognised. It is important to recognise these and support the child and family with this with adequate support within the health and educational setting.

Dr. Heather Elphick

CONSULTANT IN PAEDIATRIC RESPIRATORY AND SLEEP MEDICINE

Heather has been consultant in Sheffield since 2008, having trained at Alder Hey and Melbourne Children’s Hospitals. She leads the sleep service at Sheffield Children’s Hospital, managing a comprehensive range of sleep disorders. Heather holds an Honorary Chair with the University of Sheffield, in recognition of her collaborative work in research and innovation in the field of technological solutions for children with long-term conditions, and is the NIHR Children and Young People’s Medtech sleep and respiratory theme lead, leading nationally funded research and innovation projects. Heather recently led the Health Foundation “Wake Up to Sleep” project promoting awareness of the impacts of sleep deprivation, has spoken at The Sleep Charity’s manifesto launch at the Houses of Parliament, and has appeared regularly in the media in support of the importance of children’s sleep – she is incredibly passionate about improving the problems with sleep that are faced by children and their families.

Janine Reynolds

PAEDIATRIC NURSE

I am Janine Reynolds and I have been a paediatric nurse (RCN paeds) since 2005. I have worked in the field of sleep medicine as an experienced Nurse Specialist in Sleep since 2008 and in 2009 the opportunity arose to combine my business degree and my nursing skills, along with my colleagues at Sheffield Children’s NHS Foundation Trust, I set up a new nurse-led Sleep Service, which included carrying out diagnostic sleep studies. I run paediatric sleep clinics to provide specialist sleep advice to educate and support parents / carers and children / young people. Providing a high quality evidenced based care of children/young adults attending the sleep disorders service. Working as part of a multidisciplinary consultant led team and providing leadership to the growing behavioural advisory sleep service. Regularly undertaking clinical audits, research and supporting other staff in the Paediatric Sleep Disorders Service.

Dita Aswani

PAEDIATRIC CONSULTANT

I am a general paediatric consultant at Derbyshire Children’s Hospital, and have been in paediatrics since I qualified in 1996. I look after children with any paediatric condition: either when they come in with an acute illness, or for long-term follow up. I have a particular passion for helping children with chronic conditions, as they increase vulnerability, and their difficulties can often be hidden from everyone, but still have a silent but profound impact. Encephalitis can have far-reaching implications on families, friendships, schooling, and the achievement of long-term potential. Support for families, education for all involved in a child’s life journey, and raising public awareness are key – and are things that The Eden Dora Trust for Children with Encephalitis are crucial in providing.

Nathan Hughes

PROFESSORIAL RESEARCH FELLOW OF SOCIOLOGICAL STUDIES

Nathan Hughes is a Professorial Fellow at the University of Sheffield. His twenty years of research have focused on the needs of vulnerable children and their families: with a particular emphasis on education and criminal justice. He is perhaps best known for his work examining the criminalisation of young people experiencing neurodevelopmental difficulties, including those related to Acquired Brain Injury (ABI) – which emphasises the great prevalence of disability among young people involved in the youth justice system, and the processes of educational disengagement and restricted access to justice that lead them there in the first place. Nathan is committed to ensuring his research has an impact on policy and practice, through engagement with Parliamentary committees and groups, and the training and support of professionals and practitioners. He is also a visiting professor at the Centre for Postgraduate Nursing Studies of the University of Otago, New Zealand, and honorary researcher at the Centre for Adolescent Health at the Murdoch Children’s Research Centre, Melbourne.

Jessica Nurney

PAEDIATRIC OCCUPATIONAL THERAPIST

I am Jessica Nurney, a Paediatric Occupational Therapist currently specialising in Sensory Processing Disorder, with previous experience of working with children and families affected by Encephalitis. I graduated with a Bachelor’s of Science in Occupational Therapy, and have training in Sensory Integration, amongst extensive knowledge of other physical and mental health conditions including acquired brain injury (ABI). I have previously worked as a Community Paediatric Occupational Therapist in Sheffield. Within this role I worked with families of children and young people across Sheffield with physical disabilities and conditions that impact upon their level of day to day independence. At the moment, I work within a private service providing assessment and intervention supporting children and young people with mental health, sensory processing difficulties and independence skills. The role of an Occupational Therapist when working with anyone who has an acquired brain injury is quite simple; to aid their independence. Occupational therapy is incredibly important during immediate and ongoing recovery for someone with an ABI. An Occupational Therapist can provide solutions and strategies for fatigue, planning and sequencing skills for independence in school/work/home environments and can help children and families work to build new skill sets, and gain crucial independence skills and the child’s executive functioning. An occupational therapist can also influence memory strategies, sensory processing difficulties and associated mental health difficulties.

Dr. Emily Talbot

CONSULTANT CLINICAL PSYCHOLOGIST

As a Consultant Clinical Psychologist in the Paediatric Neuropsychology Service of Nottingham University Hospitals NHS Trust, my clinical work involves working with children, adolescents and young adults with Acquired Brain Injury and neurological, neuro-oncological and neurosurgical conditions. My specific clinical and research interests are in Encephalitis and Epilepsy in childhood, as well as paediatric Acquired Brain Injury. I’ve carried out research looking at the health-related quality of life of children post-Encephalitis, and collaborated on lots of projects/publications aiming to support an understanding of the longer-term outcomes for children and adolescents after Encephalitis.

Beth Wicks

SENIOR CLINICAL NEUROPSYCHOLOGIST

Beth Wicks is an Education Consultant, specialising in acquired brain injury (ABI). She has worked with young people with acquired brain injury, their families and schools for approximately 30 years. She acted in an advisory and training capacity to education providers and completed expert witness reports for the court. She has retired from those aspects of her work but continues to work on specific projects. She has been involved in research regarding school difficulties following acquired brain injuries, spoken regularly at national and international conferences and has written or co-authored many publications, including the textbooks: Educating Children with Acquired Brain Injuries (second edition in press) and Effective Learning After Acquired Brain Injury: a practical guide to support adults with neurological conditions. She has co-authored material to support young people with ABI and their families for the Child Brain Injury Trust. She has been a consultant to a number of innovative projects and programmes for young people with acquired brain injury and regularly contributed teaching sessions for post graduate courses in paediatric neurodisability and neuropsychology. In addition to being a founding board member of the International Paediatric Brain Injury Society, she is a member of the Criminal Justice and Acquired Brain Injury Interest Group; has previously run family and teenage support groups and has acted as a board member, trustee or advisor for a number of UK ABI charities.

Anna Adlam, PhD

ASSOCIATE PROFESSOR  &  CLINICAL PSYCHOLOGIST

Anna Adlam is an Associate Professor at the University of Exeter, a Clinical Psychologist (DClinPsy), and an academic Neuropsychologist (PhD). Anna’s research focuses on developing and evaluating interventions for children and young people who have had a brain injury. Anna gained her Ph.D. investigating developmental amnesia, at UCL,  then worked as a post-doctoral researcher at the MRC-Cognition and Brain Sciences Unit. Anna then completed her doctoral training in Clinical Psychology at the University of East Anglia, worked as a clinical psychologist for the Cambridge Centre of Paediatric Neuropsychological Rehabilitation; joined the University of Exeter as a Senior Lecturer in 2012 and was promoted to Associate Professor in 2019. Anna completed a British Academy Mid-Career Fellowship (2015-17), which focused on problem-solving interventions for children with a brain injury. Anna is the Co-Director of Postgraduate Research for Psychology and the Director of Research for CEDAR at the University of Exeter; and is the Research Lead for the Child and Adolescent Neuropsychology group, across the UK, Europe, USA, Canada and New Zealand. Anna is delighted to join the Eden Dora Trust Advisory Panel, and is looking forward to working closely with colleagues and families to support the needs of children and young people who have had Encephalitis.

Dr. Natalie Hampson

EDUCATION CONSULTANT

Dr Hampson has over 10 years’ experience of working with people with neurological conditions in acute, outpatient and community settings. Previously, she spent 3 years as the sole Neuropsychologist for inpatient children’s neurosciences at Sheffield Children’s Hospital, providing highly specialist assessments and interventions to children and their families experiencing a wide range of acquired and developmental neurological conditions.

Laura Pinches

PAEDIATRIC NURSE

My name is Laura Pinches and I work in the intensive care unit at the Evelina Children’s Hospital in London where I care for children aged 0-18 with a range of medical conditions and illnesses. I have been a qualified paediatric nurse for the last four years, during this time I have cared for many children who have been critically unwell with Encephalitis and also children undergoing extensive neurological rehabilitation for brain injuries and other neurological conditions. On a personal level, my cousin Liz (seen in ‘other children’s stories’) was desperately ill with Encephalitis in 2011 and has experienced an extremely complex and difficult rehabilitation. I have seen 1st hand through her experiences, the struggles of living with an Acquired Brain Injury and how life changing Encephalitis can be.

Katy James

SPEECH & LANGUAGE THERAPIST

CHAIR OF THE ACQUIRED BRAIN INJURY CLINICAL EXCELLENCE NETWORK

I qualified as a Speech and Language Therapist (SLT) in 1998 and have worked with adults and children with acquired brain injuries throughout my working life. This has been in the NHS, in independent practice and in the voluntary sector across acute, inpatient neurorehabilitation and community settings in the UK and in New Zealand. I am Chair of ABICEN, the Acquired Brain Injury Clinical Excellence Network for SLTs and was previously a member of the National Acquired Brain Injury in Learning and Education Syndicate (N-ABLES).

I have been involved in the set up and development of national multidisciplinary community services for children with ABI and their families and am passionate about raising awareness of the ‘hidden disabilities’ that can result from brain injury, including encephalitis, and which impact on the child, their family, friends, and the whole system.

It is a privilege to join the Eden Dora Trust advisory panel and contribute to the fantastic work and support the charity provides to young people and their families who have experienced encephalitis.