- The History and Development of Smith-Magenis Syndrome
- Genetics for beginners
- Understanding and managing behaviours
- Augmentive Communication
- DLA, SDS & Other Benefits
- Mental Capacity Act (Surgery Sessions)
- Achieving Objectives
- Wills and Trusts (Irwin Mitchell Solicitors)
- A Siblings’ Experience of SMS
- The Smith-Magenis Syndrome (SMS) Foundation UK Annual General Meeting
- Sleep Research Update
- Medical Management (with Ann C.M. Smith, M.A., D.Sc. (Hon))
- Diet and Weight Management
- What are Circadian Rhythms and Why does it matter?
- Positive Behaviour Support
- Transition from Residential School to Adult Services
- CAMHS Role (Services and Systems – Part 1) and (Approaches to Medication – Part 2)
- Physiotherapy (Adults)
CAMHS Role (Services and Systems – Part 1) and (Approaches to Medication – Part 2) by Duncan Manders
Dr Duncan Manders is a Consultant Child and Adolescent Psychiatrist and Honorary Clinical Senior Lecturer, University of Edinburgh, based at the Royal Hospital for Sick Children in Edinburgh. He currently works in a service for children up to the age of 18 with neurodisability including ADHD and other developmental disorders such as Autism and Learning Disability as well as providing psychiatric consultation to the department of paediatric neuroscience at the RHSC. His specialist clinical interest is the role of psychopharmacology in children with neurodevelopmental disorders. Previous Consultant responsibilities in Edinburgh have included Paediatric Liaison Psychiatrist to the Royal Hospital for Sick Children and consultant for the adolescent in patient unit. From 2008 to 2016 he was Clinical Director for NHS Lothian CAMHS.
Transition from Residential School to Adult Services by Serena Tomlinson
The “Transition to adult social care from residential educational settings” project is a new research project being undertaken at the Tizard Centre, University of Kent. The project focuses on young people’s transition from residential schools and colleges in order to understand how this process is managed, and its outcomes. This session will give an overview of the project, present initial findings from phase 1 and seek views about the methodology for interviews with family carers during phase 2.
Positive Behaviour Support by Serena Tomlinson
Positive Behavioural Support (PBS) is a multicomponent framework for supporting people who display behaviours that could be described as challenging (such as self injury, aggression, or property destruction). It is recognised as being an ethical and effective way to provide support and it has been recommended in a number of policy and professional guidance documents within the UK. This session will give an overview of the PBS framework, how it is delivered, and the use of PBS in the UK.
What are circadian rhythms and why does it matter? by Dr. Christopher-James Harvey
An over of the sleep and circadian system, it’s role in optimal functioning and how we can manipulate it.
I completed an honours degree in psychology at the University of Glasgow in 2008. Later that year I began studying for my Ph.D. under the supervision of Professor Colin Espie. I was awarded a Ph.D. in psychological medicine in 2012. My research focused on defining phenotypical vulnerability to insomnia, investigating the interaction between personality, coping style and physiological response to stress (cortisol, fMRI, heart-rate).
I have recently developed The Oxford Online Programme in Sleep Medicine. This is an online, post-graduate course aimed at health-care professionals who wish to further their understanding of sleep, sleep disorders and treatments.
I am also involved in the ‘Teensleep‘ project. Funded by the Wellcome Trust and Education Endowment Fund. The project currently focuses on the effect of an education intervention about sleep, on sleep and then academic attainment and health outcomes in adolescents.
The History and Development of Smith-Magenis Syndrome
Ann C.M. Smith, M.A., D.Sc. (Hon)
Ann Smith, the “Smith” in Smith-Magenis syndrome, is a certified genetic counsellor and internationally recognized leader in the field of medical genetics and genetic counselling. Ann works as a senior genetic counsellor under contract to the Office of the Clinical Director, National Human Genome Research Institute at the National Institutes of Health (NIH), Bethesda, MD, USA. As Adjunct Principal Investigator of the natural history study of Smith-Magenis syndrome (protocol 01-HG-0109), she heads the multidisciplinary team of basic science and clinical researchers who work collaboratively on SMS at the NIH. Ann currently serves as Chair Emeritus of the Professional Advisory Board of PRISMS (Parents and Researchers Interested in SMS).
Achieving Objectives by Nigel Over
In this session Nigel will explore some techniques to promote collaborative working that supports the person with SMS to prosper. The approaches taken have ensured that his son Matthew had a positive school experience and wsa prepared for transition into adult services away from home. Putting the person at the centre and building the team and understanding around them results in everyone working together creating successful outcomes.
Drawing from his professional management roles, Nigel has applied a range of techniques to ensure that his son Matthew succeeded in his education and transitioned smoothly into adult residential care and learning disabled workshops.
A Siblings’ Experience of Growing up with SMS by Susan Over
Susan Over is 13. Susan will be sharing her experiences of growing up with her older SMS brother, Matthew (19). In a candid talk, Susan will provide an insight into the challenges and positives she has gone through, touching on the support she has found along the way.
Susan has become passionate around raising awareness and supporting those with disabilities and illness. She has taken part in a sponsored walk and organised a Christmas craft stall in aid of the Smith-Magenis Syndrome Foundation UK. She has championed a campaign in support of the Carers of West Lothian, Young Carers and Siblings project. Susan also donated her hair and raised funds for the Little Princess Trust.
Diet and Weight Management by Chris Eaton
My name is Chris Eaton I live in Birmingham. My youngest Daughter (Samantha) has Prader-Willi- Syndrome. She was diagnosed with PWS at the age of 5 years, before this age she was labelled with “global delay”. We used many services like portage, speech/language therapy and physiotherapy. She attended Special School till she was 18 then she went to Derwen Residential College for 3 years.
She now lives in a small residential Care home in Stoke-on-Trent. I’m not a size 12 myself so I’m not an expert on diet and weight management. I have however learnt a lot over the last 30 years about the importance of diet control for someone with PWS and by sharing some of my experience’s with you today I hope it helps you in the future.
Update on Sleep Research by Jayne Trickett
Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Jayne Trickett has recently submitted her PhD in sleep in children with neurodevelopmental disorders, to include Smith-Magenis syndrome. Jayne’s PhD project was undertaken at the Cerebra Centre for Neurodevelopmental Disorders under the supervision of Professor Chris Oliver, Dr Caroline Richards and Dr Mary Heald.
Prior to her PhD, Jayne completed a MRes in Clinical Psychology at the University of Birmingham and studied for her undergraduate degree in Psychology at the University of Bath. Jayne currently works as a research associate at the University of Leicester department of Health Sciences.
Understanding Behaviours by Prof. Chris Oliver
Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Chris Oliver is Professor of Neurodevelopmental Disorders at the University of Birmingham and director of the Cerebra Centre for Neurodevelopmental Disorders. He trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. He is currently researching early intervention, behaviour disorders in people with severe intellectual disability and autism spectrum disorder, behavioural phenotypes in genetic syndromes and neuropsychological and behavioural assessment for people with severe intellectual disability. He has published over 100 peer reviewed articles in scientific journals, is Editor in Chief for the Journal of Intellectual Disability Research and serves on a number of scientific advisory committees for syndrome support groups. Sadly, he supports Luton Town Football Club.
Mental Capacity Act (Surgery Sessions) by Rhianon Gale
Rhianon has been involved in the lives of people with learning disabilities and their families for nearly 20 years. She has worked in health and social care services and the charity sector in various roles including support worker, social worker and Manager of a national service supporting family carers. Rhianon has been an active member of the National Valuing Families Forum for several years and is well networked with family carer led groups across England. She is now an Independent Social Worker, Trainer and Consultant on the rights of and support for families that include a person with a learning disability.
Rhianon lives with ‘invisible’ disabilities herself and supports family members with psychological and physical disabilities; giving her first hand understanding of the obstacles that people with disabilities and family carers can face.
Rhianon believes it is really important that people and families have the information and skills they need to understand, navigate and work with health and social care systems – so they can get the right support to live a good life. She has a keen interest in law and policy relating to family carers and people with learning disabilities and enjoys explaining this more clearly and connecting words written on paper to real lives.
As an Independent Social Worker, Trainer and Consultant, Rhianon runs workshops for family carers on topics including ‘Using the law to get the right support’, ‘Decision Making and the Mental Capacity Act’, ‘(Moving from DLA to) Personal Independence Payment’. She also works with support providers and delivers training on additional topics such as the Care Act, Welfare Benefits and supporting people with a ‘Whole Family Approach’.
Augmentive Communication by Chris Sherlocks
Chris qualified as a Speech and Language Therapist in 1983 in Leeds. For most of her working life she has lived and worked in Birmingham,
including in schools, child development centres, Birmingham City University and Birmingham Children’s Hospital.
Chris has worked in Augmentative and Alternative Communication (AAC) since 1999, at Access to Communication and Technology (ACT), a regional specialist assessment service. Chris has been a respite carer for a person with learning disabilities for 21 years and is also a licensed bat worker.
DLA, SDS & Other Benefits by Kathy Jagger
My name is Kathy Jagger. I moved to Scotland 27 years ago with my partner and live in Glasgow.
I have four boys, the eldest is 25 and has a severe and complex learning disability. He has three younger siblings, one of whom is currently under assessment for ASD. As a parent to a child with additional needs I felt very isolated. The advent of social media has allowed me to meet others in a similar position and share information and provide support. I now admin several online support groups with a combined membership of more than 60,000, providing support and information. I have built a wealth of knowledge around the benefit system especially those that relate to disabilities and caring.
This knowledge has allowed me to find employment as a Financial Inclusion and Benefit Advice Worker in Northwest Women’s Centre. I am also about to move into 3rd year of a Community Development Degree.
Although busy I am a member of Britannia Panopticon Players and am in the chorus for monthly music hall performances – something I find equally scary and exciting.
Irwin Mitchell Solicitors
Wills and Trusts Presentation by Lucy Bloom
About Irwin Mitchell
Irwin Mitchell are a full service law firm, covering Personal Legal Services and Business Legal Services. Their Personal Legal Services team includes their Court of Protection department, Public Law and Human Rights department and personal injury departments. Irwin Mitchell is the largest ‘full service’ law firm in the UK providing a wide range of private client and business legal services to private individuals, businesses, charities, institutions and organisations and generate 8,000 wills every year. (more about Irwin Mitchell)
Dr Alison Male
Dr Alison Male is a Consultant in Clinical Genetics. She has worked at Great Ormond Street Hospital for seven years.
Dr Male works in both general genetics and cancer genetics. She runs a regular perinatal genetics clinic.
Dr Male is on the Professional Advisory Board of the Smith-Magenis Syndrome Foundation Qualifications and training.
Qualifications and training
- FRCP, MBBS, BSc
- Dr Male received her MBBS from the University of London (St George’s Hospital Medical School)
- After completing basic medical training in paediatrics she undertook her training in clinical genetics at Guy’s Hospital, London
This page will update with more information about presenters and workshops as and when they are confirmed.
Physiotherapy (Adults) by Tamas Prios
I’m Tamás Piros. I qualified as a physiotherapist in 2006 and started my career working various geriatric services. I have worked with adults with a learning disability for the last 4 years and find it challenging and gratifying. The main part of my job is to maintain the physical health of those under my care through a holistic approach.