We are delighted to invite you to our annual conference, held in the beautiful surroundings of the National Gallery of Scotland in the heart of Scotland’s historic capital city. The Scottish Art Collection and Princes Street Gardens are less than a stone’s throw away from the lecture theatre for fresh air and a change of scene in our breaks.

Day 1 is a day of collaboration and learning together for multidisciplinary clinicians, third sector and other agencies committed to improving the mental health of children and young people with severe and profound learning disability.

Included in your conference ticket is the evening meal and ceilidh on Monday 12 May at the Walpole Hall and Song School at St Mary’s Episcopal Cathedral in Edinburgh’s West End. This is for CAIDPN members and conference speakers and includes exclusive viewing of the Phoebe Anna Traquair murals.

Day 2 is our CAIDPN psychiatry day where we focus in depth on psychiatric aspects of sleep and movement disorders in children and young people with learning disability. We also hold our AGM, consider training and recruitment into ID CAMHS Psychiatry and hear about the work of the network’s research group.

The Gallery and evening entertainment are both in central Edinburgh and easily accessible by tram from Edinburgh Waverly and Haymarket railway stations and Edinburgh Airport. This year’s conference is non-residential, giving the opportunity for you to choose and book from a wide range of hotels and apartments. We suggest you stay in the Haymarket area where our evening meal and ceilidh is, or near to a tram stop if booking elsewhere.

About the sessions

Mental health and behaviours that challenge in children and young people with severe/profound ID – the evidence base – Dr Jane Waite & Dr Ashley Lieu

Our joint presentation will summarise the current evidence base for the prevalence, risk factors, measurement/assessment and management of mental disorders and behaviours that challenge when presenting in children and young people with more significant intellectual disabilities (ID). We will highlight the barriers and facilitators for research in this area, as well as the challenges and opportunities for conducting research in the delivery of services within this area. We then present new research on the horizon and propose that advancement will require close collaboration between young people with ID and their families, clinicians, other professionals (eg. education and social care), researchers, commissioners and research funders.

Learning objectives:

• To understand the current evidence base for supporting mental health and behaviours that challenge in children and young people with severe/profound ID.
• To understand future research directions.
• To understand factors impacting the advancement of such research and what everyone can practically do about it

Working with families of children with complex needs in their early days in the Royal Hospital for Children and Young People – Elaine Davis

The first 28 days of a new baby’s life is a challenging time for all parents. Add into that mix a child born with complex medical needs or life limiting condition, the strain on parents is great. Whether expected, or a result of an unexpected early term delivery, parents face trying to bond with their child whilst contending with medical jargon and equipment, sometimes conflicting advice from professionals as well as their own grief, anguish and fear for the future.

This is where independent advocacy comes into its own, supporting parents through the unknown. The work of Kindred helps parents and benefits the whole family unit in what is often their darkest days.

Learning objectives:

• To understand some common challenges faced by families in the neonatal period
• To understand the role of Independent Advocacy for families of children with complex needs
• To understand the impact on parent’s mental health when a child is born with complex needs

Bereavement and loss – supporting bereaved children and young people with profound and multiple disabilities and their families and carers – Pat Graham and Danielle Shull

This session will introduce the history of PAMIS’s groundbreaking research around bereavement and loss for people with PMLD and their family carers. To support a deeper understanding of the subject and raise the profile of furthering conversations around grief and what it means for people with a profound learning disability and their families. We will use a variety of presentation methods to invite curiosity, compassion as you explore the grief experience alongside us in a whole new way.

Opening history from Maureen Phillip, researcher and storyteller who played a key part in identifying the need for further work around bereavement whilst researching emotional wellbeing for family carers of children with PMLD. Lauren and Gran’s Story, presented by family carer and Chair of PAMIS Board, Pat Graham. Following that, Danielle Shull, PAMIS Bereavement and Loss trainer, will lead us on a whirlwind look at our re-developed bereavement and loss course, followed by time in conversation between Danielle and Pat Graham. We’ll close with a Q&A led by PAMIS CEO, Jenny Miller.

Learning objectives:

• To raise the profile of PAMIS’s bereavement and loss research, and why it is important.
• To better understand how someone with PMLD may experience bereavement and loss.
• To contextualise the PAMIS bereavement and loss course within the context of PMLD and the family caring experience.
• To gain a deeper understanding of the unique challenges of grief for people with PMLD and their family carers.

Overview of sleep and sleep breathing problems in children – Dr Don Urquhart

The talk will aim to cover available tests (and tricks of the trade) for obtaining sleep studies; as well as case-based illustration of the management of sleep and sleep-breathing problems in children including those with complex needs.

Learning objectives:

• To understand the range of tests available to diagnose children’s sleep problems.
• To explore management of common sleep problems in children with intellectual disability.
• To discuss strategies for investigating and managing sleep problems in this patient cohort.

Professor Helen Minnis is Professor of Child and Adolescent Psychiatry at the University of Glasgow. She has had a longstanding clinical and research focus on the psychiatric problems of abused and neglected children. She is running randomised controlled trials of interventions for children who have experienced early adversity. She also conducts epidemiological research and is currently focusing on the interplay between abuse and neglect and neurodevelopment across the life-course. She has collaborations with colleagues at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, the Universities of Aalborg and Aarhus, Denmark and with the Gillberg Neuropsychiatry Centre, Gothenburg, Sweden.

Dr. Don Urquhart is a Consultant and Honorary Reader in Paediatric Respiratory and Sleep Medicine at the Royal Hospital for Children and Young People and University of Edinburgh. Don is a clinician and researcher in whose main interests are exercise and Cystic Fibrosis, and sleep medicine. Don undertook paediatric respiratory training in London, and has an MD from UCL. He undertook a post-CCT fellowship in paediatric sleep medicine in Brisbane. Don has been an author on more than 70 peer reviewed publications and has led several investigator-initiated studies in the fields of exercise in CF and also in sleep medicine. Don has been PI on a variety of drug trials, and has contributed to the writing of international exercise testing guidelines.

Pat Graham is the Chair of PAMIS.  She is a family carer for her daughter, Lauren who  has a profound and multiple learning disability.  Pat has been involved with PAMIS for more than 30 years, and she and her family have used PAMIS’s services throughout that time.  Since retiring she has put her free time to good use by being actively involved in many PAMIS projects. She is delighted that working with PAMIS provides her with the opportunity to give something back to an organisation that has provided so much support, education and fun to her family.

Danielle Shull currently co-leads on the bereavement and loss project at PAMIS, which has just been redeveloped for its 10-year anniversary. Utilising a background in counselling and her Master’s in Social Work, Danielle leads with a strong focus on narrative, creative and therapeutic support which empowers people to explore and understand the emotions around grief in their lives at multiple stages. In partnership with her colleagues, Danielle delivers training and practical skill development for family carers, professionals and individuals with PMLD in navigating their lived experiences of bereavement and loss.

Elaine Davis is the new CEO of Kindred Advocacy, a charity that has been dedicated to supporting the families of children with complex needs for approaching 35 years. Elaine is a qualified teacher, mediator and independent sexual violence advocate and has supported children and young people and their families healing from the trauma of sexual abuse, and the associated mental health challenges, across England and Scotland for many years. 

Ashley Liew is Vice-Chair and Research Lead for CAIDPN. He was previously Consultant in the Birmingham CAMHS-LD team for a decade, and is currently Consultant Paediatric Neuropsychiatrist at the Evelina London Children’s Hospital, as well as National & Specialist CAMHS at South London and Maudsley NHS Foundation Trust. His clinical and academic interests are in the mental health of children and young people with neurodevelopmental conditions (particularly intellectual disabilities) and neurological conditions (particularly epilepsy, encephalitis and brain injury). Ashley has honorary academic appointments at the Universities of Birmingham and Warwick; and sits on 2 Faculty Executive Committees at the Royal College of Psychiatrists.