Monday 10 September 2018
Royal Society of Medicine
1 Wimpole Street
Medicine and Me, HDdennomore Initiative
CPD - Applied for
This afternoon meeting will focus on the psychological trauma of children in Huntington's families. You'll hear highlights from both professionals and family members.
Hugh Rickards, a Clinical Neuropsychiatrist:
“The child will often take on caring responsibilities for the parent, which can result in stress and problems in their own development. They may suffer bullying and victimisation through having a parent who appears ill (or intoxicated) and often develop a huge sense of loyalty to their HD parent and will often jeopardise their own futures in the cause of that loyalty.
Children may have to experience loss or separation in relation to the HD parent, either through marital breakdown, hospital admission, child protection or death.
The biggest problems are anxiety and depression. However, there are more complex problems with attachment that may arise too. Academic progress might be affected and that affects all sorts of other areas including self-esteem and economic potential.”
HD family members will be speaking talk of hidden drug dependency and other addictions, and constant lack of attention;
“My dad’s oldest sister also had HD. She was the oldest of the siblings and the head of the house. She was very involved in looking after her own mother when she had HD. Due to the lack of awareness and understanding of the early behavioural and cognitive changes that can occur with HD, her children were neglected. My aunt would spend all her time up with my granny to the point where the children weren’t fed. It also has come out from her daughter more recently that she was quite emotionally abusive towards her. My cousin definitely acts like someone who has been psychologically abused as a child.”
Despite anecdotal evidence that these problems are absolutely typical - happening in more HD families than not - no data or statistics can be referred to; the underlying problem is so hidden that there has never been any relevant research.
Patients, their carers and family members attend for free. Medical students and trainee doctors/trainee healthcare professionals can also attend Medicine and me meetings for free.
RSM member rates: £15 - £45
Non member rates: £25 - £75
*Programme is subject to change
Registration, tea and coffee
Sir Michael Rawlins, Past President, Royal Society of Medicine
Sir Michael Rawlins
What is Huntington’s disease?
Nancy Wexler, Higgins Professor of Neuropsychology, Columbia University
Patient perspective: living with a parent with Huntington's Disease
Matt Ellison, Huntington's Disease family member and Founder, Huntington's Disease Youth Organization
Cath Stanley, Chief Executive, Huntington's Disease Association
Professor Sir Simon Wessely, President, Royal Society of Medicine
Mr Mark Newman
Stress, anxiety and depression management
Professor Hugh Rickards, Consultant in Neuropsychiatry, University of Birmingham
The fallout of juvenile Huntington's Disease
Ms Helen Santini, Specialist Advisor, Juvenile Huntington's Disease
Tea and coffee break
Miss Kaji Sritharan, Associate Dean, Royal Society of Medicine
Ms Lauren Byrne, Huntington's Disease family member and Huntington's Disease Researcher, University College London
Dr Edward Wild, Consultant Neurologist, National Hospital for Neurology and Neurosurgery, London and Professor Sarah Tabrizi, Honorary Consultant Neurologist, National Hospital for Neurology and Neurosurgery, London
Mr Charles Sabine, Television Journalist
Professor Sir Simon Wessely
Close of meeting
View rates for all membership types:View rates
For information on this event, contact Charlotte MannTel: 020 7290 3919 Email: firstname.lastname@example.org