Medicine and me: Children - the hidden victims of Huntington's Disease

Date

Monday 10 September 2018

Half Day

Venue Royal Society of Medicine
1 Wimpole Street
LONDON
W1G 0AE
Organised by

Medicine and Me, HDdennomore Initiative

Accreditation

CPD - Applied for

Event Image

about this event

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. 

Hear from professionals

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.

Hear from family members

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.

early bird price 

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

* Following registration you will be contacted appropriately by email with your booking confirmation, feedback survey and attendance certificate. For full details of the RSM privacy policy, click here.

*Programme is subject to change

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agenda

12.30 pm

Registration, tea and coffee

12.55pm

Welcome Address

Sir Michael Rawlins, Past President, Royal Society of Medicine

Session 1

Sir Michael Rawlins

1.00 pm

What is Huntington’s disease?

Nancy Wexler, Higgins Professor of Neuropsychology, Columbia University

1.15 pm

Patient perspective: living with a parent with Huntington's Disease

Matt Ellison, Huntington's Disease family member and Founder, Huntington's Disease Youth Organization

1.30 pm

Carer perspective

Cath Stanley, Chief Executive, Huntington's Disease Association

1.45 pm

Panel discussion

Session 2

Professor Sir Simon Wessely, President, Royal Society of Medicine

2.00 pm

Patient perspective

Mr Mark Newman

2.15 pm

Stress, anxiety and depression management

Professor Hugh Rickards, Consultant in Neuropsychiatry, University of Birmingham

2.45 pm

The fallout of juvenile Huntington's Disease

Ms Helen Santini, Specialist Advisor, Juvenile Huntington's Disease

3.00 pm

Panel discussion

3.15 pm

Tea and coffee break

Session 3

Miss Kaji Sritharan, Associate Dean, Royal Society of Medicine

3.45 pm

Patient/researcher perspective

Ms Lauren Byrne, Huntington's Disease family member and Huntington's Disease Researcher, University College London

4.00 pm

Future/research

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

4.20 pm

HDdennomore

Mr Charles Sabine, Television Journalist

4.40 pm

Panel discussion

All speakers

5.20 pm

Closing remarks

Professor Sir Simon Wessely

5.30 pm

Close of meeting

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  • Patients, carers and family members, as well as medical students/trainees can register for free
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rates

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organiser's details

For information on this event, contact Charlotte MannTel: 020 7290 3919 Email: medandme@rsm.ac.uk arrow