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Megan Walters
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passed away aged 42 years, wife and mother to 2 daughters
Diagnosed with Huntington’s Disease (HD) in 2008
Incurable degenerative genetic disease usually encompassing a movement disorder,
cognitive impairment and mental health complications.
Its heredity, long term and complex nature often creates severe stress on the sufferer, their
carer(s) and family.
Megan was looked after at home by her husband with the help of carers until the last twelve
months of her life.
Mental health issues, untreated for 18 months leading up to her sectioning in August 2014,
forced her to leave home at this time.
Endured 7 months in a mental health unit where her wider health needs were neglected.
General health declined rapidly. Discharge planning was ineffective.
Moved to the Royal Hospital for Neuro-Disability in Feb 2015 but health continued to decline
and Meg passed away from a post operative infection following a PEG insertion in June
2015.
Ben Walters_Nov 2015
Dieticians
Dieticians &
& speech
speech
&
& language
language
Anxiety and
obsession
Greater risk
of infections
Sleep
deprivation
Swallowing
disorder
Body image;
too fat?
Dental care;
pain
A long time
to build Trust
General
Medicine
Risk of falls
and scrapes
Difficulty
communicating
Fear and
sense of loss
Confusion,
what is real?
Neurology
Eating
disorder
Pneumonia
HUNTINGTON’S
DISEASE
Cannot
regulate
emotion
Weight loss,
PEG feed ?
Care and
and nursing;
nursing;
Care
understandHD
HD
understand
Ben Walters_Nov 2015
Occupational therapy
and Physio
Chorea &
movement
Uncontrolled
anger
Psychosis and
delusions
Choking
Pain, fatigue,
frustration
I can hear; I
know what's
going on!
Cannot wait;
impulsive
Incontinence;
embarrassed
Constipation,
vomiting &
impaction
Mental
Health
If I could only say three things about HD…
1. The interaction of symptoms is unique for each sufferer
2. Listen to the carer and accept advice from HD expert
3. Only a Multi-disciplinary team approach is effective;
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Clinical specialists, combined with quality care in the right setting,
bound together by experience in the disease,
improves & prolongs quality of life,
and ultimately saves resources
Ben Walters_Nov 2015
Neurologist Neurologist
Current model;
New model;
the sufferer has
to
CARE
CENTERED
SEARCH
FOR ALL
AROUND
THE
THE
SUPPORT
PERSON NOT
AND CARE THEY
THE SERVICE
NEED and
NOTHING IS
COORDINATED
General
Generalmedicine
Mental
Health
medicine
I have I have
Huntington's
Huntington's
Disease Disease
Dieticians &
Speech &
Language
Care/nursing
Care/Nursing
Occupational
Occupational
therapy & therapy &
Physio
physio
Ben Walters_Nov 2015
the sufferer has
the support and
care they need
through a
COORDINATED
Dietician &
Speech &
MUTLI
Language
DISCIPLINARY
TEAM
Mental
Health