1. Megan Walters 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
Ben Walters_Nov 2015

2. Ben Walters_Nov 2015

3. If I could only say three things about HD…
The interaction of symptoms is unique for each sufferer
Listen to the carer and accept advice from HD expert
Only a Multi-disciplinary team approach is effective;
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

4. CARE CENTERED AROUND THE PERSON NOT THE SERVICE
I have Huntington's Disease
Neurologist
Mental Health
Dieticians & Speech & Language
Occupational therapy & physio
Care/nursing
General medicine
I have Huntington's Disease
Neurologist
Mental Health
Dietician & Speech & Language
Occupational therapy & Physio
Care/Nursing
General medicine
Current model;
the sufferer has to
SEARCH FOR ALL THE SUPPORT AND CARE THEY NEED and NOTHING IS COORDINATED
New model;
the sufferer has the support and care they need through a COORDINATED MUTLI DISCIPLINARY TEAM
CARE CENTERED AROUND THE PERSON NOT THE SERVICE
Ben Walters_Nov 2015