Diagnosed with Huntington’s Disease (HD) in 2008

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Presentation transcript:

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 2015. Ben Walters_Nov 2015

Ben Walters_Nov 2015

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

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