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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 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; • • • • 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