A Parent's Perspective on Occupational Therapy in Treating and Managing Duchenne Muscular Dystrophy

A Parent’s Perspective on Occupational Therapy in Treating/Managing Duchenne Muscular Dystrophy (DMD)

                                                                                   

This is a summary from my experience as a mum of a son with Duchenne muscular dystrophy, of what families/people living with DMD are dealing with and what we need from our Occupational Therapists.

What we are dealing with

A relatively rare, complex, severe, progressive, life shortening, and currently incurable condition

·         Diagnosis can be difficult to get and late

·         The emotional impact of diagnosis – families are traumatised

·         A plateau stage (phoney war) followed by rapid deterioration – parents can be unprepared and in denial

·         Time is of the essence

·         A lack of integrated multi-disciplinary specialist care and advice in many areas

·         A raft of different issues which all need to be addressed:  physical, learning, social interaction, behavioural, psychological.

·         Families working with many professionals – currently fourteen for our son

·         Families facing demands of time and loss of income in co-ordinating and managing care

·         Families getting their heads around house adaptations – which are complicated and expensive

·         Getting our heads around current research and whether/how our children/young people may be eligible for clinical trials

What we need from OTs

Understanding of the condition:

·         Knowing the diagnostic symptoms of DMD

·         Knowing the clinical progression of DMD

At-a-glance information for parents, given at the stage when they need it:

·         An A4 sheet summarising equipment and house adaptation needs and where we can get help and more info

·         An easy-to-follow sheet of daily hand strengthening exercises

OTs quick and easy to reach:

·         A phone number or email address where we can reach the OT quickly

·         Quick response times from OTs

·         OTs proactive in getting equipment for boys in good time for when they need it

·         A publicly funded and publicly accountable one-stop OT service

·         Both adult and paediatric OT service

OTs training and working with educators:

·         OTs planning occupational therapy in school together with the SENCo, class teacher, and TA (and parents).