An occupational therapist’s role in MND care

Supporting dignity and independence

As we mark Global MND Awareness Day on 21 June, this blog shares John’s story and the vital role occupational therapy plays in supporting people living with Motor Neurone Disease. It’s a reflection on the power of personalised care and how dignity and choice can be protected through even the most difficult moments. 

When someone is diagnosed with Motor Neurone Disease (MND), their world changes overnight.

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 They’re suddenly surrounded by a team of health and social care professionals, each with a specific role to play. As an occupational therapist at Woking & Sam Beare Hospice, my role is to help people like John maintain their independence and quality of life, even as the disease progresses. 

I first met John and his wife shortly after his diagnosis. From the beginning, it was clear that John wanted to keep his home as a sanctuary — a private, peaceful space where he could be with his family and enjoy the simple pleasure of watching birds in the garden. My job has been to support that vision, helping him plan ahead while always keeping him in control of the decisions that affect his life. 

Working with people with MND means being prepared for rapid changes. I draw on my experience to anticipate what might be needed — equipment, adaptations, or support — but I always tailor my approach to the individual. Every journey with MND is different. My aim is to be one step ahead of the illness, while ensuring the person remains at the centre of every decision. 

John and I have had some emotional and sensitive conversations about the future. He’s always wanted to understand his options so he can make informed choices, balancing the need for support with his desire to keep life at home feeling as normal as possible. 

Motor Neurone Disease has changed every aspect of my life faster than I ever imagined — from

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 breathing and eating to the most basic bodily functions. 

Heather and the hospice occupational therapy team have been a guiding force, helping me navigate each new challenge. Her support has truly been life-changing, from ensuring I can stay in my bed as long as possible to providing solutions that maintain my dignity and independence.

She’s helped me with things I never thought I’d need help with—eating, staying comfortable, managing hygiene. Thanks to her, I can still get out into the garden and enjoy precious time with my family. Through every stage, she’s been there—always listening, always finding what works best for me.