By Sam Oakes, MND Family Support Worker

Motor Neurone Disease (MND) isn’t a diagnosis one person has, its something a whole family carries. My role, alongside the MND Team, is to guide, support, and help people diagnosed with MND and their families balance joy and living in the moment with the inevitable fears and worries that come with an MND diagnosis.

I think it’s really important that people living with MND aren’t defined by their illness. We take time to learn who they are, what they enjoy, what has shaped their life to date. From their careers, hobbies, and the people who matter most, so their identity continues to shine through.

I’m grateful to the Motor Neurone Disease Association for funding my role, and to Leeds Hospitals Charity for providing additional funding for resources to help patients and families. This funding allows me to offer small but meaningful touches, like refreshments at clinic. A simple coffee or hot chocolate with a favourite biscuit can make a big difference.

Leeds Hospitals Charity also funds resources for memory-making activities, enabling patients and families to create keepsakes and memory boxes together. These moments go beyond traditional care, offering comfort and connection.

The Rob Burrow Centre for MND has transformed the support we can provide. Gone are the rows of chairs in a clinical waiting room, now we have a central space with comfy seating and a kitchen where families can come together, make drinks, relax or play games. We are now able to offer support and develop other services at the centre in a non-clinical, sensitive and accessible environment where everything is to hand.

The quiet room offers privacy for reflection or sensitive conversations, and doubles as a space for memory-making. Our family room is already popular with the children that have visited, giving them a place to play, craft, or watch TV while spending quality time together.

We do the very best for our patients, but having this specialist centre gives us flexibility to grow and expand our services. Together, we’re helping people living with MND and their families create lasting memories and find moments of joy throughout their journey.