Support and Care at Rob Burrow Centre for MND

Providing holistic support for families affected by Motor Neurone Disease

Motor Neurone Disease (MND) is a condition that impacts not only the individual diagnosed but also their entire family. At the Rob Burrow Centre for MND, a dedicated team works to provide comprehensive support to those living with the disease and their loved ones. Sam Oakes, an MND Family Support Worker, plays a key role in this process, helping families navigate the challenges that come with an MND diagnosis.

Supporting identity and quality of life

Sam Oakes emphasises the importance of recognising the person beyond their diagnosis. The support team takes time to understand each individual’s life story, interests, and relationships. This personalised approach aims to ensure that patients’ identities continue to shine through despite the progression of the illness. By focusing on what matters most to patients—such as their careers, hobbies, and family connections—the centre seeks to balance moments of joy with the realities of living with MND.

Funding and resources

The role of Family Support Worker is funded by the Motor Neurone Disease Association, with additional resources provided by Leeds Hospitals Charity. This combined funding enables the centre to offer practical support and small comforts during clinic visits. For example, refreshments such as coffee, hot chocolate, and biscuits are made available to patients and their families, helping to create a welcoming and supportive environment.

Services offered at the centre

• Emotional and practical support for patients and families
• Guidance on living with MND and managing symptoms
• Opportunities to create meaningful memories and maintain quality of life
• Access to resources and information tailored to individual needs

The work at the Rob Burrow Centre for MND highlights the importance of a holistic approach to care, recognising the emotional and social dimensions of living with a serious illness. By supporting both patients and their families, the centre aims to improve wellbeing and provide comfort throughout the course of the disease.

Source: Leeds Hospitals Charity