People living with motor neurone disease in Sussex are receiving increased support and better access to clinical trials following an expansion of local services.
The Sussex MND Network has moved to University Hospitals Sussex, bringing it closer to the clinical teams that support patients every day. The trust said the change is improving joined-up care, strengthening community services and boosting training for health and social care professionals.
As part of the expansion, the trust has introduced its first dedicated MND-specific roles. Dan, an MND research nurse funded by the MND Association, helps patients understand research opportunities, navigate clinical trials and receive ongoing support throughout their participation. Rachel, an MND network coordinator, provides guidance, practical help and continuity of care, drawing on nearly a decade of experience supporting people with MND.
Sheila, 72, from Brighton, was diagnosed with MND in 2022. She said: “Being diagnosed with MND was a frightening experience for me and my family. From day one Rachel was truly invaluable as a friendly, calming, compassionate and reassuring voice. Since then, she has continued to be pivotal in the provision of these services, which has been incredibly welcome.
“Research is the only way that MND will eventually be defeated. I am very proud that, although probably it will be of no direct benefit to me, I am willing and able to participate in the MND-Smart trial that seeks to find a medication to tame this disease.”
Consultant neurologist Dr Andrew Barritt said: “Close integration of both research and clinical care within our expanding team ensures that people living with MND have timely access to expert advice, ensuring support from the point of diagnosis and early consideration for research opportunities.”
The trust said the development reflects its commitment to helping people live well by working with others to improve services, pathways and patient experience.
