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Motor neurone disease care centre

Motor neurone disease (MND) is a rare progressive neurodegenerative disorder which attacks the motor nerves in the brain and spinal cord. Symptoms often include increasing weakness in the arms and legs, speech and swallowing difficulty, cramps and spasms, as well as muscle wasting.

In order to diagnose MND, patients undergo a comprehensive assessment by a consultant neurologist and may be admitted for a short stay in the centre to speed up the investigations.

Ongoing support

A care centre coordinator is available to support the patient, their family and the consultant when the patient is told of their diagnosis. The care centre coordinator will act as a single point of contact at this stage and will follow up the diagnosis by contacting the patient and their family to pick up any concerns, anxieties and questions and to offer further support. The coordinator will also identify a key contact, usually a therapist based in a community multidisciplinary team, to become a local key worker for the patient.

Monthly clinic

Patients are invited to attend the monthly MND clinic running at the Wessex Neurological Centre on the second Monday in the month, in order to coordinate their care with the doctors and health care workers from many different services at the hospital and in the community.

Soon after diagnosis, we will discuss nutrition and respiratory support. We liaise closely with Dr Jane Wilkinson, consultant respiratory physician, to provide expert advice and support for non-invasive ventilation (a mask or similar device to help with breathing). We will also assess the patient's nutritional requirements and, if appropriate, refer them for placement of gastrostomy tube (a feeding tube that goes directly into the stomach).

At an appropriate time, patients are referred to palliative (end-of life) care. This is a limited service for Southampton and Winchester patients.

Research

MND patients are routinely and proactively offered the opportunity to participate in research activities appropriate to the nature of their condition. We predominantly link with the Oxford MND Care Centre in relation to the LiCALS and Biomarkers trials and the King's care centre for the DNA Bank project.

Contact the motor neurone disease care centre

Contact Clare Erridge, motor neurone disease care centre coordinator:

History of the Southampton MND care centre

The Southampton MND care centre was established in January 2006 following a generous grant from the Motor Neurone Disease Association (MNDA) and the appointment of Clare Erridge, MND care centre coordinator.