There are several support groups providing comprehensive information and advice for patients, their carers and families.
Support from our team
Our Care Centre coordinator and Clinical Care nurses are the first point of contact for people living with MND and their families and carers. They provide a telephone service offering emotional support, advice and education for patients, carers and fellow healthcare professionals.
The service is available during office hours and an answer phone service is available 24 hours a day.
Contact us for support
Tel: +44 114 226 5388
Out of hours advice
If you require urgent advice outside office hours, the MND Connect Helpline has extended evening hours.
If you have a medical emergency or need urgent medical advice, contact your GP, NHS 111 or the emergency services 999.
If you or someone you know living with MND is admitted to hospital we can offer specialist support and advice to assist those caring for you. Ask a relative or carer to inform the Care Centre Coordinator that you have been admitted or ask the hospital staff to contact us directly.
Support groups, information and resources
The Motor Neurone Disease Association (MNDA)
The MNDA has an excellent website including sections on diagnosis, symptom management, local contacts and current research.
The South Yorkshire branch of the MNDA has it’s own pages containing details of local support services and events.
The MNDA Forum is an active, social forum connecting people living with MND. The forum covers a wide range of topics.
MND Scotland features similar information and resources for patients living in Scotland.
myTube contains information, advice and resources to help people to make choices around nutrition support and feeding tubes.
myBreathing contains information, advice and resources to help people make choices around breathing support and ventilation.
Healthtalk has video interviews with 47 MND patients and their carers, detailing their experiences living with the condition.
Patients Like Me
Patients Like Me is a global patient networking site covering several disease-based groups, including one for MND/ALS.
Neuromuscular Support Service
Visit our Neuromuscular Service page for specific Neuromuscular Support links.