The South West Neuromuscular Operational Delivery Network (SWNODN) organises a number of events, courses and peer support sessions each year for patients and their families. Our aim is to equip patients and their families with the knowledge and skills to better manage their condition and improve their quality of life. The SWNODN also works with a number of partner organisations when possible. Below is a list of the current events and courses available.
SWNOND Events and Courses for Patient/Public
Independent Living Days
Type of Event: Conference and workshops. Full day.
Who is it for: Adults who have a neuromuscular condition and live in the South West.
Where is it held: Various locations across the South West
What is it about: A conference which provides information and advice to support people in managing their neuromuscular condition and to live as independently as possible. Covering topics such as finance and benefits, exercise, housing adaptations, assistive technology, employment, psycho-social support, leisure activities, specialist advice and other useful resources available in your area.
Living Well with a Neuromuscular Condition course
Type of Event: Group therapy course (6 weeks). Two and half hour sessions held over six consecutive weeks.
Who is it for: Adults who have a neuromuscular condition living in the South West who are struggling to come to terms with a new or long-standing diagnosis of a neuromuscular condition. Ideally you should be able to commit to attending all six sessions.
Where is it held: Southmead Hospital Bristol and planned for Devon and Cornwall.
What is it about: A six week course that explores the emotional and physical impact of living with a neuromuscular condition. Participants are given the opportunity to develop knowledge and skills that can help manage the challenges that their health status can lead to. Covering topics such as the challenges and emotional impact of living with a neuromuscular condition, improving sleep and managing thoughts and feelings, understanding pain, ways to manage fatigue, self-management and goal setting. Attendance on this course is by invitation only, but please contact us if you think it would be beneficial to you. You can read more about the course in this leaflet SWNODN Living Well Course Leaflet Oct 2018.pdf
Parent/Carer Information & Support Workshops
Type of Event: Small Group Workshops - may be condition specific. Half day.
Who is it for: Parents/Carers of a child who has been newly diagnosed with a neuromuscular condition or need further help and advice on supporting their child as the condition progresses. Please note that these workshops are by invitation only based on need, but please contact us if you think it would be beneficial to you.
Where is it held: Multiple locations. Organised according to demand.
What is it about: A series of workshops that provide support and advice for parents/carers around key stages of their child's development.
Type of Event: Peer-led informal social networking meet-ups
Who is it for: Any adult living in the South West who has a neuromuscular condition and is keen to meet up with other people who have a similar condition.
Where is it held: Multiple locations. Organised according to demand - Please let us know if you would be interested in holding a Muscle Cafe in your area.
What is it about: Tea, coffee and cake! An informal get together that meets the needs of the group. This can be peer-support and sharing of knowledge, experience and advice. The Network can provide specialist information, advice or speakers as requested by the group.
If you think any of the above would be beneficial to you, please discuss it further with your Neuromuscular Advisor or call the SWNODN Bristol office on 0117 4141184.
Other Events provided by partner organisations
Muscular Dystrophy UK hold a number of national meetings and also run Muscle Group meetings around the South West which provide an opportunity for peer support. Our Neuromuscular Advisors often attend the Muscle Group meetings.