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Contact usMyasthenia gravis
The Health Innovation Network (HIN) South London has been supported on two occasions to lead projects aimed at exploring what is required to improve the care for people living with myasthenia gravis.
This work was supported by an unrestricted educational grant from UCB Pharma Ltd who were not involved in the development of either project or their outputs. UCB is a global biopharmaceutical company focused on severe neurological and immunological conditions.
What is myasthenia gravis?
Myasthenia gravis (MG) is a rare, long-term, autoimmune neuromuscular condition that causes muscle weakness. It is one of several thousand known conditions affecting fewer than one in 2,000 people in the United Kingdom. It is, by definition, a rare disease. Like many rare diseases, MG has not received the same degree of focused attention and research as more common chronic illnesses.
MG most commonly affects the voluntary muscles that control the eyes and eyelids, facial expressions, chewing, swallowing and speaking, and limbs, but can affect other parts of the body and cause significant fatigue. It can affect people of any age, typically starting in women under 40 and men over 60.
It is estimated that 34 in 100,000 people are living with MG in the UK, suggesting there are approximately 23,000-24,000 people living with this condition.
People with rare diseases like MG may often feel forgotten, misunderstood, or not listened to. The challenges they face can be magnified by social isolation and worries around healthcare needs that are not being addressed.
MG presents unique challenges for patients, caregivers, and healthcare providers who support them.
Consensus Report – February 2023
The HIN lead a consensus development programme to build an understanding of what would be required to elevate standards of care for people living with myasthenia gravis in the UK.
The report detailed insights and recommendations about the key areas on which to focus framed around the four priority areas in the UK Rare Diseases Framework.
Key areas
Helping patients get a diagnosis faster.
Increasing awareness of rare diseases among healthcare professionals.
Better co-ordination of care.
Improving access to specialist care, treatments and drugs.
The report made recommendations to speed up diagnosis, increase awareness of MG among healthcare professionals, improve co-ordination of care, and improve access to specialist care and drugs.
Some of the recommendations could only be realised by national leaders and policy makers, but others were possible through the collective endeavours of clinicians and managers working in partnership with people affected by myasthenia gravis across the health and care system.
Read the full report to find out more.
Myasthenia Gravis Transformation Network Report – March 2025
A Roadmap for Improving Care for People with Myasthenia Gravis in the NHS
The HIN were supported to develop a roadmap of practical recommendations at both practitioner and system levels, that might lead to improvements in care for people living with MG. By acting on these insights, MG care across the NHS can be reshaped, ensuring better experiences and outcomes for everyone affected by this condition.
This report captures the key insights and outputs from a series of network meetings held as part of the Myasthenia Gravis Transformation Network. Through discussions and collaborative exercises, the Network identified four key themes that reflect the most pressing challenges faced by MG patients, carers, and healthcare professionals.
Patient Empowerment.
Supporting people with MG to advocate for themselves and be active partners in their care.
Information and Education.
Increasing awareness and knowledge among healthcare professionals and the public to improve diagnosis, treatment, and support, and reduce stigma and social isolation.
Working Differently.
Improving integration of services, care pathways, and multidisciplinary working.
Adopting Innovation.
Exploring new technologies, approaches and drugs that could improve efficiency, diagnosis, and treatment.
Read the full report
Other useful resources
It can be used in meetings or discussions.
Acknowledgements
The HIN would like to thank all the organisations working to improve the standards of care for people living with myasthenia gravis. Thank you to the individuals who participated in these projects and who generously shared their time and experiences to improve standards of MG care. Without your contributions, these programmes of work would not have been possible.
