The HIN conducted a series of network meetings focused on improving care for people with myasthenia gravis within the NHS. The report summarises the discussions and outputs.
Myasthenia gravis (MG) is a long-term, autoimmune neuromuscular condition that causes muscle weakness. It is a condition affecting fewer than one in 2,000 people in the United Kingdom. It is, by definition, a rare disease. It presents unique challenges for patients, caregivers, and healthcare providers who support them. Improving care for people with MG requires:
Joined up thinking.
System wide collaboration.
Willingness to rethink how care is currently designed and delivered.
The series of network meetings were part of the Myasthenia Gravis Transformation Network. The sessions brought together a diverse group of stakeholders to explore what can be done to improve MG care within the NHS. These groups involved:
Clinicians.
People with lived experience of MG.
Representation from the third sector.
The Transformation Network approach
What is a transformation network?
Transformation networks bring diverse groups together to tackle complex challenges. Members build a deeper understanding of the issue by sharing their knowledge and perspectives. The network then co-creates solutions that drive rapid progress and meaningful change.
Transformation networks are intended to be non-hierarchical, with everyone's voice and expertise heard. They allow people to work across traditional organisational and professional boundaries.
Myasthenia Gravis Transformation Network
The Myasthenia Gravis Transformation Network aimed to improve patient care and patient experience. The collaboration involved: healthcare professionals; people with lived experience of MG; and colleagues from the voluntary sector.
Over the course of the network meetings, the participants worked together to:
Understand the challenge by sharing diverse insights and perspectives.
Develop a clear problem statement that captured the core issue.
Co-create potential solutions that addressed the problem in innovative ways.
Through this work, we sought to build on the recommendations from the MG Consensus Report. We developed a roadmap for improving the lives of people living with MG.
Insights
From discussions with network members, the following problem statement was developed:
The problem is inequity of access to timely diagnosis, quality care, and pathways. Holistic support varies across the UK. Inequity in accessing timely diagnosis can be caused by a lack of knowledge and awareness of MG. Sometimes this leads to misdiagnosis.
It affects patients, carers, families, and healthcare providers navigating the system.
Delays to diagnosis and variations in treatment and care have system-wide consequences. For patients, it can result in:
Distress.
Worsened mental and physical health.
Impaired quality of life.
For the healthcare system, delays and misdiagnoses are costly. To tackle these challenges, the following points need addressing:
Capacity of the system.
Communication between services and professionals.
Knowledge and awareness of MG.
“Healthcare providers” refers to more than just MG specialists. It includes professionals from many disciplines who encounter MG patients. For example: physiotherapists, speech therapists, MG nurses, A&E staff, GPs, opticians, dentists, mental health professionals, pharmacists, and occupational therapists.
A roadmap for improving care
The Myasthenia Gravis Transformation Network identified four key themes that reflect the most pressing challenges faced by MG patients, carers, and healthcare professionals. These themes highlight major barriers to care. Concrete actions are proposed to improve diagnosis, treatment, service integration, and patient experience.
While some recommendations require significant investment, others can be implemented within existing capacity. This would be through improved awareness, education, and changes in practice. Or it can be implemented by partnering with established rare diseases organisations.
Some innovative approaches and system changes may initially need more funding. In the long-term it could improve efficiency and reducing delays. As a result, the cost savings could be greater than the initial investment.
The recommendations offer a practical roadmap for improvement to reshape MG care across the NHS. These are applicable at both practitioner and system levels. By acting on these insights, we can ensure better experiences and outcomes for everyone affected by this condition.
Patient empowerment
People with MG often feel unheard or dismissed by healthcare professionals. Some healthcare professionals are less aware of MG, especially in A&E or primary care. This challenge is exacerbated by MG symptoms resembling other conditions. For example, swallowing difficulties and limb weakness from MG mirrors stroke symptoms. It can also take a long time to confirm an MG diagnosis. As a result, many people with MG find themselves doing their own research of their condition to self-advocate for appropriate treatment and referrals.
Empowering MG patients and their carers will help them to cope better with their condition. By giving patients the tools, they can navigate the healthcare system more effectively, and advocate for themselves in clinical settings. This has a profound impact on them, both physically and psychologically, improving their health and wellbeing.
Actions that require minimal additional resources
Recognise patient expertise.
Many MG patients develop extensive knowledge of their condition, symptoms and treatments. Patients should be treated as partners in their care, even before a formal diagnosis.
Promote shared decision-making and treat with informed consent.
Healthcare professionals should ensure that patients' voices are heard. Respecting patient autonomy and experience is key – ‘no decision about me, without me’.
Availability of accurate clinic letters.
Encourage the use of the NHS App for people with MG to view their clinic notes. Encourage patients to bring clinic letters for all their conditions to appointments (for all specialties). This will aid communication and ensure joined-up care.
MG patients may be entitled to Personal Independence Payment (PIP) and Blue Badges. myaware have a dedicated welfare officer who helps people with their applications.
Ensure patients are aware of existing resources.
This can support their self-advocacy and self-management. For example, the list of “drugs to avoid” on the myaware website.
Actions that require investment but could save costs in the long term
Develop further resources.
Where not currently available, develop resources that educate/support people with MG. This could include topics like:
How to best describe their condition and symptoms to healthcare professionals.
How to advocate for themselves.
How to navigate the system.
How to cope with day-to-day living with MG symptoms.
Drug side effects and obscure symptoms.
How to exercise safely.
How to explain MG to family, friends, work colleagues etc.
These resources should be centralised or held in one place. It is important for it to be easily accessible to people with MG.
Increase education for healthcare staff on the MG patient experience.
This should focus on patient autonomy, compassion, and respect.
Develop self-management programmes.
Support MG patients (and their carers) in gaining skills to manage their condition, and confidence to advocate for their own care. Where practicable, offer face-to-face, peer support.
Increase public awareness of hidden disabilities.
Especially of disabilities in young people. This can be achieved by potentially partnering with other organisations already involved with this work.
Information and education
There may be limited awareness and knowledge of MG among non-specialists. This includes GPs, general neurologists, and emergency and hospital staff. Limited awareness contributes to delays in diagnosis and inappropriate management. MG presents differently in each patient, making recognition difficult without specialist knowledge.
Increased recognition of MG symptoms by non-specialists will lead to earlier referrals. This will result in more timely diagnoses, and better patient outcomes.
Actions that require minimal additional resources
Develop educational materials on MG for healthcare professionals.
This includes GPs, hospital staff, general neurologists, nurses, pharmacists and opticians. Ensure the resources are high quality. They should be targeted and co-designed for the knowledge needs of these groups.
Collate existing resources about MG for healthcare providers.
Ensure that this database/repository is kept up to date.
Leverage existing organisations to supplement medical education.
For example, Medics for Rare Diseases – Rare 101.
Use National Institute for Health and Care Excellence (NICE) guidelines [NG127].
Encourage clinicians to refer to the guidelines on suspected neurological symptoms.
Target opticians in awareness campaigns.
They often see ocular MG symptoms before GPs.
Actions that require investment but could save costs in the long term
Expand MG education in undergraduate and postgraduate curricula.
This will prepare the next generations of clinicians with greater awareness of MG.
Develop digital learning resources (e.g. podcasts, e-learning modules).
These would be aimed at reaching more healthcare professionals.
Establish accredited MG updates for acute medics, A&E doctors, and GPs.
MG nursing courses to be made widely available to clinicians.
Ensure virtual and face to face courses such as those hosted by The Neurology Academy.
Increase MG knowledge among medical professionals at events.
This would highlight the “invisible” nature of the condition and the impact of a hidden disability.
Develop an MG awareness campaign to improve public understanding and reduce stigma.
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Encourage media representation of MG stories.
This has the potential to bring visibility to the disease and bring MG stories into mainstream conversations.
Working differently
People with MG experience fragmented and inconsistent care. This occurs due to poor coordination between primary, secondary, and tertiary services. Long waiting times and unclear referral pathways can be confusing for patients. Hospital funding models do not support long-term follow-up for rare disease patients. This contributes to inequitable access.
Working differently will lead to overall more joined-up care. In turn, there will be reduced delays and improved patient experience. This leads to better disease management and quality of life.
Actions that require minimal additional resources
Improve communication between healthcare professionals.
Joined up communication between specialists, general neurologists, and GPs facilitates a seamless patient journey.
Develop a best-practice MG pathway.
This is for diagnosis and management of MG. It should also include clear referral guidance.
Increase the use of multidisciplinary teams (MDTs).
MDTs support and ensure joined-up care for complex cases.
Standardise MG guidelines.
To be used when referring to a specialist MG clinic.
Actions that require investment but could save costs in the long term
Improve access to complete and accurate shared care plans and records.
This will improve continuity of care (e.g. the London Care Record).
Explore digital solutions to facilitate MDT collaboration.
Improve commissioning for rare disease care.
This aims to ensure sustainable and well-resourced follow-up care.
Consider accrediting specialist MG centres.
It can potentially attract funding and raise awareness.
Actions that require significant investment
Develop a minimum level of digital technology UK-wide.
This will improve continuity of care (e.g. the London Care Record).
Increase the number of neuromuscular consultants and MG nurse specialists.
It would improve access to timely advice and treatment.
Assess the distribution of Clinical Nurse Specialists.
In doing so, it can ensure national equity.
Expand Neurology Rapid Access Clinics (also known as “hot” clinics).
These are consultant-led clinics where people with acute or sub-acute neurological symptoms can be seen quickly. It means that they are not on the usual referral pathway. Therefore, it can ensure faster assessment of referrals of suspected MG.
Adopting innovation
There is a lack of data integration, research, and innovative approaches in MG care. AI, digital solutions, and new therapies could improve diagnosis, efficiency, and treatment outcomes but require investment.
Access to data will inform changes to service provision and quality improvement. The use of digital solutions, research discoveries, new therapies and new models of care could improve diagnosis and treatment. It could in turn improve the quality of life for people living with MG.
Actions that require minimal additional resources
Improve monitoring of immunosuppressant treatments to reduce complications.
Actions that require investment but could save costs in the long term
Expand a national patient registry to track outcomes and support research.
Encourage and support more MG-related research and publications.
It can inform better care models and identify methods to individualise treatment choices.
Actions that require significant investment
Expand access to new and advanced evidence-based MG treatments.
This will support ensuring equity across regions.
Reduce waiting times for MG treatment.
Expand virtual clinics.
This would provide more flexible access to neuromuscular consultants.
Develop digital tools (using artificial intelligence or automation).
To be used in assisting with diagnosis, waiting list prioritisation, and patient deterioration detection. It could ensure timely intervention.
Acknowledgements
We 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 this project and generously shared their time and experiences to improve standards of MG care. Without your contributions, this programme of work to develop a roadmap would not have been possible.
This report includes contributions by people who attended the Network meetings. We have named these people below. We are especially grateful to the people with lived experience who were very willing and open in their contributions.
Andy Coyne, Person with lived experience
Cormac Kelly, Person with lived experience, Retired Orthopaedic Consultant, The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust
Craig Van Ness, Person with lived experience
Isla Robert, Person with lived experience
Zainab Alani, Person with lived experience, medical student and rare conditions advocate, University of Glasgow School of Medicine
Jennifer Spillane, Consultant Neurologist, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, Guy’s and St Thomas’ NHS Foundation Trust
Katy Dodd, Consultant Neurologist, Manchester Centre for Clinical Neuroscience, Northern Care Alliance NHS Foundation Trust
Hannah Smith, Highly Specialist Neuromuscular Nurse, Salford Care Organisation, Northern Care Alliance NHS Foundation Trust
Caroline Chill, General Practitioner (GP), Pallant Medical Chambers, Clinical Director, Community and Care Home Programmes, Health Innovation Network (HIN) South London
Charlotte Campbell, Research and Partnerships Manager, myaware
Myaware is the only charity in the UK solely dedicated to the advocacy, care, and support of people affected by the myasthenias.
Their key goals are to: support people affected by myasthenias; raise awareness about these conditions; and fund research to find new therapies to reduce the impact of the conditions.
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