The optimal clinical pathway

Ideal practise

• Accurate and timely diagnosis. Where diagnosis is uncertain this should be discussed.
• Referral to specialist neuromuscular services for ongoing care and diagnostic challenges. Our neuromuscular services directory.
• Integration of diagnostic services with related specialities (e.g. respiratory, cardiac care).
• Development of a personalised care plan including:
  • Clear condition explanation (including co-morbidities and potential implications)
  • Comprehensive treatment options
  • Contact information for the patient’s neuromuscular care team and ongoing specialist care.
  • Recommendations for support services and self-management strategies. We have support services your patients can use.
  • We have a care plan you and your patients can download and use.

Barriers

• Insufficient capacity in neuromuscular and diagnostic services.
• Uneven distribution of expertise amongst healthcare professionals.
• Limited access to specialists in some regions.
• Lack of training and professional development for neuromuscular consultants.

Potential solutions

• Increased time for neurology appointments.
• Increased training and professional development for neuromuscular consultants. Browse our professional upskilling events and online courses.
• Equitable consultant availability across all regions.

Key metrics

• Percentage of patients seen in a specialist neuromuscular disease clinic within eight weeks of referral.
• Percentage of patients who have an agreed care plan.
• Percentage of patients who receive neuromuscular follow-up.

Ensuring early diagnosis will save the NHS money as well as improving outcomes for patients. Access to specialist neuromuscular services can reduce preventable admission to hospital, length of stay in hospital, number of readmissions and in-hospital mortality.

Ideal practise

• Consultant led triage: specialist neuromuscular centres should be led by physicians with demonstrable expertise in muscle wasting conditions. As well a continuous training and professional development these individuals should provide peer education and engage in research. A significant proportion of their workload should focus on neuromuscular care.
• Holistic specialist multi-disciplinary care; consultants, physiotherapists, psychologists, dieticians, nurses and access to therapies (e.g. occupational, speech). Collaboration with respiratory, cardiac, mental health and paediatric services for transition.
• Comprehensive care plans including emergency and long-term care plans to enhance self-management and reduce hospital admissions for patients with complex needs.
• Support to self-manage through IT e.g. patient held digital records and apps as well as referral to third sector websites and peer-to-peer support groups. Browse our support and information.
• Regular follow-up during critical disease phases, offer ongoing support triage patients effectively to more specialised tertiary and quaternary care as necessary.
  • Tertiary care should be provided at all neurology centres: specialist diagnostic services, therapies, specialist psychology service, specialist physiotherapy, specialist nurse/neuromuscular care advisor, complex home ventilation service, specialist cardiac support, specialist genetic counselling, surgical intervention.
  • Quaternary services only need to be provided at some centres. They should be closely linked to tertiary care e.g. some genetic and metabolic services.
• Integrated services; collaboration between health and social care.
• Patients accessing research and clinical trials through registries to expand our knowledge of neuromuscular conditions at every stage of the clinical pathway.

Barriers

• General neurology services often lack neuromuscular expertise.
• Community and secondary care services repot a lack of expertise and support for managing patients with neuromuscular conditions.
• Lack of specialist diagnostic and treatment services e.g. respiratory and cardiac services.
• Lack of capacity and incentives to enable patient research participation.
• Lack of funding for registries and inadequate neuromuscular networks.
• Lack of consensus on research priorities.

Potential solutions

• Clear guidelines for referrals to neuromuscular, specialist and transition care.
• Establishing direct links between specialist and community services.
• Targeted education programs for primary and secondary care. We have specialist online courses and upskilling events for primary and secondary care practitioners.
• Development of specialist neuromuscular diagnostic and treatment services within each neuroscience centre with robust data collection.
• Support research: free up capacity, support clinical research fellowships, support for existing and new disease registries (browse our directory of patient registries), develop a structured process for all stakeholders to establish research priorities in neuromuscular conditions.

Key metrics

• Timeliness and frequency of follow-up appointments.
• Frequency of respiratory function assessments and availability when symptoms arise.
• Percentage of patients receiving cough assist, nutritional advice, specialist psychological support, prescribed medication, paediatric-adult transition clinics, access to research/trials and communication assessments (who require them).
• Percentage of patients who have had a discussion around end-of-life care, the frequency of this discussion and access to palliative care services.

Access to appropriate treatment can see a significant improvement in disability, an improved quality of life and reduced long term health and social care costs.

Mental health problems have a significant impact on quality of life, reduce compliance with treatment and increase risk of complications and admission to hospital. Dedicated psychological support can reduce these poor outcomes.

Access to self-management programmes and support groups can also help people to navigate the service.