Treatment and Care for Motor Neurone Disease

Available Treatments for Motor Neurone Disease

The only licensed drug for Motor Neurone Disease (MND) is Rilutek (Riluzole). Clinical trials have demonstrated that Rilutek can potentially prolong life by three to six months when taken for 18 months. Although there is no cure, ongoing research and numerous drug trials are investigating new treatments and potential causes of MND.

Current Research and Future Treatments

Research efforts are focused on understanding the underlying causes of MND. Identifying these causes could lead to targeted treatments in the future. Presently, the focus remains on managing symptoms to improve the quality of life for those affected.

Multidisciplinary Approach to Care

Due to the diverse symptoms of MND, a wide range of professionals is involved in patient care:

• Neurologists and GPs: Diagnose and manage the disease.
• Palliative Care Consultants: Address symptom management and end-of-life care.
• Respiratory Consultants: Manage breathing difficulties.
• Physiotherapists: Assist with movement and exercise.
• Occupational Therapists: Provide equipment and home adaptations.
• Speech and Language Therapists: Help with speech and swallowing difficulties.
• Dietitians: Ensure proper nutrition and weight maintenance.
• Wheelchair Services and Orthotics: Supply necessary mobility aids.
• Hospice Services: Offer support for emotional and social aspects, as well as symptom control.
• Motor Neurone Disease Association (MNDA): Provides invaluable information and support for patients, families, and professionals.

Coordinated Care and Support Services

At Colchester General Hospital, a bi-monthly meeting is held to coordinate care among various professionals. This meeting includes:

• Palliative care consultants
• MNDA Association visitors
• Speech and language therapists
• Dietitians
• Physiotherapists
• Occupational therapists

The team reviews each patient’s needs, including mobility, breathing, and future care plans. This collaborative approach ensures comprehensive care and timely interventions.

Roles of Different Therapists

Physiotherapists

Physiotherapists focus on maintaining movement and recommending exercises. They work with orthotics for foot drop and provide walking aids. They also monitor respiratory function and refer to respiratory consultants if necessary. For some patients, interventions like Non-Invasive Ventilation (NIV) may be required to support breathing at night.

Occupational Therapists

Occupational therapists play a crucial role in providing and planning for necessary equipment and home adaptations. They collaborate with wheelchair services to ensure appropriate mobility aids are supplied and coordinate with social services for major home modifications.

Speech and Language Therapists

Speech and language therapists assist with swallowing and communication difficulties, recommending safer swallowing techniques and dietary modifications. They work with dietitians to maintain optimal nutrition and discuss the potential need for a feeding tube (PEG).

Palliative Care Consultants and Hospice Services

Palliative care consultants and hospice teams offer support for emotional, social, and symptom management. At St. Helena Hospice, day services and in-patient stays are available for respite and symptom control. They help patients make informed decisions about their care, including end-of-life preferences, which are documented in a tool called ‘My Care Choices’.

Conclusion

Although not all neurological conditions require palliative care, Motor Neurone Disease often progresses rapidly, making it essential to involve palliative care services for comprehensive support.