Managing Progressive Supranuclear Palsy (PSP)

Understanding PSP and Its Management

Progressive Supranuclear Palsy (PSP) is caused by abnormal protein clumps in the brain, though the exact cause of these clumps remains unknown. Despite significant research and the presence of eight Centres of Excellence across the UK, there is currently no cure or effective medication. Management of PSP primarily focuses on alleviating symptoms.

Role of a Multidisciplinary Team

Effective management of PSP requires the involvement of a multidisciplinary team. This team typically includes:

• Neurologists: Specialists in brain disorders.
• Specialist Nurses: Provide ongoing care and support.
• Occupational Therapists: Assess needs and help maintain independence.
• Physiotherapists: Support mobility and physical function.
• Speech and Language Therapists: Address communication and swallowing difficulties.
• Optometrists: Assist with vision problems.
• Home Care Workers: Aid with daily tasks like washing and dressing.

These professionals are crucial in identifying subtle symptoms and providing comprehensive care.

The Importance of Hospice Care

Hospices play a vital role in supporting individuals with long-term neurological conditions, including PSP. They offer services such as:

• Hospice at Home: End-of-life care in the comfort of the patient's home.
• Day Support: Temporary care during the day.
• Support for Carers: Assistance and respite for those caring for PSP patients.

Hospice care is essential for providing comfort and support to both patients and their families.

Challenges and Recommendations for Healthcare Professionals

Many healthcare professionals may initially lack knowledge about PSP and other rare conditions, which can lead to misdiagnosis and delayed treatment. Key recommendations include:

• Early Referral: Refer patients to speech therapists and other specialists early to address communication and swallowing issues.
• Awareness and Education: Increase awareness among healthcare providers about PSP symptoms and management. Providing information leaflets can help improve understanding.
• Adaptation of Appointments: Schedule appointments later in the day to accommodate the needs of PSP patients, who may require more time to get ready.

Personal Experiences and Ongoing Needs

Patients and their families often find that healthcare professionals are initially unfamiliar with PSP. For instance, a patient may receive incorrect diagnoses such as vertigo or Multiple System Atrophy before PSP is accurately identified. Continuous education and better information dissemination can improve diagnosis and management.

Despite the challenges, many healthcare professionals show genuine interest and dedication. However, increased familiarity with PSP and its symptoms can significantly enhance the quality of care and support for patients.

Medication and Symptom Management

Unlike Parkinson’s disease, where Levodopa is a common and effective treatment, PSP does not respond to this medication. This lack of response helps differentiate PSP from Parkinson’s disease. Additionally, fatigue can severely impact quality of life, and managing daily activities requires careful planning and adjustments to appointment schedules.

Understanding and addressing these aspects of PSP can greatly improve patient care and support.