One of the biggest challenges faced by people living with rare neurodegenerative conditions like Progressive Supranuclear Palsy and Corticobasal Degeneration is simply being heard and understood. Lack of awareness about PSP & CBD, especially among healthcare professionals, often leads to misdiagnosis in the early stages and blocks access to the right support when they need it most.
Even after receiving a diagnosis, people often experience isolation due to the rare nature of the conditions and the general lack of awareness around support services. At PSPA, we recognise the importance of raising awareness and understand that our work is important because people with PSP & CBD do not receive timely diagnoses or adequate support and care.
As part of our continued commitment towards this goal, we are organising CBD & PSP awareness events in Lincolnshire on 25 March to bring Progressive Supranuclear Palsy and Corticobasal Degeneration into sharper focus and provide a secure and supportive environment for people affected by these conditions to share their experiences.
Family Day
Designed for people living with PSP & CBD, family members of all ages, carers, and friends, the regional family day event will provide an opportunity for a get-together in an informal and relaxed setting. You will have the opportunity to share your lived experiences and build local support networks with families affected by PSP & CBD and the PSPA staff. The programme will include an introduction by Peggy Newton, our Helpline & Support Services Manager and talks by the following speakers:
- Research in PSP by Neurologist, Dr Tim Rittman
- Inpatient Experience by Parkinson’s Advanced Clinical Practitioner, David Smith
The event will take place on the morning of Wednesday, 25 March, from 9 am to 1:30 pm, with lunch provided afterwards. You can learn more about the event and register for it here.
Awareness Event for Health and Social Care Professionals
The second awareness event is for healthcare professionals who support people living with PSP or CBD. It is designed to give a broad overview of Progressive Supranuclear Palsy and Corticobasal Degeneration, providing the opportunity to learn more about both conditions, recognising signs and symptoms and ways to manage them. The programme will include an introduction by Peggy Newton, our Helpline & Support Services Manager and talks by the following speakers:
- Heterogeneity of PSP by Neurologist, Dr Tim Rittman
- Inpatient Experience by Parkinson’s Advanced Clinical Practitioner, David Smith
The Health and Social Care Professionals event will take place in the second half of the day on 25 March, from 1:30 pm to 4:30 pm, with hot drinks and pastries provided at the time of registration. You can learn more about the event and register for it here.
Both the Family Day and Healthcare Professionals events will take place at The Petwood Hotel, Stixwould Road, Woodhall Spa, LN10 6QG.
If you have any questions or concerns about the events, please email helpline@pspassociation.org.uk.
