Updated: Apr 27
In an exciting collaboration of Promotus members, CBD Solutions sponsored PSPA to develop a guide to CBD. As the press release below indicates, the approach adopted is the first of its kind in the world, and demonstrates what is possible when PSP|CBD Associations work together.
To complete the guide, PSPA co-funded with UCB the development of the PSP support information. The guide has been built on a platform that will allow the support materials to be published in multiple languages. PSPA are actively seeking sponsorship for the translation process.
New interactive resource provides expert information on rare neurological diseases
PSPA, a charity supporting people affected by devastating neurological conditions Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), has launched a new online interactive resource for health and social care professionals (HSCP’s) involved in caring for people living with both conditions. The resource is the first of its kind for PSP & CBD and provides evidence-based information on symptom management and best practice.
PSP & CBD is caused by the progressive death of nerve cells in the brain, leaving people unable to balance, walk, talk, eat, swallow, drink and see. A person living with PSP or CBD may need to be in contact with up to 20 different HSCP’s at any one time, ranging from speech and language therapists, to occupational therapists, dieticians and specialist nurses. Despite the devastating impact of PSP & CBD, both conditions remain little understood, with most HSCP’s unaware of the condition and how to support those living with it.
To help drive up standards of care people with PSP & CBD receive, PSPA has created an online interactive resource that HSCP’s can use when caring for people with PSP & CBD. The resource will provide professionals with immediate access to the very latest evidence-based information on all aspects of both conditions direct to their tablet or computer. It enables the professional to be in the patients’ home and create a care plan in consultation with the patient.
PSPA’s Director of Engagement, Carol Amirghiasvand said: “Some people living with PSP or CBD can deteriorate quickly, so it is vitally important for them to get the support of specialists across a range of areas as quickly as possible. While there is currently no treatment for PSP or CBD, with the right care many symptoms can be managed to help people achieve the best possible quality of life.
“We know that lack of knowledge and awareness of PSP & CBD can hamper health professionals’ ability to provide good care. Alongside this, issues around coordination of care can also mean families are having to deal with a large number of professionals who may be unfamiliar with the issues faced by living with these progressive conditions.
“People living with PSP or CBD do not have time for professionals to learn on the job so it’s important professionals are supported to get the care right first time round. Our new interactive resource will deliver expert advice straight to professionals’ fingertips. So whether they are a speech and language therapist, or a dietician, they will be able to directly access information on practical solutions that can help overcome some of the problems people living with PSP & CBD experience.”
To access PSPA’s online resource visit: www.hscpguide.com