PSP (Progressive Supranuclear Palsy) is a degenerative illness that destroys nerve cells in the brain. There are about 10,000 people with PSP in the UK, mostly in their 60s and 70s, although it can sometimes occur as young as 40.
People with PSP become increasing disabled, as they are gradually robbed of their balance and mobility, vision, speech and the ability to swallow. Life expectancy is about seven years, but can vary considerably, as PSP is very ‘individual’ in the way it develops.
People with PSP often have problems getting the care and support they need because many doctors, nurses and other health professionals have never encountered PSP, or even heard of it. As the disease progresses and becomes more disabling, carers (usually elderly themselves) are often overwhelmed by the burden of looking after a loved one.
There is no cure for PSP, or any effective treatment, but there is still a lot we can do to help people with PSP and their carers obtain the best possible care and support, and maintain their quality of life for as long as possible.
The Association do this in a number of ways:
Their panel of healthcare experts have drawn up a Pathway of Care to provide a guide to best practice in providing care throughout the course of the disease
Their Specialist Care Advisors help people navigate the health and social care systems, and obtain the services they need, as and when they need them
Their local support groups provide practical and emotional support and help people overcome the isolation that can so easily follow a diagnosis with PSP
They provide a telephone and email Helpline for people with PSP, their carers and health professionals looking after them
They have recruited a team of Volunteer Befrienders to help people with PSP in their own homes
They promote and fund research to find a treatment or cure for PSP
No one should have to face PSP on their own. Your support will help The PSP Association make sure there is help always available.