Support from the Start
If you, or someone close to you, have been diagnosed with PSP, please do get in touch with us. We are here to help.
PSP and CBD are usually first diagnosed at clinic by a neurologist or geriatrician. Having appropriate, knowledgeable support at the moment of diagnosis helps people to cope better, emotionally and practically.
Our PSP Nurses Specialists are on hand to advise and reassure at a growing number of clinics, such as the movement disorder or neuro clinics in Bristol, Newport, Newcastle, Salford, London, Brighton and Cambridge.
The nurses can respond to the many questions that arise with a new diagnosis and ongoing challenges of PSP, and get to know you and what your everyday life is like with PSP, making it easier to follow up later when you phone for advice. They can also link you up right away with our support network, including information and local support groups for encouragement and advice.
Clinics differ in style around the country and we do not yet cover all areas, so if you would like to know more about attending one of these clinics, your PSP Nurse Specialist can discuss the process with you.
Please register with us!
We have the world's largest database on PSP and CBD but this is still less than a tenth of the people we know to be affected.
Whether you have PSP or CBD, or whether you are a carer or a health or social care professional supporting someone with PSP, joining us is so important.
You will help us to:
- Tailor our support for you
- Advise professionals who are supporting you
- Build an accurate picture of PSP and CBD around the country
- Influence national and local authorities to ensure good quality local services
- Find clues to the cause, treatment and prevention, thereby supporting research
- Raise awareness and build our voice for positive change.