If you have PSP or CBD, or are caring for someone who does… then is a good way to keep up to date and access information and support.
You will be helping other people in the process, by building the world's largest database on PSP and CBD to raise awareness, whilst helping us to provide the most appropriate support and generate research for positive change.
We offer a range of services to support people with PSP, their friends, families and carers. The Association also offers information and advice to medical professionals.
Carers' Information Pack
We send this free to all new subscribers. The pack is full of information and practical advice about managing PSP and CBD and finding useful support.
It is also available to purchase through our online shop at £20.
Magazine
'PSP Matters' is the magazine of The PSP Association. It is published three times a year and features the latest news about our work, and updates on research and care. It is automatically sent to all subscribers or can be purchased for an annual cost of £9.
Helpline
The Telephone Counselling Service is one of the main sources of information for people who have just been diagnosed with PSP or CBD, and their families. The nurses are able to reassure and advise, and provide support, information and a 'listening ear'.
The line is open all day, every day and has an answer phone service so, if for any reason the nurse is unable to take your call, they will ring you back as soon as possible.
The nurse can also give information to health and social care professionals or anyone else directly supporting you or anyone else with PSP or CBD.
I must say how grateful I am to my PSP nurse. She is so kind and understanding. I have rung for advice, comfort and also when I have felt in the depth of despair. She is always calm and reassuring. Please let her know what a great support she has been. - PSP patient.
Care and Support Groups
Meeting every four months, our Local Care and Support Groups provide an opportunity for carers and families to meet others in a similar situation, talk with the PSP Nurse for that region and be updated on the latest developments in PSP research and support. We now run groups in more than 20 venues throughout the UK and Ireland.
The meetings are arranged by our team of Development Officers who are busy raising awareness amongst health and social care professionals. They will contact any professionals you tell us about on the application form.
Local networks
You can also sign up for details of other families in your area, who have agreed to be contacted, for mutual support. To be part of a local network you must be a subscriber to The PSP Association. If you are already a subscriber let us know and we will sign you up to a local network right away.
Where we have a Development Officer for your area we will also send details of local resources and support available. To find out more about news and events in your area, see our Local to You section
Annual Symposium
Subscribers are offered discounted rates for our PSP Symposium, a conference held each year in a different part of the UK for carers and therapists. At each Symposium invited speakers, eminent specialists in their respective fields, update attendees on the latest developments in research and care. Click here for the summaries from this year's event.
Web forum
Our PSP web forum is there whenever you want to listen in, share your experiences, read about tips that have worked well for others, or simply want to ‘offload'.
Equipment - Prism Glasses
Prism glasses can help where eye movement is proving difficult; for example, they are suitable for short periods, such as when eating a meal or reading a newspaper, though are not suitable for use when walking as they can affect balance. Thanks to the very kind support of an anonymous donor, we can now supply prism glasses. (£10 for non subscribers, £5 for subscribers, to cover post, packing and administration. Please allow 28 days for delivery.) For further information or to place an order please contact or call . We would always advise contacting your orthoptist / eye specialist for advice as such equipment may not suit everyone.