Our Services
The PSP Association offers a range of services providing support to people with PSP, their friends, families and carers. The Association also offers information and advice to medical professionals.
Telephone Counselling Service
The Telephone Counselling Service is staffed by our PSP Nurse Specialists who offer advice, information and support to anyone affected by PSP. Upon joining The PSP Association one of the Telephone Counselling Nurses will contact you.
Your nurse is there to support you. You can contact your nurse at any time. There is also an ansaphone service, so if for any reason they are unable to take your call, they will ring you back as soon as possible.
The Telephone Counselling Service is one of the main sources of information for people who have just been diagnosed with PSP, and their families. The nurses are able to reassure and advise, and provide support, information and a 'listening ear'.
“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.
The Telephone Counselling Service is intended for the use of people with PSP, their families and carers. For all other general enquiries, please call 01327 322410.
Information Packs
All new subscribers to The PSP Association are sent a full information pack about the disease and the Association. The pack includes a copy of the Guide to PSP and CBD.
PSP Bulletin
The PSP Bulletin is the newsletter of The PSP Association. It is produced three times a year and includes updates on the latest research into PSP, articles and reports on support, fundraising and awareness and letters from readers. The Bulletin aims to keep readers up to date with the activities of The PSP Association. Visit the Publications section of this site to download the latest edition.
Local Support Groups
Upon joining the PSP Association our Director of Care and Support will be in touch to see if you, your carer and/or other family members would like to join a Local Support Group. There are 20 PSP Support Groups across the UK, including a group in Scotland and in N. Ireland. The groups are run by the Director of Care and Support and are attended by one of our PSP Nurse Specialists. The groups are a useful way to exchange experiences, information and concerns with others in a similar situation.
Your subscription is to help cover the costs of the above services. However, where a case of genuine hardship is submitted, we waive subscription costs.
View the list of Support Group Meetings for Spring 2008.
Annual Symposium
HRH The Duchess of Gloucester GCVO speaks to a carer at a PSP annual Symposium
Each year, The PSP Association holds a Symposium for carers and therapists, in a different part of the country. These symposia are chaired by leading neurologists in, or near, a major teaching hospital. We rotate venues around the UK to give all carers an equal opportunity to attend one of these without excessive travel.
Locations have included Bristol, London, Oxford, and Nottingham. The 2007 Symposium was held in Newcsatle-upon-Tyne. The programme for the day included updates on the disease itself, research into its cause, treatment and cure, and support and awareness issues of concern to carers and therapists.
Click here to view the 2007 programme
Click here to view abstracts of the 2007 presentations.
The 2008 Symposium will be held on Wednesday 17th September at the Hope Hospital in Manchester.
Development Officers
As part of The PSP Association’s transformational growth plan we have currently recrutied six Development Officers (DOs), and are looking to recruit more so that the whole of the UK is well represented. Each DO is responsible for a different part of the UK with the aim of developing contacts with relevant health and social care professionals, spreading awareness of PSP amongst relevant health professionals and regional policy makers in the area and assisting the development of PSP local support groups in the area.
Click here to find out more about our PSP Information Seminars for Health and Social Care professionals in:
In this way we hope to ensure that more PSP patients, their carers and families will receive appropriate levels of care and support; and issues and concerns can be addressed locally.
