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Project information

Local support groups for PSP patients and carers

Local support groups help people with Progressive Supranuclear Palsy to break out of the isolation that often occurs when living with a terminal disease, and provide the best possible support and advice to enable them to cope with the day to day reality of their illness.


Charity information: The PSP Association

The PSP Association logo
  • Need


    People with PSP often become increasingly isolated as the demands of the disease and the burden of care take over their lives. The situation is made worse by the frequent lack of understanding of their condition among those to whom they turn for support, such as local health and social care departments. They often feel that they are completely alone in an increasingly difficult and distressing situation.


    Support groups provide social contact with people who understand the problems of PSP because they are living through it themselves. Patients are reassured that they no longer have to face PSP alone, and can benefit from advice on how to manage their condition and obtain the health and social care services they need.

  • Aims

    Aim 1

    To relieve the isolation experienced by people with PSP.


    » Provide a welcoming situation among people who understand the problems of living with a terminal disease.

    What success will look like

    People will feel they no longer have to cope with the disease on their own.

    Aim 2

    To help people get the best possible support from their local health and social service providers.


    » Provide up to date advice on entitlement to services and the best method of application.

    What success will look like

    They will be able to access the level of care they need at each stage of the disease.

  • Impact


    The patient will be able to remain in their own home and maintain their quality of life for as long as possible and their carers will benefit from continued support. We have conducted research that has enabled us to set a baseline against which to measure our performance.


    There are two possible risks:
    1) Not having enough people to maintain a viable group. We avoid this by monitoring attendance numbers and checking where potential attendees actually live. If a group is falling off because it is no longer in the right place we can find a new location which is more convenient to attend. 2) The quality of support we can provide. This is ensured by providing practical training for our volunteers and regular visits to groups by our staff.


    Through our Annual Report and website

  • Budget

    Budget - Project Cost: £61,320

    Loading graph....
      Amount Heading Description
      £34,953 Staff costs Office administration and staff attendance for a total of 46 groups
      £21,462 Travel Mileage, rail fares etc
      £4,905 Venue Room hire and refreshments

    Current Funding / Pledges

    Source Amount
    EVan Cornish Fiundation £5,000 Guaranteed
    Sir Jules Thorn Trust £600 Guaranteed
    Catherine Cookson Trust £750 Guaranteed
    Odin Trust £1,000 Guaranteed
    WA Young trust £1,000 Guaranteed
    Albert Hunt Trust £1,000 Guaranteed
    Douglas Arter Foundation £500 Guaranteed
  • Background


    We currently have support groups in 30 locations around the UK and Ireland. We wish to expand this to ensure no one needs to travel too far to reach their nearest group. We are encouraging local volunteers to set up local groups and take on the organisation of existing groups, which will enable more frequent meetings and a more flexible approach, There is a particular need for extra groups in the North of England and Northern Ireland.


    The number of people living with PSP in the UK is not precisely known, because it is difficult to diagnose. There are about 4000 people diagnosed at any one time, but the actual figure may be as high as 10,000..

  • Why Us?

    Why Us?

    We have twenty years experience of helping people with PSP to cope with the day to day realities of their situation. Our staff and volunteers have an unparalleled knowledge of all aspects of living with PSP.

    Read more about the Charity running this project.


    Wendy Crofts

    Wendy is responsible for managing our volunteer development programme. She has many years experience in recruiting, training and enthusing volunteers.