Project information

PSP clinics

To provide specialist support during neurological clinics

Ongoing

Charity information: The PSP Association

The PSP Association logo
  • Need

    Need

    PSP is a terminal disease which destroys nerve cells in the brain. There is no treatment and no cure. Anyone receiving a diagnosis of PSP will be devastated, and will be very anxious about their future and how the disease will affect their lives. In a busy clinic, a neurologist simply doesn’t have the time to discuss this with the patient, or to advise them on how they can best manage their symptoms. So a number of consultants have approached The PSP Association, to provide extra support.

    Solution

    One of our PSP Specialist Care Advisers attends the clinic to advise on the day to day management of the disease, recommend suitable therapies, and provide counselling. They can offer immediate support from the moment of diagnosis, and can speak with patients and carers privately to discuss their concerns.

  • Aims

    Aim 1

    To provide specialist support to people with PSP

    Activities

    » One of our PSP Specialist Care Advisers attends the clinic
    » The Specialist Care Adviser will advise on the day to day management of the disease, recommend suitable therapies, and provide counselling.
    » The Specialist Care Adviser can offer immediate support from the moment of diagnosis
    » The Specialist Care Adviser can also see patients and carers privately to discuss their concerns.

    This will enable people to feel better able to cope with their lives following such a devastating diagnosis


  • Impact

    Impact

    Attendance at a clinic will become a more positive experience for patients and their carers, as they will be able to obtain practical advice that will help them manage their illness, instead of simply being given a diagnosis, or having the deterioration in their condition monitored.

    Risk

    Any risks would relate to the quality of information and advice we can provide. The qualifications and experience of our Specialist Care Advisers will ensure that patients and carers have access to the most accurate and up to date information available.

    Reporting

    Feedback from clinic sessions will be given in our annual report

  • Budget

    Budget - Project Cost: £12,000

    Loading graph....
      Amount Heading Description
      £7,200 Time SCA attendance and travelling time
      £4,800 Travel Travel mileage and subsistence
  • Background

    Location

    We currently provide this support in eight hospitals around the country, and have a number of invitations outstanding for which we need to find extra funding.

    Beneficiaries

    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 disagnosed at any one time, but the actual figure may be more like 10,000.

  • Why Us?

    Why Us?

    The PSP Association has been working since 1994 to improve the level of care available to people with PSP and our Specialist Care Advisers have a wealth of experience in supporting people with terminal illnesses.

    Read more about the Charity running this project.

    People

    David Mills

    With a background in community and hospital social work, I try to make sure that people are given the best advice about the kind of help they need.

    Kathy Weston

    A physiotherapist with 12 years’ experience in neurology. Also has very personal experience of PSP as she cared for her Mum who had the condition.

    Jan Wilderspin

    Background in working for Social Services and voluntary sector, determination and understanding of the ‘systems’ to achieve the greatest support.