Project information

Specialist Care Advisers

Our plan is to help individual PSP patients and carers obtain the specific services they need during the course of their illness by assigning them a Specialist Care Adviser.

This is an ongoing project

Charity information: The PSP Association

The PSP Association logo
  • Need


    People with PSP often have difficulty accessing the care and support they need. This may be because they are unfamiliar with the health and social care system, or because those responsible for providing care do not appreciate what their needs are.


    Specialist Care Advisers have long experience of PSP and of the specific services that will be needed at the different stages of the disease. They will liaise between the patient and carer and their local health or social care provider to make sure that services are provided as and when they are needed.

  • Aims

    Aim 1

    To improve access to essential care services


    » Provide the patient or carer with a named contact who will take responsibility for their care programme.
    » Help patients and carers to understand and articulate their specific individual care needs.
    » Guide people through the intricacies of the health and social care systems.
    » Intervene where necessary with local care providers to help resolve any difficulties that are hindering the patient's care.

    More people will be able to access the services they require

  • Impact


    Patients and carers will feel better able to cope with their situation. We have carried out a survey which has given us a baseline from which to measure how many people are getting the services they need and can use this to judge how we are succeeding. We will review each patient's situation every six months.


    There is a risk regarding the quality of advice provided, and expectations raised.. We have covered this by recruiting people with proven experience of the health and social care environment, and will agree in advance what improvements can be achieved for individual patients and carers.


    Through our Annual Report and other publications

  • Budget

    Budget - Project Cost: £243,896

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      Amount Heading Description
      £210,116 Salaries for six Specialist Care Advisors
      £21,200 Travel travel, transport and subsistence
      £12,580 Backup services Administration, communications, stationery, IT, training, consultancy

    Current Funding / Pledges

    Source Amount
    Everson Trust £5,000 Guaranteed
    Robertson Trust £15,000 Guaranteed
    Florence Shute Millennium Trust £3,000 Guaranteed
    High Fraser Trust £5,000 Guaranteed
    Martin Connell Trust £1,000 Guaranteed
    Souter Charitable Trust £3,500 Guaranteed
    Pixel Fund £5,000 Guaranteed
    Childwick Trust £5,000 Guaranteed
    Riada Trust £1,000 Guaranteed
    Pilkington Charitable Trust £2,000 Guaranteed
  • Background


    Throughout the UK


    People with PSP and their carers, who are often in severe distress trying to cope with their condition. There are up to 10,000 people with PSP in the UK at any one time.

  • Why Us?

    Why Us?

    We are the only charity in the UK dedicated to supporting people with PSP and their families. We have many years experience in helping people find the best care and support at each stage of the disease.

    Read more about the Charity running this project.


    David Mills

    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.

    Liz Burr

    Has worked with people living with long term neurological conditions for many years, within NHS, private and charitable sectors.

    Jan Wilderspin

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