Our draft strategy – what would make a difference to you?

This is an exciting time for PSPA. In the winter edition of PSP Matters, we stated that we wanted to develop a strategy that set out our goals for the next three years. Our aim was to reach more people living with PSP & CBD than ever before and provide support for everyone affected by these devastating conditions.

We are determined to drive up the standards of care for people with PSP & CBD and provide them with information and support to enable them to better understand and manage their condition. We will also raise awareness of PSP & CBD with health and social care professionals and improve their knowledge and understanding. We will promote and fund research of PSP & CBD to improve the speed and accuracy of diagnosis, develop treatments and ultimately, find a cure.

We have now drafted a strategy setting out our plans, based upon the findings of our recent patient survey and a workshop which included: two people with PSP/CBD and a carer; a local group leader and PSPA Trustee; and, the PSPA management team. The output of this workshop was a draft strategy document that has since been reviewed by PSPA’s full staff and Board of Trustees. The final part of this collaborative effort will be to ask our members (that’s you – the friends, relatives and carers of people with PSP & CBD, our volunteers, fundraisers, and health and social care professionals) for their views on what we are proposing.

We will be focusing on four key goals across the charity:

  • Helping people live with PSP & CBD
  • Targeted research
  • Raising awareness and making an impact
  • Building PSPA’s capacity

Click here to view our draft strategy


Shape our future plans

To enable you to provide us with feedback, we have created an online survey with five simple questions. Your responses to these will guide the approach we take within each of the four key goal areas. It is your opportunity to shape how our services are delivered and how we invest the funds that you raise.

Click here to go directly to the survey 

Many thanks for your help!


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