In late 2025, we invited people living with PSP or CBD, as well as family members and carers, to take part in our third PSPA Survey. The survey explored experiences of diagnosis, daily life, caring responsibilities, research and support, providing an opportunity for people affected by PSP & CBD to share their stories and shape a better future.

It can have a profound impact on every aspect of life. The conditions can affect movement, speech, swallowing, vision, cognition and independence, creating significant physical and emotional challenges for both those diagnosed and the people who care for them. Many people face lengthy journeys to diagnosis, difficulties accessing the right care and support, and uncertainty about the future.

Through the survey, PSPA sought to build a clearer and more comprehensive picture of what life with PSP & CBD looks like. It aimed to identify where healthcare, social care and support systems are working well, where gaps remain, and what changes are needed to improve the lives of everyone affected by these rare diseases.

You can read about the findings from this campaign in our latest Survey Report.

Too many people affected by Progressive Supranuclear Palsy and Corticobasal Degeneration struggle to access NHS Continuing Healthcare (CHC), despite having significant and complex care needs.

Through our #FixCHC campaign, PSPA called on the UK Government to make NHS Continuing Healthcare more accessible for people living with PSP & CBD. We asked supporters to share their experiences directly with their MPs and urge them to reform the CHC system to better support their needs.

At the heart of the campaign were the voices of people who had experienced the emotional and financial impact of navigating a complex and often inconsistent process while coping with a life-changing diagnosis. Families told us about the stress of fighting for support at a time when they should have been focusing on spending precious time together and ensuring their loved one received the care they needed.

By raising awareness of these challenges and advocating for change, #FixCHC highlighted the urgent need for a better system that recognises the realities of living with PSP & CBD and provides timely access to the care and support people deserve.

Around 270+ supporters took part in the #FixCHC campaign that led to MPs submitting parliamentary questions to the Department for Health & Social Care, raising the issues with CHC highlighted by the campaign.

Caring for someone with PSP or CBD can be both rewarding and incredibly challenging. As these conditions progress, family members and friends often take on increasing responsibilities, from helping with personal care and communication to managing appointments, finances and emotional wellbeing. Many carers provide round-the-clock support while balancing work, family life and their own health needs.

Ahead of the 2024 General Election, PSPA’s Show Us You Care campaign encouraged supporters to write to parliamentary candidates and share their experiences of caring for someone with PSP or CBD. Together with Carers UK, we called for stronger recognition and better support for unpaid carers across the UK.

The campaign shone a light on the emotional realities of caring for a loved one with a terminal neurological condition. Many carers experience exhaustion, isolation, financial pressures and uncertainty about the future, while witnessing the gradual loss of abilities and independence in the person they care for. Despite their vital role, carers can often feel overlooked and unsupported.

By sharing personal stories with election candidates, supporters helped demonstrate the invaluable contribution family carers make every day and why they need better practical, financial and emotional support. The campaign aimed to ensure that carers of people with PSP & CBD were seen, heard and recognised by future policymakers.

One of the biggest challenges for people affected by Progressive Supranuclear Palsy and Corticobasal Degeneration is getting an accurate diagnosis as soon as symptoms become more prominent. Unfortunately, it often takes years before they receive an accurate diagnosis. Early symptoms are often mistaken for other conditions, leading to delays in accessing specialist care, support and information.

Our Red Flags campaign aimed to improve awareness of the early warning signs of PSP & CBD among healthcare professionals who may encounter these symptoms first, including GPs, opticians and ophthalmologists. We encouraged supporters to take our Red Flags posters into local healthcare settings to help highlight the key symptoms associated with these conditions.

The campaign focused on symptoms such as unexplained falls, changes in eye movement, difficulties with balance, speech or swallowing, and other signs that can indicate PSP or CBD. Earlier recognition of these symptoms can lead to faster referrals, earlier diagnosis and quicker access to specialist support.