Our 2025 survey of people living with PSP & CBD highlighted the continued challenges around diagnosis. Many reported that reaching a correct diagnosis can take two years or more. Waiting times for care and support also impact people’s quality of life.
Maggie Chapman’s experience reflects both themes.
“Existing health conditions masked Chris’s initial PSP symptoms for some time. It wasn’t until Chris was experiencing backwards falls and increased anxiety around 2017 that we realised something else was going on.
“It took a good few years for Chris to receive his diagnosis of Progressive Supranuclear Palsy, maybe even four years. Investigations began at one hospital’s ENT department. Chris was then referred to Neurology, where the consultant knew something was wrong but not what it was; ‘multi-functional disorder’ was stated. Moving to another hospital and requesting a referral to the Falls Clinic around 2020, professionals there mentioned CVA and Parkinson’s and then discarded. Chris’s PSP diagnosis wasn’t confirmed until he was referred to a new Neurology Department, where brain scans picked up the distinct hummingbird shape in summer 2021.
“I had heard of PSP before Chris’s diagnosis. I’d read some articles about David Attenborough’s brother, John, who quietly battled with the disease. I was able to tick off so many symptoms and similarities with what Chris was experiencing; the diagnosis wasn’t too much of a shock, and this allowed me to focus more on the practicalities.
“I like to think I’m a resourceful and organised person, but due to the nature of PSP, caring for Chris, as he progresses, has been a steep learning curve. Trying to stay ahead of the next change, the next challenge isn’t always possible. As hard as you try to get things in place before you need them, the healthcare system isn’t always quite set up to work that way, especially in the last few years.
“Waiting times to see professionals or access equipment can scupper any plans you might have to get ahead of things. We’re currently on a three-month waiting list for an assessment for a specialist bed for Chris, one which you can move to sit the person upright to enable safe feeding and medicating; he doesn’t have the strength or mobility to prop himself up now. It also took around one-year to get an assessment for a replacement wheelchair.
“A lack of awareness among healthcare professionals is also frustrating at times. It can feel quite daunting, having to explain what is happening, what you need, and why, to people you usually would rely on to give you such answers. We have been really fortunate with the care and support we have received from our GP and the medical practice, though. The consultant said a GP may only see one case such as ours once in their working life.
“As knowledgeable as professionals can be, they don’t know what it is like to support someone with the condition each day, and often they are working to plans which assume there is a typical progression route for the condition. Which there isn’t. It was other carers who stepped in to offer advice when Chris’s swallowing became problematic. He was able to eat foods that we were told he shouldn’t eat, and couldn’t eat foods that were thought of as acceptable! The plans I’d been given suggested pureed food was the next step from minced meals. But that didn’t work for Chris. It was carers I met via PSPA’s Carers Support Group who suggested I tailor my approach to his meals. So now I chop up the minced meat, serve it with extra sauce or gravy, and that seems to be working well for now.
“In addition, some of the feeding equipment is expensive and quite varied. So, it is useful to discuss with other carers how they have found using something. Often in the PSPA Carers Support Group meetings, we have a ‘Show and Tell’ section, where we share what something is like and how effective it is!
“I knew from early on that we needed to change our garage into a bedroom and wet room for Chris, as our home was not suitable. It was Chris who would usually lead on any house repairs or development work, so I found it difficult to make such big decisions on my own. The community of carers I have found through PSPA have been vital to our experiences. Every time I face a challenge or a difficult decision, I know other carers will provide tried and tested ideas via Health Unlocked and our Support Group WhatsApp chats.”
