This is the second of two articles based on our recent interview with Steve Ford, CEO of Parkinsons UK. This week we focus on the real issues that matter to people with Parkinson’s and what treatments and innovations might be around the corner. You can read last week’s story here, in which we concentrated on the journey that the Parkinson’s UK has undergone since Steve took the reins.
Quality care means REALLY listening
“What is disabling?” is a question Steve poses in our interview. While much research is being done around the physical symptoms of the condition, Steve states that one of the real issues is the fear of a loss of identity. “Communication issues are a real challenge for people - something that lots of people are really scared of actually, that sense of ‘if I can’t communicate then - then - how am I still me?’”
He goes on to share the story of a gentleman that had been visited by a Parkinson’s UK local advisor recently. There are “lots of agencies involved”, dealing with his many challenges -he hadn’t really left the house in 10 years. After spending some time with the advisor, he said “you are the first person who’s really listened to me.” It transpired that all he wanted was “to go to the Coast - to go see the Sea, maybe one last time.” The advisor declared that she would use every resource at her disposal to get him there. “‘I’ve heard what he’s said,’ she told me”.
“That’s what we need to be able to do” states Steve. He is at his most animated recounting this story, his beaming smile an outward sign of the pride he must feel at this encounter. “What is it that people really want?” he asks. All the - very important - medicine and treatment issues aside, “the really good quality care is what actually is really important to this person, and how do we shape the support and treatment around facilitating and enabling that?”
Another example Steve gives is from a personal encounter. He describes “the privilege of sitting in a clinic” and speaking with people with Parkinson’s. One person just wanted to get to bowls in the afternoon. He said he didn’t mind if he couldn’t move very much in the morning or the evenings - “I want to get to the Bowls club in the afternoon.” He explained that it was where his friends were and “to lose that would make his life a lot poorer”.
How should we measure and assess?
Another subject Steve is passionate about is the experience individuals have through their care and treatment - even in research trials. He talks about what is important to people in terms of relevant assessments and measures; when trials have failed, common feedback from the Community is that they aren’t actually measuring the right things. He believes - difficult as it is when there are rigorous standards to be met - that it “has to be quality of life type” measures. There can also be frustration when the results of a trial take years to be published.
Steve mentions several times how they are working to provide training to combat a lack of understanding in the medical and care fields around the reality of symptoms and living with Parkinson’s. Steve queries “how realistic it is to ask someone to travel 30 miles for a 10 minute appointment?
It doesn’t tell the medical staff anything about “what’s going on on a Thursday afternoon in real life.” He raises a lack of understanding in residential care when patients appear fine one day and incapacitated the next. The unpredictability of symptoms and the importance of getting the medication timing right can lead to people having to defend themselves: “it’s the medication!” not them being “stubborn”
How can technology help?
So what can technology offer people with Parkinsons? There is no doubt that the “real ambition” is the creation of a drug that can slow or stop the condition in its tracks. Steve acknowledges however, that there are other approaches that can help alleviate symptoms and contribute to a better quality of life and “as a charity we need to find ways of encouraging and supporting that.”
Technology could help monitor symptoms and detect tremors. Currently tremor detection in trials is a manual exercise and so very subjective. We need continual assessment over a period of time and there are teams working on this at the moment. Solutions are emerging that will help get treatment regimes right, map medication effects and show when people are ‘on’ and ‘off’.
Whilst many University teams and companies across the globe are developing apps and “wearables” like our M-Co device, they face significant hurdles including cost due to budget pressures and reservations in the promotion of such technology from clinicians for various reasons. Steve remains hopeful, however, and in his drive to find solutions for people living with Parkinson’s, his only real question is how should he and the Organisation support this progress. “Do we just allow the market to develop?” he queries, “and the really good technologies will just naturally emerge? Or is there something more that we do to bring people together?”
Ingenuity within the Parkinson’s Community
We discussed the process that researchers go through to get projects off the ground and funded. Steve reveals how Parkinson’s UK is “in general fairly agnostic” when it comes to accepting proposals. They invite the best scientists to come forward with the best ideas, which are subject to rigorous testing, including International Peer Review Panels. While the Charity is somewhat nervous of “putting all its eggs in one basket” they occasionally embark on ‘targeted programmes’.
The most inspirational innovations we’ve learnt about, however, have come from people with Parkinson’s themselves. Steve shares how one gentleman who worked repairing shoes created a pair for himself with sloped soles. The angle of the soles forced him to walk in a way that corrected his posture. Another gentleman had a genius idea to correct his constant “slumping forward”. He badgered his bemused optician to make his varifocal glasses upside down! This meant that when he needed to see at a distance, he was forced to angle himself backwards and look through the BOTTOM of his glasses (try it - sheer genius!). This again, forced his body into the posture he wanted. “I just think that’s fantastic, you know,” exclaims Steve, passionately - yet gently - banging his fists on the table in front of him, “the ingenuity, the insight the community has to solve some of these problems.” We absolutely agree.
Thank you Steve for your interview :)
Author : Victoria Duggan