Significant waiting lists, staff shortages, and shorter appointment times are all fallouts of the pandemic and years of NHS cuts, and patients often feel the hit. 

For people with Functional Neurological Disorder, a condition for neurological symptoms caused by problems with the functioning of the nervous system, the problems in the overall healthcare system are exacerbated by the very nature of the condition. 

Wait times for neurologists vary across Scotland and the UK, and can range from six months to two years and functional disorders are the second most common reason a person is referred to neurology. 

Furthermore, the patient-clinician communication gap can widen due to the complexity of the issue. Traditionally a ‘software’ rather than a ‘hardware’ problem, doctors can dismiss patients’ symptoms as they do not show up on scans despite severely impacting their lives. 

“The communication gap is probably at its greatest in FND and other functional disorders,” Professor Jon Stone, consultant Neurologist at NHS Lothian and Honorary Professor at the University of Edinburgh said. 

Prof. Stone created Neurosymptoms FND Guide in 2009, a website dedicated to helping patients with FND understand their symptoms. Realising he needed an update, he partnered with CogniHealth, a company which creates digital solutions for patients and carers with neurological disorders. 

The company previously developed an app for carers looking after someone with dementia, and is using their expertise for other medical conditions. 

“What we got when we were developing CogniHealth was “oh I wish we had this for ‘X’ condition,” Pooja Jain, founder and CEO of CogniHealth said. 

CongiHealth worked closely with Prof. Stone to update the FND Guide website and develop a Formulation Tool that patients can use to explain and track their symptoms.

The project received funding from the Scottish Government, NHS Lothian Charities, and the RS McDonald Seedcorn Fund.

“These funders, they were public bodies, driving this sort of new digital era in health and social care as well” Jain said. 

The inspiration for the user-friendly tool came from Prof Stone’s experience with patients – “he saw patients coming in with either their notes – three or four pages – or just kind of having an idea of what they’ve been going through, but there was not a structured way for them to better understand,” Jain said. 

The formulation tool allows patients to go through their symptoms, their potential causes and triggers, any underlying conditions, and how their diagnosis has affected their quality of life in an easy-to-use and structured manner. 

“It just means that the conversation during the clinic is much more fruitful and in the right direction and both the patient and the doctor are on the same page,” Jain said. 

The Formulation Tool takes minutes to use and creates a report that patients can take with them to the clinic. It outlines their symptoms, and provides users with different treatment options – patients can add as little or as much detail as they want. 

“It’s the first time a tool like this has come into the market that guides the patient through what they are experiencing in a simple manner,” Jain said. 

“It helps structure different parts of their condition in a way that can help them and the healthcare professional better understand what is happening now but also over time.”

Additionally, the tool enables users to formally consider their diagnosis and symptoms, helps to eliminate any treatment options they are not interested in, and paves the way for patient advocacy at the start of the appointment.

“For example, if they don’t think it’s the right diagnosis in their heart, or they don’t think that one of the treatments like medications is right for them, then having that kind of document in this tool and taking it to the clinician means that the clinician already knows their mindset,” Jain said. 

“I think it’s a great way for everyone to better understand where the patient is and to personalise their plan better,” she continued. 

Designed with patients at the forefront of the process, the tool isn’t just useful for clinicians, Jain says, but for the patient’s own journey with FND.

“I think the education that they get through answering the questions is the first kind of treatment in itself,” Jain explained, “because the more you understand your condition and what’s happening the better mindset and the better position you are in to take on the next steps in treatment.”

The creation of the tool was deeply collaborative – Jain sat in on appointments with Prof. Stone to get to the route of the appointment. Her experience working as a carer and her degrees in neuroscience has allowed her to understand researchers she collaborates with while keeping patient needs at the heart of the solution. 

Without this collaboration, Jain says that patient needs can get unaddressed, and technology misses the mark. 

“Sometimes we don’t truly understand the challenges of the person,” she said, “The basic logic kind of breaks down, even though the intention behind such innovation can be right, it sometimes goes back to not involving people and testing it.”

Personalisation was therefore key to this formulation tool, and CogniHealth’s process is research heavy. 

“Keeping the patient at the heart of what we do and the fact that it’s evidence based and research lead would be the two most important things for me in how we approach any project we do,” Jain said. 

While the formulation tool is currently a beta version, Jain sees potential for the technology. 

The tool could be used for wider applications – “things that are complex, things that are difficult to diagnose, where the waiting times are longer, it gives an empowerment for patients to have more control over what they’re going through,” Jain said.

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The Neurosymptoms website has been translated into seven languages, and in the first two days of its launch, 2000 people used the Formulation tool. 

The tool can be used with any healthcare systems, with or without clinicians, to help patients throughout their diagnosis. 

Jain recognised the impacts the current healthcare crisis is having on patients, and hopes the Formulation tool, and tech like it will help patients.

“Anything you can do to help them during those waiting periods, to help them when they go into the clinicians room, and also take away to see overtime what they’re doing,” is a major benefit to overall patient care. 

CogniHealth is already working on improving the Formulation Tool, using data for research into FND and using feedback to better understand how to make the technology more effective for patient care. 

Though at the early stages, Cognihealth is working on a project to bring technical solutions to help mental health issues among young children. They are also working on FND Tics, devising an educational platform and formulation tool for a common symptom associated with FND. 

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