NHS Greater Glasgow and Clyde has developed a digital tool to help patients and their families manage a condition that was once so difficult to spot it was dismissed as a figment of a patient’s imagination.
Dissociative Seizures are a little known but potentially serious and disabling condition where patients experience an episode where they lose awareness or the ability to interact with their surroundings. The episodes can look like a faint or an epileptic seizure, but are not linked to the more common condition.
The presentation can often result in a diagnosis of epilepsy, and the possibility of an inappropriate course of treatment, but even once clinicians get the diagnosis right, offering the appropriate help to patients and families, so they can live well with the condition, has been a struggle.
To help tackle this conundrum, staff from NHSGGC submitted a bid to develop an app that would support patients and their loved ones, and following approval they worked with the Scottish Government to create a digital support system for patients, and their loved ones.
And in the three months since the app went live more than 300 people have accessed it.
Early feedback has been positive, with clinicians, patients and their families finding the support within the app very valuable.
Dr Sharon Mulhern, Consultant Clinical Psychologist at NHSGGC, and Dr Saif Razvi, Consultant Neurologist, were instrumental in developing the app.
Dr Razvi said: “Historically there was real guilt and shame associated with this condition. There were often no conversations in the family or with friends about the diagnosis often due to shame and feelings of isolation. There was a real lack of information available to patients – and imagine being accused of putting it on, that you’re not believed.
“It takes detailed investigations by a neurologist to diagnose Dissociative Seizures. Without it, people might face a lifetime of worry and confusion about what’s wrong with them, but getting diagnosed means at least some certainty, and the chance of needing medical services reduces, as do other possible harms.”
And it’s at this point that the new app comes into its own.
Dr Mulhern said: “It’s a central place people can go. They can find out what’s involved with the condition and how to manage it.
“The app takes people through the diagnosis, gives information on why medication they’ve been prescribing might not help, and how to live with the condition.
“There are different templates to help manage the condition, and the app provides strategies that fit in with the person’s life.
“In some cases, the app is so useful that once they’ve been through it, it’s possible they won’t need any additional support from medical services. While the option is always there to engage with the services we provide, that becomes a choice they can engage with only if they feel they need to.”
The app is available free on the NHS Right Decisions service – home to a range of digital services developed by NHSGGC and other health providers throughout Scotland.
“And it’s not just for patients,” Dr Mulhern said. “The app was developed to help carers and family members too, so it’s really encouraging that early feedback has been so positive.”
Susan Groom, Director of Regional Services at NHS Greater Glasgow and Clyde, said: “NHSGGC, working with our partners in Government and across the health sector, is committed to developing novel ways to support our patients and they loved ones.
“Dissociative Seizures are a particularly complex condition and this app is already making a difference to people’s lives. I would like to thank all staff involved in its development, and I will look forward to seeing its benefits spread even wider in the coming year.”
:: To install the app on your device, go to your Play Store or App Store and search ‘Right Decisions’. Once installed, open the app and search ‘Dissociative Seizures’.
:: To access through your browser, go to Dissociative Seizures | Right Decisions
:: For more about Dissociative Seizures, go to: Epilepsy Scotland
