Neurological Disorders

Digitising a Home-Based Care pathway for people with Parkinson's (Video)

Parkinson’s disease is the world’s fastest-growing neurological condition. In the UK, there are an estimated 153,000 people already living with Parkinson’s, a number that is expected to increase to 172,000 by 2030. Motor and non-motor symptoms associated with Parkinson’s disease can have a significant impact on patients’ and carers’ quality of life. Despite having potentially numerous and varying symptoms, patients with Parkinson’s are only typically seen once or twice a year. 

Dr Camille Carroll, Professor of Clinical Neuroscience at Newcastle University and an Honorary Consultant Neurologist led the co-design of a unique Home Based Care pathway with people with Parkinson’s, Parkinson’s clinicians and nurse specialists. Launched in 2019 in the University Hospitals Plymouth NHS Trust, it has already demonstrated benefits for patients and clinicians but it requires a large amount of manual ‘pen and paper’ data collection and input of results. Funding from the NHS England Digital Health Partnership Award is enabling us to digitise this pathway. The new system will enable online data collection, seamless transfer and integration of data via the cloud, and digital records that can be accessed by patients and clinicians to monitor symptoms and adjust care accordingly.

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Developing and evaluating an app to support self-management of non-motor symptoms in Parkinson's (Video)

Although Parkinson’s disease is commonly associated with motor symptoms in public perception, non-motor symptoms (such as pain, digestive difficulties, eye problems, and more) are often the earliest signs of Parkinson’s and can have a more negative impact than motor symptoms on patients’ quality of life. Despite this, they are often overlooked by patients and clinicians, meaning that patients are not necessarily receiving the right support to manage them. 

Dr Carroll led the co-design and development of a novel mobile app to help patients identify, monitor, and self-manage their non-motor symptoms and together we won funding from Parkinson’s UK to refine and evaluate the app, called NMS Assist. NMS Assist enables patients and carers to track their symptoms and well-being, receive targeted self-management advice, and share data with healthcare teams, enabling earlier and more targeted clinical interventions. After development is complete, we will be leading a mixed-methods study to establish evidence of the impact of the system on patient confidence, knowledge, and skills for self-management of NMS, symptom burden, and quality of life of people with Parkinson’s and their care partners. It will also evaluate the usability, acceptability, and potential for adoption of the system.

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Implementing subcutaneous EEG monitoring for people with intellectual disability and epilepsy

Many people with intellectual disabilities (PwID) have seizures. Electroencephalography (EEG), which measures the brain’s electrical activity, is a key method of diagnosing and assessing seizures. This is generally conducted in a hospital, which is time restricted and can be difficult for PwID. UNEEG medical has developed a very small device (‘SubQ’) that can be put under the skin on a person’s head to track their brain activity without staying in the hospital. It has been implanted for 15 months successfully in people with seizures but not in PwID. 

Funded by Phase 1 of a SBRI Healthcare competition around Autism and Learning Disabilities, we conducted co-production workshops with PwID and family members and carers of PwID to understand how this technology could be used to improve our understanding of epilepsy and seizures in this population, which patients it might be helpful for, and how to explain the technology to and consent PwID. We also won Phase 2 funding from SBRI Healthcare to conduct a pilot study to test how well the device can detect seizures in people with moderate to profound ID and to assess its acceptability, safety, and impact on patients’ and carers’ quality of life, behaviour, and clinical care. This is a particular challenge for PwID and epilepsy, who may not be able to communicate about their experiences, and can result in the prescription of inappropriate medications. 

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