Long Term Neurological Conditions

DENIM: Delivering Effective Non-Invasive ventilation in Motor neuron disease using intensive remote support

Motor neuron disease (MND) is an incurable neurodegenerative disorder that causes progressive muscle weakness that can severely affect mobility, swallowing, speech, cognition and breathing. People living with motor neuron disease (plwMND) are offered non-invasive ventilation (NIV) to help them with difficulties in breathing. Used effectively, NIV can support people to live better, for longer. However, it can be challenging to use NIV at home, meaning that not everyone experiences the full benefits of the technology.

Key Aims:

This project aims to determine if intensive support from staff during the first 12 weeks of using NIV, informed by remote monitoring data, can help plwMND use their NIV for longer and more effectively at home, without the need for additional hospital visits. The clinical trial is involving 12 UK NHS Trusts and over 250 patients will be recruited.

Development of CognoMND, an automated AI tool for early detection of cognitive and behavioural changes for people living with Motor Neuron Disease (MND).

Key Aims:

This project aims to improve clinical care for people living with Motor Neuron Disease (plwMND) via the development of CognoMNDTM, an automated assessment tool for early detection of cognitive and behavioural changes. By engaging with people with lived experience for co-development of CognoMND, it is hoped that the project will produce a tool that significantly meets the needs of plwMND and their caregivers.

Inclusive Dementia Research Priorities Research Project

Key Aims:

It is known that certain ethnic minority groups are more at risk of developing dementia and that it is harder for these communities to access appropriate care and treatment. The key aims of the project were for researchers to work with a local Somali community organisation to determine priority research areas for brain health and dementia. Three workshops were conducted to help identify, discuss and develop the research priorities further.

Globally, neurological disorder is the leading cause of disability and the 2nd leading cause of death. In the UK, around 1-in-6 are 'people living with Neurological Conditions' (plwNC) with at least one neurological condition and ~600K newly diagnosed annually
Currently 1.3M UK stroke survivors, 2.2M people living with progressive neurological conditions, which include Motor Neuron Disease (MND), Multiple Sclerosis (MS) and Parkinson's Disease (PD) and almost 1M with dementia
Annual NHS costs are £4.4Bn - 45% relating to hospital and emergency admissions
Heavy burden and personal impact on their families is incalculable with 40% reporting that their mental health needs were not being met adequately, of which 60% reported anxiety and hopelessness

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Our Vision

Accelerate equitable access to HealthTech that improves condition management for plwNC and thereby their quality of life
Promote independence by alleviating key functional limitations
Empower symptom self-management
Reduce demands on health services and improve system efficiency
Support timely diagnoses and monitoring, including remote where appropriate and offered as a choice to reduce travel burden

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Our Approach

Respond to priority unmet needs across a range of LTNCs by working internationally with partners with competitive expertise and track records
In responding to unmet needs, we include those from underserved communities, such that we can develop
HealthTech that is culturally acceptable and available in multiple languages to reduce inequalities of access
We consider PPIE/EDI informed issues such as barriers to LTNC clinic access that could be improved by tele-health or digital
HeathTech solutions
We work across all the themes of the HRC to ensure that wider inter-related long-term conditions are considered to maximise inclusion and market size