Impact on patient anxiety and quality of life of a training package for evaluation of dementia symptoms in primary care using test bundles – the Ensemble feasibility study
This information is provided directly by researchers, and we recognise that it isn’t always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Having symptoms of dementia, and waiting for a diagnosis, can be a very anxious time. The pressure on secondary care-based memory services is increasing. Timely diagnosis is essential for people affected by dementia to access to treatment, support, and care planning. Current diagnostic pathways are often slow and burdensome, with waiting times for memory clinics reaching up to two years.
Primary care offers a potential route to earlier diagnosis, but time and resources are constrained. This study explores whether a structured, scalable approach—using trained Health Care Assistants (HCAs) to administer cognitive test bundles—can support GPs in making timely and accurate diagnoses for patients aged 75 and over.
Understanding fall risk in real-world settings
This information is provided directly by researchers, and we recognise that it isn’t always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
Walking assessment is used by a healthcare professional (e.g., physiotherapist) to help them determine fall risk in those who may have poor mobility, such as people with Parkinson’s disease (PwPD). Currently, walking assessment to inform fall risk is done under observation in a clinical setting e.g., the physiotherapist watches the person walk a short distance. At home, PwPD complete a falls diary. However, falls diaries are very subjective and very often they are not completed. Therefore, there is limited information for physiotherapists to better aid their patient. There is a need to develop electronic-based tools to help better inform walking assessment to provide better strategies to limit risk of falling.
Modern approaches to measure walking include small electronic devices like accelerometers, the same technology often found in watches and mobile phones. However, use of an accelerometer only does not provide critical information as to where the person was walking (e.g., indoor or outdoor), which could greatly improve a physiotherapists understanding of walking and fall risk in PwPD. The aim of this project is to investigate the use of an accelerometer-based wearable (worn on the lower back) with camera-based glasses to provide more information on how a person walks in the clinic and at home. The use of camera-based glasses will help improve walking assessment and offer better clarity on fall risk in any environment/location. Specifically, the camera-based glasses will provide video data of (i) the environment and (ii) where the PwPD is looking. video imagery will be anonymised by the AI algorithms to protect participants anonymity.
Addressing Isolation, Loneliness and Mental Health Challenges
This piece of research was part of a wider project led by Community Researchers. The research looked at ten different topics related to health care that the Community Researchers felt were a priority in their communities. To view the other nine posters, please click on the links at the bottom of this page.
Changing culture not just process: Community led support in action
This report details the findings of a two-year study undertaken by a national collaboration of universities funded through the National Institute for Health and Care Research (NIHR) National Priorities Programme for Adult Social Care and Social Work. It builds on insights from previous studies about the importance of co-production, culture, leadership, and use of data in the implementation of strengths-based approaches. The study team were guided by lived experience and practitioner groups. Research included: studying CLS programme documents and materials, interviews with local leaders and practitioners, observation of local and national CLS activities, analysing activity and finance data to understand the impact of CLS Engagement with the NDTi team
Citizen Leadership: Co-Creating Integrated Care
To conduct the research, the team listened to people who have sought to influence health and care systems based on their lived experience and have heard their stories about being involved. Participants were patients, family caregivers, and community members who engaged in health and care system design in different parts of the world. Using their personal experience and that of their wider communities and networks, participants have helped to shape how professionals, organisations and indeed local and national governments have understood what is important to those in similar situations, and what person-centred and co-ordinated care will mean for them. Through hearing about their experiences, the study looks to identify what needs to change to achieve people-driven integrated care.
Enhancing mental health provision for those with terminal or life-limiting illness: Building clinical research capacity and capability across the East Midlands
Background Being diagnosed with a terminal or life-limiting illness can bring up feelings of anxiety, depression, and difficulty coping. Rates of mood disorders (such as depression) are higher in those diagnosed with a terminal illness than the general population, with 10% of suicides being linked to terminal or chronic illness. We also know that mental health difficulties can negatively impact physical health, reduce treatment adherence, and make accessing care difficult. Being from an ethnic minority background, living in poverty, remote or rural locations can impact both physical and mental health. The East Midlands is a unique and diverse region, with coastal/rural areas and high poverty rates in parts. The region has a lower life expectancy and higher rates of preventable death than the English average, meaning that future research priorities should focus on the needs of local communities. Currently, there are no local or national research priorities for addressing mental health concerns in those who are terminally ill. Aims and methods Healthcare professionals (HCPs) are key to delivering mental health support during palliative care, but often do not lead the research that informs their practice. We plan to bring together HCPs who are not currently engaged in research with researchers, patients/carers, and community organisations to form a clinical research network. This network will support HCPs to learn how to conduct research within the NHS to benefit patients and their families. The network will also guide a priority setting activity, that will survey the most important research questions, priorities, and gaps in our knowledge related to supporting mental health during terminal illness. We will identify initial priority areas through a focus group with patients and carers and through a search of the academic literature. The survey will be delivered across multiple rounds, asking participants from the network to rank how important specific topics are. The aim is to reach a consensus, where over 80% of participants agree an item is important or not. Patients and carers with lived experience of terminal illness will be an integral part of this process, ensuring that the topics are relevant to local needs. From here, we will develop a plan for a future research proposal through a network workshop, based on the top priorities identified during the priority setting activity. This project will run for 12 months and will aim to make the network sustainable thereafter. Patient and public involvement (PPI) We will form a Lived Experience Advisory Group (LEAG) to provide advice and guidance throughout the project on the experiences of patients and their carers. The LEAG will be co-chaired by a researcher and a member of the LEAG, who would like the opportunity to develop their PPI leadership skills. Training and support for the public co-lead will be provided. Dissemination and anticipated outcomes We will engage with local community organisations, patients/carers, and the community through social media posts, written and accessible summaries of the work, and through academic journal articles and conference presentations. Our expected outcomes are to: 1) Establish a clinical research network to support HCPs to become more research active, 2) Identify key research priorities specific to mental health in palliative care across the East Midlands, and 3) Develop a plan for a future research proposal based on these priorities.
Implementing professional support for the voluntary sector workforce: A multi-case action research study
Aim of the research- We want to find ways of supporting charity workers to stay in their roles. Background- The NHS and local councils fund and rely on charities to deliver services that improve people’s health and wellbeing. Examples include dementia support groups and welfare advice. These services are often aimed at vulnerable people including carers and people experiencing poverty. Charity workers report enjoying their jobs. However, they feel unsupported. This makes them leave their jobs. This disrupts service users’ care. Service users lose the relationship they had with a worker. This leaves some people feeling bereaved and they lose trust Charities report that more workers are leaving. Charities struggle to recruit replacement staff. Previous research has found that health and social care staff feel more supported if they are given training, coaching and have a good manager. Some charities struggle to deliver support to workers. This is because charities cannot afford to fund training. Workers often do not have time to access support. We need to find ways of supporting charity workers despite the challenges. Design and methods used- We will work with charities, funders and service users. We will: Undertake a review of previous research to understand what support works. We will run a workshop to discuss how the learning could help charities. Explore how charity workers are currently supported. We will talk to 45 workers, managers and service users. We will ask charity workers to complete a survey to understand what support they want. We expect 500 responses. Work with 6 charities to provide support to workers. For example, a charity starting a coaching programme. Explore the impact of the new support. We will talk to 40 people. We will use a follow-up survey to measure if workers feel more supported. Calculate the costs of different types of support for charity workers. Run three workshops with charity managers, workers, funders, policy makers and service users to discuss the findings. Design learning materials. We will share these with charities and policy makers. We will involve people with different characteristics and needs through targeted recruitment. For example, talking to charity workers with a disability. We will consider how these needs impact on support. Patient and Public Involvement- We worked with 10 charity managers, 18 charity workers and 9 service users to design the study. They had different experiences and were different ages and ethnicities. They suggested the topic because they felt that losing experienced workers was hard for service users. They gave feedback on the research design and on the application. We have charity managers, workers and service users as co-applicants. We will have a service user group and a separate charity worker group. Each group will include 6-8 people. The groups will provide advice on the study, help us understand the findings and co-design resources. Both groups will meet 7 times. They will attend the workshops. We will provide support and training. We will pay people for their time. Dissemination- We will produce learning guides and deliver training to charity managers on supporting workers. We expect that this will help to reduce the number of workers leaving their jobs. This will benefit service users because their trusted workers will not leave, providing them with better care. We will publish papers and attend conferences.