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c07181de-349f-421b-8259-3fdae15d93ab COMPLETED: Development of a structured deprescribing intervention for people with dementia or mild cognitive impairment in primary care (STOP-DEM) Project partners Memory Assessment and Research Centre ( Hampshire and Isle of Wight NHS Foundation Trust was a Participant Identification Centre (PIC) Portsmouth Older Person’s Mental Health (OPMH) Service (Hampshire and Isle of Wight NHS Foundation Trust) was a Participant Identification Centre (PIC) Full team Dr Kinda Ibrahim (CI), Dr Nicola Andrews, Cindy Brooks, Dr Jay Amin, Prof Sue Latter, Prof Simon Fraser (University of Southampton), Dr Rosemary Lim (University of Reading), Dr Michele Board (Bournemouth University) Assisted with the systematic review: Dr Eloise Radcliffe, Paula Sands (University of Southampton), Dr Kirsty Aplin, Dr Beth McCausland (NHS OPMH), Dr Ellen van Leeuwen (Ghent University) PPI: members of Friends of MARC group and members of Dementia Support – Hampshire and Isle of Wight’s Eastleigh support group Started: October 2022 Ended : September 2024 Jump to publications The team produced a video about their work: Team video about experiences of people living with dementia and their family carers Lay Summary Most people with dementia or mild cognitive impairment (MCI) have multiple chronic conditions and take five or more regular medications (polypharmacy). Polypharmacy in people with dementia/MCI can lead to increased risk of drug interactions, side effects such as falls and cognitive decline, and sometimes hospitalisation and death. Some types of medications (such as strong anticholinergic drugs) can increase risk of developing dementia and cognitive impairment. It is estimated that over £400 million is spent annually in the UK in hospital admissions related to harm from medications. Identifying harmful medications and stopping or switching to safer alternative (deprescribing) has the potential to reduce the risk of developing dementia and improve outcomes for people already living with dementia. However, to date, deprescribing interventions for people with dementia/MCI have focused on specific drug classes (e.g., anti-psychotics) or have been limited to inpatient or nursing home setting. In the UK, it is estimated that 61% of people with dementia live at home where medication is a part of daily living. Most studies also focused on medication-related outcomes (e.g. discontinuation of high-risk medications) rather than patient-centred outcomes, and did not involve the person with dementia and their carer. Therefor it is essential to understand how primary care staff could involve people with dementia/MCI and their caregivers in shared-decision making about stopping medications safely. Summary of findings We reviewed existing evidence on interventions to reduce or stop (deprescribe) medications for people with dementia or mild cognitive impairment (MCI). We found that most studies focused on medications that affect behaviour, mood, or perceptions and people in residential care. Many interventions reduced numbers of medications and improved appropriateness of medications. However, there was limited evidence on outcomes relating to safety and outcomes such as falls, quality of life and cognition. There was limited involvement of patients and informal carers in the interventions. We interviewed people with dementia or MCI, informal carers, primary care professionals and professionals working in memory clinics. We found that patients, carers and healthcare staff need to be involved in the deprescribing process. This process needs to consider patient cognitive abilities and independence. It also needs to consider carer experiences. Flexible medication management processes are needed to support successful deprescribing. These should be adapted to each person. These should involve joint working across the healthcare system. Deprescribing discussions need to be held in-person and in a safe setting. There needs to be enough time. Discussions should be led by a professional who knows the patient and can answer their questions. The possible impact of deprescribing decisions should be carefully considered. This includes impact on how medication is managed day-to-day and allso, carer burden. See the summary report Summary report for participants .pdf Download PDF • 559KB See the Key Practical Implications What we did with the new knowledge Sharing with frontline health and care professionals We shared our findings at a Hampshire and Isle of Wight Integrated Care Board (ICB) Medicines Optimisation webinar, engaging with an audience of 110 professionals, mostly pharmacists. We were invited to present the work at the RCGP Wessex Faculty Conference in March 2025 with around 100 attendees We shared our findings at a Wessex Older People’s Mental Health Academic meeting involving more than 50 professionals working in this area, primarily doctors. Meeting with the national lead for NHS prescribing to present the study. Academic Publications We have published two papers, one reporting the systematic review in Drugs and Aging and the other reporting the qualitative study in Dementia. The Importance of a Relationship-Centred Approach to Deprescribing for People with Dementia or Mild Cognitive Impairment in Primary Care: A Qualitative Study (November 20, 2025) Medicine Optimisation and Deprescribing Intervention Outcomes for Older People with Dementia or Mild Cognitive Impairment: A Systematic Review (March 2025) Oral and poster presentations at the European Geriatric Medicine Society Conference in Reykjavik, 24-26 September 2025 Presentation about using “photo elicitation” as a creative qualitative methodology at the ARC Qualitative Network Sharing with policy makers We have presented the study findings to MPs and representatives from royal colleges (RCGP, RPS, BGS) in a policy roundtable discussions in Westminster Nov 2025 We have produced a policy brief and shared it with relevant parties Nov 2025 We have presented the findings in an ARC Wessex stakeholder event Feb 2026 Sharing with the wider community including patient and public Summary findings and infographics from the qualitative study have been shared on social media, with a post on the ARC Twitter/X, LinkedIn and Facebook pages, and the ARC website. University of Southampton website link - Deprescribing for Dementia MSN News - Why good healthcare can mean stopping medications Daily Expresss coverage - Link Radio coverage - Greatest Hits Radio Video featuring members of our PPI group and other members of the dementia support group sharing the findings of the qualitative study. The video is being used in undergraduate and postgraduate teaching in Faculty of Medicine at the University of Southampton. Where Next? Grants : Dr Kinda Ibrahim (University of Southampton) and Dr Rosemary Lim (University of Reading) submitted Research for Patient Benefit grant application to develop and test and deprescribing intervention for people with dementia or mild cognitive impairment in primary care. Academic conferences: The Society of Academic Primary Care conference attended mainly by GPs and academics.

c585330f-e35f-4618-bc81-287d81f85239 The PD Life Study: Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers Principal Investigator: Professor Helen Roberts Research team: Dr Qian Yue Tan (Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Professor Helen Roberts (Professor of Medicine for Older People, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Kinda Ibrahim (Senior Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Simon Fraser (Associate Professor of Public Health. School of Primary Care and Population Sciences, Faculty of Medicine, Southampton General Hospital), Dr Khaled Amar (Consultant Geriatrician and Honorary Senior Lecturer at Bournemouth University, Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust) Start: October 2020 Ends: October 2022 Project Partners: University of Southampton, Bournemouth University, University Hospital Southampton NHS Foundation Trust, Royal Bournemouth and Christchurch Hospitals NHS Foundation . Lay Summary People with Parkinson’s (PwP) have many symptoms including tremor, stiffness, slow movements, constipation, urinary incontinence and mental health issues. They are often older and have other long-term health conditions. PwP need to do many things to look after their health including manage multiple medications, attend healthcare appointments and lifestyle changes such as improving diet and exercise. The effort of looking after their health and its impact on them is termed ‘treatment burden’. Some PwP need help from their family or friends (caregiver) to complete these tasks. Caregivers may also experience treatment burden themselves when caring for someone with Parkinson’s. People’s ability to manage treatment burden is termed ‘capacity’ and is influenced by physical, mental, social and economic factors. People are overburdened when the workload of looking after their health exceeds their capacity. This can lead to poor adherence with treatment, poor quality of life and worse health outcomes. Aim We aim to understand the factors that influence treatment burden and capacity in PwP and their caregivers. Methods Interviews with 15 PwP and 15 caregivers will identify factors that influence treatment burden and capacity. These factors will be explored further in a national survey for PwP and caregivers with support from Parkinson’s UK. We will then form focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policymakers and managers through Parkinson’s Excellence Networks to discuss the findings and prioritise recommendations for change. This study will enable to us develop recommendations of ways to reduce treatment burden and improve future experiences of PwP and their caregivers. This research is also supported by a legacy in memory of Carolyn and Tore-Jan Myhre

a2f4485f-e939-4775-b10a-095900320a55 FinCH Implementation study: Falls prevention in care homes led by NIHR ARC East Midlands working with NIHR ARC North East North Cumbria, NIHR ARC West Midlands and NIHR ARC South London. Project: Falls in Care Homes (FinCH Imp2 study) Principle Investigator: Professor Pip Logan Team members: Dr Jane Horne , Dr Fran Allen, Maureen Godfrey , Professor Adam Gordon , Professor John Gladman , Dr Katie Robinson , Dr Paul Leighton , Dr Janet Darby , Michael Fletcher, Professor Gillian Manthorpe , Professor Barbara Hanratty , Professor Dan Lasserson , Professor Elizabeth Orton . Partners: Nottingham University Hospitals (NHS) Trust; Leicestershire County Council (Local Government); University of Newcastle, Kings College London; NHS Bromley CCG; Northumbria-Healthcare NHS Trust. Research sites: East Midlands , North East (North Cumbria), West Midlands and South London. Starts: 1/10/2021 Ends: 30/9/2023 Lay Summary People who live in care homes are at great risk of falling. Falls are common, harmful, costly, and difficult to prevent. The Guide to Action for Falls Prevention Care Homes (GtACH) programme trains and supports care home staff to identify the reasons why residents fall and then guides them to complete actions to reduce falls. In a large multicentre randomised controlled trial called the FinCH trial (1), the GtACH programme was cost-effective and reduced falls by 43%. We now need to research how to deliver the GtACH programme in ‘real life’ outside a research trial. We will work with three regions – East Midlands, South London and the North-East - to develop and research ideas about taking up the GtACH training programme which can be used nationwide. Using an approach to talking to people in care homes called Normalisation Process Theory (NPT) we will consider the work that people do in managing falls to assess whether GtACH becomes routine practice. NPT will help us to think about those things which help and those which hinder the adoption of GtACH. We have three work packages: WP1. Quality Improvement Collaboratives (QIC) will bring care home and healthcare staff together to develop and research ways to implement the GtACH. WP2. The QIC site teams will implement GtACH in 25 care homes per region (60 in total). Data from all homes and residents (about 2000 residents) will tell us the extent to which GtACH has been taken up in the homes. WP3. We will develop ‘toolkits’ of materials for care homes; containing the GtACH, a ‘return on investment’ calculator, the implementation package, and a ‘how to’ guide for establishing Communities of Practice to deliver and sustain the GtACH across regions. This study has been developed in collaboration with care home managers, care home staff, NHS clinicians and our active Patient, Public, Involvement (PPI) group who are co applicants. Going forward we have identified new PPI partners from Ashington and Bromley. We will talk by videoconferencing if needed. The study will be completed by July 2023 and we will disseminate our findings on the ARC-EM website, producing a short trailer video for YouTube, and through articles in journals and MyHomeLife Magazine. We will link our website on the national forums of the National Care Forum, Skills for Care, and Care England, Age UK, and the Alzheimer’s Society, and hold webinars for funders and managers Method Using monthly stakeholder meetings, consensus groups, interviews and literature searching we re-designed the GtACH into a suite of resources that care homes were happy to use and renamed it, on their request, to the Action Falls programme. Using an implementation theory called Normalisation Programme Theory we designed a research study to test how the Action Falls programme worked in 60 real world care homes. Care homes are being recruited across four ARC locations. All care home staff included in the 60 homes are being invited to complete the Action Falls training and complete a questionnaire (called the NoMAD) to assess how ready they are to use the programme. Interviews with care home staff and the trainers are being completed to get a first-hand view of how well the Action Falls is getting embedded into routine care. Care home staff are coming together in supportive collaborations, called Action falls Collaborations (AFC) to share knowledge, with researchers collecting data at these events. Results Ethical approval for the study has been granted by HRA East Midlands and Derby Research Ethics Committee Ref: 22\EM\0035. The study is adopted by the NIHR portfolio and the NIHR Clinical Research Network are helping to deliver the study in all locations, which are listed below in brackets. 36 care homes (60%) have been recruited, 13 in ARC North East (NE), 9 ARC London South (SE), 14 ARC East Midlands (EM). ARC West Midlands (WM) will start recruitment soon. In the ARC EM location we have four separate NHS Trusts/ Local authority areas involved. 7 NHS/ Local Authority/HEI Falls Leads have been trained in ARC’s NE, LS and EM and have begun training of the care home staff across the locations. One AFC has taken place in NE with the East Midlands AFC and South London due to take place later this month. The NoMAD questionnaires have been delivered to care homes. No interviews have yet been completed as these are due to start in November. In addition to the four locations the team have interacted with 83 individual care homes and 47 stakeholder groups sending them the Action Falls resources and talking over how they might be used, but no training has been offered. The images below show the spread of these enquiries Conclusion The study is progressing well, and care homes are very keen to take part and recruitment for the study is currently at 60%. The sites are set up and staff are in posts. We are approximately three months behind target on the activities due to care homes being reluctant to engage early in 2022 due to COVID. We consider that we may need a no cost 6-month extension to complete all the activities and to also get the Action Falls programme ready for wider spread. All our study meetings are well attended, and we have good participation from our PPI members with information being communicated from out Study Steering Group to the Stakeholders and vice versa sharing knowledge and experience. The study has gathered a lot of interest from outside of the study areas, from care homes and a range of other stakeholders. The research team have been sending out study materials and meeting with these groups over MS Teams meetings sharing resources and information about the study.A PhD student will be working with the care homes outside of our study locations from October 2022.

55265102-c760-4322-93ed-ed8448f1546f COMPLETED: Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Start Date 02/10/21 End Date 30/09/23 Researchers: Lead - Professors Mary Barker and Maria Stokes Joint Lead - Professor Suzanne McDonough Co-Applicants - Professor Maria Stokes, Dr Paul Clarkson, Dr Chloe Grimmett, Dr Euan Sadler, Dr Nisreen Alwan, Dr Aoife Stephenson, Dr Katherine Bradbury, Dr James Faulkner, Mr Paul Muckelt, Dr Dorit Kunkel, Mrs Luisa Holt amd Dr James Gavin Summary Being active is important to prevent and help manage long-term conditions (LTC). Previous research shows that being active can help people to do the things that they want to do for longer, reduce pain and improve quality of life. There are many community and NHS programmes that help people with a LTC to start being active, however, these programmes only last for a short period of time. Staying active in the longer-term is more difficult and there is often a decrease in activity over time following the completion of a programme or service. Previous research has shown that programmes or interventions that help people to start being active may not necessarily have the right components to help people to stay active. This project will plan and develop a new intervention that will support people with one or more LTCs to stay active, after taking part in an NHS and/or third sector ERSsphysical activity referral scheme (PARS). Our current research explores factors that help people with LTCs to stay active to allow these to be integrated into plans for the new intervention. The intervention will be non-digital to ensure that it is available to as many people as possible, regardless of access to the internet or a digital device. We know from previous work that it is important that any new intervention fits in with healthcare systems and how people manage their condition. We are therefore currently working with people with LTCs and health and social care professionals to understand how such an intervention could be delivered in practice. In this project we will use previously gathered information to plan the new service. We will recruit people with LTCs from ERSs PARS to take part in interviews to understand their needs and expectations for the intervention. We will also undertake interviews with health and social care professionals and ERSPARS practitioners to develop the intervention’s content. This will allow us to develop the prototype of the intervention and then ask people with LTCs who have taken part in a programme to pilot it and provide feedback through interviews. Once developed, we will plan a larger study to test the intervention’s potential with groups of people who have come to the end of an ERS PARS in the NHS and/or the third sector. This study will help us to gain feedback from people with LTCs using the intervention in real life settings to make further changes. It will also help us to understand whether the approaches to the research, such as how to recruit people to take part, are successful. This information will be used to improve the intervention and to support a larger trial to assess the effectiveness and cost-effectiveness of the intervention. What did we find out? This research included: • Phase 1: We interviewed 15 people living with long-term health conditions (LTCs) and nine NHS healthcare professionals to find out their experiences of being involved in an exercise referral scheme. This included what support they would want in future, as a participant (i.e., people with LTCs) and provider (i.e., healthcare professionals). • Phase 2: Follow-up workshops with LTC patients and multi-sectoral professionals to begin designing a pathway to support physical activity maintenance for people living with LTCs. Professionals shared their experiences from healthcare, leisure and community and voluntary sectors. This research has created a better understanding of the ways in which we might best support people with LTCs to stay physically active, and improve their health and wellbeing following an exercise referral scheme. Two areas of improvement were identified: 1) Better partnership working between people with LTCs, health and social care, leisure and voluntary sectors within Wessex 2) Ensuring people with LTCs have appropriate support with self-management of their lifelong physical activity levels What difference can this new knowledge make? • Better understanding of the factors preventing and enabling participation in exercise referral schemes across Wessex, can help us identify how structured exercise can benefit people with LTCs long-term, especially by highlighting the benefits and future support needs in physical activity. • It gave us understanding of people’s experiences of undertaking a physical activity referral scheme to help manage their LTC(s). This was supported by health professional’s views, having referred, delivered and/or commissioned an activity scheme • In future, this knowledge can inform the development of an integrated care pathway interlinking healthcare, social and community services to support people with LTCs to maintain their health and physical activity long-term, from a view to change physical activity behaviours. What did we do with our new Knowledge • We presented the results at the Health Enhancing Physical Activity (HEPA) Europe 2024 Conference in Dublin (August 2024) • We submitted a research paper for journal publication • Dr James Gavin ran a series of ‘Active Living’ community cafés across Southampton to share the research with the public living with LTCs and their carers. • This has led to additional grant funding and partnerships with Energise Me, Saints Foundation, Communicare, and Southampton City Council, to begin co-designing a multi-sectoral pathway within the city for the wider LTC population, not just those having undertaken an exercise referral scheme. • On January 8th 2025, we will run workshops with professional stakeholders including the HIOW Integrated Care Board, to find agreement on a ‘prototype’ pathway. Where next? •We have submitted the findings to the journal, Int J Behav Nutr Phys Activ December 2024. •Move Consulting Ltd. are supporting us with our professional stakeholder workshops (Jan 2025). •The co-lead, James Gavin, has secured £14,900 Wessex Health Partners funding to continue the community cafes and develop a pathway plan. •We will build upon our community-based partnerships with Saints Foundation, Communicare, Thornhill Baptist Church, and Energise Me as the HIOW Living Well Partnership. •Follow-on funding will be sought from the NIHR Research for Patient Benefit programme (tiers 2/3) in Spring 2025. Testimonials for Active Living Cafes "it's really good that you don't want to reinvent the wheel. My slight critique of the community cafes that have been set up is that you don't have to reinvent them .” “There are already community groups doing very similar things around…I know it's been brilliant that you have been partnering with people like Thornhill Baptist Church. They do wonderful things, some wonderful community events… My recommendation is to join and work with them , and that's what you're doing.” “It's a better strategy than trying to set up something new and try and hope that people come to it with a long-term condition. I think it's much better to go to people rather than expect people to come to you ."

Research Fellow < Back Francesca Zecchinato Research Fellow Workforce & Health Systems Francesca Zecchinato is a recently appointed Research Fellow within the NIHR ARC Wessex Mental Health Hub at the University of Southampton. In her current role, she is working on a mixed-methods project to identify knowledge gaps among paramedics in managing patients presenting mental health conditions. This work aims to enhance the quality of mental health care provided to patients, improve patient experiences, and offer better support for paramedics. Francesca holds a BSc in Cognitive Psychology and Psychobiology (cum laude) and a MSc in Clinical Psychology (cum laude) from the University of Padova (Italy). She has completed her PhD at the Centre for Innovation in Mental Health, School of Psychology, University of Southampton, funded by the ESRC South Coast DTP and focused on the risk posed by parental anxiety to their children and on strategies to promote the mental health of children with anxious parents. Building on her previous research exploring the needs of parents with mental illness and how services can support their children’s mental health, Francesca’s work continues to focus on understanding the needs of individuals experiencing mental health difficulties and identifying evidence-based strategies to improve care delivery. Francesca uses both quantitative and qualitative methods in her research and poses great value in the involvement of experts by experience (via Patient and Public Involvement and Engagement) throughout the research process. Previous Next

54d3d6a4-2f97-4fa8-8c83-e41613f3b35d COMPLETED: Co-POWeR - Consortium on Practices of Wellbeing and Resilience in BAME Families and Communities Principal Investigator: Professor Iyiola Solanke, University of Leeds Team: Professor Maria Stokes, School of Health Sciences, University of Southampton; Professor Sabu Padmadas, School of Economic, Social & Political Sciences, University of Southampton; Professor Monica Lakhanpaul, Institute of Child Health, University College London; Professor Claudia Bernard, Professor of Social Work. Department Social, Therapeutic and Community Studies, Goldsmiths College; Professor Shirin Rai, Politics and International Studies, University of Warwick; Professor Raminder Kaur, School of Global Studies, University of Sussex; Professor Gargi Bhattacharyya, Law and Social Sciences, University of East London; Professor Florence Ayisi, Faculty of Creative Industries, University of South Wales; Professor Anna Gupta, Department of Social Work, Royal Holloway, University of London. Duration: 18 months Summary Two viruses - COVID-19 and discrimination - are currently killing in the UK (Solanke 2020), especially within BAMEFC who are hardest hit. Survivors face ongoing damage to wellbeing and resilience, in terms of physical and mental health as well as social, cultural and economic (non-medical) consequences. Psychosocial (ADCS 2020; The Children's Society 2020)/ physical trauma of those diseased and deceased, disproportionate job-loss (Hu 2020) multigenerational housing, disrupted care chains (Rai 2016) lack of access to culture, education and exercise, poor nutrition, 'over-policing' (BigBrotherWatch 2020) hit BAMEFC severely. Local 'lockdowns' illustrate how easily BAMEFC become subject to stigmatization and discrimination through 'mis-infodemics' (IOM 2020). The impact of these viruses cause long-term poor outcomes. While systemic deficiencies have stimulated BAMEFC agency, producing solidarity under emergency, BAMEFC vulnerability remains, requiring official support. The issues are complex thus we focus on the interlinked and 'intersectional nature of forms of exclusion and disadvantage', operationalised through the idea of a 'cycle of wellbeing and resilience' (CWAR) which recognises how COVID-19 places significant stress upon BAMEFC structures and the impact of COVID-19 and discrimination on different BAMEFC cohorts across the UK, in whose lives existing health inequalities are compounded by a myriad of structural inequalities. Given the prevalence of multi-generational households, BAMEFC are likely to experience these as a complex of jostling over-lapping stressors: over-policed unemployed young adults are more likely to live with keyworkers using public transport to attend jobs in the front line, serving elders as formal/informal carers, neglecting their health thus exacerbating co-morbidities and struggling to feed children who are unable to attend school, resulting in nutritional and digital deprivation. Historical research shows race/class dimensions to national emergencies (e.g. Hurricane Katrina) but most research focuses on the COVID-19 experience of white families/communities. Co-POWeR recommendations will emerge from culturally and racially sensitive social science research on wellbeing and resilience providing context as an essential strand for the success of biomedical and policy interventions (e.g. vaccines, mass testing). We will enhance official decision making through strengthening cultural competence in ongoing responses to COVID-19 thereby maximizing success of national strategy. Evidenced recommendations will enable official mitigation of disproportionate damage to wellbeing and resilience in BAMEFC. Empowerment is a core consortium value. Supporting UKRI goals for an inclusive research culture, we promote co-design and co-production to create a multi-disciplinary BAME research community spanning multi-cultural UK to inform policy. CO-POWeR investigates the synergistic effect on different age groups of challenges including policing, child welfare, caring and physical activity and nutrition. WP1 Emergency Powers investigates these vague powers to understand their impact on practices of wellbeing and resilience across BAMEFC. WP2 Children, Young People and their Families investigates implications for children/young people in BAMEFC who experience COVID-19 negatively due to disproportionate socio-economic and psychosocial impacts on their families and communities. WP3 Care, Caring and Carers investigates the interaction of care, caring and carers within BAMEFC to identify how to increase the wellbeing and resilience of older people, and paid and unpaid carers. WP4 Physical Activity and Nutrition investigates improving resilience and wellbeing by tackling vulnerability to underlying health conditions in BAMEFC. WP5 Empowering BAMEFC through Positive Narratives channels research from WP1-4 to coproduce fiction and non-fiction materials tackling the vulnerability of BAMEFC to 'misinfodemics'.

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d213d93c-85f6-44bc-bd30-219d08d1075e COMPLETED: Material Citizenship Framework Project Principal Investigator : Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton) Co-investigator : Dr Kellyn Lee (Visiting Fellow, School of Health Sciences, University of Southampton) Researchers: Dr Jane Frankland, Leah Fullegar Collaborator: Zoe McCallum (Chief Operating Officer, Brendoncare) Started : 1 February 2020 Completed: 30 November 2022 Project partners: Brendoncare Foundation. Co-funded by University of Southampton ESRC Impact Acceleration Account, Alzheimer’s Society, The Brendoncare Foundation Concept Material Citizenship, a new approach to dementia care, uses objects used to carry out tasks (such as a mobile phone or curling tongs) as a mechanism for improving the care experience for care home staff and people living with dementia in care homes. It does so by: Encouraging care home staff to include personal possessions in care plans Support use of personal possessions to maintain routines and rituals Enable people living with dementia to carry out everyday tasks, supporting them to the live the life they want to live Impacts Material Citizenship training was delivered to four care homes, part of two care organisations in the UK. Adopting a Material Citizenship approach has had a positive effect on many of the people who live, work and visit these care homes. According to one care home manager, taking a Material Citizenship approach has transformed how they provide care. They have seen an improvement in the wellbeing of residents and increased confidence in staff who attended the training. Care home staff are now supporting people living with dementia to engage in meaningful activities such as delivering newspapers, baking bread and polishing their own rooms – with the polish they like. It has also had a more fundamental impact on the care practices of a care home. In one care home the manager gave an example of how it has changed the culture in the care home. Prior to introducing Material Citizenship catering staff worked certain times of the day and food was restricted to set meal times. This has changed and catering staff are now available to support residents in meal choices and meal times that suit them. It was also reported that prior to Material Citizenship, time restrictions of when people should leave the care home and return to the care home were in place. Residents no longer need to be back at certain times, they have more freedom to come and go as they wish, something noted by an external healthcare professional as being wonderful. Material Citizenship has enabled care home staff to grow in confidence. Prior to attending training care home staff were observed to be frequently deferential when interacting with visiting healthcare professionals. Now care home staff are more willing to engage and assert themselves to get the best possible outcome for residents. By applying a Material Citizenship approach it has been reported staff are less likely to rush to the assumption that medical intervention might be the best way forward to to reduce behaviours they find challenging. Instead, staff are using objects as a way of exploring why a person may be communicating in a negative way and have more confidence when working with people living with dementia. Publication: Material Citizenship: An ethnographic study exploring object–person relations in the context of people with dementia in care homes

945aa457-32c2-485e-a4e6-687eee387f97 COMPLETED ADOPTED PROJECT: Optimising Outpatients: Effective service transformation through face-to-face, remote and digital care delivery. Principal Investigator: Professor Chris Kipps, Consultant Neurologist at University Hospital Southampton NHS Foundation Trust Team: Dr Sarah Fearn, Senior Research Fellow, University of Southampton Starts: 1/2/2022 Ends: 31/07/24 Background The number of people living with a neurological condition is increasing, placing ever greater demand on existing services. The NHS Long Term Plan outlines a need for new service models to optimise care. Remote and digital technologies, aimed at improving efficiency and service delivery, can promote a more personalised approach to outpatient care, with a key outcome being a reduction of unnecessary appointments. ‘Remote care’ provides synchronous communication between the patient and the healthcare professional (HCP) across different locations. The COVID-19 pandemic accelerated the uptake of remote care with a rapid shift in appointments performed via phone or video-call. ‘Digital care’ provides technology-enabled asynchronous communication between the patient and their care team (e.g. messaging) where contact with an HCP is not required in real time. UHS has been a leader in developing digital care through the My Medical Record care platform that provides a unique digital tool connecting patients to their care team. Both remote and digital care provide cost effective, implementable opportunities to transform outpatient services in neurology and for other long-term conditions. Yet little is known about the most effective ways to combine the standard face-to-face appointment with remote and digital technologies to provide effective, efficient, high quality outpatient care. There has been some research into the advantages, disadvantages, barriers and enablers of remote care during the pandemic for people with neurological conditions (Nakornchai et al. 2021), with a growing body of work into digital healthcare and the moderating factors of its use and success within this population (Moccia et al. 2018). However, in a post-pandemic environment, we need to shift the focus from separate analyses of remote and digital care onto how best to combine face-to-face, remote and digital care to better serve patient needs and realise the ambitions of the Long Term Plan. Why this research matters During the COVID-19 pandemic, many outpatient neurology appointments were moved online or over the phone to keep people safe. Five years on, remote care is still widely used—but are we doing it well? We wanted to find out what works, what doesn’t, and how we can make remote neurology care better for both patients and healthcare professionals. What we did We analysed large national surveys about remote appointments from over 2,400 neurology patients and carers (via The Neurological Alliance’s national survey) and nearly 600 neurologists (via two surveys collected by the Association of British Neurologists). We also ran local focus groups and co-production workshops with patients, carers and healthcare professionals to understand what really matters in a neurology appointment. Together, we co-designed a set of practical, evidence-based recommendations to help services deliver better, more person-centred, and efficient remote neurology care. What people told us Remote care can be hugely beneficial when done well. Patients appreciated the convenience – avoiding travel, hospital parking and long waits - especially if they had mobility issues or lived far from the hospital. It also made it easier for carers or family members to join the appointment. But there were challenges. Patients worried they might not get the same quality of care without being seen in person. They were concerned about symptoms being missed, not being taken seriously, or struggling to explain themselves over the phone. Some felt remote appointments could feel rushed or impersonal. Patients were also concerned about maintaining their own privacy during the consultation and wanted to feel certain that their healthcare professional was also in a private space. Not all patients felt confident with video technology and weren’t sure what to do if things went wrong. Healthcare professionals also found remote working challenging at times — IT systems and technology weren’t always reliable and were clunky to use, finding a private room could be difficult, and it wasn’t always easy to ensure timely in-person follow up if a concern had been identified remotely. What we recommend Together with patients, carers, and professionals, we developed key recommendations to improve remote care: • Let patients choose the type of appointment that suits them—face-to-face, phone, or video—where it’s safe to do so. • Co-design clear, accessible tools and information with patients to improve trust in remote care and help all patients get the most out of their remote appointments. • Protect clinical staff time to keep digital platforms and patient resources up-to-date. • Implement fair and robust triage systems to reduce variation in care. • Provide regular training and support so staff can deliver the quality of patient care they aspire to. • Ensure there are enough private spaces for healthcare professionals to deliver confidential remote consultations. • Maintain enough rapid-access face-to-face slots to allow timely and safe in-person follow up when needed. • Improve digital systems and streamline admin to reduce stress, avoid unnecessary delays and boost satisfaction for both staff and patients. • Regularly review how remote services are working to make sure they’re fair and effective for all, especially those with less digital access or confidence. What’s next Remote care is here to stay. But for it to work well, it needs to be flexible, inclusive and built around patient and staff needs. We have shown that with the right systems, tools and support, remote neurology can deliver safe, high-quality and accessible services. These recommendations will not only optimise remote care in neurology but would also be adaptable to other clinical specialities across the NHS. What did we do with this new Knowledge? • Shared findings with patients and carers and healthcare professionals. • Informed content of the UHS outpatient webpages. • Provided national and local feedback to the UHS outpatient transformation team to inform strategy for remote care in neurology and more generally. • Used the positive feedback from our workshop participants to inform future approaches to Increase engagement and inclusion in research. • Drafted an article about optimising remote appointments in neurology for publication. What's next We will discuss the recommendations with the Association of British Neurology Quality Committee with regards to endorsement of the recommendations for a neurology clinical practice guideline. Once endorsed and put into practice, the next step would be to audit practice and measure change.

d6d7fb08-5eb7-4cab-afcf-359d64b8fe12 COMPLETED ADOPTED PROJECT: Young people’s barriers to mental health services Lead: Dr. Corine Driessens Co-Investigator: Professor Peter W F Smith Kim Markham Jones & Fiona Lacey – YoungMinds Nicole Davenport, Mahdi Hassan, Shahrbano Iqbal, Friday Skelton – young researchers recruited by and in employ of YoungMinds Starting date: October 2022 Ended: July 2025 Published in journal of psychiatric research online: Use or no use? Young People's engagement with mental health services https://doi.org/10.1016/j.jpsychires.2026.01.034 Many young people in the UK experience anxiety or depression, but most can’t get mental health support when they need it. From the very beginning of this project, young people, both as young researchers and as participants in four co-production workshops, played a central role in shaping our questions, interpreting the findings, and explaining what the results mean in real life. Their insight guided every stage of the work. This study looked at what affects whether young people use mental health services and what happens to those who don’t. The biggest factor in getting help was whether health care professionals recognized the young person’s distress was a mental health disorder. Other things like, severity of symptoms, being a female, having fewer supportive people around, or having unemployed parents played a smaller role. Young people who didn’t use services were less likely to be female, come from single-parent families, have caring responsibilities, or have been bullied. They were also more likely to have good relationships with their parents. Those who did use services had poorer outcomes later in adulthood, suggesting they faced greater difficulties overall. Because specialist mental health services are overstretched, responsibility has shifted to GPs and teachers, who often feel under-resourced and not fully trained to meet these needs. The GPs we spoke to faced strict referral rules, long waiting lists, short appointments, and limited mental health training. The teachers we spoke to also felt pressure to support students without the resources or guidance they need. After hearing these findings, a group of young people from the “missing middle” (those struggling but not qualifying for specialist care) recommended: Training all school and college staff in mental health. Better support for apprentices at work. Peer support groups in schools, colleges, and universities. Safe spaces and housing support for LGBTQIA+ students. More help for young carers and fairer benefits. Better training for all health workers to support diverse communities. Looser referral rules so young people don’t have to be “ill enough” to get help. Youth hubs offering safe spaces, activities, and mental health support. Overall, the findings show the need for more inclusive, preventative, and joined-up mental health support for young people. Reflections on Young People involvement with shaping analysis framework for mental health .docx Download DOCX • 2.37MB What did we find out? Presented the findings at national and international conferences (e.g. MQ/DATAMIND, ADRUK, NIHR Statistics Group, EPA Epidemiology & Social Statistics, International Congress of the European Society for Child and Adolescent Psychiatry) Presented the findings at ARC Wessex webinar Presented findings on ARC Wessex website Where next? The young people who took part in our workshops were very clear about one thing: we need to start much earlier. They told us that helping children learn emotional skills, like understanding their feelings, managing stress, and asking for help, before stigma takes hold could make a big difference in preventing mental health problems later on. Taking this guidance seriously, our team has now grown to include experts who know how to design effective mental health programmes for primary schools, as well as researchers who can identify exactly which elements such a programme should include. Our next step is to develop a primary school–based intervention shaped by what young people told us matters most. Because this type of work sits outside ARC Wessex’s remit, we are now seeking external funding to take the project forward and bring this early-intervention programme to life. Olly Parker, Head of External Affairs and Research at YoungMinds , said: “This research from YoungMinds and the University of Southampton shines a vital light on the record numbers of young people needing mental health support. Growing up today is incredibly tough. Many young people are experiencing multiple pressures which impact their mental health, including poverty, inequality, intense academic pressure and the online world, so it’s no wonder so many are struggling. One of the clearest recommendations from the young people involved is the urgent need for early support hubs in every community. We know many young people face long waits for mental health support and become more unwell while waiting, which can lead to needing more urgent care. We need major reforms to address the root causes of poor mental health and for the Government to focus on reducing waiting lists so young people can get the support they need. The recent 10 Year Health Plan showed promising commitments with Young Futures Hubs and Mental Health Support Teams. These initiatives are vital to reducing pressures on the system, improving support and reducing waiting times - their rollout must be a political priority. But more is needed to tackle the scale of need - we need radical solutions that will address the reasons why so many young people are struggling in the first place.” Corine Driessens, one of the researchers based in Southampton, said: “It has been a truly wonderful and positive experience working with these groups of young people. Their innovative and fresh ideas across a wide range of ways to help others get the mental health support they need have been inspiring.”

bc679d13-74ba-4311-9808-713cccad3190 ADOPTED PROJECT: DIGNIFIE Gender-seNsitive evaluatIon oF a prIson alternativE DIGNIFIE: Gender-seNsitive evaluatIon oF a prIson alternativE - (intervention is known as Hope Street) Chief Investigator: Dr Emma Plugge – University of Southampton Project Team Members: Ms Donna Gipson – Empowering People: Inspiring Change, Ms Paula Harriott – Prison Reform Trust, Dr Kathy Kendall – University of Southampton, Professor Julie Parkes – University of Southampton, Dr Sara Morgan – University of Southampton Professor James Raftery – University of Southampton, Dr Lucy Wainwright Revolving Doors, Dr Naomi Gadian – University of Southampton, Dr James Hall – University of Southampton Organisations Involved One Small Thing, Prison Reform Trust, Ministry of Justice, Her Majesty’s Prison and Probation Services, Vivid Housing, Crown and Magistrates Courts, Southampton City Council, Adult Services, Southampton, Children Services, Southampton, Housing and Community Inclusion, Change Grow Live (CGL) Southampton, Southern Health NHS Foundation Trust, Hampshire County Council, Portsmouth City Council, Society of St James Background: This evaluation seeks to determine whether women’s health and wellbeing, social and criminal justice outcomes are improved when they are placed in a community based residential facility (Hope Street) rather than being imprisoned. The Ministry of Justice’s 2018 Female Offender Strategy sets out plans to improve outcomes for women in the community and custody. It aspires to ensure that fewer women are imprisoned and recommends the move to community management of women in contact with the criminal justice system (CJS), including residential women’s centres with places for women to bring their children. It is in this context that Hope Street, the community alternative to imprisonment, has been developed in Southampton. Women in contact with the CJS are some of the most disadvantaged people in society. One third of them will have been in care as children, two thirds live with ongoing domestic abuse and most will have experienced poverty. They have lower basic skills attainment than the general population, are more likely to be unemployed and to be in insecure housing. Their health is considerably poorer than that of women in the community; for example, the standardised mortality ratio for suicide is 20 times higher in imprisoned women than in the general population. This mixed methods study comprises qualitative research, a prospective cohort study and health economic evaluation. It started in 2021 and will be completed in 2027.

Case studies: Anna Badley It doesn't matter where you start. Find your research journey - there’s more than one path I love research and I always have done, but my journey to being awarded an ARC Wessex PhD Scholarship has been far from traditional. I have always been passionate about the nursing profession and in particular nurses and others who provide care in a person’s home. As a very busy District Nurse and Community Matron I had always assumed that research would be something I did later in my career. An incident at work left me severely unwell. This incident not only changed my life, it made me want to help others and learn about work pressure and how this impacts well-being and mental health. I moved into a Research Nurse position which was invaluable, it opened my eyes in seeing how research works in the NHS from research design to recruitment and data collection. It also gave me a great understanding of research governance and ethics. At the same time, I began work on my Master’s dissertation. I was fortunate enough to work with Professor Jane Ball, a globally renowned nursing researcher who became my supervisor. The MSc Dissertation allowed me to experience conducting my own research whilst developing skills in academic research. For anyone thinking of getting into research I would say go for it! Research is rich, rewarding and exciting. It doesn’t matter where you are starting from, there are so many opportunities available. It is easy to think that research or doing a PhD is an individual activity, I have learnt from my journey that it is only possible as a team - without the generosity of time, knowledge and leadership from Professor Jane Bal l, University of Southampton and Dr Sarah Williams , Solent NHS Trust this research would not be possible and I hope that together we can learn how to prevent nurses and others from getting harmed by doing a job that they love. Top tips Get in touch with your Research and Development team - they are a great source of knowledge about opportunities and how to start your research journey If you can, I would really encourage people to get experience in NHS Research Delivery, Internships are a good way of getting this experience Connect with people - research is only achieved in a team Find your research journey - there’s more than one path