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3a061229-d16f-48eb-aa36-30056ba5bad5 COMPLETED: INVOLVing pEople with cognitive impaiRment in decisions about their hospital nursing care (INVOLVER): a pilot study Principal Investigator: Professor Jackie Bridges Team members: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Jo Hope (Lecturer, School of Health Sciences, University of Southampton), Dr Tula Brannely (University of Bournemouth). Professor Katie Featherstone (University of West London) Ended: 31 December 2022 Partners: University of Southampton, Solent NHS Trust, University of Bournemouth, University of West London Collaborations developed through project: Alex Iles (grant co-applicant/film contributor) and the Treat Me Well Group (Southampton Mencap) (grant development and film contributors) The Grow Project, Southampton (film contributors) Different Strokes (Southampton) (film contributors) Mayes Bahrani (Hampshire and Isle of Wight Healthcare NHS Foundation Trust Patient Experience Group) (grant co-applicant) Catherine Mead (Portsmouth Hospitals NHS Trust, grant collaborator) Rosalynn Austin (Portsmouth Hospitals NHS Trust, grant collaborator) Francesca Lambert (University of Southampton) (grant co-applicant/film project co-applicant) Sofy Bazzini (Digital Learning Team, University of Southampton) (film project co-applicant) Pippa Collins (University of Southampton) (film project co-applicant) Anthony and Caroline Scott-Gall (film contributors) Lay summary We want to help nurses look after their patients in hospital. We want to help them find out how each patient likes to do things like getting clean, going to the toilet, eating and drinking. Some people have to go into hospital to get better. Sometimes, when they are in hospital, the nurses don’t ask them enough about the way they like to do things. For example, if they like a bath or a shower. Or if they need help going to the toilet. Or if they would like to walk about. Or what food or drink they like. Not being asked about these things is not helpful. It might mean that people end up getting sicker and staying in hospital longer. Or they may go home needing more help from their family. People with dementia, learning disabilities or stroke may not be asked these questions about what they like. Sometimes the nurses don’t know how to do this well. Sometimes they know how to do it but can’t do it. The reasons they can’t do it are not well understood. We are a group of people who want to make this better. Some of us work at a university finding things out. Some of us are nurses. We want to include people with dementia, learning disabilities or stroke in our group. This will help us think about how to make things better. We think we can help nurses by using ideas that have worked in other places. When people like us have an idea about how something can be made better, we try the idea out and see if it works. Summary of findings: We have been looking for good examples of how hospitals have changed what they do to make sure people with dementia, people with learning disabilities and stroke survivors are included in making care decisions in hospitals. We looked at all the research in this area and found only 11 studies that did this! Many more studies said they were making care ‘person-centred’ but did not look at how they could directly include people in decisions about their care. We are currently looking in detail at these studies to see what works well, what can go wrong and which bits work best. We will also check if the people who use or might the service were also involved in the design of the changes and testing them. We will report back soon! Our set of short films, Good Care For Me Is… were co-created with people with learning disabilities, stroke survivors and somebody living with Alzheimer’s. We won funding for this from the University of Southampton’s Public Engagement with Research unit (PERu) PER Development Funding Call 2020/21. These have been used in teaching nursing students at the University of Southampton and we are exploring where else they might be used to teach healthcare staff at the University and other good places. They will also be used in research to help design changes to services with patients and staff. Dr Jo Hope won funding from the NIHR’s RfPB (Research for Public Benefit) grant to follow the care of people with learning disabilities in hospitals, to try to understand why care between wards varies so much ( Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care - NIHR Funding and Awards ). Dr Jo Hope has been developing ideas on how to involve people with profound learning disabilities in research and has published about this with her PhD team. What did we achieve? Good Care For Me Is… films are part of the pre-registration nursing curriculum at the University of Southampton, supporting future nurses to understand how they can improve care for people living with dementia, people with learning disabilities and stroke survivors We have found new collaborators in the health service, and people with lived experience who are co-applicants on our successful Stage 2 NIHR Research for Patient Benefit grant called: Improving the care people with learning disabilities receive in hospital: an ethnographic study examining the experiences of people with learning disabilities and the organisation and delivery of their care. Our papers on the inclusion of people with profound learning disabilities in research are challenging research orthodoxy on who can and cannot be directly involved in research We have shared findings from our previous research in Nursing Times, which explores what makes it difficult for patients to ask for help in hospital and why this is more difficult for people with dementia Publications doi.org/10.1111/1467-9566.13435 doi.org/10.3390/socsci11040159 https://onlinelibrary.wiley.com/doi/10.1111/jan.15637 doi.org/10.3390/socsci13010037 What's next? We will be publishing our systematic review into interventions to engage people living with dementia, people with learning disabilities and stroke survivors in nursing care decisions in hospital settings We will explore how our films about care experiences among people living with dementia, people with learning disabilities and stroke survivors might enable more healthcare students and workers to develop their understanding of supporting these patient groups Dr Jo Hope is developing a research programme to explore how hospital care can be improved for people with learning disabilities We will explore and share practical strategies of how people with more profound communication and understanding difficulties can be involved in research and care decisions

747d2c2b-5ef2-4aa3-91d2-49259acbc2a5 Refinement of an eFalls tool - a multivariable prediction model for the risk of ED attendance or in-hospital fall or fracture in individuals accessing mental health or learning disability services - eFalls Chief Investigators: Dr Luis Marino, South West Yorkshire Partnership NHS Foundation Trust Dr Stephen Lim, University of Southampton Co-investigators: Professor Andrew Clegg, ARC Yorkshire & Humber, University of Leeds Professor Sam Chamberlain, University of Southampton Professor Chris Kipps, University Hospital Southampton Start Date: 1st April 2025 End Date: 31st March 2026 Partners: University Hospital Southampton NHS Trust, South West Yorkshire Partnership NHS Foundation Trust, NIHR ARC Yorkshire & Humber, University of Leeds Our Research Falls have a significant impact on physical health with increased risk of morbidity including, dehydration, pain, chest infection and reduced ability to get on with daily activities of living. This may lead to reduced levels of activity, social isolation, depression and anxiety. Individuals with a mental health or learning disability diagnosis have an increased risk of falls. Although several falls screening tools are available, they usually need a healthcare professional to manually screen electronic health records, which may not always be done. Falls have a big impact on health and social care systems and is a leading reason for admission to hospital. Treatment for fractures also costs the NHS an estimated £4.5billion a year. This study aims to take an electronic tool (eFalls) which automatically predicts the risk of falls in older people (over the age of 65 years) and explore whether it accurately predicts the risk of falls in adults with a mental health or learning disability diagnosis. We will use routinely collected data from two health services covering the regions of West Yorkshire and Hampshire and Isle of Wight for this study. Data for patients aged 18 years and above with a known mental health diagnosis will be included in this study. We want to know whether this tool can be used to predict the falls risk among people living with mental health disorders or learning disability and how effective the tool is in predicting falls. If shown to be successful, we will share our findings with healthcare commissioners and policymakers and the following steps will be to pilot this tool in the healthcare setting to explore its impact on patient outcomes.

Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family < Back Truth or Dare? PhD "I'm Lovin' It", Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family Oopsy-daisy, sorry guys. I know you've been on the edge of your seat, barely able to focus on your own work, wondering what I have been up to. I'll put you out of your misery then. Ok, so, remember, I moved back to Portugal in the middle of my PhD ( Catch up with it here! ). My smile faded as we hit 45°C and I felt I was being cooked alive. Not easy to deliver level 8 thinking while melting like Olaf in the sun. I'll tell you what, I actually had a great 3rd year on the PhD (read this part while playing “I am on top of the world” , by Imagine Dragons). But today I want to tell you the behind the scenes, because what help am I, if I just show you the “makeup front”... Here is the not-so-sexy-backstage: 1. I got my first-author publication , on an impact factor journal of 3.36. The backstage: this was my 4th submission! 4th! It took me one year from first rejection to finally getting the paper accepted. I am definitely making a mug with a print-screen of my paper. "Bartolomeu Pires et al" aaaah, I like the sound of that… 2. I got another first-author paper accepted the same month I got first published! I went from not having a first-author publication to having two, in a few weeks. The backstage: I worked on this paper for the last 2 years (!!!), in my own time, as a “passion project”. Because of course, I rather write a paper on a Saturday or midnight, than watching "Somebody feed Phil" on Netflix. Of course not! But I was really driven by the accountability towards my patient group and clinical team, that made this work possible (thank you to everyone that supported the REACT-HD group). I tell you what is funny, I got this paper accepted without corrections... No corrections people! This was a service improvement project that I ran and wrote in my own time, and the paper comes back without corrections. Pretty sure those reviewers are angels sent to earth to make doctoral students feel better. 3. I wrote a book chapter for the Handbook Integrated Care right up my alley, focused on the needs of people living with neurological conditions. Backstage: I was pretty much with a month of continuous migraines due to this chapter. Every time I sat to write it my brain was in tears. Creating 10 000 words conscious that I had a PhD waiting to be done added pressure. I also wrote a massive chunk while at the beach. And by "at the beach", I mean I was at home writing while my beautiful sister was taking care of my daughter and entertaining her at the (actual) beach (Thank you, Tânia). I would do it all over again, but it wasn't easy. 4. I got a small grant with the European Huntington’s Disease Network working group (Multidisciplinary Treatment and Care) to run an inspired nominal group technique meeting with experts at the European Huntington Association Conference (and breathe). We worked on standards of care for people living with Huntington’s Disease. I led the meeting in Belgium last October and it was a great feeling to deliver on such a big event. The backstage: I was dying of fear that I would be embarrassed at European level. I travelled 2 days for a 4 hour meeting, nearly lost the train leaving Blankenberge, caught a cold, and was sick with some viral nastiness for the next… 4 months. This embryonic idea will feed into an actual research project, that I am very excited (and equally scared of), and so this under the pump opportunity was incredibly worth it. From left to right, the marvellous Huntington’s Disease Marvel-like team: Ruth Veenhuizen, Dina Sousa, Alexandra Fisher, (little hobbit Me), Annemiek Helmers and Asuncion Martinez Descals. Missing from the picture but equally awesome: Astri Arnesen and so many more members of the working group. I've done more stuff, but I'll stop the humble bragging now. There's something I want my PhD colleagues, particularly the newcomers, to think about. How much you give, and how much you take. See, every single one of these achievements, came with significant hurdles and personal sacrifice. You will be asked so much, constantly, and the more you deliver the more you will be asked to do. So for your own sake, I want you to think of how you will preserve your wellbeing throughout your journey. Here are two strategies that work for me. Don't agree to something right away. Ponder on the possibility. "I'll get back to you on that". "Should we schedule a meeting for next week to discuss that?". "Maybe, let me check my schedule". Never commit straight away. Asses the cost-benefit. Is it worth doing? What's in it for you? Do you need to give your all 100% or maybe 60% will do good enough? Think of how much energy and time you give to a task and make a choice on what to take on. [I had a mentorship session recently, so my mentor’s words are stuck with me (thank you, beautiful mentor).] I want you to have a good experience in your research journey, which, probably and hopefully, will be longer than your PhD. Set the boundaries you want for life, what are you comfortable living with? And make it work for you. I'm not sure I'll manage to write to you again, my scholarship is coming to an end, and I have this disease of wanting to save the world through my research… Impressive that on my 4th year I am still this perky. I blame my supervisors who are so supportive that I believe I can do anything (yes, I have the best supervisors, thank you!) I’m loving it. And somehow, I seem to be hungry at this thought… How about you? Truth or dare? Need me? Find me on socials: Instagram @integrate_hd LinkedIn https://uk.linkedin.com/in/sandra-bartolomeu-pires-841594190 Twitter @BartolomeuPires Email smbp1u20@soton.ac.uk Sandra Sandra Bartolomeu Pires Previous Next

3163bb6a-69ec-4161-8433-72a5810416ad POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study Chief Investigator: Dr Leire Ambrosio – University of Southampton Project Team Members: Professor David Baldwin – University of Southampton. Professor Mari Carmen Portillo – University of Southampton, Dr Kate Lippiett – University of Southampton, Dr Lindsey Cherry – University of Southampton, Dr Pritti Aggarwal – Living well partnership – NHS Southampton CCG, Mr Barney Williams Jones – University Hospital Southampton NHS Foundation Trust, Dr Sara Mckelvie – University of Southampton, Ms Linda Lamond – PPI co-applicant Organisations Involved: University of Southampton, Hampshire and Isle of Wight Integrated Care System, Living well Partnership – Southampton CCG. Oxfordshire Primary Care System, Anxiety UK, Mind, Oxfordshire. Background: People with long term physical conditions are 2-3 times more likely to experience mental health problems than the general population, particularly depression and anxiety. At least 30% of all adults with long term physical conditions also have mental health problems. People living with long term physical and mental conditions not only experience hardships relating to health but also have complex psychosocial, environmental, economic, and spiritual needs. Healthcare professionals find it difficult to deliver fully integrated care for these populations, partly due to systematic barriers and the fragmentation of health and social services. The advent of social prescribing link workers as a priority for the NHS provides an opportunity to address some of these hardships and needs. Social prescribing link workers aim to connect people to community local services to address their complex needs through a person- centred approach. However, approaches to social prescribing link worker implementation are variable, with potential pathway gaps, and there is unclear guidance for primary care networks about how to integrate this novel workforce into efforts to address and meet the complex needs of people living with long term physical and mental conditions.

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 ."

be5aaf78-5349-4834-a57a-fcddffbfb962 COMPLETED: GOODNIGHT Covid-19 to care-home-based vulnerable individuals Novel corona virus (COVID-19) is a virus that has spread quickly around the world. Elderly people with other health problems have a high death rate from the infection. There are no treatments for COVID-19 so prevention of infection is very important. COVID-19 is thought to infect people via the nose and mouth. Current best practise to prevent infection focuses on good hand hygiene, the wearing of masks and by limiting social contact. However, elderly people in care homes have to come into contact with staff members who are looking after them. Hypertonic saline nasal irrigation and gargling (HSNIG) has been shown to reduce the viral load of coronaviruses and has potential to reduce Covid-19 transmission in a community setting. The objective of this trial is to assess the feasibility and acceptability of care home staff adopting this technique. This research has now been submitted for publication. If you would like to know more about this study please contact Dr Ryan Buchanan Co-Chief investigators Dr Thomas Daniels, Consultant Respiratory Physician, Honorary Senior Clinical Lecturer, University of Southampton Dr Ryan Buchanan, Academic Clinical Lecturer, Primary Care, Population Science and Medical Education, University of Southampton Partners: University Hospital Southampton NHS Foundation Trust, Southampton CTU & NIHR ARC Wessex Co-applicants Professor Julie Parkes, Professor of Public Health, University of Southampton Professor Helen Roberts, Professor of Medicine for Older People, University of Southampton Emeritus Professor Jeremy Wyatt – University of Southampton Dr Beth Stuart – Medical Statistician, Southampton Clinical Trials Unit Dr Kinda Ibrahim - Senior Research Fellow, Faculty of Medicine, University Hospital Southampton NHS Foundation Trust Dr Andrew Cook – Public Health Consultant, Fellow of Health Technology Assessment, University of Southampton See the training video for Care Home staff: Publications http://dx.doi.org/10.14283/jnhrs.2021.3

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15c54097-9d85-4170-b90f-d0f5767a45d4 COMPLETED: Predicting Patient Deterioration Risks in COMMunities Team: Principle Investigator – Professor Michael Boniface, University of Southampton Co-Investigator - Dr Francis Chmiel and Dr Dan Burns, University of Southampton Clinical Lead – Dr Matt Inada-Kim, Hampshire Hospitals NHS Foundation Trust Completed What did we learn? We found evidence for policies and practices supporting safe COVID-19 integrated care pathways in community settings for early identification of deterioration and timely escalation to hospital. Research validating home oxygen saturations as a marker of clinical deterioration in patients with suspected COVID-19 informed national policies and was critical and rapid evidence necessary to support the COVIDoximetry@home ( https://doi.org/10.1101/2020.11.06.20225938 under peer review at BMJ Open) What difference did it make? £ 500K NHSx RECOxCARE (Remote COVID oximetry care) project for COVID Virtual Wards in collaboration with HHFT, North Hants Primary Care Network, Mid Hants Primary Care Network, South Central Ambulance Service NHS Foundation Trust, WAHSN and University of Southampton IT Innovation Centre. Scaling nationally as the COVID oximetry@home programme, the guidance for people at home to purchase a pulse oximeter published on the BBC News Website https://www.bbc.co.uk/news/health-55733527 and broadcast on BBC News at 10 on Thursday 21st January 2021 (citing the ARC publication) Clinical model was adopted by the World Health Organisation Digital and data analytics approach for remote monitoring of patients in communities was presented by Inada-Kim and Boniface as part of the NHSx@home innovators engagement event 16th Sept 2021. COVID oximetry@home received the overall winner of the prestigious for HSJ Patient Safety Award 2021 Service evaluation demonstrated improved patient outcomes Boniface, M., Burns, D., Duckworth, C., Ahmed, M., Duruiheoma, F., Armitage, H., Ratcliffe, N., Duffy, J., O’Keeffe, C. and Inada-Kim, M., 2022. COVID-19 Oximetry@ home: evaluation of patient outcomes. BMJ Open Quality, 11(1), p.e001584. What impact has it had on patient and the health system? Remote monitoring of patients in communities is important for improved patient outcomes, hospital attendance/admissions avoidance and resource planning. Remote monitoring is a key NHS transformation within the NHS@Home programme Remote monitoring is being extended from COVID to all Acute Respiratory Infections, and is likely to be extended to other conditions in the future What's next? We are working with Hampshire Hospitals and NHS England to transfer the learning from COVID to more general approaches. This research is being conducted in: HDRUK rapid insight project (Jan22-Sep23) called PHILOSARIP “ Predicting Hospital Length of Stay in Acute Respiratory Infections Patients” Wessex ARC PARIEDA project which is tacking “ Prediction of Acute Respiratory Infection outcomes prior to Emergency Department Attendance” Resources Covid Oximetry at Home Toolkit - via AHSN Wessex Publications https://doi.org/10.1101/2020.11.06.20225938 https://doi.org/10.1136/bmjopen-2022-067378 Original Project outline ARC Wessex is supporting research to explore COVID patient risks (deterioration, admission and readmission) in community settings working with Hampshire Hospitals NHS Foundation (HHFT) Trust who are co-leading the development of national pathways linking community, primary and secondary care. According to leading acute care clinicians (Dr. Inada-Kim - HHFT) working at the forefront of UK’s COVID-19 emergency response and policymaking, two of most pronounced COVID-19 Unmet Medical Care Needs (UMCN) include: UMCN-1) Risk prediction tools on triage and admission to emergency care: Evidence shows that early identification of physiological deterioration risks improves patient outcomes through timely and appropriate interventions, including escalations to higher levels of acute care through hospital admissions and intensive care [1] . UMCN-2) Rapid follow up of patients post discharge: There is little evidence to predict the occurrence of COVID19-related complications following discharge, particularly for vulnerable patients with multiple long term conditions at high risk of adverse complication events, and therefore rapid follow up and continuous monitoring of a patients recovery is needed to reduce risk of readmission to hospital. In addition, consideration of population infection risks resulting from contact and transmission from infected individuals has demanded alternative care delivery models. During the initial phase of the pandemic patients freely made their way to GPs and hospitals increasing infection rates within the general population and the healthcare workforce, leading to policies aimed at reducing contact between infected patients and health care workers (HCWs) [2] . This has driven then need to reimagine care pathways that minimise physical interaction using virtual care (video conferencing, mobile symptom reporting/scores, real-time remote sensing, and surveillance) delivered through telemedicine solutions. Virtual care not only protects the population and HCWs during highly infectious periods of a pandemic but importantly offers significant benefits to patients who can now be treated longer in community settings reducing the number of admissions to hospital, the length of stay and mortality. PPDRCOMM proposes to undertake research to develop predictive models for early warning detection arising from a COVID-19 infection, capable of running in residential settings such as care homes. Models will use near-patient observation data (e.g., temperature, respiration rate, and blood oxygen levels), patient demographics, and comorbidities from patients in the community who are in the early stages of a COVID-19 infection. The measurements will be collected with high frequency such that machine-learning algorithms will be able to report real-time risk scores of imminent deteriorations. Overall, this models will allow for real-time detection of deterioration earlier than currently possible with conventional techniques. This will help address the clinical need for pre-emptively stopping the severe deterioration of those with a seemingly mild case of COVID-19. Read the Evaluation Pre-Print evaluation paper

91dc7d16-9cb6-45e1-b40a-33037865948b COMPLETED: Digital support for maintaining physical activity in people with long-term conditions What promotes and prevents health professionals using ‘digital’ technologies to support people with long-term conditions (LTCs) to maintain physical activity and improve their health and wellbeing? Principle Investigator - Professor Mary Barker ( meb@mrc.soton.ac.uk ) Senior Research Assistant – Dr James Gavin ( j.p.gavin@soton.ac.uk ) Team Prof Mary Barker (PI), Prof Maria Stokes (Co-Lead), Prof Suzanne McDonough (Co-Lead at RCSI), Mrs Luisa Holt, Dr Aoife Stephenson (RCSI), Mr Paul Muckelt, Dr Nisreen Alwan, Dr Katherine Bradbury, Dr James Faulkner (University of Winchester), Dr Dorit Kunkel, Dr Euan Sadler, Prof Sandy Jack, Mrs Rachael Eckford, Mr Jem Lawson (PPI) and Mr Ranj Parmar (PPI) Project partners • Royal College of Surgeons in Ireland • University of Winchester What did we find? We interviewed 15 GPs and health professionals to find out their experiences of using digital technologies, such as online consultations, mobile-phone applications (or ‘apps’) and websites, to support people with LTCs to manage their health. We now have a better understanding of the factors preventing and promoting the use of digital technologies by health professionals to support people with LTCs in the NHS. These included: Preventing : one ‘app’ will not suit all LTCs, ‘apps’ must be user-friendly and accurate, clinicians need to dedicate time to the technology, security risks, patients need to have digital literacy, and long-term investment is required (time and finance). Promoting : ‘apps’ being evidence based, peer/social support of GP networks (including positive feedback), charity endorsement, COVID-19 changing people’s attitudes to digital health, ‘apps’ being linked to a hospital’s IT systems, accountability/monitoring of ‘apps’, and digital champions What difference will this make? Better understanding of the factors preventing and promoting the use of digital technologies by NHS healthcare professionals can help researchers develop new assessments and interventions to help people with LTCs to self-manage their conditions. In future, it could inform a regional evaluation of existing self-management programmes and initiatives to support people with LTCs to maintain their health and physical activity, from a digital perspective What are we doing with this? We have published one journal paper in PLOS One ( 2024 ) and co-investigator, Prof O’Donough published one systematic review paper in Digital Health ( 2024 ) In conjunction with the ‘non-digital’ MOTH study, we are in the process of applying for funding for: A PhD studentship, and NIHR Research for Patient Benefit (RfPB) award Maintaining physical activity and social connections for people with multiple LTCs: intervention development. The aim is to produce a plan for how best to proceed with improving partnership working within Wessex. The aim is to produce a plan for how best to proceed with improving partnership working within Wessex. What next? We plan to combine the non-digital and digital findings from the MOTH programme and apply for NIHR RfPB funding to co-design a 12-week follow-on maintenance intervention to sustainphysical activity for people with multiple LTCs following existing PA programmes between healthcare and community settings. The intervention will be developed informed by and aligned to the NHS Neighborhood Health agenda (2025) and current Southampton Integrated Neighborhood Hubs project . A suitable funding call is the NIHR Research for Patient Benefit (RfPB) programme (tier 3), with a stage 1 deadline of February 2026. Digital MOTH summary Non-Digital Moth Summary Publications https://doi.org/10.1177/20552076221089778