Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs < Back Alzheimer's Europe Conference DEM-COMM researchers in Geneva Professor Ruth Bartlett - National lead for DEM-COMM, post-doctoral training scheme for applied dementia researchers across the ARCs DEM-COMM was out in force at the 34th Alzheimer’s Europe conference in Geneva. We weren’t all wearing DEM-COMM emblazoned bobble hats (next time, maybe?) but there were twenty of us, all presenting work, supporting each other, and generally making the most of being at this important annual event. Our headline act was Dr Esther Loseto-Gerritzen from the University of Nottingham, ARC East Midlands. Esther gave her first plenary talk: ‘Online peer support for people with young onset dementia’ in the largest auditorium I’ve ever been in; it was like the United Nations (see photo below). So very well done to Esther. We’re all proud of you and look forward to supporting you in your new role as Junior Board member and representative of the INTERDEM Academy . Other DEM-COMM fellows shared their work in a parallel session or one of the quick oral presentations (5 minutes), or like me, presented a poster. Some people gave two or three presentations - extra brownie points to you guys. Here’s a list of all works in the order they were presented at the conference, followed by a collage of photos of each person giving their talk. Oral presentations Hannah Wheat ‘Findings of the realist mixed methods, longitudinal evaluation of the D-PACT (dementia personalised care team), primary care based, post-diagnostic, dementia care model’. Amirah Akhtar ‘Depression and dementia risk: exploring the impact of cognitive dysfunction during recurrent depression in middle-aged British South Asians: A qualitative study. Orri McDermott ‘Co-working with local Caribbean communities to raise awareness and normalise talking about dementia’. Neil Chadborn ‘Yaad participatory project: exploring memories with South Asian Communities to understand the context of family of care for people with dementia’. Marie Poole ‘Understanding post-diagnostic dementia support through football organisations to provide person-centred, culturally appropriate support for underserved communities’. James Faraday ‘Better mealtimes for people living with dementia: working with care homes to share good practice’. Rasa Mikelyte ‘Inclusion from the start: co-development and application of a priority setting method for dementia care research’. Emma Elliot ‘Physical activity interventions for hospitalised patients with dementia: systematic review’. Orri McDermott ‘Lived experience of advance care planning and shared decision making’. Rasa Mikelyte ‘Co-designing an easy-read measure of care-related quality of life: reflections on involving people living with dementia and their supporters’. Megan Rose Readman ‘Understanding the experience of hearing loss for people living with lewy body or parkinson’s disease dementia. Emmanuel S. Nwofe ‘DEM-SAFE: co-designing information campaigns to promote brain health and reduce dementia risk in south Asian and African Caribbean communities in the UK’. Amirah Akhtar ‘DEM-SAFE: Living well with dementia for south Asian and African Caribbean communities in the UK’. Posters Jiamin Du ‘Prevalence and correlates of neuro-psychiatric symptoms in individuals referred to a memory clinic, and the distress experienced by their caregivers’. Hannah Wheat ‘Triadic communication during dementia care: a conversation analytical study. Megan Polden ‘Music Make Us! The impact of singing and dancing interventions on people living with dementia’. Tamara Backhouse ‘How can we improve personal care assistance for people living with dementia to reduce refusals of care? A realist synthesis Juanita Hoe ‘Risk Assessment in people living with dementia: a systematic review’. Esther Loseto-Gerritzen ‘Online peer support for people living with dementia: a scoping review’. Hannah Wheat ‘Supporting dementia support workers to adapt to their role within a primary care setting: what works, for whom and in what circumstances’. Ruth Bartlett ‘Building capacity in applied dementia research’. Chris Poyner ‘Personalising domiciliary dementia care via co-designed computational matching: a study protocol’. Ilianna Lourida ‘Data-driven discovery of associations between prescribed medication and dementia risk: a systematic review’. Emmanuel S. Nwofe ‘Dementia risk factors and brain health: a scoping review of interventions to reduce social isolation and loneliness among minority ethnic populations in OECD countries’. Thanks to Sarah Smith for darting around the venue to take these shots, great job! Previous Next

3a7ef7ca-de0e-49f1-be5c-8349df40131c ADOPTED: Community Alternatives to aCute Hospitalisation for Older People who have Fallen (CAtCH-Falls) Principal Investigator: Dr Sara McKelvie, GP & NIHR Clinical Lecturer at the Primary Care Research Centre, University of Southampton. Team members: Lois Woods, Southampton Health Technology Asessments Centre, University of Southampton. Dr Rachel Dewar-Haggart, Primary Care Research Centre, University of Southampton. Professor Peter Griffiths, Health Sciences, University of Southampton Associate Clinical Professor Jacqui Prieto, Health Sciences, University of Southampton Dr Dan Baylis, Chief Medical Officer, NHS Solent Foundation Trust Dr Syed Hasan, Clinical Lead for Virtual Wards, NHS England Dr Elizabeth Angier, PhD student Main funding: NIHR School For Primary Care Research Starts: 1 April 2024 Ends: 31 March 2026 Summary Each year 30% of older people living in the community fall and are often taken to hospital for assessment. National guidelines recommend that after a fall, older people have a thorough check up and help to prevent further falls. We currently don’t know what the best assessment is for older people who fall and are assessed at home. There are several health services which can assess people in the community without a hospital visit. These can be described as “Community Alternatives to aCute Hospitalisation” (CAtCH) services. In different areas in the country these services have different team members, resources and ways of working. Research is needed who and what is needed to work in CAtCH services, particularly to support older people who have fallen. This study plans to look at previous work in this area by looking at published articles, service reports, government documents and internet resources to find out what is essential for these services. We also plan to survey and interview people who work in CAtCH services in the UK to understand what is available for older people who have fallen. The research findings will be used to develop resources for patients, the public and healthcare workers to showcase CAtCH services. The team also plan to produce a report for healthcare commissioners and support policy-makers. It will also allow the team to apply for further research funding in this area including further projects to look at public awareness of CAtCH.

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.

aeb3153c-5d74-4046-b64a-afed7e369f76 Understanding the Networks, Effects and Teams involved in Community Alternatives to ACute Hospitalisation for Older People in Hampshire and Isle of Wight Region – CAtCH-NET Chief Investigator: Dr Natalie Cox, NIHR Academic Clinical Lecturer Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton Team: Dr Stephen Lim, Principal Clinical Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton & Honorary Consultant Geriatrician University Hospital Southampton NHS FT Dr Sara McKelvie, NIHR Clinical Lecturer Primary Care Research, Primary Care Research Centre, Faculty of Medicine, University of Southampton Dr Carole Fogg, Senior Research Fellow, School of Health Sciences, University of Southampton Start: 1 October 2024 End: 31 March 2026 Partners: Hampshire and Isle of Wight NHS Healthcare Foundation Trust, Isle of Wight NHS Trust, Portsmouth Hospitals University NHS Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton Background In Southern England, there are more older people than in many other parts of the country. Many of them live with several health conditions that can suddenly get worse. When this happens, they often need quick help from healthcare professionals. Whenever possible, it’s better for people to get this care at home rather than going to hospital. This matches the government’s plan to move more healthcare from hospital to the community. To support this, urgent care services have been set up across Hampshire and the Isle of Wight. These services aim to treat older people at home when they become unwell. But even with these services in place, many older people still go to hospital emergency departments. Some are sent home within 24 hours, which suggests they might have been safely treated at home instead. That’s why it’s important to understand how these urgent care services are working. Although they are close to each other, they are all set up differently. This research will look at the teams and networks of healthcare staff who help older people avoid hospital stays. We will interview people who work in these services and those who receive care from them. We’ll also study data from two local emergency departments to learn more about why some older people go to hospital and are sent home. By doing this, we hope to better understand how older people move through the urgent care system, and what helps or gets in the way of good care. We’ll also look at whether things like where someone lives, or whether they have a certain problem, affect their chances of going to hospital when it might not be needed. Our findings will help the NHS organisations design better urgent care services, so more older people can be safely cared for at home rather than in hospital. What have we found out? The analysis of the data is ongoing for CAtCH NET: We have data for UHS emergency department and have a cohort of 25,000 patients representing over 40,000 attendances. We are currently analyzing the data to understand the characteristics of these patients and factors related to discharge within 24 hours. We have completed interviews with staff who work within community urgent care services for older people, those who refer to them and those working closely with the emergency departments. Three main themes encompass the experiences of the participants: Complexity in urgent care service provision Complexity of work to avoid hospital admission Complexity of navigating an array of services and personnel What will we do with this new knowledge? We plan to create a report for the ICB and trust stakeholders. We will be working with HIW to conduct stakeholder meetings to discuss out findings and how they may inform ongoing service re-structuring. We have been conducting patient advisory groups meetings and have mapped their experiences to the findings of the qualitative data to aid in stakeholder discussions. We have also highlighted the study to a recent parliamentary call: 10.5258/SOTON/PP0162 10.5258/SOTON/PP0162 Publications Community alternatives to acute hospital (CAtCH) assessment services: Design principles and implementation challenges - Sara McKelvie, Margaret Glogowska, Daniel Lasserson, Joanne Reeve, 2026

9cf70c4f-6d1c-4acf-8a29-5aa00565f951 ADOPTED (PhD): PREPARE-to-ACT study: Preparing for and Responding to Emergencies – A multi-phased qualitative investigation of Patients’ And members of their RElational networks’ decisions to use urgent and emergency care during Anti-Cancer Treatment Principal Investigator: John Defty, University Hospital Southampton NHS Foundation Trust Start: September 2022 Ends: September 2026 Background Complications of anti-cancer treatment can be life threatening . Anti-cancer treatments, including chemotherapy, radiotherapy, and immunotherapy, are increasingly provided on a day-case basis , meaning that complications occur at home and necessitate a response from urgent and emergency care services . Evidence suggests people receiving anti-cancer treatment delay seeking help despite access to dedicated emergency care (acute oncology services) . Focus of research to date has been for what reasons and when , rather than how and why, people with cancer use these services. Evidence suggests patients and informal carers rely on prior instructions from cancer specialists to identify and interpret the severity of complications but find relating to this information difficult when acutely unwell . Emergency ‘contingency planning’ was identified as a priority for improving the safety of anti-cancer treatment but, there are few studies that describe how pre-treatment emergency planning influences help-seeking for complications of anti-cancer treatment . With the number of people eligible for anti-cancer treatment expected to rise by two million by 2040, the need for research is now urgent. Results from our scoping review (completed; drafted for publication) suggest preparing for and making sense of urgent and emergency care is hard work for people with cancer. It also revealed poor understanding of how this work might differ for people receiving different types of treatment. This study aims to address these gaps by answering the question: ‘How do patients and informal carers prepare and seek help for complications of different anti-cancer treatments?’

22c6bc93-4002-4a39-ba1e-6b7c981fbe5f A qualitative case study to understand Young people’s food purchasing patterns in CONvenience stores in the school neighbourhood environment (Y-CON) Chief Investigators: Janis Baird and Christina Vogel, Professor of Public Health and Epidemiology and Adjunct Professor of Food Policy, MRC Lifecourse Epidemiology Centre, University of Southampton Team: Dr Sarah Muir, Senior Research Fellow, MRC Lifecourse Epidemiology Centre, University of Southampton Dr Kath Woods-Townsend, Principal Research Fellow, School of Healthcare, Enterprise and Innovation Dr Sarah Crozier, Senior Statistician, MRC Lifecourse Epidemiology Centre, University of Southampton Dr Hayward Godwin, Associate Professor of Psychology, University of Southampton Professor Marcus Munafo and Dr Olivia Maynard, Bristol University Ravita Taheem, Southampton City Council, lead on childhood obesity Partners: Bristol University, University of Southampton, Southampton City Council Start: 1 October 2024 End: 31 March 2026 Background A poor diet significantly contributes to illnesses including heart disease, diabetes and stroke. One in three children who leave primary school have obesity or overweight, raising concerns about their future health. The teenage years are crucial because this is when young people start making their own food choices, setting the stage for their lifelong eating habits. The Problem The journey to and from school often involves passing by convenience stores which rely on shoppers, such as young people, to impulse-buy products that are high in fat, salt and sugar. The presence of these stores in school neighbourhoods may be linked to the high rates of childhood obesity. Our Research Focus We used a qualitative approach to understand convenience stores near schools influence the buying patterns of young people making their own dietary decisions. Study Design Our research ran between October 2024 and March 2026. Forty-three students from two secondary schools in Hampshire took part in focus groups about how they used convenience stores near their school. Young people from the LifeLab NxtGen programme were also employed as citizen scientists: they took part in a ‘mystery shopper’ task to purchase a healthy product near the stores and reported on their experience. NxtGen researchers also worked with the team to support the analysis of findings and development of dissemination materials. Engagement and Dissemination The team, including members of the NxtGen research group, have developed an infographic detailing core recommendations for independent stores in the UK to help improve young people’s access to healthier food. Plans are underway to share this infographic with our young participants, as well as policy makers and retail groups. Internationally, our research will also be presented in scientific journals and at conferences.

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

663cd08e-9825-45c9-8e1b-c94d485206ee SOCIAL CARE: Building capacity in social care through co-produced research and a research learning partnership between University of Portsmouth and Portsmouth City Council Background Social care is facing many challenges and, in a time where staff are stretched and resources are low, research can feel like a luxury rather than part of daily activities. Yet research is crucial for improving practice and finding innovative ways to overcome challenges. To increase capacity in social care research, academia and social care need to work together to understand each other and co-produce a programme that will fit with the workplace demands of social care and focuses on issues that hold meaning and value to those we are seeking to engage. The work that we co-produce will therefore lead to tangible practice change and/or a strengthening of the evidence for existing practice. The University of Portsmouth (UoP) and Portsmouth City Council (PCC) do not currently have a research learning partnership established, however our civic partnership agreement provides a strong impetus to build a learning partnership that will inspire, engage, and provide professional development for social care professionals in research, whilst providing academics with direct experience of co-producing research in complex public service contexts. Through this project we aim to develop such a research learning partnership. Contributors: Amy Drahota, Reader in Health & Social Care Evidence & Evaluation, University of Portsmouth Carole Fogg, Senior Research Fellow, University of Southampton Patricia Gilbert, Lecturer (Sociology), University of Portsmouth Patryk Jadzinski, Senior Lecturer (Paramedics), University of Portsmouth Gail Mann, Research Development Lead, Portsmouth City Council Nils Niederstrasser, Senior Lecturer (Psychology), University of Portsmouth Lucy Porteous, Senior Lecturer (Social Work), University of Portsmouth Clare Rachwal, Deputy Head of Service, Adult Social Care, Portsmouth City Council Jenny Roddis, Associate Head (Research & Innovation), University of Portsmouth Sharon Smith, Principal Social Worker, Adult Social Care, Portsmouth City Council Annabel Tremlett, Senior Lecturer (Social Work), University of Portsmouth Aims and Objectives Our overall aim is to build research capacity in social care through establishing a research learning partnership between the University of Portsmouth (UoP) and Portsmouth City Council (PCC) adult social care team, the public and other key partners, and develop co-produced research relevant to PCC social care practice and national issues. We will achieve this via the following four objectives: A. To establish a research learning partnership for social care between UoP and PCC which will provide learning opportunities for both partners and their associated stakeholders around the development, design, and delivery of research. B. To identify and prioritise research topics for development for further grant funding opportunities, within social care and also in collaboration with other health and care delivery partners. C. To undertake preliminary research activities (e.g. a systematic review, public involvement activities, and potential data gathering) on a prioritised topic in adult social care, which will underpin a funding application for further primary research. D. To develop guidance on increasing capacity in social care research via co-production in collaboration with wider ARC Wessex social care research partnerships. Research Plan / Methods We will begin this project with a three-month exploratory process with social care teams, that will be about relationship-building and working together to devise a programme of activities that will meet the needs of social care, establish what a learning partnership would look like, and how this will fit with the expertise of academics. We envisage that we will co-develop some activities that centre around relevant topic(s) of importance to social care, and that the academics can support based on their expertise. Our focus will be adult social care, to tie in with the School of Health & Care Professions’ thematic strength in older adults, PCC’s adult social care team, and the ‘ageing and dementia’ research area of ARC Wessex. The project will involve a researcher-in-residence, employed by UoP but embedded within PCC, to work alongside adult social workers and build a culture of joint research across the organisations. We will be seeking to integrate research into current processes, for example through senior social worker team meetings and practice support forums that would be happening anyway. Throughout the project we will be seeking to establish a legacy of ongoing work and practice, through the development of funding applications for future projects and the development of a community of practice that will outlive the duration of the funding, nurture an affinity for research, and help demonstrate the value of research to social care. Summary of findings This project had four strands: 1: Growing a research culture and working together We helped six people at Portsmouth City Council (PCC) to become research active or develop their research skills; four were awarded ‘Visiting Researcher’ status at the university, and two were social workers employed on the joint social work project as research assistants. Of the four visiting researchers: One social worker received mentorship to undertake their own small research project; One Mental Health Practitioner developed their research ideas, and applied for research funding; Two individuals independently completed a research project and were supported to develop their analysis and findings through collaboration with University researchers. All individuals are pursuing further research and supporting each other. 2: Joint social work project A research question was developed through discussions and shadowing within adult social work teams at PCC. This led to a review of the evidence on how and why different features of collaborative working may impact the outcomes of older adults receiving services. We found 28 relevant studies that helped develop three theories on collaborative working. The theories relate to: how multidisciplinary team meetings are managed; how staff can learn from each other and feel safe to speak out; how new solutions for older adults can arise when staff feel safe to speak out. These theories can be used to develop recommendations and new interventions to improve how social workers can work with other professionals to provide the best care for older adults. 3: Research learning programme A 6-part seminar series, Research Skills in Social Care , was delivered in-person for colleagues at PCC and online for wider audiences. The series gave an overview of the six stages of conducting a literature review to grow research knowledge and encourage discussions. Team members also gave seminars on their research projects through the Applied Research Collaboration Wessex online seminar series. 4: Reflecting on what we have learnt about growing research The process of growing research has been rewarding and challenging. Success has come from mentorship and individual relationships where trust and rapport are developed, and confidence is built at a steady pace. Arranging rooms and technology in a different organisation for the seminar series was difficult, however the in-person nature of the seminars was beneficial for sparking informal conversations and removing barriers between research and practice, presenting an “accessible” face. What we did with this Knowledge The knowledge from the joint research project is being shared with the wider adult social work team to inform team development. Additionally, we are working the Health Determinants Research Collaboration (HDRC) at Portsmouth City Council to establish how the activities to grow research can be expanded to other areas of the city council and local authorities wider afield. We are working together to develop a report for publication and continue to work with the adult social work team to grow research. Where next? • A funding application has been submitted by an Approved Mental Health Professional to conduct a literature review around racial disparities in coercive mental health treatment •A social worker is planning small research project evidencing the need for a larger autism/neurodivergence support service for adults •Further collaboration with Health Determinants Research Collaboration initiative •Discussing development of interventions based on the findings of the joint research project. This will form the basis of a future funding proposal. Koren Luddington – Visiting Researcher & Social Worker “I was matched with a mentor from the University, who was empathic and reassuring of my self-doubts. She made me feel as though all questions were valid and she was able to provide explanations that felt personalised and relevant to my field of work” Taken from Koren’s blog post on NIHR ARC Wessex Supporting capacity building in this project has been really eye opening - throughout this project I have met incredible, passionate people that are doing everything they can to provide support. There is such a wealth of knowledge and innovation happening in Adult Social Care, and it’s up to us in research to support and encourage that. Dr Leah Fullegar Leah.Fullegar@port.ac.uk

945aa457-32c2-485e-a4e6-687eee387f97 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 Research team: Patricia Fuller, Sarah Fearn, Sally Dace, Amanda Wollam, Angeliki Zarkali, Adam Cowan, Sam Mountney, Georgina Carr, Sofia Eriksson Starts: 1/2/2022 Ends: 31/07/24 Background Remote consultations are now a routine part of neurology outpatient care. Their rapid expansion during the COVID-19 pandemic demonstrated clear benefits, including greater convenience, reduced travel, and improved flexibility for patients and carers. However, it also exposed important challenges relating to clinical assessment, communication, privacy, digital access, and service organisation. While national policy strongly supports digital innovation and outpatient transformation, there has been limited evidence on how best to combine face-to-face, telephone, video, and digital communication in everyday neurology practice. REMOTE-Neuro was developed to address this gap by combining national-scale data with co-production to generate a practical, evidence-based framework for optimising hybrid care. Why this research matters Remote care has become embedded in the NHS faster than the evidence and systems needed to support it. At the same time, national strategies promote hybrid care, patient choice, and digital inclusion, but offer limited practical guidance on how to translate these ambitions into real-world outpatient services. REMOTE-Neuro was designed to bridge this translational gap by developing clear, stakeholder-informed recommendations grounded in how care is actually delivered by clinical teams and experienced by patients and carers. What we did We used a two-phase mixed-methods approach. National analysis We analysed free-text responses from: 2,463 patients and carers (Neurological Alliance survey) 593 neurologists (Association of British Neurologists surveys) This provided one of the largest multi-stakeholder datasets on remote care within a single specialty. Co-production We then worked with 64 patients, carers and healthcare professionals through workshops, interviews and focus groups to: validate findings refine interpretation co-produce practical recommendations The final outputs were aligned with the NHS Long Term Plan and the Outpatient Recovery and Transformation Programme. What did we learn? Participants valued flexible choice in consultation modality, recognising the accessibility and convenience of remote care, but expressed concerns about clinical quality, privacy and equity. Both patients and clinicians viewed remote care as a distinct skill set requiring tailored training and stronger digital infrastructure. A particularly important finding was that some patients appeared to perceive remote appointments as less legitimate or lower value than face-to-face care. This has implications for engagement and equity and exploring and addressing this legitimacy gap is likely to be just as vital as any technical upgrade. What we recommend We co-produced the REMOTE-Neuro Framework: REcommendations for optimising Modality, Operational efficiency, Training and Equity in NEUROlogy The framework focuses on practical, implementable changes, including: supporting real patient choice of appointment type where clinically appropriate using robust triage systems to match patients and problems to the right modality recognising remote care as a distinct clinical skill, with training and support for staff developing clear, co-produced information to help patients prepare for remote appointments ensuring access to private, confidential consultation spaces maintaining capacity for timely face-to-face follow-up when needed improving booking systems, and digital infrastructure protecting time for service development and innovation monitoring services for equity, safety, and patient experience Rather than acting as a rigid checklist, the framework provides a structured, adaptable approach that services can use to implement and evaluate hybrid neurology care in their local context. What difference could this make? REMOTE-Neuro provides a practical route from broad policy ambition to real-world implementation. Rather than serving as a rigid checklist, REMOTE-Neuro is designed to be adapted through local co-design and aligned with available infrastructure. It prioritises what matters most to staff and patients to enable continuous and meaningful quality improvement over time. It helps services address key questions such as: Which patients are best suited to remote or face-to-face care? How can safety and quality be maintained within hybrid models? What support do patients and staff need to make remote care work well? How can services reduce inefficiencies while improving experience? Although developed in neurology, these challenges are shared across many specialties. The framework therefore has wider translational relevance for outpatient services across the NHS seeking to optimise hybrid care. What was the impact? REMOTE-Neuro has already made a contribution to academic, clinical, and policy discussions. The study has been published in BMJ Neurology Open as REMOTE-Neuro: Co-produced Recommendations to Optimise Remote Neurology Care Professor Chris Kipps was invited to give a platform presentation on the work at the Association of British Neurologists national conference in Edinburgh The Neurological Alliance presented the findings to the NHS England Transformation Team The outputs have informed local outpatient transformation discussions at University Hospital Southampton The recommendations are contributing to ongoing discussions with the ABN Quality Committee regarding the development of a clinical guideline for remote appointments in neurology This demonstrates early impact at both local and national level, and positions the work as a practical contribution to current debates on outpatient redesign. What’s next? Next steps include: supporting implementation and evaluation of the framework in practice developing more detailed neurology subspecialty guidance contributing to the development of a clinical guideline for remote appointments in neurology with the ABN Quality Committee further research into issues such as patient perceptions of value and equity in hybrid care More broadly, REMOTE-Neuro provides a strong foundation for ongoing work on inclusive, person-centred outpatient design across neurology and other specialties navigating the optimisation of hybrid care.

a95fe10a-8d2a-464a-8d99-2e3067bb89e8 ADOPTED PROJECT: ExACT-CF: Exercise as an Airway Clearance Technique in people with Cystic Fibrosis – A randomised pilot trial ADOPTED PROJECT: ExACT-CF: Exercise as an Airway Clearance Technique in people with Cystic Fibrosis – A randomised pilot trial Principal Investigators: Dr Don Urquhart , Dr Zoe Saynor Co Applicants : Mrs Lorna Allen (Cystic Fibrosis Trust), Professor Steve Cunningham, Professor Ioannis Vogiatzis , Professor Steff Lewis, Ms Aileen Neilson Partners: University of Portsmouth, University Hospital Southampton NHS Foundation Trust, University of Edinburgh, University of Northumbria at Newcastle, Cystic Fibrosis Trust, CF Warriors (Charity) Starts: May 2022 Ends: 31 October 2023 Background: Cystic fibrosis (CF) is the UK’s most common inherited genetic condition and affects more than 10,500 people. The disease causes problems with the movement of salt and water in the body, resulting in sticky mucus building up, mostly in the lungs and gut. Thick mucus in the airways leads to repeated infections which, over time, damage the lungs. Chest physiotherapy is prescribed to loosen and clear sticky thick mucus from the airways and so to help to reduce lung infection. Chest physiotherapy is a routine treatment to keep people with CF healthy. However, many say it is time consuming and a burden. People with CF have asked if doing exercise could have the same effect as chest physiotherapy sessions for helping clear mucus. Exercise could be more enjoyable and less burdensome. Through a recognised priority setting partnership, the CF community recently ranked research to ‘reduce the burden of their care’ and answer ‘whether exercise can replace chest physiotherapy’, as their number 1 and 7 priorities. Surveys show that many people with CF have occasionally chosen to replace chest physiotherapy with exercise for airway clearance, and we recently confirmed this through a UK-wide survey. We now need to know if they would be willing to take part in research that asks some to stop chest physiotherapy and to exercise (with coughs and huffs) instead. New medicine (modulators) have recently become available for many people with CF, bringing dramatic improvements in their health. Some people who have started modulators are considering whether they can reduce or stop treatments – including chest physiotherapy. So, we need to know the effects of stopping chest physiotherapy and determine if exercise can be used instead - our study aims to understand this. Our recent survey in people with CF, their families, physiotherapists and doctors, showed us that many consider hard exercise with coughs and huffs to be able to clear mucus from the airways. We will study 50 people with CF (>12 years old) for 28-days. We will ask half of them to continue their usual care, and half to stop chest physiotherapy and do exercise that gets them breathing deeply (with coughs and huffs) instead. We will see if people are willing to start and continue with such a study and what they think of the study processes. We will also see how stopping chest physiotherapy and replacing it with exercise affects measurements of their lung function. Within the study we will talk with people with CF and members of their CF team to understand their experiences. This information will tell us whether a larger study can answer Publications Safety, feasibility and efficacy of exercise as an airway clearance technique in cystic fibrosis: a randomised pilot feasibility trial | Thorax

Justin Strain < Back Thinker, sailor, author, physio Justin's journey so far.. Justin Strain Justin Strain I began my healthcare career a little later than most. At the age of thirty, after a short career in the Royal Navy, I took my first steps into the University of Southampton’s School of Health Professions. I was interested in research from day one. The importance of evidenced-based practice was drummed into us throughout our time at university. From the moment we first wielded a tendon hammer or a stethoscope we were encouraged to ask ourselves those all-important questions: What is the best treatment? Does it work? Why am I doing this? Starting out as a musculoskeletal physiotherapist, I threw myself into clinical practice, desperate to learn every treatment technique and test I could get my hands on. I believed that being a great clinician was about perfecting those tricky manual techniques and learning everything there was to know about anatomy. Or so I thought. Thinking differently Later, as I developed in confidence, I began to think differently about my practice. It seemed to me that what made most difference to my patients was the therapeutic relationship. Understanding the patient’s experience and learning to listen more and communicate better (and sometimes talk less!) started to seem more important than having the biggest toolbox of treatment techniques. Specialising in pain management helped me to appreciate how peoples’ experiences of health-conditions and healthcare were shaped by a complex web of social and personal interactions, making each person’s experience unique to them.The need to understand these unique experiences drew me to qualitative research. I wanted to go further than comparing different interventions. I wanted to understand the stories of the people at the heart of those interventions – our patients. The importance of narrative was not new to me. In my non-clinical life, I write children’s novels – I’ve written two so far and I’m working on a third. In my novel writing, I enjoy the magic of exploring fictional worlds from other peoples’ perspectives. I’ve always found that what brings a novel to life is the personal connection between the reader and the characters. I wanted to apply a similar approach to understanding patients’ stories - listening to, understanding and recording other peoples’ perspectives, and acknowledging the role of the researcher and the reader in interpreting those perspectives. While I was taking my first tentative steps towards qualitative research, the world of healthcare research was changing. The n=1 campaign was gathering momentum, and recognition of qualitative research was increasing. I wanted to get more involved, and found myself looking for the right opportunity. Then, at the beginning of 2020, the world turned upside down with the advent of the COVID 19 pandemic. Along with many other things, the COVID 19 situation has highlighted the need for research – to explore the impact of immediate responses to the crisis, and also to understand how the pandemic will influence longer term changes in how healthcare is delivered. One of those long-term changes is likely to be the proliferation of online healthcare. The plethora of online health interventions now on offer enables people to access consultations and courses that might previously not have been available to them, in a safe, socially distant way. I felt this area was worthy of more exploration, and I wanted to listen to the stories of service users, to understand how these changes had impacted on their experiences. I resolved to start a research project looking at patients’ experiences of online pain management in our own service, but I was struggling to find the time - alongside a busy job in clinical practice, dealing with redeployment and the current challenges of COVID 19, and being dad for our two wonderful children. The NIHR ARC Wessex Clinical Academic Internship has given me that time. It has enabled me to build and apply my skills in research as part of my clinical job, making a difference to how I can support patients within my service. So where am I now? I am in the early stages of my project – a systematic review of qualitative literature about patients’ experiences of online pain management, combined with semi-structured interviews with patients who have completed the online pain management programme within our own service.As well as time, the Clinical Academic Internship has provided a network of similarly minded people, interested in research and qualitative exploration of issues. The excellent events run by NIHR ARC Wessex have introduced me to new research concepts and skills. My supervisors, Dr Euan Sadler and Dr Lindsay Welch , have been extremely supportive and with their help my skills and confidence are growing. I am planning to complete my project in Autumn this year and I am hopeful that this will lead on to a pre-doctoral, and eventually a doctoral fellowship with NIHR ARC Wessex in the future. Dr Euan Sadler is an Associate Clinical Professor of Older People and Frailty within Health Sciences at the University of Southampton. Dr Lindsay Welch is a Lecturer in Adult Nursing and a Researcher in long term conditions. Previous Next

7982ebd7-aab7-4e3f-8493-b1caebcd4bea The Wessex FRIEND Toolbox (Family Risk IdEntificatioN and Decision) Identifying high risk groups early to improve health in young families in Wessex Principal Investigator: Professor Nisreen Alwan and Dr Dianna Smith Team members: Professor Nisreen Alwan (Professor in Public Health, School of Primary Care and Population Sciences, Faculty of Medicine, University of Southampton), Dr Dianna Smith (Lecturer in Geographic Information Science, Geography & Environment, University of Southampton), Professor Paul Roderick (Professor of Public Health, School of Primary Care and Population Sciences, Faculty of Medicine, University of Southampton), Dr Ivaylo Vassilev (Principal Research Fellow, School of Health Sciences, University of Southampton), Dr Grace Grove (Clinical Research Fellow, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton), Dr Nida Ziauddeen (Research Fellow, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton),Dr Lauren Wilson (Research Fellow, Geography & Environment, University of Southampton) Read report: Food Insecurity Risk Indices for Neighbourhoods 2021 Food Insecurity Brief LSOA Level Estimates Sept2021_online[2] .pdf Download PDF • 363KB Start: 21 October 2019 Ended: 30 September 2022 Project Partners: University of Southampton, Solent NHS Trust, Southampton City Council, Portsmouth City Council, Hampshire County Council, Health Education England, Oxford Brookes University Lay summary We know that prioritising health is complex, particularly for families living in social and economic disadvantage. The SLOPE CORE tool estimates the future risk of childhood overweight at the start of primary school. It can be used by health professionals in consultation with the families they are working with to help facilitate various interventions towards the prevention of childhood obesity. We have tested the acceptability and feasibility of this tool in the first phase of the Wessex FRIEND project, as part of a broader programme of work, aiming to improve the health of children and families in Wessex. We have trialled it with health visitors in the first instance, just so that we can get some initial feedback and improve it before combining it with other components of interventions. We have also been refining and tailoring area-based child poverty, food poverty and greenspace access measures to the local and regional context and population, so that our risk tool takes into account the area profile and resources where the family lives. These area-based measures, which represent neighbourhoods, may also be used independently by local governments and civil society/third sector to help in targeting resources to better support people living in areas of higher risk for food and child poverty, or with poorer access to greenspaces. What have we found out? We tested a digital tool called SLOPE CORE which predicts if preschool children are likely to be overweight by the time they start school. Health visitors and parents found the obesity prediction tool quick and easy to use. Using the tool provided the opportunity for health promotion, and may facilitate difficult conversations by giving an objective result and removing the perception of professional judgement. This may encourage conversations on healthy weight and could influence health visitor practice by increasing provision of anticipatory support on feeding. Health visitors felt that, when using the tool, the healthcare professional should have sufficient time to have a sensitive discussion and explain a conceptually difficult concept (risk). Parents felt that the tool provides an opportunity for behaviour change and potential to improve health for the child but can also provide reassurance. They appreciate the provision of additional resources and support with the results. However, before using the tool the healthcare professional should consider whether the tool is appropriate, as it may be unsuitable for some parents. We refined and tailored area-based child poverty, food poverty and greenspace access measures to the regional context and population. These provide improved tools for better planning and targeting of services by the local councils. These area-based measures are combined with the individual childhood obesity estimation provided by the SLOPE CORE Tool on one platform, which can be utilised by frontline professionals dealing with disadvantaged families. We also tested the feasibility of the Generating Engagement in Network Involvement (Genie), a facilitated social network intervention, as a means towards reducing risk of adverse family health outcomes. We tested this with Home-Start in Portsmouth which is a voluntary organisation. Staff found Genie simple to use, really liked the concept and found that familiarity with the system meant the process was much smoother for later entries. Staff felt that being able to fill out Genie on a phone or app would be quite useful. The option of other languages or built-in translation could also make it easier to use. Staff felt that Genie was particularly good for families feeling isolated or new to the area but was unlikely to be relevant for all. However, staff thought it was less realistic for them to use it within the timeframe of visits and other things that need to be done during a visit but they could potentially facilitate the use of Genie by encouraging people to do so themselves. The network mapping was useful as it made people realise what they have and what they need. Staff found it an interesting exercise to start the conversation and find out what was going on in the lives of individuals/families they were supporting. A potential barrier to the use of both tools is lack of wi-fi/internet connectivity. What difference can this make? Using the obesity prediction tool could provide the opportunity for health promotion and facilitate discussions by giving an objective result and removing the perception of professional judgement. This could encourage conversations on healthy weight and potentially influence health visitor practice by increasing provision of anticipatory support on feeding. Using the tool antenatally, or with a younger infant may allow for an easier conversation, allowing the healthcare professional to focus on prevention, as opposed to ‘correcting’ a parent’s current behaviour. Health visitors felt that parents were more likely to be receptive to a preventative approach. The refined area-based measures provide improved tools for better planning and targeting of services by the local councils. Network mapping using Genie made people realise what they have and what they need and help staff start the conversation to find out what was going on in the lives of individuals/families they were supporting. Why in this important? The Childhood Obesity Risk Estimation Tool has the potential to focus targeted intervention for the early prevention of childhood obesity. The updated food insecurity risk index has enabled local government to target available resources to those with greatest need. It has been included in the Joint Strategic Needs Assessment (JSNA) for Hampshire County Council. It has also contributed to food aid planning in Dorset, Hampshire and further resource planning in districts across the country. What’s next? The SLOPE CORE tool combined with the area based measures will require further testing to establish how it can be best used in practice, and any impact it may have on childhood obesity. This could be as part of a new or existing pathway which includes interventions designed to reduce risk of childhood obesity. Healthcare professionals using the tool should be trained in risk commination, be able to advise the parent on next steps, and have time to discuss what can be a sensitive topic. As SLOPE CORE only requires routinely collected data, it may be possible to build the tool into existing systems - such as healthy weight pathways, routine health visiting contacts and relevant GP consultations, which could save time and support existing work rather than further adding to workload for healthcare professionals. If internet access is unreliable, then a paper data collection sheet could be used to capture data required to use the tool at another time. After determining optimum timing and setting for tool use, a longer term evaluation is necessary to explore the impact of the tool on parents and healthcare professionals behaviours in the short term, and childhood obesity in the longer term. Publications: Ziauddeen, N., Roderick, P., Santorelli, G., Wright, J., & Alwan, N.A. (2022). Childhood overweight and obesity at the start of primary school: external validation of pregnancy and early-life prediction models. PLOS Glob Public Health. 2(6): e0000258. Ziauddeen, N., Roderick, P., Santorelli, G., Wright, J., & Alwan, N.A. (2020). OP55 Childhood overweight and obesity at the start of primary school: external validation of pregnancy and early-life prediction models. Journal of Epidemiology & Community Health, 74(Supplement 1), A26. https://doi.org/10.1136/jech-2020-SSMabstracts.54 Smith, D.M., Rixson, L., Grove, G., Ziauddeen, N., Vassilev, I., Taheem, R., Roderick, P., & Alwan, N.A. Household food insecurity risk indices for English neighbourhoods: measures to support local policy decisions. MedRxiv 2022:22273530. https://doi.org/10.1101/2022.04.06.22273530 (preprint and minor revisions requested at PLOS ONE) Smith, D. and Thompson, C. (2022) Food Deserts and Food Insecurity in the UK. Routledge. Further funding because of this research: ARC Wessex - Wessex DIET: Determining the Impact of covid-19 on food sEcurity in young families and Testing interventions MRC Clinical Research Fellowship (Dr Grace Grove) - Investigating the impact of food vouchers on diet composition and the prevention of childhood obesity Other impacts: The food security risk index has been included in the JSNA for Hampshire and has contributed to JSNAs and food aid planning in Dorset, Hampshire and further resource planning in Lancaster, Hull Hertfordshire and Greater Manchester to name a selection of Local Authorities, demonstrating the wider reach beyond Wessex.