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87b19b27-d8c8-4f33-9da0-73ea106dac3c Mental health Burden of Increased Living costs: Local Support (My BILLS) Principal investigators: Dr. Dianna Smith, Associate Professor, School of Geography and Environmental Science, University of Southampton and Dr Thomas Richardson, Associate Professor of Clinical Psychology, School of Psychology, University of Southampton. Co-investigator: Prof Nisreen Alwan, Associate Professor in Public Health, School of Medicine, University of Southampton. Team: Dr Monica Sood, Dr Elizabeth Taylor, Tina Lang (PPI), Beth Davies (NHS), Sarah Brightwell (Solent Mind), Sandy Bramley (Portsmouth Citizens Advice) Partners: Solent Mind, Hampshire and Isle of Wight Mental Health NHS Trust (Formerly Southern health, IOW and Solent NHS Trusts, ITalk, Talking Change), Southampton & Portsmouth city councils, Hampshire County Council, Portsmouth Citizens Advice. Start: 01/01/2023 End: 30/09/2024 What did we find out? We found that people who were more worried about the cost of living had worse symptoms of depression and anxiety. However, these worries did not cause their symptoms to get better or worse over time. Interviews with staff and service users showed that financial stress caused feelings of hopelessness and frustration. Many people found it harder to get the health care they needed because of money problems. The cost-of-living crisis also increased pressure on the NHS and its staff. Those who are having therapy for Post-Traumatic Stress Disorder don’t benefit as much if they live in a deprived neighborhood. An analysis of 86,000 NHS Talking Therapies referrals from 2021 to 2023 is ongoing. What did we do with this Knowledge? Qualitative interviews have given practical suggestions to improve the link between financial and money advice support locally. Quantitative analysis is ongoing and will be published soon. What are we doing next? Conference presentations have been completed 2 Papers published 2 papers under review. Working on submitting several other papers from the findings for publication. Feeding back results to stakeholders. Publications Neighbourhood socioeconomic deprivation associated with poorer psychological therapy outcomes for PTSD: an audit of a single NHS Talking Therapies (IAPT) service | the Cognitive Behaviour Therapist | Cambridge Core

40fed7f8-d8d0-46f4-80c3-660e33675330 PIVOT: Promoting Increased physical actiVity in hospitalised Older adults with Trained volunteers NIHR Advanced Fellowship Award: Dr Stephen Lim, Honorary Consultant Geriatrician University Hospital Southampton NHS Foundation Trust and Principal Clinical Research Fellow, University of Southampton Team : Dr Samantha Meredith Research Fellow, University of Southampton, Professor Beth Stuart Clinical Trials Co-director of the Pragmatic Trials Unit, Queen Mary University of London, Professor Carl Thompson Applied Health Research, University of Leeds Aim(s) of the research To determine whether hospital volunteers can be trained to engage older people in hospital to be more active. We want to know if this intervention will work in different hospitals and explore factors that will support or prevent it from being delivered successfully. Background to the research Between 30 and 60% of older people in hospital are at risk of losing muscle strength and function, known as deconditioning. This reduces their ability to look after themselves independently. Low physical activity level contributes to deconditioning but dedicated physical activity sessions can benefit older inpatients. In most studies, physical activity is led by paid staff. New ideas are needed to ensure additional physical activity sessions are costeffective and sustainable. The Southampton Mobility Volunteer study showed that trained volunteers can safely engage older inpatients to be more active. However, more information is needed on how to make this approach accessible to more people in more hospitals. Design and methods used Hospital inpatients aged 65 years and older will be invited to participate in the study. We will conduct the study in four hospitals. The hospitals will be different in size and from a wider region to include a range of population groups from different settings and context. This is so that different social groups are represented, and the research will be more representative of the wider population. We will use one hospital as a ‘control site’ – where patients will not get volunteer input – to compare our findings against. Volunteers will encourage participants who can walk independently to walk twice daily. Patients who need help with walking will do bedside exercises. They will be encouraged to walk once they can do so independently. We want to know whether trained volunteer delivered exercise sessions are feasible and acceptable to hospitals. We will determine this by collecting data on volunteer recruitment and training, patient recruitment and the walking/ exercises intervention. We will interview patients, staff, and volunteers as the intervention is delivered to establish what worked well and what could be improved. Other outcomes will include physical abilities, muscle strength, length of stay and readmission rates. We will analyse how much money it costs the NHS to deliver the intervention. Patient/service user, carer and public involvement The James Lind Alliance Priority Setting Partnership has highlighted promoting of independence, and physical and emotional well-being as 2 of the top 3 key research priorities for older adults. More specifically, our PPI research with 92 older people showed that 45% of them had experience with hospital volunteers and all spoke highly of their contribution. Most respondents thought volunteers could be trained to help with mobility. My feasibility study (SoMoVe study) confirmed the volunteer-led intervention was acceptable to patients, volunteers, and staff in one hospital. Patients were grateful that the volunteers encouraged them to be more active. Staff members valued the work of the volunteers. This proposal was developed with the support of 2 public researchers, the volunteer services manager and a hospital therapy lead. The study protocol and study documents will be developed with PPI collaboration. 2 public researchers will be invited to join the study steering group. PPI input will be paid at INVOLVE rates. Dissemination Findings from this study will be shared through conferences, academic papers/reports, and media/social media. In collaboration with the Academic Health Science Network, we will share our findings with commissioners, providers of care and voluntary organisations. Study findings will be of interest to voluntary services, healthcare professionals, and directorate managers. A collection of resources will be produced to encourage the adoption of this intervention in other settings.

Clinical Doctoral Research Fellow and Specialist Research Nurse, Portsmouth < Back How I overcame my fears to win recognition for nurse research Rosalynn Austin Clinical Doctoral Research Fellow and Specialist Research Nurse, Portsmouth For the past 3 years, every year in October, I have a tradition. The call for Early Investigator Awards (EIA) comes out and with the support of my supervisors I submit an abstract. Every year the abstract gets rejected. When I saw the email this year, from the British Society for Heart Failure (BSH), I steeled myself for the traditional annual rejection. The words, “I am delighted to tell you that you have been selected to present at the meeting” jumped off my screen and I double checked to see if it was actually addressed to me. To then learn that my research was the first nurse led research to be shortlisted for this award carried with it a mixture of honour and responsibility. Having attended this conference before I knew my biggest challenge was not the 5-minute presentation, but in explaining burden of treatment to a clinical audience, unfamiliar with this theory. I knew that this was key to them understanding the relevance of my results and increasing the possibility of impacting on their clinical care of heart failure patients. Channelling my inner Florence Nightingale, I wrote and re-wrote my presentation, practicing it multiple times to the cardiology team at Portsmouth Hospitals University NHS Trust. “Never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself.”― Florence Nightingale Nerves before a presentation are normal for me, but on Thursday Dec 2, 2021 my pre-presentation nerves were on a new level. The knowledge that I was the first nurse to be invited to present for this award category in the BSH, had raised the stakes considerably. I wanted honour and represent so many nurse researchers who inspired and supported my journey as a Nurse Researcher. At the coffee break following my presentation, nurses and doctors come up to me and not just comment on my presentation going well, but on how they found it interesting. Better than that they had more questions about burden of treatment and my research. This continued on social media and even now looking back on Thursday evening I can’t help but smile. I felt then that regardless of the announcement of winner announcement on Friday morning, that I had won. I had represented nurse researchers honourably, becoming a trailblazer, inspiring others and creating clinical curiosity around burden of treatment. The announcement ( https://twitter.com/BSHeartFailure/status/1466720998468820994 ), the next day, that I together with Simon Beggs (Cardiology registrar & Honorary clinical lecturer) and Amrit Lota (Cardiology Specialist Registrar, specialising in heart failure and imaging) were to be joint winners cemented those thoughts. I am grateful to my supervisors who supported me in this journey and especially the participants who gave of their time to inform my research. This win is theirs too. To find out more about the winners follow on twitter: @RosalynnAustin @amritlota *Link to the report of the event including the announcement of the winners of the EIA: https://bjcardio.co.uk/2022/01/freedom-from-failure-the-british-society-of-heart-failure-annual-meeting-highlights/ Previous Next

cd5ab336-348b-44b5-a285-82d9866dca9c Adopted Project: ACCESS D: Advancing Community Collaboration and Engagement Strategies in Dementia Collaborators: University of Southampton, University Hospital Southampton NHS Foundation Trust, South Central Ambulance Service (SCAS), University of Sheffield Project team: Patricia Fuller, Andy Claxton, Helen Pocock, Nicola Claxton, Amanda Wollam, Daniel Blackburn, George Devitt, Sarah Fearn, Chris Kipps. Start Date: 14th July 2025 End Date: 13th July 2026 Project Summary Many people are interested in taking part in dementia research but do not know how to get involved, are unsure about what participation would involve, or do not feel that research is for people like them. As a result, studies often struggle to recruit enough participants, and those who do take part may not reflect the wider population. ACCESS D developed and tested a community-based model to make dementia research more visible, accessible, and easier to take part in. Instead of expecting people to come into clinical or university settings, ACCESS D brought research opportunities into familiar community venues and provided real-time support from South Central Ambulance Service (SCAS) research paramedics and nurses. The model was shaped through co-production workshops with public contributors and community stakeholders, which helped define the format, language, and support needed to make research feel approachable and relevant. Early findings show that 71% of participants had not previously heard about research, and 91% reported a positive experience of taking part. Many also said they would be interested in hearing about future dementia research opportunities. These findings suggest that there is substantial hidden interest in dementia research, but that access, visibility, and support are key. ACCESS D shows that recruitment is better understood as a pathway from awareness to participation, rather than a single step. What have we done with our new knowledge? • The findings from ACCESS D are already being used to inform practice, shape discussions with national research infrastructure, and support wider dissemination and future adoption. • First, they provide a practical basis for designing more inclusive recruitment pathways. ACCESS D demonstrates that community-based, supported approaches can reach people who are not engaged through traditional routes, helping research feel more visible, understandable, and relevant. This is particularly important for groups who are currently under-represented in dementia research. • Second, the work is informing discussions with the NIHR Research Delivery Network about alternative approaches to recruitment for NIHR portfolio studies. ACCESS D highlights that recruitment efficiency is not only about identifying eligible participants, but also about creating the conditions in which participation feels possible. This has implications for how recruitment pathways are designed, particularly where studies struggle to recruit to time and target. • Third, the findings are supporting the development of community-based approaches to research delivery that extend beyond conventional clinical settings. This includes exploring how trusted, community-facing services, such as ambulance teams and other outreach services, could help widen access to research. • Fourth, ACCESS D is contributing to the development of practical tools to support wider adoption. This includes co-produced visual materials to help future participants understand research, and a toolkit to help research teams design more inclusive and supported approaches to recruitment. • Finally, the work is being disseminated through academic and practice-focused channels. The study protocol has been published as a preprint and submitted for peer review, helping to make the model visible to wider research and delivery audiences. What next? • ACCESS D has demonstrated early feasibility and is now moving towards wider implementation and further testing. • The next phase will focus on delivering the model across a broader range of teams, settings, and communities, and on understanding its impact on progression into dementia research opportunities. A key question is whether this approach can improve recruitment to time and target in NIHR portfolio studies by reaching people earlier, reducing uncertainty, and reducing avoidable drop-out. • Alongside this, ACCESS D will produce co-produced visual resources, a practical toolkit, and a training approach to support wider adoption. This will help move the work from a single feasibility study towards a transferable model that can be used and adapted by other teams. • ACCESS D has been designed in a way that supports future scalability and transferability. It uses existing trusted workforce roles, adaptable community settings, and low-burden research activities, allowing it to be implemented in different contexts while retaining its core principles. This gives it potential relevance beyond dementia, particularly in areas where research participation is limited by access barriers, uncertainty, or lack of visible routes into research. • Longer term, ACCESS D has the potential to contribute to a more inclusive and efficient model of community-based research delivery, aligned with NIHR priorities around inclusion, decentralised research, and improved recruitment performance. • This next stage is being supported through a staged funding approach, including University of Southampton Public Engagement with Research (PERU) funding for co-produced outputs, and Dementia Translational Research Collaboration (D-TRC) funding for further analysis and development. Earlier pilot delivery was supported through strategic SCRRDN funding.

Rajneesh Kaur and Eloise Radcliffe < Back PPI reflection on experience in attending an academic conference "Prescribing and deprescribing is something we do to patients so their viewpoint does matter." Rajneesh Kaur and Eloise Radcliffe Picture: Kinda Ibrahim, Eloise Radliffe, Nina Fudge, Jalpa and Rajneesh Kaur In September 2024 I attended an International Conference on Deprescribing in France (ICOD2). I'd been looking forward to this event since first coming to know of it about a year before. When registering for the conference it stated that they welcomed all 'researchers, clinicians and teachers in the deprescribing field'. This prompted me to email the organisers to ask if I could attend as a non-healthcare professional. They were very welcoming and reassured me that anyone can attend. I was excited not only to see what was happening at the cutting edge of deprescribing but also because I was going to meet the Southampton team in person for the first time at the conference. We had communicated over Teams before but the conference was a great way to meet each other in person. We recognised each other straight away and were in close company over the two days at the conference. The actual content of the conference reconsolidated a lot of what I had learnt about deprescribing so far. It was great to see leading figures deliver live and to be able to ask questions and have conversations with them. When mingling in the workshops and over lunch, people were interested to gain our perspective — I was attending with a good friend of mine who is also a non-healthcare professional like me, but as she is a solicitor, the healthcare professionals at the conference seemed very interested in the legal angle of deprescribing when speaking to my friend. This legal area does need exploring I feel. The viewpoint of patients and carers seemed like something the healthcare professionals valued, yet I felt it was under-represented in the conference. Prescribing and deprescribing is something we do to patients so their viewpoint does matter. I enjoyed listening to the presentation from David Gardner in particular, who shared a patient's experience, with the patient (George) interacting live on the call. This really brought to life how deprescribing can make a difference. Bringing the patient's perspective forward can bring inspiration and motivation to healthcare professionals to be more comfortable with stepping into the unknown and trying something new. I also appreciated that the conference organisers were trying to be open and ethical about their funding, especially pleased that they were not accepting funding from pharmaceutical companies. This made it seem OK that we didn't have any extravagant lunch arrangements, I'd rather that and keep the soul of the conference alive. Also, my friend and I were humbled and surprised to see that every other person at the conference was a pharmacist. It was almost as if after working with medication so closely, these pharmacists realise the harm as well as the good that medicines can do and therefore have come to the conference to understand and acknowledge the importance and challenges of deprescribing. Although deprescribing should be a part of prescribing, it is practised far less than prescribing. In fact, I would say that the benefits of deprescribing are just now being realised and are not mainstream at all. As a result, it seemed very challenging when I first set out looking for pathways to come off medication safely and only then eventually even came across the term deprescribing. The conference was international and it opened doors to meet people from other countries who were on the same page. I especially remember my encounter with a researcher from Denmark who said something very profound, she explained that it's not the patients that need educating, if we make a safe space where people can be deprescribed from medication — they will come. This researcher had struggles with a loved one who is on medication. This conference was a great platform to network and strengthen beliefs in deprescribing. It was only the second international conference ever held on this topic and I am very much looking forward to ICOD3 Eloise: One of the highlights of attending the International Conference on Deprescribing in Nantes, France, was meeting Rajneesh in-person, our highly valued and very engaged Patient and Public Involvement (PPI) team member. She has been a PPI group member of the ARC Wessex-funded MODIFY study (Medication review and deprescribing intervention for older people living with frailty in primary care) and is now chairing the PPI group for a new ARC Wessex-funded study DOMINO-HF (Deprescribing and medicines optimisation in older people with heart failure). I had previously only met her online and the conference was a great opportunity to talk in-person about the presentations and workshops by international leaders in the field of deprescribing and discuss Rajneesh’s ideas for future projects. The conference was a very welcoming and supportive environment and I would definitely agree with Rajneesh that more patients and caregivers should be represented at the conference, and will hopefully be encouraged to attend and participate in the next one, ICOD3 in 2 years time! Previous Next

5464c879-04a7-47dc-8751-6ab5a9ad6d1c ADOPTED: Incidental Interaction: Novel Technology to Support Elders-as-Athletes through Augmenting Everyday Interactions Lead: Professor M.C Schraefel Team: Professor C T Freeman, Dr M B Warner Start date: October 2022 End date: January 2024 Partner organisations: Abri Different Strokes Southampton Solent NHS Trust Z-Health Performance Solutions Background Elders classically are framed as people who are inevitably getting weaker, losing muscle and bone mass, cognitive capacity, and inevitably requiring care to manage simple "activities of daily living" such as walking, feeding, toileting and bathing. These effects limit their capacity to live independently and healthily in their own homes.To address this decline, research in even just the past five years has been looking for new molecules and therapies to slow or reverse aging, to provide if not longer life, then better quality of life throughout the life course. While these advances in science and technology promise wonders (for those who will be able to afford them), there is already established science that demonstrates how we can all improve our life quality over our lifespan. This same science can, today, improve the life quality of our elders - starting these interventions at any age. It's building strength:a well understood, human practice. No technology is required to build and maintain strength; only to move against gravity. Repeatedly. Research has repeatedly shown that resistance training for elders can improve quality of life while mitigating if not eliminating age associated co-morbidities. And yet, for all its proven effective, cheap - even free - benefits for healthful longevity, many elders are simply too weak to take care of themselves. According to a 2019 report from AgeUk on the State of Elder health, 15% of those aged 65-69, rising to 1 in 3 citizens over 85 in the UK require care.Some of the well-documented challenges to strength building are that, unlike a pill or garment or augmentation, to achieve the benefits of strength, one has to do the work oneself, actively. That takes time, effort, as well as the knowledge, skills and practices to support it. Mustering the effort can be even harder to achieve when one is already feeling weak, recuperating from an injury, a hospital stay, or from loneliness of isolation.The research in this project is specifically designed to address the challenges that keep elders from actively engaging in strength work. Our approach is to co-create interactions to help build the knowledge skills and opportunities to practice to build and preserve the strength needed to maintain healthful independence at home. Our approach is simple: design interactive technology and gestures to leverage what we - including elders - do every day that is already strength work: stand, sit, grip, pull, push, reach, balance - and translate these into activities for building strength. We call it this novel protocol "do it twice." Stand from sitting? That's strength. Do it twice. That's strength building - and that supports the knowledge skills and practice of "elder athletes" building capabilities rather than requiring assistance.Our approach is interdisciplinary: experts in Human Computer Interaction, Sensors and Physiotherapy, developing novel, affordable interactive technologies to make strength practice accessible effective and enjoyable with support to guide these activities, reflect progress, and share with friends. We call the approach "incidental interaction for everyday strength."So far, we have tested the approach for feasibility. In this small project, with our partners in sustainable, assisted living housing, NHS Trusts, professional therapy and coaching, and with participating elders as co-designers, we will be refining the interaction, the sensors and the exercise protocols. We will be able to tune our work at each stage to ensure best engagement. In three phases from design, to testing, to in-home evaluations we will together be validating the accessibility and efficacy of our approach.By realizing with this project the potential our preliminary work indicates and that our partners anticipate, we will contribute a new affordable breakthrough approach to help transform elder health and care, to enable longer, stronger elder independence@home.

e8875589-cdeb-4504-8e6c-2c5922e46645 ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care. ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care. Principal Investigator: Dr Katherine Morton, Senior Research Fellow Team: Dr Gillian Crawford, Consultant Genetic Counsellor, University Hospital Southampton NHS Foundation Trust, Dr Lucy Side, Consultant and Lead Clinician in Clinical Genetics, University Hospital Southampton NHS Foundation Trust, Dr Jackie Chandler, Evaluation Programme Manager (Qualitative), Wessex Academic Health Science Network, Dr Kate Lippiett, Senior Research Fellow, Wessex Cancer Alliance, Prof Diana Eccles, Dean of Medicine, Professor of Cancer Genetics, Faculty of Medicine, University Hospital Southampton, Prof Claire Foster, Professor of Psychosocial Oncology, University of Southampton, Mrs Lesley Turner, Patient and Public Involvement contributor, Ms Kelly Kohut, Consultant Genetic Counsellor, St George’s University Hospitals NHS Foundation Trust Start date: 1 May 2022 End date: 1 May 2024 Background The demand for genetic testing for inherited cancer susceptibility is rising and services are increasingly being provided in mainstream care. In Wessex last year, more than 180 genetic tests were offered to cancer patients in mainstream care, and this will increase in 2022 as more genetic services become mainstreamed and eligibility criteria are expanded. This means that genetic testing is offered by clinicians such as oncologists, surgeons and cancer nurse specialists rather than Clinical Genetic services. It is part of a move to routinely offer genetic testing to all cancer patients where there may be clinical benefit. The results of genetic testing can improve health outcomes by informing optimal treatment pathways and facilitating cancer prevention or early detection in family members. However, deciding whether to have genetic testing is a complex, personal decision with potentially life-changing implications for the patient and family. Many people with cancer are faced with this decision shortly after diagnosis, at an already stressful time. Without the support of specialist genetic counsellors to discuss the medical, psychological and social consequences of genetic testing, it is essential that these patients are given accessible and appropriate support as a complement to clinical conversations. Mainstream clinicians feel they lack the necessary skills and time to support patients in this complex decision process. Web-based decision aids could offer an effective solution, giving patients the flexibility to reflect on and discuss information about genetic testing in their own time, in light of their own personal values. Breast Cancer Choices is one such web-based decision aid which was developed through a two-year research project funded by Breast Cancer Now involving extensive patient input and a review of evidence. By evaluating the implementation of Breast Cancer Choices in mainstream services, we would not only provide improved support to breast cancer patients currently undergoing this difficult process, but also identify wider-reaching implications regarding how best to support patients with other cancers in the national move towards genetic testing. As 1 in 2 people in the UK are expected to develop cancer in their lifetime, with 5-10% of these cancers estimated to be due to inherited predisposition, a clear implementation strategy for mainstream genetic testing is essential. Overall, the project aims to evaluate the impact of Breast Cancer Choices on patient’s decision making and clinician experiences in mainstream care, and to understand how web-based decision aids can be effectively implemented across mainstream cancer 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

< Back Our journey in partnership Why Pat and Julia became involved in research Pat Walkington and Julia Burton have been working with researchers from across England as part of a National Priority Research Programme in Ageing, Dementia and Frailty . The programme is a collaboration between ARCs which has been working to improve care for people with dementia and prevent falls in older people. Pat and Julia were supported in their work with researchers by Vikki and Naomi from the University of Exeter as part of ARC South West Peninsula, The overall programme had been initially led by Professor Helen Roberts based in Southampton as part of the ARC Wessex. Five years later, Pat and Julia have reflected on their continuing work: Pat writes: I have been a member of the public and community involvement and engagement panel for the Applied Research Collaboration (ARC) for Greater Manchester for about 12 years and later also became a member of the Health Innovation Greater Manchester panel. I have worked on many different health research projects where I have been able to offer a public/patient perspective. This includes writing plain English summaries for funding bids, sitting on advisory panels, being involved in different workshops and focus groups in my community as well as advising on information leaflets for the public. In November 2020, I was asked to review funding bids for Healthy Ageing, Dementia and Frailty National Priority Areas. Normally my involvement would end here but then in 2022 when a public panel member for the ongoing projects retired, I was invited to join the Programme Management Group overseeing the 3 projects. I was welcomed by the team, helped to be brought quickly up to speed with progress so that I felt comfortable and valued as part of the team. The meetings were well-managed and, like Julia, I felt comfortable about asking questions, asking for clarification if there was something that I didn’t understand, and being able to give a patient/public perspective. I valued the support of Vikki Goodwin and Naomi Morley , the PPI lead members of staff, who offered to meet with Julia and me before and after the Programme Management Group meetings so that we could get to know each other, discuss progress, ask questions and share ideas. This was a positive experience which I have now asked to be introduced to similar work Greater Manchester. I had never heard of a Community of Practice so this was a new and interesting learning experience for me. Like Julia, I found this so valuable in being able to openly discuss project progress, ideas and issues with other PPI teams working on similar projects across the ARCs in different areas of the country. I was disappointed when funding for this ended and our work could not continue. However, now that I know that Communities of Practice can be so valuable I would not hesitate to encourage these to be set up for other research projects. Finally, I am also involved as a PPI member/research partner in one of the 3 projects, the Flexi (Falls Exercise Implementation) Study, in Greater Manchester. This has been another learning experience for me from writing the plain English summary and working on the funding bid, being an equal partner, to now being involved in PPI workshops with members of the public who have taken part in the exercise classes. This morning we were listening to their ideas for public leaflets for the project extension and the positive experiences of how much stronger, fitter and confident that they felt from doing the exercises. They also said how much they had enjoyed the social aspects of exercising together. Pat Walkington public contributor I feel that as a PPI member I have made a difference and I have been able to give something back to the society and health service that has supported me. Julia: I have been involved as a patient/public contributor since the very start and, supported by Vikki Goodwin and Naomi Morley (Exeter), have been enabled to contribute at every stage. I attended all the very regular management team meetings where it was very clear that Helen Roberts valued our input and ensured that the meetings were run in a way that made the content accessible to non-academics like me. Julia Burton public contributor I do have some years of public patient involvement and co-production in research, initially volunteering with the Alzheimer’s Society with lived experience of my mother’s dementia, but terminology, acronyms and on occasions, scientific content can need explanation. It was very interesting to be involved in the programme of three research projects that are aimed at providing interventions for my age group. In my opinion, a very valuable and positive experience was the Community of Practice where the three funded project leaders and PPI leads met outside of the Management Group. Set up by the Management Group and facilitated by Naomi Morley we had regular meetings where issues involved in the progression of the research were discussed together and information, support, contacts and ideas shared. This community became more useful as time went on and resulted in cooperation and problem solving across the ARC s as the three projects were addressing the same NIHR priority. I was disappointed when the funding for this was not extended although Pat Walkington and myself are still involved in the management group. PPI contribution can be seen as a respected part of the entire programme. This was highlighted when Naomi, Pat and I spoke about patient and public involvement across the programme and development of a community of practice at the British Geriatrics Society Autumn Conference in November 2023. We were the only public contributors at the conference and I hope we were pioneers to be followed by others in the future. Previous Next

e57a4343-00e9-4e08-9056-d084e47c8870 Reframing responsibility through public empowerment: examining environmental cues influencing poor diet Team Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences, University of Southampton. Dr Lyn Ellett. Associate Professor of Clinical Psychology. School of Psychology. University of Southampton. Prof Mari Carmen Portillo. Professor of Long-Term Conditions. School of Health Sciences University of Southampton. Prof Janis Baird. Professor of Public Health and Epidemiology, MRC Lifecourse Epidemiology Centre, University of Southampton. Prof Christina Vogel. Deputy Director, Centre for Food Policy City, University of London. Rachael Eckford, Occupational Therapist Partners Dr Lindsay Welch. Clinical associate professor at the University of Bournemouth. Previous Program Lead Health Inequalities (Health Innovation Wessex) Start: 27th February 2023 End: 30th September 2024 What's the issue? The United Kingdom (UK) consumes the most ultra-processed diet of any country studied in Europe. This scenario indicates that poor diets have become normalised in this country. Consequently, there has been a dramatic increase in diet-related conditions, such as obesity, type 2 diabetes, cardiovascular disease or several types of cancer and the financial costs attached to them. The UK food system is a complex setting for individuals to navigate. Individuals choose which foods to purchase and eat based on many determining factors (both internal and external). Our food environment has changed in the last 50 years and the term ‘obesogenic environment’ is now used to describe some of our food environments. Obesogenic environment meaning a setting which encourages weight gain and discourages weight loss by making unhealthy foods readily available. The environment we live in is a large factor for determining our food choices and poor-quality diets cluster in disadvantaged groups, for example those with low levels of education, low incomes or living in deprived areas. Responsibility for our food choices is culturally framed on the individual What did we find? I n the ARC Wessex project ‘ Reframing responsibility through public empowerment: examining environmental cues influencing poor diets ’ we completed a review of thirty-six articles. Studies exploring public perceptions of poor diets acknowledged personal and broader systems drivers, with individual responsibility predominating across studies. Research analysing media portrayals showed similar patterns of individual responsibility among right-leaning newspapers, which focused on individual lifestyle changes. However, left-wing newspapers highlighted the role of the food industry and the government. Studies analysing government policies identified citizens as the primary agents of change through rational decision-making. Policies and media portrayals provided limited emphasis on these populations, with individual responsibility narratives prevailing. Following this review, we undertook a qualitative study with 15 individuals with obesity/overweight exploring their perceptions of responsibility for poor food diets, with particular attention to how individuals understood and positioned personal and environmental influences on food practices. Our findings highlighted that despite food choice being complex and having many external and internal factors, the public perception has been framed to hold the individual accountable for their food choices. There is consensus that lifestyle factors alone will not fix the problem of obesity and therefore individuals being ultimately responsible for their diets is not the solution. NIHR ARC Wessex supported this project, enhancing opportunities for dissemination, implementation and networking with key local authorities and organisations. We expect our findings to raise awareness of good food choices and the development of tools that could support community care of people with obesity or at high risk of obesity. Further policy work is needed to address the root causes of diet-related health inequalities to implement mandatory regulatory frameworks that set standards for commercial practices. Developing tools to raise awareness of poor diet choices and increase informed decisions Research papers and books Serrano-Fuentes N, Rogers A, Portillo MC. Beyond individual responsibility: Exploring lay understandings of the contribution of environments on personal trajectories of obesity. PLoS One. 2024 May 8;19(5):e0302927. doi: 10.1371/journal.pone.0302927. Serrano-Fuentes N, Ellett L, Vogel C, Baird J, Tavares N, Portillo MC. Mapping how responsibility for poor diets is framed in the United Kingdom: a scoping review. Public Health Nutrition. 2025;28(1):e167. doi:10.1017/S1368980025101079

f5788d42-1d65-4ac1-a9d5-00a8fcb316fd Improving support for self-management (WASP) Using the Wessex Activation and Self-Management and Personalisation (WASP) Tool to design and implement system wide improvements in self-management support for people with long-term conditions See the WASP website https://www.wasp.soton.ac.uk/ Principal Investigator: Professor Mari-Carmen Portillo Team members: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions, School of Health Sciences, University of Southampton), Dr Hayden Kirk (Consultant Physiotherapist & Clinical Director Adults Southampton, Solent NHS Trust), Dr Chris Allen (Lecturer, School of Health Sciences, University of Southampton), Stephanie Heath (WASP Clinical Lead, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Dr Louise Johnson (WASP Project Manager, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust), Dr David Kryl (Director, Centre for Implementation Science, University of Southampton), Professor Alison Richardson (Professor of Cancer Nursing and End of Life Care, University of Southampton) Start: 1 October 2019 Ends: 30 September 2024 Project Partners: Solent NHS Trust, Royal Bournemouth & Christchurch Hospitals NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS Summary Good health and health care are key to a flourishing society. Focussing on what matters most to patients is essential for accessible, equitable and efficient care. In an NHS that is facing many challenges - including an increasing prevalence of multimorbidity and high levels of workforce burnout - this is easier said than done. The Wessex Academy for Skills in Personalised Care (WASP) has developed a programme to facilitate adoption of personalised care in practice. Led by the University of Southampton in partnership with NHS organisations across the Southeast, this programme supports health and social care services to embed personalised care practices – through rigorous evaluation, training, and bespoke improvement initiatives. Research is underway to evaluate the impact of the programme, and to understand how it could be spread and scaled. If adopted nationally, this programme has potential to be the catalyst for changing how we deliver and sustain services across the NHS. Impact People with multiple long-term conditions (MLTC) represent a significant proportion of the primary care population; with an estimated 14 million in England living with two or more chronic conditions. Many experience high treatment burden, fragmented care and reduced quality of life. While national policy promotes personalised care, implementation at scale has proved challenging. Services often lack the tools, skills and system support needed to embed personalised approaches into everyday practice. Difficulties in defining and measuring personalised care, add further challenge. The Wessex Academy for Skills in Personalised Care (WASP) was established to address this gap. Funded and commissioned by Hampshire and Isle of Wight and Dorset Integrated Care Boards (>£710K), WASP has developed an evaluation and training approach, focused on cultural and system-level change rather than isolated interventions. Led by the University of Southampton and working in close partnership with NHS organisations, WASP supports health and social care services to embed personalised care in a sustainable way. Training is accredited by the Personalised Care Institute and WASP is a partner with the Coalition for Personalised Care. Being hosted within NIHR ARC Wessex has enabled WASP to bring together research expertise, service improvement skills and frontline clinical experience. This collaboration underpins a structured programme built around three core elements: evaluating current practice, building skills through accredited training, and supporting services to make sustained improvements. A co-produced service evaluation tool enables teams to reflect on how personalised care is experienced by staff, service users and the wider system; enabling understanding of not just what happens in practice, but why. Training builds staff confidence and capability, while improvement support helps translate learning into measurable change. This work has had broad impact. To date, 45 clinical services across Hampshire, the Isle of Wight, Dorset and Sussex have completed the WASP programme. Over 1,400 healthcare staff have taken part in training, and more than 2,000 people, including clinicians, managers, commissioners and service users, have engaged with the service evaluation. Teams report shifts in mindset, with greater focus on “what matters” to individuals and increased confidence in delivering flexible, responsive care. People using services benefit from care that better reflects their priorities and circumstances, while staff gain shared language, clearer frameworks and practical tools. Commissioners and system leaders benefit from robust evidence to guide investment and improvement. WASP has also influenced practice beyond participating services, contributing to NHS England South East guidance; providing regional leadership on Patient Activation Measure use for NHS England; and contributing to ICB values-based care steering boards. NIHR ARC Wessex has been critical in enabling this impact by supporting programme development, evaluation and dissemination. ARC infrastructure has provided methodological and statistical expertise, mentorship, impact capture guidance and communications support, enhancing credibility and enabling scale-up. Through ARC Wessex, WASP accessed expertise across the University of Southampton, including business intelligence and the Business School, securing two development grants in 2023: the Southampton Enterprise Development Fund (£8,550) and Higher Education Innovation Fund (£10,000). Engagement has also taken place through WASP conferences in 2023 and 2024, with over 100 delegates including clinicians, commissioners and national policy stakeholders. The team is now collaborating with colleagues from UCL, Bristol, Leeds and Exeter to develop a programme grant focused on a scalable and sustainable personalised care intervention. This partnership demonstrates how NIHR investment can translate evidence into meaningful improvements for people living with long-term conditions. “It was good that we were able to focus on how shared decision making can work for continuing healthcare joint working on assessing challenges and positives- in a structured way. The idea of the need was there, and it helped to provide the framework to address the need ” [Programme Participant] https://www.wasp.soton.ac.uk/ We have now held 3 regional conferences, with attendance from 100+ delegates and a range of regional and national speakers – photos can be found on the conference page of our website. https://www.linkedin.com/company/wessex-academy-for-skills-in-personalised-care A scoping review followed this project to provide the rationale for the WASP assessment tool of personalised care practices – this has now been published: Johnson et al (2025) Next? WASP II is now evaluating and collecting evidence of the impact of the Wessex Academy for Personalised Care programme. We are conducting a secondary data analysis on existing WASP survey data, to better understand the behavioral factors impacting personalised care practices. We are seeking for further NHS teams to complete the training beyond Wessex. We are planning an NIHR PGfAR Submission in April 2026 – focussing on sustainable and scalable development and national evaluation of the programme. We are collaborating with UCL, Bristol, Leeds and Exeter, as well as the Personalised Care Institute. Now there's a series of FREE webinars to develop skills supporting personalised care, for health and care professionals in the Isle of Wight, Hampshire. More here

db1daab2-c480-4960-beba-7955afeebc20 Wessex Frail2Fit – A feasibility and acceptability study of a virtual multi-modal intervention delivered by volunteers to improve functional outcomes of older adults with COVID-19 discharged from hospital Lay project title: Can we train volunteers to deliver exercise and nutrition support to older adults with frailty after a hospital stay? Project Partners: University of Southampton; University Hospital Southampton NHS Foundation Trust; Bournemouth University; Swansea University Principal Investigator: Dr Stephen Lim Team members: Dr Stephen Lim ( NIHR Clinical Lecturer in Geriatric Medicine, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Samantha Meredith ( Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton ), Professor Mike Grocott ( Professor of Anaesthesia & Critical Care, Clinical and Experimental Science, University of Southampton), Professor Sandy Jack (Consultant Clinical Scientist in Anaesthesia and Critical Care, University Hospital Southampton NHS FT), Professor Jane Murphy (Professor of Nutrition, Ageing and Dementia Research Centre, Bournemouth University), Dr Judit Varkonyi-Sepp (Chartered Psychologist, Manager Behavioural Science Theme, NIHR Biomedical Research Centre, University of Southampton), Andrew Bates (Clinical Academic Intensive Care Nurse and Critical Care, Clinical and Experimental Science, University of Southampton), Luisa Holt (Physiotherapist, Research Fellow, University of Southampton), Professor Kelly Mackintosh (Professor in Sport and Exercise Sciences, Swansea University), Professor Melitta McNarry (Professor in Sport and Exercise Sciences, Swansea University), Cynthia Russell (patient representative), Steph Keith (Volunteer services - Patient Support Hub Coordinator), Kieran Fifield (Volunteer services - Project Support Officer) Start: 31/10/2022 Ended: 10/01/2024 Lay Summary Around half of older people over the age of 65 in hospital are affected by frailty. Frailty is a long-term health condition where your body loses its natural reserves. People with frailty take longer to bounce back from simple things, like a common cold, they tire easily, and need a bit more help to do things. Exercise and good nutrition are important to build strength in older people with frailty and can help them to perform their normal daily activities, like dressing, or cooking a meal. However, the motivation to eat well and to move more after a hospital stay can be hard for many older adults living with frailty. We found that we could train volunteers to encourage older people with frailty to eat well and exercise after a hospital stay. Hospital volunteers were trained by a health professional to deliver 3-month support to older people online through Zoom, or over the telephone. Five hospital volunteers completed the training. The volunteers were college students (3 female) with an average age of 16 years and were interested in gaining experiences working in a health setting. The exercises were seated strength movements using resistance bands. Volunteers were also taught to use the ‘nutrition wheel’ which is a tool to help start conversations with older people about their eating and whether they had lost any weight. Older people who were identified as at risk of undernutrition (not getting enough nutrients to support their health) were given booklets containing suitable nutrition advice. Twenty-seven older people with frailty signed up to receive support from the volunteers, and seventeen completed the 3-month programme. Eight older people completed the intervention online, and 9 opted for telephone support. The volunteers delivered 45 online sessions and 90 telephone calls from January 2023 to October 2023. After the programme we found that older peoples’ physical activity levels, quality of life, and appetite improved, and they maintained these improvements at 3-month follow-up. Only 1 minor incident happened during exercise where an older person strained their shoulder muscle using the resistance band. We interviewed volunteers, older adults, and their carers to find out more about what they thought of the exercise and nutrition support. Participants completing the online sessions enjoyed the group interactions and described the sessions like ‘a virtual cuddle’. They appreciated the support of the younger volunteers, who helped motivate and guide their exercise and nutrition behaviours. Participants receiving support through weekly telephone calls felt the volunteers were very encouraging and provided non-judgmental support. Overall, participants thought the online sessions helped build a better exercise routine, but the one-to-one telephone calls allowed more in-depth, personal conversations around nutrition. The young volunteers found listening to some of the illness stories of older people leaving hospital quite emotionally difficult. But they found the experience changed their perceptions on ageing. The volunteers had support from the trainer to help with any challenging conversations. Some older people found a key barrier to participating in the programme was their unmet care needs. Older people with better social care had resources to focus on their health, whereas older people who were alone and unsupported were more focussed on meeting their basic care needs rather than participating in the support programme. Overall, it was safe and feasible for volunteers to deliver exercise and nutrition support to older people living with frailty after a hospital stay. What we did with the new knowledge Our findings are helping to develop a volunteer toolkit, including recruitment packages, and training and support materials for future volunteer-led projects in hospital and in the community. Where next? We are working with various Universities and community organisations to develop a volunteer-led intervention to improve health and wellbeing of older people in different regions and for older people from diverse ethnic backgrounds. What did people say about the work? Volunteer: “It (training) was very thorough, and I knew what I had to do when I first started. Especially at the beginning, when I was invited to join one of the zoom sessions, to see the volunteer delivering the exercises. And also, the nutrition support; that was really helpful to understand how everything worked. Not only how it was meant to, but how someone delivered it. I thought the training was amazing, and I felt comfortable with what I was doing when I first started.” Participant receiving telephone support: “ What was very good was they (volunteers) didn’t push it too much. When I said I exercise 3 times a week, they didn’t push that and say, ‘oh, you should be doing this; you should be doing that’ - they didn’t push anything… They just encouraged you, which was good…. They were polite, finding out what I’d been doing, and what I hadn’t been doing I s’pose but not criticising me for not doing it… They’re concerned about you, getting people back to normal, aint they?” Participant receiving online support: “ I enjoyed doing the one online. It was interesting talking to people to see what other people were feeling and how they were all doing…. You sort of get that feeling that you’re part of something… it was fun. Strangely enough, I would find myself looking forward to the next one…” Participant receiving online support: “ Full of enthusiasm.. They (volunteers) weren’t just telling you what to do, they were rooting for you too, ‘come on, we can do this!” Publications Frail2Fit study protocol: a feasibility and acceptability study of a virtual multimodal intervention delivered by volunteers to improve functional outcomes in older adults with frailty after discharge from hospital | BMJ Open