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894e3c82-d20e-4fbc-a56a-7d96277ba61e PARTNERS Project: Development and implementation of a digital tool for multisectoral support and management of long-term condition PARTNERS Project: Development and implementation of a digital tool for multisectoralsupport and management of long-term condition Principal Investigator: Professor Mari-Carmen Portillo Co Applicants : Line Bragstad, Dr Dorit Kunkel, Dr Kat Bradbury, Dr Lindsay Welch, Hayden Kirk, Dr Caroline Barker, Sandra Bartolomeu Pires, Christopher Edwards, Lindsay Cherry, Francesca White, Caroline Aylott, Cathal Doyle. Partners: University of Southampton, University of Oslo, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Hampshire and Isle of Wight ICS, Versus Arthritis, and Parkinson’s UK. Lay Summary Background to the research : Self-management is an approach to help people with long term conditions manage their health daily. Existing NHS self-management tools focus on healthcare (medication management, appointments) and fail to capture aspects of how people live with and adjust to long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups.We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and their family/carers. This intervention recognises the role of social support, voluntary sector, industry, and community groups in adjusting to living with a condition. Our next step is toadapt this intervention to the needs of people living with other conditions like Arthritis and for those living with more than one condition and create a digital tool. Aim of the research : To develop, implement and evaluate a digital tool that supports the management of people with Parkinson’s Disease and/or Arthritis. The tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able toaccess available resources and support). We will : 1. Work with our patient and public involvement (PPI) representatives, relevant voluntary organisations, health and social care providers, and key people involved in policy making and NHS strategy. They will have a voice ineach decision to ensure our tool is relevant and acceptable to those using it. 2. Host discussion groups with people with Parkinson’s Disease and/or Arthritis and theirfamily/carers to understand the positive and negative aspects of existing digital tools, from a patient perspective. 3. Design our self-management tool. 4. Test the tool through two primary care surgeries (GP) and voluntary organisations (Parkinson’s UK and Versus Arthritis).Testing will help understand how the tool is used and what helps or hinders its success. Deliverables : The research will generate: a digital tool to support more effective self-management of Parkinson’s Disease and/or Arthritis, recommendations for policy development, evidence for how to improve NHS services. Public Patient Involvement: We willwork with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to define their level of involvement, roles, methods to input and training needs. We will also explore what works best or what we should do differently intheir involvement. Dissemination : We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters, and public events. What did we find out? We found that people with Parkinson’s and/or arthritis, their carers and professionals involved in their care wanted a digital app that was: • Simple • Easy to navigate • Hybrid – in person contact also signposted Included: • Community resources from voluntary/charity sector • Free or inexpensive resources • Links to peers/buddy for support What next? PARTNERS 2 has evolved, as a continuation project. This allowed time for: A suitable digital company to be found with previous experience of working with people with health condition Full briefing of the digital company about what was required of the digital web app. Development of a 'Life Boost' app Trade marking 'Life Boost' Real-world evaluation of the app with Social Prescribers in Hampshire Linking 'Life Boost' to MyMedical Record (University Hospital Southampton NHS Foundation Trust) The PARTNERS 2 project will now: Ga in full exposure by having it adopted onto the My Medical Record platform at the University Hospital Southampton NHS Foundation Trust Be used in the real-world and a business/company/organisation will be sought to adopt the app for further development and management

Research Fellow < Back Stephanie Hughes Research Fellow Ageing and Dementia Steph Hughes is a Research Fellow in the ARC Wessex Mental Health Hub at The University of Southampton conducting research into alcohol use disorder in older adults. Steph has a PhD from The University of Southampton where she explored the impact of significant others on men undergoing active surveillance for prostate cancer. Steph has expertise in qualitative research, self-management of illness and intervention development. Past projects span topics such as irritable bowel syndrome, chronic pain, weight management and primary care communication. Previous Next

9ae71e9b-aaf2-477f-a174-17b115a2513a ADOPTED PROJECT: Neuro LTC: Assessing Baseline Factors, Critical Events and Fatigue in Long Term Neurological Conditions Principal Investigator: Dr Chris Kipps, Neurologist and Hon Senior Lecturer, University of Southampton Team Members: Dr Helen Roberts Veena Agarwal Dr John Spreadbury Dr Emma Stack Dr Sarah Fearn Prof. Ann Ashburn Start Date: 23/08/17 End Date: 31/12/22 Project Funder: University Hospital Southampton NHS Foundation Trust Lay Summary Many neurological conditions have a long-term impact on quality of life with varying requirements for intervention and care over time. This has the potential to create a mismatch between the needs of patients at particular stages in their illness, and the skill levels of clinicians and available resources required to assist them appropriately. This project aims to identify the factors that influence everyday care requirements (baseline factors) and to identify the critical events that have the potential to lead to an increase in care requirements. In many neurological conditions, there may also be ‘hidden’, less evident or more subjectively perceived factors that influence care requirements, of which fatigue may be amongst the most common. Thus, this project also includes research into the prevalence and effects of fatigue in neurological conditions. By identifying and better understanding baseline factors, critical events and the features of fatigue in long term neurological conditions, this project will help to enable future research to stratify long-term neurological conditions by the degree of complexity and individual burden and match service users more effectively to appropriate clinical and social care resources. Method The research will focus on the following five neurological conditions: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, and Parkinson's disease. The study will involve the use of mixed methods. We will use surveys and focus groups with service users (patients and caregivers) to identify the factors that help to maintain an individual’s optimal level of living with the neurological condition (baseline factors), the critical events that can cause a change in care requirements in each of the five neurological conditions, and the impact of fatigue. What did we learn? 1. What factors affect the care that people living with a neurological condition require? We found that mobility was the most important factor for assessing care needs from the patient perspective. This was followed by dexterity, eating and drinking, speech and communication, cognitive impairment and mental health. This order of relative importance was found to be constant by age, disease progression, gender, living alone, or presence of co-morbidities. However, younger patients, more progressed patients, females, those living alone and those with co-morbidities tended to produce higher average scores of importance, meaning they felt their symptoms in these areas had a higher impact on their care needs. We asked participants what helped them to manage their condition and live well. The most important factors were: Social support, exercise, lifestyle factors and supportive equipment. Less recognised factors such as access to healthcare professionals, the patient’s mentality and diet were also noted. We found that recently diagnosed patients cited ‘employment’ and ‘feeling informed’ more frequently, whilst less recently diagnosed patients mentioned ‘having a carer’ and ‘getting out of the house’ more frequently. 2. What events lead to an unplanned GP or hospital visit for people living with a neurological condition? We found that there are specific events that are likely to lead to an unplanned GP or hospital visit for people with neurological conditions. In addition to well-recognised causes of crisis such as falls, trigger events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised trigger events tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. Patient and carer responses indicated a good general knowledge of potential crisis triggers. Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications. 3. What is the frequency and impact of fatigue for people living with neurological conditions? We found that the prevalence of clinically significant fatigue across five neurological conditions (Parkinson’s, MS, epilepsy, MND and Huntington’s disease) was 51%. The highest prevalence of fatigue was amongst people with MS and MND, and lowest was amongst people with epilepsy. More than a third of participants reported that fatigue frequently impacted their social life and ability to concentrate. Factors associated with clinically significant fatigue were male gender, age, frequency of fatigue greater than twice a week and fatigue often having a detrimental effect on social life. What difference can this new knowledge make? Understanding the factors that affect the care needs of people living with neurological conditions can help to ensure care resources are targeted at those most at risk of high care needs. Understanding that younger patients, more progressed patients, females, those living alone and those with co-morbidities generally considered their symptoms to have a higher impact on their care needs, can allow us to target these patients with relevant support and interventions. Identifying the most important factors for people with neurological conditions to self-manage their conditions and live well can enable us to share this information more widely and promote self-management tools and techniques amongst this population. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that Patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. By increasing understanding of events that lead to a GP or hospital visit, we can better inform strategies to prevent them. Similarly, by identifying under-recognised crisis triggers we can build a better understanding of ‘risk factors’ for an unplanned GP visit or hospital admission. Identifying that patients were more aware of mental health issues, and carers were more aware of cognitive impairment and issues with medications means that we can ensure healthcare professionals are asking the right questions to the right person. We also noted some differences in how patients and clinicians describe the events that precede a GP or hospital visit. This can help to ensure healthcare professionals are using the right language when assessing the risk of individual patients. Why is this important? The number of people with a neurological condition is rising, with around 17 million cases in the UK. Approximately 4% of NHS funding goes to neurology care. People with a neurological condition are more at risk of unplanned hospital visits and admissions than many other groups. Identifying factors that promote self-management and well-being could improve patient diagnosis and quality of life, reducing care requirements from the NHS. Reducing unplanned GP and hospital visits could improve patient quality of life and reduce resources spent by the NHS. Identifying the frequency and impact of fatigue and ways to manage it could improve patient and reduce resources spent by the NHS. What Next? We have already taken some of the findings from this study to: -Publish academic publications -Present at medical conferences -Present to groups of people with neurological conditions -Present to national support organisations -Create an impact inventory for neurological pathways -Create questionnaires that aim to identify those most at risk of an unplanned GP or hospital visit (implemented through My Medical Record) We are continuing to analyse the data and disseminate findings to a wide audience. Publications The Causes and Impact of Crisis for People with Parkinson’s Disease: A Patient and Carer Perspective - Sarah Fearn, Sandra Bartolomeu Pires, Veena Agarwal, Helen C. Roberts, John Spreadbury, Christopher Kipps, 2021

c8454e17-14f6-4e3b-b8ba-8a5db14fcdcd Gambling and Alcohol Use Addiction in Military Veterans Chief Investigator: Professor Sam Chamberlain , Head of Department, Department of Psychiatry, Faculty of Medicine, University of Southampton; Honorary Consultant Psychiatrist and Service Director, Southern Gambling Clinic, Hampshire and Isle of Wight Healthcare NHS Foundation Trust; Mental Health Research Hub Lead, ARC Wessex, University of Southampton; Sam.chamberlain@soton.ac.uk Co-Investigators: · Dr Skaiste Linceviciute , Research Fellow, ARC Wessex, University of Southampton; s.linceviciute@soton.ac.uk · Dr Konstantinos Ioannidis , Consultant Psychiatrist and Clinical Lead of the Southern Gambling Service, Hampshire and Isle of Wight Healthcare NHS Foundation Trust; Honorary Associate Professor at the Department of Psychiatry, Faculty of Medicine, University of Southampton; k.ioannidis@soton.ac.uk Partners: Dorset Integrated Care Board, Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, Southampton City Council, Health Innovation Wessex, CNWL NHS Trust, National NHS Gambling Clinic London, Avon and Wiltshire Partnership NHS Foundation Trust, South West NHS Gambling Service, Swansea University, Gambling in Armed Forces research group, Royal Navy, Southampton City Council, Stronger Communities, Southampton Armed Forces Covenant, Eling Royal British Legion branch, Southampton Voluntary Services, HIOWH NHS Armed Forces Network, The Society of St James, Parent Support Link, Veterans Outreach Support. Start: 1 December 2024 End: 31 March 2026 Summary Military veterans are more likely to develop gambling problems than the general public, but far fewer seek help than expected. In the Wessex region there are over 100,000 serving/retired military personnel, yet, our regional addiction services report low levels of veteran personnel referrals. While there may be several barriers stopping veterans from getting help, many veterans might reach a crisis point showing the urgent need for action. Informed by extensive stakeholder consultation with regional addiction services, individuals with lived experience and training, and with experts from the Armed Forces community, a need has emerged to carry out explorative research and community partnership building on understanding the extent of engagement in accessing treatment and support for gambling with/without alcohol problems for military veterans and learn how this knowledge can enable improvement in this area. To date we have: 1. Brought together an engaged and active stakeholder group of experts by experience and training in this field; including veterans, family members of those affected, representatives from veteran charities and groups, the wider support services for the Armed Forces community, and academics who informed our research planning and supported engagement. 2. Public and community involvement was an embodied element in this study that guided decision making and supported multidisciplinary partnership building in the wider community. In response to lower rates of participation, we have undertaken additional PPIE engagement activities to understand the underlying barriers and challenges in health research recruitment and retention that affects this population. This included flexible, multi-modal approach of engagement that identified recommendations for how researchers could better engage with military veterans. 3. We are interviewing military veterans with a lived experience of gambling problems to explore gambling treatment and support-seeking experiences, both successful and unsuccessful, across diverse veterans population in Wessex. By identifying common thematic experiences of this group, we aim to provide a deeper understanding of the lived experience with gambling problems and help-seeking in military veterans, and offer insights for region services supporting this population. These strands of work are supporting necessary evidence gathering and partnership infrastructure building which are needed for informing the planning of further work in this area.

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.

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

9786dc43-811c-409a-95aa-666af8766d3d ADOPTED PROJECT: Developing and testing a Patient Report Experience Measure for patients accessing Acute OnCology services: The PREMAC study Principal Investigator : Dr Richard Wagland, Senior Research Fellow, University of Southampton, School of Health Sciences Co-Investigators : Professor Alison Richardson, Professor of Cancer Nursing & End of Life Care and Director of NIHR ARC Wessex, University of Southampton & University Hospital Southampton John Defty, Advanced Clinical Practitioner in Cancer Care, University Hospital Southampton Dr Emma Brown, Medical Oncologist, Acute Oncology Lead. University Hospital Southampton Start date : January 2023 End Date: May 2024 Funder : University Hospitals Southampton (UHS) NHS Foundation Trust R&D Small Grants Award Summary People with cancer often need to access acute oncology services for serious problems caused by their disease or treatment. It is good practice for services to collect information about patients’ experiences of care to understand how they could be improved. The aim of the PREMAC study was to develop a questionnaire for patients who have used acute oncology services to feedback their experiences. The study progressed in three stages. First, a literature review to identify previous research that described elements of care important to people with cancer whilst experiencing a cancer emergency. This was followed by interviews with eight patients who had cancer and eight doctors and nurses from the acute oncology team at Southampton General Hospital to hear their thoughts about the most important elements of care. From these two activities we identified what the questionnaire should aim to measure. In the second stage, a group of patients who had a diagnosis of cancer and used acute oncology services helped the research team draft questions and response options. These questions were then tested with a further four people with cancer, to make sure the questions were easy to understand. Then we made some changes to the questionnaire. The final questionnaire had 37 questions about the quality of care and nine questions about a patients’ background and condition. Questions included aspects such as: quality of information and care they received; the quality of the care environment (whether it was clean and safe, and provided privacy; whether patients’ family and friends were supported and kept informed by staff; whether patients had long waits for care; and the ease of discharge. In the third stage, the questionnaire was sent to patients with cancer to complete one to two weeks after they had used the acute oncology service at Southampton General Hospital. Patients were sent a text to their mobile phone with a link to the questionnaire. 171 patients completed the questionnaire, the majority of whom were female (56.5%). Most participants rated their overall care experience positively, with 82.4% selecting “Very good” and 9.7% selecting “Good.” Only 4.2% of participants rated their care as “Poor” or “Very poor”. Responses to the questionnaire allowed us to test how well each of the questions worked both by themselves and in combination with others in the questionnaire. Responses provided the Trust with important information to help identify areas where care was very good and areas in need of improvement. The next study will test the questionnaire in other Trusts whose acute oncology services might be organised in different ways to the services at Southampton. Background Hospitals have established structured pathways for managing patients with oncological emergencies through acute oncology (AO) services. Whilst some Trusts have developed local questionnaires specific to that service there is no survey available to measure and compare patient experience across NHS trusts. This study will co-design a patient-reported experience measure (PREM), intended to be adaptable for use across different AO service models. Advisory Group Members : Andrew Dossett, Lead Clinical Advanced Clinical Practitioner for Acute Oncology Service, University Hospital Southampton Jane Winter, Macmillan Lead Nurse, Wessex Cancer Alliance Laura White, Head of Involvement & Participation, University Hospital Southampton Katie Hudson, Lead Advanced Clinical Practitioner for Cancer Care Wards, University Hospital Southampton Mrs Susan Restorick-Banks (PPI Representative) Mrs Anne Ongley (PPI Representative) Alison Keen, Head of Cancer Nursing, University Hospital Southampton Philippa Jones, Acute Oncology Nurse Advisor, Board Member of UK Acute Oncology Society. Prof. Ernie Marshall, Medical Oncologist, Wirral University Teaching Hospital (Clatterbridge) NHS England national lead for Acute Oncology

535f16ee-e98a-4782-81fa-97a73abd8468 ADOPTED: Improving patient safety, workforce wellbeing and NHS efficiency through improved shift patterns for nursing staff: study protocol Principal Investigator: Dr Chiara Dall'Ora, University of Southampton Project partners: University of Southampton; Nottingham University Hospitals NHS Trust; Herefordshire and Worcestershire Health and Care NHS Trust; Northumbria Healthcare NHS Foundation Trust; Sheffield Children’s NHS Foundation Trust; Southern Health NHS Foundation Trust; Nursing and Midwifery Council Team: Dr Hannah R. Barker (Qualitative lead), Prof Peter Griffiths (Senior Mentor), Dr Chiara Dall’Ora (Project lead) Public & staff involvement: Nursing staff, ward managers and matrons from 5 Trusts helped shape the DCE survey and future research priorities Funded : Academy of Medical Sciences Springboard grant Started: 1/9/23 Ended: 31/8/24 Lay summary What is the problem? If the COVID-19 pandemic has taught us something, it is how important the wellbeing of the health workforce is. Nurses form a big part of the health workforce, yet many leave their job because of poor working conditions. In recent years, hospital managers introduced long shifts for nurses, hoping nurses would be happier with their work-life balance. However, our research found that long shifts have negative effects for nurses and patients. We still do not know what good shift patterns look like. What we asked: How can shift patterns be designed to better support nurses’ wellbeing and help the NHS retain staff? We conducted interviews with nursing staff, ward managers and NHS directors across five Trusts, and a large UK survey (discrete choice experiment) with 1,449 registered nurses. What we found: Nurses value (1) consistency and predictability in rotas; (2) adequate rest between shifts; and (3) opportunities to enjoy work through meaningful time with patients and teams. Rigid, last‑minute rosters and very long shifts erode wellbeing. From the national survey: Night‑only patterns and having no whole weekends off are the least acceptable rota features and require the largest compensation to tolerate. Predictable schedules and having scope to request shifts are strongly valued. Nine‑to‑ten‑hour shifts are preferred over 12.5‑hour shifts. What this means: Collaborative rostering that balances service needs with personal circumstances can improve satisfaction and reduce turnover. Guaranteeing protected weekends where feasible, improving predictability, and avoiding very long duties are practical levers for better retention and patient care. What we did with the new knowledge: We ran 5 dissemination and co‑design workshops with NHS Trusts (Jan–Feb 2025) to share qualitative findings and plan next steps. Used findings to refine a national discrete choice experiments (DCEs) on rota preferences (n=1,449) and generate policy‑ready benchmarks for rota design and enhancements. Engaged workforce matrons and managers to shape future studies on flexible rostering and shift design. What's next? - Publish the DCE paper. - Produce a policy brief (ongoing with Public Policy | Southampton) - Attract funding to evaluate how flexible rostering can reduce sickness absence, turnover and costs - Co‑design of a shift‑work intervention with staff and managers (Hannah Barker NIHR Development & Skills Enhancement Award) - Support Trusts to pilot more predictable rotas, protected weekends and 9-10‑hour options where feasible. See article: Moving Beyond 12 Hour Shifts: How Evidence is Powering Change

b45fdd12-d569-4bd5-a0c4-1547cfa6f910 PARTNERS II: Testing implementation and evaluation of a digital tool for multisectoral support and management of people living with Parkinson’s disease and/or arthritis. Chief investigators: Professor Mari Carmen Portillo, Professor of Long Term Conditions, School of Health Sciences, University of Southampton. Dr Dorit Kunkel, Lecturer, University of Southampton and Research Design Service, School of Health Sciences Team: Dr Katherine Bradbury Health Psychologist, Senior Research Fellow NIHR ARC Wessex Digital Health Lead University of Southampton. Dr Lindsay Welch, Associate Professor of Nursing Practice, Bournemouth University & University Hospitals Dorset Sandra Bartolomeu Pires, PHD Researcher, School of Health Sciences, University of Southampton. Professor Christopher Edwards, Consultant Rheumatologist, Honorary Chair of Clinical Rheumatology, Associate Director Southampton NIHR Clinical Research Facility, University Hospital Southampton (NHS) University of Southampton. Dr Lindsey Cherry, Associate Professor (Podiatry Rheumatology), School of Health Sciences, University of Southampton. Francesca White, Senior Strategic lead for Partnerships, Hampshire and Isle of Wight Integrated care board. Dr Hayden Kirk, Clinical Director Adults Southampton, Solent NHS Trust ( Hampshire and Isle of Wight NHS Foundation Trust) Caroline Aylott, Head of Research, Versus Arthritis, Carolyn Fitton, Senior Research Assistant, School of Health Sciences, University of Southampton. Gillian Merritt, Service Improvement Manager, Parkinson’s UK. Peter Rhodes, Senior Programme Manager, Industry & Innovation, Health Innovation Wessex. Partners: University of Southampton, Bournemouth University & University Hospitals Dorset, Hampshire and Isle of Wight NHS Foundation Trust, NIHR Clinical Research Facility, University Hospital Southampton, Hampshire and Isle of Wight Integrated care board, Versus Arthritis, Parkinson’s UK, Health Innovation Wessex. Start: 1 October 2024 End: 30 November 2025 Summary Self-management can help people with long term conditions manage their health better. Existing self-management tools focus on healthcare (medication management, appointments) and fail to understand how people live with and adjust to their long-term conditions. This includes social support (family/friends) and other resources and networks available like the voluntary sector, industry and community groups. We have created an intervention (an action to improve a situation or prevent it getting worse) to support self-management for people with Parkinson’s Disease and/ or Arthritis and their family/carers. This intervention recognises the role of social support, charities and other organisations in adjusting to living with a condition. Based on previous study findings where we looked at the literature and talked to patients and health care professionals, we co-produced a digital tool website/app ready for testing. Aim of the research: To explore the acceptability (ease of use) and how helpful the tool is in supporting self-management by collecting data and by talking to patients and carers who have used it and health care workers. The PARTNERS tool will support professionals and other organisations to connect, share resources and optimise communication and referrals, leading to more personalised and cost-effective use of resources (beyond healthcare) in the community. Design and methods: Mixed methods acceptability and implementation study. The research will take place in community settings in Wessex. We will prioritise disadvantaged groups (those less comfortable using technology and less able to access available resources and support). We will test the PARTNERS tool with patient, carers, health professionals and voluntary organisations (Parkinson’s UK and Versus Arthritis). Testing will help understand how the tool is used and what helps or hinders its success. We will talk to people who used it to identify how useful and helpful it was and how to integrate it with their normal care. The research will support better self-management of Parkinson’s Disease and/or Arthritis, make recommendations for policy development and provide evidence for how to improve NHS services. PPI: We are working with people with Parkinson’s Disease and/or Arthritis and their families/carers. We will work together as equal partners to decide their level of involvement, roles, ways to input and training needs. We will also explore what works best or what we should do differently in their involvement. Dissemination: We will share our learning across the different groups involved. This will include presentations, policy briefings, newsletters and public events.

55041d82-7430-4dcd-98fd-9bd97e850e1f PREDICT-NURSE – feasibility: Predicting Patient Acuity/Dependency-Based Workload from Routinely Collected Data to Assist with Nursing Staff Planning – feasibility study Prinicpal Investigator: Christina Saville Team: Paul Meredith, University of Southampton Chiara Dall'Ora, University of Southampton Tom Weeks, Portsmouth Hospitals University NHS Trust Sue Wierzbicki, Portsmouth Hospitals University NHS Trust Peter Griffiths, University of Southampton Ian Dickerson – Patient and Public Involvement Representative Start Date: 1 September 2023 End Date: 30 September 2024 Plain English Summary of Findings Using information about patients already held by hospitals (such as patient demographics, diagnostic information and movements between wards) we estimated the number of nurses needed on the ward each shift. We found that our estimates matched closely with the currently widely-used approach. For that approach, the nurse in charge records the severity of each patient's illness, and how dependent they are on nursing care, every day or shift. In contrast our approach uses a type of regression (a tool for finding patterns in data) to automatically calculate the number of nurses needed. This would potentially save nurses time in assessing patients by using information that is already recorded. What's next? We used data from one hospital so need to find out if results are similar for other hospitals. We also need to find out whether our estimates relate to patient outcomes. We have funding for another 1-year study (PREDICT-NURSE validation and extension) to explore this using existing data from another hospital. We will also investigate whether we can use similar methods in other settings outside acute care, e.g. mental health and community settings. We have also received funding for a 2.5-year study (PREDICT-NURSE) with at least 5 hospital Trusts collecting new data to develop and test algorithms using a wider range of data and outcome measures. This study will be based on user-centred design, with a national survey and workshops to gather nurses’ and other stakeholders’ views. Background Having enough nurses to care for patients on hospital wards is critical for patient safety, but it is difficult to plan for varying numbers of patients and unknown trajectories of deterioration and recovery. Tools for assessing patients’ needs to help with staff planning are an extra nursing task, thus adding further to workload. We do not know whether ward-level demand could be accurately predicted using existing assessments and data that is already recorded electronically. The overall aim of the project was to explore the feasibility of predicting acuity/dependency-based workload measures, as assessed by nurses, from routinely collected information in patients’ electronic health records. Publications Estimating Nurse Workload Using a Predictive Model From Routine Hospital Data: Algorithm Development and Validation: https://doi.org/10.2196/71666

Research Fellow < Back Skaiste Linceviciute Research Fellow Long Term Conditions Skaiste Linceviciute is a Research Fellow at the ARC Wessex Mental Health Hub at the University of Southampton appointed to work on projects related to the Long-Term Conditions and Ageing and Dementia themes. Skaiste brings expertise as a qualitative researcher in areas on uncovering the challenges and unmet needs of people living with long-term physical and mental conditions as well as pursuing research on person-centered support systems. Skaiste is also the Mental Health Hub's Researcher Representative for the ARC Public Involvement Forum Wessex, working together with other contributors ensuring research meaningfully addresses community priorities and is guided by people with lived experience. Previous Next

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