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

8549d888-5b96-445e-9088-9a757edd9282 ADOPTED: IneQUIty in end of life care for children: Investigating experiences and families’ Needs after sudden and unexpecTEd deaTh in children and young people – the QUINTET study Chief Investigators: Professor Anne-Sophie Darlington, School of Health Sciences, University of Southampton and Dr Katherine Hunt, Senior Research Fellow, School of Health Sciences, University of Southampton Team: Dr Vicky Payne, School of Health Sciences, University of Southampton, Miss Sarah Hodkinson, Associate Professor, Department of Music, University of Southampton, Professor Heather Gage, Professor of Health Economics, School of Biosciences and Medicine, University of Surrey, Dr Emily Cooper, Law and Policing, University of Central Lancashire, Dr Jamal Hossain, Lecturer in Applied Statistics, School of Health Sciences, University of Southampton, Dr Joanna Garstang, Consultant Community Paediatrician, University of Birmingham, Dr Nicola Speed, SUDC (UK), Miss Emma Kneebone, 2wish, Miss Stacey John, Forget Me Not Children's Hospice. From: 01/12/2024 to: 30/11/2027 BACKGROUND Around 3000 children die each year in England and Wales, and 30% of deaths represent infants and children who die unexpectedly or suddenly from accidents, suicide or unexplained deaths. Clear guidance and palliative care services exist for children who die of a life-limiting condition, including emotional and psychological support for their families, which extends into bereavement. However, clear guidance and care are not available for sudden and unexpected infant and child deaths, even though these are often the most tragic, brutal and shocking deaths. We do not know very much about what it is like for families, what care they need, what care is available, how they manage and cope in the longer term after their child’s death, and how professionals need to be supported after often traumatic experiences. PLAN We recently brought together organisations and professionals who care for families when a child has died suddenly (e.g., health professionals, fire department, police, hospices, charities, schools) to commit to working together to improve care for these families, and improve training and support for professionals. This network helped develop this project. We want to investigate these aspects (organised in Work Packages -WPs), focusing on different questions: WP1: What care is available for these families – around the time of the death and into bereavement, and where do children die. We will investigate this through 1) past research, and 2) existing database with information on child deaths. WP2: Which services are available to families and who provides that care, and what are the experiences and needs of the professionals providing that care? We will 1) interview professionals who carry out the Child Death Review and 2) interview professionals who provide care in different settings. WP3: What are the experiences of families, what care helped and what do they need? And what are the long-term consequences for parents, such as grief and depression and physical health? - we will investigate this by 1) interviewing bereaved parents about their experiences, and 2) asking bereaved parents to complete a questionnaire about grief, depression and quality of care. WP4: What recommendations around care and support should we make? We will use the information from the previous work packages to develop recommendations on how to improve care around the time of the death and in bereavement. We will agree what the needs are for training and supporting professionals. INVOLVING FAMILIES We will involve bereaved parents though the organisations included in our network. We have two parent and two other lay members as co-applicants on the study. A formal parent advisory group will be set up to help us with research questions, materials, design of the study, recruiting parents, content, social media presence and study branding, and dissemination. We will also work with a team of parent investigators who will provide guidance to the researcher and support participants during interviews. DISSEMINATION We will produce scientific papers, develop recommendations for care and maintain a network of parents and professionals to support the project. We will create national awareness of the needs of these families and work with a policy engagement organisation to influence policy and change practice. We will produce newsletters, social media posts, and result postcards to update families and the wider network.

d6d7fb08-5eb7-4cab-afcf-359d64b8fe12 ADOPTED PROJECT: Young people’s barriers to mental health services Lead: Dr. Corine Driessens Co-Investigator: Professor Peter W F Smith Kim Markham Jones & Fiona Lacey – YoungMinds Nicole Davenport, Mahdi Hassan, Shahrbano Iqbal, Friday Skelton – young researchers recruited by and in employ of YoungMinds Starting date: October 2022 Ended: July 2025 Published in journal of psychiatric research online: Use or no use? Young People's engagement with mental health services https://doi.org/10.1016/j.jpsychires.2026.01.034 Many young people in the UK experience anxiety or depression, but most can’t get mental health support when they need it. From the very beginning of this project, young people, both as young researchers and as participants in four co-production workshops, played a central role in shaping our questions, interpreting the findings, and explaining what the results mean in real life. Their insight guided every stage of the work. This study looked at what affects whether young people use mental health services and what happens to those who don’t. The biggest factor in getting help was whether health care professionals recognized the young person’s distress was a mental health disorder. Other things like, severity of symptoms, being a female, having fewer supportive people around, or having unemployed parents played a smaller role. Young people who didn’t use services were less likely to be female, come from single-parent families, have caring responsibilities, or have been bullied. They were also more likely to have good relationships with their parents. Those who did use services had poorer outcomes later in adulthood, suggesting they faced greater difficulties overall. Because specialist mental health services are overstretched, responsibility has shifted to GPs and teachers, who often feel under-resourced and not fully trained to meet these needs. The GPs we spoke to faced strict referral rules, long waiting lists, short appointments, and limited mental health training. The teachers we spoke to also felt pressure to support students without the resources or guidance they need. After hearing these findings, a group of young people from the “missing middle” (those struggling but not qualifying for specialist care) recommended: Training all school and college staff in mental health. Better support for apprentices at work. Peer support groups in schools, colleges, and universities. Safe spaces and housing support for LGBTQIA+ students. More help for young carers and fairer benefits. Better training for all health workers to support diverse communities. Looser referral rules so young people don’t have to be “ill enough” to get help. Youth hubs offering safe spaces, activities, and mental health support. Overall, the findings show the need for more inclusive, preventative, and joined-up mental health support for young people. Reflections on Young People involvement with shaping analysis framework for mental health .docx Download DOCX • 2.37MB What did we find out? Presented the findings at national and international conferences (e.g. MQ/DATAMIND, ADRUK, NIHR Statistics Group, EPA Epidemiology & Social Statistics, International Congress of the European Society for Child and Adolescent Psychiatry) Presented the findings at ARC Wessex webinar Presented findings on ARC Wessex website Where next? The young people who took part in our workshops were very clear about one thing: we need to start much earlier. They told us that helping children learn emotional skills, like understanding their feelings, managing stress, and asking for help, before stigma takes hold could make a big difference in preventing mental health problems later on. Taking this guidance seriously, our team has now grown to include experts who know how to design effective mental health programmes for primary schools, as well as researchers who can identify exactly which elements such a programme should include. Our next step is to develop a primary school–based intervention shaped by what young people told us matters most. Because this type of work sits outside ARC Wessex’s remit, we are now seeking external funding to take the project forward and bring this early-intervention programme to life. https://video.wixstatic.com/video/6fe132_c8aa61002b864940a8aac2b8d7754c07/480p/mp4/file.mp4 https://video.wixstatic.com/video/6fe132_ee6a84e1cd6a4745a6de0f05e2034688/480p/mp4/file.mp4 https://video.wixstatic.com/video/6fe132_fc53aac3539f4f839ea71adcfb34b517/720p/mp4/file.mp4 Olly Parker, Head of External Affairs and Research at YoungMinds , said: “This research from YoungMinds and the University of Southampton shines a vital light on the record numbers of young people needing mental health support. Growing up today is incredibly tough. Many young people are experiencing multiple pressures which impact their mental health, including poverty, inequality, intense academic pressure and the online world, so it’s no wonder so many are struggling. One of the clearest recommendations from the young people involved is the urgent need for early support hubs in every community. We know many young people face long waits for mental health support and become more unwell while waiting, which can lead to needing more urgent care. We need major reforms to address the root causes of poor mental health and for the Government to focus on reducing waiting lists so young people can get the support they need. The recent 10 Year Health Plan showed promising commitments with Young Futures Hubs and Mental Health Support Teams. These initiatives are vital to reducing pressures on the system, improving support and reducing waiting times - their rollout must be a political priority. But more is needed to tackle the scale of need - we need radical solutions that will address the reasons why so many young people are struggling in the first place.” Corine Driessens, one of the researchers based in Southampton, said: “It has been a truly wonderful and positive experience working with these groups of young people. Their innovative and fresh ideas across a wide range of ways to help others get the mental health support they need have been inspiring.”

3832ef1c-ee61-4cdf-8362-5cdbe7212017 Wessex NHS Insights Prioritisation Programme Project (NIPP) Wessex NHS Insights Prioritisation Programme Project (NIPP) National Institute of Health and Care Research (NIHR) Applied Research Collaboration (ARC) Wessex and Wessex Academic Health Science Network (AHSN) Digital innovations for people living with frailty Read the Health Innovation Network report Project team Nicola Andrews (NIHR ARC Wessex), Cindy Brooks (NIHR ARC Wessex), Cheryl Davies (Wessex AHSN), Linda Du Preez (Wessex AHSN), Richard Finley (Wessex AHSN), David Kryl (NIHR ARC Wessex and Wessex AHSN), Susi Lund (NIHR ARC Wessex), Michelle Myall (NIHR ARC Wessex), Rebecca Player (Wessex AHSN) and Phoebe Woodhead (Wessex AHSN). Background to the project NIPP was funded by NHS England’s Accelerated Access Collaborative to enable ARCs and AHSNs to work together to accelerate the evaluation and implementation of innovations that support post-pandemic ways of working, build service resilience and deliver benefits to patients. The Wessex NIPP project focused on the use of digital interventions to support the care of people with frailty. We worked collaboratively with stakeholders from across the Integrated Care Systems in Dorset and Hampshire and Isle of Wight to identify system priorities in this area. The project had several components: 1 – Evaluation of uptake and use of the myCOPD app by older people We undertook a mixed methods evaluation of the myCOPD app , a digital monitoring and self-management tool, in relation to its use by older people. The findings showed a higher prevalence of COPD in the myCOPD eligible population than the general population, highlighting the importance of understanding the impact of frailty on uptake and use of the app. Those aged 75 and over, or living with moderate or severe frailty, were less likely to register with and more likely to decline the app. There was also evidence that follow-up support to promote use of the app could increase activation and help overcome technical barriers. Evaluation of myCOPD app - Summary of findings (ARC Wessex) .pdf Download PDF • 180KB Evaluation of myCOPD app - Full Report .pdf Download PDF • 368KB 2 – Development of a Theory of Change on use of data to enhance care of people with frailty Theory of Change is a method to develop understanding of how an initiative can achieve impact. This is displayed in a Theory of Change map. The development and refinement of the Theory of Change map drew on a review of the evidence and individual discussions with a wide range of stakeholders. Participants were from primary care, community services and acute care working in digital health or care, frailty, commissioning and population health management. Stakeholders identified that a lack of availability of routinely collected data from across organisations to inform decision-making impacted the care provided to people with frailty. Theory of Change map - Use of data to enhance frailty care .pdf Download PDF • 176KB Theory of Change Report - Use of data to enhance frailty care .pdf Download PDF • 461KB 3 - Investigation of the use, applicability and acceptability of digital remote monitoring for older people a) Listening activities with older people’s community groups to understand perceptions of digital remote monitoring We held face-to-face events at six older people’s community group meetings, including a carers’ group, an exercise class and a community group serving a majority black ethnic population. At these events we discussed benefits, concerns and barriers to the use of digital remote monitoring (the ability to monitor aspects of an individual’s health remotely using technology). We also asked group members how they thought their views might change as their health or abilities declined. b) Research study investigating use and acceptability of digital remote monitoring for older people with frailty in the community This mixed methods research study investigated digital monitoring at home approaches among older people with frailty, using Artificial Intelligence (AI)-facilitated sensors to monitor daily activities and routines. c) Evaluation of digitally enabled care within frailty virtual wards The evaluation used qualitative data from two frailty virtual wards ( NHS England » Virtual wards ) to explore the use, decision-making and impact of digital remote monitoring. We combined the qualitative data from the above three work packages (a, b and c) for thematic analysis. We found that a personalised approach is important, with a need to consider practicalities (such as cost and sensor positioning) and design of the technology. Face-to-face care is highly valued and should not be replaced by digital remote monitoring. Users and carers need to know what to expect, how the technology works, who is monitoring and when; this would aid trust. NIPP 2022-23 summary report .pdf Download PDF • 624KB NIPP 2022-23 Full report .pdf Download PDF • 838KB 4 - Co-production, piloting and evaluation of an online Implementation Toolkit Implementation is a complex process. For those tasked with introducing an innovation or a change to practice, service provision or delivery, there are a range of models, frameworks and tools to choose from to support the implementation journey. However, these can be inaccessible, specific to particular user groups, or fail to take implementation considerations into account at the outset. The Web-based Implementation Toolkit (WIT) was co-produced with a range of stakeholders by NIHR ARC Wessex. It is a user-friendly and accessible guide on what needs to be considered when implementing and how to achieve this. WIT can be accessed at: Helpful resources | NIHR ARC Wessex More details can be found at: Implementation | NIHR ARC Wessex Rapid Insights Guide for 2022/23 work A Rapid Insights Guide (with project highlights) was produced for NHS England at the end of the 2022/23 projects (work packages 3 and 4 above). Rapid insights report NHS E_for submission .pdf Download PDF • 322KB

65894af6-1d61-4f27-8b10-ff3b90451d8b Safer Nursing Care Tool and nurse staffing requirements What did we learn We found that for some wards using the Safer Nursing Care Tool (SNCT) gives a good estimate of the number of nursing staff needed. However, for other wards, relying on the estimate provided by this tool without further thought could lead to unsafe staffing levels for different reasons. For example, the current guidance recommends setting staffing levels to meet the average requirement, but following this logic, 18 wards in the three Trusts would often have been short-staffed. Also, a quarter of wards needed a sample of over 182 days to estimate the number of staff needed precisely, when the current recommendation is 20 days. Nursing workforce leaders at the three Trusts suggested characteristics of wards where the tool performed least well, for instance, high patient throughput and differences in workload between mornings and evenings. What difference can this new knowledge make? This project and the previous related project (NIHR-funded study https://doi.org/10.3310/hsdr08160 ) led to a direct collaboration with NHS England and NHS Improvement and an invitation to work with them to further develop and update the guidance on using the Safer Nursing Care Tool. The team have spoken about the research findings and implications at a series of NHS Improvement safe staffing fellows training events. They have co-developed a set of resources to help nurses plan staffing. Impact has been achieved through this research shaping revised guidelines published by NHS England and NHS Improvement on using the SNCT in combination with professional judgement to determine nurse staffing requirements. We were invited to help facilitate workshops to co-develop a template for nurses to record their professional judgements. We are also in early-stage discussions with hospital managers in Greece about how the professional judgement framework might be relevant there, as well as discussions about how to achieve wider reach through the World Health Organization website. Why is this important? The professional judgement framework we developed as a result of these projects will benefit nurses, who use this tool nationally, by giving them concrete guidance on issues to consider when deciding staffing levels. It will benefit patients admitted to inpatient wards, through better matching of staffing levels to demand. Having too few nursing staff is related to adverse effects for patients (more deaths, more falls, longer stays in hospital), staff (turnover, sickness) and organisations (higher costs from temporary staff to fill gaps). Diagram 1 We presented the list of wards which were flagged as having overall poor fit to three nursing workforce leaders Some of the common factors they suggested as potential reasons for poor fit are shown here above. They highlighted wards with large morning-evening differences in staffing requirements (based on acuity-dependency ratings) may be among those where the tool fits least well. For wards that are particularly small or large, it is possible that the number generated by the SNCT is less likely to be sufficient to maintain minimum registered nurse levels when rostering staff to shifts. They highlighted some ward characteristics that mean the SNCT multipliers, as they are applied, may underestimate the true workload. These were high patient turnover, older patient population, cancer infusion/device activity. a high proportion of patients requiring one-to-one care AKA enhanced care/specialling. The factors suggested are on the whole congruent with published evidence What next? Our next step is conducting research predicting demand for nursing staff which we plan will also lead to tools and resources to guide decision-making around staffing. Research team: • Professor Peter Griffiths, Chair of Health Services, University of Southampton • Rosemary Chable, Deputy Director of Nursing, Education & Workforce, University Hospital Southampton NHS Foundation Trust • Nicky Sinden, Head of Nursing Workforce, Portsmouth Hospitals NHS Trust • Tracy Moran, Lead Nurse for Nursing Workforce, Education & Practice, Poole Hospital NHS Trust Project partners: • University of Southampton • University Hospital Southampton NHS Foundation Trust • Portsmouth Hospitals NHS Trust • Poole Hospital NHS Trust More information Evi dence Brief Publication 24_11_Professional_Judgement_Staffing_Eprints[16] .pdf Download PDF • 186KB Publications: Saville, Christina and Griffiths, Peter (2021) Ward staffing guided by a patient classification system: A multi-criteria analysis of “fit” in three acute hospitals. Journal of Nursing Management, 29 (7), 2260-2269. ( doi:10.1111/jonm.13341 ). Saville C, Griffiths P, Casey A, Chable R, Chapman H, Radford M, and Watts N (2023) Professional Judgement Framework, doi: 10.5258/SOTON/P1102 University of Southampton ( https://doi.org/10.5258/SOTON/P1102 ) Saville, Christina and Griffiths, Peter , Ejebu, Ourega-Zoé and Fogg, Carole (eds.) (2023) Introducing the Professional Judgement Framework to guide nurse staffing decisions (Evidence Brief, 24) 2pp. http://eprints.soton.ac.uk/id/eprint/484412 Saville, Christina and Griffiths, Peter , Ejebu, Ourega-Zoé and Fogg, Carole (eds.) (2024) Nurse staffing decisions: the Professional Judgement Framework. Nursing Times, 120 (7). https://www.nursingtimes.net/c...4-06-2024/ The Safer Nursing Care Tool as a guide to nurse staffing requirements on hospital wards: observational and modelling study ( nihr.ac.uk ) Video: Computer simulation what and why? https://sho.co/1E34T The importance of professional judgement in nurse staffing decisions https://southampton.cloud.panopto.eu/Panopto/Pages/Viewer.aspx?id=87fcb9bb-e9dc-4b43-8377-acb700e3bec2 Here is the orginal research outline Identifying wards for which the Safer Nursing Care Tool is appropriate for assessing nurse staffing requirements Principal Investigator: Dr Christina Saville Team members: Dr Christina Saville (Research Fellow, University of Southampton) Professor Peter Griffiths (Chair of Health Services Research, School of Health Sciences, University of Southampton), Rosemary Chable RN (Deputy Director of Nursing, Education & Workforce, University Hospital Southampton NHS Foundation Trust) Ms Nicky Sinden (Head of Nursing Workforce at Portsmouth Hospitals NHS Trust), Tracy Moran (Lead Nurse for Nursing Workforce, Education & Practice, Poole Hospital NHS Foundation Trust) Start: 1 December 2019 End: 1 August 2020 Partners: University of Southampton, Portsmouth Hospitals NHS Trust, Poole Hospital NHS Foundation Trust Lay summary It is important to have enough qualified (registered) nurses looking after patients staying on hospital wards, because having too few is associated with worse patient care and more patient deaths. On the other hand, there are extreme shortages of nurses, so having “too many” on a ward could be considered a waste. The Safer Nursing Care Tool is used in many hospital wards in England to work out the number of nursing staff (including nursing assistants) needed. However, a recent study showed that it is more suitable on some wards than on others. For example, we found that factors not accounted for in the tool, e.g. whether a ward is surgical or medical, and the proportion of single rooms, also affected professional judgement of whether staffing was adequate. Aim This study aims to understand which ward characteristics mean that the Safer Nursing Care Tool gives a good estimate of the nursing staff required, and which ward characteristics mean that the number might need to be adjusted or further considered by taking into account the expertise of ward leaders. It also aims, if possible, to provide some general rules or an add-on tool to help nursing managers with setting staffing levels. Methods We will analyse the data that were collected for a previous study in a different way. This time we will focus on differences between wards rather than hospitals. We will use analytical techniques for finding patterns in data to identify similar wards. In our team we have experienced leaders in nursing who will provide expert professional insights into ward characteristics. Patient, public and community involvement and sharing results We will involve nursing managers in the study because they are the potential users of any rules or tools we develop. We plan to develop a resource (rules or a tool) for nursing ward managers and to run a workshop to test use of this resource. We plan to write one academic paper about what we find out. We also can share the plans for this with lay members from the PPI group as appropriate. We are developing a smaller user group across Workforce and Frailty and Older People teams.

a3233a2e-82c9-4634-a984-44c5ddb93cad ADOPTED PROJECT: MELD Developing a Multidisciplinary Ecosystem to study Lifecourse Determinants of Complex Mid-life Multimorbidity using Artificial Intelligence (MELD) Chief Investigator: Dr Simon Fraser – University of Southampton Project Team Members: Dr Nisreen Alwan – Associate Professor in Public Health, School of Primary Care, Population Sciences and Medical Education, University of Southampton, Professor Michael Boniface – Director of the University of Southampton IT Innovation Centre and Web Science Institute, Professor Ben MacArthur – Mathematical Sciences University of Southampton, Professor Rebecca Hoyle – Mathematical Sciences University of Southampton, Dr Sarah Crozier – Associate Professor of Statistical Epidemiology, MRC Lifecourse Epidemiology Unit, Faculty of Medicine, University of Southampton, Mr William Ware – Patient and Public Involvement Contributor, Mr James McMahon – Patient and Public Involvement Contributor, Dr Emilia Holland – Public Health Specialty Registrar, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Dr Zlatko Zlatev – Senior Enterprise Fellow, Electronics & Computer Science, University of Southampton Background: As with many countries we are facing challenges related to the growing number of people living with multiple long-term health conditions like diabetes, heart disease or dementia. All the way through peoples’ lives many things influence the chances of developing such conditions. This includes some things that are hard to research - broader issues throughout life such as the environment people grew up in, their education, work, and so on. Sadly, people from more socially and economically disadvantaged backgrounds are more likely to develop multiple conditions at an earlier age. There is also evidence that the order of developing conditions varies considerably and influences what then happens to people. This makes understanding these broader issues and how they affect that order vital to inform when and how we should intervene to prevent conditions developing. To achieve this, we need to study large numbers of people over their whole lifetime, but such datasets do not exist. Very large health datasets collected from NHS GPs are helpful but haven’t been running long enough to track from birth to later life. They include lots of information on long term conditions but not much about broader issues. In our Development Award (called ‘MELD’) we had access to one such dataset of about 700,000 people, which we used to identify health conditions. We also accessed data from the ‘1970 British Cohort Study’ – a long-running research study called a ‘birth cohort’ Publication: Early-onset burdensome multimorbidity: an exploratory analysis of sentinel conditions, condition accrual sequence and duration of three long-term conditions using the 1970 British Cohort Study https://bmjopen.bmj.com/content/12/10/e059587.full

Vikki Tweedy is an Advanced Nurse Practitioner (Dementia/Frailty) Dorset County Hospital NHS Foundation Trust - and is about to begin a PhD at Bournemouth University < Back Caring for the person with dementia in hospital Veterans and Dementia - why routines can matter Vikki Tweedy is an Advanced Nurse Practitioner (Dementia/Frailty) Dorset County Hospital NHS Foundation Trust - and is about to begin a PhD at Bournemouth University Dementia is a progressive condition affecting cognition, memory, and behaviour, with significant implications for individuals, families, and healthcare providers. Patients with dementia are highly vulnerable in hospital environments due to unfamiliar surroundings, disrupted routines, and communication difficulties. This can lead to increased anxiety, agitation, and a decline in physical and cognitive function. The traditional hospital model, which prioritises medical interventions over psychological and emotional well-being, often fails to meet their holistic needs. Therapeutic engagement involves structured, person-centred interactions that promote communication, emotional well-being, and cognitive stimulation. Rather than focusing solely on physical care, it aims to build trust, reduce distress, and enhance the overall hospital experience. While medical management is essential, therapeutic engagement and meaningful activity play a crucial role in improving patient well-being and hospital experience and here Dorset County Hospital NHS Foundation Trust the Dementia team have taken a proactive approach to try to address the personalised need for activity. Meaningful activity refers to engagement that holds personal significance to an individual. For people with dementia, maintaining a sense of routine and purpose through tailored activities can significantly enhance well-being. Through engagement with veterans with dementia in acute hospital setting, I have observed first hand how their military backgrounds influence their hospital experiences, responses to stress, and engagement with care teams. Meaningful activity is particularly relevant for veterans with dementia, whose unique life experiences, military backgrounds, and potential trauma histories require a tailored approach to care. Understanding their needs and providing structured engagement can help mitigate distress, improve outcomes, and foster a sense of purpose during hospitalisation. For veterans with dementia, the challenge of the hospital environment can be further compounded by their past experiences. Military training emphasises structure, discipline, and resilience, which may shape how veterans respond to hospitalisation. Additionally, some veterans may have underlying post-traumatic stress disorder (PTSD) or other service-related mental health conditions that can influence their reactions to stress, noise, and certain interactions. Without appropriate engagement strategies, they may experience heightened distress, mistrust, or withdrawal. Having completed an NIHR internship (research initiation award), this gave me confidence and knowledge to want to pursue a clinical academic pathway and my work in this area has now led me to progress a proposal for a PhD, focusing on the lived experience of veterans with dementia in the acute hospital setting, further highlighting the importance of personalised, meaningful interventions in acute care settings. It is hoped that this research will contribute to improving care pathways for veterans with dementia, ensuring they receive hospital care that recognises and respects their unique needs. Therapeutic engagement and meaningful activity are essential components of high-quality dementia care in NHS acute hospitals. For veterans with dementia, recognising and integrating military-specific approaches can further enhance their hospital experience, reduce distress, and promote better outcomes. Embedding these principles into routine practice requires staff training, investment in resources, and collaboration with military support organisations. Here at Dorset County Hospital we have also been extremely fortunate to have been supported by the Royal British Legion who have provided us with some care packages to give to veterans in the hospital. The giving of the care packages by the dementia team was an excellent way to engage with patients about their military history but also to give the recognition to those who have served. Previous Next

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

Nestor Serrano-Fuentes RN, PhD student and Research assistant for the Long-Term Conditions Research Group, Health Sciences, University of Southampton < Back Traveling back in time: exploring the Netley Red Cross Hospital during World War I Nestor Serrano-Fuentes Nestor Serrano-Fuentes RN, PhD student and Research assistant for the Long-Term Conditions Research Group, Health Sciences, University of Southampton November is remembered as the month in which the First World War ended; a time to remember our loved ones who fell in battle. Between 1914 and 1918, many stories unfolded: stories of life, death, love, births, feelings and emotions. Those feelings flourish today when walking through the green park and woodland at Netley on the Southampton shoreline. I look at the sea, that little orange chapel in the middle of the great esplanade, I close my eyes and visualise the protagonists of this story, talking among themselves, laughing, shouting, touching and hugging… My name is Nestor, I am a young man, nurse and researcher at the University of Southampton. Two years ago, while running on a cold winter morning along the south coast at Netley, something drew my attention. What was a lonely chapel doing here? I stopped to read some information panels and discovered that, in that place had been the Netley Hospital or Royal Victoria Hospital. According to some books, this was the largest British military hospital of all time. Furthermore, with the arrival of the war-wounded its capacity grew yet further Leading to the building of the British Red Cross Hospital just behind the main building and the recruitment of volunteers in the UK and overseas. Netley Hospital in 1918 Sister Harvey and some of the patients from 41 Hut A Japanese nurse who worked at Netley in 1918 - unnamed I needed more information and began to browse the historical archives online. Later I came across a treasure; The Netley British Red Cross Magazine . It was December and I was combing the historical archives in Winchester and there in my hands were prints of those magazines from 1918. They were filled with poems written by soldiers and nurses, cartoons, real photos and countless stories told in the first person. A few days later, I phoned my friend Elena Andina, lecturer of nursing at the University of Leon (Spain). She is a dreamer, humanist, and a person with whom I share a passion for the history of the nursing profession. I said: “You’re not going to believe what I have found! We’ve got some work to do!” We decided to read those six issues of the magazine. We were filled with great affection for the people and stories. We set about starting to analyse and contextualise the data and information, and began to write an article on the history of nursing telling the story of how care was delivered to soldiers during World War I. We were so lucky, it was like travelling in a time machine, an incomparable feeling. After a first analysis, we realised that there was a relationship between what was happening at Netley and the revolutionary thinking and ideas of Florence Nightingale, who is considered the creator of modern nursing. The focus on the environment on care - sunlight, humidity, fresh air, silence during a night shift, empathy, the smallest details that nurses took care of, such as the size of pyjamas for their patients, the use of small boats as a source of leisure for patients and nurses, are just some of the aspects that we glimpsed between those pages. Throughout history, wars and pandemics have shaped and changed the way nursing care has been delivered. If we look back, many of the measures that were applied we continue to use today. During this covid19 pandemic, the importance of open spaces and physical spaces between people, fresh air or sunlight are the same – echoes of the voices speaking from the pages of the Netley magazines in 1918. They say history tends to repeat itself, for better or for worse. What can we learn from it? Let us continue to lovingly preserve it and keep it in mind to acknowledge our ancestors and as inspiration in the search for current and future answers. Nestor Exploring The Netley British Red Cross Magazine: An example of the development of nursing and patient care during the First World War - Nestor Serrano-Fuentes& Elena Andina-Diaz (download below) serranoandina_2020_netley-hospital .pdf Download PDF • 768KB Elena Andina-Diaz - co-researcher Previous Next

09039be4-7f54-4e52-b415-7d6e49acfe67 Predicting nurse staffing requirements -validation and scoping extension study (PREDICT-NURSE validation and extension) Chief Investigator: Paul Meredith, Senior Research Fellow, University of Southampton Team: Christina Saville, Senior Research Fellow, University of Southampton Chiara Dall’Ora, Associate Professor in Health Workforce, University of Southampton Zlatko Zlatev, Senior Enterprise Fellow, University of Southampton Peter Griffiths, Chair in Health Sciences Research, University of Southampton Ian Dickerson, PPI Representative Tom Weeks - E Systems Implementation Manager Tom.Weeks@porthosp.nhs.uk Sue Wierzbicki - Lead Nurse - Workforce Sue.Wierzbicki@porthosp.nhs.uk Partners: Hampshire and Isle of Wight Integrated Care Board, Hampshire Hospitals NHS Foundation Trust, Portsmouth Hospitals University NHS Trust, Salisbury NHS Foundation Trust. Start: 1 October 2024 End: 30 September 2025 Our aim We aim to show that a computer algorithm we have developed which uses information that is already collected about patients can provide good estimates of the number of nurses needed on hospital wards to provide safe care for the patients. Background information It is important to have enough nurses to care for patients on hospital wards. If there are too few nurses, patients may take longer to recover, suffer complications, or die, and the capacity of the hospital to cope with new admissions is reduced. Also staff well-being is affected by high workloads and there is more staff sickness. Many hospitals use the Safer Nursing Care Tool (SNCT) to help them manage staffing levels. This involves surveying all the patients in a ward perhaps three times a day. Assessing each patient in this way is an extra nursing task and in itself adds to the workload. We have developed a computer algorithm using data from one hospital which can provide similar estimates of nursing staff requirements to SNCT but we need to check that these estimates would keep patients safe if they were followed. What we will do We shall use data collected for a previous study as input to the algorithm to produce estimates of nurse staffing requirements for each ward shift using information which could be known at the time. We will compare actual staffing with the algorithm’s estimate to see if there is a deficit or surplus of staff. For each admission we will examine how these deficits and surpluses relate to patient outcomes. We will compare using the algorithm to set a threshold for safe staffing with using the SNCT estimates as a threshold. Our comparisons will include looking at how good the methods are for wards with higher numbers of under-served groups such as the over 75s, those with learning disabilities and those with mental health conditions. We will measure the effect of staff shortfalls on the number of staff sickness absences. The performance of the algorithm will be checked using data from a second hospital in the database. We shall work with our partners to find out what tools are used to determine nurse and other staffing requirements on a day-to-day basis in community and mental health settings and what data on care requirements and outcomes is electronically recorded. We will discuss with partners what opportunities, potential benefits and practical considerations there are to implementing a predictive tool of staffing requirements. Communicating results We will write an academic paper, produce an article for the Nursing Times, create a poster for display at conferences, and publicise the results on social media. Involving the public We will involve local PPIE group members in evaluating and commenting on the possible uses of a predictive tool to support decisions in the day-to-day management of nurse staffing levels on wards.

df3a87da-ba5f-40cd-8109-9f23cf0662d9 Promoting person-centred care using the CHAT&PLAN conversation guide https://vimeo.com/469226317 Promoting person-centred care using the CHAT&PLANTMconversation guide Project leads: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Teresa Corbett (Lecturer, Solent University) Team members: Professor Jackie Bridges (Professor of Older People's Care, School of Health Sciences, University of Southampton), Dr Teresa Corbett (Lecturer, Solent University), Professor Alison Richardson (School of Health Sciences, University of Southampton), Dr Jane Winter (Macmillan Consultant Colorectal Nurse, University Hospital Southampton NHS Foundation Trust), Start: 1 October 2019 Ends: 30 April 2022 Project Partners: University Hospital Southampton NHS Foundation Trust, Southern Health NHS Foundation Trust, Bournemouth University, Macmillan Cancer Support Lay summary The aim of this Wessex ARC project is to share a conversation guide we have developed through our research. The guide helps health and social care staff talk to older adults who have lots of different conditions. The guide has 8 steps that should be followed in a meeting with people about their needs and personal goals. We call the guide “CHAT&PLAN” and we’d like to make sure that people working in health and social care know about it and use it in their work. This website leads to resources to support people to use CHAT&PLAN in their work. We have a new project underway with the Wessex Cancer Alliance that tests out some new ways of supporting people with cancer, including the CHAT&PLAN. Corbett, T., Cummings, A., Lee, K., Calman, L., Fenerty, V., Farrington, N., Lewis, L., Young, A., Boddington, H., Wiseman, T., Richardson, A., Foster, C., Bridges, J. (2020). Planning and optimising CHAT&PLAN: a conversation-based intervention to promote person-centred care for older people living with multimorbidity. PLOS One . https://doi.org/10.1371/journal.pone.0240516 The following people were involved in the research behind the CHAT&PLAN: Dr Hilary Boddington, Professor Jackie Bridges, Dr Lynn Calman, Dr Teresa Corbett, Dr Amanda Cummings, Dr Naomi Farrington, Vicky Fenerty, Professor Claire Foster, Dr Kellyn Lee, Lucy Lewis, Professor Alison Richardson, Dr Jane Winter, Professor Theresa Wiseman, Alexandra Young

bd368e62-bd41-4d7a-a7ea-673ea3582964 ADOPTED PROJECT: High Harm Domestic Violence Perpetrator Pilot Evaluation Chief Investigator: Dr Sara Morgan – University of Southampton Project Team Members: Mrs Katerina Porter – University of Southampton, Mrs Fiona Maxwell – University of Southampton, Professor Julie Parkes – University of Southampton Organisations Involved: Hampshire County Council, Hampshire Constabulary, Office of the Police and Crime Commissioner, Hampshire, The Home Office, Hampton Trust Background data Domestic violence & abuse remains a pressing public health concern In the UK, 18% of adults aged 16+ have experienced domestic abuse from an intimate partner 1 In Southampton, domestic abuse accounts for 33% of violent crime Methods Analysis of routinely-collected anonymised quantitative data on all individuals meeting the Operation’s inclusion criteria (n=321) Interviews with key professionals (n=12) 11,751 individuals identified as perpetrators of domestic abuse in 2 policing districts over 14 months 131 individuals included in the Operation Foundation cohort, for allocation to High-Harm Teams, who attempt to engage perpetrators into a specialist behaviour change programme, ADAPT Results Operation Foundation identifies the domestic abuse perpetrators who pose the highest risk of the highest harm to their victims, and most require Police attention 10% of the Operation Foundation cohort were referred to ADAPT 2% of the cohort completed the ADAPT programme over 24 weeks High-Harm Team officers used new working practices to attempt to engage perpetrators and provide support to make healthy behaviour changes Where perpetrators were unwilling or unable to engage with the behaviour change intervention, High-Harm Team officers relentlessly pursued those perpetrators to disrupt their potential to pose a risk to their victims Qualitative data from High-Harm Team officers suggests that the Operation Foundation method had had positive and worthwhile effects regarding reoffending rates and reduction in risk to victims Further research is needed to determine the effectiveness of the Operation Foundation method CONTACT: k.a.porter@soton.ac.uk s.a.morgan@soton.ac.uk REFERENCES: 1. Robinson, A. L. and Clancy, A. (2017). New initiatives to tackle domestic violence using the Priority Perpetrator Identification Tool (PPIT). Cardiff: Cardiff University. 2. Crime Survey for England & Wales, 2022 3. Southampton Data Observatory, 2022 4. ADAPT programme, run by Hampton Trust