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

DEM-COMM programme Building Capacity in Dementia Research DEM-COMM has been a successful capacity-building scheme for post-doctoral researchers working in applied dementia research. The scheme launched on October 1st, 2022, with funding from the National Institute for Health and Care Research and the Alzheimer’s Society, and will run until March 31st, 2026. The aim of DEM-COMMhas been to prepare a future cohort of researchers for the role of Chief Investigator in applied dementia research. This is an important and specialised role that carries with it the expectation that the lives of people living with (or at risk of) dementia will improve because of research. The scheme supported the development of more than 70 early to mid-career researchers working in one of the 15 Applied Research Collaborations (ARCs) across England. Read the full report Supporting the future generation of Chief Investigators in Applied Dementia Research Independent report on Mapping Dementia Research Capacity - Mapping career development opportunities in applied dementia research Dementia Festival 2025 report DEM-COMM is led by Professor Ruth Bartlett with ARC Wessex as the host and coordinating centre. In 2026 we celebrated the end of the DEM-COMM programme at an event in Southampton - below are just some of the videos and images from that day Southampton Test MP Satvir Kaur explains how important the work of the Dementia Fellows has been and how personal it is to her. Lisa Hammond from the Alzheimer's Society who part funded the Dem-Comm fellowships praises their impact on the lives of people with dementia and their carers and families. Watch the DEMCOMM showreel created to celebrate all the hard work and achievements of the NIHR Dementia Fellows DEM-COMM Research Fellows Dementia Post Doctoral Awards NIHR ARC East of England NIHR ARC East Midlands NIHR ARC Greater Manchester NIHR ARC Kent, Surrey and Sussex NIHR ARC North East and North Cumbria NIHR ARC North Thames NIHR ARC Northwest London NIHR ARC North West Coast NIHR ARC Oxford and Thames Valley NIHR ARC South London NIHR ARC Wessex NIHR ARC West NIHR ARC West Midlands NIHR ARC Yorkshire and Humber NIHR ARC South West Peninsula

Long Term Conditions Long Term Conditions Theme The Long Term Conditions (LTC) Theme, led by Professor Mari Carmen Portillo with Deputy Lead Dr Dorit Kunkel, delivered a broad programme of research and implementation designed to improve the lives of people living with long‑term conditions and multiple long‑term conditions. The theme’s work spanned deprescribing, medicines optimisation, treatment burden, physical activity, service improvement, co‑production, and person‑centred care. A major area of impact is medication deprescribing and optimisation. The MODIFY project has significantly enhanced safety and quality of life for frail older adults by adopting a structured, multidisciplinary approach to medication reviews. It supports clinicians through training, tools, and collaborative working models, and is now embedded within wider system initiatives such as the Wessex Health Innovation Network’s Polypharmacy Action Learning Sets . Public engagement activities—including creative outputs like a deprescribing song—have helped raise awareness and encouraged culture change in medicines optimisation. Further medicines‑related research has identified ongoing risks related to inappropriate prescribing of anti-inflammatory painkillers for older adults and those with conditions such as kidney or heart disease. A GP‑focused risk‑identification tool was developed to address this. Another study highlighted that many people on disease‑modifying drugs undergo high‑frequency monitoring despite long‑term normal results, suggesting opportunities to reduce unnecessary burden and NHS workload. The Treatment Burden Study , involving more than 800 Dorset adults, showed that high burden is common and often driven by lifestyle challenges, appointment access, financial pressure, and complex medication regimens. Its follow‑on project, SPELL, produced short, practical measures for clinical use. The findings also informed improvements for Care Coordinators in Southampton, enabling them to better identify and support individuals struggling with their conditions while reducing demand on GP time. The theme optimised community‑based support systems, developing a Link Worker framework for social prescribing and piloting the LifeBoost app to guide people with LTCs to personalised resources. The European Optim Park project expanded access to Parkinson’s support via the REPISALUD directory, now used internationally. Policy influence is another key outcome. Research on COVID‑19, physical activity, and mental health has shaped recommendations adopted by bodies including Sweden's Health Technology Assessment Agency and the European Commission. Findings from Optim Park have informed NICE guideline NG252. Additional impacts include shaping national and international understanding of Huntington’s disease care needs, advancing person‑centred assessment tools such as the Living with Long Term Conditions Scale, and contributing to workforce development through the Wessex Academy of Skills in Personalised Care , which has trained more than 1,500 professionals. Finally, work on physical activity maintenance has expanded understanding of the barriers and enablers affecting digital health engagement among NHS staff, strengthening regional partnerships. Research projects ARC Wessex programme of research on Medicines Optimisation (MODIFY SPiDeR STOP-DEM) Read more ADOPTED: Personalised social and self-management support for better living with multiple long-term conditions in the community (CO-ACTION) Read more Social Prescribing Link Workers framework: supporting complex needs of adults living with physical and mental health long term conditions Read more Evaluating impact of personalised care at service at service and system levels: Learning from the Wessex Academy for Skills in Personalised Care (WASP) programme. Read more Understanding barriers and enablers of using the Living with Long Term Conditions scale as part of routine care for people from under-served groups living with type 2 diabetes Read more 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. Read more Avoiding care escalations through targeted care coordination for people with multiple long-term conditions – a knowledge mobilisation project Read more Deprescribing and Optimisation of Medicines IN Older people with Heart Failure and Frailty (DOMINO-HFF) Read more Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Read more ADOPTED: Treatment burden in people below the age of 65 with multimorbidity in primary care: A mixed methods (SPELL) Read more ADOPTED: (SIFT) Sensors in Fatigue Tracking in Parkinson’s. Exploring the relationship between perception of Fatigue and the performance of physical activities in people with Parkinson's with fatigue using wearable sensors Read more Reframing responsibility through public empowerment: examining environmental cues influencing poor diet Read more Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Read more Digital support for maintaining physical activity in people with long-term conditions Read more Development of policy recommendations to reduce the impact of COVID-19 on physical activity and mental health in individuals with multimorbidity: a mixed method study. Read more ADOPTED PROJECT: Understanding risk stratification of patients with chronic kidney disease (CKD) in primary care Read more ADOPTED PROJECT: Development of a decision aid for offloading device selection for people with diabetic foot ulceratio Read more ADOPTED PROJECT: Breast Cancer Choices: Evaluation and implementation of a digital patient-centred decision aid to support genetic testing in mainstream care. Read more ADOPTED PROJECT: Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) Read more ADOPTED PROJECT: MELD Read more POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study Read more Testing the living with chronic illness scale Read more Medicines optimisation Read more Interventions to support physical activity for adults (MOTH) Read more MODIFY: The development and iMplementation Of a multidisciplinary medication review and Deprescribing Intervention among Frail older people in primarY care Read more PARTNERS Project: Development and implementation of a digital tool for multisectoral support and management of long-term condition Read more ADOPTED PROJECT: EnablExercise in Crohns: A qualitativE study to uNderstAnd the Barriers and faciLitators to physical activity and Exercise IN children and adolescents with CROHN’S disease Read more ADOPTED PROJECT: ExACT-CF: Exercise as an Airway Clearance Technique in people with Cystic Fibrosis – A randomised pilot trial Read more ADOPTED PROJECT: Happier Feet Read more OPTIM Park - Optimization of community resources and systems of support to enhance the process of living with Parkinson’s Disease: a multisectoral intervention Read more Improving support for self-management (WASP) Read more Mental health hub projects Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study Read more Role of patient-assessed functioning as a predictor of health service use in patients with long term mental health conditions Read more Read our publications here Read more Publications Collaborative project: Improving review appointments for people with long-term conditions

dcda912e-45e2-47ca-a777-aad1c26161d1 ADOPTED PROJECT: Supported remote rehabilitation post Covid-19 COMPLETED: Development, deployment, and evaluation of a digitally enabled rehabilitation programme Chief Investigator: Professor Elizabeth Murray – University College London, Dr Henry Goodfellow – University College London Institute of Epidemiology & Health Care Project Team Members: Dr Katherine Bradbury – University Of Southampton, Dr Stuart Linke – Camden & Islington NHS Foundation Trust, Mr Chris Robson – University College London, Professor Fiona Stevenson – University College London Institute of Epidemiology & Health Care, Dr Manuel Gomes – University College London Institute of Epidemiology & Health Care, Dr Fiona Hamilton – University College London Institute of Epidemiology & Health Care, Professor Ann Blandford – University College London, Professor John Hurst – University College London, Professor Delmiro Fernandez- Reyes – University College London, Professor William Henley – University of Exeter Medical School, Dr Melissa Heightman – University College London Hospitals NHS Foundation Trust, Dr Paul Pfeffer – Barts Health NHS Trust, Dr William Ricketts – Barts Health NHS Trust, Ms Hannah Hylton – Barts Health NHS, Trust Dr Richa Singh – Barts Health NHS Trust, Ms Julia Bindman – Patient and Public Involvement contributor based in England. Publication: October 2025 - D esign and deployment of digital health interventions to reduce the risk of the digital divide and to inform development of the living with COVID recovery: a systematic scoping review Organisations Involved: Living With, NHS England, various NHS trusts, AHSN Wessex, UCL Partners. Start Date: 1st October 2020 End Date: 30th September 2023 Background: Covid-19 had affected nearly 300,000 patients in the UK by 6/7/20. Many remain symptomatic with breathlessness, fatigue, and anxiety for weeks or months. These symptoms can be improved with rehabilitation, but traditional, face-to-face models of service delivery will struggle to cope with these large numbersof patients. A digital approach is likely to be needed, but there are numerous challenges with this approach, including failures of implementation; anxieties around the digital divide/health inequalities; and concerns around low engagement with such programmes. Aim: To refine, deploy and evaluate a digitally- mediated, remote, supported rehabilitation programme for patients affected by Covid-19.Methods: We will combine research methods common to engineering and computer science (focused on developing a product that is safe, stable and meets user requirements) with those familiar to biomedical and health service researchers (focused on effectiveness and population impact). Thus, we will apply the Medical Research Council (MRC) Framework for development and evaluation of complex interventions (Phases 1, 2 and 4) Publications Experiences of user-centred design with agile development for clinically supported self-management of Long Covid Trajectories of functional limitations, health-related quality of life and societal costs in individuals with Long COVID: a population based longitudinal cohort study Additional funding The work from this project led to an additional Grant from NIHR SPCR Do community-based digital health inclusion programmes contribute to tackling health inequalities in disadvantaged population groups?

Knowledge Mobilisation What is Knowledge Mobilisation (KM)? "It's about getting the right information to the right people in the right format at the right time - by actively collaborating" 1/6 These web pages are here to help share the learning our Knowledge Mobilisation Fellows are accumulating through our ARC Wessex Knowledge Mobilisation (KM) Programme. We will be developing this page into a hub of resources. Please get in touch with any questions and share your thoughts about KM via this email Click to jump to the section you want on this page KM Fellows - This is us KM Resources (in development) KM Action Learning Projects As part of a £7.8 Million investment from the NIHR in October 2024, ARC Wessex appointed a Knowledge Mobilisation team including four KM Fellows. ARC Wessex worked with Hampshire & Isle of Wight (HIoW) and Dorset Integrated Care Boards, provider organisations and Health Innovation Wessex to create a programme directly relevant to needs of patients, service users, carers and health and care systems. The programme is supported by an advisory group of stakeholders, which meets regularly and monitors the delivery of the programme’s objectives: Develop the capability of the KM fellows through increased awareness of training needs and tailored capability development programmes Deliver multiple Action Learning Projects to capture insights about KM practices and learning about what works or does not work to share more widely Develop a cohort of KM Practitioners across Wessex to support capability and capacity building with our partners and systems Actively contribute to ARC Greater Manchester national meetings and Communities of Practice to work in partnership cross-ARCs. This is us Knowledge Mobilisation Fellows Phillipa Darnton is our Implementation and Knowledge Mobilisation Lead Rachel Tobin is our Knowledge Mobilisation Programme Manager Dr Jenny Roddis is a Research Fellow and is an Associate Professor in Community Health at the University of Portsmouth Dr Kate Lippiet is a Senior Research Fellow based in the School of Health Sciences, University of Southampton Email the team at: arcwessex@soton.ac.uk Download the Knowledge Mobilisation poster This is our resources and tools section We are busy creating lots of useful tools and resources for you to download and they will appear here as we develop them, so keep an eye out. Please share your thoughts of KM and/or sign up to the KM mailing list using this form Download If you like our KM umbrella above you can download the image here by clicking the box to the left Download Download - 6 Ideas about KM - Steps to Good Action Learning Projects The KM Fellows are ‘learning by doing’ and documenting their findings as Action Learning Projects. Each fellow has their own projects in which they are trialling different KM activities to learn about what works in which circumstances. This learning will help them to build KM capability and capacity within the ARC Wessex health and social care research system. Current Mental health: learning from providing support to the ARC Wessex Mental Health Hub to adopt knowledge mobilisation strategies for selected projects. Skills and knowledge: identifying the skills and knowledge needed for good knowledge mobilisation and developing a national framework for KM professionals and researchers. Co-producing clinical academic pathways in Dorset. Working with knowledge and information services across Wessex to develop a knowledge mobilisation community of practice Mapping what influences decision-making and use of evidence in residential care and home care. Supporting care home staff to understand the current evidence base on dehydration risk assessment and apply this to the care home setting, with development of resources to support staff in this setting undertake robust evidence reviews. Completed Working with Hampshire and Isle of Wight Integrated Care Partnership to develop and deliver a research assembly. Understanding research priorities for care home and home care providers in Wessex.

1810d0c8-e9bb-4a7c-9947-bbac48f4dd69 Mental Health, Workforce and Well-being Research Framework - ARC Collaboration More details on ARC Greater Manchester website What are we trying to do? The purpose of the document is to propose a pan National Insititue of Health Research (NIHR) Applied Research Collaboration (ARC) workforce focused mental health and well-being research framework. The aim is for the research framework to serve as a reference point to: Create coherence and comparability across the research carried out by NIHR ARCs Reduce duplication of work to reduce workforce burden. Adopting a coherent approach with an agreed purpose and broad aims will maximise the potential for cross-ARC collaboration, synergy and impact. While the focus of this research has a COVID-19 focus, the ambition is that this framework should facilitate research beyond the current pandemic, ensuring programme sustainability and longevity across the lifetime of this 5-year NIHR ARC funding cycle. This framework is not intended to be prescriptive, rather, it is a call to colleagues doing research under the NIHR ARC umbrella to use the framework as a point of reference in the development of research projects and programmes. It is a modular approach which allows flexibility to fit the scientific questions and data collection to the needs of the specific workforce and context being studied. Why is it important? The NIHR has invested £135 million to support 15 collaboratives covering every region within England. The NIHR ARC collaborative provides a framework within which key stakeholders are brought together locally and nationally with a mandate to tackle difficult issues facing our health and care system including: patient outcomes, effectiveness of our health and care system, system sustainability, and carrying out research with an applied focus to facilitate the rapid translation of research into practice. Moreover, the designation of ARC South London and ARC East of England as national leads for mental health and the establishment of a National Mental Health Priorities Network provides a further opportunity for effective collaboration. The NIHR ARC network presents a unique opportunity to develop a coherent and consistent approach to workforce mental health and well-being research which embodies these principles. What will we do? The framework is available for any NIHR ARC to review and align with, to guide the development of work that aligns to the fundamental principles of the NIHR ARC programme. Who are we working with? The NIHR ARCs and their research themes are set out in a table included in the document. In line with the framework, colleagues are encouraged to work collaboratively to maximise synergy, impact, and reduce duplication and burden. The origins of this framework arose out of conversation with colleagues from across NIHR ARC sites between April 2020-June 2020. The framework has been developed by: Kirsten Windfuhr (ARC Greater Manchester), Jane Ball (ARC Wessex), Karina Lovell (ARC Greater Manchester) Penny Bee (ARC Greater Manchester). Additional contributions and comments were gratefully received from ARC colleagues, and in particular Kristy Sanderson (ARC East of England). More information For further information about this work, please contact Alison Littlewood (Programme Manager). (ARC GM) Download - Mental Health, Workforce and Well-being Research Framework

74e67d37-7f00-423e-b571-0f47e11e3dca ADOPTED: Investigating the impact of food vouchers on diet composition and the prevention of childhood obesity Principal Investigator: Grace Grove Start Date: 10 May 2021 End Date: 9 May 2023 Background: Childhood obesity is increasing in the UK, and children from disadvantaged backgrounds are more likely to live with obesity. Obesity in childhood is linked to obesity in adulthood and poor health outcomes. It is therefore vital that we work to prevent and reduce inequalities in childhood obesity. We know that children from disadvantaged backgrounds are more likely to have poor diets, and children who have poor diets are more likely to be obese. Therefore, improving diet quality of young families may contribute to preventing the development of childhood obesity. Healthy Start is a scheme in England that aims to improve diet quality by providing vouchers to spend on milk, fruit and vegetables to disadvantaged families. However, the voucher value is modest and has not changed for a decade, despite increasing food prices. The scheme needs assessing to consider how it can best support families, as uptake among eligible families is very low, at 54% nationally. Health visitors support young families, and give extra support to those with increased needs, including those from deprived groups. This provides a unique opportunity to support young families who are at risk of childhood obesity and eligible for Healthy Start. The aim of this research is to understand if voucher schemes can have a positive effect on diet quality of disadvantaged families. This research will contain several elements, including reviewing the literature for evidence on the effectiveness of voucher schemes, speaking to families and health visitors, collecting diet and shopping information from families, and modelling the best approach to a modified Healthy Start scheme. Publications Systematic review of fruit and vegetable voucher interventions for pregnant women and families with young children | Public Health Nutrition | Cambridge Core

7c1c5828-e040-4058-a214-a3f1d860532c CLECC Toolkit and background: Creating Learning Environments for Compassionate Care (CLECC) CLECC is a training and development programme that has been tested and measured over several years in different care environments. It is designed to help improve the wellbeing of health and care staff and make a difference to patient care. It’s easier for you to care for patients when you feel well cared for yourself An important part of feeling well cared for is working in a team that supports you, where members care about how you are and want to help you It’s hard to provide good care to patients when you feel stressed, isolated and unsupported CLECC aims to provide the conditions in which every team member feels able to be compassionate with each other and with patients We have developed and tested CLECC in real-life health and care settings to see how practical it is to use and to understand its impact in different settings. Our results to date indicate its promise for supporting staff learning and wellbeing, and the delivery of compassionate care. Professor Jackie Bridges Professor Jackie Bridges, a nurse by background and now Professor of Older People’s Care at University of Southampton in the UK, has led this work for over a decade. She has worked closely with experts from different fields, particularly in nursing practice, to develop the CLECC programme and the accompanying research. This page contains a facilitator guide and accompanying resources to help health and care teams learn about CLECC and use it in a practical real-world setting. CLECC is constantly being improved and revised with feedback from nursing, care staff and managers so please get in contact with any feedback. You can fill out the form below or contact us direct. Contact us Email arcwessex@soton.ac.uk Or via our Twitter page Let’s start with the basics What is CLECC and what evidence do we have that it works? Our two videos below can answer those questions https://vimeo.com/786850064 https://vimeo.com/786850368 Guides – How do we do that? I want to use CLECC A guide for facilitators – 101834 A4 Brochure - CLECC Facilitator Manual AMENDS - Jackie Bridges - FINAL .pdf Download PDF • 1.14MB I want to show CLECC to a team and get them thinking about how to use it Slideshow to accompany facilitator guide – download PDF here (32 pages) CLECC Whole Team Introductory Learning Activities slideset .pdf Download PDF • 13.63MB I want to tailor how I use CLECC based on understanding people’s experiences at work Download the questionnaires below: Workplace Learning Questionnaire – for use by teams to identify team learning climate strengths and issues Team CLECC Workplace Learning questionnaire for care settings .pdf Download PDF • 108KB Climate for Care Questionnaire – for teams to evaluate team working climate CLECC Team Climate for Care questionnaire .pdf Download PDF • 107KB Please take time to tell us why you are using CLECC

fb112e5b-f7be-4ada-a37c-8e959119e1c3 Adolescent Resilience to OVercome Adversity: EmpoweRment and intervention development – the ROVER study Lead applicant: Anne-Sophie Darlington Co-applicants : Professor Graham Roberts , Professor Mary Barker , Dr Ivo Vassilev University of Southampton, Dr Catherine Hill Associate Professor in Child Health at the University of Southampton, Dr Jana Kreppner Associate Professor in Developmental Psychopathology within Psychology at the University of Southampton , Dr Luise Marino , Abigail Oakley Project Summary: Mental health conditions and symptoms in children and young people are increasing. Children and young people (CYP) with a chronic physical health condition often report having mental health problems such as feelings of anxiety and depression. A lot of research has focused on risk – circumstances that make it more likely for young people to experience mental health problems. In this project we want to focus on resilience - the young person’s ability to use their strengths and support from family and friends to overcome challenges in their life. Resilience has not often been a focus of support programmes for CYP with a physical condition. We would like to find out what experiences are common for young people living with physical health conditions, so that we can develop a support programme that applies across Child Health. We will use knowledge from these shared experiences to co-create the support programme with young people – called ‘tools for life’ (suggestion by CYP). We will also partner with national charities (partnerships have already been developed) who have worked with us before and who are very interested in supporting CYP around their mental health. The charity partners could help us to develop support components that are very specific to the condition (for example, fear of cancer coming back), which can be included in the overall support programme. Finally, work with young people has taught us that flexibility is very important: flexibility in when they access support, the way they access it and how it is offered to them. We will work together with young to shape this flexibility in support. The project will have four parts: Part 1 – Finding out what might work: List successful support components from 15 existing summaries of the evidence (reviews of the literature) to date and a report from Wellcome (an independent global charitable foundation which focuses on research), and identify the support elements (e.g., building confidence) which work well, and are acceptable to young people. Part 2 – Developing partnerships: Develop a partnership with local stakeholders (e.g., Paul Hughes and Laura Renishaw-Villier – Hub stakeholders; SolentMind, No Limits) and national charities (e.g., Children’s Cancer and Leukaemia Group, Kidney Care UK, Asthma UK). who can support the development of the support programme, both the general as disease-specific elements. We will hold several workshops with stakeholders to develop the partnership and agree on the goals of the partnership and ways to work together. Part 3 – Developing the support programme: We will co-create (develop together with young people) the support programme– ‘tools for life’ - to increase resilience. We will focus on flexibility in the way the programme is offered to young people, and when young people access the programme, to suit their needs. This flexibility will make young people more likely to use the programme. Part 4: Testing the support programme: We will test the support programme with 30 young people, to find out how many young people use the programme, if the programme is acceptable, how they use the programme, and how much they use the programme. We will also find out what the most important indicators of success are for the programme, such as young people experiencing less symptoms of anxiety and depression, and a better quality of life. What did we find out? The problem: Children and young people with a physical health condition are at a higher risk of developing mental health problems. Existing support programmes do not focus on building resilience – the ability to bounce back and stay mentally strong by using available resources and support networks when facing challenges. Also, many programmes fail to keep young people engaged. This project aimed to explore the support needs of young people and the best way to deliver a programme that builds resilience. What we did: We reviewed existing support programmes from the literature. Then we interviewed young people (32 with a physical health condition, and 25 without, ages 11-18 years), 12 parents of young people aged 11-17 years, and 5 healthcare providers from hospitals, charities and schools across the UK. A range of health conditions were represented, including cancer, heart disease, type 1 diabetes, and asthma. The interviews explored key stressors young people face, the support they need, and preferences for how support should be delivered. What we found: Priority stressors were related to managing the health condition, school/social life, and the future. Key support strategies identified included: 1) Normalisation through connection with other young people (e.g. chat forums), peer training (e.g. ‘living with a health condition’ in school curriculum); 2) Coping, including practical methods (e.g. knowing what to expect during hospital visits), and skills for navigating changes in peer relationships; 3) Prompt reassurance from healthcare providers during hospital visits, via text messaging service, and access to youth workers. Participants preferred a flexible approach that combined online resources with in-person support. Potential impact: Based on our findings, we have developed a prototype support programme that combines online resources with access to healthcare providers for timely reassurance and problem-solving. We are now seeking feedback from young people on this prototype and will use their input to create a full-scale version. If the support programme proves effective, it could help improve the mental health of young people with a physical health condition. What is the impact of this knowledge? • Relationship building: We established strong links with key stakeholders, including clinical colleagues across paediatric specialties at University Hospital Southampton (UHS), representatives from Hampshire and Isle of Wight ICB, Dorset HealthCare, and national and regional disease charities. These collaborations supported participant recruitment and informed intervention development. In the long-term, these relationships will be crucial in ensuring the widespread implementation of the intervention across the health and care system. • Embedding of EDI and PPIE: We conducted extensive PPIE work with community groups, including Winchester Youth Council, Breakout Youth, and Yellow Brick Road, ensuring that the voices of children and young people (CYP) from diverse backgrounds, including those from the LGBTQIA+ community and socioeconomically disadvantaged areas, were represented in the study. • Empowerment of young people: CYP gained a strong sense of empowerment and an enhanced awareness of their own resilience and well-being while contributing to the study. This impact was far-reaching, as the study included patients from UHS paediatric units, and students from local schools (Toynbee and Applemore) and colleges (Eastleigh College and Sparsholt College). • Novel insights into well-being: This study provided novel insights into resilience and well-being for CYP, enriching the broader narrative on CYP mental health. We also co-developed several prototype intervention proposals, which will pave the way for creating an intervention to improve resilience and mental health for young people within healthcare settings. What Next • We are currently: seeking feedback from young people on the prototype resilience intervention preparing a manuscript for submission to a high-impact a peer-reviewed journal. The findings from this study will be inform the development of a grant application, aimed at co-creating the full-scale resilience intervention with input from young people and their support networks. If the intervention proves effective, it will be implemented in practice to bolster mental health outcomes for young people with a physical chronic condition, while also reducing the burden on health and social care services.

596abb82-50f3-40e1-8d8d-a89073038260 ADOPTED: DASA - Domestic abuse and housing: local authorities' provision of safe accommodation for adults living with disabilities and/or long-term/life-limiting illness: a mixed-methods study Principal Investigator: Dr Michelle Myall , School of Health Sciences, University of Southampton. Team: Dr Sophia Taylor and Dr Susi Lund , School of Health Sciences, University of Southampton. Professor Parveen Ali University of Sheffield. Professor Lee-Ann Fenge Bournemouth University Mrs Samantha Dawson, Body Positive Dorset - Public and Patient Contributor Summary In 2025 an estimated 3.8 million adults experienced domestic abuse in England and Wales. Some people are at increased risk because of additional inequalities, vulnerabilities, and other factors. This includes adults with complex health and social care needs such as those living with physical disabilities and long-term/life-limiting illnesses. In April 2021 the Domestic Abuse Act was introduced in England. This created a new definition of domestic abuse to include any incidents of controlling, coercive, or threatening behaviour, violence or abuse between those aged 16 or over, who are or have been, intimate partners or family members regardless of gender or sexuality. Domestic abuse also includes psychological, physical, sexual, financial and emotional abuse. Domestic abuse can happen to anyone and is a leading cause of homelessness. In England, the Domestic Abuse Act has changed housing law to give priority accommodation to a person made homeless because of domestic abuse and requires local authorities to offer support in safe accommodation and alternatives to refuge provision. Refuges are not suitable for all victim-survivors, particularly those who have additional and specific health and care needs. There is little research on the housing needs of domestic abuse victim-survivors with physical disabilities, long-term conditions or life-limiting illnesses. Understanding the requirements of these groups and how local authorities are meeting their responsibilities under the Domestic Abuse Act is important and timely. What are the study aims? Working with people with lived experience, local authorities, and domestic abuse organisations we aim to: 1) identify and explore the experiences of victim-survivors living with a physical disability and/or long-term/life-limiting illness affected by domestic abuse and 2) understand how local authorities are meeting their responsibilities in providing safe accommodation and prioritising those made homeless because of domestic abuse. We will explore what local authorities already provide and how they are responding to the requirements of The Domestic Abuse Act. We will review published research and policies, map existing housing provision, and undertake interviews with key stakeholders. To ensure the voices of people with lived experience are included and listened to, we will hold creative workshops, using art, poetry or stories to explore their experiences. Findings will be used to develop a toolkit for local authorities and their partners to inform practice and improve user experience. What will happen to the study findings? We will work with our project partners and people with lived experience to identify who we need to engage and how to reach them. We will hold an event at the end of the study to share findings with stakeholders. Findings will be reported on social media for the wider public, and attendance at conferences and publications in academic and professional journals.

27d064e4-2601-492e-b882-a0ef85373d44 ADOPTED: (SIFT) Sensors in Fatigue Tracking in Parkinson’s. Exploring the relationship between perception of Fatigue and the performance of physical activities in people with Parkinson's with fatigue using wearable sensors Fatigue is one of the three most debilitating symptoms in Parkinson’s. Fatigue is difficult to diagnose, it often goes unrecognised, and is challenging to treat. The SIFT-PD study is exploring how fatigue impacts physical activity in people with and without Parkinson’s over a 3-day period. It asks participants to fill in fatigue diaries and uses wearable sensors to monitor the how people move over a period of three days. The sensors are small and light and worn on a belt. The sensors track activity (the amount, type and quality of movement). This research looks at whether the sensors can reveal how people’s movements change over the course of three days when they are fatigued. Furthermore, information from sensors might help understand what makes people fatigued and allow it to be measured. Knowing more about fatigue will help to recognise its impact and help develop ways of managing it better.

af50ff28-5b02-41fa-bc1f-f9689464860e EnTech (Enabling Technology): Investigating the enabling and inhibiting factors to the use of internet-based support tools for caregivers of people with dementia, and how to promote engagement. Chief investigator: Prof Chris Kipps Neurologist, Clinical Director R&D University Hospital Southampton Dr Sarah Fearn Senior Research Fellow NIHR ARC Wessex (Ageing & Dementia) University of Southampton Team: Prof Cathy Murphy, Professorial Fellow Research, School of Health Sciences University of Southampton Prof Eneida Mioshi Professor in Dementia Care Research University of East Anglia NIHR ARC East of England Jane Ward Dementia Friendly Hampshire Amanda Wollam Public contributor with personal and professional (social care) experience of caregiving to people with dementia Start: 1 October 2024 End: 31 March 2026 Partners: Do rset HealthCare University NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, University of East Anglia / NIHR ARC East of England, Dementia Friendly Hampshire, My Dementia Support. Our research We found that there were seven factors that influenced how able and/or willing care partners were to engage with online tools. Care partner-related factors included time, emotional impact & preparedness, support networks and signposting, personal preferences, the relevance and sensitivity of information, and digital access and skills. Website-specific factors included design and usability, as well as trust and credibility. Public involvement We are working with caregivers of people with dementia and local dementia charities in this project. On our team, we have two public contributors who both have lived experience of caring for someone with dementia. They will help us to design and carry out the research, to make sure it is relevant to caregivers and benefits them. 60 caregivers will participate in the research in interviews, focus groups or workshops. What we did with our new knowledge We have worked with the research teams / developers of the DemCon website and the FTDToolkit (both internet-based support tools) to improve their tool. We have worked with participants to co-produce recommendations for the design and implementation of internet-based support tools for carers of people with dementia in the future. We are connecting with other research teams / developers of internet-based support tools to advise on their design and implementation (including in France and Australia). We are looking to share the findings widely with research teams / developers working in this area to ensure design and implantation of these resources is maximised. We have contacted national charities and funders in the area to make them aware of our findings. Email lead researcher