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Understanding the psychosocial needs and trajectories of older adults (>64 years) with alcohol use disorder (AUD) from hospital back into community Team: Kinda Ibrahim is a lecturer and a pharmacist at the Faculty of Medicine and the Deputy Lead for the Ageing and Dementia Theme within the NIHR ARC Wessex Jay Amin is Associate Professor in Psychiatry of Older Age at the University of Southampton and an honorary consultant in Old Age Psychiatry at Southern Health NHS Foundation Trust. Sue Latter is a Professor of Health Services Research and a nurse by background and an expert in medicines optimisation research. Simon Fraser is an Associate Professor in Public Health at the University of Southampton. Ruth Bartlett is a Professor at the University of Southampton and Director of the University of Southampton's Doctoral Training Centre in Dementia Care, and a lead coordinator for the ARC Wessex Faculty. Rosemary Lim is an Associate Professor at school of pharmacy, University of Reading. Michelle Board is an Associate Professor in Nursing Older People at the Faculty of Health and Social Science at Bournemouth University. Starts: October 2022 Ends: September 2024 Lay Summary Most people with dementia or mild cognitive impairment (MCI) have multiple chronic conditions and take five or more regular medications (polypharmacy). Polypharmacy in people with dementia/MCI can lead to increased risk of drug interactions, side effects such as falls and cognitive decline, and sometimes hospitalisation and death. Some types of medications (such as strong anticholinergic drugs) can increase risk of developing dementia and cognitive impairment. It is estimated that over £400 million is spent annually in the UK in hospital admissions related to harm from medications. Identifying harmful medications and stopping or switching to safer alternative (deprescribing) has the potential to reduce the risk of developing dementia and improve outcomes for people already living with dementia. However, to date, deprescribing interventions for people with dementia/MCI have focused on specific drug classes (e.g., anti-psychotics) or have been limited to inpatient or nursing home setting. In the UK, it is estimated that 61% of people with dementia live at home where medication is a part of daily living. Most studies also focused on medication-related outcomes (e.g. discontinuation of high-risk medications) rather than patient-centred outcomes, and did not involve the person with dementia and their carer. Therefor it is essential to understand how primary care staff could involve people with dementia/MCI and their caregivers in shared-decision making about stopping medications safely. The aim of this study is to develop a primary care–based deprescribing intervention focusing on increasing shared-decision making targeting people with dementia/MCI and their caregivers. The proposed research will include two phases: First, a search of published literature to understand how effective deprescribing interventions among people with dementia/MCI, with a focus on what works or does not work for this population. Secondly, we will conduct interviews with people with dementia/MCI and their caregivers as well as healthcare professional. We want to understand how deprescribing can be initiated and monitored among people with dementia or MCI in primary care setting and how patients and their caregivers could be involved in decisions about medication taking. Then we will use the information we gather to identify the key elements/factors that make deprescribing and shared-decision making possible in primary care. We will develop an intervention which will then be refined in a future study, subject to funding, through a series of workshops and rapid iterations with key stakeholders to discuss its content, format, style and delivery. Read all Mental Health Hub projects

df3a87da-ba5f-40cd-8109-9f23cf0662d9 COMPLETED: Promoting person-centred care using the CHAT&PLAN conversation guide 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

Dr Naomi Klepacz & Professor Jane Ball (School of Health Sciences, University of Southampton) < Back Addressing underlying workforce challenges is essential to meet the nation’s mental health care needs Mental Health Dr Naomi Klepacz & Professor Jane Ball (School of Health Sciences, University of Southampton) What is it like to be part of the mental health nursing workforce? We argue that it is only by understanding the reality of the job – its highs and its lows – that we will be able to grow the mental health workforce and hold on to experienced nurses needed to deliver care well. Demand for mental health services is at an all-time high, yet many people cannot access vital services and face long waits for treatment ( 1) . Nurses comprise one-in-three of the NHS mental health workforce (2) . They are fundamental to providing mental health services and a positive patient experience. However, mental health nursing vacancies represent a third of all nursing vacancies (3) , and while there has been a welcome increase in the number of mental health nurses in recent years, the rate of increase still falls behind that seen in adult and children’s nursing (2) . There are also significant regional differences in mental health nurse staffing that seem disconnected from the level of demand for services (2) . The bottom line is that both now and, in the future, we need more nurses working in mental health – which means expanding supply and ensuring we have the conditions needed to retain the experienced staff we already have. The NHS Long Term workforce plan proposes an investment in expanding training places by 2028/29, with a promised increase of 38% for mental health nursing (4) . A substantial change, but lower than that promised to other fields of nursing. Research has demonstrated the link between nurse wellbeing and patient experience of care, staff and patient safety, sickness absence, job satisfaction and leads to staff leaving the workforce (5) . Physical or mental health, burnout or exhaustion currently follow retirement as the top reason nurses leave the profession (6) . The 2022 NHS Staff Survey reports that 49% of mental health nurses felt unwell because of work-related stress in the last 12 months, 61% came to work despite not feeling well enough to perform their duties, 45% reported often or always finding their work emotionally exhausting, and 28% experienced physical violence from a patient or service user in the last 12 months. In addition, 70% work additional unpaid hours over and above their contracted hours. Therefore, understanding the working lives and wellbeing of the mental health nursing workforce is critical for patient care quality, patient nurses, and the growing nursing workforce. Change is urgently needed to meet the nation’s demand for mental health care, but change requires commitment, investment, and, above all, an understanding of, and sensitivity to, the underlying issues. NHS England made a commitment to the growth and development of mental health nursing (7) , and recommendations from this report together with those from the Nuffield Trust (2) say a more accurate and realistic image of the mental health nursing role is needed, with clarity on career options, work setting and the range of people mental health nurses care for, to challenge false stereotypes. In our research into the working lives and wellbeing of nurses in mental health, we have spoken to some truly inspirational nurses who describe working as a mental health nurse as “the best job in the world”. While both patients and nurses place value on therapeutic relationships (8) , the importance of these relationships appears to be poorly understood by those who have not been touched by this experience (9) . Yet the absence of such relationships in mental health care can impact both patients (who may feel more disconnected, alone or vulnerable) and nurses - who are less likely to feel job satisfaction or take pride in the care provided ( 8 , 10 ). Unlike other fields of nursing, mental health nurses argue that it is this patient familiarity, the knowledge and experience gained through patient interaction, rather than treatment-focused ‘skills’ that make mental health nurses unique and indispensable while also making the role of mental health nurses challenging to define and difficult to evidence. Nurses don’t just deliver the intervention; they are the intervention. This is why we are undertaking a study (with funding from the NIHR ARC Wessex Mental Health Hub ) to provide insight into the work lives, wellbeing and working context of nurses in mental health services so that action can be taken (through local changes and/or national policy) to enable a better experience of work. When nurses feel good about the work they do and are given what they need, the benefits – to staff, organisations, and patients – are many. As part of this work, a national survey of the mental health nursing workforce is currently underway. This survey is open to nurses on the Nursing and Midwifery Council (NMC Register) providing mental healthcare to any patient group, in any setting, and for any health and social care provider. It is completely anonymous and will take 15-20 minutes to complete. This study is supported by the National Institute for Health and Care Research ARC Wessex. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care. Professor Jane Ball Dr Naomi Klepacz References: 1. Care Quality Commission. Rising demand for mental health care [Internet]. 2022. Available from: https://www.cqc.org.uk/publications/major-reports/soc202021_01d_mh-care-demand 2. Palmer W, Dodsworth E, Rolewicz L. In train? Progress on mental health nurse education [Internet]. Nuffield Trust; 2023 May. Available from: https://www.nuffieldtrust.org.uk/sites/default/files/2023-05/Mental%20Health%20nursing%20update_WEB_FINAL.pdf 3. NHS Digital. NHS Vacancy Statistics England, April 2015 - March 2023, Experimental Statistics [Internet]. 2023. Available from: https://digital.nhs.uk/data-and-information/publications/statistical/nhs-vacancies-survey/april-2015---march-2023-experimental-statistics 4. NHS England. NHS Long Term Workforce Plan [Internet]. 2023 Jun. Available from: https://www.england.nhs.uk/wp-content/uploads/2023/06/nhs-long-term-workforce-plan-v1.2.pdf 5. Maben J, Adams M, Peccei R, Murrells T, Robert G. Patients’ experiences of care and the influence of staff motivation, affect and well-being. NIHR; 6. Nursing & Midwifery Council. 2023 NMC Registere Leavers Survey (Summary Report) [Internet]. Nursing & Midwivery Council; 2023 May [cited 2023 Jul 10] p. 1–36. Available from: https://www.nmc.org.uk/globalassets/sitedocuments/data-reports/may-2023/annual-data-report-leavers-survey-2023.pdf 7. Health Education England. Commitment and Growth: advancing mental health nursing now and for the future [Internet]. Health Education England; 2022 Apr p. 37. Available from: https://www.hee.nhs.uk/sites/default/files/documents/Commitment%20and%20Growth%20Advancing%20Mental%20Health%20Nursing%20Now%20and%20for%20the%20Future.pdf 8. Simpson A, Hannigan B, Coffey M, Barlow S, Cohen R, Jones A, et al. Recovery-focused care planning and coordination in England and Wales: a cross-national mixed methods comparative case study. BMC Psychiatry. 2016;16(147). 9. Clarke L. The therapeutic relationship and Mental Health Nursing: it is time to articulate what we do! J Psychiatr Ment Health Nurs. 2012;19:839–43. 10. Coffey M, Hannigan B, Barlow S, Cartwright M, Cohen R, Faulkner A, et al. Recovery-focused mental health care planning and co-ordination in acute inpatient mental health settings: a cross national comparative mixed methods study. BMC Psychiatry. 2019;19(115). Previous Next

e3705a45-1f6d-4b9b-9466-a536d5b062ff COMPLETED: Shift Pattern Feasibility Feasibility of collecting and using nursing shift patterns data in acute, community and mental health wards Principal Investigator: Dr Chiara Dall’Ora Team members: Dr Chiara Dall'Ora (Senior Research Fellow in Nursing Workforce, School of Health Sciences, University Of Southampton), Professor Peter Griffiths (Chair of Health Services Research, School of Health Sciences, University of Southampton), Ms Nicky Sinden (Head of Nursing Workforce at Portsmouth Hospitals NHS Trust), Dr Sarah Williams (Associate Director of Research & Improvement, and Academy Lead at Solent NHS Trust), Ms Catherine Smith (Associate Director Workforce Research and Innovation, Southern Health NHS Foundation Trust), Professor Jane Ball (Deputy Head of School (Research & Enterprise), School of Health Sciences, University of Southampton), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Mr Anthony Austin, PPI contributor Start: 1 October 2020 Ended: 31 December 2022 Partners: University of Southampton, Portsmouth Hospitals NHS Trust, Solent NHS Trust, Southern Health NHS Foundation Trust. UNISON, Royal College of Nursing Lay summary Nurses and care assistants form the largest group of NHS staff. Most work in services that provide care across 24 hours of the day. Research indicates that the organisation of nursing shift patterns might affect the productivity of health services. The introduction of long shifts in nursing was offered as a strategy to maintain service levels while eliminating overlaps. However, research has found that long shifts are associated with higher rates of sickness and poorer patient care. So far, there has been little research exploring individual factors influencing shift work experiences among nurses, and research has been largely confined to acute hospitals. What did we learn/find out? Working long shifts (12-h or longer) leads to more burnout for nursing staff Having little choice around shift patterns leads to more nursing burnout Nurses working 12-h shifts reported lower choice around shift patterns than nurses working 8-h shifts When wards in Mental Health and community hospitals operated with high proportions of long shifts, there were higher rates of patient incidents This was particularly the case for self-harm incidents and incidents of patient disruptive behaviour What difference can this new knowledge make? It will help nurse managers and those in charge of creating nursing rotas It will help nurses working in inpatient settings choose their shift patterns It will keep patients safer because they will be cared for by nurses who are less tired Why is this important for patients, health and care providers and policy makers ? Nursing burnout is at an all time high, and we provided evidence that can help alleviate burnout Improving patient safety is of paramount importance for any health organisation, and our findings support changes to work organisation to improve patient safety What we are going to be doing next? We will keep disseminating our findings by publishing further papers We are now co-developing feasible changes to shift patterns with nursing staff and their managers as part of our new project We have applied for further funding to maximise analysis of datasets we have created as part of this study Publications https://human-resources-health.biomedcentral.com/articles/10.1186/s12960-022-00731-2 Shift work characteristics and burnout among nurses: cross-sectional survey | Occupational Medicine | Oxford Academic https://onlinelibrary.wiley.com/doi/10.1155/2023/6626585 https://onlinelibrary.wiley.com/doi/10.1111/jocn.16974

Listen to the issues and opinions around health and care Podcasts If you want to know more about the research we do and some of the issues and ethical considerations around health an care we have a series of podcasts which often explore issues is greater depth. Often you will be able to hear from different voices in the community who can provide a fresh perspective on conditions or experiences of health and care in different settings. Sam Belfrage a PhD Student with ARC Wessex has produced a series of SIX podcasts with patient experts and people with life experience of health conditions. The Power of Empowerment series looks at many aspects of health and care Episode 1 Long term conditions Episode 2 Research and co-production Episode 3 Pregnancy, birth & beyond Episode 4 Moving from child to adult services Episode 5 Chronic Pain: Patient & Practitioner Episode 6 Reflections on empowerment

0f5a7259-3857-4aa4-8b2c-0c628421e76a Interventions to support physical activity for adults (MOTH) Maintenance Of physical aTivity beHaviour (MOTH) programme Also see Digital support for maintaining physical activity in people with long-term conditions and Non-digital support for maintaining physical activity in people with long-term conditions – within Maintenance Of physical acTivity beHaviour (MOTH) programme Principal Investigator: Professor Mary Barker Deputy Lead: Professor Mary Barker ( Professor of Psychology and Behavioural Science) Professor Maria Stokes (Professor of Musculoskeletal Rehabilitation, School of Health Sciences, University of Southampton, UK Head of Active Living Research Group) Team members: Dr James Gavin, Luisa Holt, Professor Jo Adams , Dr David Culliford , Professor Suzanne McDonough (Royal College of Surgeons in Ireland; Visiting Prof at UoS), Dr Aoife Stephenson (Royal College of Surgeons in Ireland), Dr James Faulkner (University of Winchester), Mr Ranj Parmar , Mr Jem Lawson (Public contributors), Dr Euan Sadler , Dr Dorit Kunkel , Dr Simon Fraser , Professor Sandy Jack , Professor James Bilzon (University of Bath), Dr Simon Jones (University of Bath), Dr Enhad Chowdhury (University of Bath), Mr Jem Lawson and Mr Ranj Parmer (public contributors) Start: October 2019 Ends: 31 December 2023 Project Partners: Royal College of Surgeons in Ireland, University of Winchester, Bournemouth University, University of Portsmouth, Wessex Clinical Research Network, University of Bath, NHS, AHSN Lay summary Physical activity is an important part of managing and preventing long-term conditions (LTC), through supporting people to remain active, improve symptoms and reduce future problems. A variety of digital and non-digital programmes and tools exist, such as exercise referral schemes and websites or mobile applications, to support people to start being active. However, these programmes/tools are often less effective at helping people to stay active in the longer term. The MOTH programme aims to identify existing digital tools and their components that help people with LTCs to stay active and understand the factors that support or inhibit their use in the NHS. The programme is also working with exercise referral schemes to evaluate and understand the needs of participants to support physical activity after the scheme has ended. Ultimately, the MOTH programme aims to develop digital and non-digital support that is usable, accessible and relevant to help people with LTCs to stay active. In doing so, the programme is aligned to many of the NHS long-term plan priorities, such as ‘responding to population needs’, ‘supporting people to age well’ and ‘increasing equitable provision of resources’

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.

60f9f2f4-ec86-4835-abb5-cb3e74214a4f COMPLETED: Domestic Abuse and Life-Limiting Illness: identifying and supporting adults at risk (DALLI Study) Principal Investigator: Dr Michelle Myall Team Members: Dr Michelle Myall (Principal Research Fellow ARC Wessex, School of Health Sciences, University of Southampton); Sophia Taylor (Senior Research Assistant , School of Health Sciences, University of Southampton); Dr Susi Lund (Visiting Research Fellow, School of Health Sciences, University of Southampton); Karen Drake (Matron in Specialist Palliative Care, Salisbury NHS Foundation Trust); Sally Dace (Patient and Public Representative) Start : 1 January 2021 Ends: 30 September 2024 Project Partners: University of Southampton; University Hospital Southampton NHS Foundation Trust (UHS); Weldmar Hospicecare, Dorset; Salisbury NHS Foundation Trust; Yellow Door Domestic and Sexual Abuse Charity; Southampton City Council; The Rowans Hospice, Portsmouth; Body Positive, Dorset ; Citizens Advice Southampton; Hampshire Macmillan Cancer Support Citizens Advice Service Summary of Findings Why the study is important In England and Wales an estimated 2.4 million adults experience domestic abuse (DA). People living with a life-limiting illness (LLI) are at increased risk of DA because they are vulnerable, frail, isolated and dependent on others. They may spend long periods of time in the home, in close proximity to the abuser, who is often their carer, and have difficulty accessing help and support. To date, little attention has been paid to the experiences of those living with a life-limiting-illness who are victims of DA, their specific needs and the extent to which these are being met by statutory and specialist and non-specialist services. Furthermore, we know little about the views and experiences of health and social care professionals who provide support to them. What we did Between 2021-2024 we conducted the mixed-method DALLI (Domestic Abuse and Life-Limiting Illness) study, which explored DA where it co-exists with LLI. Initially we carried out scoping work comprising a literature review; survey to map local service provision; and held informal discussions with those with lived experience, health and social care professionals working in hospice and palliative care services, and specialist domestic abuse organisations. This helped to identify research priorities and focus of the study. What we found Our scoping review highlighted the impact that DA has on mental health and wellbeing which can result in delays in screening, leading to late diagnosis and an illness advancing with only palliative rather than curable treatments being available. We know many people living with a LLI and at end-of-life are likely to access palliative and other health and care services frequently. Trusted relationships with healthcare professionals (HCP), enhanced by continuity of care can lead to the development of interpersonal trust between patient and HCP, increasing the likelihood of disclosures of abuse. However, interviews with health and social care professionals highlighted a lack confidence to ask about abuse, and challenges with recognising signs of abuse amongst the complexities of DA in the LLI context. This highlighted the need for increased training, education, and continued professional development in this area. Working with hospice and palliative care professionals, specialist and non-specialist third sector organisations, and people with lived experience, we established a Community of Practice and held a series of workshops with them over 15 months to co-develop the DALLI Toolkit. We also conducted interviews with health and care professionals and people from relevant third sector organisations to help inform Toolkit content. The Toolkit, which complements existing safeguarding policies, aims to increase practitioners’ confidence and understanding offering resources to support health and social care professionals working with people with a LLI identify and respond to DA encountered in practice. Outcomes Following piloting and evaluation the Toolkit has been adopted in a small number of hospice and palliative care settings in Wessex, and following discussions with Marie Curie’s Head of Safeguarding, is to be implemented in Marie Curie Hospices nationwide and included on their website as a resource for healthcare professionals. The Toolkit is also being used by domestic abuse services in local authorities and as an educational resource for social workers at a local university. Next steps It is now our aim to achieve greater impact and encourage adoption and spread to extend the Toolkit’s reach to other hospice and palliative care organisations and potentially other health and social care services. We have secured Impact Funding from Marie Curie to enable us to work with a professional production company to create a short promotional film about the DALLI Toolkit, and its use in practice, and hold a launch event in the Autumn 2024 to publicise the film and Toolkit and encourage wider adoption. Embedding and integration of the Toolkit will enable health and social care professionals to improve understanding of the complexities of DA in the LLI context and increase confidence to ask about and respond to DA. WATCH: ITV News report here Please see below copies of the DALLI toolkit and quick reference guide DALLI Toolkit v6.0 030924[58] .pdf Download PDF • 1.26MB DALLI Toolkit Quick reference Guide v0.3 140623[9] .pdf Download PDF • 260KB Publications: Domestic Abuse in the Context of Life-Limiting Illness: A Systematic Scoping Review: Michelle Myall ,1,2 Sophia Taylor,1,2 Sally Wheelwright,3 and Susi Lund1 1School of Health Sciences, University of Southampton, Southampton, UK 2NIHR ARC Wessex, University of Southampton, Southampton, UK 3Brighton and Sussex Medical School, University of Sussex, Brighton, UK Correspondence should be addressed to Michelle Myall; m.myall@soton.ac.uk https://doi.org/10.1155/2023/1841944

c3f60ada-92b2-427a-992e-e9d18e00b011 ADOPTED: Mobility assessments in hospitalised older adults: study protocol for an e-survey of UK healthcare professionals PhD Candidate: Catherine Wharfe University of Portsmouth; Team: Maria Perissiou University of Portsmouth; Zoe Saynor University of Portsmouth; Jim Briggs University of Portsmouth; Carolina Gonçalves University of Portsmouth & University Hospitals Sussex NHS Foundation Trust Start : 1/11/2023 Ends: 1/05/2025 Abstract Hospitalisation in acute care poses a significant risk of adverse outcomes in older adults, including loss of functional independence, disability, and death. Research carried out in hospitalised older adults suggests functional mobility tools or scales can predict adverse events and care needs in this population, which facilitates prompt escalation of care and discharge planning procedures. As such, a need to develop a standardised methodology for assessing or measuring mobility has been recognised. However, the degree to which standardised mobility tools are routinely used, how data is collected, and/or which clinical assessment processes are utilised in hospitals across the UK is currently lacking. The aim of this national survey is to identify the current practice of mobility assessment in older adults admitted to NHS Trusts and Private Health Organisations, with a view to informing further research on a standardised approach or best practice guidelines to assessing or measuring mobility in hospitalised older adults.

33e12535-88ee-441a-8d7b-06392d99b190 ADOPTED PROJECT: Understanding risk stratification of patients with chronic kidney disease (CKD) in primary care ADOPTED PROJECT: Understanding risk stratification of patients with chronic kidney disease (CKD) in primary care Principal Investigators: Professor Hazel Everitt , Head of the Primary Care Research Centre, Deputy Head of the School of Primary Care, Population Sciences and Medical Education at Southampton University and Deputy Academic Capacity Development Lead for the NIHR School of Primary Care Research. Dr Kristin Veighey , Academic Clinical Fellow in General Practice, and Honorary Senior Clinical Lecturer, University of Southampton. Co-Associate Director of the Southampton Academy of Research (SoAR). Team: Dr Simon Fraser Associate Professor of Public Health, and Consultant in Public Health Dr Kinda Ibrahim, is an Academic Pharmacist and Senior Lecturer within the Primary Care Research Centre at the University of Southampton. She is the deputy lead for the NIHR Applied Research Collaboration (ARC) Wessex Ageing and Dementia Theme and the Associate Director for career development Dr Emma Teasdale Research Psychologist and Qualitative Research Fellow in Primary Care Dr Michelle Myall, is a Senior Research and Implementation Fellow at NIHR Applied Research Collaboration (ARC) Wessex Kate Henegan-Sykes (co-applicant) is a member of the Primary Care Patient and Public Involvement and Engagement (PPIE) group Charles Pickering (collaborator) is a patient with chronic kidney disease. Starts: 01/12/2023 Ends: 30/11/2025 Funded by: NIHR School for Primary Care Research The kidneys are 2 small fist sized organs which sit in the back. Kidneys clean the blood. They take away extra water and waste and turn it into urine or ‘wee’. Chronic kidney disease (CKD) is a long-term condition. In CKD, the kidneys do not work as well. More than 1.8 million people in England are known to have CKD. It is thought there may be 1 million more who have not yet been diagnosed. This is because early CKD has no symptoms. So it's important to test for CKD in people who might have it. This includes people with diabetes, high blood pressure, and a family history of CKD. People with CKD are more likely to have, and die from, heart attacks and strokes. For a small group of people their CKD will get worse over time. This could mean that they need ‘renal replacement therapy’ (RRT). This is where a machine (dialysis) or a kidney transplant (someone else’s kidney put into them in an operation) does the job of the failed kidneys. This allows the person to survive. These treatments are very expensive. Along with transport to treatment centres they cost the NHS around £780m every year. Having CKD can also reduce a person’s quality of life. People who have, or might have, CKD should have the protein in their urine measured. This is a good way to see if kidneys are damaged. It can be used along with a blood test result to work out a ‘risk score’. This score can help to show which people are at most risk of their CKD getting worse. This means that they can be offered medicines and told about possible changes to their lifestyle and diet that might help reduce their risk. The score can also be used to reassure people who have a low risk. We want to understand why working out a person’s risk of CKD is not always done in general practice (GP) surgeries. To do this, we will first interview 20-30 GPs and practice nurses. These are the people who would do the risk scores for patients. They will come from GP practices across Wessex and Leeds. We will then hold 4-5 focus groups with GP practice teams, including GPs and nurses, but also pharmacists, practice managers, and reception/administration staff. We will ask them about how procedures could be improved to make sure CKD patients have their risk measured. This information will help us to work out how to improve the way that we measure risk in CKD.We will then plan a second study to test a new process. This new process will be developed from what we find out in this study.

07abb52d-c8db-43f8-85d4-b392467d6ada COMPLETED: Developing training for person-centred care: adapting the Chat & Plan for use in domiciliary care Chief Investigator: Dr Teresa Corbett, Visiting Research Fellow, School of Health Sciences , University of Southampton and Senior Lecturer in Psychology, Solent University. Co-Investigators: Professor Jackie Bridges, Professor of Older People's Care, School of Health Sciences, University of Southampton Dr Nicola Andrews, Research Fellow - NIHR ARC Wessex , School of Health Sciences, University of Southampton Cindy Brooks, Research Fellow - NIHR ARC Wessex , School of Health Sciences, University of Southampton Dr Pippa Collins, Advanced Clinical Practitioner, Post Doc Research Fellow – NIHR ARC Wessex, School of Health Sciences, University of Southampton Collaborating organisations: Hampshire County Council – Maria Hayward, Learning & Development Service Manager and Implementation Champion Bournemouth, Christchurch and Poole Council – Alison Pearman, Service Improvement Manager Wessex AHSN – Cheryl Davies, Senior Programme Manager (Healthy Ageing) Skills for Care – Debbie Boys, Locality Manager – Hampshire, Southampton, Portsmouth and Isle of Wight Purple Lilac Healthcare - Violet Chatindo, Registered Manager Right at home – Andrew Davis, Registered Manager Partners in Care – Kate Blake, Manager Start date: 1/6/23 End date: 1/9/24 Aim of the research The aim of this research is to adapt a communication tool for use by social care workers and to find out what type of information we should include in a training package for social care workers providing domiciliary care (e.g., practical help and support in the community) to support its use. This study will help us to make a training course that we can try out with social care workers in future research. Background to the research We made a tool to help healthcare staff to talk to older adults about their needs. This tool has 8 steps that should be followed in a discussion with people about their needs and personal goals. However, the tool might need to be changed if we want to use it in domiciliary or other social care settings instead of healthcare (e.g., the NHS) settings. In this research, we want to see if we need to change the tool so that it can be used by social care workers. We also want to find out about how we might be able to train social care workers to improve how they talk to older adults about their needs. Design and methods used We will study existing courses, workshops and training so that we can find out more about how we should plan our training. We will also interview social care workers to find out more about what they do in their role. We will ask them to tell us what they think of the tool, and what changes we might need to make to it. Up to 15 social care workers will take part. We will make a draft of what will be included in the training. Experts will discuss the training and we will make changes based on what they say. We will interview some more social care workers to find out what they like or do not like about the training plan we have made. Patient, public and community involvement Members of the public have been part of the study so far in many ways. They have helped us to make the tool that we will ask social care workers about. We will also work with experts in social care who have agreed to help us to in a number of ways. These include: · Looking over content and letting us know what they think. · Coming to project meetings. · Helping to plan the study. · Looking over study information that we will send to participants. · Helping us to make sense of the research findings. Dissemination We will share our findings at conferences and at events with audiences who are interested in our study. We will also write about our findings for academic and public audiences via Communications channels (e.g. relevant websites, social media, newsletters). We will also share findings with those working in social care, e.g., via domiciliary care forums (each local authority has one) and with Learning and development teams in local authorities. What did we find out? An adapted version of the CHAT&PLAN is viewed as feasible to use in homecare settings. We needed to change some of the language to make it more relevant to homecare settings and improve clarity. There is an appetite and need for co-designed, evidence-based, person-centred care training in homecare settings. Much of the existing training on this topic is not specific to homecare workers and may not always apply to their role. CHAT&PLAN provides an overview of skills that should be used flexibly, depending on the needs and preferences of the service user. The training will emphasise that it may not work well for all service users, and further communication skills training is required alongside this course. We identified key factors we would need to consider in the development of a training package: 1.Teaching style and methods should be practical to support skills development. Training should involve learning from each other and reflection. 2.The training must be viewed as relevant to the homecare workers and be pitched at a level that is clear and easy to understand. 3.Buy-in from managers, organisations and service users is required for homecare workers to attend sessions, and then apply skills in practice. What did we do with this new knowledge? •Study summary was shared with supporting organisations and participants •Systematic review paper has been submitted to PLOS One Where next? We did not have time in this study to test out the training with homecare workers. This is important as we want to know how the training works in practice. We will need to test the package to see what homecare workers and managers think of the entire set of materials and methods used in the training. We will then apply for funding to see whether the training is acceptable and feasible in practice and improves the quality of person-centred care provided by homecare workers.

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