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62657f5f-1a8d-4fc4-8b32-bd364cb93d3a ADOPTED PROJECT - PREMAC 2 STUDY Development and application of Patient Report Experience Measure for patients accessing ACute oncology services: Aim This study will test a newly designed patient report experience measure (PREM) questionnaire for acute oncology (AO) across three NHS Trusts. Objectives The study will test: i) the acceptability of the PREM instrument to patients; ii) how well the PREM questionnaire performs, its validity and reliability, when completed by patients who have received care from different clinical teams; iii) the capability of the PREM instrument to identify variations of patient experience between participating trusts, and; iv) how easily the PREM questionnaire can be used to collect information across several trusts that might deliver services in different ways. Background People with cancer often need to access AO services for serious problems caused by their disease or treatment. Although trusts are required to obtain feedback from patients who receive AO services, there is currently accepted way of collecting this information. A preceding study, the PREMAC study, designed the new PREM questionnaire that we will test in this subsequent study. Design and Methods The study will include three NHS Trusts, and a sample of at least 100 completed responses will be required for statistical analysis from each site. Patients who have accessed AO services will be sent an electronic link to the questionnaire by text message or email, between one and two weeks following their care. Participants will be eligible if they: have a confirmed diagnosis of cancer; are 18 years old and above; have sought urgent care/advice for problems for cancer or its treatment; have accessed AO service via a triage helpline, a bespoke AO unit or via ED. Only anonymised information will be collected from respondents. Study outputs The main study output will be a validated PREM, which can be used to explore and benchmark the quality of AO services at trusts across England with different service delivery models.

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

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

13151434-a7e4-409a-b026-23a834ceed8f COMPLETED: IDA: Implementing a Digital physical Activity intervention for older adults Principal Investigator : Dr Kat Bradbury Project team : Dr Max Western , Dr Stephen Lim , Linda Du Preez , Fay Sibley , Dr Judith Joseph , Professor Lucy Yardley , Dr Chloe Grimmett , Dr Neil Langridge , Christian Brookes , Helen Fisher, Cynthia Russel, Asgar Electricwala, Tom Stokes, Professor Maria Stokes , Dr Paul Clarkson , Cherish Boxall, Dr Katherine Morton , Sara Bolton , Dr David Attwood. Partners: Hampshire and Isle of Wight Healthcare NHS Foundation Trust (Southern Health NHS Foundation Trust), Dorset County Hospital NHS Foundation Trust , Oxford Health NHS Foundation Trust, Health Innovation Wessex (Wessex AHSN), University of Southampton, NHS England, Energise Me, Active Partnerships, Live Longer Better. Publication: Implementing a Digital Physical Activity Intervention for Older Adults: Qualitative Study Summary This Active Lives website has been shown to help older people to increase physical activity. This study aimed to roll out Active lives to make it available to older people living in the community. The steps involved in the project included: Identify, approach and influence organisations interested in helping older people to be active in order to find places that could help us roll out Active Lives. Monitor how many people used active lives and how many were actively engaged enough to have what we think was a sufficient ‘dose’ of the intervention to be likely to change their behaviour. Interview people implementing Active Lives and study what happens in meetings to formulate a list of barriers and facilitators to the roll out of active lives. Results We worked with a wide range of organisations including AHSNs/HINs, charities which serve older people, physical activity organisations, NHS trusts and NHS England. The website reached 5002 people. 1306 people were engaged enough to view the core content necessary to lead to behaviour change. NHS England were instrumental in us achieving traction in several NHS trusts. Six NHS trusts and one charity agreed to help us roll out active lives. One physical activity partnership was helpful in facilitating relationships with their local NHS trust. Their support helped influence local trusts, build clinician confidence in Active Lives and help put in place strategies to maximise uptake of older people to Active Lives. Other physical activity partnerships and the physical activity sector more broadly chose not to support the implementation of Active Lives. Barriers here were especially focused on the belief that older people are not digitally engaged, that older people will only benefit from in person groups, and some viewed this as a threat to the groups that they were locally facilitating or supporting themselves. We appeared in competition with these organisations and it prevented uptake of several NHS trusts that appeared interested at our initial meetings with us (i.e. the physical activity partnerships became a barrier to NHS uptake as they had influence in these NHS trusts). Facilitators to uptake included confidence in the team, believing in an evidence-based approach, the team being able to allay concerns around digital accessibility, providing organisations with figures on how many people used the website and providing support with how to maximise uptake to active lives. Endorsement by NHSE was also very useful in persuading some NHS trusts to take on Active Lives. Things that slowed roll out down: Complexity in the NHS trusts’ chain of command slowed the sign up to Active Lives, this was problematic in a 12-month project. NHS trusts also required complex and nuanced data security and other digital health forms to be completed and trusts were overly cautious with regards to the perceived digital security risks of the intervention. This caused long delays and used valuable resources. What have we done? We implemented Active Lives in practice across 6 NHS trusts, having direct impact on older people. 5002 used it, of which 1306 were actively engaged to a level which we believe is a sufficient ‘dose’. We’ve written a paper on the barriers/facilitators https://aging.jmir.org/2025/1/e64953 What have we learned? Despite the short nature of this project, it achieved good impact and was able to support a large amount of people in a short amount of time Support from all partners is needed to overcome barriers to implementation. Further roll out would require continued engagement work to allay concerns among the NHS and partner organisations

6bbcedc2-84c3-4fab-84e5-93672150e077 ADOPTED: Social Prescribers In Deprescribing Role (SPiDeR) Team: Dr Kinda Ibrahim, Pharmacist and Lecturer, Faculty of Medicine, Deputy Lead Ageing and Dementia, ARC Wessex Dr Sara McKelvie, NIHR Clinical Lecturer in General Practice Dr Eloise Radcliff, Research Fellow, Faculty of Medicine Emma Ward, 3rd Year Medical Student Lizzie Wimbourne, PhD candidate and Policy Intern (supported by Gareth Giles) Dr Laura Bryant, GP and School of Primary Care Apprentice Pam Douglas and Neil Wilson, Public Contributors and Co-applicants Senior Support Prof Hazel Everitt, Dr Stephanie Tierney, Prof Peter Griffiths and Prof Joanne Reeve Starts: April 2023 Ends: September 30, 2024 In the UK, a third of all people aged 65 years and above regularly take five or more medications, known as polypharmacy. Polypharmacy can increase the risks of side effects and hospital admissions. One of national priorities for NHS England set by the Chief Pharmacist, is to reduce prescribing unnecessary medication (overprescribing) by 10% for patients being treated by their GPs. One important way to identify and stop harmful medication is called a Structured Medication Review (SMR) but only half of older patients attended their GP practice for this in 2018-19. Instead of medicines, some people might benefit from other activities such as changes in diet, ways to reduce stress, increasing exercise or participating in group activities. Social prescribers are starting to work within GP teams to direct people to some of these activities. The Chief Pharmacists report on overprescribing suggested that NHS England should expand the use of SMRs in GP practices to benefit patients most at risk of overprescribing. They also recommended the involvement of trained social prescribing link workers as part of GP teams to support patients during and after a SMR. We currently don’t know how social prescribers can be integrated in the SMR process or whether this will have an impact on overprescribing for older people. The aim of this study is to explore the role of social prescribers in the SMR process and identify any training needs or resources required to enable their active involvement in the process. We will hold focus groups with healthcare professionals (GPs, pharmacists and social prescribing link workers) and interview older people who have experience of taking several medicines and/or their caregivers to: 1- Understand whether there is a role for social prescribers in SMR in Primary Care teams 2- Identify training needs for social prescribers to be actively involved in Primary Care teams who are doing SMR reviews 3- Identify factors that might prevent or improve social prescribers’ involvement in SMR 4- Consider what older people and healthcare professionals felt about alternatives to medications and map relevant activities and guidance that could be used as a substitute to medications such as dietary advice, exercise groups or cognitive behaviour therapy 5- Develop a model to describe how social prescribers can be best involved in SMR Understanding the role of social prescribing link workers in the SMR process might increase the use of non-medical solutions for health-related problems and reduce overprescribing. This study could help develop the role of social prescribers and understanding how they could work in primary care to support SMR. We hope this research will help us design and test different models of how social prescribers can work within GP teams to support deprescribing. This project is linked to STOP-DEM and MODIFY SPiDeR project for ARC Wessex 18.9.23 .pptx Download PPTX • 6.89MB

a2f4485f-e939-4775-b10a-095900320a55 FinCH Implementation study: Falls prevention in care homes led by NIHR ARC East Midlands working with NIHR ARC North East North Cumbria, NIHR ARC West Midlands and NIHR ARC South London. Project: Falls in Care Homes (FinCH Imp2 study) Principle Investigator: Professor Pip Logan Team members: Dr Jane Horne , Dr Fran Allen, Maureen Godfrey , Professor Adam Gordon , Professor John Gladman , Dr Katie Robinson , Dr Paul Leighton , Dr Janet Darby , Michael Fletcher, Professor Gillian Manthorpe , Professor Barbara Hanratty , Professor Dan Lasserson , Professor Elizabeth Orton . Partners: Nottingham University Hospitals (NHS) Trust; Leicestershire County Council (Local Government); University of Newcastle, Kings College London; NHS Bromley CCG; Northumbria-Healthcare NHS Trust. Research sites: East Midlands , North East (North Cumbria), West Midlands and South London. Starts: 1/10/2021 Ends: 30/9/2023 Lay Summary People who live in care homes are at great risk of falling. Falls are common, harmful, costly, and difficult to prevent. The Guide to Action for Falls Prevention Care Homes (GtACH) programme trains and supports care home staff to identify the reasons why residents fall and then guides them to complete actions to reduce falls. In a large multicentre randomised controlled trial called the FinCH trial (1), the GtACH programme was cost-effective and reduced falls by 43%. We now need to research how to deliver the GtACH programme in ‘real life’ outside a research trial. We will work with three regions – East Midlands, South London and the North-East - to develop and research ideas about taking up the GtACH training programme which can be used nationwide. Using an approach to talking to people in care homes called Normalisation Process Theory (NPT) we will consider the work that people do in managing falls to assess whether GtACH becomes routine practice. NPT will help us to think about those things which help and those which hinder the adoption of GtACH. We have three work packages: WP1. Quality Improvement Collaboratives (QIC) will bring care home and healthcare staff together to develop and research ways to implement the GtACH. WP2. The QIC site teams will implement GtACH in 25 care homes per region (60 in total). Data from all homes and residents (about 2000 residents) will tell us the extent to which GtACH has been taken up in the homes. WP3. We will develop ‘toolkits’ of materials for care homes; containing the GtACH, a ‘return on investment’ calculator, the implementation package, and a ‘how to’ guide for establishing Communities of Practice to deliver and sustain the GtACH across regions. This study has been developed in collaboration with care home managers, care home staff, NHS clinicians and our active Patient, Public, Involvement (PPI) group who are co applicants. Going forward we have identified new PPI partners from Ashington and Bromley. We will talk by videoconferencing if needed. The study will be completed by July 2023 and we will disseminate our findings on the ARC-EM website, producing a short trailer video for YouTube, and through articles in journals and MyHomeLife Magazine. We will link our website on the national forums of the National Care Forum, Skills for Care, and Care England, Age UK, and the Alzheimer’s Society, and hold webinars for funders and managers Method Using monthly stakeholder meetings, consensus groups, interviews and literature searching we re-designed the GtACH into a suite of resources that care homes were happy to use and renamed it, on their request, to the Action Falls programme. Using an implementation theory called Normalisation Programme Theory we designed a research study to test how the Action Falls programme worked in 60 real world care homes. Care homes are being recruited across four ARC locations. All care home staff included in the 60 homes are being invited to complete the Action Falls training and complete a questionnaire (called the NoMAD) to assess how ready they are to use the programme. Interviews with care home staff and the trainers are being completed to get a first-hand view of how well the Action Falls is getting embedded into routine care. Care home staff are coming together in supportive collaborations, called Action falls Collaborations (AFC) to share knowledge, with researchers collecting data at these events. Results Ethical approval for the study has been granted by HRA East Midlands and Derby Research Ethics Committee Ref: 22\EM\0035. The study is adopted by the NIHR portfolio and the NIHR Clinical Research Network are helping to deliver the study in all locations, which are listed below in brackets. 36 care homes (60%) have been recruited, 13 in ARC North East (NE), 9 ARC London South (SE), 14 ARC East Midlands (EM). ARC West Midlands (WM) will start recruitment soon. In the ARC EM location we have four separate NHS Trusts/ Local authority areas involved. 7 NHS/ Local Authority/HEI Falls Leads have been trained in ARC’s NE, LS and EM and have begun training of the care home staff across the locations. One AFC has taken place in NE with the East Midlands AFC and South London due to take place later this month. The NoMAD questionnaires have been delivered to care homes. No interviews have yet been completed as these are due to start in November. In addition to the four locations the team have interacted with 83 individual care homes and 47 stakeholder groups sending them the Action Falls resources and talking over how they might be used, but no training has been offered. The images below show the spread of these enquiries Conclusion The study is progressing well, and care homes are very keen to take part and recruitment for the study is currently at 60%. The sites are set up and staff are in posts. We are approximately three months behind target on the activities due to care homes being reluctant to engage early in 2022 due to COVID. We consider that we may need a no cost 6-month extension to complete all the activities and to also get the Action Falls programme ready for wider spread. All our study meetings are well attended, and we have good participation from our PPI members with information being communicated from out Study Steering Group to the Stakeholders and vice versa sharing knowledge and experience. The study has gathered a lot of interest from outside of the study areas, from care homes and a range of other stakeholders. The research team have been sending out study materials and meeting with these groups over MS Teams meetings sharing resources and information about the study.A PhD student will be working with the care homes outside of our study locations from October 2022.

eb290c7e-cd77-4244-9d45-322994af9f69 COMPLETED ADOPTED PROJECT: Comparing pharmacological and non-pharmacological interventions for adults with Attention-Deficit/Hyperactivity Disorder (ADHD): systematic review and network meta-analysis Chief Investigator: Professor Samuele Cortese – University of Southampton Project Team Members: Professor Andrea Cipriani – University of Oxford, Associate Professor Corentin Gosling – University of Paris Nanterre, France, Dr Luis Faraht – University of São Paulo, Brazil / Yale University Child Study Center, USA, Dr Cinzia Del Giovane – University of Modena and Reggio, Italy Start Date: 1st March 2022 End Date: 28th February 2024 Background: It is currently unclear how different treatment options for preschool children with ADHD compare with each other in terms of efficacy and safety. We will use data from available randomised controlled trials (RCTs) and apply an advanced and innovative statistical approach (network meta-analysis) to answer this question. The project started in 2022. Expected outcomes: We will understand how pharmacological and non-pharmacological interventions (including behaviour intervention, family-based systematic approaches and dietetic interventions) compare with each other in terms of their beneficial effects on ADHD symptoms and safety. What did we find out? We found that Stimulant medications and atomoxetine are the only treatments that clearly help reduce the main symptoms of ADHD in the short term, based on both what patients say and what doctors observe. However, people were less likely to stick with atomoxetine than with a placebo (a dummy pill). These medications didn’t show clear benefits for other important things like improving quality of life, and we don’t know much about how well they work in the long run. Non-medication treatments had mixed results depending on who was doing the rating. This study gives the most complete picture so far of how different treatments for adult ADHD compare to each other. It can help guide treatment choices, but those choices should always be based on a careful look at both the benefits and risks — and on what matters most to the individual. • The study is already informing clinical guidelines, e.g., the ongoing guidelines from APOSARD (USA). What will we do Next? Going forwards we will: • Contact guideline bodies in the UK and abroad to bring the network meta-analysis to their attention. • Include the results of the network meta-analysis in a large-scale umbrella review on pharmacological and non- pharmacological treatments for ADHD across the lifespan, and to create a platform to disseminate the findings in a user-friendly way to inform service users, clinicians, and guideline developers. Publications Comparative efficacy and acceptability of pharmacological, psychological, and neurostimulatory interventions for ADHD in adults: a systematic review and component network meta-analysis - ScienceDirect

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

35fc5ade-22b2-4685-9329-21c42b28a888 COMPLETED: Testing the living with chronic illness scale Validation of the living with chronic illness scale in an English-speaking population with Long-term conditions Principal Investigator: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton) Team members: Dr Kelly Hislop-Lennie (Principal Investigator). Senior Lecturer in Adult Nursing. University of Bournemouth. Dr Leire Ambrosio. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Ms Hannah Barker. PhD student at the School of Geography, University of Southampton. Dr David Culliford. Principal Research Fellow and Senior Medical Statistician. School of Health Sciences, University of Southampton. Dr Emily Arden-Close. Principal Academic in the Department of Psychology, Bournemouth University. Dr Jo Hope. Lecturer. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Dr James Bennet. Primary Care Research Locality Lead, Clinical Research Network Wessex. Dr Simon Fraser. Associate Professor of Public Health. University of Southampton Dr Corine Driessens. Senior Research Fellow in Statistics. NIHR Applied Research Collaboration Wessex, University of Southampton. Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton. Start: 1 October 2019 Ends: 30 September 2021 Project Partners: Clinical Research Network (CRN) Wessex, Primary Care Dorset, Bournemouth University, University Hospital Southampton NHS Foundation Trust NHS: Alresford Surgery. Alresford, Angel Hill Surgery. Bury St. Edmunds, Banbury Cross Health Centre. Oxfordshire, Buchanan Road Surgery. Sheffield, Buttercross Health Centre. Somerton, Glastonbury Health Centre. Glastonbury, Heeley Green Surgery. Sheffield, Ixworth Surgery. Ixworth, Newquay Health Centre. Newquay, Oaks Healthcare. Waterlooville, Park Road Surgery. Teddington, Rosedale Surgery. Lowestoft, Shreeji Medical Centre. Slough, Swanage Health Centre. Swanage, The Park Medical Practice. Shepton Mallet, Trafalgar Medical Group Practice. Portsmouth, Wareham Surgery. Wareham, White Horse Medical Practice. Faringdon. Charity Partners: Parkinson’s UK , Diabetes UK and Asthma UK What did we find out? The scale successfully measures individuals’ experiences of living with one or more long-term conditions We found that the scale was acceptable to 577 people from the United Kingdom living with different long-term conditions. The results recommend shortening the original version of the scale for better use in clinical practice. What difference can this new knowledge make? The scale does not focus on the disease but on how the person lives with the disease; therefore, identifying physical, emotional, spiritual, and social complex needs and what is meaningful and relevant to people. Utilising the scale as an assessment and diagnostic tool in primary care could result in better health care. For example, it could support the development of more comprehensive and individualised care plans, a more effective and directed referral to specialists and community support groups, and regular monitoring. Its use could bridge health and social care services, developing and evaluating care pathways based on the commonalities across conditions (not medical diagnosis), and improving patient experience. Why is this important? This work has led to a new understanding of key elements that health and social care interventions must address to improve the lives of people living with long-term conditions. It highlights the need to focus on capturing the things that matter to people living with one or more long-term conditions in the UK. What next? The next step is to carry out a feasibility implementation study of the scale in clinical practice, particularly for people living with type 2 diabetes. The use of this scale in clinical practice has the potential to improve the daily lives of people with multiple conditions, improving their quality of life and well-being. It can also help improve referral processes and coordinate care. Outputs from research: Ambrosio, L., Hislop-Lennie, K., Serrano-Fuentes, N., Driessens, C., & Portillo, M. C. (2023). First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease. Health and quality of life outcomes, 21(1), 69. https://doi.org/10.1186/s12955-023-02154-6 Ambrosio, L., Hislop-Lennie, K., Barker, H., Culliford, D., & Portillo, M. C. (2021). Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing open, 8(4), 1909–1919. https://doi.org/10.1002/nop2.859 Ambrosio L, Navarta-Sánchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson's Disease: Spanish validation study. Health Soc Care Community. 2021 Jul;29(4):1030-1040. https://doi.org/10.1111/hsc.13137 Ambrosio L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC. Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK. BMJ Open. 2024 Jan 10;14(1):e077978. https://doi.org/10.1136/bmjopen-2023-077978 Background and origina lay summary Long term conditions (LTCs) are a worldwide challenge because of their complications, increasing numbers, costs and impact on people’s lives. In order to develop interventions that improve the adaptation to illness and quality of life, we need appropriate, reliable and valid tools, which reflect cultural and language diversities and individual needs. This would benefit both patients and health/social care professionals in the management of LTC, by allowing the patients a way to express their needs and therefore, allow the health/social care professional to direct the patient to specific, relevant resources. The present study aims to produce an English version of the Living with Chronic Illness Scale and establish if it can be useful and applicable to English speaking people with LTCs in the UK. The Living with Chronic Illness Scale is the only available tool, which comprehensively evaluates the experience of living with a long-term condition, focusing on the person and not on the disease. This scale was created after previous research, and successfully used with people with Parkinson’s Disease from Spain and South America, in Spanish. In this study we will first translate the Spanish version of the scale into English, making any necessary cultural changes. After this, we will test the understanding of the approved English version with 15 people with LTCs. Then, we will use the final English version of the scale with at least 1,650 people with different LTCs in community settings from Wessex. Apart from the Living with Chronic Illness Scale, we will ask participants about perceived social support, life satisfaction, quality of life, and the perceived severity of their LTC(s), using tools for English speakers. Finally, 2 discussion groups will take place with people with LTC, 2 with family-carers and 2 with health professionals to explore and compare their views about the usefulness of this scale in the daily management of LTC. People with long-term conditions and associations have contributed to the choice of topic, research and dissemination plan.

Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton < Back Don't do it! Sandra Bartolomeu Pires Sandra Bartolomeu Pires is a Research Sister in Neurodegenerative diseases at University Hospital Southampton and PhD Candidate at the University of Southampton From 2018 to 2020 I cowboyed through fellowships and awards, trying to keep a percentage of my time academically focused, in pursuit of the Holy Grail – PhD funding. These varied from 9% to 50% with interim periods of zero (keeping the work going, though). “I just need some funding, my foot in, then I will make it work”. In September 2020, alleluia, PhD scholarship secured! I made a happy dance while holding my 3-year-old daughter and she laughed loudly without understanding why mummy was making such a fuss over a phone call (now that I think about it, she was probably just mocking my lack of dance skills…). I couldn’t believe it. Starting September I would be a PhD student at the University of Southampton! “So how does that work Sandra?”. Well, I get 50% of my time funded to do the PhD. I have funding for four years. “So you need to do a part-time PhD in four years, with a toddler, no family support... (*crickets chirping*) If someone can do it, that person is you!” “Do you have any advice before I start? Something you wished you knew from the beginning?” “Don’t do it”. I have heard this multiple times. Don’t do it; Why would you do it?; Have all your children first, let them go through school, and then do it. Oh please, what do you people know about this? Well, people that are now postdocs and know the pits of despair very well. I really appreciate their advice. They took the time to meet me, share their experience with me, and advise me when I asked for it. But then Seinfeld’s voice in my head “I am special, my mother was right” (yes, I say this joke too many times). “So you need to do a part-time PhD in four years, with a toddler, no family support... If someone can do it that person is you!”“Do you have any advice before I start? Something you wished you knew from the beginning?”“Don’t do it” Our lovely Jamie Stevenson, from the ARC Wessex communications team, challenged us to write how we (PhD scholars) feel in the beginning, and then see how the PhD relationship evolves through the years. The most prevalent thought is “I am not good enough.” – There are plenty of resources and podcasts on imposter syndrome, it’s a big thing, go look it up. My advice on this is something Hugh Kearns said: focus on facts, not feelings. One really needs to be able to balance those internal voices to juggle the daily pressures and workload. This year was more challenging than I could have predicted, worse than the people that had advised me imagined. And I still had it so much easier than many people. In the first COVID wave I paused my SHAPE award, which was so hard to get, to go back full-time clinically. How could I focus knowing all that was happening? So that meant preparing the ARC PhD funding application in my own time, while working full-time in COVID research. In the second wave I thought “Let’s make a tradition out of this!”, deciding to apply for a NIHR Clinical Doctoral Research Fellowship. A lot of my funded PhD time went into preparing this Everest application (while clinically I was once again moved to COVID research but this time inpatients). March was horrible. Deaths from young patients, deaths from colleagues, working clinically in an area out of my comfort zone, and this huge application, the cherry on top of the cake. I was broken and needed help. My supervisors were incredibly supportive, and the Staff helpline was my lifeline. Then, stomach pain. Daily, unable to eat properly without feeling uncomfortable (I LOVE FOOD!!). “That is stress!”. My reply was “I always had a stressful life and never had stomach pain”. Thinking back, it probably is “just” stress. I mean, I am not 20 anymore… After telling my husband “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” I actually managed to submit the application, at 2am. At 9am, all the kind souls that were my signatories and participatories, had signed (Thank you so much!) and off I went to Bournemouth beach with my mother and sister, who had travelled in the middle of a pandemic to see us, and whom I had barely laid eyes on. Freedom Day, 11th June (Sorry, Boris!). I could really have used some holidays then - or an induced coma for a week - but no can do. Diving back into my systematic literature review and thanking my past self for keeping good records. I am now past my first viva/First PhD review progression, straight out of the oven (23rd July 2021) and received overwhelming positive feedback “You seem to think you are delayed Sandra, but you are excelling at the PhD” (I hope the assessor and the supervisors didn’t notice my watery eyes). I write this as I am flying to Portugal to see my lovely family. My daughter and husband have been there for a week. So on the day of my viva I was actually alone all day. Not to worry though, plenty of wine in Portugal (Omeprazole and Rennie in the bag) and time to celebrate with those who support me most on this crazy journey. How was this first academic year? It was absolutely amazing! So (SO) hard, but thrilling, challenging, just the way I like it (I am sure it is some disease and I am just going undiagnosed all these years). The taste of victory is addictive: pressing that “Submit” button, reading my assessor’s report on PGR Tracker, having my long surname in papers (soon to come), the validation from my patient population, my supervisors proud of me, and the hope of making change happen for the best care of patients and carers. I am so excited for the next steps. Knowing that I pushed my boundaries, I am doing what I love, working towards a career that I dream of, surrounded by an incredible support network. For now, out of office “ON” on Hospital and Uni accounts. Breaks are important and I have earned my two weeks off. Let’s see what year 2 brings 😉 “I have sent you an email with my login details, if I end up in the resus room (wouldn’t be the first time), please submit the application. Otherwise, I will come back to haunt you!” Previous Next

93e2e1bd-cd98-479a-93a0-a105e734b0c3 ADOPTED: Exploratory research to examine the health impact of scams and fraud and the current knowledge and systems in the police and partner agencies for targeting and delivering victim support services Lead research ers: Ms Ruth Halkon and Dr Michael Skidmore, The Police Foundation; Professor Mark Button, Director of the Centre for Cybercrime and Economic Crime, University of Portsmouth; Dr Amy Meenaghan, School of Criminology and Criminal Justice, University of Portsmouth. Aims We aim to help the police find those who are most likely to suffer the worst damage to their mental and physical health from falling victim to fraud and make sure they receive the support they need to prevent that damage happening. Background Fraud is the most common and fastest growing crime in England and Wales. Many people do not report fraud and those who do often don’t receive help to reduce the crime's impact on their wellbeing. People affected by fraud can suffer serious physical and mental health problems which can lead to poor physical health, anxiety, depression and suicide. Many factors can shape how victims are affected: stress caused by losing what to them are big sums of money feeling betrayed by someone they thought was their friend or partner blaming themselves feeling friends, family and service providers do not understand them struggling to recover due to existing social or health needs. The police know less about the needs of fraud victims than victims of other crimes like domestic abuse. They are under pressure to improve the service they offer but there are many gaps: Fraud is common crime and can affect victims in many ways, which hinders finding victims who need the most support Those police think are most likely to be harmed, known as ‘vulnerable’, may not suffer the worst effects It is not clear what being 'vulnerable' in a crime context actually means Current systems to address 'vulnerability' mainly focus on cutting crime rather than victim health Research by Which? suggests the impact of fraud on victims' wellbeing amounts to £9.3bn, but we need more data Design and methods Our research will focus on two police forces who work jointly to provide support to victims which is widely seen as the best in the country. The project will focus on their systems, data and services to measure their success and produce a case study for understanding and addressing fraud's health impacts. This will be done via: Reading research papers to find out more about fraud victim impact, vulnerability and victim needs Looking at police and health and welfare data to learn about health impacts of different fraud types Talking to those working for the police, social services, victim support services and key health services Interviews with national subject matter experts Interviews with fraud victims who have been given support after fraud impacted their health to learn how this helped them Patient and public involvement Our overall aim is to involve fraud victims in finding a support framework that works for them Dissemination The report will be launched at an event and published on the Police Foundation website. It will be promoted on our blog, newsletter and social media channels. This fact finding project is a first step to creating a new framework that will be used to find those who need the most help to stop their mental and physical health being badly hit and make sure they are given it. The future project would involve: Organising roundtable events with people Bringing police, health and welfare services together to trial the framework Sharing findings and learning points across the country

f6a3bc9c-cb06-4577-8723-be7beaceddc2 COMPLETED: Development, evaluation and provision of an intervention for primary and community NHS staff to help carers and homecare workers supporting people living at home with dementia with their continence. Principal Investigator: Dr Catherine Murphy, Senior Research Fellow, School of Health Sciences, University of Southampton. c.murphy@soton.ac.uk Team: Jane Ward: former carer, Alzheimer’s Society Research Network Member, co-founder of Dementia Friendly Hampshire, Patient Research Ambassador: Prof Miriam Santer: Professor of Primary Care Research, Faculty of Medicine, University of Southampton: Prof Jill Manthorpe: Professor of Social Work, Director of NIHR Policy Research Unit in Health & Social Care Workforce, King’s College London – Associate Director of NIHR School for Social Care Research: Prof Mandy Fader: Professor of Continence Technology, School of Health Sciences, University of Southampton: Dr Leanne Morrison: Lecturer in Health Psychology, School of Psychology & Primary Care Research Centre, University of Southampton. Partners: Health Innovation Wessex, Alzheimer’s Society, Homecare Association, Carers UK, Queen’s Nursing Institute, Dementia UK, King's College London. Start: 1/06/2022 End: 1/4/2024 Plain English Summary of Findings We found that Healthcare professionals wanted an easy and quick to use intervention to sign-post carers to continence care guidance. Homecare workers would welcome resources aimed at having difficult continence conversations The findings led us to develop the first evidence-based website to support healthcare professionals to provide continence advice to the carers of people living with dementia. The intervention also provides carers with detailed, practical self-management guidance. The website is www.demcon.org.uk A summary of the work can be found in this article: C Murphy, B Bradbury, M Fader, L Morrison, M Santer, J Ward, H Chester. Supporting continence care for people living at home with dementia. 22 APRIL, 2024. Nursing Times What Next? The project has provided foundational findings for the next phase of work which includes developing a new intervention to support homecare workers to initiate continence conversations with people living at home with dementia. This work (DemCon2) is being funded by NIHR Three School’s Dementia Research Programme and will start Autumn 2024. Initial Summary (2022) Most of the 850,000 people living with dementia in the UK live in their own homes with support from family or friend carers. Dementia puts people at much greater risk of developing continence problems (with urine/wee or faeces/poo) than people without dementia of the same age. Continence and toilet-use difficulties cause many problems for both people living with dementia and carers, for example, sore skin, infections, embarrassment, anxiety, fear of going out, relationship breakdown, and expenses such as cleaning carpets or laundry. Dementia can mean that using pads or reminders do not work well for people as time goes by. Many carers find dealing with incontinence hugely distressing. They describe feeling poorly prepared and alone. Many find it difficult to talk about and want better support from health and care professionals. Recently we asked people living with dementia, carers and nurses to tell us what information and support they would find useful. From that, we developed a detailed, practical handbook specifically for carers, covering: · understanding why someone with dementia might become incontinent · helping people keep ‘dry’ · managing incontinence · talking about incontinence · continuing with daily activities and socialising. The handbook contains many ‘real-world’ quotes from carers and will be made freely available on www.continenceproductadvisor.org (an NHS endorsed website). This is a good start but requires carers to find and use the handbook by themselves. Most carers want proactive support from the professionals they see (either healthcare or homecare workers), but healthcare professionals often feel ill-equipped to help carers or advise homecare workers. Therefore, in this study, we will develop a new resource that will build on the handbook and equip healthcare professionals to: · start conversations with carers and homecare workers · discuss continence problems and help people choose goals · deliver practical advice to carers and homecare workers. To do this, first we will review research on similar resources and speak to up to 45 primary and community healthcare professionals and homecare workers to fully understand their needs and how a new resource could be used and useful. We know that many people living with dementia and carers have regular contact with homecare workers who often help with washing and going to the toilet. Then, we will work with carers, people living with dementia, healthcare professionals, homecare workers, care commissioners or funders, voluntary groups and professional bodies to develop the resource. We will ask up to 60 people living with dementia, carers, homecare workers and healthcare professionals to use the resource and tell us what they think. We will then make changes to improve the resource. We want this resource to be used by as many primary and community healthcare professionals as possible so that they can support homecare workers and family carers. So, throughout this project, we will ask people about the best way to make it both useful and accessible. It will be freely available via www.continenceproductadvisor.org and we expect adopted and recommended by a range of organisations such as the Alzheimer’s Society, Skills for Care, Homecare Association and professional groups.