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COMPLETED: Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE) This project is part of a national consortium Contact: Professor Nisreen Alwan MBE , University of Southampton Currently in England, there are 90 specialist Post Covid services in which assessment and treatment of Long Covid, and other complications of COVID-19, are informed by NICE guidelines and growing expertise in the field. However, there is evidence that access to such clinics and related care pathways, the nature of those pathways, and patient experience, varies. Research is required to inform diagnosis, care, public health strategies, policy planning, resource allocation and budgeting. It is likewise essential to define the usual care pathway in Post Covid services, and to understand patient presentation, and the effectiveness and cost of care. The STIMULATE-ICP consortium includes: University College London Hospitals NHS Trust, University College London, University of Central Lancashire, LongCovidSOS, UK Doctors #Longcovid , Royal College of General Practitioners, University of Liverpool, Liverpool University Hospitals Foundation Trust, Perspectum, Living With, University of Hull, Hull University Teaching Hospitals Trust, University of York, University of Leicester, University of Exeter, University of Southampton, University of Sussex, Alliance Medical, GE Healthcare, Olink, Francis Crick Institute, NIHR Applied Research Collaboration South West Peninsula, NIHR Applied Research Collaboration East Midlands, NIHR Applied Research Collaboration North Thames, NIHR Applied Research Collaboration Yorkshire and Humber, NIHR Applied Research Collaboration North West Coast, British Heart Foundation Data Science Centre, BHF Data Science Centre, Health Data Research UK, Office of National Statistics, Royal Devon and Exeter NHS Trust, as well as NIHR Clinical Research Network support. Plain English Summary of findings: 23 interviews were completed with people with probable Long Covid We found… There was a lack of awareness of Long Covid, its symptoms and the support available for people with Long Covid An assumed lack of awareness of Long Covid within healthcare People with Long Covid symptoms experienced doubt and uncertainty about the cause of their symptoms Experiences of stigma and discrimination were commonly experienced by people with probable Long Covid. This included experiences of age and gender discrimination, experiences of being dismissed, unsympathetic attitudes and social exclusion. People with probable Long Covid reported feeling embarrassment, feeling tainted and/or different to others because of their Long Covid symptoms. In addition, they expected disbelief and/or judgement from others because of Long Covid People with Long Covid were sometimes reluctant to seek care due to worries surrounding possible investigations and medications, or worries about symptoms being wholly attributed to mental health conditions. There were also concerns about burdening the NHS. The nature of Long Covid symptoms made accessing care difficult. Long Covid symptoms can often come and go or fluctuate, and sometimes one symptom may be more prominent than others. This can mean some symptoms can be overlooked by patients and healthcare professionals. Experiences of people with Long Covid are also constitute epistemic injustice, or inequality surrounding creating, interpreting and conveying knowledge. This is due to the lack of awareness and knowledge of Long Covid both in the community and within healthcare. What we did Research findings from this study and the NIHR funded HICOVE study have been translated into an easily-usable webtool. This tool aims to encourage people with probable Long Covid who have not yet sought help and support from the NHS or other services to do so. It covers topics of self-doubt, stigma and effects on mental health as well as offering resources, tips, and advice on next steps. This tool is primarily aimed at people who may have Long Covid but are not currently accessing care but may also be helpful to those who are. It is also aimed at healthcare professionals, social prescribers, as well as community organisations to raise awareness about the difficulties and stigma people, particularly those from disadvantaged backgrounds, may face when considering reaching out for a consultation or community support. The webtool is available here: Supporting Long Covid Care ( long-covid-care.org.uk ) Where next? We are working on disseminating the Supporting Long Covid Care webtool as widely as possible. We will create an offline version of the tool so this is accessible to people who are not ‘online’. We will also include translations of this into community languages. This will be available to download from the website and from community organisations. We are also looking at ways to evaluate the webtool. See our news article

Reframing responsibility through public empowerment: proposing the ‘FoodEnviroScan’ app to unmask unfair environmental cues influencing poor diets Team Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences, University of Southampton. Dr Lyn Ellett. Associate Professor of Clinical Psychology. School of Psychology. University of Southampton. Prof Mari Carmen Portillo. Professor of Long-Term Conditions. School of Health Sciences University of Southampton. Prof Janis Baird. Professor of Public Health and Epidemiology, MRC Lifecourse Epidemiology Centre, University of Southampton. Prof Christina Vogel. Deputy Director, Centre for Food Policy City, University of London. Partners Peter Rhodes (potential support). Senior Programme Manager, Industry and Innovations (AHSN). Jessica Berry (potential support). Personalised Care Programme (ICS). Dr Alexandra Mant (potential support). Institute for Life Sciences Collaboration Manager at the University of Southampton. Dr Lindsay Welch. Clinical associate professor at the University of Bournemouth. Previous Program Lead Health Inequalities (Health Innovation Wessex) Starts: 27th February 2023 Ends: 30th September 2024 Summary Our cities have changed a lot since the 1960s. One of the biggest changes is that there are now a lot more places to buy unhealthy fast food and sugary drinks, like takeaway shops. The food and drink companies have also used clever marketing strategies so we buy more of their products. Some of their strategies are hard to spot, but they have impacted people living in poorer areas the most. For example, these people might see a lot more ads and deals for fast food and junk food around where they live and work. Research shows that the best way to improve our diets is to have stronger rules for how the food industry is allowed to advertise to us. But currently there are not many policies like this. And there is not much public support for stronger rules either. That is because many people still think it's up to them alone to eat healthily. We want to talk to the public to discuss how we can get more public attention on the power big food companies have. We also want to talk about what else we as a society can do to put more pressure on the food industry to change. We are also interested in whether new technologies could help with these goals.

EnTech (Enabling Technology): Investigating the enabling and inhibiting factors to the use of internet-based support tools for caregivers of people with dementia, and how to promote engagement. Chief investigator: Prof Chris Kipps Neurologist, Clinical Director R&D University Hospital Southampton Dr Sarah Fearn Senior Research Fellow NIHR ARC Wessex (Ageing & Dementia) University of Southampton Team: Prof Cathy Murphy, Professorial Fellow Research, School of Health Sciences University of Southampton Prof Eneida Mioshi Professor in Dementia Care Research University of East Anglia NIHR ARC East of England Jane Ward Dementia Friendly Hampshire Amanda Wollam Public contributor with personal and professional (social care) experience of caregiving to people with dementia Start: 1 October 2024 End: 31 March 2026 Partners: Do rset HealthCare University NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, University of East Anglia / NIHR ARC East of England, Dementia Friendly Hampshire, My Dementia Support. Our research This research aims to identify the factors that help or hinder caregivers of people with dementia to use online support tools. It also aims to create strategies to support caregivers to use them. We will use two internet-based resources as examples in our work: the DemCon website, which provides advice on dementia and continence, and FTDToolkit, which will be a psychoeducational intervention to support management of behavioural symptoms in people with frontotemporal dementia (FTD) and FTD with Motor Neurone Disease (FTDMND). Whilst some previous research in this area exists, it has been based mostly on surveys and has not included caregivers who do not go online. We will use interviews and focus groups so that caregivers can discuss all of the factors that affect their use of online support tools. This could include their personal situation and attitude towards online support tools, as well as thoughts about the tool itself. We will ensure that caregivers who are less confident or less able to use online websites are also included. We will also investigate the factors that help or hinder caregivers of people with a specific type of dementia – young onset dementia or frontotemporal lobar degeneration, which includes, but is not limited to, FTD. These sub-types of dementia often affect people at a younger age and can have different symptoms to other, more common types of dementia. This specific group of caregivers has not previously been discussed in existing research on this topic. We will use our findings on the factors that help or hinder caregivers of people with dementia to use online support tools to create strategies to support them. We will do this in workshops with caregivers so that we create them together. Managing continence issues and behavioural changes can be difficult topics for caregivers to discuss. This project will provide insight into how online support tools can help support conversations about challenging topics. Public involvement We are working with caregivers of people with dementia and local dementia charities in this project. On our team, we have two public contributors who both have lived experience of caring for someone with dementia. They will help us to design and carry out the research, to make sure it is relevant to caregivers and benefits them. 60 caregivers will participate in the research in interviews, focus groups or workshops. Outcomes This research will inform the roll-out of DemCon and development of FTDToolKit, to promote their successful adoption by caregivers. Our findings will also be relevant to the development and roll-out of other online support tools for caregivers of people with dementia. We will share our findings with caregivers, academics, support tool developers and others involved in the care of people with dementia. We will produce reports, write scientific articles, present at conferences, and work with national and local dementia organisations to share our findings.

The PD Life Study: Exploring the treatment burden and capacity of people with Parkinson’s and their caregivers Principal Investigator: Professor Helen Roberts Research team: Dr Qian Yue Tan (Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Professor Helen Roberts (Professor of Medicine for Older People, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Kinda Ibrahim (Senior Research Fellow, Academic Geriatric Medicine, Faculty of Medicine, University of Southampton), Dr Simon Fraser (Associate Professor of Public Health. School of Primary Care and Population Sciences, Faculty of Medicine, Southampton General Hospital), Dr Khaled Amar (Consultant Geriatrician and Honorary Senior Lecturer at Bournemouth University, Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust) Start: October 2020 Ends: October 2022 Project Partners: University of Southampton, Bournemouth University, University Hospital Southampton NHS Foundation Trust, Royal Bournemouth and Christchurch Hospitals NHS Foundation . Lay Summary People with Parkinson’s (PwP) have many symptoms including tremor, stiffness, slow movements, constipation, urinary incontinence and mental health issues. They are often older and have other long-term health conditions. PwP need to do many things to look after their health including manage multiple medications, attend healthcare appointments and lifestyle changes such as improving diet and exercise. The effort of looking after their health and its impact on them is termed ‘treatment burden’. Some PwP need help from their family or friends (caregiver) to complete these tasks. Caregivers may also experience treatment burden themselves when caring for someone with Parkinson’s. People’s ability to manage treatment burden is termed ‘capacity’ and is influenced by physical, mental, social and economic factors. People are overburdened when the workload of looking after their health exceeds their capacity. This can lead to poor adherence with treatment, poor quality of life and worse health outcomes. Aim We aim to understand the factors that influence treatment burden and capacity in PwP and their caregivers. Methods Interviews with 15 PwP and 15 caregivers will identify factors that influence treatment burden and capacity. These factors will be explored further in a national survey for PwP and caregivers with support from Parkinson’s UK. We will then form focus groups with PwP, caregivers, voluntary sector representatives, healthcare professionals, policymakers and managers through Parkinson’s Excellence Networks to discuss the findings and prioritise recommendations for change. This study will enable to us develop recommendations of ways to reduce treatment burden and improve future experiences of PwP and their caregivers. This research is also supported by a legacy in memory of Carolyn and Tore-Jan Myhre

COMPLETED: Medicines optimisation Principal Investigator: Dr Simon Fraser Team members: Dr Simon Fraser (Associate Professor of Public Health. School of Primary Care and Population Sciences, Faculty of Medicine, Southampton General Hospital), Professor Chris Edwards (Professor of Rheumatology, Southampton and Associate Director of the NIHR Clinical Research Facility) Dr Chris Holroyd (Consultant Rheumatologist, University Hospital Southampton NHS Foundation Trust), Dr Kinda Ibrahim (Senior Research Fellow, Faculty of Medicine, University Hospital Southampton NHS Foundation Trust), Dr Ravina Barrett (Pharmacist, University of Portsmouth), Dr Clare Howard (Chief Pharmacist, Medicines Optimisation, Wessex AHSN), Dr Mary O’Brien (NHS England, NHS Rightcare), Dr David Culliford (Senior Medical Statistician, Health Sciences, University of Southampton), Professor Paul Roderick (Professor of Public Health, Primary Care and Population Sciences, University of Southampton), Professor James Batchelor (Director Clinical Informatics Research Unit, Faculty of Medicine, University of Southampton), Dr Matthew Stammers (Senior Endoscopy Fellow, University Hospital Southampton and Clinical Informatics Research Fellow at Clinical Informatics Research Unit) Start: 1 October 2019 Ends: 30 September 2024 Project Partners: University Hospital Southampton NHS Foundation Trust, NHS England (NHS Rightcare), University of Portsmouth, University of Southampton, Academic Health Sciences Network (AHSN) Wessex. Lay summary Painful conditions associated with age (such as arthritis) are common in the UK and safe pain relief options for older people are limited. Anti-inflammatory drugs such as ibuprofen are widely used – both bought from the pharmacy and prescribed by doctors, but they have significant risks, such as bleeding from the stomach and kidney damage. Older people and those with certain long-term medical conditions are at higher risk of experiencing bad effects from these drugs. Another issue concerns people who are taking one of a group of medications call ‘disease-modifying anti-rheumatic drugs’ (DMARDs). These drugs are often used for rheumatoid arthritis and work by slowing its progression, reducing the likelihood of severe joint damage and other related health problems. They are also used for inflammatory bowel diseases, such as Crohn’s disease. Methotrexate is one of the most commonly used DMARD in arthritis and azathioprine is one of the most commonly used in inflammatory bowel disease. Anti-TNF drugs are an important group of so called ‘biological agents’ – another type of DMARD. DMARDs are powerful drugs that require regular blood tests to check for adverse effects, such as liver problems, and guidelines advise how often these tests should be done. However, for most people, these blood tests are almost never abnormal, and could potentially be safely done less frequently. In addition, some people with inflammatory arthritis have an excellent response to DMARDs. Stopping DMARDs can lead to flare ups of disease, but the amount of therapy used may be tapered successfully to reduce dose-dependent adverse events and costs. In one part of this research we will use an anonymous database of about half a million people from GP practices in Hampshire to identify how many people are prescribed anti-inflammatory drugs, particularly those who may be at high risk of complications by being older or having other conditions. The aim is to help doctors transfer high risk patients to other pain relief options. In another part, we will use the same dataset and also data from people who have attended University Hospital Southampton NHS Foundation Trust who take methotrexate, azathioprine and anti-TNF drugs. We will look at their blood results to see if some people might not need blood tests so frequently. Patients may be understandably nervous that problems could be missed if the blood check is not done so often, so we plan future research asking patients and doctors whether such reduction in checks would be acceptable. We will also investigate the possibility of successful dose reduction strategies for anti-TNF drugs. Specifically, we will identify which kinds of patients tend to succeed in being able to reduce the dose. This research has potential to reduce the burden on patients and on the NHS by reducing the frequency of blood tests and/or medication burden for some people and avoiding hospital admissions for anti-inflammatory drug complications. Through connections our team has already, the results of this research will be shared with relevant doctors, nurses and patient groups across Wessex so it makes a difference locally. It will also be published in academic journals and presented at conferences. What did we learn? In the two different parts of the project we found that: About half of people taking the ‘disease modifying’ drugs (‘ DMARDs ’) methotrexate for rheumatoid arthritis or azathioprine for inflammatory bowel disease experienced no blood test abnormality over two years despite having to have blood tests every three months. Reducing testing frequency may therefore be safe for younger people and those without other long-term conditions. Among people taking non-steroidal anti-inflammatory drugs (‘ NSAIDs ’ like ibuprofen) the risk of kidney damage was highest among older people with combinations of long-term conditions including chronic kidney disease, diabetes, heart disease and heart failure, and high blood pressure. These people should avoid taking NSAIDs and we provided a way for GPs to identify them in their databases. What difference will this new knowledge make? DMARDs: Further investigation is needed on the safety and acceptability of reduced blood testing frequency testing for some people taking DMARDs but this could potentially result in reduced unnecessary patient anxiety and burden, fewer referrals to hospital and reduce resource use for the NHS. If testing could be reduced this would mean reduced treatment burden for patients and reduced cost and admin work for the NHS NSAIDs: GP practices can be provided with a search tool that helps identify those at highest risk of kidney damage from NSAIDs. Using this information they can review and stop NSAIDs to reduce the risk. If prescribing was stopped for some people at risk, this would reduce risk of acute kidney injury which can have lasting consequences or even be fatal What's next? DMARDs: Our study informed further work on the risk stratification of people taking DMARDs in this paper: https://www.bmj.com/content/381/bmj-2022-074678?ijkey=19f0b9a96fd3e38092eb855e24fd903f7e3fec2f&keytype2=tf_ipsecsha and was cited in this paper about supporting sustainability through reduced testing: https://www.bmj.com/content/382/bmj.p1645 Tom Lewis, consultant pathologist and co-national lead pathology ‘Getting It Right First Time’ programme strongly supported this work NSAIDs: We searched the entire Dorset intelligence and insight Service (DiiS) database (over 800,000 people) using our risk tool to identify the variation in NSAID prescribing by practice and risk of acute kidney injury We ran an NSAID masterclass with people from over 50 GP practices in Dorset to share this information, to teach about NSAID use and to share our method to identify those at risk in practices. Publications: Characterising risk of non-steroidal anti-inflammatory drug-related acute kidney injury: a retrospective cohort study Persistently normal blood tests in patients taking methotrexate for RA or azathioprine for IBD: a retrospective cohort study | British Journal of General Practice ( bjgp.org ) https://www.arc-wx.nihr.ac.uk/post/southampton-led-study-shows-need-for-painkiller-caution-to-prevent-kidney-damage https://www.youtube.com/watch?v=uSriKPqdbvA&t=6s

COMPLETED: Change in treatment burden among people with multimorbidity: Protocol of a follow up survey and development of efficient measurement tools for primary care Principal Investigator: Professor Simon Fraser Start Date: 01 October 2020 End Date: 30 September 2024 Background Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. It is likely treatment burden changes over time as circumstances change for patients and health services. However, there are a lack of population-level studies of treatment burden change and factors associated with this change over time. Furthermore, there are currently no practical screening tools for treatment burden in time-pressured clinical settings or at population level. This is a three-year follow-up of a cross-sectional survey of 723 people with multimorbidity (defined as three or more long-term conditions; LTCs) registered at GP practices in in Dorset, England. The survey will repeat collection of information on treatment burden (using the 10-item Multimorbidity Treatment Burden Questionnaire (MTBQ) and a novel single-item screening tool), sociodemographics, medications, LTCs, health literacy and financial resource, as at baseline. Descriptive statistics will be used to compare change in treatment burden since the baseline survey in 2019 and associations of treatment burden change will be assessed using regression methods. Diagnostic test accuracy metrics will be used to evaluate the single-item treatment burden screening tool using the MTBQ as the gold-standard. Routine primary care data (including demographics, medications, LTCs, and healthcare usage data) will be extracted from medical records for consenting participants. A forward-stepwise, likelihood-ratio logistic regression model building approach will be employed in order to assess the utility of routine data metrics in quantifying treatment burden in comparison to self-reported treatment burden using the MTBQ. What we found Out •Among over 800 people aged 55 or older, living with multiple long-term conditions across Dorset, high treatment burden was common (about a fifth of all survey respondents) •Making lifestyle changes and arranging appointments were particular sources of difficulty. Having limited health literacy and experiencing financial difficulty were strongly associated with greater treatment burden. Having more conditions and more prescribed regular medications were also associated. •A single-item treatment burden measure was only moderately good at discriminating between high and non-high burden. •Among 300 of these people who responded to a follow up survey after an average of two and a half years, about a third experienced an increase in treatment burden. This was linked to having more than five long-term conditions and living more than ten minutes from the GP, particularly for people with limited health literacy. •A slightly revised single-item measure still only performed moderately, so it needs more development before being used in general practice. •Using data from participants’ GP records also only performed moderately at reflecting high treatment burden, so further development is needed to use routine health records to identify those at risk of high treatment burden. What difference will this knowledge make? •Given the high prevalence of high treatment burden in people living with multiple long-term conditions, healthcare professionals can legitimately engage with patients on this issue to recognise and seek to minimise avoidable burden. •Health systems (including Integrated Care Boards/Systems) should include consideration of treatment burden in policies and in service design and commissioning, aiming for ‘minimally disruptive medicine’. •Healthcare professionals can anticipate that treatment burden tends to worsen over time in a significant proportion of people living with multiple long-term conditions. •Further development of the short treatment burden questionnaire is underway in a separate NIHR-SPCR-funded study and could be introduced in primary care if it performs better. •Identifying ‘burden’ in data will be investigated in much more detail in a further NIHR-funded study Why is this important for patients, health and care providers and policy makers ? •Factors such as improving access to primary care, particularly for those living further away from services, may reduce treatment burden. •Different modes of health service delivery to specifically meet the needs of those patients more likely to feel overburdened may be needed •Improving health literacy should be an important goal for the health system •Overburdened patients may be more likely to struggle with adherence to self-management •Being overburdened may result in greater use of unscheduled care. This is a priority for the NHS and the link needs further investigation In related work we published a paper on a systematic review of system factors influencing treatment burden, led by a Southampton MSc Public Health student. This has identified important gaps in the evidence map for treatment burden. Providers and policy makers need to recognise the financial and administrative burden for patients and the lack of evidence on this: doi.org Influence of health-system change on treatment burden: a systematic review Background Treatment burden is a patient-centred concept describing the effort required of people to look after their health and the impact this has on their functioning and wellbeing. High treatment burden is more likely for people with multiple long-term conditions (LTCs). Validated treatment burden measures exist, but have not been widely used in practice or as research outcomes. Aim To establish whether changes in organisation and delivery of health systems and services improve aspects contributing to treatment burden for people with multiple LTCs. Design and setting Systematic review of randomised controlled trials (RCTs) investigating the impact of system-level interventions on at least one outcome relevant to previously defined treatment burden domains among adults with ≥2 LTCs. Method The Embase, Ovid MEDLINE, and Web of Science electronic databases were searched for terms related to multimorbidity, system-level change, and treatment burden published between January 2010 and July 2021. Treatment burden domains were derived from validated measures and qualitative literature. Synthesis without meta-analysis (SWiM) methodology was used to synthesise results and study quality was assessed using the Cochrane risk-of-bias (version 2) tool. Results The searches identified 1881 articles, 18 of which met the review inclusion criteria. Outcomes were grouped into seven domains. There was some evidence for the effect of system-level interventions on some domains, but the studies exhibited substantial heterogeneity, limiting the synthesis of results. Some concern over bias gave low confidence in study results. Conclusion System-level interventions may affect some treatment burden domains. However, adoption of a standardised outcome set, incorporating validated treatment burden measures, and the development of standard definitions for care processes in future research would aid study comparability. What are we going to be doing next? Several related studies are already underway: In the NIHR-funded MELD-B study, more in-depth exploration of the experience of living with multiple long-term conditions is underway. This study is exploring in depth the representation of the work/burden in electronic health records. See short animation here: https://www.youtube.com/watch?v=7mZptrMAapY In the NIHR SPCR-funded SPELL study, a Short Treatment Burden Questionnaire is being developed and tested, building on our findings. https://spell.blogs.bristol.ac.uk/ Work has been instigated with the Dorset Public Health team and ICS to explore the value of adding treatment burden concepts to frailty indicators to identify people who might benefit from a ‘carousel clinic’ which supports people with frailty/prefrailty in various ways. This work is ongoing A proposal has been submitted as an ARC extension of the MELD-B project to explore the feasibility of burden concepts enhancing the work of care coordinators in primary care Publications https://doi.org/10.3399/bjgp.2020.0883 https://doi.org/10.3399/BJGP.2022.0103 Simon Fraser delivered a BJGP podcast on this work which can be found here: https://www.youtube.com/watch?v=MLqrp4HOb7s

FLEXI: Falls management exercise programme led by NIHR ARC East Midlands working with NIHR ARC Greater Manchester and NIHR ARC South West Peninsula The FLEXI Study (FaLls EXercise Implementation) Principle Investigator: Dr Elizabeth Orton Team members: Professor Denise Kendrick , Professor Stephen Timmons , Professor Carol Coupland , Professor Pip Logan , Professor Tahir Masud , Professor Vicki Goodwin , Professor Claire Hulme , Professor Chris Todd , Dr Helen Hawley-Hague , Dr Paul Wilson, Professor Dawn Skelton , Mrs Margaret Beetham Partners: NIHR ARC Greater Manchester , NIHR ARC South West Peninsula ,South West Academic Health Sciences Network, Royal Society for the Prevention of Accidents, Health Innovation Manchester, Later Life Training, Torbay and South Devon NHS Foundation Trust, Leicester-shire and Rutland Sport. Research sites: Devon Integrated Care System (ICS), Manchester combined authority, Leicester, Leicestershire and Rutland ICS, Derby and Derbyshire ICS Starts: 1/10/2021 Ends: 30/9/2023 Lay Summary Falling can cause injury, pain, loss of confidence and independence. This is undesirable for the individual and their families, and places significant demands on health and social care services. Falls are not inevitable. By improving an individual’s strength and balance, alongside skills to help getting up from a fall (should this happen), the likelihood of a fall occurring or having damaging consequences, such as a long lie on the floor, can be minimised. The Falls Management Exercise (FaME) programme is a group-based, face-to-face, six-month exercise programme specifically aimed at improving the strength and balance of people aged 65 and over. Research has shown that FaME results in fewer falls, improved confidence, and reduced fear-of-falling. Despite this, FaME is still not available everywhere across England. More needs to be understood about how best to increase its availability and ensure high quality delivery. To improve our understanding of this, we previously studied FaME’s set-up, delivery and quality in the East Midlands. We learnt a lot about how to get FaME running and showed that the programmes worked outside of a research setting. Using learning from the East Midlands, we developed a guide for implementing FaME called the implementation toolkit . This evidence-based toolkit contains all the information needed to set up and run a FaME programme, from making the initial business case to promoting it to participants. We now want to use this toolkit to see if FaME can be made more available in two new, and very different, regions: Greater Manchester and Devon, and assess whether FaME works in these populations too, particularly if adaptations are made because of Coronavirus. We aim to: 1) Understand how best to increase availability of FaME in two new areas and assess the role that the toolkit plays in this. Using the toolkit we will work with local experts to promote FaME to organisations that decide what health services should be funded locally. 2) Study the delivery of FaME in the new areas and see if programmes work in these populations by measuring improvements in participating individuals. 3) Test ways of maintaining the quality of FaME programmes over time. Working with Later Life Training, a national not-for-profit organisation with expertise in FaME, we will measure the quality of programmes and test what works to make them better. We will use this information to improve the implementation toolkit and develop plans to support national implementation of FaME.

ADOPTED: SPLENDID Social Prescribing for people to Live ENjoyably with Dementia/memory problems In Daily life Research lead: Professor George Christopher Fox, University of East Anglia ARC Wessex team: Dr Euan Sadler, University of Southampton, Dr Katherine Bradbury, University of Southampton. Partner organisations: NHS Norfolk and Waveney CCG, University of Hull, University of Nottingham, University of Exeter, King's College London, University of Newcastle upon Tyne, Meaningful Measures Ltd. Start: 01/05/2022 End: 30/04/2027 What is the problem? Nearly one million people in the UK will be living with the affects of dementia by 2030 including poor well-being and quality of life. Social prescribing is a prescription of activities for a person to use to link with others and undertake something they might enjoy, this could be a walking or singing group, flower arranging class, visit to a museum or putting them in touch with other people to help them feel better. People meet with staff called Link- Workers, who have a conversation with them to help them think about what they enjoy and might help. The Link Worker might then introduce them to a group or activity or support them to find information to make links. Family members can be involved too. Research shows social prescribing has better effects than just taking medicine and is happening more often. This study (called SPLENDID) aims to understand how we ensure social prescribing is useful and helpful to people with dementia. What we will do SPLENDID researchers will talk with people with dementia, family carers and staff working in social prescribing to understand what people want, what works well and what could be improved. We will use this to design, with people with dementia, what looks like the best way for social prescribing with people with dementia. We will create some tools (online and face-to-face) to help workers and people with dementia talk and think together about what might help them. We will test it with a small group of people to see if it helps and look at what training Link- Workers need to offer the best support for people with dementia and their families. We then decide if this should be taken forward and tested in a larger study to see if it improves peoples’ well-being and is value for money. Working with patients and carers Our team met 8 people with dementia and 8 family carers to design this study. We have 2 co-researchers (Mr Rook and Mrs Bingham) who are living with dementia. 150 people with dementia were surveyed to see what social prescribing is currently being offered and found people were doing a range of outdoor and indoor activities, some with family which they enjoyed and found helpful. People with dementia and carers will be on our Committees, and several dementia charities support this work. Dissemination Our website will offer free resources put together with people with dementia and carers. Our findings will be shared locally and nationally using links we have with universities, clinical experts, press, social media, workshops with people who commission and provide. NIHR ARC East of England study site

COMPLETED: StOP UTI project: Strategies in older people's care settings to prevent infection Background Urinary tract infection is more common in older people living in care homes but can be difficult to recognise. This can lead to overuse of antibiotics and may result in antibiotic-resistant infection and hospital admission. We wanted to find out what can work in care homes to prevent and recognise UTI and what support care home staff need to enable safe care for all residents. What we did We reviewed evidence from a range of sources, including research studies and improvement projects. We also asked care home staff, residents, family carers and healthcare professionals about their experiences. We combined these experiences and ideas with the evidence we found from published literature to develop an understanding of what needs to happen in care homes for older people to prevent and recognise UTI. What we found out What difference will this make? UTI can be prevented by embedding prevention activities in care routines: ensuring residents are hydrated ensuring residents with recurrent UTI are managed actively with preventative treatment avoiding the use of urinary catheters wherever possible Unnecessary antibiotic use can be avoided by: involving the whole care team, resident and family in recognising UTI using active monitoring when there is uncertainty about UTI supporting care staff to develop the skills to accurately recognise UTI using tools that support decision-making and communication across the wider care team Safe care for each resident can be achieved when: care staff receive education that is contextualised to their role and helps them to prioritise and deliver person-centred care care home managers are committed to supporting the delivery of best practice commissioners and regulators promote UTI prevention and recognition as a priority area for care homes Why is this important? Our findings suggest ways that care home providers and policy makers can support the prevention and recognition of UTI in the care of older people living in care homes. A system-wide approach is vital to enable care home managers and their staff to prioritise UTI prevention and recognition as part of person-centred care. At policy level, there is a need to integrate UTI prevention with diagnostic and antimicrobial stewardship and to unify the content of education and decision-support resources so that care staff can see the value of their role in prevention as well as supporting diagnosis and treatment of UTI. What next? Our research is the start of a process of understanding what works in care home settings and will identify where further research is needed. A report, summary and articles provide practical examples and recommendations relevant to care home staff, care home managers, researchers, educators, carers and relatives for use to improve the prevention and recognition of UTI in older people’s long-term care and to plan further research to investigate them. We are turning our findings into a range of different resources and digital communications, with input from experts who support the adoption and spread of innovation, for sharing via care home networks and associations. Publication Realist synthesis protocol for understanding which strategies are effective to prevent urinary tract infection in older people in care homes Link to University of Southampton site Research team: • Dr Jacqui Prieto, Joint Chief Investigator, University of Southampton • Professor Heather Loveday, Joint Chief Investigator, University of West London • Professor Jennie Wilson, Co-investigator, University of West London • Mrs Alison Tingle, Co-investigator, University of West London • Mrs Emily Cooper, Co-investigator, UK Health Security Agency • Dr Melanie Handley, Co-investigator, University of Hertfordshire • Professor Jo Rycroft-Malone, Co-investigator, University of Lancaster • Dr Lynne Williams, Co-investigator, Bangor University • Mrs Jennifer Bostock, Co-investigator, Patient and public involvement • Lois Woods, Information Specialist, University of Southampton • Simon Briscoe, Information Specialist, University of Exeter • Jemima Kakpa, Research assistant, University of Southampton • Christine Logan, Administrative assistant, University of West London Project Advisory Group: • Jennifer Bostock (Chair) • Professor Lona Mody • Mr Mark Stott • Dr Leah Jones • Mrs Susan Bennett • Mr James McMahon • Mrs Annabelle Stigwood • Mrs Anita Astle

Wessex DIET: Determining the Impact of covid-19 on food sEcurity in young families and Testing interventions Joint Lead: Professor Nisreen Alwan and Dr Dianna Smith . Co Applicants : Nida Ziauddeen , Tim Lloyd, Dr Marta Disegna , Ravita Taheem, Sally Shillaker, Fran Richards, Duncan House, Sara Crawford. Partners: Southampton City Council, University of Southampton, Bournemouth University, Solent NHS Trust. starts: 1 November 2021 Ends: 31 March 2024 Publications: Household food insecurity risk indices for English neighbourhoods: Measures to support local policy decisions News: New map shows regions in the UK with a higher risk of food insecurity Lay Summary Aim of the research : We will explore the impact of system shocks on food security, diet quality and health in young families across Wessex, using the covid-19 pandemic and lockdowns as an example of such shocks. We will find out if Council-supported food aid initiatives to counter difficulties around adequate and healthy diet are acceptable, well taken-up and impactful in local populations. This will lead to a toolkit that can be used by Councils to decide which initiatives are best for their populations. Background: The covid-19 pandemic restrictions are likely to have negatively impacted UK families in many ways, including food insecurity (not having enough food because of cost or other barriers, or not having good quality food). Food insecurity has negative health impacts in the short-term including weight gain, malnutrition, poor mental health; these may lead to longer term health outcomes including obesity, diabetes, anxiety, and depression. Local Councils in Wessex have a range of initiatives to help this situation, including food pantries, where eligible families can purchase a range of items at a greatly reduced price, and recipe boxes. Design and methods During this 2-year project we will: Use statistical modelling to explore the effect of the covid-19 pandemic on important aspects of health and wellbeing in Wessex’s families with children under age 12, including their diet quality, food availability, weight status and mental health. Interview families to explore how they coped with the changing social and economic circumstances during the pandemic particularly in relation to their food quality and purchasing behaviours, Work with the local Councils in Southampton and Dorset to evaluate the initiatives to improve diet in disadvantaged families including food pantries. Public Patient Involvement: We involved public contributors in the design of this research through three meetings with 12 contributors overall. We have a public contributor as a co-applicant. Our PPI activities will ensure the interventions reflect the individual needs of young families in the target groups, and that the outreach activities to support the interventions are properly communicated. We already have ongoing public engagement activities involving Sure Start within our existing ARC project which we will continue to utilise. We have and willcontinue to actively involve people on the frontline of food aid systems in shaping this research. Dissemination: We will produce an implementation toolkit for Councils to aid decision-making on food-aid initiatives. Non-academic outputs will be specific to the audience and will include videos, presentations, social media posts and flyers. For public health/councils, short reports on the findings in the form of policy briefs will add to academic content and presentations. We will follow successful models like the oral health posters to Family Hubs delivered by Solent Health.

Avoiding care escalations through targeted care coordination for people with multiple long-term conditions – a knowledge mobilisation project Chief Investigator: Simon Fraser, Professor of Public Health, University of Southampton Team: Nisreen Alwan, Professor of Public Health, University of Southampton, Lead for the Healthy Communities theme (from 1st Oct 2024), NIHR ARC Wessex. Robin Poole, Consultant in Public Health, Southampton City Council. Michael Boniface, Professorial Fellow of Information Technology, Director of the IT Innovation Centre, University of Southampton, and lead for the Workforce and Health Systems theme, NIHR ARC Wessex. Kelly Cheung, PPI lead, NIHR ARC Wessex and University Hospitals Southampton. Emilia Holland, Public Health Registrar, University of Southampton. Seb Stannard, Research Fellow, MELD-B project, University of Southampton. Claire Sheikh, Senior Pharmacist, Living Well Partnership, Southampton. Kelly Hislop Lennie, Principal Academic in Adult Nursing, Bournemouth University. Lynn Laidlaw, Patient and public contributor and researcher, PPI contributor MELD-B Sally Dace, PPI contributor MELD-B and Wessex ARC James McMahon, PPI contributor MELD-B, School of Primary Care Research UoS, South West Genomic Medicine Service. Lead PPIE for DIALOR, a digital intervention addressing frailty in Bournemouth University Partners: Hampshire and Isle of Wight Integrated Care Board, University Hospital Southampton NHS Foundation Trust, Bournemouth University, Southampton City Council, Living Well Partnership. Start: 1 October 2024 End: 31 March 2026 Summary This project is about taking knowledge that has been learned from two ongoing research studies about living with multiple long-term health conditions to see if we can apply it in a ‘real life’ setting in a large general practice in Southampton. Two research projects called ‘MELD-B’ and ‘the ARC Treatment Burden study’ have identified many aspects that make living with multiple long-term conditions challenging for people. This ‘workload’ might make it more likely that people feel overwhelmed by their health conditions. If people have a high workload, and particularly if they are frail, this can end up with them needing to be admitted to hospital. We have also identified that some aspects of people’s early life can make it more likely that they are admitted to hospital in middle age. If such challenges are recognised in advance and appropriate help provided, such unplanned admissions might be avoided. Care coordinators are people working in NHS settings, including GP surgeries, to identify and support people at risk of such admissions. They have a lot of people on their books and it can be challenging to know who needs what help, and who needs it most urgently. We want to see if the things we have learned from our previous research study can help the care coordinator make these decisions. In this short project we plan to do this in a large practice in Southampton, the Living Well Partnership, which looks after about 45,000 people. We plan to: · collate all the aspects identified in these studies that might make people more vulnerable · make sure we understand the current way care coordinators identify and engage with patients · work with all the relevant people in the practice to make sure we take people on this journey with us · undertake some workshops, co-led by PPI contributors, to co-develop the strategy for adding new aspects (such as the ‘workload’ and early life aspects mentioned above) to current approaches · test the addition of adding these in Living Well Partnership and evaluate the process We will share our findings at an event involving as many of the team from the Living Well Partnership as we can and get their feedback. This event will also include other relevant interested parties, such as those from the Integrated Care Board. PPI contributors have been deeply involved in the work of MELD-B, have helped to shape this proposal and will continue as co-investigators. They will be reimbursed for their contributions according to NIHR guidance.