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  • COMPLETED: Digital support for maintaining physical activity in people with long-term conditions

    91dc7d16-9cb6-45e1-b40a-33037865948b COMPLETED: Digital support for maintaining physical activity in people with long-term conditions What promotes and prevents health professionals using ‘digital’ technologies to support people with long-term conditions (LTCs) to maintain physical activity and improve their health and wellbeing? Principle Investigator - Professor Mary Barker ( meb@mrc.soton.ac.uk ) Senior Research Assistant – Dr James Gavin ( j.p.gavin@soton.ac.uk ) Team Prof Mary Barker (PI), Prof Maria Stokes (Co-Lead), Prof Suzanne McDonough (Co-Lead at RCSI), Mrs Luisa Holt, Dr Aoife Stephenson (RCSI), Mr Paul Muckelt, Dr Nisreen Alwan, Dr Katherine Bradbury, Dr James Faulkner (University of Winchester), Dr Dorit Kunkel, Dr Euan Sadler, Prof Sandy Jack, Mrs Rachael Eckford, Mr Jem Lawson (PPI) and Mr Ranj Parmar (PPI) Project partners • Royal College of Surgeons in Ireland • University of Winchester What did we find? We interviewed 15 GPs and health professionals to find out their experiences of using digital technologies, such as online consultations, mobile-phone applications (or ‘apps’) and websites, to support people with LTCs to manage their health. We now have a better understanding of the factors preventing and promoting the use of digital technologies by health professionals to support people with LTCs in the NHS. These included: Preventing : one ‘app’ will not suit all LTCs, ‘apps’ must be user-friendly and accurate, clinicians need to dedicate time to the technology, security risks, patients need to have digital literacy, and long-term investment is required (time and finance). Promoting : ‘apps’ being evidence based, peer/social support of GP networks (including positive feedback), charity endorsement, COVID-19 changing people’s attitudes to digital health, ‘apps’ being linked to a hospital’s IT systems, accountability/monitoring of ‘apps’, and digital champions What difference will this make? Better understanding of the factors preventing and promoting the use of digital technologies by NHS healthcare professionals can help researchers develop new assessments and interventions to help people with LTCs to self-manage their conditions. In future, it could inform a regional evaluation of existing self-management programmes and initiatives to support people with LTCs to maintain their health and physical activity, from a digital perspective What are we doing with this? We have published one journal paper in PLOS One ( 2024 ) and co-investigator, Prof O’Donough published one systematic review paper in Digital Health ( 2024 ) In conjunction with the ‘non-digital’ MOTH study, we are in the process of applying for funding for: A PhD studentship, and NIHR Research for Patient Benefit (RfPB) award Maintaining physical activity and social connections for people with multiple LTCs: intervention development. The aim is to produce a plan for how best to proceed with improving partnership working within Wessex. The aim is to produce a plan for how best to proceed with improving partnership working within Wessex. What next? We plan to combine the non-digital and digital findings from the MOTH programme and apply for NIHR RfPB funding to co-design a 12-week follow-on maintenance intervention to sustainphysical activity for people with multiple LTCs following existing PA programmes between healthcare and community settings. The intervention will be developed informed by and aligned to the NHS Neighborhood Health agenda (2025) and current Southampton Integrated Neighborhood Hubs project . A suitable funding call is the NIHR Research for Patient Benefit (RfPB) programme (tier 3), with a stage 1 deadline of February 2026. Digital MOTH summary Non-Digital Moth Summary Publications https://doi.org/10.1177/20552076221089778

  • PROCED-DST: PROactive, Collaborative and Efficient complex Discharge – Decision Support Tool

    0b30aba5-25eb-4a0f-ba09-0cc56d28cb07 PROCED-DST: PROactive, Collaborative and Efficient complex Discharge – Decision Support Tool Chief Investigator: Dr Chris Duckworth, Senior Research Engineer, University of Southampton Email: C.J.Duckworth@soton.ac.uk Team: Professor Michael Boniface, Director of the IT Innovation Centre, University of Southampton, (HEI) Dr Carlos Lamas-Fernandez, Associate Professor, Southampton Business School Dr Dan Burns, Senior Research Engineer, University of Southampton Dr Mark Wright, Patient Flow Lead, University Hospital Southampton NHS Foundation Trust (NHS) Rachel Leyland, Complex Discharge Team Manager, Hospital Southampton NHS Foundation Trust (NHS) Ian Dickerson (PPIE) Partners: Hampshire and Isle of Wight NHS Foundation Trust, Hampshire Hospitals NHS Foundation Trust, Isle of Wight NHS Trust, Portsmouth Hospitals University NHS Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, Health Innovation Wessex. Start: 1/10/24 End: 31/3/26 Summary As of January 2023, 14,436 patients a day (14% of total capacity) remained in hospital despite being well enough to leave. This is due to delays in arrangements for onward care. Discharge delay occupies beds putting pressure on a wide-range of NHS services. There are currently 7.6 million patients waiting for treatment and an average waiting time of 15 weeks. Leaving hospital at the right time is also better for patients for many reasons. It reduces physical and mental deconditioning and chance of hospital infections. Part of the problem is organising further care required after a hospital stay. For patients in hospitals for seven days or more, 65% are delayed because they are waiting for after-care including care at home, short-term reablement and permanent care or a nursing home. Discharge planning involves lots of people and organisations from patients through to clinical teams in hospitals, community care, and local authorities. Organising care takes time considering the availability of social care services and mediation with patients and their families. It is therefore important that patients are assessed, and needs identified as early as possible within a hospital stay to give time for planning and conversations. An initial discharge assessment is supposed to be made with the first 24 hours of hospital admission. In practice this planning is provided for less than 50% of patients. Staff workload and inability to identify care requirements can delay assessments. Aims: In a previous project called PROCED, we developed a machine learning model to predict onward care needs when someone is admitted to hospital. Machine learning is a computer programme that can learn from information about patients and the services they use to make predictions. We have compared the model against predictions made by clinicians, and the results have shown it works well. In PROCED-DST we aim to investigate how a machine learning prediction can support better discharge planning. By planning care earlier during hospital stays gives more time for patients and families to discuss care needs with care workers. Ultimately we aim to improve the chance that patients can leave hospital on time. Approach: We will consider how a computer algorithm can help clinicians organise onward care by predicting admitted patient’s potential onward care needs. We will organise collaborative sessions with clinicians, patients, and computer programmers to understand how it could be used in the hospital and consider how it may benefit or impact patients. Patient and Public Involvement: Patients and Public will be directly involved in designing, testing and evaluating a decision support tool and help decide how it should be used by care providers to help plan onward care. PPI will influence data usage, patient journey, algorithms and how this should be communicated. The public will participate in a steering committee who will organise a series of workshops to engage patients and public in the research. Dissemination : Communication materials will engage the public and decision makers. We will work with PPIE support networks to develop accessible communication and ensure distribution to diverse communities. Evidence of effectiveness, safety and acceptance will be published. A decision support tool with computer-based decision support will be demonstrated. The outcomes will be championed with institutional, regional, and national implementation teams.

  • ADOPTED: Community Alternatives to aCute Hospitalisation for Older People who have Fallen (CAtCH-Falls)

    3a7ef7ca-de0e-49f1-be5c-8349df40131c ADOPTED: Community Alternatives to aCute Hospitalisation for Older People who have Fallen (CAtCH-Falls) Principal Investigator: Dr Sara McKelvie, GP & NIHR Clinical Lecturer at the Primary Care Research Centre, University of Southampton. Team members: Lois Woods, Southampton Health Technology Asessments Centre, University of Southampton. Dr Rachel Dewar-Haggart, Primary Care Research Centre, University of Southampton. Professor Peter Griffiths, Health Sciences, University of Southampton Associate Clinical Professor Jacqui Prieto, Health Sciences, University of Southampton Dr Dan Baylis, Chief Medical Officer, NHS Solent Foundation Trust Dr Syed Hasan, Clinical Lead for Virtual Wards, NHS England Dr Elizabeth Angier, PhD student Main funding: NIHR School For Primary Care Research Starts: 1 April 2024 Ends: 31 March 2026 Summary Each year 30% of older people living in the community fall and are often taken to hospital for assessment. National guidelines recommend that after a fall, older people have a thorough check up and help to prevent further falls. We currently don’t know what the best assessment is for older people who fall and are assessed at home. There are several health services which can assess people in the community without a hospital visit. These can be described as “Community Alternatives to aCute Hospitalisation” (CAtCH) services. In different areas in the country these services have different team members, resources and ways of working. Research is needed who and what is needed to work in CAtCH services, particularly to support older people who have fallen. This study plans to look at previous work in this area by looking at published articles, service reports, government documents and internet resources to find out what is essential for these services. We also plan to survey and interview people who work in CAtCH services in the UK to understand what is available for older people who have fallen. The research findings will be used to develop resources for patients, the public and healthcare workers to showcase CAtCH services. The team also plan to produce a report for healthcare commissioners and support policy-makers. It will also allow the team to apply for further research funding in this area including further projects to look at public awareness of CAtCH.

  • Gabrielle Palermo

    Senior Research Assistant < Back Gabrielle Palermo Senior Research Assistant Ageing and Dementia Gabrielle Palermo is a Senior Research Assistant at the NIHR ARC Wessex Mental Health Hub, University of Southampton. She supports quantitative research on alcohol use disorder in older adults and contributes to other Hub projects involving complex routine datasets, including the OLA study. With over 20 years of experience in applied statistics, Gabrielle specialises in quantitative methods for epidemiological, socioeconomic, and public health research, particularly in the analysis of survey and administrative data. Her expertise includes multilevel modelling, complex survey design for cross-sectional and longitudinal data, data cleaning and linkage, and the treatment of missing data. She holds an MSc in Population Studies and a BSc in Statistics from ENCE–IBGE (Brazil). Her doctoral research focuses on statistical methodologies for unbalanced longitudinal data in sample-based educational panel studies, with emphasis on school effectiveness and pupil mobility. Since 2022, she has worked across multiple departments within the Faculty of Medicine at the University of Southampton, contributing to research in epidemiology and clinical trials. Previous Next

  • Evaluating impact of personalised care at service at service and system levels: Learning from the Wessex Academy for Skills in Personalised Care (WASP) programme.

    5241b3d8-a7e9-409f-8d8a-e86421d8cdd5 Evaluating impact of personalised care at service at service and system levels: Learning from the Wessex Academy for Skills in Personalised Care (WASP) programme. Chief Investigators: Professor Mari Carmen Portillo, Professor of Long-Term Conditions. School of Health Sciences. University of Southampton, Dr Louise Johnson, Consultant Therapist and WASP Project Lead, University Hospitals Dorset Team: Dr Beth Clark, WASP Personalised Care Facilitator, University of Southampton Matthew Wood, WASP Digital Lead and current ARC Wessex Statistical Intern Dr Hayden Kirk, Consultant Physiotherapist & Clinical Director Adults Southampton, Solent NHS Trust Janine Ord, Head of Population Health, Dorset Integrated Care Board Fran White, Director of Policy, Innovation and Partnerships, Hampshire and Isle of Wight Integrated Care Board Aisling Flynn, Lecturer in Occupational Therapy and Post-Doctoral Researcher, Bournemouth University Sally Dace, Patient and Public Involvement Representative Luisa Holt, Research Fellow, University of Southampton Partners: Dorset Integrated Care Board, Hampshire and Isle of Wight Integrated Care Board, Dorset County Hospital NHS Foundation Trust, University Hospitals Dorset NHS Foundation Trust, Hampshire and Isle of Wight NHS Foundation Trust, Bournemouth University, University of Southampton. Start: 1 October 2024 End: 31 March 2026 Aim(s) To evaluate if and how the Wessex Academy for Skills in Personalised Care (WASP) programme has led to improvements within healthcare services, and the impacts for patients, services and the wider health system. Background Personalised care focuses on tailoring health services to individuals’ needs and preferences. People who receive personalised care have greater satisfaction, and are more likely to feel in control of their own health and wellbeing. Services that work in a personalised way are likely to use their resource more efficiently - by offering people the right support, in the right way, at the right time. Despite the benefits, widespread adoption of personalised care has been slow. There are many reasons for this – including having healthcare staff who are trained and believe in its importance, and having systems that support its delivery. Since 2018, the Wessex Academy for Skills in Personalised Care (WASP) has been helping NHS services to improve personalised care delivery. This support involves three parts: EVALUATION –understanding current care by collecting the views of service users, frontline clinicians, managers and people who plan services (commissioners) LEARN – training healthcare teams, so they have the knowledge, skills and confidence to change how they work IMPLEMENT – supporting services to identify and deliver improvement projects, with measurable benefits for patients In this research, we will evaluate impact of the programme. This is important to: · know how to improve WASP in the future; · learn how to accelerate the adoption of personalised care within the NHS; · demonstrate impact, so we can spread the benefits more widely. Design We will create a series of case studies from services that have already completed WASP, highlighting learning from the programme, if/how this has been put into practice, and the benefits to service users. We will use interviews and surveys to collect information from healthcare staff, who are working in services that completeWASP in 2024/25. This will allow us to understand peoples experience of the programme, and the impacts this leads to. Interviews will take place at several timepoints, understanding learning development over time. Results will be considered together. Patient, public and community involvement Patient and public feedback has been incorporated into this proposal. Throughout the research, we will work with patient contributors, including a co-applicant, to shape and develop the research programme, ensure we are capturing the most important impacts, and to develop accessible ways to share our findings. Dissemination We will use the findings to create recommendations for how the WASP programme can be improved and spread in the future, reaching more people with long term conditions. We will share results at conferences and in academic journals; and presenting in a range of accessible formats, using the WASP website, social media and in the community.

  • FORTH – FORecasting Turbulence in Hospitals

    d1fc46a9-cf57-4dda-98fb-a4ccb44fa87b FORTH – FORecasting Turbulence in Hospitals Chief Investigator: Edilson Arruda, Associate Professor, University of Southampton Team: Christine Currie University of Southampton Alexandra Hogan NHS Salisbury/ University of Southampton Jamie MacNamara University Hospital Southampton Mark Wright University Hospital Southampton Michael Boniface University of Southampton Carlos Lamas-Fernandez University of Southampton Partners: Salisbury Hospitals NHS Foundation Trust, University of Southapton, University Hospital NHS Foundation Trust. Start: 1 October 2024 End: 31 March 2026 Summary Over time, health systems face changes. Population grows older or hospitals can perform new treatments. It is difficult to match the resources of hospitals with population needs. If they do not match, waiting times for treatment increase and hospitals become fuller. Hospitals being too full can result in worse care for patients. For example, hospitals might need to cancel surgeries. Aim(s) of the research When the usual demand for hospital resources changes, it becomes difficult for hospitals to provide care. We call this turbulence. Our first objective is to define how turbulence can be measured from data. Then, we will use artificial intelligence to understand the causes of turbulence. We will also create models for short-term prediction of turbulence. This will help hospital plan better. Design and methods used This project will look at the records of patients in hospitals to understand what resources they use. The data will give us an understanding of how long certain activities take. For example, the recovery from surgery. We will predict when these times are changing using artificial intelligence. This can help hospitals be alert of upcoming changes, so they choose the best way to react. Patient, public and community involvement (PPCI) We will engage with the views of public, patients and communities during the project execution phase. We will hold workshops with patient groups that have been to hospital. We will understand their views on the planning services. We will also take into account their ideas when defining turbulence. Dissemination This project was co-designed and will be supported by University Hospital Southampton (UHS) and Salisbury Hospital. The results will be disseminated and championed within the partnering institutions, and further presented in workshops involving neighbouring NHS Trusts in Wessex and in the south east and south west of England. We will also publish papers and reports to disseminate the work to a larger audience within the UK and internationally.

  • Social Prescribing Link Workers framework: supporting complex needs of adults living with physical and mental health long term conditions

    862768fa-36ea-4f23-802a-07ca10e5572b Social Prescribing Link Workers framework: supporting complex needs of adults living with physical and mental health long term conditions Chief Investigators: Dr Leire Ambrosio. Lecturer. School of Health Sciences, University of Southampton and Mari Carmen Portillo. Professor of Long-term Conditions. School of Health Sciences, University of Southampto. Team: Skaiste Linceviciute. Research Fellow. Faculty of Medicine, University of Southampton, David Baldwin. Professor of Psychiatry and Section Head, Clinical Neuroscience, Faculty of Medicine, University of Southampton Joseph Jenness. Senior Manager at Southampton Voluntary Services. SO:Linked Jade Topham. Social Prescribing Link Worker, Southampton North PCN William Barnaby Jones. NIHR ARC Wessex PPIE, University of Southampton Traci Carroll. PPIE Representative as part of the NIHR ARC Wessex PPIE group, University of Southampton Siân Brand. Chair of Social Prescribing Network, Social Prescribing Network Partners: Hampshire and Isle of Wight Integrated Care Board, Hampshire and Isle of Wight NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University of Southampton, Anxiety UK, Social Prescribing Network, SO: Linked. Start: 1 October 2024 End: 31 March 2026 Background to the research As part of the NHS Long Term Plan in rolling out an integrated approach built around personalised care, NHS England has initiated the Social Prescribing Link Workers (SPLW) model to offer personalised support for patients in primary care facing continued pressures with long-term conditions, and to bridge fragmented healthcare systems with key community stakeholders through joined-up approaches (NHS, 2019). Our recent SPLW project demonstrated that despite Link Workers’ positive and multifaceted impact, the current efforts lack standardised approach and robust guidance that delay and complicate the work of SPLWs in delivering coordinated support for addressing the needs of adults with long-term physical and mental health conditions. Key challenges related to the lack of collaborative planning, expectations management, and limited communication with multidisciplinary teams. This leaves SPLWs managing complex cases with overstretched workload and with patients struggling to achieve sustainable, long-term support for the management of their physical and mental health LTCs. Aims of the research Informed by the findings of our previous SPLW project, a need has emerged to develop a consistent SPLW framework that sets out sustainable and integrated pathway that can optimise social prescribing services in the community, standardise guidance for training support and is equipped to support the long-term management of complex needs of adults with physical and mental health LTCs. Publications Understanding the potential role of Social Prescribing Link Workers in supporting identified needs of people with physical and mental long-term conditions: a qualitative study | BMC Primary Care | Full Text

  • COMPLETED: Medicines optimisation

    f5c7ef05-9a58-48a5-9c06-02ebd55d89cd 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. This project involved two studies The first study showed that non-steroidal anti-inflammatory drugs (NSAIDs) are still sometimes prescribed for high-risk patients, such as older adults and those with chronic kidney disease. NSAIDs can cause acute kidney injury (AKI), leading to serious complications. This study developed a risk tool for practices to identify those who should not be prescribed NSAIDs. The second explored the frequency of blood testing for patients on Disease-Modifying Anti-Rheumatic Drugs (DMARDs) like methotrexate, commonly used for rheumatoid arthritis. Guidelines recommend 3-monthly blood tests due to potential liver issues. The research found that many tests were seldom abnormal, suggesting that low-risk patients might safely have less frequent tests if further research is done on the safety of risk-stratifying people. 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 was the impact? Non-steroidal anti-inflammatory drugs (NSAIDs) As part of the medicines optimisation project we explored the risks of acute kidney injury (AKI) associated with taking non-steroidal anti-inflammatory drugs like ibuprofen and naproxen. There was a news article here about it: https://www.arc-wx.nihr.ac.uk/post/southampton-led-study-shows-need-for-painkiller-caution-to-prevent-kidney-damage and a publication here: https://bjgpopen.org/content/6/1/BJGPO.2021.0208 We developed a risk score that can help GP practices identify those patients at highest risk of NSAID-associated kidney injury. We have run this risk tool in the Dorset Intelligence and Insight Service (a database covering over 70 Dorset GP practices - more than 800,000 people) and along with colleagues from the AHSN we are running a masterclass with many of the GP practices involved to present the findings and to promote best practice in NSAID prescribing. The aim is to reduce NSAID prescribing in those at high risk of adverse outcomes like AKI. Rheumatoid arthritis (RA) and inflammatory bowel disease (IBD) are prevalent inflammatory conditions, affecting 0.8% and 0.7% of the population, respectively. Disease-modifying anti-rheumatic drugs (DMARDs), such as methotrexate for RA and azathioprine for IBD, are commonly used to control disease activity. These drugs require regular safety blood-test monitoring for liver function abnormalities, kidney function, and bone marrow toxicity. Monitoring is frequent at initiation and less frequent once a maintenance dose is established. In the UK, initiation usually occurs in secondary care, with ongoing monitoring in primary care as recommended by NICE. Regular blood-test monitoring has been linked with anxiety and depression for some patients, incurs substantial costs for healthcare providers, and increases the workload for clinicians and laboratory staff. Despite guidelines, the optimal monitoring frequency has not been established, and the extent to which patients experience prolonged periods with no abnormal tests is unclear. This study aimed to assess the extent of persistently normal blood-test results among people with RA and IBD, and to describe the frequency of blood testing to indicate health-service and patient workload. Targeted monitoring of higher-risk individuals and reduced monitoring for lower-risk patients may improve efficiency and reduce patient workload. Our large, 2-year retrospective cohort study (over 700,000 people) assessed persistently normal blood tests among people with rheumatoid arthritis (RA) taking methotrexate and those with inflammatory bowel disease (IBD) taking azathioprine. Approximately half of the patients experienced no blood-test abnormalities using NICE-recommended tests. In the RA/methotrexate cohort, abnormalities were more common in older people with reduced renal function. For the IBD/azathioprine cohort, abnormalities were less common and mainly involved reduced renal function in older people with comorbidities. The absolute risk of persistently normal blood tests was lowest among older people and those with comorbidities. Since the study, a piece of work led by Nottingham cited our work ( https://www.bmj.com/content/381/bmj-2022-074678 ) and created a model to risk stratify patients taking methotrexate. This is quite likely to change clinical practice when NICE reviews its guidance on DMARDs in due course. This work was supported by representatives of the ‘Getting It Right First Time’ programme, who also linked this issue to sustainability: ‘Saving the planet with reduced routine DMARD blood monitoring frequency BMJ 2023; 382 doi: https://doi.org/10.1136/bmj.p1645’ https://www.youtube.com/watch?v=uSriKPqdbvA&t=6s

  • COMPLETED: INVOLVing pEople with cognitive impaiRment in decisions about their hospital nursing care (INVOLVER): a pilot study

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

  • Refinement of an eFalls tool - a multivariable prediction model for the risk of ED attendance or in-hospital fall or fracture in individuals accessing mental health or learning disability services - eFalls

    747d2c2b-5ef2-4aa3-91d2-49259acbc2a5 Refinement of an eFalls tool - a multivariable prediction model for the risk of ED attendance or in-hospital fall or fracture in individuals accessing mental health or learning disability services - eFalls Chief Investigators: Dr Luis Marino, South West Yorkshire Partnership NHS Foundation Trust Dr Stephen Lim, University of Southampton Co-investigators: Professor Andrew Clegg, ARC Yorkshire & Humber, University of Leeds Professor Sam Chamberlain, University of Southampton Professor Chris Kipps, University Hospital Southampton Start Date: 1st April 2025 End Date: 31st March 2026 Partners: University Hospital Southampton NHS Trust, South West Yorkshire Partnership NHS Foundation Trust, NIHR ARC Yorkshire & Humber, University of Leeds Our Research Falls have a significant impact on physical health with increased risk of morbidity including, dehydration, pain, chest infection and reduced ability to get on with daily activities of living. This may lead to reduced levels of activity, social isolation, depression and anxiety. Individuals with a mental health or learning disability diagnosis have an increased risk of falls. Although several falls screening tools are available, they usually need a healthcare professional to manually screen electronic health records, which may not always be done. Falls have a big impact on health and social care systems and is a leading reason for admission to hospital. Treatment for fractures also costs the NHS an estimated £4.5billion a year. This study aims to take an electronic tool (eFalls) which automatically predicts the risk of falls in older people (over the age of 65 years) and explore whether it accurately predicts the risk of falls in adults with a mental health or learning disability diagnosis. We will use routinely collected data from two health services covering the regions of West Yorkshire and Hampshire and Isle of Wight for this study. Data for patients aged 18 years and above with a known mental health diagnosis will be included in this study. We want to know whether this tool can be used to predict the falls risk among people living with mental health disorders or learning disability and how effective the tool is in predicting falls. If shown to be successful, we will share our findings with healthcare commissioners and policymakers and the following steps will be to pilot this tool in the healthcare setting to explore its impact on patient outcomes.

  • PhD "I'm Lovin' It",

    Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family < Back Truth or Dare? PhD "I'm Lovin' It", Sandra Bartolomeu Pires is doing her PhD and here she updates us in her third yearly update on the slightly eccentric world of studying and managing a young family Oopsy-daisy, sorry guys. I know you've been on the edge of your seat, barely able to focus on your own work, wondering what I have been up to. I'll put you out of your misery then. Ok, so, remember, I moved back to Portugal in the middle of my PhD ( Catch up with it here! ). My smile faded as we hit 45°C and I felt I was being cooked alive. Not easy to deliver level 8 thinking while melting like Olaf in the sun. I'll tell you what, I actually had a great 3rd year on the PhD (read this part while playing “I am on top of the world” , by Imagine Dragons). But today I want to tell you the behind the scenes, because what help am I, if I just show you the “makeup front”... Here is the not-so-sexy-backstage: 1. I got my first-author publication , on an impact factor journal of 3.36. The backstage: this was my 4th submission! 4th! It took me one year from first rejection to finally getting the paper accepted. I am definitely making a mug with a print-screen of my paper. "Bartolomeu Pires et al" aaaah, I like the sound of that… 2. I got another first-author paper accepted the same month I got first published! I went from not having a first-author publication to having two, in a few weeks. The backstage: I worked on this paper for the last 2 years (!!!), in my own time, as a “passion project”. Because of course, I rather write a paper on a Saturday or midnight, than watching "Somebody feed Phil" on Netflix. Of course not! But I was really driven by the accountability towards my patient group and clinical team, that made this work possible (thank you to everyone that supported the REACT-HD group). I tell you what is funny, I got this paper accepted without corrections... No corrections people! This was a service improvement project that I ran and wrote in my own time, and the paper comes back without corrections. Pretty sure those reviewers are angels sent to earth to make doctoral students feel better. 3. I wrote a book chapter for the Handbook Integrated Care right up my alley, focused on the needs of people living with neurological conditions. Backstage: I was pretty much with a month of continuous migraines due to this chapter. Every time I sat to write it my brain was in tears. Creating 10 000 words conscious that I had a PhD waiting to be done added pressure. I also wrote a massive chunk while at the beach. And by "at the beach", I mean I was at home writing while my beautiful sister was taking care of my daughter and entertaining her at the (actual) beach (Thank you, Tânia). I would do it all over again, but it wasn't easy. 4. I got a small grant with the European Huntington’s Disease Network working group (Multidisciplinary Treatment and Care) to run an inspired nominal group technique meeting with experts at the European Huntington Association Conference (and breathe). We worked on standards of care for people living with Huntington’s Disease. I led the meeting in Belgium last October and it was a great feeling to deliver on such a big event. The backstage: I was dying of fear that I would be embarrassed at European level. I travelled 2 days for a 4 hour meeting, nearly lost the train leaving Blankenberge, caught a cold, and was sick with some viral nastiness for the next… 4 months. This embryonic idea will feed into an actual research project, that I am very excited (and equally scared of), and so this under the pump opportunity was incredibly worth it. From left to right, the marvellous Huntington’s Disease Marvel-like team: Ruth Veenhuizen, Dina Sousa, Alexandra Fisher, (little hobbit Me), Annemiek Helmers and Asuncion Martinez Descals. Missing from the picture but equally awesome: Astri Arnesen and so many more members of the working group. I've done more stuff, but I'll stop the humble bragging now. There's something I want my PhD colleagues, particularly the newcomers, to think about. How much you give, and how much you take. See, every single one of these achievements, came with significant hurdles and personal sacrifice. You will be asked so much, constantly, and the more you deliver the more you will be asked to do. So for your own sake, I want you to think of how you will preserve your wellbeing throughout your journey. Here are two strategies that work for me. Don't agree to something right away. Ponder on the possibility. "I'll get back to you on that". "Should we schedule a meeting for next week to discuss that?". "Maybe, let me check my schedule". Never commit straight away. Asses the cost-benefit. Is it worth doing? What's in it for you? Do you need to give your all 100% or maybe 60% will do good enough? Think of how much energy and time you give to a task and make a choice on what to take on. [I had a mentorship session recently, so my mentor’s words are stuck with me (thank you, beautiful mentor).] I want you to have a good experience in your research journey, which, probably and hopefully, will be longer than your PhD. Set the boundaries you want for life, what are you comfortable living with? And make it work for you. I'm not sure I'll manage to write to you again, my scholarship is coming to an end, and I have this disease of wanting to save the world through my research… Impressive that on my 4th year I am still this perky. I blame my supervisors who are so supportive that I believe I can do anything (yes, I have the best supervisors, thank you!) I’m loving it. And somehow, I seem to be hungry at this thought… How about you? Truth or dare? Need me? Find me on socials: Instagram @integrate_hd LinkedIn https://uk.linkedin.com/in/sandra-bartolomeu-pires-841594190 Twitter @BartolomeuPires Email smbp1u20@soton.ac.uk Sandra Sandra Bartolomeu Pires Previous Next

  • POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study

    3163bb6a-69ec-4161-8433-72a5810416ad POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study POST DOCTORAL PROJECT: Understanding, addressing, and meeting the complex needs of people living with long term physical and mental health conditions: a qualitative study Chief Investigator: Dr Leire Ambrosio – University of Southampton Project Team Members: Professor David Baldwin – University of Southampton. Professor Mari Carmen Portillo – University of Southampton, Dr Kate Lippiett – University of Southampton, Dr Lindsey Cherry – University of Southampton, Dr Pritti Aggarwal – Living well partnership – NHS Southampton CCG, Mr Barney Williams Jones – University Hospital Southampton NHS Foundation Trust, Dr Sara Mckelvie – University of Southampton, Ms Linda Lamond – PPI co-applicant Organisations Involved: University of Southampton, Hampshire and Isle of Wight Integrated Care System, Living well Partnership – Southampton CCG. Oxfordshire Primary Care System, Anxiety UK, Mind, Oxfordshire. Background: People with long term physical conditions are 2-3 times more likely to experience mental health problems than the general population, particularly depression and anxiety. At least 30% of all adults with long term physical conditions also have mental health problems. People living with long term physical and mental conditions not only experience hardships relating to health but also have complex psychosocial, environmental, economic, and spiritual needs. Healthcare professionals find it difficult to deliver fully integrated care for these populations, partly due to systematic barriers and the fragmentation of health and social services. The advent of social prescribing link workers as a priority for the NHS provides an opportunity to address some of these hardships and needs. Social prescribing link workers aim to connect people to community local services to address their complex needs through a person- centred approach. However, approaches to social prescribing link worker implementation are variable, with potential pathway gaps, and there is unclear guidance for primary care networks about how to integrate this novel workforce into efforts to address and meet the complex needs of people living with long term physical and mental conditions.

© NIHR ARC Wessex  contact arcwessex@soton.ac.uk

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