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< Back PPI reflection on experience in attending an academic conference "Prescribing and deprescribing is something we do to patients so their viewpoint does matter." Rajneesh Kaur and Eloise Radcliffe Picture: Kinda Ibrahim, Eloise Radliffe, Nina Fudge, Jalpa and Rajneesh Kaur In September 2024 I attended an International Conference on Deprescribing in France (ICOD2). I'd been looking forward to this event since first coming to know of it about a year before. When registering for the conference it stated that they welcomed all 'researchers, clinicians and teachers in the deprescribing field'. This prompted me to email the organisers to ask if I could attend as a non-healthcare professional. They were very welcoming and reassured me that anyone can attend. I was excited not only to see what was happening at the cutting edge of deprescribing but also because I was going to meet the Southampton team in person for the first time at the conference. We had communicated over Teams before but the conference was a great way to meet each other in person. We recognised each other straight away and were in close company over the two days at the conference. The actual content of the conference reconsolidated a lot of what I had learnt about deprescribing so far. It was great to see leading figures deliver live and to be able to ask questions and have conversations with them. When mingling in the workshops and over lunch, people were interested to gain our perspective — I was attending with a good friend of mine who is also a non-healthcare professional like me, but as she is a solicitor, the healthcare professionals at the conference seemed very interested in the legal angle of deprescribing when speaking to my friend. This legal area does need exploring I feel. The viewpoint of patients and carers seemed like something the healthcare professionals valued, yet I felt it was under-represented in the conference. Prescribing and deprescribing is something we do to patients so their viewpoint does matter. I enjoyed listening to the presentation from David Gardner in particular, who shared a patient's experience, with the patient (George) interacting live on the call. This really brought to life how deprescribing can make a difference. Bringing the patient's perspective forward can bring inspiration and motivation to healthcare professionals to be more comfortable with stepping into the unknown and trying something new. I also appreciated that the conference organisers were trying to be open and ethical about their funding, especially pleased that they were not accepting funding from pharmaceutical companies. This made it seem OK that we didn't have any extravagant lunch arrangements, I'd rather that and keep the soul of the conference alive. Also, my friend and I were humbled and surprised to see that every other person at the conference was a pharmacist. It was almost as if after working with medication so closely, these pharmacists realise the harm as well as the good that medicines can do and therefore have come to the conference to understand and acknowledge the importance and challenges of deprescribing. Although deprescribing should be a part of prescribing, it is practised far less than prescribing. In fact, I would say that the benefits of deprescribing are just now being realised and are not mainstream at all. As a result, it seemed very challenging when I first set out looking for pathways to come off medication safely and only then eventually even came across the term deprescribing. The conference was international and it opened doors to meet people from other countries who were on the same page. I especially remember my encounter with a researcher from Denmark who said something very profound, she explained that it's not the patients that need educating, if we make a safe space where people can be deprescribed from medication — they will come. This researcher had struggles with a loved one who is on medication. This conference was a great platform to network and strengthen beliefs in deprescribing. It was only the second international conference ever held on this topic and I am very much looking forward to ICOD3 Eloise: One of the highlights of attending the International Conference on Deprescribing in Nantes, France, was meeting Rajneesh in-person, our highly valued and very engaged Patient and Public Involvement (PPI) team member. She has been a PPI group member of the ARC Wessex-funded MODIFY study (Medication review and deprescribing intervention for older people living with frailty in primary care) and is now chairing the PPI group for a new ARC Wessex-funded study DOMINO-HF (Deprescribing and medicines optimisation in older people with heart failure). I had previously only met her online and the conference was a great opportunity to talk in-person about the presentations and workshops by international leaders in the field of deprescribing and discuss Rajneesh’s ideas for future projects. The conference was a very welcoming and supportive environment and I would definitely agree with Rajneesh that more patients and caregivers should be represented at the conference, and will hopefully be encouraged to attend and participate in the next one, ICOD3 in 2 years time! Previous Next

Deprescribing and Optimisation of Medicines IN Older people with Heart Failure and Frailty (DOMINO-HFF) Chief Investigator: Dr Eloise Radcliffe, Senior Research Fellow School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Team: Dr Kinda Ibrahim, Associate Professor, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton Dr Sara Mckelvie, Clinical lecturer, School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton. Dr Stephen Lim, Principal Clinical Research Fellow, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Chris Young, Consultant Geriatrician, Medicine for Older People, University Hospital Southampton, Southampton General Hospital. Dr Nina Fudge, Lecturer, Centre for Primary Care, Wolfson Institute of Population Health, Queen Mary University of London. Dr James Sheppard, Associate Professor, Nuffield Dept of Primary Care Health Sciences, Medical Sciences Division, University of Oxford. Mrs Clare Howard, Clinical Lead for Medicines Optimisation, Health Innovation Wessex. Prof Simon Fraser, Professor of Public Health, School of Primary Care, Population Sciences and Medical Education,Faculty of Medicine, University of Southampton. Dr Peter Cowburn, Consultant Cardiologist, University Hospital Southampton, Southampton, General Hospital. Ms Rajneesh Kaur, Patient and carer representative . Partners: University Hospital Southampton NHS Foundation Trust, University of Southampton, Health Innovation Wessex, Queen Mary University of London, University of Oxford. Start: 1 October 2024 End: 31 March 2026 Background Heart failure ( HF) is a long-term disease with symptoms including breathlessness, tiredness and leg swelling. HF is more likely to affect older people and is the leading cause for hospital admission in the UK for those aged over 65 years. Most people with HF have other health conditions therefore taking multiple medication is common. Guidelines for doctors to treat HF recommending multiple medications to help improve symptoms and help people live longer, have led to concerns about further increases in numbers of medication for patients. The application of these guideline in older adults has had the unintended problem of more complex medication regimes, and possible impacts on physical ability and quality of life. More generally, taking multiple medication can increase risk of side-effects, hospital admission and death for older people. The research studies used to decide guidelines for doctors to treat HF, may underestimate the risks of taking multiple medicines as they do not include populations most vulnerable to potential harmssr such as older adults and those with frailty. This leads to uncertainty about the long-term benefits and risks of HF medications in the very old and frail populations who are, nonetheless, still treated based on the guidelines. Prescribing should ideally be tailored to each patient’s health condition and their preferences. These factors will change over time, supporting the need for regular medication reviews, and where appropriate, the need for reducing, stopping, or switching drugs in order to improve outcomes. However, this may be challenging due to the lack of research studies, as patients and multiple health care professionals involved in caring for older patients with HF, may experience uncertainty and have differing approaches to the application of the guidelines. Aim To examine research studies on prescribing and deprescribing of HF medication in older people, including those living with frailty. This will inform current guidelines for doctors to treat HF. It will also identify gaps in the research on this vulnerable group commonly prescribed HF medication, but at the greatest risk of experiencing harmslinked with taking multiple medications. Design and methods Two literature searches will be carried out pat, guided by an information specialist librarian,following the established guidelines. Patient, public and community involvement This study has patient and public involvement (PPI) throughout. We will have PPI group of older people and carers living with HF, chaired by our PPI lead who is also a research team member and has contributed to study development. The group will contribute to the interpretation andcommunication of findings on a wider scale. Dissemination Findings will be promoted to the wider research and local clinical community through ARC Wessex networks and our links with Health Innovation Wessex , and in journal publications and conference presentations. We will also promote findings through the links that we will make with local and national charities such as Age UK Southampton, Wessex Heartbeat and the British Heart Foundation.

ADOPTED: Nurture-U (Southampton): A longitudinal survey for student metal health and wellbeing Principal Investigator: Lucy Dorey Start Date: 1 July 2021 End Date: 1 July 2025 Background: Promoting good mental health within university students is a priority. Anxiety, depression and self-harm are rapidly increasing. University mental health services report demand beyond their capacity. Effective ways to prevent student mental difficulties are urgently needed. Further, university should be a positive life experience and promote students' emotional fitness and ability to thrive. Research and student feedback recommend changing university culture, environment and teaching to promote wellbeing. Stepped care in which students move through different steps based on need is also suggested to improve student wellbeing and service capacity. This starts with wellbeing promotion and prevention for all students, steps up to self-help for those with mild symptoms and to professional support for those with elevated symptoms. However, these approaches have not been rigorously tested in universities. We don't know which elements best promote good student mental health. We don't know what approaches work best for the diverse student body across gender, ethnicity, sexuality, sociodemographic background. We will test initiatives within the university environment and at each of the steps, see which initiatives students use, how well they work, and identify which work best for which students across diverse groups. Students will be active partners in shaping, delivering and evaluating all research. We will use repeated twice-yearly online surveys across 6 universities (110k undergraduates) to assess student wellbeing and mental health and understand what helps or hinders students seeking and getting help. A digital self-monitoring tool allows students to track their wellbeing, stress, and what support they use over time so we can map how they move through stepped care and how different steps interact with each other. To test whether changing university environment promotes wellbeing, first we will evaluate embedding compassion into education: teaching about diversity and mental health, practising kindness and understanding for self and others, and making assessment more flexible and responsive to students. Focus groups will explore how students experience this approach. Second, we will introduce a voluntary online mental health literacy course for first year undergraduates that teaches what influences mental health, how to promote wellbeing and how to seek help. Surveys before and after the course will test if it increases students' knowledge, healthy behaviours, helps-seeking and wellbeing. To better understand how to make self-help work for students, randomised trials will test book-based guided self-help to build personal strengths, unguided digital self-help to prevent depression in high-worrying students and digital self-help for depression and anxiety. We will compare supported versus unsupported digital cognitive-behavioural therapy, meditation and peer support apps to find out which app(s) students find most acceptable and explore which students most benefit from. We will test self-help with and without support because unsupported self-help can reach vastly more people and there is uncertainty about whether and for whom supported self-help is more effective. To improve the efficiency of student mental health services, we will test if adding a digital self-monitoring tool shared between student and clinician improves student experience and time to recovery by enabling care to be more proactive and responsive (e.g., more frequent meetings if symptoms rise). From this research, we will develop an evidence-based integrated model of inclusive and acceptable student wellbeing and mental health support. In partnership with students and university leaders, this model will inform policy recommendations. We will develop guidance, courses and tools to promote student wellbeing that are easily added to existing systems or that use tried-and-tested low-cost technology to ease their adoption and ongoing use.

ADOPTED PROJECT: How to Support children with cancer, or another serious condition, and their parents during the COVID-19 outbreak How to Support cHildren with cAncer, or another serious condition, and theiR parents during the COVID-19 outbreak?: understanding Experiences, information and support needs, and decision-making – the SHARE study Chief Investigators: Professor Anne-Sophie Darlington Professor of Child and Family Psychological Health, School of Health Sciences, University of Southampton, SO17 1BJ, UK Email: a.darlington@soton.ac.uk Dr Bob PhillipsHonorary Consultant in Paediatric and Teenage and Young Adult Oncology,The Leeds Teaching Hospitals NHS Trust, Leeds Dr Jess Morgan NIHR Clinical Lecturer in Paediatric Oncology, Centre for Reviews and Dissemination, University of York, York Mr Ashley Ball-Gamble Children’s Cancer andLeukaemia Group Project team: Dr Nicole Collaço – University of SouthamptonDr Arvind Nagra – University Hospital Southampton NHS Foundation TrustDr Luise Marino – University Hospital Southampton NHS Foundation Trust Organisations involved: University of York, Children’s Cancer and Leukaemia Group, University of Southampton, University Hospital Southampton NHS Foundation Trust, The Leeds Teaching Hospitals NHS Trust, Kidney Research UK, Kidney Care UK, British Heart Foundation, Children’s Heart Foundation, Cystic Fibrosis Trust, Harry’s Hat, Shine, Together for Short Lives, The Martin House Research Centre. Summary Children and young people with cancer may be particularly vulnerable. Those undergoing treatment have a weakened immune system, meaning they will find it more difficult to fight infections. [1] Comprehensive advice for parents has been compiled by experts and disseminated through the UKs Children’s Cancer and Leukaemia Group (CCLG).[1] However, we urgently need to increase our understanding of evolving experiences, information needs and decision-making of these families under these extraordinarily stressful circumstances. Only through investigating parents’/main carers’ experiences and needs will we be able to tailor and provide the right support, in terms of guidance, information updates, and online interventions to reduce distress and anxiety. Supporting decision-making Children and young people undergoing treatment face ongoing compromises to their immune system, which forces families to manage infection risks regularly. Decision-making under these threatening circumstances needs to be well understood. Furthermore, we know that parents and health professionals differ in terms of what underpins their decision-making. For example, when making decisions related to treatment for febrile neutropenia (with an increased risk of infection) parents value and assess quality of life, fear, and comfort differently to health professionals.[2] During the COVID-19 outbreak, children undergoing cancer treatment are perceived to be more at risk, and thus families will need to assess the information they receive and continue to make decisions in a changing environment. In addition, information provision through established media outlets and social media is constant and everchanging, and not always reliable. This illustrates the importance of investigating children’s and parents perspectives and experiences. Decision-making involves the uptake of information relating to benefits, risks, and uncertainties, but most importantly, this is guided by values and preferences.[3]Families have to construct them in the moment of decision making, based on the available information.[4] When information changes, choices change, producing inconsistencies and difficulties.[5] Again, congruence between families’ preferences, values and changing experiences need to be understood to allow them to make the best decisions in looking after their children. Without this data we will not be able to support them, nor advocate for them on a broader level. Reducing anxiety and stress Families across the country are worried; a rapid systematic review of the experience of families under quarantine for recent severe respiratory viruses (SARS, MERS) shows very high levels of traumatic distress.[6] This has led to the development of support materials and interventions: a book for children ‘Dave the Dog is worried about coronavirus’ developed by clinicians,[7] guidance developed by the Universities of Reading and Oxford to support children and young people.[8], and general guidance to manage anxiety for young people, developed by psychologists.[9]. Children with cancer and their families are particularly worried as their child is particularly vulnerable. A 6-week online intervention, iHOPE, [10,11] providing psychoeducation targeted at the parents of children who have cancer has been piloted, and an evaluation of opening greater access to this programme is planned. Many other support services, generally delivered by face to face meetings and group sessions, are transitioning to an online delivery. These will not be strictly ‘programmatic’ and may be ongoing. During this period of implementation of this resource into the health service, there is a need to simply evaluate its effectiveness, by introducing a short assessment of anxiety and stress before and after the delivery of the intervention. The current study proposes to ask parents to complete a short (to minimise burden) validated questionnaire before and after the intervention. Research Aim and Objectives The study will consist of two work packages (WPs). The aims of WP 1 are 1) to explore experiences, information and support needs and decision-making, and 2) to explore how these change over time as the situation with COVID-19 evolves. The aim of WP 2 is to evaluate whether proposed online interventions to support families reduce anxiety and stress. Research publication: COVID-19: experiences of lockdown and support needs in children and young adults with kidney conditions Yincent Tse, Anne-Sophie E. Darlington, Kay Tyerman, Dean Wallace, Tanya Pankhurst, Sofia Chantziara, David Culliford, Alejandra Recio-Saucedo & Arvind Nagra COVID‐19 and children with cancer: Parents’ experiences, anxieties and support needs Anne‐Sophie E. Darlington, Jessica E. Morgan, Richard Wagland, Samantha C. Sodergren, David Culliford, Ashley Gamble, Bob Phillips

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Wed, Oct 09 | Chilworth DALLI toolkit launch - Domestic Abuse and Life Limiting Illness Enhancing the identification and response to domestic abuse for people living with a life-limiting illness: The DALLI Toolkit Time & Location Oct 09, 2024, 1:00 PM – 2:00 PM Chilworth, 3 Venture Rd, Chilworth, Southampton SO16 7NP, UK About the event OR via MS Teams Please click here for more details and to register You are invited to the launch event for the DALLI Toolkit – a resource developed by researchers at the University of Southampton and NIHR Applied Collaboration Wessex in partnership with health and social care professionals, victim-survivors, and specialist domestic abuse organisations - to provide information and practical suggestions for identifying and responding to domestic abuse experienced by people living with a life-limiting illness. The Toolkit is designed for those working in hospice and palliative care services, as well as local authorities, the third sector and anyone who provides care or support to those living with a terminal illness and approaching end of life. The event is an opportunity to find out more about the Toolkit, learn how it can support you in your practice and professional role and hear from a victim-survivor. It is also a chance to see the first screening of the DALLI Toolkit film. For further information please email: dalli@soton.ac.uk Please note : the event will contain content describing domestic abuse in the context of life-limiting illness. Hearing about this can be difficult, so please feel free to step away during at any time if you need to. If you are affected by abuse, you are not alone, and people are ready to listen and help. You can contact the National Domestic Abuse Helpline on 0808 2000 247 anytime. You can also webchat with an advisor Mon-Fri, 3-10pm on https://www.nationaldahelpline.org.uk/en/Chat-to-us-online . Show More Share this event