Involvement opportunities
Share your lived experience to help shape a better world. These paid opportunities come from a variety of sources, including from ACEP members
Join a confidential advisory group for the Health Research Authority
The Health Research Authority (HRA) promotes and protects the interests of patients and the public in health and social research, with the overall goal of making it easier to do research that people can trust. The CAG is an advisory committee managed by the HRA, which delivers an important role set out in legislation. It considers applications to access confidential patient information without consent under the NHS Act 2006 and the Health Service (Control of Patient Information Regulations)...
Help advance treatments for people with psychosis
MQ, a leading global mental health research charity, is working with universities across the UK (University of Oxford, King’s College London, University of Cambridge, University of Manchester, Durham University) to design a new clinical trial platform for psychosis to help advance the treatments available to people with psychosis. Patient and public involvement is a key part of the design and set-up phase of the project. They want to ensure that the needs and priorities of individuals with...
Opportunity to review study documentation for a trial into breast cancer
The National Institute for Health and Care Research (NIHR) is pleased to share an opportunity to be involved in shaping a commercial research study in triple negative breast cancer. The NIHR wants to hear your experiences of living with, or supporting others with, this condition to ensure that this and future research is as accessible as possible for everyone, by designing it for patients, with patients. This activity involves carrying out an online document review where you will be asked to...
Opportunity to review study documentation for a trial into lung cancer
The National Institute for Health and Care Research (NIHR) is pleased to share an opportunity to be involved in shaping a commercial research study in small cell lung cancer. The NIHR wants to hear your experiences of living with, or supporting others with, this condition to ensure that this and future research is as accessible as possible for everyone, by designing it for patients, with patients. This activity involves carrying out an online document review where you will be asked to comment...
Nonbinary participants needed for mental health research project
This research project aims to gain an understanding of the experiences of nonbinary people who have engaged with mental health services in England. Unfortunately, nonbinary voices have largely been left out of mental health research thus far. This project aims to provide a platform for those voices to be heard. This project is being conducted by Heather Metz through the University of East Anglia School of Social Work. They are looking for: Must be at least age 14 Must have experience with...
Become part of the Cancer Insights Panel and influence the work of Cancer Research UK
Join a group of people affected by cancer to ensure the work we do reflects the needs of cancer patients and their loved ones. Cancer Research UK are looking for people affected by cancer to join their Patient Involvement panel. Our panel members share their experiences so that patient voices are at the heart of the work Cancer Research UK (CRUK) does. They are looking for: People affected by cancer Expected commitment from participants: Until June 2026. A 2-3 hour online meeting once a...
NIHR Public Committee Members
The National Institute for Health and Care Research are looking for members of the public to join their committees. As a public committee member you will need to have a broad interest in and knowledge of health, social care and/or actions to improve public health and address health inequalities. They are looking for: You don’t need to have a scientific background to help shape research. They are looking for members of the public from all backgrounds who are able to use their own experiences...
Opportunity to join a patient and public involvement and engagement (PPIE) group for a heart failure study
This project is looking for people to be part of the patient and public involvement and engagement (PPIE) group to refine and shape the design, analysis, and sharing of results. The project examines conversations between healthcare professionals and patients with advanced heart failure talking about the course of the disease, future care, and the end of life. The research wants to find out where these conversations happen, how doctors/nurses and patients talk together, and how patients feel...
Steering group for research project on sectioning
My name is Ed Kiely (they/them) and I am a postdoctoral researcher at Queen Mary University of London. I am leading a research project that is trying to understand how sectioning creates social inequalities, and the ways it harms survivors. (Sectioning means being detained under the Mental Health Act.) I am conducting research in London (UK) and Amsterdam (Netherlands). The project is open-ended and flexible. The main goal is to produce research that will further the aims of survivors and...
The ACCEPT Study: Lived Experience Advisory Role
The aim of this project is to understand the experience and impact of telling staff about, or disclosing, childhood trauma in community mental health teams (CMHTs) and to develop ways for community mental health care co-ordinators to improve this process. Background: Experiences of abuse, neglect, domestic, severe bullying and community violence in childhood are very common among people who use mental health services. These often have big impacts on people’s mental health.
When a person...
Are you a woman from an ethnic minority background who has had psychological therapy for postnatal depression?
Trainee Clinical Psychologist at the University of Liverpool hoping to understand your experiences of therapy and how your ethnic identity impacted this through a short remote interview. The findings of their research will inform public health services by providing a ‘voice’ for women from ethnic minority backgrounds in shaping culturally sensitive approaches to perinatal mental health in the UK. They are looking for: They are looking for women who: Identify as being from any ethnic minority...
Childhood Experiences and Psychosis Online Study
The Childhood Experiences and Psychosis Online Study is looking for people to take part in their online research study. The research project is being led by Nadia Akers, a Trainee Clinical Psychologist at the University of Manchester, as part of her doctoral training in Clinical Psychology. The research is looking into the link between childhood relationships with primary caregivers and experiences of psychosis in adulthood. The aim of the project is to increase understanding of why some...
Looking for people to take part in a research project exploring the experiences of people with chronic energy-limiting conditions in counselling and psychotherapy
The research aims to explore the experiences that people with chronic energy-limiting health conditions have had in counselling or psychotherapy. It will shine a light on people’s stories and their path through therapy as well as how their therapist worked with them. Experiences may have been positive, negative or anything in between – these are the things this research aims to explore. This study will help to increase the understanding of how counselling is experienced by people with chronic...
Patient and Public Involvement and Engagement (PPIE) group member for a new study looking at what might lead to difficulties in attention and memory in people in the early stages of psychosis (LEVHIPPRO).
Researchers from Kings College London are looking to involve people with lived experience to join a Patient and Public Involvement and Engagement (PPIE) group to steer the design and delivery of their new research study. The study is looking to better understand what might lead to difficulties in attention, thinking and memory in young people who are at risk of developing psychosis. What is the study? People at higher risk of developing psychosis have shown differences in a part of the brain...
London Alliance for the Co-production of Evidence Synthesis (LACES)
Summary: We are recruiting an Advisory Group of about 6 people who will meet regularly to help oversee the London Alliance for the Co-production of Evidence Synthesis (LACES) project. This Advisory Group will reflect different sets of expertise and perspectives from across the UK. You will be asked to advise across a range of evidence syntheses for 1-5 years to inform our methods, processes, and ways of working. We will be looking to you to advise on work planning and methods, advise on the...
Exploring how we can capture and use a wider range of ways of measuring wellbeing related to overweight/obesity than clinical measures such as BMI (Body Mass Index) when conducting evidence synthesis
Summary: What is the project about? We are looking at how we can improve the different parts of and approaches to the methods that we use to combine and make sense of evidence* for different stakeholders (e.g., formal systematic reviews or systematic maps). Such evidence is used to design policies and make decisions about interventions at global and national levels. In the past, much of the research focus has been on aspects of child health such as weight and BMI. We want to understand what...
A project creating a systematic map of evidence related to implementation of international diabetic eye screening programmes
This project is focussed on diabetic eye screening, including screening for diabetic retinopathy. It is the most frequent complication of diabetes and the leading cause of visual loss and blindness if left untreated. National screening programmes have had a large impact on improving outcomes. However, to support better implementation of screening programmes, the National Screening Committee has asked us to bring together all of the research evidence about this. At the moment, we don’t...
Do you or someone you love have lung scarring? Action for Pulmonary Fibrosis (APF) want to hear from you
Pulmonary fibrosis is a type of lung scarring, where the lungs become stiffer and smaller, eventually leading to lower oxygen levels in the blood. This can be caused by a range of other conditions, including asbestosis, rheumatoid arthritis, and scleroderma. However, it is often unclear what the cause might be, as is the case for idiopathic pulmonary fibrosis (IPF). Action for Pulmonary Fibrosis (APF) are looking to design and expand their research involvement network and would love to do this...
The Parent Perspective: What is the experience of receiving a diagnosis of developmental language disorder (DLD)?
This project is being led by Dr Hannah Harvey at Birmingham City University and supported by a team of parents of children with developmental language disorder (DLD). They are trying to understand how it feels to be told that your child has DLD and what is important to parents in the way that the diagnosis is given. They will first be interviewing parents about how it felt to receive the diagnosis, and then parents will be invited to a workshop where they will work together to decide what is...
Are you passionate about transforming patient care through innovation and research activity?
The Innovation, Research, Life Sciences & Strategy (IRLSS) group at NHS England are expanding their Strategic Co-production group (SCG) and recruiting Patient and Public Voice Partners to join the group. Full information for this role can be found here and an application form is here https://forms.office.com/e/A8vSKpeqf9 The SCG group provides strategic advice to the leadership team and consists of both patients and staff, ensuring the voices of people with lived experience actively shape...
Co-creating resources to support family and friends of sexual violence and abuse survivors
Sarah West, a postgraduate researcher at Coventry University, is running a series of workshops with survivors who have been supported by people in their personal networks, such as their friends, partners or family members (informal support), and people who have supported survivors informally. The overall aim of the project is to collaboratively develop resources that can help people who are supporting survivors in the future. They are looking for: The project is keen to hear from adults...
Research study exploring the relationship between childhood trauma and voice-hearing
Beth and Molly are two doctoral researchers at Royal Holloway University of London. They are inviting you to take part in a study exploring the relationship between childhood trauma and voice-related distress in adults that hear voices. If you decide to take part, Beth/Molly will ask you to complete five short questionnaires. These questionnaires will ask about experiences of childhood trauma, relationships with others, coping strategies, and your voice hearing experiences. They are looking...
Looking for people to take part in a research study investigating childhood trauma
A Trainee Clinical Psychologist, Melanie Taylor, is carrying out a doctorate research study via Lancaster University. This study is investigating how experiencing childhood trauma may influence one’s understanding of themselves in adulthood. Childhood trauma is more prevalent than you probably think. According to the UK Trauma Council, 1 in 3 children and young people are exposed to at least 1 potentially traumatic event before 18 years old. Research has suggested that experiencing childhood...
Patient Advisory Panel – Help us review funding for our Centres of Excellence
Help Cancer Research UK to review funding applications for their Research Centres of Excellence in brain, lung, and radiation research and ensure they’re involving people affected by cancer appropriately and effectively. They are looking for: Are or have been affected by any cancer type (patient, carer, family, loved one) AND Have an interest in and understanding of patient and public involvement (PPI) in research. Are willing to represent the needs of a broad and diverse range of people...
Breast Cancer Research Study
This is a new breast cancer research study funded by Cancer Research UK and led by researchers at Oxford University. The study aims to answer important questions about ethnicity and breast cancer. The study will investigate: Why women of African, Caribbean, Indian and Pakistani backgrounds are less likely to get breast cancer but more likely to have more aggressive forms of the disease when they do. How different risk factors vary in women from different ethnic groups, and what influence they...
Do you have experience of cancer? Could you review documents for the National Institute of Health and Care Research?
The National Institute for Health and Care Research is pleased to share an opportunity to be involved in the co-design of a commercial research study (that is a study funded by a pharmaceutical, biotechnology or medical device company) into renal cell carcinoma, by participating in an online document review. They want to hear your experiences of living with this condition to ensure that this and future research is as accessible as possible for everyone, by designing it for patients, with...
Mental Health at Work Lived Experience focus group
Are you self-employed or run your own micro business (with fewer than 10 employees)? Do you have personal experience of mental health problems? Are you a person of colour? If yes, Mind would like to hear from you! Running your own business is never easy and self-employed people often get overlooked when mental health workplace support is developed. Mind would like to invite you to a focus group to talk about your experiences and explore how you’ve been support so far. This will enable them to...
Do you care for a child undergoing dialysis?
The National Institute for Health and Care Research is pleased to share an opportunity to be involved in the co-design of a commercial research study (that is a study funded by a pharmaceutical, biotechnology or medical device company) into children undergoing dialysis, by participating in an online document review. We want to hear your experiences of caring for a child living with this condition to ensure that this and future research is as accessible as possible for everyone, by designing...
Calling all Blind and partially sighted adults
Join the RNIB for an online group discussion to talk about how sight loss has impacted your social relationships. This is an opportunity to discuss your experiences with family and friends, romantic relationships, peers, and your local community. If your social relationships have been impacted, then this is the discussion for you! What will you do? You’ll be invited to attend 2 groups over a 2-week period. Each group will last approximately 2 hours 15 mins (15 min break included). The...
Lived Experience network for Transport for London
People First (Self Advocacy) and BILD are working with Transport for London (TFL) to find out what people with learning difficulties, disabilities and autistic people think about travelling in London and how their experiences of using transport can be improved. They are setting up a new network of people who have learning difficulties, disabilities and autism, to make sure their experiences are fed into decision-making for Transport for London (TfL) projects and policies. The first meeting...
Adapting the Friendship Bench to Black, Asian, and Minority Ethnic Communities in London
The Friendship Bench is an evidence-based problem-solving therapy intervention that is delivered by non-specialist workers (i.e., “local grandmothers”) in the community for people experiencing symptoms of depression and anxiety (You can learn more about the Friendship Bench Intervention here: https://www.friendshipbenchzimbabwe.org/). The intervention was originally developed in Zimbabwe and has since been implemented in several country settings. This project aims to adapt the Friendship Bench...
Lived Experience Advisory Panel (LEAP) representative for understanding self-harm and supporting healing
This is a study run by a first year PhD student, who is also a nurse and lived experience researcher, with a history of self-harm and mental health service use. This research study is exploring self-harm from a lived experience perspective. This research is aiming to: Bring the experiences of people with self-harm to the centre of mental health clinical research Create a visual model of the self-harm healing journey through collaboration Use our visual model to improve healthcare...
Oldham Mental Health Lived Experience Forum member
The Oldham Lived Experience Forum is a group of people with mental health lived experience that want to actively contribute to the quality of support, prevention and recovery services across Oldham in the Living Well partnership and make them more inclusive, diverse and accessible. The Oldham LE Forum helps with the co-production and development of mental health services. The Forum also influences local discussions about mental health, enhances partnership working and integration of services....
Patient views: NHS England obesity medicines pilots
NHS England are testing new ways to access medication for the management of obesity. It will support adults living with obesity outside of traditional specialist weight management services, which are accessed via hospitals. The medicines will likely be prescribed within General Practice and then patients will be managed by specialist weight management services. The management through these services may be provided digitally e.g. on a mobile phone App. The pilot services and access to the...
NIHR Patient Engagement in Clinical Development Service – Document Review – Chronic Lymphocytic Leukaemia
The National Institute for Health and Care Research is pleased to share an opportunity to be involved in the co-design of a commercial research study (that is a study funded by a pharmaceutical, biotechnology or medical device company) in Chronic Lymphocytic Leukaemia by participating in an online document review. We want to hear your experiences of living with this condition to ensure that this and future research is as accessible as possible for everyone, by designing it for patients, with...
Autistic-led research: Exploring Autistic identity and trauma through narrative research
Katrine Callander, an autistic PhD researcher in Social Policy at University of Kent, is conducting research exploring the complexities of trauma and identity among late-diagnosed autistic women. She has lived experience of the research focus area. This research is based on life history and autistic narratives of impacts of trauma, identity, re-claiming of voice and authenticity. It considers cumulative trauma as well as significant traumatic experiences. It also explores potential connection...
Rethink Mental Illness Lived Experience Advisory Board
Rethink Mental Illness are looking for individuals to join their Lived Experience Advisory Board (LEAB). They are looking for: They are looking for people who have lived experience of mental ill health, are passionate about supporting mental health and want to make a difference. This opportunity is open to people 18 and over who are living in England. Expected commitment from participants: As a member of LEAB you would take part in around 6 meetings per year to help advise and support Rethink...
Public advisors needed!
The Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) are looking for members of the public to join the ARC KSS as Theme Public Advisors. They currently have 5 vacancies relating to the following areas of research: Social Care Public Health Economics of Health and Social Care Using NHS patient data for research (sub-theme of Digital Innovation) They are looking for: People who: Are aged 18+ and live in Kent, Surrey, or Sussex. Have experience and a good understanding of the...
CONNECT Study Voices Panel
The CONNECT Study aims to understand the impact of remote consultations in contraception and sexual health services on health inequalities. The study is organised and sponsored by the University of Birmingham and they are setting up a Study Voices Panel and seeking members of the public. Together with the researchers you will help to: Identify health inequalities in NHS contraception and sexual health services Use your local knowledge to help map where health inequalities exist in your area...
Co-production Group member with the Loneliness and Social Isolation in Mental Health research network
The Loneliness and Social Isolation in Mental Health research network (LSIMHN) brings together many different perspectives on the topic of loneliness in relation to mental health. It is funded by the National Institute for Health Research (NIHR) University College London Hospitals (UCLH) Biomedical Research Centre (BRC). This is a funding body that connects academics and clinicians from world leading universities and NHS organisations to support innovative research. The aim of the research...
Measuring personal recovery in older adults with bipolar
A research team from the University of Manchester are currently running a study which aims to develop a measure of recovery in older adults with bipolar disorder. They worked with people who have experience of bipolar to create the measure. Now it is developed, they hope to identify whether this measure accurately represents experiences of recovery in people aged 60+ with bipolar. Once developed, they hope the measure would be used in mental health services to support the treatment service...
Panel Member Support our research into Prevention, Early Detection & Diagnosis
Are you interested in research, early detection and prevention? Do you want to help make a difference and represent the voice of people from underrepresented groups? Cancer Research UK are looking for people to join their panel. You’ll help make sure our decisions reflect the needs and wants of the UK’s diverse population. They are looking for: People affected by cancer AND/OR members of the general public People from diverse backgrounds Expected commitment: The panel meet twice a year...
Panel member – Commercial Data Partnerships Panel
Cancer Research UK are looking for people to help review and discuss requests from commercial organisations to re-use data from Cancer Research UK funded studies. By being part of this panel, you’ll help ensure that the research we support will use data responsibly, securely and to benefit people affected by cancer and the public. They are looking for: People affected by cancer Expected commitment: Time commitment: Until November 2025 with the option to extend. This is a new panel but the...
Research opportunity for relatives and carers of people who experience ‘psychosis’
A Trainee Clinical Psychologist, Alison Byrne, at the University of East London is carrying out a doctoral research project. She is hoping to speak to relatives and carers of people who experience ‘psychosis’, about their views on restrictive practices on inpatient wards. Restrictive practice is unfortunately common on inpatient wards, and can include restraint, seclusion, forced medication, or deprivations of liberty like reduced access to phones and outside space. Carers can often play a...
Study Celebrating Disabled People’s Everyday Skills – What skills do you have?
Abigail Moses, a Disabled PhD student from Durham University, is doing a research study on what skills disabled people have. Abigail developed skills from being a walking stick user and encountering problems like inaccessible buildings, lack of support at work, and negative perceptions from non-disabled people. The project is in collaboration with Difference Northeast and aims to show disabled skills in a positive light and challenge misconceptions about what disabled people can or cannot do....
Can you help Mind by sharing your story?
Mind, the mental health charity, are creating some videos and are looking for people with living experience of personality disorders to help shape the content. They want it to be helpful, and speak to people from all backgrounds. There are two ways to get involved: Share your story in a video Be on a review panel, sharing your thoughts on the informative animations being created They are looking for: They are looking for people who are over the age of 18, live in either Wales or England and...
Research participants needed for study exploring older people’s experiences of returning home from hospital to receive further support
The project is being led by Researcher Toby Connell, who is also a qualified Social Worker working at Norfolk County Council. The research project is funded by the NIHR (National Institute for Health Research), and Toby is leading a research team comprising of four other social care practitioners and three ‘Experts by Experience’ (all Shaping our Lives members). The project aims to understand more about older people’s experiences of returning home to receive ongoing support and ‘assessment’...
Call for participants for a research project about the experience of applying for Personal Independence Payment
A researcher from University College London is looking to interview people about their experience claiming Personal Independence Payment in the last 5 years. The research aims to look at the experience of people with non-visible or non-apparent impairments claiming PIP, and explore ways the system could be improved. They are looking for: People with non-visible or non-apparent impairments who have applied for Personal Independence Payment (PIP) in the last 5 years (the application does not...
Hypnosis use in breast cancer care
A researcher at the University of Central Lancashire wants to hear your personal experiences of hypnosis use in breast cancer care. The project: a professional doctorate research study to carefully, and sensitively learn about the use of hypnosis in breast cancer care. What they are looking for: Women diagnosed with breast cancer who, in the last 5 years, have received hypnosis for cancer related emotional and or physical pain. Hypnotists/hypnotherapists who have used hypnosis in the UK within...
Cancer Data Driven Detection PPIE Steering Group
Cancer Research UK is developing a new programme aimed at using different types of data to understand who is most at risk of developing cancer and improve how we prevent, detect, and diagnose cancer early. During the next year, Professor Antonis Antoniou from the University of Cambridge will be developing this programme. They want to make sure that the programme will focus on what people affected by cancer, as well as the public, want and need and plan their involvement and engagement...
Join the SOCRATES network to help improve social care
SOCRATES is a group of researchers and experts by experience from three universities (the London School of Economics and Political Science, the University of Central Lancashire and King’s College London). They would like you to join the SOCRATES Network if you care about improving social care for children and or adults and: You are an expert by experience. This means people who have personal experience of social care. AND/OR you help provide and improve social care as part of your working life...
Improving Mind’s information pages on accessing peer support
Have you ever joined a local mental health support group? Or have you used an online support space – like a mental health forum, network or message board? Mind are particularly keen to hear from people from marginalised communities and global majority. Expected commitment: 1 hour chat with researcher Questionnaire (done in own time) Interviews to be scheduled between 09/10/2023 and 20/10/23. Commitment to inclusion: Mind offer the option of telephone or online call for the interview....
Bring the voice of patients to clinical trials and develop future cancer treatments
Cancer Research UK is looking for 6 people to join a new panel and support the work of the Centre for Drug Development. By working with them, you could help develop tomorrow’s cancer treatment and help them make sure everything they do is patient centred. They are looking for: Looking for people with direct experience of cancer diagnosis/treatment (now or in the past) AND/OR indirect experience as family members, carers or loved ones. Expected commitment: 18-month role but may be extended for...
Cancer Research UK for Children & Young People Insights Panel
Join a group of parents, carers, and young people to provide your views and experiences to help shape the direction of Cancer Research UK’s work and ensure it represents the needs of all children and young people affected by cancer. They are looking for: Parents, carers and young people affected by cancer Expected commitment: Until November 2025, with email consultations every other month and a 2-hour online meeting every four months (on a weekday) Closing date: Monday 2nd October 12pm If you...
Understanding what matters for people living with severe mental illness
Understanding what matters for people living with severe mental illness – a 24h approach to physical activity, sedentary behaviour and sleep. Evidence has shown that people living with severe mental illness are sedentary, struggle to engage in physical activities, and have sleep difficulties, with fatigue, mood and energy being critical determinants of these behaviours. Existing practices tend to focus on one behaviour in isolation, usually through quite rigid engagement opportunities, however...
Grants Panel Member for the Three Guineas Trust
The Three Guineas Trust’s Legal Aid Programme aims to create better access to free legal advice and representation for disabled people on benefits, debt, housing, homelessness, community care, personal liberty, and equal access to goods and services. The Trust wants to involve more voices from people closer to the front line in our grant-making. The main task for panel members will be to review proposals from projects providing legal advice and representation for disabled people and recommend...
Join the Fair Evaluation Working Group
Have you taken part in evaluation activities? Do you have thoughts on how to make these activities fairer and more inclusive? The Equitable Evaluation Collective is forming a working group to co-create a plan for making evaluation in the UK fairer and more inclusive. They are looking for people with experience of taking part in evaluation activities to join the group and would like your help! They are looking for: They want the working group to be made up of people with lived experience of...
Can you help to test an app to treat paranoia?
The Successful Treatment of Paranoia (STOP) study is the development of a smartphone app with activities designed to treat psychosis, specifically paranoia. The app can be downloaded to a smartphone or tablet and involves taking part in an activity of reading some text and leaning to respond to it in a less paranoid way. The study team are looking to see if the treatment works. They are looking for: The McPin Foundation (www.mcpin.org) together with Kings College London (KCL) are looking for...
Research mindedness in adult social care – survey and focus groups
Three practising social workers, whom all work for local authorities in the West Midlands, are currently working part time for West Midlands Association of Directors of Adult Social Services (WMADASS) on a research study. The study aims to try and understand the use of knowledge and evidence within the adult social care workforce in the West Midlands. They are looking for: They are seeking individuals and carers, who used/have used support from adult social care including carers, to complete...
Patient and Family Safety Event Recording User Research
NHS England want to interview patients, families of patients, and carers of all ages and backgrounds, who use all kinds of NHS services, to help them understand more about how people choose to give feedback on their experiences of healthcare to help the NHS learn and improve, and what their expectations of doing that would be. NHSE would also like to know if you have ever reported a patient safety concern, and to learn more about that experience, and how you think it could be improved. They...
Community Cafe event – Breaking down the stigma of mental health
Community Cafe event – Monday 9th of October 2023, from 11am-2pm The Hub at Victoria Park, hosted by University College London Would you like to chat about ethnic minority groups taking part in mental health research? They are looking for: Black and South Asian individuals over 18 Living in East London What is involved: A confidential chat about general mental health research The event will be led in-person by researchers The post Community Cafe event – Breaking down the stigma of...
Who doesn’t use hospice care and why?
Dr Nicola White and Dr Sarah Yardley are researchers at University College London. Research evidence shows that it is often people who are less financially well-off, live a long way from a hospice, are part of a minority ethnic group, or identify as being from another community that has been disadvantaged who are less likely to receive hospice care. Nicola and Sarah are developing a research study proposal to understand how hospice services can be re-designed to make them more accessible and...
Lived Experience Research Project Lead
The Lived Experience Leadership team at Mind supports staff nationally and locally to involve people with lived experience of mental health problems in programs of work and their respective organisations. The local Mind network provides local services for people with mental health problems. To do this effectively, it is essential that a deep understanding of the needs and experiences of people with mental health problems drives everything that they do and that they actively seek opportunities...
Help to review a project proposal about HIV and Depression
A team of researchers are working with the McPin Foundation on a brand new research proposal about the relationship between HIV and depression. People living with HIV are at much greater risk of depression. HIV leads to inflammation, and depressive symptoms have been linked to inflammation in the general population. This study will investigate the inflammation in young people living with HIV in South Africa and the UK, to see whether it can help identify whether young people who are at risk of...
University of Nottingham – looking for people with experience of social work
The University of Nottingham provides teaching for the social work degree and master’s degree. They are looking for people with lived experience of social work who are interested in how this experience can directly influence and benefit the learning of students studying social work as well as those involved in social work education. They are looking for: The University of Nottingham’s Centre for Social Work provides a wide range of opportunities including developing and / or delivering aspects...
Would you like to be on our lived experience newsletter editing team?
Mind is wanting to continue to change how the newsletter looks. They want more diverse content, and more ways to get involved, so readers are getting more of what they want. To do this, Mind are looking for 2 guest editors to form an editing team for 6 months, from October 2023 to March 2024. The purpose of Mind’s lived experience newsletter: Express and explore the diverse voices of lived experience of mental health problems Connect and collaborate with people with lived experience across the...
Volunteer advisory group members needed!
Healthwatch Surrey are seeking new volunteer Advisory Group members. Are you passionate about ensuring that local health and social care provision is exceptional? This voluntary role will help to ensure that Healthwatch Surrey hear as many voices as possible in delivering their mission to be a strong champion for users of health and social care services in Surrey. People do not need to have experience of this kind of role before, and Healthwatch Surrey are particularly interested to hear from...
PEGASUS Lived Experience Advisory Group (LEAG) Member
The PEGASUS Research programme aims to co-design a peer supported well-being programme to enable those of us with long-term mental health problems (such as Bipolar and Schizophrenia) who take anti-psychotic medications and so are at higher risk of struggling with our physical health (type II diabetes, high blood pressure, cholesterol, heart disease) to get better access to help and support and bring down these risks to our physical health. PEGASUS Lived Experience Advisory Group (LEAG) will...
Would you like to advise Mind on how to better support people facing poverty and mental health problems?
Mind is the nation’s leading mental health charity. Their helplines, online information and peer support services offer crucial advice for anybody experiencing a mental health problem. Working harder with and for people living in poverty is one of Mind’s current priorities. It is their goal to ensure that people with mental health problems do not get trapped in poverty. They are looking for people who have experience of facing poverty and mental health problems to help them progress this work....
Lay member vacancy on NICE committee assessing a non-invasive alternative to colonoscopy
The National Institute for Health and Care Excellence (NICE) is looking for people with experience of having an endoscopy which may include colon capsule endoscopy and understanding of the issues important to patients and unpaid carers. As a lay member, you will have this experience and understanding: through personal experience you have of treatment and care provided for you by the NHS. as a relative or unpaid carer of a patient with this experience Expected commitment from participants:...
Call for Interview Participants: Criminalising Distress
Criminalising Distress is an independent national study exploring the origins, impacts, accountability for, and alternatives to SIM (Serenity Integrated Mentoring) and similar programmes with different names based on the same model. It is being conducted by Medact, a health justice charity. Former members of the StopSIM coalition are acting as a steering committee for the project, with their input sought on every aspect of the work. The University of Greenwich has granted ethical approval for...
Long-term wounds and nursing care
Have you got a wound that has taken longer than 4 weeks to heal? Or have you had a long term wound in the last six months? Nurse researchers from Kings College London and John Hopkins University, USA are interested in talking to people living with a wound to understand their experiences of nursing care and what is important to them. We know people living with a wound see a nurse frequently to manage their wound but little is known about the impact the nurse has and what aspects of nursing care...
Seeking people to join a social work education user group at Anglia Ruskin University
Shaping Our Lives are working with Anglia Ruskin University social work school to involve people in their teaching and courses. We are looking for people who have experience of social care services, this does not need to be experience of social work services but could be another area of social care. Some of the activities will be in person at the Anglia Ruskin University campus in Peterborough. For this, you will need to be able to travel to the university in less than two hours. You may live...
Are you aged over 65 with experience of social care support?
Adult social care services use what is referred to as Assistive Technology, or Technology Enabled Care, to help support older people to remain living independently in their own homes. A University of Hertfordshire research team would like your views regarding one type of sensor technology that collects activity (lifestyle) data within a person’s home environment, designed to alert to a decline in a person’s wellbeing or an incident. The research is specifically about attitudes towards any data...
Help improve London’s transport network for everyone
Deadline 30th June 2023 This work is being carried out by Revealing Reality and Transport for London to improve London’s transport network for everyone. They hope that by speaking to a range of individuals with a variety of an accessibility needs we can improve the way everyone travels. They have a set number of spaces on the panel so have created this short questionnaire to learn a little more about you, before one of their researchers gets in touch! If you live in Greater London and...
Oxfordshire Domestic Abuse Lived Experience Advisory Group
The Oxfordshire Domestic Abuse Lived Experience Advisory Group (LEAG) is a group of survivors of domestic abuse in Oxfordshire. They work together to help shape and inform local services and policy and act as the advisory group to the county council. They are looking for: Anyone who lives in Oxfordshire over 18 who has experience domestic abuse at any point in their life. Expected commitment from participants: They meet monthly online using Teams. They also have a few face to face events a...
Macmillan Cancer Support Innovation Community
The Innovation Community, a health initiative by Macmillan Cancer Support, brings together a diverse group of people living with or affected by cancer, sharing their experiences, skills and knowledge enabling Macmillan to shape their Innovation services and products. Macmillan Cancer Support would like to work with people with lived experience of cancer (patients, carers, family and friends) to help them identify and develop new initiatives to support and improve outcomes for people living...
Local Authority Adult Social Care and women experiencing coercive control
How can Local Authority Adult Social Care better support women experiencing coercive control in domestic abusive relationships when they are undertaking safeguarding enquiries? Lucy is working on her PhD proposal. She a senior social worker with experience of working in adult safeguarding. She is also currently undertaking a pre-Doctoral Fellowship with King’s College London. It is being funded by the National Institute of Health and Care Research (NIHR). Lucy wants to consult with people with...
Healthcare Quality Improvement Partnership (HQIP) – Service User Network (SUN)
HQIP hosts a Service User Network (SUN) for people who are interested in contributing to improving the quality of healthcare services. They welcome people with lived experiences as patients and carers to join their SUN. The SUN was first established in 2009 and has had over 40 patient and carer advocates working in an advisory capacity to HQIP. They are looking for: HQIP welcomes anyone with experience of using health and care services as a patient and carer, they particularly welcome people...
We heart Big Brother
We heart Big Brother is an exciting new theatre-based project by a team of researchers at the University of Exeter and Edinburgh, and immersive theatre company Four of Swords. This summer, they are workshopping an adaption of George Orwell’s classic novel Nineteen Eighty-Four, which will explore questions of technological control, power and oppression in our contemporary world. As part of this, they are interested in the similarities between seeing, hearing and thinking things other people...
Help develop a therapy for people with psychosis to feel safer and be more socially active
Feeling Safe is a talking therapy for people who experience paranoia or have strongly held beliefs that people are trying to harm or threaten them. In previous research this approach has been shown to help people to feel safer and be more socially active. You can read more about this research here, or you can watch the following video. The study called Feeling Safer builds on this research. In this study the aim is to see if the Feeling Safer therapy can be made even better, and more widely...
Seeking participants to share their harmful experiences of NHS healthcare
A study about experiences of healthcare-related harm is being carried out by researchers from the London School of Hygiene and Tropical Medicine (LSHTM) and the University of Oxford. The purpose of this study is to better understand the experiences of those who have been harmed by NHS healthcare, to improve the services and support available to people receiving treatment and care, as well as to help healthcare providers ensure they can support and meet the needs of someone who has been harmed...
Understanding Experiences of Dementia
In this study by York University, researchers want to understand what matters to people living with dementia or memory problems. They will use what they find to create a new section for a website called Socialcaretalk.org. The website will include hundreds of extracts from filmed or audio-recorded interviews with people with direct experience of dementia. The website will help to inform people living with dementia, carers and social care professionals. Researchers would like to interview...
The EPUT Buddy Scheme (Delivered by the Essex Partnership University NHS Foundation Trust
EPUT was formed in 2017 following the merger of North Essex Partnership University NHS Foundation Trust (NEP) and South Essex Partnership University NHS Foundation Trust (SEPT). EPUT provides many community health, mental health and learning disability services across Luton and Bedfordshire, Essex and Suffolk. The EPUT Buddy Scheme is a learning opportunity for students in any discipline to learn from lived or living experience of mental health. The scheme… Seeks to empower both service users...
Accessing services in Barnet
Habitus Collective is working with the London Borough of Barnet to understand the experiences of Disabled residents, as well as residents with accessibility or mobility needs, or long-term health conditions, or those who may identify as neurodivergent. They want to know how you access council and community services, and the barriers you may face. Habitus is looking to speak to Disabled young people between the ages of 18 – 35, male residents and members from the Deaf community. This will...
Menstrual health needs for people in psychiatric inpatient settings
NSUN (the National Survivor User Network) is supporting a research project exploring experiences of how menstrual health needs are met, or not met, for people in psychiatric inpatient settings. The aim of this study is to develop understanding of people’s experiences of menstrual health whilst in psychiatric inpatient settings and co-develop guidance to address barriers. The initial phase of this research is two online questionnaires for people (18+) with lived experience of menstrual health...
Invitation to take part in interviews about housing and care
Housing is integral to people’s lives. Researchers from the London School of Economics and Political Science (LSE) university are carrying out a study looking at characteristics of mainstream housing and people’s difficulties with activities of daily living, mobility, or physical or mental health that require some help or support. Aspects of housing they will look at in this study include whether the house is owned or rented, the amount of space, how accessible the house is, how warm or free...
Join the NCCPE and help to build a more inclusive engagement ecosystem
The National Co-ordinating Centre for Public Engagement (NCCPE) is currently recruiting for several new roles, as part of their commitment to develop and support more inclusive public engagement. The roles will focus on addressing race equity and equality issues through an advisory board and action learning group pilot. All applications are now open, with a deadline to apply by Monday 17th April at 10am. They are looking for people to join the NCCPE Inclusion Advisory Group – Race Equality to...
Join a NICE advisory committee looking at tumour profiting tests for breast cancer
The National Institute for Health and Care Excellence (NICE) is looking for patients and carers with experience of tumour profiting tests for breast cancer to join an advisory committee. The committee will asses tumour profiling tests to guide chemotherapy decisions for lymph node-positive early breast cancer in order to make recommendations on their use in the NHS. NICE are looking for people with experience of either lymph node-positive early breast cancer or tumour profiling tests in lymph...
The Supporting Parent Carers in England (SPaCE) study
The Supporting Parent Carers in England (SPaCE) study, is looking to understand Parent Carers of children with Special Educational Needs and Disabilities (SEND) experiences of accessing support or treatment for their mental health. The aim of this survey is to find out how parent carers of children with Special Educational Needs and Disabilities (SEND), who are experiencing mental health problems, access support or treatment across England. By taking part, you will help researchers gather...
Does my body count? Exploring disordered eating in the trans community.
This is a fifteen minute online questionnaire about your body image, body dissatisfaction, and eating and exercising behaviours and how gender might influence these. Researchers at the University of York are looking for participants who identify as trans, non-binary, or otherwise gender non-conforming. There is a voucher available as a thank you for taking part. The study does ask questions around your body and dieting behaviours, so please do not take part if this may be triggering for you....
Join the NICE Interventional Procedure Committee
The National Institute for Health and Care Excellence are looking for someone to join their interventional procedures committee. As a lay member, you will have this experience and understanding: through personal experience you have of treatment and care provided for you by the NHS as a relative or unpaid carer of someone who has used relevant health services as an advocate, volunteer, or officer of a relevant voluntary organisation or support group. You will also have: good communication and...
Lesbian and gay adults’ experiences of completing Dialectical Behavioural Therapy (DBT)
Researchers at the University of Manchester have started recruiting for a study, which aims to explore lesbian and gay adults’ experiences of completing Dialectical Behavioural Therapy (DBT). Lesbian and gay individuals suffer from high rates of mental health difficulties, self-harm and suicidal thoughts. DBT is a therapy that reduces mental health difficulties and self-harm and suicidal thoughts. Yet, there is little research around this groups experience of DBT. In this study researchers...
Mind’s mental health, work and standard of living survey
More and more people are struggling to make ends meet, despite working. Including thousands of us with mental health problems. Mind want to hear people’s experiences so they can tell what must change to better support us. They’re putting out a survey for people who are 16+, live in England/Wales and have experience of mental health problems. You need to be in paid work and feel you’re either falling short of a decent standard of living; or can’t afford to eat, keep clean and stay warm...
Looking for people with lived experience of secure mental health service access assessments
Researchers at the University of Manchester are looking for people who have lived experience to guide their project looking into secure services access assessments. Online open days If you have undergone an access assessment for secure mental health services before, or you are family or a carer of someone who has, you could have valuable insights that will help improve our research. We welcome you to join us at one of our online open days where you can: Learn more about the research Meet the...
Cancer prevention group at King’s College London – can you help?
King’s College London are looking for people to get involved in their Cancer prevention group. The Cancer Prevention Group’s research focusses on cancer prevention and early detection. Research themes include existing screening approaches, potential early detection technologies, interventions to reduce cancer risk, psychological impact(s) of screening participation, and screening-related inequalities. We work with Patient and Public Involvement (PPI) members to help shape, update and...
Voice of the consumer discussion groups
Register by the end of March. The Royal National Institute of Blind People (RNIB) are holding some discussion groups about rehabilitation services. The groups are for people with one or more eye conditions. Date: From April 2023 Duration: 2 hours 15 minutes Where: online via MS Teams (we can call you) Topic: Rehabilitation services Glaucoma Diabetic Retinopathy Cataract Macular Degeneration Gradual Sight Loss Why not listen to what Eleanor and Karen, former participants in the Voice of the...
Can digital tools be used to support the wellbeing of everyone?
During COVID-19 lockdowns, many community organisations were unable to provide in-person support for their members and used technology to remain connected to the people they care for. Many organisations used digital tools like websites, video calls, and social media, such as Facebook, to deliver workshops, training sessions and support to people. We want to explore the role digital tools used by community organisations play in supporting the mental health and wellbeing of communities,...
Understanding Disability – help improve understanding of disability or disability-related questions in UK surveys
Help boost the use of disability/disability-related survey questions in research! Researchers are inviting Disabled people to help review disability survey questions and match them to a disability model, a group of terms that can be used together to help try to understand the concept of disability. This will help researchers and policy makers use more disability survey questions and better understand disability. The project will include four activities: an introduction to the study, the survey...
Were you a close relative or friend of someone living in a care home during the COVID-19 pandemic?
Would you be interested in taking part in a qualitative interview? This would take place over Zoom, last 60-minutes and we would give you £30 as a thank-you If you would like to discuss taking part, please email e.stubbs@lse.ac.uk. We are a team of researchers at the London School of Economics who have funding from the National Institute of Health Research (NIHR) to carry out research into how care homes in England developed and implemented their visiting policies during the COVID-19 pandemic,...
Share your thoughts about social care assessments
Shaping Our Lives and the London School of Economics (LSE) are looking for people to take part in online workshops to support the first stage of a research study about the Three Conversations (3Cs) approach to social care. Usually, when you need social care, you’ll have to go through a formal assessment process with a social or health care worker. The 3Cs model is an alternative approach to the formal assessment process. This new approach focuses on conversations to find out what really...
Do you have experience of mental health and sleep issues?
The McPin Foundation and the University of Edinburgh are teaming up to find out more about sleep problems and the link to mental health. Many people have experienced sleep problems in their lifetime, including people with mental health issues. These sleep problems can happen when our circadian rhythms (our internal body clock) are disrupted. There currently is not a lot of research to explore the relationship between mental health issues, sleep and circadian rhythms. This project will bring...
Access all labs!
When people walk into a building, they assume they will be able to open doors, walk upstairs to get to the next level, go to the toilet when needed. Unfortunately, disabled people cannot make these assumptions in many buildings, even modern ones. Buildings that house facilities that address more technical needs such as laboratories are often even more inaccessible. This lack of access means there are too few disabled scientists in labs today. Whilst approximately 20% of working age adults have...
Help decide what health and social care research gets funded
The National Institute for Health and Care Research is inviting members of the public to join one of their national and regional committees who are responsible for making funding recommendations in health and social care research. The committees play an important role in helping to deliver their mission to improve the health and wealth of the nation through research. Through funding by the Department of Health and Social Care, the NIHR enables and delivers world-leading health and social care...
Blue badge users – have you ever had an encounter with a stranger in a Blue Badge bay?
Vera Kubenz, a PhD student at the University of Birmingham, and a Blue Badge holder herself, is researching Disabled people’s experiences of interactions and encounters with other people when parking in a Blue Badge Bay. The aim of the research is to understand how these everyday encounters shape our lives as Disabled people. She is looking for people who are: Aged 18 and older Live in England Blue Badge holders And would be willing to complete a 15-20 minute online survey If you apply...
Are you a parent of a child with a learning disability?
Researchers at the University of Warwick would like to talk to you! Can you share your experiences of using and accessing general practice? They are looking for: Parents who care for a child or young person aged 21 and below and have Global Developmental Delay Learning/ intellectual disability Genetic Syndromes (e.g. Down Syndrome, Fragile X, Williams Syndrome) They would like to talk to you online or via phone, for up to 60 minutes, about your experiences of using and accessing general...
Experiences of supporting, or seeking support from, family and friends after sexual violence and abuse.
Closing date: Anticipated end of Feb 2023 About the opportunity Sarah West, a postgraduate researcher at Coventry University would like to talk to people who have experience of providing or receiving support to/from people in their personal networks, such as their friends, partners or family members (informal support). The overall aim of the project is to develop resources that can help supporters in the future. They are looking for The project is keen to hear from adults (18+) of all ages,...
Looking for people with a long-term condition that limits movement, to help with a research project about pressure ulcer prevention
The study team made up of service users, carers, personal assistants, researchers based at universities and health professionals are looking for people to help with a research project about pressure ulcer prevention. You don’t need to know anything about pressure ulcers or research to take part. They are interested in what is important to individuals and how people care for themselves (or others) day-to-day. What is the project about? They want to find out what people need to help prevent...
Looking for researchers with lived experience of psychosis
If you are a researcher with lived experience of psychosis, please consider taking part in this study. It is a qualitative study by the University of Bath investigating a psychosis social identity, or sense of belonging to the group of people who experience psychosis given evidence linking such social identities to health and wellbeing benefits. Interviews will take place on line and last approximately 60-90 mins. They are looking for people who are: Aged over 18 years Able to participate in...
Are you pregnant or given birth in the last 2 years? Do you have long-term health conditions?
A team at Birmingham University are looking to speak with women who: are at least 28 weeks pregnant or up to 2 years postpartum AND living with 2 or more long-term health conditions (physical and/or mental health conditions). This is for a study which can help improve care by telling researchers what pregnancy and birth was like for you. Interviews can be conducted remotely or in-person, depending on your preference. If you apply for this opportunity please let the organisers know that you...
Do you have one or more eye conditions?
Are you willing to share your experience of living with an eye condition(s) whether that’s in one or both eyes? The Royal National Institute of Blind People (RNIB) understand there are different levels of vision as well as blindness, so they want to hear from a range of people to understand their needs and experiences. RNIB Meet & Greet discussion groups are available to people aged 16 onwards, who live in the UK and have never used RNIB before. The groups are held over Microsoft Teams...
How are money struggles affecting your health?
We know that people on a low income, people from ethnic minority communities, those with disabilities, and those with long term health conditions are likely to be the most affected by financial hardship. Healthwatch Milton Keynes are gathering evidence to help the Bedfordshire, Luton and Milton Keynes Integrated Care System (BLMK ICS) understand the barriers that you’re facing when it comes to looking after your health, and getting the care you need. They’d like to ask a few questions about...
Recruiting participants for the LGBT+ Welfare and Assets study
Sheffield Hallam University are currently looking for volunteers who are: LGBT+ (including but not limited to lesbian, gay, bisexual and/or trans people) Aged 18+ Claiming (or have claimed in the last 8 years) welfare benefits (including child benefit)*, tax credits and/or a state pension Based in England, Scotland or Wales. If this is you, please get in touch! This is a group of researchers, funded by the Nuffield Foundation, looking to improve the experiences of LGBT+ people having to deal...