Importance:Hospital-based ophthalmology faces increasing demand for long-term monitoring of neovascular age-related macular degeneration (nAMD). Safe redistribution of routine monitoring to community clinicians is relevant to integrated community (primary)-secondary care models. Objective:To examine whether community optometrist-led monitoring of nAMD is noninferior to hospital-based monitoring for detecting disease activity requiring treatment. Design, Setting, and Participants:This multicenter, noninferiority randomized clinical trial was conducted from October 8, 2019, to January 31, 2024, at secondary centers (17 hospitals) and primary centers (60 community optometry practices) with 12-month follow-up. Statisticians were masked to patient grouping. Adults 55 years or older with quiescent AMD in at least 1 eye (and quiescent or nonneovascular disease in the other) were recruited at participating hospitals. Data analysis was performed from October 2024 to March 2025. Interventions:Participants were randomized 1:1 to monitoring sessions once every 2 months in hospitals (control) or community practices (intervention). Trained and accredited optometrists performed optical coherence tomography imaging, clinical examination, patient management, and online reporting at each visit. Main Outcomes and Measures:The primary outcome (participant level) was a binary indicator of whether a false-negative clinical management decision occurred at any visit within 12 months (missed quiescent nAMD reactivation or new fellow-eye nAMD, adjudicated by a central reading-center reference standard). The noninferiority margin was a 10-percentage point absolute risk difference. Secondary outcomes were false-positive clinical management decisions, attendance adherence, visual acuity change, harms, loss to follow-up, suspicious classifications, and confirmation visit outcomes. Results:Of 704 randomized participants, 635 (90.2%) completed at least 1 follow-up visit, including 287 at community practices (mean [SD] age, 80.6 [8.1] years; 236 [67.4%] female) and 348 at hospitals (mean [SD] age, 80.1 [8.5] years; 203 [57.3%] female). False-negative clinical management decisions occurred in 11 of 287 community participants (3.8%) vs 27 of 348 hospital participants (7.8%) (risk difference, -3.9 percentage points; 95% CI, -7.4 to -0.3 percentage points; P = .04; adjusted odds ratio, 0.51; 95% CI, 0.24-1.07; P = .08), meeting noninferiority. False-positive clinical management decisions occurred in 24 of 287 community participants (8.4%) vs 12 of 348 hospital participants (3.5%) (risk difference, 4.9 percentage points; 95% CI, 0.9-9.0 percentage points). Findings were consistent across per-protocol, cluster-adjusted, and relative risk sensitivity analyses. No adverse event-related withdrawals occurred. Conclusions and Relevance:In this randomized clinical trial, community optometrist-led monitoring of quiescent nAMD was noninferior to hospital monitoring for detecting disease activity requiring treatment. These results provide evidence for its use in integrated clinical care models. Trial Registration:ClinicalTrials.gov Identifier: NCT03893474.

Introduction Research shows cultural activities benefit older people's wellbeing, but little is known about why individuals from global majority (minority ethnic) groups engage less with the mainstream cultural sector, or how it could adapt to meet their needs and encourage engagement. The TOUS study (Tailoring cultural Offers with and for diverse older Users of Social prescribing) investigated the question: What tailoring is needed, how, when and for whom, to optimise cultural offers as part of social prescribing for older people (aged 60+) from global majority groups?Methods The TOUS study involved focused ethnographies with six cultural-sector organisations throughout the United Kingdom and 11 key informant interviews with cultural providers. A realist approach was adopted, resulting in the development of a programme theory.Results The programme theory has three pillars: (1) broker, hook, and opportunity, which support entry into cultural spaces to provide immediate benefits; (2) safety and trust, power-sharing, and meaning, which sustain engagement; and (3) transformative outcomes, including lasting relationships, confidence, and exploring identities.Conclusions With intentional engagement and relational practices, organisations can foster inclusive cultural participation and support well-being in later life.Patient or Public Contribution The TOUS study was guided by a public involvement group of six contributors (aged 60+ from global majority/minority ethnic backgrounds) who shared experiences of creative practice, and advised on data collection, analysis, model development, and dissemination. The study also involved collaborative analysis of data at case sites.

Objectives This process evaluation explores patient and healthcare professional acceptability of community-based monitoring versus hospital-based care for patients with quiescent neovascular age-related macular degeneration (QnAMD).Design Qualitative process evaluation was conducted as part of a randomised controlled trial.Setting Six hospitals and six community-based practices.Participants 25 patients and 16 healthcare professionals (ophthalmologists and optometrists). This approach helped differentiate between common issues and those specific to community-based monitoring.Intervention The Quality-Assured Follow-Up of QnAMD by non-medical practitioners trial aimed to examine whether non-medical practitioners follow-up patients with QnAMD in the community in a safe and clinically and cost-effective way. The process evaluation aimed to examine whether the intervention was acceptable by patients and professionals. The process evaluation was based on interviews which contained open-ended questions focused on patient experience and confidence in community-based care, issues concerning the practicalities of the organisation and management of the clinic, and resources including IT and digital equipment. The theory of acceptability framework was used to interpret the findings.Results Patients reported positively on the experience of receiving QnAMD services in the community and highlighted staff professionalism and clear communication. Key themes were the proximity of care provision for patients, IT interoperability and the real-world costs of running the service. Some patients randomised to the hospital showed preference for the intervention to take place in the hospital, mediated mainly by prior experience of hospital care and travel distance. The location of the clinic and transport routes affected the experience of attending appointments, with strong preference expressed for proximity to one’s home. Inaccessibility due to non-modifiable internal building structures in the community and parking in hospital eye services was reported by a small proportion of patients. Healthcare professionals reported positively about their ability to deliver QnAMD services in community settings but raised concerns about the compatibility of technological infrastructure that facilitates the sharing of optical coherence tomography image and video files. Some optometrists were also concerned about the financial sustainability of the intervention after the end of the trial due to the costs involved in the administration of QnAMD follow-up care.Conclusions The delivery of QnAMD services in the community by non-medical personnel was broadly accepted by both patients and practitioners. This implies that non-medical practitioners can follow up patients with QnAMD in the community in a safe way. Further research would be needed to establish whether similar results would be obtained during routine practice outside a research project and whether the long-term follow-up for QnAMD would be financially sustainable for independent as well as chain community optometry practices.Trial registration number NCT03893474.

QuestionIs community optometrist-led monitoring of quiescent neovascular age-related macular degeneration noninferior to hospital monitoring for identifying disease activity requiring treatment?FindingsIn this randomized clinical trial of 635 adults, false-negative clinical management decisions occurred in 3.8% in the community group and 7.8% in the hospital group for a difference of -3.9 percentage points, meeting the criterion for noninferiority.MeaningThis study's results support the use of community optometrist-led monitoring of quiescent neovascular age-related macular degeneration for detecting disease activity requiring treatment in integrated clinical care models. This randomized clinical trial examines whether community-based monitoring of neovascular age-related macular degeneration is noninferior to hospital monitoring for identifying disease activity requiring treatment. ImportanceHospital-based ophthalmology faces increasing demand for long-term monitoring of neovascular age-related macular degeneration (nAMD). Safe redistribution of routine monitoring to community clinicians is relevant to integrated community (primary)-secondary care models.ObjectiveTo examine whether community optometrist-led monitoring of nAMD is noninferior to hospital-based monitoring for detecting disease activity requiring treatment.Design, Setting, and ParticipantsThis multicenter, noninferiority randomized clinical trial was conducted from October 8, 2019, to January 31, 2024, at secondary centers (17 hospitals) and primary centers (60 community optometry practices) with 12-month follow-up. Statisticians were masked to patient grouping. Adults 55 years or older with quiescent AMD in at least 1 eye (and quiescent or nonneovascular disease in the other) were recruited at participating hospitals. Data analysis was performed from October 2024 to March 2025.InterventionsParticipants were randomized 1:1 to monitoring sessions once every 2 months in hospitals (control) or community practices (intervention). Trained and accredited optometrists performed optical coherence tomography imaging, clinical examination, patient management, and online reporting at each visit.Main Outcomes and MeasuresThe primary outcome (participant level) was a binary indicator of whether a false-negative clinical management decision occurred at any visit within 12 months (missed quiescent nAMD reactivation or new fellow-eye nAMD, adjudicated by a central reading-center reference standard). The noninferiority margin was a 10-percentage point absolute risk difference. Secondary outcomes were false-positive clinical management decisions, attendance adherence, visual acuity change, harms, loss to follow-up, suspicious classifications, and confirmation visit outcomes.ResultsOf 704 randomized participants, 635 (90.2%) completed at least 1 follow-up visit, including 287 at community practices (mean [SD] age, 80.6 [8.1] years; 236 [67.4%] female) and 348 at hospitals (mean [SD] age, 80.1 [8.5] years; 203 [57.3%] female). False-negative clinical management decisions occurred in 11 of 287 community participants (3.8%) vs 27 of 348 hospital participants (7.8%) (risk difference, -3.9 percentage points; 95% CI, -7.4 to -0.3 percentage points; P = .04; adjusted odds ratio, 0.51; 95% CI, 0.24-1.07; P = .08), meeting noninferiority. False-positive clinical management decisions occurred in 24 of 287 community participants (8.4%) vs 12 of 348 hospital participants (3.5%) (risk difference, 4.9 percentage points; 95% CI, 0.9-9.0 percentage points). Findings were consistent across per-protocol, cluster-adjusted, and relative risk sensitivity analyses. No adverse event-related withdrawals occurred.Conclusions and RelevanceIn this randomized clinical trial, community optometrist-led monitoring of quiescent nAMD was noninferior to hospital monitoring for detecting disease activity requiring treatment. These results provide evidence for its use in integrated clinical care models.Trial RegistrationClinicalTrials.gov Identifier: NCT03893474

Background: People with dementia experience discrimination and treatment that contravenes their human rights in health and social care settings. Human Rights law is complex, and real-world application can be confusing. Researchers used the FREDA (Fairness, Respect, Equality, Dignity, Autonomy) framework to provide context to focus group discussions that explored the research question: 'What are the barriers and facilitators to upholding human rights for people living with dementia in care homes?'. Method: Seven focus groups of 90 minutes were conducted. Vignettes and open questions guided discussion. Groups consisted of 7-9 people of heterogenous backgrounds including care home staff (N = 35 from 20 care homes), people with dementia (N = 5), family members of someone with dementia (N = 5), and student nurses (N = 7). Thematic analysis was completed using the Braun and Clarke (2006) inaugural framework with the 6-phase analytical process and reflexive approach. Results: Three overall themes were elicited through this study, including: 1. Personal/individual attributes including subthemes: emotional intelligence, cognitive flexibility and education & experience. 2. Organisational culture including subthemes: care home ethos, organisational flexibility, and staff morale. 3. External influences including subthemes: family and visitors, and social care funding and support. The largest barrier to supporting human rights principles reflected care home ethos, followed by organisational flexibility. The greatest facilitator was emotional intelligence, then cognitive flexibility. Conclusions: This study responds to some of the recommendations from previous research that considered Human Rights approaches to people living with dementia in care homes. It addresses the specific suggestion to identify staff attitudes and understandings that might translate to meaningful enhancements in care relating to FREDA principles of human rights. This is the first study to determine that emotional intelligence and cognitive flexibility are key influences in enabling care home staff to uphold values of human rights for people living with dementia in homes.

ABSTRACTIntroductionSocial prescribing addresses non‐medical issues (e.g., loneliness, financial worries, housing problems) affecting physical and/or mental health. It involves connecting people to external support or services, including ‘cultural offers’–events, groups and activities run within or by cultural organisations. Such offers need to be acceptable and accessible to diverse populations if forming part of a social prescription.MethodsA scoping review was conducted to identify what existing literature, conducted in the United Kingdom, tells us about tailoring cultural offers for older people (aged 60+ years) from ethnic minority groups. Relevant literature was searched for on electronic databases, through Google, via a questionnaire to cultural organisations and by contacting the study's advisory group.ResultsScreening of 906 references–59 of which were read as full documents–resulted in six sources being included in the review. Some cultural activities described within them were run in traditional cultural spaces (e.g., museums, art galleries). Others were held in community centres. Data suggested that attending with others could reduce concerns about belonging. Barriers to engagement included low energy, language, poor confidence, accessing transport and unfamiliarity with a setting and/or activities. Provision of familiar food could help make people feel welcomed.ConclusionsReviewed papers showed that consulting with target groups is important to ensure that activities are inclusive and sympathetically delivered. The review also highlighted a paucity of published research on the topic; this means that cultural providers have little evidence to draw on when developing cultural offers for older people from ethnic minority groups.

Understanding and effectively communicating population health research findings require engagement with the lived experiences of study participants, particularly when working with under-represented groups like young carers. This challenge was amplified during the COVID-19 lockdowns. To address this, we undertook a feasibility study, involving 46 young carers across 24 online creative lyric-writing workshops. Our approach combined narrative storytelling with rhythm and poetry (RAP) to co-produce creative outputs such as lyrics, aiming to engage participants with health and wellbeing research findings. Observations and interviews collected using bricolage methodology were used to capture professional and participant perspectives. The data were analysed using grounded theory. Our finding revealed that co-production and lyric-writing served as effective tools in communicating epidemiological data. We identified four key enablers in this process: connectedness, accomplishment, self-expression and societal engagement. This study underscores the potential of skills-based lyric-writing in enhancing science communication and public engagement with under-represented groups.

Background The acute hospital setting has become a key site of care for people living with dementia. People living with dementia are one of the largest populations in our hospitals, with the Department of Health and Social Care recognising that 25–50% of all acute hospital admissions are people who are also living with dementia. However, people living with dementia are a highly vulnerable group in the hospital setting and, following an acute admission, their functional abilities can deteriorate quickly and significantly. Detailed research is required to explore what constitutes ‘good care’. Objectives This study’s focus was a common, but poorly understood, aspect of everyday care for people living with dementia during an acute admission, that is continence care. We asked the following questions: what caring practices are observable when interacting with this patient group? How do ward teams respond to and manage continence needs? What informs these approaches? What are staff doing and why? Design This ethnography was informed by the symbolic interactionist research tradition, focusing on understanding how action and meaning are constructed within a setting. In-depth evidence-based analysis of everyday care enabled us to examine how ward staff responded to the continence care needs of people living with dementia and to follow the consequences of their actions. We carried out a mixed-methods systematic narrative review to refine our approach to fieldwork and analysis. Setting This ethnography was carried out for 180 days, across 12 months, in six wards in three hospitals across England and Wales that were purposefully selected to represent a range of hospital types, geographies and socioeconomic catchments. Participants In addition to general observations, 108 individuals participated directly in this study, contributing to 562 ethnographic interviews. Ten detailed case studies were also undertaken with people living with dementia. Results This study identified ‘pad cultures’ as an embedded practice on these acute wards. The routine use of continence pads among people living with dementia (regardless of continence and independence) was widespread. The use of continence pads was viewed as a precautionary strategy, the rationale being to provide safeguards, ensure containment and prevent ‘accidents’ or incontinence episodes, with an expectation that patients living with dementia not only will wear pads, but will use them. Conclusions These ‘pad cultures’ enabled the number of unscheduled interruptions to the institutionally mandated timetabled work of these wards to be reduced, but had significant impacts on people living with dementia and, in turn, wider consequences for these individuals and their identities. Ward staff described feeling abandoned with the responsibility of caring for large numbers of people living with dementia, believing that it was impossible to work in other ways to support their patient’s continence. Limitations The limitations identified included the potential for the Hawthorne effect to influence data collection. Future work In collaboration with a specialist dementia care and continence teams, the findings are informing the development of education and training at the interactional and organisational level. Study registration This study is registered as PROSPERO CRD42018119495. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research ; Vol. 10, No. 14. See the NIHR Journals Library website for further project information.

BACKGROUND:People with Huntington's disease (HD) struggle to maintain regular physical activity despite evidence of the benefits of exercise. This study aimed to evaluate the experiences of people who co-produced a walking group for people with HD. METHODS:Three people with HD, a specialist HD advisor (sHDA), two project officers from Let's Walk Cymru (LWC) and the research team co-produced and participated in a walking group for people with HD. A walking group for people with HD was supported weekly by LWC for eight weeks and fortnightly for a further 12 weeks. Semi-structured interviews were undertaken with three people with HD, a sHDA and two project LWC project officers. Interviews were transcribed verbatim and analysed using thematic analysis. FINDINGS:Interviews identified six themes across participants: "organisation and planning"; "purpose of the walks"; "benefits"; "barriers", "the group" and "the future". People with HD enjoyed participating in the walks and reported increased confidence to be more active outside the home. All participants noted challenges including apathy, diminished planning skills, social stigma and motor problems specific to HD; people with HD perceived a lack of influence in relation to co-planning and co-execution of the walking group. CONCLUSIONS:The walking group was perceived as enjoyable, beneficial, and motivational. This is the first study to report co-production of a walking group with people with HD and the findings suggest that further research is needed to adapt models of co-production for people with a long-term complex condition.

Ethnography is increasingly being used in the evaluation of quality improvement and change initiatives in healthcare settings, particularly in the form of 'focused' and 'rapid' ethnographies. This new ethnographic genre is tailored to suit narrower enquiries within clinical pathways. However, the application of ethnography to the evaluation of quality improvement is not straightforward or free from reductionist bias, particularly in hospital settings where interventions take place during a limited period of time and instigate change in busy and sensitive settings. This paper discusses problems and emergent solutions involved in conducting an ethnographic process evaluation of co-design projects in lung cancer and intensive care unit services in two hospitals in England. The mixed-methods ethnographic evaluation consisted of observations of the co-design process and triangulation of findings with interviews, questionnaires, participant reflective diaries and service improvement logs. Limitations of observational time and distance from 'the field' were overcome by making most of the pre- and post-event observational periods, situating quality improvement within the wider context of clinical practice, achieving attunement with local clinical cultures and engaging participants in collaboratively guiding observational and interview design. This approach led to a focused ethnographic evaluation that accommodated ethnographic principles to obtain rich insights into quality improvement processes despite the limitations of short-timeframes and the hospital setting.

This paper discusses the link between community music improvisation and the integration of refugees, asylum seekers and local residents, and proposes a new way of thinking about priority-setting in refugee integration and rehabilitation support schemes. Drawing on observations and interviews with an integrated music group in Wales, we explore the effect of participating in structured musical activities and improvisation in weekly meetings, as well as at public performances in community arts events. We observed that embedding improvisation led to four outcomes. It (i) encouraged individual unscripted performances, instilling confidence in solo performance, (ii) gave individuals who had experienced displacement and marginalisation a chance to lead in a safe, performative space, (iii) gave other participants a chance to follow and accompany this piece instrumentally or vocally, drawing on their own cultural traditions and thus creating innovative cross-cultural pieces; and (iv) provided participants and audience members with a unique and unrepeated, uplifting experience that triggered their imaginations, and prompted questions and further discussion between participants. These findings suggest that the combination of structured musical activity and improvisation may help to foster a sense of wellbeing and social inclusion, shift power dynamics, and create a space for cross-cultural dialogue. These unique outcomes highlight how music can create a community of people from seemingly completely different locations or situations. Furthermore, the well-established Welsh choral traditions and local community arts provided a receptive environment for this diverse group of performers. Therefore, it was not just the musical activities but their connection to the wider local community arts scene that delivered these individual, collective and wider societal benefits.

Action research has been characterised as systematic enquiry into practice, undertaken by those involved, with the aim changing and improving that practice: an approach designed to have impact. Whilst much has been written about the process and practice of researching', historically impact' has been somewhat taken for granted. In recent years, however, the impact of all forms of research has become the focus of interest with many funding bodies now demanding that researchers not only articulate the prospective impact of their work, but what kinds of evidence will be proffered to demonstrate that impact. This has raised questions for action researchers, not about whether their work has an impact, but what form that impact takes, how it is recognised and by whom. This paper focuses on difficulties researchers find in both articulating the impact of participatory research and demonstrating links between such forms of research and impact. We draw on discussions about the notion of impact with authors that have self-reported and published their work as participatory. These discussions revealed that not only were there difficulties in clarifying the participatory dimension of their research but that whilst authors were able to discuss particular impacts of their work, articulating and evidencing that impact was often absent from their published papers. This paper offers insights into some of issues and barriers those who undertake participatory research face in explicating, for the external audience (and indeed sometimes for ourselves), the impact of this action-based form of enquiry.

Aims and objectivesTo discuss the risks that heteronormative assumptions play in prostate cancer care and how these may be addressed. BackgroundThere is international evidence to support the case that LGBT patients with cancer are less likely to report poor health or self-disclose sexual orientation. Gender-specific cancers, such as prostate cancer, require particular interventions in terms of supportive care. These may include advice about side-effect management (such as incontinence or erectile dysfunction), treatment choices and social and emotional issues. In this paper, we discuss and analyse the heteronormative assumptions and culture that exist around this cancer. We argue that this situation may act as a barrier to effective supportive care for all Lesbian women, Gay, Transgender and Bisexual patients, in this case men who have sex with men.[Correction added on 21 September 2017, after first online publication: The first sentence of the Background section has been revised for clarity in this current version.] DesignTheoretical exploration of heteronormativity considered against the clinical context of prostate cancer. MethodsIdentification and inclusion of relevant international evidence combined with clinical discussion. ResultsThis paper posits a number of questions around heteronormativity in relation to prostate cancer information provision, supportive care and male sexuality. While assumptions regarding sexual orientation should be avoided in clinical encounters, this may be difficult when heteronormative assumptions dominate. Existing research supports the assertion that patient experience, including the needs of LGBT patients, should be central to service developments. ConclusionAssumptions about sexual orientation should be avoided and recorded accurately and sensitively, and relational models of care should be promoted at the start of cancer treatment in an appropriate manner. These may assist in reducing the risks of embarrassment or offence to nonheterosexual patients, or to professionals who may adopt heteronormative assumptions. Relevance to clinical practiceHaving an awareness of the risks of making heteronormative assumptions in clinical practice will be useful for all health professionals engaged in prostate cancer care. This awareness can prevent embarrassment or upset for patients and ensure a more equitable provision of service, including men with prostate cancer who do not identify as heterosexual.

Purpose - The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes.Design/methodology/approach - A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts.Findings - Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became "experts by experience" through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes.Research limitations/implications - The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design.Practical implications - Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement.Social implications - Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers.Originality/value - Analysis of the role patients and carers in implementation and improvement.

Purpose: – The potential for including patients in implementation processes has received limited attention in the literature. The purpose of this paper is to explore the different roles adopted by 63 patients that emerged during and after four participatory quality improvement interventions, and the nature of their impact upon implementation processes and outcomes. Design/methodology/approach: – A cross-case ethnographic comparison of Experience-based Co-design in two clinical pathways in two UK NHS Trusts. Findings: – Two key themes emerge from the data. First, the authors found a range of different roles adopted by patients within and across the four projects; some were happy to share their experiences, others also helped to identify improvement priorities alongside staff whilst others were also involved in developing potential solutions with the staff who had cared for them. A few participants also helped implement those solutions and became “experts by experience” through engaging in the whole co-design process. Second, in terms of the impact of patient engagement with the co-design process whilst the changes championed by patients and carers were often small scale, as co-designers patients provided innovative ideas and solutions. Through their involvement and contributions they also acted as catalysts for broader change in the attitudes of staff by providing a motivation for wider organisational and attitudinal changes. Research limitations/implications: – The research was conducted in two clinical pathways in two NHS trusts. However, the findings complement and add to the growing body of knowledge on experience based co-design. Practical implications: – Patient engagement is likely to require support and facilitation to ensure that patients can play a meaningful role as partners and co-designers in service improvement and implementation. Different roles suited particular individuals, with participants stepping in and out of the co-design process at various stages as suited their needs, capacities and (albeit sometimes perceptions re) skills. In this context, facilitation needs to be sensitive to individual needs and flexible to support involvement. Social implications: – Patients and carers can play active roles in service improvement, particularly where the approach facilitate active engagement as co-designers. Originality/value: – Analysis of the role patients and carers in implementation and improvement.