The Struggle to Stay in Relation: How the Dominance of an Ideology of Certainty Marginalises Practical Judgment and Political Action, from the Perspective of a Senior Manager in the NHS

In this thesis I explore my everyday work as a director of research in an NHS mental health trust. I use collaborative narrative autoethnography to explore episodes where research activity and evidence is contested, questioned, and sometimes causes conflict. In a health and care environment such as the NHS, it is often assumed that producing evidence of a high quality puts an end to politics and dispute. Drawing on the complexity sciences, pragmatism, and process sociology, I claim that, in addition to the scientific and bureaucratic rationality of evidence-based medicine (EBM), undertaking and using research is a complex and relational process that involves contestation and working with conflicting notions of the ‘good’. Evidence may be (more or less) clear about an area of practice, but producing research and deciding what should be done with it involves human, social, and political activities characterised by strongly held values, contested meanings, and conflicts. Through the research I have done for this thesis, I found that the production and use of clinical research in healthcare is dominated by an ideology of certainty, which manifests as EBM, and bureaucratic rationality in health service management. This ideology of certainty closes down discussion in favour of bureaucratic or scientific ends. In turn, this may lead to conflict and the breakdown of working relationships. In the course of my research for this thesis, I found that it is impossible to run clinical research without exercising practical judgement, taking political action, and being immersed in the social melee of human relating. I have argued that navigating this ongoing and dynamic process in a way that might be less harmful requires practical judgment. My research contributes to the ongoing conversation that selves are social, and therefore, even the most scientifically rational research is also social, constrained and enabled through differing ideologies, thought styles, beliefs, and values. Even research that is described as objective (for example, Randomised Controlled Trials [RCTs]) involve processes that are relational, political, and processual, by nature of the everyday activities undertaken to ensure that the research takes place. By improving our understanding of the challenges that arise from the relational nature of research and by exercising practical judgement, it may be possible to help to sustain research activity, reduce the potential for conflict and harm, and, ultimately, make the research more useful. My thesis concludes that although EBM and RCTs are essential in how the health service operates, practical judgement (phronesis) and political action are important when managing research activity. Working with conflict, ambiguity, and uncertainty is not easy. However, engaging reflexively — in particular, with prior assumptions, differences of views and beliefs, and within a community of inquiry — can increase confidence of managers and clinicians in dealing with the complex everyday work that they are involved in when it comes to research activity

Building an online community to promote communication and collaborative learning between health professionals and young people who self-harm: an exploratory study

This is the accepted version of the article, which has been published in final form at doi: 10.1111/hex.12011.Background: Online communities are known to break down barriers between supposed experts and non-experts and to promote collaborative learning and 'radical trust' among members. Young people who self-harm report difficulties in communicating with health professionals, and vice versa. Aim: We sought to bring these two groups together online to see how well they could communicate with each other about self-harm and its management, and whether they could agree on what constituted safe and relevant advice. Methods: We allocated 77 young people aged 16-25 with experience of self-harm and 18 recently/nearly qualified professionals in relevant health-care disciplines to three separate Internet discussion forums. The forums contained different proportions of professionals to young people (none; 25%; 50% respectively) to allow us to observe the effect of the professionals on online interaction. Results: The young people were keen to share their lived experience of self-harm and its management with health professionals. They engaged in lively discussion and supported one another during emotional crises. Despite registering to take part, health professionals did not actively participate in the forums. Reported barriers included lack of confidence and concerns relating to workload, private-professional boundaries, role clarity, duty of care and accountability. In their absence, the young people built a vibrant lay community, supported by site moderators. Conclusions: Health professionals may not yet be ready to engage with young people who self-harm and to exchange knowledge and experience in an anonymous online setting. Further work is needed to understand and overcome their insecurities.NIH

Dementia services for people from Black, Asian and Minority Ethnic and White-British communities: Does a primary care based model contribute to equality in service provision?

This study set out to investigate whether there were disparities in service provision for people from Black, Asian and Minority Ethnic (BAME) communities compared to White British (WB) communities within a primary care led dementia service in the UK. Data were extracted from 30 cases from three BAME (African-Caribbean, South Asian and Chinese) communities who had been referred to a dementia service between April 2016 and December 2017. We then extracted data from 30 WB cases matched for gender, age (within 5years) and General Practitioner surgery. We compared service provision for both samples around assessment, diagnosis and post-diagnostic support. The primary source of information in the BAME sample was less likely to be recorded as being the main carer and more likely to be an adult child. Cases from both samples were equally likely to have a CT scan. People from BAME communities were less likely to receive a cognitive assessment, and when they did they scored at a lower level. There was no difference between samples for the diagnoses that cases received, but BAME cases were more likely to be assessed as being low rather than medium or high risk. While cases from both samples were equally likely to receive medication, BAME cases were more likely to be seen by a psychiatrist. Significantly more people from the WB sample were recorded as using or being offered more than one form of community support. This study of a primary care-based dementia service suggests that while many areas of service provision showed no evidence of inequality, important differences remain including the time at which people present for assessment and the range of post-diagnostic services which are discussed. Further research is required to establish the likely causes of these disparities

Collaborative learning about e-health for mental health professionals and service users in a structured anonymous online short course: pilot study.

BACKGROUND: Professionals are interested in using e-health but implementation of new methods is slow. Barriers to implementation include the need for training and limited awareness or experience. Research may not always convince mental health professionals (MHPs). Adding the 'voice' of mental health service users (MHSUs) in collaborative learning may help. Involving MHSUs in face-face education can be difficult. We had previously been unable to engage MHPs in online discussion with MHSUs. Here we assessed the feasibility of short online courses involving MHSUs and MHPs. METHODS: We ran three e-health courses, comprising live interactive webcast, week's access to a discussion forum, and final live interactive webcast. We recruited MHPs via posters, newsletters, and telephone from a local NHS trust, and online via mailing lists and personal contacts from NHS trusts and higher education. We recruited MHSUs via a previous project and an independent user involvement service. Participants were presented with research evidence about e-health and asked to discuss topics using professional and lived experience. Feasibility was assessed through recruitment and attrition, participation, and researcher workloads. Outcomes of self-esteem and general self-efficacy (MHSUs), and Internet self-efficacy and confidence (MHPs) were piloted. RESULTS: Online recruiting was effective. We lost 15/41 from registration to follow-up but only 5/31 that participated in the course failed to complete follow-up. Nineteen MHPs and 12 MHSUs took part and engaged with each other in online discussion. Feedback was positive; three-quarters of MHPs indicated future plans to use the Internet for practice, and 80% of MHSUs felt the course should be continued. Running three courses for 31 participants took between 200 to 250 hours. Before and after outcome measures were completed by 26/31 that participated. MHP Internet self-efficacy and general Internet confidence, MHSU self-esteem and general self-efficacy, all seemed reliable and seemed to show some increase. CONCLUSIONS: Collaborative learning between MHSUs and MHPs in a structured online anonymous environment over a one-week course is feasible, may be more practical and less costly than face-face methods, and is worthy of further study

The transition from children's services to adult services for young people with attention deficit hyperactivity disorder : the CATCh-uS mixed-methods study

This is the final version. Available on open access from the NIHR Journals Library via the DOI in this recordADHD was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support ADHD patients who become too old for child services. This is the first in-depth study of the transition of ADHD patients from child to adult health services in the UK. Our objectives were to explore: o how many young people with ADHD are in need of services as an adult o what adult ADHD services are available o how ADHD stakeholders experience transition from child to adult services Design An interactive mixed method design was adopted with three study streams; (1) a twelve-month surveillance study with nine month follow-up to find out how many young people required ongoing medication when too old for child services (929 surveys completed by child clinicians); (2) a mapping study to identify and describe services for young adults with ADHD (2,686 respondents to online surveys for patients and health workers and Freedom of Information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholder experience of transition from child to adult services (144 interviews with 64 ADHD patients, 28 parents, 52 clinicians working in child or adult secondary health services and 14 general practitioners). Members of the public advised each stage of the study. Results Corrected for non-response and case ascertainment, the annual incidence of young people with an ongoing need for medication for ADHD lies between 270 and 599 per 100,000 people aged 17 – 19 years. Of 315 eligible cases for transition, 64% of referrals were accepted but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with ADHD across the UK; 44 were ‘dedicated’ ADHD services (defined chapter 4). Few services provide the full range of recommended provision, most focused on diagnosis and medication. They were unevenly distributed across the UK, with nearly all ‘dedicated’ services in England. Exploring stakeholders’ experiences revealed how invested they are in continuing ADHD treatment and the architecture of services impacted transition. An association between ADHD, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with ADHD, influenced investment. However, even if invested; how accessible adult services were; how patient needs fitted with the remit of the adult service; and the level of patient information available impacted transition outcomes. The results also highlighted how GPs can end up as care-coordinator during transition by default. Limitations Transition estimates were based on those who want medication, so indicate a minimum level of need. Conclusions Few of those who need ongoing support for their ADHD successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult ADHD service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of NICE recommended treatments. Future Work We a need to evaluate various models of transitional care and adult ADHD provision, as well as develop and evaluate psycho-social interventions for young people and adults with ADHD. Funding The National Institute for Health Research - Health Services and Delivery Research Programme.National Institute for Health Research (NIHR)Note the change of title. The title of the author accepted manuscript (and the original title of this record) was "Young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children's services to adult services (CATCh-uS): a mixed methods national scoping study

Proactive integrated consultation-liaison psychiatry and time spent in hospital by older medical inpatients in England (The HOME Study): a multicentre, parallel-group, randomised controlled trial

Background: Older people admitted to hospital in an emergency often have prolonged inpatient stays that worsen their outcomes, increase health-care costs, and reduce bed availability. Growing evidence suggests that the biopsychosocial complexity of their problems, which include cognitive impairment, depression, anxiety, multiple medical illnesses, and care needs resulting from functional dependency, prolongs hospital stays by making medical treatment less efficient and the planning of post-discharge care more difficult. We aimed to assess the effects of enhancing older inpatients’ care with Proactive Integrated Consultation-Liaison Psychiatry (PICLP) in The HOME Study. We have previously described the benefits of PICLP reported by patients and clinicians. In this Article, we report the effectiveness and cost-effectiveness of PICLP-enhanced care, compared with usual care alone, in reducing time in hospital. Methods: We did a parallel-group, multicentre, randomised controlled trial in 24 medical wards of three English acute general hospitals. Patients were eligible to take part if they were 65 years or older, had been admitted in an emergency, and were expected to remain in hospital for at least 2 days from the time of enrolment. Participants were randomly allocated to PICLP or usual care in a 1:1 ratio by a database software algorithm that used stratification by hospital, sex, and age, and randomly selected block sizes to ensure allocation concealment. PICLP clinicians (consultation-liaison psychiatrists supported by assisting clinicians) made proactive biopsychosocial assessments of patients’ problems, then delivered discharge-focused care as integrated members of ward teams. The primary outcome was time spent as an inpatient (during the index admission and any emergency readmissions) in the 30 days post-randomisation. Secondary outcomes were the rate of discharge from hospital for the total length of the index admission; discharge destination; the length of the index admission after random allocation truncated at 30 days; the number of emergency readmissions to hospital, the number of days spent as an inpatient in an acute general hospital, and the rate of death in the year after random allocation; the patient's experience of the hospital stay; their view on the length of the hospital stay; anxiety (Generalized Anxiety Disorder-2); depression (Patient Health Questionnaire-2); cognitive function (Montreal Cognitive Assessment-Telephone version); independent functioning (Barthel Index of Activities of Daily Living); health-related quality of life (five-level EuroQol five-dimension questionnaire); and overall quality of life. Statisticians and data collectors were masked to treatment allocation; participants and ward staff could not be. Analyses were intention-to-treat. The trial had a patient and public involvement panel and was registered with ISRTCN (ISRCTN86120296). Findings: 2744 participants (1399 [51·0%] male and 1345 [49·0%] female) were enrolled between May 2, 2018, and March 5, 2020; 1373 were allocated to PICLP and 1371 to usual care. Participants’ mean age was 82·3 years (SD 8·2) and 2565 (93·5%) participants were White. The mean time spent in hospital in the 30 days post-randomisation (analysed for 2710 [98·8%] participants) was 11·37 days (SD 8·74) with PICLP and 11·85 days (SD 9·00) with usual care; adjusted mean difference –0·45 (95% CI –1·11 to 0·21; p=0·18). The only statistically and clinically significant difference in secondary outcomes was the rate of discharge, which was 8.5% higher (rate ratio 1·09 [95% CI 1·00 to 1·17]; p=0·042) with PICLP—a difference most apparent in patients who stayed for more than 2 weeks. Compared with usual care, PICLP was estimated to be modestly cost-saving and cost-effective over 1 and 3, but not 12, months. No intervention-related serious adverse events occurred. Interpretation: This is the first randomised controlled trial of PICLP. PICLP is experienced by older medical inpatients and ward staff as enhancing medical care. It is also likely to be cost-saving in the short-term. Although the trial does not provide strong evidence that PICLP reduces time in hospital, it does support and inform its future development and evaluation. Funding: UK National Institute for Health and Care Research

Proactive integrated consultation-liaison psychiatry and time spent in hospital by older medical inpatients in England (The HOME Study): a multicentre, parallel-group, randomised controlled trial

Background: Older people admitted to hospital in an emergency often have prolonged inpatient stays that worsen their outcomes, increase health-care costs, and reduce bed availability. Growing evidence suggests that the biopsychosocial complexity of their problems, which include cognitive impairment, depression, anxiety, multiple medical illnesses, and care needs resulting from functional dependency, prolongs hospital stays by making medical treatment less efficient and the planning of post-discharge care more difficult. We aimed to assess the effects of enhancing older inpatients’ care with Proactive Integrated Consultation-Liaison Psychiatry (PICLP) in The HOME Study. We have previously described the benefits of PICLP reported by patients and clinicians. In this Article, we report the effectiveness and cost-effectiveness of PICLP-enhanced care, compared with usual care alone, in reducing time in hospital. Methods:We did a parallel-group, multicentre, randomised controlled trial in 24 medical wards of three English acute general hospitals. Patients were eligible to take part if they were 65 years or older, had been admitted in an emergency, and were expected to remain in hospital for at least 2 days from the time of enrolment. Participants were randomly allocated to PICLP or usual care in a 1:1 ratio by a database software algorithm that used stratification by hospital, sex, and age, and randomly selected block sizes to ensure allocation concealment. PICLP clinicians (consultation-liaison psychiatrists supported by assisting clinicians) made proactive biopsychosocial assessments of patients’ problems, then delivered discharge-focused care as integrated members of ward teams. The primary outcome was time spent as an inpatient (during the index admission and any emergency readmissions) in the 30 days post-randomisation. Secondary outcomes were the rate of discharge from hospital for the total length of the index admission; discharge destination; the length of the index admission after random allocation truncated at 30 days; the number of emergency readmissions to hospital, the number of days spent as an inpatient in an acute general hospital, and the rate of death in the year after random allocation; the patient's experience of the hospital stay; their view on the length of the hospital stay; anxiety (Generalized Anxiety Disorder-2); depression (Patient Health Questionnaire-2); cognitive function (Montreal Cognitive Assessment-Telephone version); independent functioning (Barthel Index of Activities of Daily Living); health-related quality of life (five-level EuroQol five-dimension questionnaire); and overall quality of life. Statisticians and data collectors were masked to treatment allocation; participants and ward staff could not be. Analyses were intention-to-treat. The trial had a patient and public involvement panel and was registered with ISRTCN (ISRCTN86120296).Findings: 2744 participants (1399 [51·0%] male and 1345 [49·0%] female) were enrolled between May 2, 2018, and March 5, 2020; 1373 were allocated to PICLP and 1371 to usual care. Participants’ mean age was 82·3 years (SD 8·2) and 2565 (93·5%) participants were White. The mean time spent in hospital in the 30 days post-randomisation (analysed for 2710 [98·8%] participants) was 11·37 days (SD 8·74) with PICLP and 11·85 days (SD 9·00) with usual care; adjusted mean difference –0·45 (95% CI –1·11 to 0·21; p=0·18). The only statistically and clinically significant difference in secondary outcomes was the rate of discharge, which was 8.5% higher (rate ratio 1·09 [95% CI 1·00 to 1·17]; p=0·042) with PICLP—a difference most apparent in patients who stayed for more than 2 weeks. Compared with usual care, PICLP was estimated to be modestly cost-saving and cost-effective over 1 and 3, but not 12, months. No intervention-related serious adverse events occurred. Interpretation:This is the first randomised controlled trial of PICLP. PICLP is experienced by older medical inpatients and ward staff as enhancing medical care. It is also likely to be cost-saving in the short-term. Although the trial does not provide strong evidence that PICLP reduces time in hospital, it does support and inform its future development and evaluation

Supportive interchanges and face-work as ‘protective talk’ in an online self-harm support forum

Within a context of concern about inappropriate advice-giving online, we examined how young people who self-harm behave online, and how professionals might engage with them. We use Discourse Analysis to focus on participant interactions (posts) from a forum’s crisis/support rooms, and highlight the prevalence of disclaimers, hedges, questions and tags in the young people’s online interactions. We use the concept of facework as a framework to help understand interactions in the forum SharpTalk. The findings demonstrate the use of a range of mitigation devices, and suggest that the young people orientate to a ‘protective’ line in their supportive interactions. These findings echo Goffman’s (1967) ‘supportive interchanges’ in that the young people’s online interactions may help to preserve face, in an emotionally complex setting, whose vulnerable members also need ‘protective’ and sensitive support. Taking this ‘line’ may enable members to create a more open and trusting context for support, and to remain in a forum which they find both helpful and challenging. In light of concerns about online support, the findings provide a new perspective on online peer-support for young people who self-harm.</jats:p