— Discussion and Analysis

Method: Clinical teams in 20 English mental healthcare provider organisations screened caseload lists, opting-out people whom, in their judgement, should not be approached to participate in a survey about stigma and discrimination. The reasons for each individual opted-out were requested. We assess these reasons against study recruitment criteria and investigated the impact of variations in opt-out rates on response rates and study findings.

Results: Over 4 years (2009-2012), 37% (28,592 people) of the total eligible sampling frame were excluded. Exclusions comprised three categories: clinical teams did not screen their lists within recruitment period (12,392 people: 44%); protocol-specified exclusions (8364 people: 29%); clinician opt-outs queried by research team (other reasons were given) (7836, 28%). Response rates were influenced by decision-making variations.

Conclusions: Large numbers of people were denied the opportunity to choose for themselves whether to participate or not in the Viewpoint Survey. The clinical research community, and their employing organisations, require support to better understand the value of research and best practice for research recruitment.

The study formed part of the trust-wide 'Supported Decision Making in Medication' Co-Production Project and aims to inform future recommendations in delivering against contemporary best practice, guidance and policy. A survey exploring the views and experiences of service users and prescribers on shared and supported decision-making in medication was carried out in West London NHS Trust. Questionnaires were fully co-designed and co-delivered by a group of health professionals and individuals with lived experience. There were 100 responses from service users and 35 from prescribers. There was some good practice where both parties reported good quality conversations concerning dialogic styles, collaborative process, information provided and range of choice offered. However, prescriber's perception of their practice was not always mirrored by service user feedback whose experiences often depended upon the prescriber, the time available or the part of the service. Generally, service user experience fell short of the good practice cited by clinicians though there was noticeable variability. Commitment from organizations and increasing understanding from practitioners are vital in transforming SDM from rhetoric into reality. From our findings a further challenge is to ensure that prescribers and service users have the time, information and tools to implement it consistently.

This report describes essential ingredients and considerations for effective and safe engagement and participation, and demonstrates positive changes. But it also confirms that more still needs to be done. It highlights that supporting better, safer and more effective engagement and participation with people with lived experience, their families and other support people requires shared or mutual development for all people engaged in mental health and suicide prevention, and not just those with lived experience.

This project, together with other work where the NMHC examined policies and frameworks for consumer and carer engagement and participation, demonstrates there are countless policies, procedures, strategies, plans, reports, standards and indeed laws about what needs to and should happen. There are excellent examples of good practice. Things have improved and continue to improve. But like many issues in mental health and suicide prevention, systems are patchy, siloed, highly dependent on individual endeavour and commitment, and lack uniform application. Work must continue to support better, more safe and effective engagement and participation with people with lived experience, their families and other support people. The NMHC will continue to promote safe and effective consumer and carer engagement and participation as it has done since its establishment, as a focus area and an important and ongoing part of the NMHC’s core business.