July 2015 Update

Since I last updated these pages in January, much progress has been made on the Sharing Lived Experience research project. Survey analysis has been underway in earnest, we’ve run service user and practitioner focus groups in Leeds and York, we’re collaborating with Australian partners to undertake comparative activities in Melbourne, and the findings will be presented at the Beyond ‘Them and Us’ conference in Leeds in November.

Survey Analysis:  while there’s been a great deal of work undertaken on survey analysis, this is very much an ongoing project.  With so much data from 311 respondents, it was a big task to code the information into a format so that analysis could begin, but this has now been completed and analysis is progressing well.  We’ll have some findings to report in the next few months, once we’ve discussed and checked out emerging themes in the focus groups.

Focus Groups:  have now been held in Leeds and York (July 2015) with service users and practitioners who completed the survey.  The purpose of these focus groups was to discuss a few emerging themes in a bit more depth to get a greater understanding of what people seemed to be telling us.  Clearly, sharing lived experience is a complex issue that can elicit many different opinions regarding its helpfulness, not just between different service users and practitioners, but within individuals, as the same person might feel differently at different times.  Many thanks to the people who have taken part in the focus groups so far, your contributions were invaluable.  Two more focus groups are planned in August.

Australian comparison:  a lot of work has been undertaken to set up comparative activities in Australia with Melbourne Health, an organisation that carries out similar work to Leeds and York Partnership NHS Foundation Trust.  Four focus groups will be run with consumers (service users) and clinicians (practitioners) to consider the relative importance of sharing lived experience as an issue in Australia, and how views and debates compare to those in the UK. This will be completed by the end of July 2015.

Findings:  as we’re looking at qualitative (free text) responses as well as quantitative (numerical, statistical) data, and taking this back for discussion with respondents, analysis is a complex process, and one that is still underway.  We’d like to be sure of the findings before we make any firm statements, but what we can say, from the survey, is that:

  • SLE is not a totally polarised issue.  Many practitioners and service users feel sharing lived experience is helpful, but there are also many who do not, with respondents giving many and varied reasons for their views.
  • Mental health service users appear to view most types of sharing lived experience (by practitioners) as more helpful than practitioners do, including mental health lived experience.
  • Practitioners with mental health lived experience appear to view sharing lived experience as more helpful than those without lived experience.
  • When giving concrete, real-life examples of things that practitioners have actually shared with service users in real practice situations, both practitioners and service users gave almost exclusively positive, helpful examples.  However, when responding to hypothetical questions, both practitioners and service users gave far more mixed views regarding how helpful or unhelpful sharing lived experience might be.

These are only headlines, though, and further information will be shared as it is available.  The reasons that survey respondents gave for their views were extensive and wide ranging, and gathering these together so that they can be presented coherently is the next major task.  As indicated before, both practitioners and service users are currently considering findings through involvement in focus groups, and it is likely that we will have more detailed information to share by October.

Beyond ‘Them and Us’ conference, November 2015:  I will be presenting some of the findings from this research at the Beyond ‘Them and Us’ conference in Leeds on Friday 6th November 2015.  The conference is organised by Leeds and York Partnership NHS Foundation Trust, and follows on from their Lived Experience in the Workforce conference that took place in November 2013, where we first consulted with practitioners and service users about the current research project.  Find out more about the Beyond ‘Them and Us’ conference here:  Beyond ‘Them and Us’


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