This blog has again loomed large. It did at LB’s inquest and again this week at the ongoing GMC tribunal. Dr Murphy’s respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I’m not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient’s mother).

How social media ‘feedback’ is ‘used’ by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.

When I started writing the blog back in May 2011 ‘online patient feedback’ was not a twinkle in my eye and possibly wasn’t even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn’t expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.

This week the blog questions unfolded like this [RP is Dr Murphy’s barrister] :

This was ground already thrashed out during LB’s inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].

A different view was presented by the Band 6 nurse during his evidence:

I was told a few years ago that a STATT staff member was warned about LB’s imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn’t know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.

This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB’s potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said ‘an irrational fear of the blog’.

Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.

I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I’d been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer.  This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.

I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and ‘polite’ account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.

I’m baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today… I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I’m deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy’s responsibility to talk to me about LB’s treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?

I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when ‘transgressional’ activity takes place.

There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as ‘anecdote’ differed here. Lowly families aren’t allowed the defence of ‘I did it in my head’ like Dr Murphy has used this week at the tribunal but I had written it down.

There is much to think about, discuss and chew over here in some ways. In other ways there ain’t. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.