‘I want to ask you a little about your blog…’

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] :

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

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

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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.

 

 

 

21 thoughts on “‘I want to ask you a little about your blog…’

  1. Thanks Sara – Important thinking about how ‘professionals’ experience blogs or narratives as personall, emotional as well as perspectives – even if you had written in a different style these effects would be felt

  2. “Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down.”

    The entitlement in these appeals is fascinating. Learning Disability would have to have been seen as an unscrutinised space for professionals to operate in consensus. It also reflects the static nature of a lot of LD provision in terms of support and expectations. That isn’t equivalent to saying this is poor or inappropriate provision but rather there’s a model being applied which is known, predictable and replicated.

    One of the things that struck me from reading the tweets of Dr M testimony was the impression of a model being fairly rigid in her mind. This informed her behaviour and assumptions towards those in her care. That model may have been appropriate for some in her care.

    Its when the need and expectations rub against that model that conflict occurs. The statement by Dr M during her testimony that it was unusual to work with a school I feel illustrates this. I don’t think it was just the critique in your blog that caused problems but also your expectations for LB beyond the labels and that support should enable those expectations. The blog was disruptive. The behaviour towards the blog/you that was described by JC as an “irrational fear” is, in my forming hypothesis, an inability to process disruptive ideas which drives hostility.

    This hypothesis is still in a work-in-progress stage but if humble means anything, it is about embracing the disruption, creating the space to challenge models, allow dreams and expectations to be expressed and facilitating mutual learning between all parties. We are in a period where there is disruption of business as usual models of which Justice for LB is a part. I remain hopeful that better practices and models will result from this whilst being realistic that its a difficult process.

  3. Pingback: ‘I want to ask you a little about your blog…’ — mydaftlife | rosemarytrustam

  4. It proves then that if any parent has the guts to criticize the services their son or daughter is receiving, that parent runs the risk of having their loved one being treated badly. What utter cowards these professionals are.

    If the staff that work in services that are dedicated to looking after people with LD/autism are so fragile then I guess we should be using the NHS services that everybody else uses to care for our loved ones.

  5. Ditto Lisa. Ditto Pauline.

    I would describe it much more simply – as professional arrogance at best – and as individual stupidity at worse. Also as a complete refusal by some, to see our sons and daughters – and their parents as people with the same rights, needs and expectations, as themselves.

    The discomfort and or dissonance experienced by said people / professionals when challenged on this, that causes yet more damage or neglect to others, should be managed out by the people paid to do so.

    It is their refusal to accept this responsibility that blocks all improvement and permits the incompetence, cruelty and disrespect..

    If Public Sector Boards owned and behaved their paper promises; lead by example and
    performance managed their Services, the ‘ might one day – just may be better – if we all agree’ – hypothesis, would be blown sky high…in very short order.

    ….. esoteric analysis and decades of discourse, has protected the abuse, neglect and disrespect of entire families; and viewed it as just an inevitable state of affairs….

    And too many good people have been broken on this particular wheel.

  6. I can’t put the points across as eloquently as Sara’s blog or the previous comments, but at the heart of this absolutely central issue to patient safety, is where Clinician’s lack knowledge, skill, kindness and understanding. It is assumed that just because a person is a clinician – (Dr., Nurse, or allied medical professional) they will have the rounded skills of being a highly effective and a balanced and open individual.

    Some eminent clinicians have the whole package, most are highly effective and have people skills, equally some have poor clinical skills and are also not balanced and open individuals.

    If #JusticeforLB can be harnessed at a date much in the future to encourage and indeed MANDATE patient/relative positive challenge in EVERY patient clinical consultation, as part of the science of medicine (and science has developed I believe by challenge) then #JusticeforLB in addition to all it has and will have achieved will also have made a further groundbreaking step in saving countless lives where challenge has been ignored in every discipline of medicine.

    No Clinician of any standing would fail to understand that a challenge is because a relative cares about the patient and is well informed about that patient.

    Actually it is a PASSION for their patient’s welfare which is the key to being an eminent clinician.

  7. I kept wondering why everyone was referring to these Contemporaneous notes during dad’s case. It seemed important, that word ‘contemporaneous’ (I had to google it I had no idea what it meant. Not a word you use much in everyday life) What I discovered is that contemporaneous notes are the bedrock of medicine. It is expected practice that a doctor will record decisions as they are made. As John Wolfie Lish said on Twitter ‘notes keep everyone safe.’ And they do. They provide a clear plan of treatment for rhe patient-all the clinicians on the same page – and they provide a record for the doctors in case of query, The latter is rarely more important than when they are needed In an investigation or court situation after harm or death. In simple terms if it’s in the notes it happened, if not the doctor must prove that they made an error in notekeeping and not in their practice. Usually this is against the word of rhe patient or family, who are unlikely to have any kind of record at all. This blog is your contemporaneous note of Connor’s lack of treatment and care and I truly feel that this is one reason it’s used against you. The other reason I strongly believe is because, when there’s nothing factual and valid to use as a defence, character assassination is the only thing left and that is something that shocked me to the core. the awful thing I did was complain. It’s an evil, brutal and damaging tool, and the most awful this is that people who conduct these hearings alllow it, make it acceptable, It’s really not. Thank you for George for the tweets, for highlighting how you were treated, people need to know. Im sorry from the bottom of my heart you had to go through this on top of everything else you’ve been through.

  8. May I draw everyone’s attention to an opportunity to contribute (not financially!) to improving things for Sloven’s patients and families. Sloven is reviewing its Complaints Policy – yet the current draft (third version!) is still akin to the process of a Kangaroo Court and appears to have had little public input or scrutiny. When CRASH uncovered this, we were allowed a generous (?) 2 working days to comment (later extended to a week) – not even having even seen the first two drafts. We (and others) are currently pressing for a further extension.

    At https://999crash.wordpress.com/blog/ you will find a ‘Call for Action’ to make your views known to Sloven – including (as downloads) the draft complaints policy documents; CRASH’s paper on the subject (of which the Trust took no notice whatsoever). There are details of official reports, which Sloven has ignored too – going back as far as the Shipman Inquiry and including one that was specific to Sloven.

    There is also general comment on the past and draft new policies in the latest four posts on the blog – with a glimmer of hope in one. The latter is why it is so critical to press for change now.

    Most importantly, there is an email link through which you can communicate your views on the subject direct to Sloven.

    We very much doubt that Sara has had time to be involved in this exercise so we believe it would be useful if those who have been following her story could comment instead. Clearly, comments on CRASH’s blog are welcome too.

    PLEASE, PLEASE HELP TO REFORM SLOVEN!

  9. I treasure every word you have shared in your blog. As a parent of a young adult with complex disabilities, I find it empowering and inspirational.

  10. It is a dreadful shame when parents who have lovingly cared for their son/daughter reach a situation where they need help and understanding during a crisis. that they have to entrust their loved ones care into places like ATU’s.

    Tragically these places often turn out to be the opposite of what the parents expect and when they rise up and complain about the lack of professionalism from the clinicians they are crushed by the very people who are supposed to be helping and treating their son/daughter. Parents often already overcome by guilt that they could not cope are then blamed for complaining when the system treating their loved ones are proven to be dangerously unsafe.

    These practices have been going on for years and it is only now that Sara and her family have doggedly pursued these ‘professionals’ that all this stinking mess has come to light. Lets hope now that psychiatrists do not do assessments and medicate patients ‘in their head’ and start involving parents as equal partners. Clinicians see the patient for 15 minutes, parents spend a lifetime with them, and yet often their concerns are sidelined or rubbished.

    Sara although these last long years have been a cruel struggle for you, your family and friends. Connor has left his legacy, and countless parents struggling to get some sort recognition for their sons/daughters owe you and yours a tremendous debt of gratitude. Thank you

  11. Pingback: Being (in)sane in insane places… in four parts | mydaftlife

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