A couple days ago I posted How can we improve things #CQCDeathsReview and wandered off twitter and email for 36 hours. It’s been a roller coaster week, bizarre in many ways, trying to keep on top of the media coverage since the review published, wanting to engage with people who offered their perspectives, and reeling at the blanket complaining in my stream that a report wont change anything (urgh, yes and I’m delighted to see so many academics were sharing that view). I am not clear on what the next steps will be, I was underwhelmed by the SoS in the House (I did note how many seemed to think it was progress) but for me the words just didn’t all add up – families should be central to death investigations (but only mentioned once in 1365 words in his initial response to the House), lots of focus on staff and systems (obviously important) but an almost school boy glee at the idea of being world class in this stuff (on the day a report is published that says we’re shamefully getting it wrong at great cost to bereaved families). I’m desperately trying to stay positive but will be able to relax when some concrete next steps are shared, that have bereaved families and relatives right at the centre of them. Until then….
Well until then I’m intending to keep talking about the review and the implications of it, with a focus on what easy things can change (if there are any). So here’s the second post on that subject.
Denial, denigrating and dismissing reality
My last post started with a focus on acknowledgment, of needing to actually hear what people have told us and acknowledge their reality. Admitting and accepting that things need to change, really need to change, if we want to stand any hope of identifying and investigating deaths well, with a lens on identifying learning and improving care.
Acknowledgement of the reality doesn’t cost anything. Its value is priceless.
— Clare Gerada (@clarercgp) December 13, 2016
Clare Gerada, former president of the Royal College of GPs presents a truly brilliant case example of how to get it wrong, while also presenting how far things have to go. On a day when family members shared their experience she tossed it aside as ‘sad’ and labelled family experience of poor care as ‘denigrating’ the NHS. Clearly the reality expressed by families and the CQC doesn’t fit with an NHS staff are angels narrative.
Setting families up in such a combative role is where a significant part of the problem lies.
Family members rarely seek to complain, yet the system forces them to do so to try and access information or answers. (Family experience review, page 6)
Gerada should know better, a simplistic dichotomy, a throwaway ‘sad’ and a labelling of blame and defensiveness. Clearly there is so far still to go.
— Deb Hazeldine (@DebHazeldine) December 13, 2016
So what can we do?
Throw away the bin bags, or just use them for the bin. I thought bin bags as a tool for sharing belongings had been consigned to the scrap heap, but seemingly not.
— ✨✨Celebrating Adam✨✨ (@4AdsthePoet) December 15, 2016
It’s so easy. Just stop doing it. Get some boxes, or ask the family to bring in a bag, or buy some bubble wrap and brown paper. Whatever you need done, but stop using bin bags for personal belongings (this stands for children and young people being moved around in care, and people dying in social care where there’s a desperately condensed period for action because no-one wants a bed empty). This must be one of the easiest problems to fix.
This comes up time and time again, stop saying you’re going to learn lessons and just learn them. If the NHS put as much time and effort into doing things as it does communicating about the intent to do things we might make more progress.
@GeorgeJulian I've lost count of the number of time I've heard the phrase "learning lessons" today. It's excruciating!
— Sis (@wake_the_world) December 13, 2016
I tend to steer clear of the c word, because I’m not sure it’s the sort of thing that can really be taught, and I know from experience it’s very hard to dig deep and be compassionate when others aren’t compassionate with you. So asking nurses and health care assistants to be more compassionate when nothing about their own work environment models compassion, is hard (and probably pointless).
I also steer clear of compassion usually because it’s another one of those nebulous things that has the snake oilers rubbing their hands in glee. Ohhh we can sell a cash strapped NHS a workshop in compassion so they can tick a box and we can get paid. Each time I see someone complain that the NHS can not improve because there’s no money I want to scream back at them to go and pour over their local trust’s accounts – there is a LOT of money in the NHS, wasted on being seen to do something, not really getting to grips with the basics (see also IT firms and their miracle solutions… that clearly ain’t working).
Anyhow, I digress. Yesterday it was a year since Mogs (my cat) was put to sleep. He was fine one day and dead by the end of the next. A very sudden and brutal removal from my life, one a year later that my brain still struggles to compute at times. Grief and loss (even for a cat) is like that, it takes time. Time for your brain to adjust and time to get a handle on all the emotions that come with it. I can not truly imagine what it would be like if that had been my mum, or a son or daughter, or a lifelong friend. Here one day and gone the next. I do not know where, or how, families in that situation find the strength, resolve and resilience to enter into what for so many becomes a never ending fight for answers.
What I do believe is that it doesn’t need to be like that. It could be much better. I also believe that one simple compassionate act (even if you know it’s done for all, and even if you cynically think it may be done to ensure repeat business – as I’ve had suggested to me), even so, it makes a difference. I still have that card. It arrived a couple days after Mogs was put to sleep. It probably cost all of a quid, and it helped. Sometimes it’s the simple things.
— GeorgeJulian (@GeorgeJulian) December 18, 2015
Harness the experience of families to make change
Jeremy Hunt announced in Parliament this week in response to the #CQCDeathsReview that each NHS trust board should have a Director of Patient Safety from April 2017. This was met with a range of responses, including that they should have anyway, what’s the point it’s just the Director of Nursing role, and queries about how another responsibility for board members will bring about change.
Rhiannon, who spoke so eloquently about her family’s experience on the BBC this week and her daughter Kate’s death, made a suggestion for how that role could really be something useful.
Should probably be a bereaved parent who's survived the bullshit onslaught to date and can see past the lies and who has strong media links https://t.co/6GaEw5EaGJ
— Rhiannon (@rhiannonwrites) December 13, 2016
Imagine if each of the trusts around the country who have embroiled families in long battles for answers (and yes I honestly believe that’s probably all/most of them) actually stopped and said sorry. They apologised and meant it and worked with those family members to improve things. It goes without saying that they should be recompensed for their time and expertise, and not with some pissy £150 day rate from NHS England, but an average of the salaries of everyone else around the table. Ignoring details, how powerful could that be, how much change could really come from such an approach?
Rhiannon isn’t alone either, Joanne, whose baby Jasmine died four years ago, was also expressing her wish to work in this area.
— Mothers Instinct (@Mothers_Inst_UK) December 15, 2016
It is about time that we acknowledged the reality these families face, and engage with them at any and every opportunity they offer. This needs to happen across the country. It’s not enough for the SoS to listen and support some family members, and ignore or simply disagree with others (while still name checking them in Parliament).
We need a new future. One where families are heard, really heard. Where they’re central to investigations and central to care. Where they aren’t accused of denigrating anything, when simply trying to get answers about what happened.
No-one gets this ‘right’ at the moment, but we can all do our bit to make it better.