I was surprised and enraged a few years back when I heard health professionals are considered to be ‘second victims’ when a patient is seriously harmed or dies a preventable death. Second victim? Really?
Families are ‘second’ I thought, raged and tweeted. Repeatedly. Our loved ones died or experienced serious harm. We’re left (typically unsupported) to deal with devastating grief. Seeking accountability from a national health service that has an apparently Pavlovian response of shut up, shut down, fuck right off and we will throw every resource we can grubbily wring from the public purse to defeat you.
[I don’t like the word ‘victim’. It’s passive and pathological. It stamps out individuality and erases the ways in which people negotiate and pick their way across tricky or brutal terrain. The ways in which they draw on sophisticated understandings, experience and strategies in grotesque settings. Erasing vibrancy, life and love.]
On a dark, cold, wet evening last December I bumped into the support worker who was on duty the day LB died. The person who found him in the bath.
After LB died we didn’t want to see or speak to anyone involved in his ‘care’. [The staff were a mixed bag of good, mediocre and foul.] That morning the A&E consultant told us that some staff members were there and wanted to meet us. Sitting, in a state of (what?) I still don’t have the words to describe what it’s like to be in the family room you rarely (if ever) notice during the odd visit to A&E over the years with minor injuries and knocks. I can’t remember the sign on the door now but I remember the horror seeping through my veins, the prickling pain, incomprehension and fear, reinforced by gaining access to this tiny, claustrophobic space. A hair’s breadth from A&E cacophony. Metres from the bus route to town. A ten minute walk from home.
He told them it wasn’t appropriate.
My mum, with the support of family and friends stepped up to communicate with the Trust. Email exchanges archived in a tear stained folder.
We’ve since met or spoken to some staff and seen others give evidence (on paper and in person) at LB’s inquest.
Rich spoke with the senior nurse at LB’s inquest and I’ve talked with him on the phone a few times. We met with one of LB’s key nurses at the inquest (the one who said sorry to us while giving evidence.) A mate (the indomitable Fran) was in touch with a support worker a few years back. He came round one Saturday morning.
In the meantime, Katrina Percy, Sloven CEO, made repeated attempts to try and get us to meet with her. A blunt hammer approach. She never made the purpose of this meeting clear or made any effort to answer the questions we had. Other influential people also ‘encouraged’ us to meet with her. We declined.
Answers and more questions
December 2018. I saw MH before she saw me.
I dunno. I’ve struggled to try and make sense of this encounter. To organise it into letters, words, sentences, sense. Sense. Type. I know it wasn’t her fault. Being on that shift, that morning. I just want to know.
I said her name and she turned round.
She cried like I cry.
She cried. And her tears didn’t stop.
Writing this I’m kind of recoiling from the keyboard, I can’t stop crying. Fucking crying… [How is he dead? What the fuck?]
I’m so sorry.
I’m trying to generate some coherence by patching together previous, contemporary, retrospective stuff. Knowledge. It’s impossible. So many layers. So much pain, so much sadness.
Two of the things MH told me that evening:
- The day after LB died she contacted a dating agency for learning disabled people because he’d always wanted a girlfriend. That night last December was her last night working with them. After five years. She was about to return to education.
- LB’s second key nurse KD wrote us a letter after LB died but wasn’t allowed to send it to us.
In the boxes of paperwork, records, subject access and Freedom of Information documents, I remember coming across an email trail just before LB’s inquest 2015. It ended with KD asking the unit manager to tell us how sorry he was. Dated the day LB died or the day after.
Back in the day, we said we’d like the other four patients from the unit to attend LB’s funeral if they wanted to but we didn’t want any of the staff involved in his care there. The response was something along the lines of ‘these patients need to be supported by staff who know them well and understand to care for them’. [I know.]
I’m chucking the coherence towel in now to finish this post. Maybe I’ll rewrite it at some point in the future.
Here’s an interim set of thoughts which I hope are of use to someone working to improve the experiences of bereaved families when someone dies a preventable death in the NHS.
- I’m sorry our blanket refusal to engage with staff immediately after LB died caused further harm.
- We know so much more now (in terms of the ‘dark years’ of Sloven) it’s difficult to disentangle what we (others) should have done, or thought, at that time.
- The person who dies (or experiences serious harm) and their family should be the central concern. Staff (and other patients) should also be given appropriate support.
- The Trust should immediately say sorry and not prevent any individual staff member from doing so.
- It was clear in October 2015 that the Trust were cutting adrift numerous staff members as we ended up with 8 different legal counsels at LB’s inquest. This should be the focus of scrutiny by [who? NHS Improvement?] A well led Trust should not be in this position.
- The involvement of in house Trust legal teams further scrapes away humanity which should be the core ingredient of every interaction with bereaved families.
- Trusts are able to draw on seemingly unlimited resources from the public purse to defend themselves when something goes wrong. This fact may generate further disregard for families (and frontline staff) in poorly led Trusts.
- There is a gaping hole here around support, communication and humanity. And something almost ironic about the terrible harm our national health service can repeatedly wreak.