[2.2.19]
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.
Meeting staff
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.
What?
I said her name and she turned round.
She cried.
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?]
Those tears.
I’m so sorry.
[3.2.19]
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.
mydaftlife 
The Victims’ Code of Conduct defines “Victims” as including relatives of victims who have died as a result of criminal conduct. On that basis Sara, you are not even a secondary victim – you are a primary victim. There is no reference at all in the Code to staff employed by the perpetrators being victims.
We all earn the hard way.. I have internal memos from an NHS Trust is Surrey, where in 2015 staff were specifically told by the Chief Executive not to respond or communicate with me. . All communication must be directed to a legal team member . All she did was acknowledge receipt of letters, I got no answers at all.
I now in 2018 have a complaint about communication and record problems with an NHS Trust in Croydon . They could not be more helpful and considerate. I am now working with them to correct the flaws in their record systems.
I am still suffering the physical and mental problems of post sepsis syndrome since 2014 , as a direct result of the negligence of the Trust in Surrey and have learned the hard way about the covers ups carried out in so many NHS Trusts and others particularly by Management ..
I have also learned of the incompetent staff employed by the PHSO and their ability to cover up, not only for themselves, but also NHS trust and others who do not want to be found out.
The PHSO is of course fireproof as it is protected by Members of Parliament and legislation.,
Your grief is understandable and hopefully by putting it in print and letting others share your pain, it helps.
Stay strong.
John – know the feeling. Sloven imposed its Persistent & Unreasonable Complaints Policy on me – even before the investigation into my complaint was completed. They continued that policy even in the face of written advice from the Information Commissioners Office and the Department of Health. When the policy was lifted, I too was given a single point of contact – the Chairman & CEO’s Secretary just to keep control of me.
And this is the new, supposedly ‘enlightened’ CEO! If you have to write to a legal team member at a Trust, I may have some useful information for you. Please see my contact details at https://999crash.wordpress.com/contact-2/.
Coherence – I can recognise this need. My own past has plenty of damage physically and emotionally. You don’t wake up in intensive care on five occasions without sustaining damage or witnessing horror. I have spent many years trying to make sense of the bizarre, the cruel, the inhumanity or the senseless.
The layers are indistinguishable, obscure, entangled and sometimes exist only in emotional form. Yet that need to have it make sense and have coherent form is something I recognise.
It’s why we tell ourselves stories about who we are and when that breaks then we either sit with the pieces or hide them away only for that moment to return later through a prompt as you described your December meeting.
That doesn’t make them ‘second victims’ but they are collateral damage with their own wounds. Her tears were for you, LB and herself.
It says something about the brutal nature of corporate protectionism that it prevents human needs across the spectrum of interaction. That’s what I admire in this piece – a continuing wanting of humanity to infuse the NHS and spaces to be human.
My own feelings are that expression of that humanity wouldn’t bring any more intellectual coherence but it would allow a different less cruel space to exist.
Many echoes for us in what you write. We told Mencap and council staff that the funeral was only for family – we couldn’t imagine seeing the people who had left him that morning ever again or those who had ignored or belittled our concerns. Of course others did come – friends and neighbours who cared about Danny and us – the support worker who’d been sacked and the athletics coach who told us Danny was up for an award for his running. Daughter went to Maple Ave the day before to collect some of Danny’s photos and important things and was asked how I was; she just looked at them. The condolence cards arrived about the same time with no individual messages. Just before, a support worker who’d left to train as a social worker months before called round with his wife and sat in the garden with us talking about Danny. We heard about his visit to the Calais Jungle and the need for warm clothes for thin young men and I emptied Danny’s wardrobe.
Then came the celebratory afternoon. The good support workers didn’t come – one had a partner in labour and the other was on sick leave so probably not told- both left soon after but B did the York 10k with me and friends the following summer. Danny’s staff and managers from the Wirral came and the music tutor who had used a recording of Danny playing the piano to compose a new song. The deputy house manager we had no real problem with came with Danny’s possessions including the trainers they’d lost and the previous care manager – we avoided speaking to her but our friends who sat at her table said she didn’t seem to know Danny very well. One of the other house tenants came with his Dad and a friend from athletics came iwth his Mum and other old friends from swimming. So humanity and love won on both those occasions.
When I saw MA staff out in Morrison’s cafe and suddenly felt sick I had to leave in case one of the tenants waved at me and I’d had to have gone to speak to her. I came across the house manager with her daughter in Sainsbury’s and said hello first and had a few words about nothing.
Then the inquest statements. the young woman who had left Danny for 30 minutes ( though couldn’t remember what she was doing in that time) had written that that day she’d offered to speak to us and it was her worst day of working in that role. At the inquest 2.5 yrs later she looked very miserable but wouldn’t look at us. I asked our barrister to tell her that we had never received that message from her; she later asked via the legal teams to speak to us that day but there was no way I could have done so. Later I thought she could always have written to us if she had anything to say. It looked like unfinished business for her but she is still working at MA. The house manager showed no concern or emotion at the inquest but said she had been testing the epilepsy alarm and supporting the staff after Danny had gone to hospital in the ambulance alone. The night he was in hospital on life support I told her that staff could visit him if they wished but no one came.
As part of the CYC ‘DT Action Plan’ there is a protocol – what to do when a customer dies. It is barely one side of A4 and suggests condolences are offered preferably in person (!) and if family members want counselling they’re referred to various charities. Now we hear that LeDeR reviewers find it diffcult to approach bereaved families which is alarming – has distancing and denial usurped humanity and compassion?