The aspect of the #CQCDeathsReview that I’m most involved with focuses on the experience and treatment of families and bereaved relatives. This is the area that I’m most experienced in, and most interested in. It doesn’t come without some reservations and concerns though, some of which I’ve previously blogged here. I’m lucky because I have Sara as my very own personal Jiminy Cricket.
Last night we had a conversation about parasitic bodies, groups, organisations who seek to bleed bereaved relatives dry to identify their learning (if you’re feeling generous) or maybe just for a few soundbites, ad campaigns, false reassurances (if you’re in a more cynical mood). I know that my motivations are decent, and that my heart is in the right place, but I also know that I could, if things were to go wrong (and I’m aware enough to know my comms aren’t always perfect) be experienced by families as similarly parasitic. Gah, what to do.
In an attempt to reduce this risk, and the risk that the review itself could be experienced as such, I’ve spent some time identifying available evidence to summarise for the team. I use the term evidence very broadly in this instance. It includes personal testimony as shared on social media (blogs and twitter), media coverage and stories, films and patient stories, reviews of collated experiences and I’m still on the hunt for any academic research that has looked at family experiences of NHS death investigations (please drop me a line if you know of any).
What I’ve found, perhaps not surprisingly, are a number of common themes about family experience of NHS death investigations, the complaints process and the PHSO process. The personal testimony is incredibly powerful. If a trust wanted to know how to improve their practices or approach, there are a lot of pointers out there available to them. I’m just going to touch on a few in this post.
1) Families are not always listened to
This is the number one point for me. Families report not being listened to when their loved one is alive, and not being listened to when they’ve died. In an incredibly patronising way this is often reported by investigators or those writing reports or Board minutes as ‘the family did not feel listened to‘. Wahay there, stop that right now. Please. It’s so insulting.
If I’m having a conversation with you and you don’t feel listened to, it doesn’t matter if I was filing my nails, crushing candies and listening to you at the same time because I’m an amazing multi-tasker, you didn’t feel heard, ergo you weren’t listened to. The definition of listen is as follows:
Attention; take notice of; respond to advice or request; effort.
If a family says they weren’t listened to, that’s it, it’s not about them feeling that they weren’t listened to. They were not. End of.
2) Families want answers, not revenge
Time and again families talk about their wish for three things: 1) to find out what happened to their loved one 2) to find out why what happened occurred 3) to ensure it doesn’t happen again to any other family.
I have read countless blogs, tweets and interviews and not one has mentioned the desire for revenge, for heads on sticks, to sue the NHS for millions. Families do not want to fight for answers, but they often find themselves forced into a corner by a system that requires them to become a ‘complainant’, often caricatured as vexatious and unreasonable, just to get anywhere near finding answers to their questions.
There is a sub point within this point which is that families seeking answers want details. They don’t want fuzzy softened versions of events. They don’t want to be treated like children. They don’t want to be patronised. They want to know what happened and why. Which leads me onto my next point.
3) Nothing you say can make things better, or worse
Many of us struggle to know what to say when people are bereaved. Usually a simple sorry, or acknowledgement of their pain will go a long way. Whether due to cultures of suspicion and fear, or whether to do with genuine concern about not knowing what to say to a family member of relative, people don’t say sorry. There are also a number of cases where the NHS have decided to withold information from the family, ostensibly to ‘protect them’. This is possibly illegal and definitely unhelpful. Especially if this material is then shared at a later date, with no prior warning. Stories of new information or paper work or records materialising at an inquest are not rare. If you work in an NHS trust and conduct any sort of investigation when something goes wrong, the patient if they’re alive or family members if they’re not, must know.
If someone is bereaved, reach deep inside you, find your inner human and say sorry. Many families remember years later the compassion that is shown to them by the people who get it right. Be human, please.
4) Families are kept waiting and waiting and waiting
Once someone dies families report entering into a perpetual waiting game. They wait for investigations to be completed, for disciplinary procedures, for NMC or GMC referrals, for inquests, for legal developments, for more investigations, for Police investigations, for HSE investigations and many, many more. While all of these previously unknown processes crawl along at a snails pace, they hit delays time and time and time again. Families are left in a state of limbo with few organisations or individuals, if any, meeting their own promised timescales, and reasonable (any) explanations for the delays rarely offered.
Is it any wonder that some families express a concern that the delaying is a deliberate tactic in the hope that families give up or become ill themselves?
5) Narratives of convenience
There are several narratives of convenience that you can see when you look at a number of families experiences of investigations. There is the convenience of not listening, the convenience of pneumonia, the convenience of natural causes. The convenience of emails being deleted, the convenience of records going missing. The convenience of confidentiality, the convenience of anonymity. The convenience of staff turnover, morale, or distress.
Some of these could be genuine accidents or mistakes, some of them are almost certainly convenient explanations and excuses to save addressing issues.
These are just a random selection of the themes that emerged from family experiences. There are many more and I’ll blog again if people are interested. Whether these mirror your experiences, or those of someone you know, or whether you think that they are way off the mark, please please please share your thoughts in the comments. If you felt inclined you could also share your experience with the #CQCDeathsReview team by completing the short survey (available until Sunday 14 August) which you can access via their webpage.