The phrase "lessons learnt" has come to represent everything that I think is wrong with responses to serious incidents in Health and Social Care. Whenever I hear this phrase, an internal rage rises and I become desperate for a change in the culture of responding to serious incidents in which patients are harmed.
When my brother died suddenly and needlessly I vividly recall saying to my family:
"We're going to do everything humanly possible to stop this happening to anyone else with Learning Disabilities...I don't want his life to have been wasted for nothing...I want him to be the last".
How naive I was. How exhausting this journey has become.
I've since realised that 1200 people with Learning Disabilities die every year in England alone with symptoms amenable to treatment. So my brilliant brother wasn't the first and certainly won't be the last...I'm honestly left feeling that he's just another body on a pile that everyone can see but nobody cares quite enough to do anything about.
The evidence is staring us in the face yet we're clearly not "learning lessons".
The “Learning Lessons” ship has sailed
Surely it's time to admit that the "learning lessons" ship has sailed? In fact the "learning lessons" ship has sunk and everyone on it has drowned. Senior people from involved organisations attend numerous meetings and compile reports whist nothing changes. My family is clinging desperately to a life raft that the involved agencies seem more intent to sink every time we dare to ask a question.
"Learning lessons" stinks of slow paced inactivity. Serious incidents are investigated behind closed doors and families are left with no support, held at arm's length waiting desperately for something constructive to come from their nightmare. Months then years pass and nothing is disseminated, nothing changes and more people die whilst we await the Holy Grail list of "lessons learnt". The Serious Case Review overview report is professed to be the key that will unlock the necessary changes...except it won't! We only have to look at the disappointing response to the Winterbourne Serious Case Review to predict that my brother's report will likely lead to a lot of talk and very little action.
Serious Case Reviews feel to me like an academic exercise of going-through-the-motions. Investigating because it's mandated, whilst each captain from the "learning lessons" ship desperately hopes that their organisation comes out smelling like roses. Terrified of litigation, fearful of media attention; capitalising on any relevant legislation, policy and protocol to maximise secrecy, delaying dissemination for as long as humanly possible.
If only this much time, effort and adherence to legislation, policy and protocol was embedded in practice, I can't help but feel my brother and many other people with Learning Disabilities would still be alive!
It strikes me that there is actually a hell of a lot to learn yet the obsession with "learning lessons" inadvertently maintains the status quo.
It took months following the death of Connor Sparrowhawk for the investigators to “learn” that vulnerable people with epilepsy shouldn’t be left alone in the bath. In my mind, this is an insult to Connor’s memory, to his family, to his friends and to the other vulnerable patients accessing services.
I wonder if Serious Case Reviews and investigations, as they stand, actually do more harm than good because it appears as though something is being done. Months pass and meanwhile the involved agencies provide the same 'care' to vulnerable people, poor practice continues, more people suffer, more people die and more families have their lives turned upside down.
A vision for a better future
Haven't we reached the point that the "lessons" are there and we actually need to get out there and do something differently? Isn't it time for radical change? Isn't it time to translate these goddamn 'lessons learnt" into significant, meaningful and tangible changes in practice?
When patients are seriously harmed we need to sit up fast and take action immediately. Immediate, honest analysis, immediate changes and wide dissemination so that improvements are implemented nationally, for the benefit of all. Immediate, immediate, immediate...not months and years of navel gazing with no action and more bodies on the pile!
We need swat teams, going into services fast to help them pull their socks up. To understand the problems, make the necessary changes and stop it happening again! Surely this would be better for patients, staff and families? Not a ‘blame’ culture but a ‘change’ culture.
The changes needed in responses to serious incidents aren't actually all that radical. But they do require a willingness to do something differently, which is possibly where it all falls down.
What will it take?
It seems clear to me that there needs to be a Serious Case Review into Serious Case Reviews. Let's analyse and identify what works well and where Serious Case Reviews fall short. Let’s put something else in place that is proportionate to the situations warranting investigation. Surely this would enable the development of a system that works, a system we can be proud of and a system that doesn’t stink of indifference and kick families in the face when they have already lost so much.
Losing my brother has been inexplicably horrendous. Yet our experience as a family since his death, through our interactions with the Serious Case Review panel and “the system” has added insult to injury. Well meaning professionals unquestioningly adhering to an inadequate system and unwittingly becoming part of the problem.
Is it too much to ask?
Is it too much to ask that NHS and Social Care services should act with integrity and be worthy of pride, even when the worst possible thing has happened? Despite the enormity of my loss, I do think this could be a reality...but we've got to want to change and we've got to be willing to invest some effort into making it happen. (And God forbid, we might just have to be willing to listen to families!)
Sticking our heads above the parapet
Maybe I’m a naive grieving sister who can’t see the wood for the trees...or perhaps I am an expert by experience (the worst possible experience) with something important to say.
What I have learnt is that there is a pervasive culture in health and social care that prefers families to be seen and not heard. However, the inspirational #107days campaign, created by volunteers and fuelled by another family’s nightmare, shows there are enough people out there who care about the health and rights of people with Learning Disabilities.
When will the people with power join us so that grieving families can confidently accept the invitation to “trust the system” instead of having to knock it into shape ourselves?
NHS England, Department of Health, CQC, Politicians, Professionals...I'm looking at you and I'm unashamedly begging. What are you actually going to do and when are you going to do it?