I can’t believe that I’m writing this blog post. I can’t believe that anything I’m about to say should need saying, so I’m going to try and keep it short. I’ve written a couple of previous blogs about my experience of the #CQCDeathsReview and my last ended with a section that shared the header of this post ‘actually bringing about change’.

It’s now six weeks since the CQC Deaths Review was published and I’m not sure that we’re any closer to bringing about change. In fact my hunch is that we may have done an even greater disservice than nothing, we may have kidded people into thinking producing the report actually meant something. You know that sigh of relief when a report is published or an email is sent, in this case that’s a false sense of relief though, the report was meant to capture the state of play, so we knew where efforts should be placed to improve things, the report in its own right won’t change anything. It was the end of Phase 1, not the end of the review.

When I agreed to be involved with the review it was because I felt that families needed their experiences to be heard. Not to be sanitised, or diminished with the constant yes but’s…. yes but what about staff morale… yes but not everyone has a bad experience… yes but that was a tragedy and hundreds/thousands of people are treated every day without this happening. I made a promise to myself that I wouldn’t get sucked into the NHS way of being, this made for some uncomfortable looks and silences at times, but I was determined to ensure the apathy didn’t win out. To all intents and purposes I felt like I did a fairly good job too.

I’m currently sitting with an unease like a pebble in my stomach, a volcanic pebble of doubt that occasionally erupts as I imagine what is going on. I have to imagine, because despite one phone call with one member of the team, nothing else is clear. The plan was that January to March would be a period of intense activity, one where the bodies outside of CQC, would start working on actually doing something and actually bringing about change, with families as active partners.

Maybe they have. Maybe they’ve fixed it all already and ‘the solutions’ will be rolled out at the final Expert Reference Group meeting next week – if it’s happening, a week to go, no confirmed times and no agenda. I can’t help like I’m feeling around in the dark, while families who shared their most intimate experiences with me get in touch to ask what is happening, and I have to admit that I don’t know.

When I’m calmer I’ll share a few more reflections on communications and ERGs and how input is gathered into all things patient safety. For now I’m just shining a light on the irony of the situation, the overwhelming experience of all bereaved families was that NHS reputation came before care for them, that they weren’t included or involved, that communication wasn’t open or transparent or timely. Yup, I hear ya.

I’m sure there are a bunch of genuinely well-meaning civil servants in the Department of Health, in NHS Improvement or NHS England fervently scratching their heads, drafting terms of reference for task and finish groups or workstreams or whatever other bureaucratic mind-numbing structures will be put in place. Thing is, they’re meant to be doing that with families, and until they learn to actually involve families from the start, openly and transparently, then what hope is there that NHS Trusts will change their behaviour?

Perhaps the Director of Patient Experience at NHS England completely coincidentally tweeted this today, completely without context, like the CQC report didn’t publish 6 weeks ago addressing this very issue?

Interested in any good practice or guidance on involving families & carers in investigations of deaths

— Neil Churchill (@neilgchurchill) January 31, 2017

I hope more than anything that people who  have a role that apparently represents patients, whether they’re Patient Experience Directors or Patient Leaders or Heads of Experience, wouldn’t actually get involved in something as important as this, without a) talking to the people who had already been involved or b) a complete and utter solid commitment to 100% coproduction – and I mean doing it, not just saying it. If the NHS was awash with good practice in this area the CQC report would not have painted such a bleak picture. I hope as much time and energy and effort will go into addressing families experience, as searching for the elusive, non-transferable, easy to put into words but not so easy in deeds, good practice examples.

Maybe my ego or volcanic pebble of doubt is out of control. Maybe I’m too cynical. Maybe scores of families have been contacted. Maybe nothing has happened without involving families. Maybe the DH, NHSE and NHSI have been working closely with CQC to identify resources (because yes families require remuneration for their time) to engage with families and they have a brilliant long list of ways to do so and there are months to do the work because they’d not have wasted one of the three months set aside without speaking to families. I hope so. If someone could just update those of us who were involved with the review we could share contacts and information and people who might like to help.

Whatever people thought about the quality of the recommendations of the report, they all required families and carers to be embedded within the actions and responses…. that won’t happen by accident. I know what the National Quality Board is meeting tomorrow to discuss the response to the CQC Deaths Review – it is full of the great and the good, and not one lay member or family representative. So I’m struggling to see how they are going to ensure families are heard, but I look forward to hearing about it, if anyone in any communications team anywhere would care to update us?

I’ll just leave this here.