This is a bold title on this blog post, and I’m sitting her before 7am, before coffee, the day after the #CQCDeathsReview published tapping my keyboard – so bear with me, hopefully the discussion and comments will add to whatever I can offer.

At the last ERG (Expert Reference Group) someone raised the concern that once the report published (yesterday) there would be a danger if the communications weren’t handled well, that people would sit back on their laurels and wait for solutions to the problem. As it stands I’m not sure the comms were great, but no-one seems to be sitting waiting for improvements, so much as completely unclear about how any improvement will actually happen – a different challenge.

What I did notice yesterday, amongst the (totally reasonable) apathy at more words, more calling for, more lessons learned, were a number of people (some I know are bereaved relatives, some I know work in the NHS, one or two are both of those things, lots I didn’t know) discussing what they could do, or asking how things could change. I’m one of those annoying cynical optimists, so while I’ve not got as much confidence as I’d like in ‘the system’ and those charged with it improving things, I do just about still have belief in my fellow humans, and I do believe that there are things we can all do to make change happen, one step or conversation at a time.

The precursor to any real progress is an acknowledgement that things are not good enough at the moment. I think this requires people to truly acknowledge it, and mean it. This isn’t about hearing the ‘problem’ and jumping straight to thinking about how to fix it, or defend it, or excuse it. This is about acknowledging the current status quo which is nothing short of utterly dire.

Acknowledgment

We know if you have a learning disability you are likely to die years before those who don’t. Not a couple of years, lots of years, twenty for women and thirteen for men. Having a learning disability should not reduce your life expectancy. There is no physical reason why it should. People with a learning disability die from preventable causes, things like constipation, problems swallowing, epilepsy and late/non diagnosed heart disease or cancer. It is nothing to do with their learning disability, and everything to do with how their health needs are ignored or misunderstood. Similarly bleak life expectancies exist for people with a mental health problem, and we’ve heard about similarly apathetic responses to people with physical disabilities.

This needs acknowledging, really acknowledging, and discussing, otherwise we risk ‘solving’ the wrong things.

Alongside the utterly dire way certain groups are treated when they’re alive, there is another acknowledgment that needs to be made, about how families are treated once someone dies in NHS care. Throughout the #CQCDeathsReview work the experience of bereaved families and carers was treated with a level of caveat I didn’t see applied to discussions about trusts or staff. The final report, despite my best efforts to edit them out, contains for too many ‘often’ or ‘sometimes’ in relation to families.

I am not suggesting that all families and carers are treated poorly by the NHS, however, despite actively seeking people who had good experiences of death investigations to take part, I was inundated by those who had not. I believe that the poor experience captured in the report, and my accompanying review, probably is representative of how families currently experience the NHS investigation process. It is not truly representative, but not because the experiences are disproportionately dire, but because many patients do not have families closely involved in their care, and when they do, many families do not have the time/energy/resources/agreement between grieving family members to get involved or push for an investigation. The utterly neglectful, inhumane and dishonest way in which families have been treated by the NHS needs acknowledging. There were some seeds of that yesterday, but if we want to improve things across the land then there needs to be a lot more.

Say sorry, be human 

Staff described in the WeNurses twitter chat that they were fearful, in some instances frightened of saying the wrong thing. They were scared of getting things wrong, or making it worse for bereaved families. So sometimes this meant that they said nothing.

It should almost be too obvious a statement to make but when someone dies their relatives are going to be sad. They are almost universally going to appreciate someone being human and saying sorry. Sorry for their loss. The words can be debated, but the sentiment is the same. One human acknowledging the other’s experience. Humanity.

Share what information you have 

Nothing in this list is rocket science and nothing really is just relevant when someone dies. It’s all relevant a lot of the time. It helps if people are upfront about what they know. Too often in healthcare information is not freely shared, even with the patient and/or their family. This is made one hundred times worse after death, where information is drip fed to families. Just turn on the tap and share what you know.

Listen and answer questions 

One of the consequences of the drip feed of information is that questions are left unanswered. Families repeatedly state that they just want to know what happened, and ensure the same thing doesn’t happen to others.

Richard Handley died in 2012 – his sister Emily tells #BBCNewsSix and #bbcnewsten why they're still fighting for justice. #CQCDeathsReview pic.twitter.com/Hwwa9HKXsU

— Michael Buchanan (@BBCMBuchanan) December 13, 2016

It’s not possible to answer questions until they are heard. That requires a level of listening that may be a big ask on already stretched staff, but the consequences of not doing it, are far greater for the family (and as the SoS was at pains to point out yesterday the public purse as the cost of investigations and litigation is high).

Be honest

If you can acknowledge the reality, listen to families and share what information you have then a lot of progress would be made. It really shouldn’t need saying, but within all that we do all need to be honest with each other. Be honest if you don’t know something. Be honest if you do. Explain why a delay occurs and forewarn people if you know it will take time. Be straight forward and don’t talk in cliches or platitudes because people experience it as being fobbed off.

Stop sending letters at the end of the week

There will be more thoughts about what more people can do, I’ve got to get my car to the garage and am somewhat lacking in inspiration right now. The most obvious practical change that people can make is to stop sending letters at the end of the week. Not my idea, it belonged to one of the family members I spoke with, the conversation that followed when I shared it on twitter yesterday suggested it was a common experience and an easy thing to change.

I know I’m missing other obvious things, I’ll add to this post or do a follow up one when inspiration strikes. All ideas or suggestions welcome. Thanks.