The CQC Deaths Review publishes today. You can download and read the report here. It makes for a gut churning read. The headline message is that the NHS is failing to identify deaths that need investigating, failing to investigate properly (when investigations happen) and failing to learn lessons, improve care or prevent future deaths.
It is utterly grim.
If you have a learning disability, or a mental health problem then it’s even grimmer. Many trusts didn’t even know that you existed. If you have no family actively involved in your life, then there is every chance that it’s even grimmer still.
The infuriating thing is that this report confirms what many people have been saying for years. This is not new news. We know people with a learning disability or a mental health problem die prematurely. Not a couple years early, but decades early. We have known for many years. We know that families have to fight tooth and nail to be taken seriously, to be heard and to get anything close to accountability. Some have been campaigning for decades.
So, what was the point of the review then?
I have been musing this a lot myself over the past couple of weeks. I agreed to work on the review as a Special Advisor (don’t be fooled by the grand sounding title, the key is in the word advisor – you offer input, the team choose whether to follow it). I’ll blog about the experience another time, but my ambition was to ensure that family experiences were central to the review process. That their voices were actually heard. That their experiences were considered. That engagement of families was not just a tick box exercise. It will be for families to judge whether I succeeded in that.
I’m sure many will read this report and quite rightly feel frustrated that it’s just more words. I share that frustration. Firstly, I feel that a report can never do justice to the information that was collected and to the experiences shared. Secondly, I feel that the report was in someway constrained by something/someone to that which is readily identifiable and to which agreement to address it can be reached (I’m really not sure whether it was process/structure/system).
I don’t know how confident I am that this report, like the many, many others before it, will lead to change. I think the action required now, what follows this report, will be key to that. The CQC team have laid out the scale of neglect in the system, this isn’t something that the NHS can look away from and hope it will disappear. It won’t.
We need an acknowledgment of how dire the status quo is. An acknowledgement of the extraordinary efforts families have had to go to in order to get any sort of answers. We need a commitment to improve things, a whole hearted commitment. I believe we need mandatory investigations for groups who are currently dying decades before their peers – people with a learning disability and/or mental health problems. This review makes that need even clearer, for too long the government response has been half baked. It needs more.
This is not a question of resources. This is not a matter of staff morale. This is not about blame.
It is about people, being valued, while they’re alive and when they die. It is about human rights. It is about working together to come up with answers and identify learning. It is about the need to save lives.
This matters to all of us. It’s not about other people. It’s about your mother or father, sister or brother, cousin or aunt. It is about your friends, colleagues and neighbours. Despite the rather ironic title to this report, currently there is no learning, no candour and no accountability.
This has to change.
You can download a report of the Family Listening Day that Inquest hosted from their website here. This report captures what families told CQC about their experiences of current NHS death investigation processes.
You can download my review of Family involvement in, and experience of, death investigations by the NHS.
I wrote this review to collect together family experiences in one place. It includes personal testimony and conversations with family members, alongside evidence collected from media coverage, published reports and PHSO rulings.
The picture painted is of a chaotic and confusing process, with little concern or care for bereaved relatives, and little focus on answering families questions about what happened in the care of their loved one.
When families experience compassion, honesty and humanity it helps. However, bereaved relatives are frequently dismissed and their concerns are deflected or diminished. When investigations do take place they are often of a poor quality, with conclusions that do not relate to the evidence collected, errors and omissions and little, if any, specialist input.
Family members are rarely engaged in the investigation process in an appropriate way, and are subjected to multiple investigations from different agencies. Families are expected to cope with little help, coordination or support.
It is clear that there is a huge gulf between rhetoric and reality when someone dies in NHS care. This needs to change.