We start out in life believing that wrongdoing will be punished and evil destroyed. We know good from bad and we know that if a bad thing happens there are people who will come and deal with it and make everything alright again.
As we grow older that knowledge gets dented. It starts with small deceptions, cruelties which go unpunished and in seeing the cunning and malicious thrive. But still we tell ourselves that if a really awful thing happened there would be a net to catch us, there would be people standing by to ensure that the right thing was done and we wouldn’t be left just to fall.
But what if there were holes in that net?
When a family member dies in care, or in a hospital you expect well-oiled and well used machines will spring into life, investigate and punish. It doesn’t matter who you are, rich or poor, clever or not, there’s an almost 100% chance that someone in your family will either be professionally cared for or be in a hospital at some point in your life, so this is literally something that affects us all.
If you’re worried about what’s going on in the care home or hospital you tell the Quality Care Commission. They may already have the place on their radar and will investigate further and see if it reaches their standards. If it doesn’t – worst case scenario, they may even have to recommend putting it into “Special Measures” or even closing it down. They may even want to involve the police.
So no holes there.
Oh, but there are…………………………………
If your family member is one of the 24,485 young people (thanks to Professor Chris Hatton for the statistic) who live in “Supported Living” it’s unlikely that the Quality Care Commission knows of you or knows the home you live in even exists. That’s exactly what happened to us. https://justicefornico.org/2015/02/25/secrets-and-lies/ After I wrote this blog I invited Andrea Sutcliffe, Chief Inspector of Adult Social Care for the Quality Care Commission to comment and outline their position regarding this problem. I told her I would then put her reply on my blog. So far I only have this email from her:
“I did read your blog when you first published it but will go back again and let you have some thoughts. The scope of our remit in this area is I know a source of concern and frustration for quite a few people.”
Whether it’s the CQC, a big health provider, a hospital or one of the big charities, I think it’s too easy to just throw stones and run away. If you really want change and improvement then you have to engage with them and also that means hearing their point of view – even if you don’t agree. I’d still like to hear more from the CQC’s on this situation because when you’re telling each other your opinions then you then have a conversation and with a conversation there’s possibility of making good changes. But right now nothing has changed since I wrote “Secrets and Lies” and those 24,485 young adults are still falling through the net as far as the CQC are concerned.
This matters because “Supported Living” is increasingly the preferred option for Local Authorities. For young disabled adults who can’t be cared for at home, or who want to live an independent, grown up life with support, supported living really does seem on paper to be the way forward. Everyone gets a personal budget decided by the Local Authority which meets their needs, a few of them share the house together and their personal budgets cover the cost of the support they need.
It should be a simple model which works really well, but the problem is that many of these homes are in fact owned or/and run by large organisations who run care homes throughout the UK. For them it’s very much a business. Like many poorly run businesses, they concentrate on running the business, making the sums add up and turning a profit where they can, rather than developing and sustaining a great product. They forget what really matters most – giving great customer care and satisfaction.
And that is when the problems start. That’s when our young people become the terrible statistics of avoidable death. It’s shocking to think of your son or daughter dying in a place that the Quality Care Commission has never heard of, let alone inspected – but even more shocking is how easily and often it happens.
Of course there’s more than one layer to the net. When a family member dies in care not only do the care providers have to inform the CQC (unless of course the young person died in supported living home, in which case they don’t – hence why the CQC were completely unaware of Nico’s death) but they also have to contact the local Clinical Commissioning Group.
If the Clinical Commissioning Group decide it’s needed they will then put into place something called a SIRI (Serious Incident Requiring Investigation). The purpose of this is to look into what happened and make sure that all aspects of investigating the death have been carried out properly. That the family have been well supported and involved and if necessary, changes are made to the care structure and policy of the care providers to prevent it happening again.
The NHS describes a SIRI like this “Serious incidents requiring investigation in healthcare are rare, but when they do occur, everyone must make sure that there are systematic measures in place to respond to them. These measures must protect patients and ensure that robust investigations are carried out, which result in organisations learning from serious incidents to minimise the risk of the incident happening again.”
So far, so good. But what if there’s a hole in the net?
In our case Oxfordshire CCG didn’t realise what had gone wrong with Nico’s SIRI until they revisited the paperwork ahead of meeting with us to discuss the Independent Investigation into his death.
We are lucky – we are dealing with people who care and who feel it really matters that they do their job well. They understand the meaning of “duty of candour” and the vital importance of transparency and truth. So they told us exactly what had happened and even though it shocked us, we were glad to know. It shocks me how easily this happened and how easily it might have gone undetected. It makes me wonder how many times this happens on a regular basis around the country and how many other parents are unaware that they have fallen through the net.
Southern Health informed Oxfordshire Clinical Commissioning Group that Nico had died and OCCG opened a SIRI. They then wrote to Southern Health requesting additional information and when that information arrived, they scrutinised it and were not happy with what Southern Health had told them. They felt that important information was missing, so they wrote and asked for more information. When Southern Health wrote back with their answer, OCCG still felt they were not satisfied that this answer met their criteria and so refused to sign off and close the SIRI.
However, although they were not happy with the information Southern Health had given them and the SIRI remained open, it was then filed and forgotten about and nothing was followed up.
They have been terribly upset to discover this and even more so when they discovered on meeting us what we had gone through as a result. Had they pressed Southern Health on this and followed up, would things have been different? To be honest, I really doubt it knowing Southern Health’s track record, but as this has only come to light because they are now organising Nico’s independent investigation, we can all see how easily this might never have come to light.
The net which is there to catch families like ours is fragile. Holes appear all too easily. Often they are no-one’s individual fault but if the system put into place to investigate death’s like Nico’s and support families like ours was far more joined up, holes where the joins are meant to be and often aren’t, would be easier to spot. It would be harder for a family to fall through without anyone noticing or for a much loved child to be lost without investigation.
I know that a lot of pain has been caused to individual families when the SIRI and the CQC report decides after investigation that there’s nothing more to be done and their part in the investigation is closed and over. That can be a very, very hard thing to read and to deal with. But harder still for us is knowing that the OCCG and the CQC didn’t even know what had happened to us and to Nico. It’s as if we found ourselves over a huge hole that no-one had seen and we just fell through the net.
And no-one even noticed we had gone.