Anyone who has been following @sarasiobahn’s remarkable blog My Daft Life will know about the death of her 18 year old son whilst he was in an NHS care facility. In Sara's blogs, her son (referred to as Laughing Boy, LB or The Dude) comes across as a remarkable person. This young man had epilpesy, and he died whilst having a bath in an assessment and treatment unit. It is appalling that she is having to face the aftermath of this loss. It is obscene that the investigation into his death has become a battle.
She is now having to navigate her way through an internal investigation into the death of her son, and the nature of that investigation is becoming a little strange. It’s a worrying example of the lack of transparency of the NHS when dealing with failings. All those words about involving families, learning from events, transparency and openness that have appeared in so many reports recently seem stretched to breaking point here.
One aspect of that bizarre process is the trust's odd use of the word advocate. I know a bit about advocacy - I've spent the last 10 years developing standards and quality systems in advocacy. I'm interested in the relationship between formal and natural advocates. I think both are vital. Until processes and services are designed to suit people rather than systems people will need advocates of one kind or another.
Sara was told that she could have an advocate at stages of the investigation. This could be seen as a way of bringing some transparency to the process. By “advocate” they meant a friend or family member. No problem there; friends and family members often play a natural advocacy role. It’s not the same as an independent advocacy role (the thing that I know most about) because family and friends automatically have a level of conflict of interests, they have another role in that person’s life. As I said, not a problem when that is the person that someone wants to be involved. It’s an odd use of the term advocate, but it does have an echo in a piece of research on the value of advocacy and supporters in child protection proceedings.
The trust could have suggested that she could have an independent advocate; someone who would have no other role in Sara’s life, who would look out for and avoid conflicts of interests. That’s something that would be a legal right if this were a complaint process rather than an investigation. But that’s not what happened. As it turned out Sara asked a friend who also happened to be an independent advocate to be involved.
Then something odd happened. The trust said this person couldn’t be the advocate because they had a conflict of interests; she occasionally volunteers for a charity whose Chair used to work for the trust’s predecessor. I find it hard to see that as a realistic conflict of interests. And let’s remember, the trust had specifically not tried to find an advocate without a conflict of interests.
How big is the possibility of conflict of interests? Well, if the “advocate” worked for the trust it would be a BIG conflict. Used to work for the trust? Some conflict. Worked for a former worker of the trust – potential conflict. Volunteered for an organisation, being supported by someone who reported to someone who had retired from the predecessor of the trust? The phrase vanishingly small comes to mind.
I make it four degrees of separation. There's a theory that you'll be able to connect to anyone in the world in six. Given that, it would be hard to find anyone in a local area that can’t be connected to someone else through in four links.
Then the trust appear to have made an even stranger decision. They said that Sara had now forsaken her right to choose an advocate and that one would be appointed for her. And that this “advocate” would not be able to tell Sara about what was happening in the investigation.
So that’s someone that wasn’t asked for and who will keep information confidential from the person they’re meant to be representing. That’s not independent advocacy. It’s not a natural advocate. It doesn’t conform to any of the principles or reasonable expectations of what any type of advocate might be. I don't see how it can realistically be described as any form of advocacy. In fact, the word advocacy can only be used if the trust are employing the Humpty Dumpty convention that “words mean whatever I say they mean”.
So there was no advocate. A measure that was meant to introduce some transparency into an internal investigation into the death of a young man had been warped into another aspect of the investigation from which LB’s parents are excluded. The window into the investigation was blocked up. The circumstances of the death of LB need to be thoroughly and transparently. But how can anyone have confidence in the process where transparency is whitewashed, where Humpty Dumpty investigates?
Pressure from Sara's team of supporters and social media has led the Trust to reconsider, and Sara's original advocate is now to be involved again. As she said on an update post,
"Thanks to Team LB for such an instant and remarkable response to her removal, and the power of social media for such dedicated and collective support. And good on the Trust for listening and responding."
I'm really glad that this has changed, but this should never have been necessary. There should never have been a need to struggle and battle for support. It wouldn't have been needed if the trust had remembered that the focus here must be on Sara, her family and The Dude. Here's hoping the change on advocacy reflects a wider change.