I didn’t find out until after my daughter died that she had taken six overdoses in the weeks before her death and asked for help. I didn’t know she had phoned the crisis team to tell them she had tried to take her life. I didn’t know that she had been told to phone back later to let them know how she was feeling. I didn’t know that nobody had been sent to her accommodation to help her. I didn’t even know that she was under the care of the local Trust. Because nobody had bothered to tell us. Which why confidentiality is a topic that I’m a bit obsessed with.
I call confidentiality the “Get out of jail free” card. It gives you permission not to take a difficult decision. If the worst happens then you can turn round and say: “I knew, of course I did, but Tobi told me not to tell anyone, so I didn’t”.
When I learned about the circumstances of Tobi’s death I thought we had just been uniquely, catastrophically unlucky. Surely, I thought, nothing like this has ever happened before. How wrong could I be? I have learned of not some, but many cases like ours in the last five years. Not identical, but similar. Too similar for Tobi’s death to be an anomaly.
In discussions I have listened to and participated in, someone will say that confidentiality is a tricky subject. At some point in this soul-searching someone will invoke the Caldicott Principles, as if the answer is contained therein. The Caldicott Principles came into being in 1997 as a reaction against data breaches reported to the Information Commissioner’s Office, 41% of which came from the health sector. These principles “laid a basis for the adequate interaction of personal information between the patient, and medical and government officials to keep medical records and registers safe and secure.” The first six principles are all about keeping patient information as confidential as possible. Phrases such as “not unless absolutely necessary” and “minimum necessary” and “strictly need-to-know basis” reveal the tenor of the report. Principle 7 was added later: “the duty to share information can be as important as the duty to protect patient confidentiality”.
Which is all very well. Notwithstanding the instances where it is important to protect patient confidentiality, I worry that it has become a rule so ingrained in policy and practice that it is taken for granted that nothing should be shared, to ensure no embarrassing leaks occur, a rule that employees are too frightened or at the very least reluctant to break, “unless absolutely necessary”, which can and I suspect does mean, hardly ever.
Without wanting to delve too deeply into this particular can of worms, I would make two points; firstly, the principles have been around since 1997 and don’t seem to have saved many lives, what with the suicide rate increasing year on year; secondly, the people my daughter came into contact with presumably knew of their existence and it made no difference whatsoever. They weren’t much use, were they? Those people did not know Tobi’s parents existed and were not bothered about finding out. The principles were written with the purpose of keeping information safe, not of keeping lives safe, and that’s why they are singularly unsuccessful in doing so. Which is why they are irrelevant when it comes to the question of whether parents, families and carers should be involved in the care of their loved ones.
When we went to clear out Tobi’s room after her death, we found two phone numbers next to her bed that we assumed she could call in an emergency. This gave us some peculiar sort of comfort. We thought, oh, at least someone was trying to help her, she wasn’t alone. We also assumed she must have decided not to use those numbers or couldn’t bring herself to do so. Imagine then our subsequent disbelief when we discovered she had phoned one of those numbers. The reality was, she phoned for help and it made no difference. And the terrible truth we have to live with is that she was phoning the wrong people. If she’d phoned us, we’d have set off to help her immediately. We‘d have asked one of her friends to go round to be with her until we arrived. Tobi, for reasons known only to herself, reasons we will never understand, could not ask us for help. But it shouldn’t even have reached that point. If we’d been involved earlier Tobi wouldn’t have needed those two numbers by her bed. And that’s the great lesson from our story. Not involving parents can have catastrophic consequences. If we had been involved in Tobi‘s care, it would not have ended as it did. My daughter didn’t need to die. We could have done more to save her. Together.
When Tobi turned eighteen, we, her parents, were no longer entitled to know what was happening in her life if she didn’t want us to. The authorities were bound by the rules of confidentiality. In Tobi’s last few months no effort was made to enlist our help and support. As a result the opposite of what was intended occurred. Something bad happened because confidentiality was not breached. Or at the very least, because confidentiality wasn’t breached we were not given the opportunity to prevent that very bad thing from happening. Parents do not have the right to be included in the care of their mentally-ill post-18 children, yet they are expected to clear up the mess following a suicide including, forgive me if this comes across as blunt and sensibilities are offended, arrange and pay for the funeral. The invisible and ignored become visible again when the mental health authorities have failed and are no longer bothered.
Most parents want to be able to help their children. All the ones I know certainly do. All the parents I have spoken to believe they should have the right to be involved in looking after their children, regardless of how old they are. It seems wrong to me and them that parents aren’t automatically involved. I believe that there should be a presumption of parental inclusion, not a presumption of parental exclusion, which happens by default when confidentiality is paramount. After all, if the worst happens, it’s the parents who are expected to pick up the pieces, not the people who decide they should not be involved in the first place. Let parents at least have the chance to prevent the worst from happening. In our case I believe we could have prevented it, and Tobi would still be with us.
When I tell Tobi’s story to mental health professionals I say this: “Perhaps you see breaching confidentiality as a bridge too far and believe that crossing the river is too risky. So you stay on this side, at least here you know what things look like. But I’d like to encourage you to cross the bridge. It won’t give way under your feet. You won’t be plunged into the raging torrents below. Waiting on the far banks are people who want to help you do your job, who want above all to save their child‘s life. And no matter how old that child is, 15 or 25 or 35, they may at some point be considered an adult in the eyes of the law, but to their parents they are still their child. We all know that. When meeting someone for the first time we often ask them if they have any children, not if they have any adult offspring.”
I am not advocating that all parents be told all the details of their child’s problems. There is a spectrum ranging from “tell everybody everything” at one end to “tell nobody anything” at the other. As neither extreme is sensible or tenable, I spent quite a while trying to locate the sweet spot in between them. I was going to put my mind to teaching everyone how to find it, and probably write some guidelines, because everyone loves guidelines and it’s expected. Then I realised there was no point. The sweet spot doesn’t exist, or if it does it’s too cunning not to evade guidelines.
So what can we do?
What we can do is change the narrative and reframe the argument. Instead of talking about why it’s important to breach confidentiality (sometimes), which sounds so negative, we should talk about why it’s vital to share information. That’s much more positive.
Sharing information should be the default position, not maintaining confidentiality at all costs.
To this end I say to the health professionals I address that if they are talking to a young person in distress and want to do the right thing, yet face a dilemma arising from all they have been told about confidentiality, they should change the question they ask themselves.
Instead of asking themselves “Is there a good enough reason to involve parents?” they should ask: “Is there a good enough reason not to?”
No parent should have to experience the death of their child and say “I didn’t know.” In fact, even better, if they know they might not even have to have that experience at all.
Last Updated on 1 June 2026 by MFCount2