5. Children’s stories and personal information
“It’s like being in a clear jar. Everyone around is talking about it. You can look straight into it. Because there’s no privacy for that thing in the jar and that’s how children feel when they’ve got, like, just people talking about them.” – Jamie, OHOV
Here are the themes identified by young people within ‘Children’s stories and personal information’
Relevance
Proportionality
Consent
Respectful and supportive questioning
Discretion
Summary
Having access to relevant personal information ...
Adults supporting children in the care system need to have access to relevant personal information to provide support that is tailored to each child’s individual needs. Children and young people spoke about the responsibility adults have to ensure that information is handled appropriately:
“Adults should understand the power and duty they have over children’s information. It’s a privilege to have access to this information.” – Abbie G, OHOV
Access to relevant personal information
Some of the children we spoke to said that they recognised the necessity of recording and sharing information about them and their lives. Having a record of the events that took place in their earlier lives helped them understand more about their history:
“There were things on my ICM that I didn’t know about from when I was younger. I think it’s good to have a record of everything so when you read it you can understand why some things happened.” – Young person from Inside Out
“On the positive side, this did help me understand why something has happened to me…why I was in care. I just blamed social work for taking me away until I discovered about my past.” – Poppy, OHOV
Some young people wanted the adults in their lives to be aware of certain information about their history in order to be better supported:
“Sometimes it is important to know things that have happened in the past – for example, things that could trigger someone – so it can be important that they (the adults) know.” – Ryden, Experts by Experience.
“I wish more of my teachers knew a bit about my background so I could get help when things are too much for me. There are some subjects they talk about in school, like drugs, which are triggering for me.” – Daisy, Perth Champs
“I’d like adults to work together really closely…this helps to give a context to my support and prevents people making assumptions about me!” – Jason, St Mary’s Kenmure
“I like people to know that I’m active so it can continue.” – Young person from Rossie
“Information about you should be kept for long as it is relevant. It can be helpful for your throughcare supports.” – Young person from Shetland Crew
“You might need to know certain information about our lives. We discussed this as a board and some people felt fine with this as it helped them feel supported. On the other hand, some of us felt really uncomfortable with staff knowing details about our personal lives. Sometimes it’s unavoidable that you’ll have access to personal details about our home life. If you need to know this information, it’s so you can understand us and support us.” – Andrew, OHOV
We spoke to several young people at St Mary’s Kenmure. All the young people had a focus on who gets to find out personal things about them and seemed unanimous in wishing to know who has this knowledge. Several young people spoke about the importance of inputting their own personal experience and views on events into the information and paperwork adults receive about them. This can be done by talking to them individually about their lives and getting to know them. They spoke about staff being able to ‘piece together a story about you- what you make of your story but also why you feel the way you do’. The importance of this process being transparent and shared with young people was mentioned.
Paige, a young person at the National Leadership Network speaks about how it felt to receive her paperwork as a young adult.
Relevance
While historical accounts of children and young people’s earlier lives can be helpful, both in aiding young people’s understanding of their past and allowing adults to have a fuller picture of their background for the purposes of tailoring support, some children and young people were unhappy that ‘negative’ past behaviour was recorded. They didn’t want a reminder of things they had done in the past that were no longer relevant, and made them feel stigmatised and judged.
Proportionality
As well as ensuring that information recorded and shared is relevant, children and young people ask that gathering and sharing information is done proportionately; capturing only what is necessary and shared only with those who need the information in order to provide support:
“Many of us value our privacy and only want those whom we trust to be told the details of our lives. Some of the young people on the OHOV board were ok with certain trusted staff knowing about our lives.” – Andrew, OHOV
“Information shouldn’t be shared if it’s not relevant due to the adult’s role or the timeframe since the incident…it also has to be accurate.” – Ryden, Experts by Experience.
“Adults should only have the information that is needed. A teacher doesn’t need my medical information.” – Rhiannon, Shetland Crew
“My depute came to my hearing and found out all my personal information. That made me really uncomfortable.” – Courtney, OHOV
“Information should only be shared with other adults if it needs to be. It depends what it is. The context and the need are key to that answer.” – Young person from Shetland Crew
“Do staff in education need to know what I do in the evening?” – Young person from Rossie
“If you take into account what people know about me, half of that is not relevant to other services but they still find out.” – Jason, Shetland Crew
“If it is really significant, maybe the bare minimum of what happened – but not all of the details – they need to know something happened, but they are not the police and they don’t need to know everything.” – Gemma, Experts by Experience
“On an island, everyone knows your business.” – Rochelle, Shetland Crew
“It makes you angry. Only certain people should be given access to your records. Sharing has to be purposeful.” – Grainne, Experts by Experience
“If I found out that someone knew personal details of my life, I’d feel embarrassed and uncomfortable, like I want to die. Petrified. I don’t want other people knowing my private business. I don’t even know these random people, they shouldn’t know my personal history.” – L, Falkirk Champs
“You get used to it but it’s annoying. It’s important that I get to share what is important to me” -Rhiannon, Shetland Crew
“Any information that is classified, should not be shared. Any information that the young person doesn’t want shared, shouldn’t be shared.” – Rebecca, Experts by Experience
Consent
Rebecca and Rhiannon’s quotes above highlight the importance of consent. Many young people said that wherever possible, children should be asked for consent before personal information about them is shared:
“It should be up to the person that information is about, and they should at least be asked.” – Rhiannon, Shetland Crew
“Information should be shared on a need-to-know basis, with it being explained to the young person before it’s shared so they can object, directly consent, or share opinions. This will also help empower the young person.” – Ryden, Experts by Experience
“If information is passed on, it should have a context and input from me. I should be the first to see the reports and get a chance to change the story or report if it’s not accurate.” – Jason, St Mary’s Kenmure
“When information is shared without my consent it can be very degrading and hurtful, especially if you were judged. It can make a person very doubtful due to trust.” – Rebecca, Experts by Experience
“If a worker is leaving, I’d like them to take the time to tell me in advance, talk to me about how I feel, and ask for my consent to share details of my life with the next worker.” – Ash, OHOV
“I think the majority of all my whole life I’ve always had staff workers be quite consentful; they’ve been quite open and honest. They’ve explained to me, kind of, the way it works, like, what was expected of me, what the rights are in it all. Do you know that kind of stuff? I think I’ve always had that transparency quite luckily.” – Renee, National Leadership Network
As previously stated, before sharing information about children and young people, it’s helpful to carefully consider how much information should be shared and with whom. Without purpose, information sharing can be construed as gossip:
“At the residential I am at it’s like you tell one adult something and they tell everyone.” – Amelia, Experts by Experience
“If teachers are given sensitive information about our circumstances, we would want them to treat this information as if it was their own, and resist the temptation to share it with colleagues. Our lives should never be staffroom gossip.” – Andrew, OHOV
“The residential workers gossip about me. They all share it.” – Amelia, Experts by Experience
“I don’t like feeling like I’m being spoken about.” – Young person from Rossie
Children’s privacy must be balanced against the risk of harm. It isn’t always possible to give children a choice over whether information is shared. The young people we spoke to asked that in such cases the child is at least informed before the information is passed on:
“It makes a difference when professionals ask a young person if it’s ok to share their information rather than just doing it. If that’s not possible, at least inform the child that it’s going to happen and explain why.” – Neil, OHOV
Listen to Ciara from OHOV talking about the importance of consent.
OHOV board member Jamie talks about the harmful effects of children’s right to privacy not being fulfilled
Respectful and supportive questioning
Adults might need to speak to children directly in order to gather the information that will inform a plan of support. It’s important that questioning is done in a respectful, supportive way:
“My teacher would make sure that I was completely comfortable answering the question; she was just like, ‘you don’t have to answer that if you don’t want to. Like, tell me to go away, I’ll go away’. And I was like, ‘oh, it’s fine’. I answered the question. And she really honestly helped me open up so much. I really struggled a lot with that.” – Jamie, OHOV
“When a child opens up about their experiences of care they should be given extra support if they need it. Questions should be asked in an understanding way.” – Poppy, OHOV
“Make sure the child knows what you’re wanting to do with the information you’re going to be gathering and also make sure it’s their wording. Keep them involved, follow up after you’ve done the report or like once you’ve gathered the information and you’ve put it to where you’re wanting it to go, so the young person knows.” – Lisa, OHOV
Children shouldn’t be asked to retell their story repeatedly, or pressured into sharing information they’re not ready or willing to talk about:
“I’m desensitised to this. I’ve had to tell my story over and over.” – Liam, Experts by Experience
“Don’t force children, or young adults who don’t have capacity, to answer difficult questions.” – Lisa, OHOV
“Privacy isn’t respected by staff when dealing with children. Their right to privacy is ignored. If an adult doesn’t want to talk about something, then other adults will accept that and not keep pushing them to talk.” – Emma, OHOV
“When adults keep trying to force a child to talk it can lead to the child shutting down or just telling staff what they want to hear.” – OHOV board member
Jason, a young person at St Mary’s Kenmure, spoke about his dislike of re-telling his story and how he took some control over that:
“Every next person I spoke to asked my back story. I conquered this when I came to St Mary’s by writing down my own story in my own words and sharing it with the people that needed it. This stopped me having to re-tell it. I didn’t share it with anyone until I was ready.”
This meant that staff could understand what had happened to Jason in his own terms and get to know his needs more through that context.
Discretion
Children and young people emphasised the importance of discretion to protect the privacy of children and young people. They gave examples of times the adults in their lives had unthinkingly drawn attention to their situation:
“My teacher used to look at me in a really obvious way whenever she said ‘parents…or carers’.” – Abbie M, OHOV
“The information about my care experience is my information, not for others to share. The school tannoy was used to let me know my social worker was there to collect me.” – Gemma, Experts by Experience
“A social worker took me out for coffee and didn’t think twice about wearing a lanyard. Your friends then know you have a social worker. They are not doing this on purpose, but it still matters.” – Rhiannon, Shetland Crew
There are simple ways in which adults can support children more discreetly and thoughtfully, to avoid compromising privacy:
“Close the door, talk to me one to one, make sure no one else can hear us.” – L, Falkirk Champs
“Take me into the quiet room and make sure no one else can hear. It’s only my business.” – Eisa, St Mary’s Kenmure
“There should be a specific person for young people to talk to about their mental health. A safe person who won’t share what you tell them with residential staff.” – Ash, OHOV
“There are ways of letting teachers know you’re going through a difficult time without compromising confidentiality. Something simple like a mark on the register next to your name to let teachers know to go easy on you and be welcoming can make a difference.” – Andrew, OHOV
“If she told me to stay behind after class she’d be, like, ‘I will make up a reason, Say, like, for extra homework or something,’ because you know what schools are like. If you have to stay behind in class, people will think you’re in trouble. But, like, she’d say it quietly to me.” – Lisa, OHOV
It’s also important to consider the physical place adults meet with young people to promote discretion:
“If you meet your social worker outside the school you don’t want to be talking about, like, private things there… talk to the child, and also suggest a couple of places but don’t force those places on a child. Also make it not a place that all children and young people go to, so they know it’s not like, oh, this is a place where foster kids go to meet.” – Lisa, OHOV
Summary
Information shared about children and young people should be proportionate, relevant, and only shared with others discretely, on a need-to-know basis. Children’s lives should never be the subject of gossip. When sensitive information is passed on, children ask that where possible, their consent is asked first. Where this is not possible, they would like to be informed, preferably prior to the information being shared. When working directly with children to gather information about their lives, conversations should be supportive and understanding. Children should never feel pressured to disclose information they aren’t comfortable sharing.