To not know if I should do something about this ?

[realtimeintrusion]

I’ve just left a FB group I was on (I had joined as my child has similar medical issues so thought it would be a supportive and informative space).

What I’ve seen however over the last few months is what feels like intrusion into a young adults life. Real time updates on hospital appts and admissions (it’s a huge group so this worried me about safeguarding?) plus intimate details of certain procedures and yesterday and today vulnerable pictures of the young adult in a hospital bed / asleep / unwell. I’ve left the group as it’s clearly not for me and I can understand how the parents want support and a place to vent but it seems intrusive and just not right ? Do I just walk away or do I report it somehow ?

Obviously I have no idea if the young person can fully consent or not the group states they have severe SEN as well but giving their location in real time seems so concerning and the pictures of them when not well / awake in bed are what made me leave the group as they have no privacy ?

Report to who?

The parents/carers/family are responsible and have taken the decision to make public the details of their child and you hold no authority over them.

Yes report the group to facebook

I don’t know that’s my question ? It’s just the real time updates of location and details about intimate conditions and procedures with the photos ? That’s why I left the group it feels like intrusion at a persons most vulnerable times and not a group about information and support for conditions ? They are telling the young person everyone is their ‘fan’ and they are clearly trusting and this could make them more vulnerable ?

I absolutely share your concerns and hopefully some day this kind of thing won't be allowed. Right now though it is. Parents can share whatever they want about their kids, influencers even monetise it. I think the only thing you could have realistically done is point out the ethical and safety issues with sharing so much about their child but I doubt they'd have listened.

I agree that there is something not quite right about parents publicising their child’s illnesses in excruciating detail with pictures on social media.

I don’t think there’s anybody you can report it, there are countless public accounts like this on social media where parents share photos of disabled children in hospital and share every intricacy of their medical information online. I find aspects of it uncomfortable but I think some families feel a strong need to spread awareness and receive the support of strangers in times of crisis, I’m very private so it would be the complete opposite of what I wanted so it’s hard to understand and I do feel for the children/ young people who aren’t able to properly consent, but it is very much the world we live in at the moment and there is a lot of money to be made if you make it as an influencer on social media.

I just found it so worrying the group had thousands of followers some may not be good people and they have access to real time location and intimate details of medical issues ? It just really really bothered me and I know people say safeguarding is everyone’s business so I feel like I should at the least report to FB ? It just really didn’t seem right the level of detail and the locations ?

They haven't broken any laws so there's unlikely anything you can do about it. Is it a private or public group? I know anything shared online can be copied etc but there is a bit of a difference sharing in a closed space than all over public Facebook.

I do share your concerns though. Theres a family locally that share every detail of their child's medical condition. They arent afftected intellectually so will be able to read all of this in future. I dont mind the awareness raising type posts but a lot of it makes me very uncomfortable- especially as it seems to be veering towards trying to get influencer type sponsorship etc.

It’s a private group but had a lot of people in it my concern was just that what if anyone is there for the wrong reasons they have access to too much information and a vulnerable persons location ? Plus al they’d have to do is say they are one of the ‘fans’ and they have that persons trust ? I know it’s not illegal I just feel it’s very risky to put so much information out there .

Some of these groups have hundreds and thousands of followers! Honestly this is a very normal part of social media, I’ve seen countless accounts where the exact hospital a child is in at that moment is shared. Facebook aren’t going to see this as a safeguarding issue or do anything about it, people are allowed to share their locations publicly if they want. I have also seen popular public accounts on Instagram which show the kids in school uniform with the school logo clearly showing, real time accounts which show the family on holiday with the exact resort posted. It’s easy to use the term ‘safeguarding’ but whilst it does raise questions around children’s right to privacy and issues around consent there is very little actual risk to a stranger knowing that child’s medical information and location, what kind of real harm are you concerned about? Hospitals have security and cameras and it doesn’t sound like this is a
bog rich family who need to worry about kidnapping or the like, it’s a breach of the child’s privacy but it’s not really a safeguarding risk.

To me it seemed like it was a safeguarding risk. To have someone vulnerable and trusting told people are ‘fans’ , for their intimate medical information to be disclosed and real time location information? Personally it rang alarm bells and I realised the group wasn’t what I thought but felt maybe I needed to do something more than just leave ?

You say they are a young adult, how old? Personally I think it's dreadful and something I would report to the hospital if they've stated where they are.

It might be morally wrong and definitely ill advised, however legally and practically no one will care.

It’s not a safeguarding risk if the information is being shared by the parents. It might become a safeguarding risk if the parents were offering the ‘fans’ a chance to visit and meet with the child unsupervised or offering to share extra, private photos or information for money. Those kind of actions could put the child at risk of grooming, exploitation etc. But parents sharing on social media that their child is in hospital, and why, would typically not meet the threshold of a safeguarding issue unless there were other factors coming into play. I work in a special school and several students in the school have public social media accounts set up by parents linked to their disabilities, yes it is a bit uncomfortable the amount of information being shared about their medical conditions and disabilities but it’s not a safeguarding issue by itself.

Just walk away OP. They must be under a lot of stress and while you may disagree with them sharing info in this way, the likelihood of it causing harm is small. Especially when they will be in touch with many medical professionals and likely social services as well already. Someone is looking out for them so please don’t stir the pot unless you have suspicion actual harm is being done.