Tom’s Story


‘The staff are meant to be on my side, but if they’re not getting the basics right, I don’t know how I’m supposed to trust them.’

Not long ago, Tom had had to challenge his supported accommodation provider on how they were using his personal data, including data that is particularly sensitive and important.

‘I couldn’t get the staff member to see how it was a bad thing – having private stuff about my mental health unlawfully disclosed.’

My charity has its values printed on the wall in big letters:

OPENNESS and OPPOSITION TO INJUSTICE are two of those.

But they won’t tell you how they use your data. They get it right for the donors but not for the people living here. I got the usual piece of paper, ‘just sign this’, they said. They don’t explain it could change your life.

It’s a joke. Makes a mockery of their values. It should be enough simply to say it’s the law – this is how I should be treated. They get it right for Health and Safety, they get why safeguarding is important, but not data protection. They expect staff to know what they’re doing with cheapo training – just a few tickbox sides of A4.

When I challenged them on it the CEO initially shut me down ‘No one else has complained about this’ they said. I was asked what my motivation was – I had to justify why I was raising it. It led them to ask questions about my mental health. They pretended that they knew what they were doing – they said one of the trustees was a lawyer – like that meant they knew something I didn’t. So they set up a meeting a week later.

It was so nerve wracking – I kept rehearsing what I was going to say in the meeting. I was able to get some advice from outside – if I hadn’t it would just have been me against the CEO and support manager in the meeting. I was catastrophizing – I could lose my home, my social circle, my job. My support worker should have been as up in arms as I was. They started off saying some nonsense about how the information wasn’t really personal data.

It shouldn’t have to be like this – to be so nerve wracking to raise concerns. You feel vulnerable here. You might not understand the technicalities of the times you’ve been failed, but you know you’ve been fucked. The power imbalance is more obvious in some organisations than others, but it’s always there. I’d get told, ‘We’re all on the same team’. But this ignored the different aims people had – residents were there to get there lives back on track, but the charity had to worry about hitting targets and get funding.

Many residents gripe a lot, but when it comes to actually challenging it, they won’t – they say they could get kicked out at any time for anything.

So it gets left to the reps. I know I get treated differently because I’m willing to challenge and stick up for others. The burn-out rate is so high for the reps – both sides hate you, but you don’t get any training, any support. Not once did a member of staff ask me how I was doing when raising concerns – they seemed too defensive to see that it has a big impact on us, whilst saying the accommodation is a psychologically informed environment. Some vulnerabilities are more obvious than others, but if you’re articulate staff assume you’re not vulnerable so you get neglected by them.

But I am vulnerable because I’m at the bottom and reliant on others. They don’t see how that position affects people. When you’re told you have a meeting with the CEO in a week to discuss something you immediately catastrophize which ends up being far worse than the actual meeting. People leave supported accommodation because they’d rather be homeless than live with the fear and catastrophizing.

Anyway… so far they haven’t unlawfully shared my data in the way they were before.