Working in healthcare while also receiving care puts me in a weird, wobbly little space in life. I work in compliance part-time for a rehab unit, and I’m also a service user in Adult Social Care.

That means I’ve been on both sides of the clipboard and I know exactly what happens when care plans aren’t followed, dignity is overlooked, and service users are treated like a box to tick rather than a person.

Personal Care vs Social Care: What’s the Difference?

For anyone not swimming in this world every day, here’s the short version:

• Personal Care – Things like medication preparation, assistance with bathing, and help with food preparation.
• Social Care – Support to get out and about, including someone accompanying you for safety and accessibility.

I currently receive both – which sounds great in theory. In practice? It’s been… rocky.

When Care Works — and When It Doesn’t

At first, I was lucky. I had a fantastic carer who “got” me. She left to start her own care company (proud moment), and now her company handles my social care element. My personal care stayed with my original provider. That’s where the chaos began.

Some hadn’t read my care plan. They didn’t know my history, my needs, or even why they were there. One week, so many strangers came and went that I barely got any actual care. The frustrating part of this was that I was told that my previous ‘banked’ hours were being used for this, as well as that week’s care hours.

When new carers came to “shadow,” it was as if I were invisible. Questions and comments were directed to the colleague shadowing, not to me. I was reduced to “she” — even though I was right there.

Small Slip-Ups, Big Impact

Eventually, I found a carer I clicked with. Things mostly ran smoothly… until they didn’t.

Like the day my carer took a long, unrelated call from the manager during my visit. The one task I’d specifically asked for didn’t happen. It left me physically uncomfortable and emotionally sidelined.

And then came The Week From Hell™:

• A no-show with zero warning.
• A manager claiming they’d told me something (they hadn’t — I had proof).
• Being told my “five hours a week” meant they staffed me entirely on overtime, making me feel like a burden.
• A thinly veiled threat to tell the council they couldn’t support me.
• A carer ignoring my instructions that I would let them know when to come in to the bathroom, instead opting to watch me undress and walk through naked to my bathroom.
• And the pièce de résistance: a cover carer ranting about how they “knew service users who got more in benefits than they (my carer) did working and owning their own home” — not exactly in the job description.

Why Dignity in Care Matters

I don’t fit neatly into a box. I have care needs. I also work. I can advocate for myself most of the time… but it’s still exhausting.

And it makes me wonder — what about the people I work with? The ones who can’t speak up?

Are they being spoken over? Are decisions being made without them? Are their care plans sitting unread, their needs misunderstood?

When I sit in morning meetings, I have to stop myself blurting out:

• “But what does the service user think?”
• “What actually led to this incident?”

Because I know what it’s like when no one listens — and I don’t want others to feel that same invisibility.

Looking Ahead: Direct Payments and Hiring a PA

I’m likely moving to direct payments soon so I can hire my own personal assistant (PA) and choose the people who support me.

But if you work in care — whether you’re behind the desk, on the floor, or just popping in for a single visit — please remember:

• Service users aren’t boxes to tick.
• We’re people.
• We deserve dignity.