If you use social care, you already know the things nobody puts in the leaflets.

• A Care Plan that doesn't look like your life. Written by someone who met you once, ticking boxes that don't match your routine, your needs, or what actually matters to you. A document that's supposed to be about you, but reads like it's about nobody in particular.
• Fifteen minutes, at a time you didn't choose. A tired care worker rushing through a visit that was scheduled around a rota, not around you. No time to talk, barely time to help you get dressed, and then they're gone to the next call.
• Charging that punishes you for needing help. A financial assessment letter that makes your stomach drop before you've even opened it. Paying for the privilege of getting through the day.
• Care ripped away with a letter. A reassessment, a budget gap, a review meeting, and suddenly the support that took months to build is gone. Your world getting smaller again.
• Health and social care pointing at each other. "That's health, not us." "That's social care, not us." You're not just managing a condition, you're managing two systems that won't agree on who you are or work together to give you what you need.
• No map, no plain English. Eligibility criteria, direct payments, personal budgets, safeguarding processes, all while you're exhausted and unwell. A maze with no instructions.
• Different councils, different rules. Approved in one area, refused in the next. No consistency, just a postcode lottery.
• Trying to recruit and keep a PA on terrible wages. Asking someone to do intimate, skilled, trusted work, and competing with retail pay to get them. The moment you find someone who gets you, better-paid work is one advert away.
• Social workers doing sums before safeguarding. Most are stretched and doing their best, but it still feels like your worth is being calculated in pounds.
• Over-zealous monitoring. Reviews, reassessments, forms proving you still need what you were already assessed as needing. Treated as a suspect rather than trusted.
• An understaffed industry, and you pay the price. A home call that never comes because there wasn't a worker to cover it, so you're left stuck in bed, no medication, no help with no one coming.
• Not bad workers, but a whole system running on too few people. So you're left waiting in your care home bed, buzzer going, because there simply aren't enough hands on shift.

If any of this sounds familiar, you're not imagining it, and you're not alone in it.

The Roadmap Coalition is exposing something you probably already feel in your bones. Social care wasn't built around you. Instead of starting with what you actually need, the system too often tells you what you are allowed to have, squeezes your support into a tight budget, and gives you a different deal depending on which council you live in.

The Roadmap to Independent living Coalition is calling this out and has mapped out a plan to change that, putting the power back in your hands, working towards a future where care is free when you need it and built around your independence, not around what's easiest for the system.

Read more about the Roadmap.