30 June 2026
By Isaac Samuels OBE, SCIE Trustee and Co-chair of the National Co-production Advisory Group (NCAG) and the Think Local Act Personal (TLAP) Board
I’m Isaac. I’m a racialised, gay person living with severe fatigue and long-term mental health conditions, and for a lot of my life, I’ve also known what it’s like to not have enough money to do the basic things that should keep a person well. I’m telling you that upfront because it isn’t background information. It’s the lens I look through every single time I talk about care.
This week is SCIE’s Co-production Week, and the theme is ‘Care equity: who gets care?’. I’ve been asked to help open up that conversation, and I want to do it honestly, not as a polished case study, but as someone who has actually lived the gap between what good care is supposed to look like and what it’s often handed to you instead.
An open reflection: I haven’t always got the care I needed
I want to say this plainly, because I think plainness matters more than polish here. I have not always had really good care. Not because I didn’t ask for it, not because I didn’t try, and not because I didn’t deserve it. I haven’t always had it because of the inequality that exists, plain and simple.
When I think about what has actually got in the way over the years, it’s rarely one big dramatic moment. It’s an accumulation of smaller failures that, stacked together, become exhausting in a way that’s hard to explain to someone who hasn’t lived it.
It’s having to explain, again, that severe fatigue isn’t laziness, and watching a professional’s face change when they realise this is going to take longer than the appointment slot allows.
It’s being a racialised person, talking about my mental health and feeling the room shift, like I’ve confirmed something instead of shared something.
It’s being LGBT+ and not knowing, walking into a new service, whether I’ll need to come out again, explain myself again, or just quietly leave parts of myself at the door to get through the appointment.
It’s poverty, deciding things that should never be financial decisions — whether I could afford the bus fare to get to an assessment, whether I could afford to take the unpaid time off to attend it, whether I could afford to keep chasing a system that wasn’t designed with someone like me in mind.
None of these things, on their own, would necessarily stop someone from getting care. But together, they add up to a system where your postcode, your race, your bank balance, your identity and your health all quietly decide how much support you’re going to get, and how hard you’re going to have to fight for it. That is inequity. It has a cost, and I have paid it more times than I can count.
What good care actually looks like, when it works
There’s a set of “I” statements from Think Local Act Personal’s Making It Real framework that I come back to often, because they describe something so simple it almost feels radical to say out loud:
I can live the life I want and do the things that are important to me, as independently as possible.
I am treated with respect and dignity.
I feel safe and am supported to understand and manage any risks.
I am supported to manage my health in a way that makes sense to me.
I have people in my life who care about me — family, friends and people in my community.
I am valued for the contribution that I make to my community.
I have a place I can call home, not just a ‘bed’ or somewhere that provides me with care.
I live in a home which is accessible and designed so that I can be as independent as possible.
None of that asks for anything extraordinary. It’s just what a good life looks like. You can read the full framework on TLAP’s hub: Making It Real, Think Local Act Personal.
And yet for so many people, especially people who carry more than one of the identities I’ve described above, even these basics aren’t guaranteed.
Why I’m inviting you into this conversation
I’m not sharing this to make anyone feel guilty. I’m sharing it because I think real change only happens when the people who’ve been on the sharp end of a system are sat at the same table as the people who design it, and both groups are genuinely listened to.
That’s what co-production is supposed to be. Not a focus group. Not a box-ticking exercise where someone with lived experience gets fifteen minutes to share their story and then watches the room move on to the “real” agenda. Co-production is when people with lived experience help shape what happens next, properly, with power actually shared.
So that’s my invitation to you this week: come into these conversations properly. Bring your discomfort if you have it. Bring your questions. Bring the bits of your own experience you’ve never said out loud in a professional setting before. This week only matters if it changes what happens after it ends.
Where I’m seeing the evidence base catch up
One of the reasons I have hope is that the evidence is finally catching up with what people like me have been saying for years. SCIE’s Care Equity Evidence Hub brings together research and analysis on exactly this — how inequity shows up in who gets access to care, what that care actually looks like once you’re in the system, and what outcomes people end up with.
It’s organised so that practitioners, commissioners and policymakers can actually use it, rather than it sitting in academic papers that are hard to access, and it’s been reviewed by SCIE experts. That matters, because you can’t fix what you haven’t properly named, and for too long, inequity in social care has been treated as anecdote rather than evidence.
What I’m hopeful about is something simple: that we get to a place where more people get genuinely better outcomes from care, and that those outcomes stop being decided by your postcode, your ability, your race, your sexuality, your income, or how good you are at navigating a complicated system. Good care shouldn’t be a postcode lottery, or a reward for resilience. It should just be there.
My call to action
By the end of this week, I’d love for you to ask yourself one honest question: what is one thing you’re going to do differently because of what you heard?
Not a vague intention. One decision you’ll share. One barrier you’ll personally remove. One voice you’ll bring into a room it hasn’t been in before. One piece of evidence from the Care Equity Evidence Hub you’ll actually act on, not just read.
Conversations matter. But they’re not the destination. Action is.
I hope you’ll join us.
