‘Why don’t you ask grandma what sauce she wants with her fishcakes?’ I asked, trying (and failing) to hide my exasperation. Like every lunchtime, I was madly multi-tasking getting grandma’s lunch cooked, thinking about an email I was in the middle of writing, and stopping every few minutes to answer the incessant pinging of Teams messages emanating from my laptop. This qualifies as a lunch break for me: no break, and only one of us gets to eat.

My father was hovering at the kitchen door, hands behind his back, doing his best impression of ‘helping’ without actually doing anything.

‘She wants ketchup.’ Dad said.

‘No- tell her they’re salmon fishcakes. She only has ketchup with white fish.’

‘But she said…’

‘Just tell her.‘

‘Ok, she’ll have spicy mayonnaise. You were right, she says she only has ketchup with white fish.‘

‘Yup.‘ I said, as I hurried past him to get a tray.

A variation of this scenario has been happening a lot recently, my dad not helping and the carer mind-reading. I’m sure all carers will relate to this – knowing every single little thing, habit, like or dislike about the person they care for.

This knowledge is accumulated over years of close contact and intimate caring. Carers are vaults of knowledge for the ones we care for; I can tell you what grandma is thinking before she thinks it, what she wants before she’s told you, and the fact she won’t tell you what she wants. More importantly, I can tell you when she’s not well and pretending to be, when she’s in pain, faking being in pain or when the medication she’s been prescribed will not work (because it never has the past few times we’ve tried it).

Carers can also tell you what reforms are needed in the social care system and in the NHS, and what would make a real difference for all those who need care and their families.

Sadly, this knowledge is not power. More often than not, we’re ignored by doctors and medical professionals, underestimated by not-yet-carers, and sometimes even discredited by the powers that be – I guess we’re an easy target and we can’t fight back. The general public has a very binary view of who we are: we’re either benefit scroungers or heroes.

I wish it wasn’t so – I wish carers could share their experiences and ideas to get meaningful change. I wish we were listened to, valued and consulted on what matters to us – from treatment plans for our loved ones, respite breaks, and to policy changes. This missed opportunity to leverage our colossal collective knowledge is infuriating as it would be helpful for all the millions of soon-to-be-carers and for anyone who will need any type of care in their lives… which is pretty much everyone in the UK.

I guess I’ll keep sharing my experiences and thoughts into the online void, via this blog and my joint podcast with Katy Styles. I’ll keep sharing my story when asked and showing up however I can. That’s the only thing as carers we can do.

Perhaps I could take my mind reading act on the road and plant grandma in the audience as a stooge as a fundraising exercise… any other ideas, everyone?