Dear John,

I am so excited to say that my book, “Why I Care, and Why Care Matters”, comes out tomorrow.

Writing this book was a deeply challenging experience, especially emotionally.

Yet, in the process, it also made me feel incredibly lucky. Lucky to have had the loving family I cherished then, and the wonderful family I am blessed with now.

And I feel profoundly lucky to have this platform, this opportunity, to raise these issues that are so important to me.

Ahead of tomorrow, I wanted to share a preview of a really special chapter…

Emily and I went into Kingston Hospital on a cold and wet Wednesday in November 2007 and came out on cloud nine. John is named after both my dad and Emily’s, and his middle name is Alban, after my grandad, Alban Henry Stanbrook.

It wasn’t a seamless birth, ending in an emergency C-section. Anyway, who has ever had their first baby and come out thinking, ‘Yes, that went well’? John’s first three months were so exciting and strange. I loved that magical cocoon you create around a new baby…

By the time John was about six months old, the things he couldn’t do were mounting up. He couldn’t roll, he couldn’t sit, his hands wouldn’t open.

We knew what average development looked like at this age, but we persuaded ourselves, and each other, that it was all OK. Averages are called that for a reason, after all. There will always be some people on either side of the line. Besides, how much is it a cultural decision, that children should be doing X, Y or Z at a particular time? Maybe he was just swimming against the tide.

With a degree in anthropology, Emily has an eagle eye for things we assume to be natural or common sense but are in fact just social construction and habit. We were beginning to get quite worried, but we thought it would be fine. It could be something, but it would be nothing we couldn’t handle. He was a happy baby, just a late developer, and we had so much fun with him.

At nine months, John failed what they called his health and development review. They don’t call it failure, but you get a fair idea of what they’re telling you.

We were then referred to a community paediatrician, with an agonising two-month wait, followed by another anxious wait to see a paediatric neurologist, who told us John’s provisional diagnosis was cerebral palsy. It turned out this isn’t his condition but, to be fair, many of his symptoms were similar to cerebral palsy at that age.

As for treatment, we were offered physio, with a seven month waiting list, occupational therapy, with a year-long waiting list, and speech and language therapy, with an 18-month long waiting list.

He was 13 months old at this point. We felt there wasn’t a moment to lose to figure out what was best for him, and yet we were being asked to wait his whole life, again, doing nothing.

The neurologist suggested a brain scan, which didn’t materialise until he was four, though in retrospect, we didn’t push hard for that because we were worried about him having an anaesthetic at such a young age. John’s community paediatrician has always been lovely and kind, but her main suggestion at this point was for us to rest him on a rolled-up towel.

We were thrashing around, getting alarmed and upset, trying to find a way forward. All the doctors seemed calm and matter-of-fact at this stage, but we were desperate to act so we tried a private physio. We weren’t very impressed, in part because health interventions work best when they’re joined up. That's why the NHS, when it works, is so good.

Sadly, it really wasn’t working for John, and these were such anxious times that I’ve almost blocked them out. But I can remember all the disaster scenarios that went through my mind.

We would never know the right thing to do, I thought. We were failing him. Now, when I meet other parents caring for a child with disabilities, I know exactly what they’ve been through, we understand each other so well.

Rarely is it immediately obvious with complex needs what the cause is, let alone the right course of action and the extent of its effectiveness. The clue’s in the name. Nobody can ever tell you, definitively, how much you can hope for; only what you should be prepared for.

But none of us who have come through it can ever find our way back to those feelings, because they were just so hard.

I read all the recommended books on cerebral palsy, and some unrecommended ones too. A list of ‘cures’ and treatments emerged, mostly more implausible than Mum’s naturopathy. From oxygen tents to brain operations, what looked like Soviet Space suits and, inevitably, electric shocks.

When conventional medicine decides a condition is incurable or cannot be diagnosed, the vacuum created pulls in every crank in the business. I couldn’t stop reading, but it wasn’t helping.

It’s a gradual process of understanding when you start on this journey. At first you can’t really comprehend how big the issue is, because you don’t want to. You think it will be temporary, that in a year or two all will be OK, then you discover it’s not, and it won’t.

Then there’s the slow realisation of just how much it’s going to change your life, and not in the way you’d envisaged with a gorgeous new baby. It’s probably better like this. But that dawning, over a period of time, that John was severely disabled, and wasn’t going to suddenly get better, was tough.

One of the metaphors you sometimes hear parents of disabled children use is of a much longed-for holiday: you’re having a baby and you think you’re going to Venice to have a wonderful time with your new family. Then your plane is diverted, and you’re told you’re going to Brussels instead. It’s not what you bargained for and you’re both upset, disappointed and even angry.

But then you go for a walk, try some moules frites, and you realise it’s different, but it’ll be fine.

The topics within this book are tough, they reflect the harsh realities faced by carers in every corner of our country.

I have said before, I am deeply worried that the Government, and indeed the media, take every opportunity to avoid talking about care. If they can kick the can down the road, they will.

That’s why I’ve written this book, and why I will take every opportunity I can to talk about care.

Thank you for your support now and always.

With thanks,