Liberal Democrats My new book comes out tomorrow - read an exclusive preview



<[link removed]>



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…





“A Happy Son”



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…



Order 'Why I Care' today ➜
<[link removed]>



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.



Order 'Why I Care' today ➜
<[link removed]>



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.



Order 'Why I Care' today ➜
<[link removed]>



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.



Order 'Why I Care' today ➜
<[link removed]>



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.



Order 'Why I Care' today ➜
<[link removed]>



Thank you for your support now and always.

With thanks,





Ed Davey MP
Leader of the Liberal Democrats
(he/him)





Did you like this email?
Yes 😀
<[link removed]>
-No 🙁
<[link removed]>
View email in browser
<[link removed]>


You're receiving this email because you have signed up for our emails.

Want to change the kind of email you're getting? Update your email preferences

<[link removed]
0AB&id=0033z00002pr9VrAAI>

Don't want to get our emails anymore? Click here to unsubscribe
<[link removed]>
.

Published and promoted by Mike Dixon on behalf of the Liberal Democrats
<[link removed]>, 1 Vincent Square, London SW1P 2PN.