#MyNameIs not being invited to #NHS14Expo on #NHSChangeDay to talk about #dementia

One of the more nauseating aspects of #NHS14Expo were people asking me as usual why I hadn’t gone to #NHS14Expo.

It’s quite simple.

I wasn’t invited.

I had a chat with Martin Rathfelder, the Director of the Socialist Health Association, about it. I’m currently on their Central Council.

Like one of my followers @RoyLilley, I have a vague interest in English health policy – as evidenced perhaps by my 300 blogposts on the matter this year?

“You would have loved it Shibley! You should’ve come!”

Arrggghhh.

But then Martin suggested a number of routes by which I could legitimately come next year – one of them was joining a CCG, or becoming a NHS Foundation Trust governor.

I do have a cursory interest in postgraduate medicine, and have in fact written some books on it.

Martin also suggested I could capitalise on an interest in long term conditions.

As is well known, I survived a six week coma due to meningitis in 2007. That’s how I became physically disabled. I’ve been in recovery from alcohol ever since, and successfully regulated (and rehabilitated) by the Solicitors Regulation Authority who oversee lawyers.

Martin also suggested dementia as an inroad.

I have an interest in this too.

My paper in Brain in 1999 was the first to explain the symptoms of frontal dementia.

It has been quoted over 300 times by major labs.

It’s even in the current Oxford Textbook of Medicine in their chapter on dementia.

My pal Prof John Locke politely suggested that, as I had actually done a MBA, I was more than capable of marketing my own book.

In fact, in that MBA I also did come top of innovation in the year (though I did come top of both domestic and international marketing too).

Or is it because I am a total social recluse?

Tell that to my 11.7K followers on @legalaware, including David Nicholson, NHS England’s CEO.

David’s Twitter is @DavidNichols0n and his colleagues Clare Gerada (@clarercgp) and Alistair Burns (@ABurns1907) who also follow me.

Tell also fellow followers @helenbevan and @JoeMcCrea1966, two of the principal architects of #NHSChangeDay.

Or is it that I didn’t do a pledge for #NHSChangeDay?

No – I did a pledge. It’s here.

I’ll think about Martin’s advice.

On a happier note, I’ve been given a desk to do my research questionnaire on perception of #G8Dementia at a one day conference in Scotland.

Glasgow of course was where I was born. I like their dementia policy too.

And they’ve given me a chance to talk about my evidence-based book on living well with dementia – it’s here, and my marketing opportunities are non-existent.

Of course, I wasn’t actively excluded.

And one final note.

My book on ‘Living well with dementia’ is here – go and buy it, I beg you! Pleeeeeezzzzzzzzzz

Rant over.

A week to go

The numbers are very tight because of the venue in Camden.

Do you remember when you used to prepare Cocoa Pops cakes for kids’ birthday parties? Yes, it’s at least that level of excitement and more.

cocoa pops cake

But I am now extremely excited about our private get-together to talk about issues raised in my book ‘Living well with dementia‘. Thanks to Amazon (at last), this book for the time-being is available to order for next-day delivery.

Not being invited to my private book launch, however, has absolutely no significance.

The venue is very small, and it’s been very difficult co-ordinating it thus far.

The guests are: Beth Britton, Charmaine Hardy (and sons), Darren Gormley, Edana Minghella, Gill Phillips (‘Whose Shoes’), Rachel Niblock, James Murray-White, Jo Moriarty, Lee, Lucy Jane Marsters, Margaret Kilby, Marian Naidoo, Mike Clark, Neil Chadborn, Dr Peter Gordon, Shaun Naidoo, Simona Florio, Thomas Whitelaw, Vidal Andreas, Amanda Ramsay, Gillian Nineham, Shirley Ayres, Zoe Harris, Ken Howard, Sally Marciano, Jane Samuels and Tony Jameson-Allen.

I’ve never met some of my guests, but I know them all well through Facebook or Twitter.

It has the feeling of a wedding reception in fact.

I wonder if I should get some special badges for what is effectively a #tweetup?

badge

Indeed, I am looking forward to thanking Charmaine in person for permission to use the photography of her poppy – which was chosen by my publishers out of the ones proposed to them.

I’m also hoping Dr Mitul Mehta and family will be able to ‘drop in’. Despite being a Senior Lecturer at the world-famous Institute of Psychiatry, in their neuroimaging division, Mitul found my discussion of the problems in early cognitive diagnosis of dementia helpful. I also made him read my book recently!

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I am excited that Tommy Whitelaw has accepted an invitation to come from Scotland. The distance is perhaps prohibitively long, but in any case I will be massively singing Tommy’s praises. Tommy is genuine. And he’s also a Glaswegian! An amazing contributor, who’s made a massive paradigm shift through his groundbreaking work with Alliance Scotland.

Norman McNamara, in the spirit of all good awards ceremonies, ‘can’t be there’ (the distance from Torbay is prohibitively long.) Nonetheless, Norman is recording a message on YouTube which I hope to be playing in our book launch. It’s impossible to give an account for Norman’s unique accomplishments in this area.

Not only has Norman got a huge amount of organic goodwill and love for his ‘Purple Angel Ambassadors’, but Norman has brought about a discussion on the potential merits of GPS trackers to mitigate against wandering. Whatever one’s precise views, which tend to be always sophisticated and deeply felt, this debate is much needed in my view. I am trying to make suitable arrangements for Purple Angels themselves to be represented in person.

It would be very early for Kate Swaffer to ‘Skype’-in, for Sunday morning her time in Adelaide. I am thinking of recording message by Kate especially for my guests. Kate, living with a dementia, is one of the most well liked and respected advocates for dementia internationally.

I bought today my own book “Living well with dementia” at a bargain price from Primrose Hill Books

I got a bargain today.

I have been quite a good mood recently, getting ready for my book launch in Camden on the afternoon of February 15th, 2014. We’re all going out for dinner in Pizza Xpress later that evening, somewhere in Central London.

shibley rahman living well with dementia

I bought my own book ‘Living well with dementia’ from Primrose Hill Books for the very much discounted price of £16.99.

This is not because it was a soiled copy, or because I was the buyer.

It was because they had ordered it in especially from the wholesalers, and managed to sell it onto me a very much reduced price.

Receipt 2

Of course I am very grateful, as I think it’s important to support local independent booksellers in the community.

Here’s a good piece from last year on ‘five reasons to support your local indie bookseller‘.

Here are the full details of ‘Primrose Hill Books’. They’re on the main road which passes through Primrose Hill. This book is called Regents Park Road.

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Nonetheless, I appreciate that some people will prefer to use the bigger well known book retailers, especially if they do not time to browse or travel to such bookstores.

After a bit of haggling, we got Amazon this afternoon to reduce their delivery time from 9-11 days to fewer than 24 hours. This is of course a huge result for me. Their page on my book is here.

Book cover

The Blackwells Bookstore is normally a good place to find the book for immediate delivery, but not at the time of writing this blogpost. The book is currently out of stock, but I do know reliably they had a good stock once upon a time. Here is their page.

But Primrose Hill Books will always have a special place in my heart. I’ve bought books there I’d never have ordered on Amazon, for example, through browsing.

It’s run by Jessica and Marek (and Kelly is often there too). All three have an enclopaedic knowledge of current books, some well known, some not so well known.

Of course, it was a source of great pride to see my book there. I’ve published specialist textbooks, but not the type which would look in place in the bookshop above or any other high street bookseller.

Here’s Jess looking at the book.

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She said it was a good book, and we had a discussion of how long it had taken me to write (a year),  how this had become a real passion of mine to share this information and to dispel all the scientific misinformation about dementia, and how it was written in the style of a long blogpost but it actually contained a lot of interesting contemporaneous evidence and discussion.

It is of course a bit weird to see the book alongside classics such as Ben Goldacre’s “Bad Pharma: How medicine is broken, and how we can fix it” and Naomi Wolf’s “Vagina”. But hey ho.

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You can buy the book from the publishers’ website too.

Their is their official flier. You get 20% off if you use the promotional code ‘AUTHOR20′. You enter this code apparently just when you are completing the ‘checkout’ in this e-bookstore.

And finally, one of the people I genuinely admire the most is Tommy Whitelaw (please support Tommy at “@tommyNTour“).

You can read about Tommy’s campaign for giving carers ‘a voice’ on my blog here. His story continues to motivate me very much – and not just because he’s a Glaswegian like me!

Tommy is very honoured that his campaign and letters in Sally Magnusson’s Book “Where Memories go”.

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Hopefully the episode where Sally talks to Tommy in “Medical matters: caring for carers” will be made available on the BBC iplayer shortly.

And finally – here’s Sally’s book on the Hodder website.

All in it together, and all that.

Twitter’s telling me some of you have received my book at last!

Thanks to Rhona Light (“@Hippiepig“) for giving me feedback on my book. She was the very first to receive it.

FRONT COVER

Rhona’s copy of her book arrived yesterday.

Thanks also to @KateSwaffer for her supportive comments about my book.

And Rose got it too (@RoseHarwood1):

If you buy the book off Amazon, please remember not to buy it directly from them or you could be waiting 9-11 days. Here’s the link to the book on Amazon. I bought it today from “The Book Depository” as my complimentary copies hadn’t arrived. But I know it’s selling well. Yesterday it reached #3 in the UK. No3 And I was honoured to receive this tweet from Prof Simon Wessely, who is at the Maudsley/Institute of Psychiatry, and President-Elect of the Royal College of Psychiatrists.

I’ll be presenting the book to 25 guests in private in Camden on Saturday 15th February 2014. This includes of course Charmaine Hardy whose poppy is on the front cover:

Thanks a lot to Pippa Kelly too (@piponthecommons)

And I look forward to going out for dinner with them in the evening in Holborn.