Friday, January 27, 2012

'Defeating Dementia' Report Launch

Oh my, what a week this has been!

Wednesday saw the official launch of a report entitled 'Defeating Dementia' which was commissioned by Alzheimer's Research UK. Mike and I had been invited to attend the launch in Westminster and had planned another trip to the British Museum for the morning followed by the launch in the afternoon to maximise our time in London. Anyone wanting to read the full report can download form the ARUK website.

Obviously ARUK wanted to get as much publicity for the event as possible and so there were numerous press releases issued, one of which focussed on my region and so my name was included as one of their Champions who would be attending. There were 6 other Champions there, all in different regions so lots of publicity there too. As a result of this the phone hardly stopped ringing on Tuesday!

As there was an embargo on the release until launch day, I did a pre-recorded interview with Danny Pike from BBC Sussex and Surrey, who I've spoken to several times before and he asked me for a follow-up interview the day after the launch too. Thanks Danny. Then there was Arrow fm with Lorraine White and there were arrangements to be made for an interview with Meridian, our local TV station on launch day itself. Phew!

In the midst of all this there came another call and this was totally unexpected!

It was Sue from ARUK to say that Sir Terry Pratchett's office had called to say that he might not be able to come to the launch. He was going to be part of the panel of experts and I was disappointed when I heard this as I'd been looking forward to speaking with him. Then she threw in "I know this is a lot to ask but........." they wondered if I would consider filling his time slot. It wasn't definite and they still hoped he'd be able to come but they needed a contingency plan and they thought that my mum's story would give an extra dimension to procedings, which were largely about research and lack of funding.


After I'd finished laughing at the concept of me speaking in place of TP I said that of course I wouldn't mind as I don't mind speaking to a large group. At that time I had completely blanked from my mind the fact that 150 people had accepted their invitations and the audience would include 50 of the leading research scientists specialising in dementia, MPs and representatives from age-related research and charities. Anyway, it was only a contingency plan. Later that day I received another call to say that they had confirmation that he was going to come so I could stand easy but could I please still be prepared just in case.

As we got on the train on Wednesday morning I was looking forward to the day ahead. I had to leave the phone on just in case ARUK called about the interview with Meridian TV which was originally planned for the morning but was done at the venue in the end. The full story is here and includes footage of Jamie, who suffers form early-onset Alzheimer's, and Vicki Graham with a few words from me later on - Defeating Dementia launch. The actual interview took 10 minutes so they only used a snippet but it was a good overview.

I was sitting on the train doing a crossword puzzle when the phone rang. It was Sue. TP couldn't make it after all and would I still be able to speak in his slot? Gulp! Yes, of course I would. Gulp!

I'll have to write about our trip to the British Museum another time as I took loads of photos and it was wonderful. After lunch we headed off to Westminster and were glad we'd arrived early when we saw the size of the queue. You have to go through strict security to get in, for obvious reasons, and it's both nerve-wracking and comforting to see Police officers with guns on guard.

They'd reserved a seat for Mike on the front row so I could see him, which was nice. The napkins came home with us with some scrummy cakes wrapped inside which we ate on the train as we had to leave promptly after the event.

I looked at the table at the front of the room and there was my name 'Susie Hewer, ARUK Champion' sitting next to Prof Alistair Burns (National Clinical Director for Dementia, National Health), Rebecca Wood (Chief Executive ARUK), Prof Julie Williams (Prof of Neuropsychological Genetics, Cardiff University - Among her most important work is the discovery of susceptibility genes for Alzheimer’s disease – findings highlighted by Time Magazine as among the top 10 medical breakthroughs of 2009). Gulp again!

The panel was chaired by Shelagh Fogarty of BBC Radio 5 Live.

As I watched the room fill up I read through the guest list and then stopped because there were so many influential people in the audience and they were going to be listening to me. It wasn't talking in front of a crowd that troubled me; it was that when I tell mum's story I have to delve into the depths of the memories that I keep buried because they are too painful to remember. Sometimes something bubbles up to the surface when I'm speaking and catches me unawares so I have learnt to take a deep breath when that happens.

With a time limit of 10 minutes max for my speech, I'd been thinking about tailoring it to suit the audience and including some of mum's strange behaviour and the psychotic incidents and thankfully I managed to get through them without incident; although I did have to take a long pause when I recalled her saying the we should take her out and shoot her or put her in a home because she was getting more and more muddled. I didn't dare look at my fellow Champions as I knew that they would be reliving their own stories as I spoke.

From the look on Alistair's face, I must have been saying something serious when this was taken. I see that I was using my hands to illustrate a point which is something I always have to try and control.

What finally got me was when I was talking about mum's last few months spent in the nursing home and when I sat down I really struggled to hold back the tears. Mike said that my speech was really good and very powerful and that my genuine grief at the end really brought the issue home.

Several people commented afterwards that they were very moved and ARUK said that others felt it had given the report context and brought the event to life. The lady who is talking to me here made a point of coming over to thank me. She said she'd heard me speak before and that she works in geriatric care and appreciated what I'd said because sometimes she finds it hard to deal with the very challenging behaviour exhibited by some of the patients.

So from now on I wish to be known as Susie Hewer, understudy for Sir TP! Can you imagine how disappointed the audience must have been though, thinking they'd be listening to him and then ending up with me?!!!!!

In this line-up we have Rebecca, Julie, Julian Huppert (MP for Cambridge), me and Shelagh Fogarty. She did a brilliant job of chairing the meeting and made a big fuss of my marathoning and fund-raising antics when she introduced me, which of course got a few laughs! We had a long chat afterwards and she took down my details for future use on her radio show which was excellent. We also discovered that she is originally from Liverpool and was born only a stones throw from where Mike grew up. Small world.


Shan said...


But, it's great that they wanted the human element of your mum's story.

Now I'm wondering what happened!

Susie Hewer said...

It's all there now Shan!

Shan said...

Oh, I got so emotional reading this. I didn't like that line about 'taking her out back'...people talk like this all the time, joking around, but when it's your mum I can just imagine the horror you felt.

Good for you, for standing up and speaking to all those people, exalted and otherwise. I guess when you are passionate about something, talking about it in front of a crowd is a little easier.

Well done Susie! (I like your smart outfit, too.)

Linda said...

Congratulations Susie. I cried just reading your post. I'm sure it was a brilliant talk you gave and I would have been in the audience blubbering away.
A reminder of how much I have to be thankful for. We've just been through a bout with my Mum - not Alzheimer's - and we, my 4 sisters and I, remind ourselves how fortunate we are to have her with us still.
Well done -

Susie Hewer said...

Thanks ladies. It's always very emotional when I have to talk about dementia and how it affected my dear mum.