Day 1 of the Annual Alzheimer’s Society Research Conference..

I was travelling to the conference in Bristol from Trowbridge as I’d stayed with friends overnight, so I was only 30 minutes away today thank goodness – as opposed to my nightmare journey yesterday – it took me 7 hours due to signal failure which led to me missing my connections 😰Luckily I had a wonderful train guard on the second train who sat down and worked out a new timetable for me AND printed me a copy AND revalidated my ticket so I could travel on different trains – HUGE gold star to Virgin east coast trains for sorting me out.

I digress yet again……I arrived at the Bristol station a tad late (due to the train being delayed🙄 but I soon saw the nice blue sweat shirts of 2 lovely Alzheimer society girls who’d kindly waited for me at the station.We ambled to the hotel chatting and they sorted me out with everything and got me in the right place – BIG thank you to Ruth and Katherine😊

Matt Murray started off the first session with a talk about his User Involvement role.

image

How would you define ‘User involvement’ – Making sure what is said is listened to and actively involved. We all gave other definitions of ‘involvement’.

He used a lovely analogy – of boats – not only involving people in the steering and rowing but also in the building of the boat – he always encourages managers to ask ‘ what would be the benefits to that service if they used someone with dementia?’ – perfect😊

He spoke of the aim being to make involvement less about London and more about your local environment – again,perfect and to involve people who are less often heard – more diverse involvement, which is challenging but far from impossible.

We then had table discussion about what has improved in the last 5 years and what works well; also how we can improve people affected by dementia in the work of the Alzheimer’s society.

We had so much to say that we ran out of time and I was so involved, I stopped typing! I made some new friends from Northern Ireland, which was nice…………

Matt celebrated some of the achievements so far in including people with dementia across the society which is now getting far better than it ever used to be.

Moving away from ‘doing to’ or ‘doing for’ people with dementia towards ‘doing with’ as co-produces. A great start to the conference…….

Next up was Dr Clare Walton talking about the latest in clinical trial – where are we in the search for new drugs – quite pertinent for me as I head towards the end of my clinical trial as I’ll be looking for a new one………..

image

Clare talked us through the Drug discovery pipeline which can take up to 15 years…….😳
That’s the downside for those of us with a condition like dementia.

Solanezumab – a drug undergoing testing last year was shown to have failed but when they looked at the data again, they found it can have an effect if given earlier enough – Eli Lilley have gone back into testing to see if given earlier enough will help- the trial comes to an end in December but it could be another 18 month before it gets approved – another bummer of a wait……

There was an interesting discussion around ‘When should we give treatment?’ –  on the preclinical and predromal stage in order to stop dementia developing in the first place.
The newest trials about to start are to stop symptoms appearing but will only recruit people with certain gene type which will be interesting for recruiters as people don’t know their genotype. It will be an interesting one to watch due to the complicated ethical issue – would you want to know your genotype if you knew you could take part in the trial………..?

There are 17 trial drugs trials due to come to an end in the next 5 years so watch this space………..

After the much needed tea break – I missed out when we arrived as I didn’t see the tea!! 😱 – we were altogether in the main room for the Research Network Business meeting. They sat us in our regions so the A team of Yorkshire were all on one table

The 'A' Team from Yorkshire along with Matt who was made 'honourary Yorkshireman' for the session😊
The ‘A’ Team from Yorkshire along with Matt who was made ‘honorary Yorkshireman’ for the session😊

Anna Grinbergs-Saull ran this session – the last of the day before we could collapse in our room for a while before the Poster session and supper…….

Colin Capper – spoke about the society strategy for 2017-2022 – the society want a New Deal on support, a New Deal for society and a New deal on research so hopefully major commitment to making improvements.

Dr Doug Brown spoke of the scale of the challenge of raising the money needed AND how it was really important to get the branding right.
“The personality of the society” is important was a very telling statement as I’ve been saying this for ages.
“Our brand is no longer fit for purpose as we’re not bold enough” – so refreshing to hear from Doug. The new brand will be launched internally in September and externally early in 2017…..

It was 4 o’clock when I realised I was very tired and had brain shut down😴😴😴😴

After a mission to find my room, it was nice to sit in silence before the buzz of the Poster session. The most intriguing for me was on Gait and Dementia as my manner of walking has changed dramatically and I’ve never understood why……..need to do more reading on this!

image

I met up with the lovely Dr Mel Hall from Sheffield and we shared stories of Billy and her new puppy, who is adorable. I left after the meal and awards were out of the way as I was running on empty and the noise was now just blurring everything.. Mel was so kind and thoughtful enough to give me her number in case I needed someone in the night. I almost had to ring her straight away as I got lost finding my room and ended up in the gym🙄………luckily Mel was spared sending the search party as a member of staff came along and redirected me………

A good but exhausting day……….Looking forward to Day 2………

Advertisements

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s