Friday, February 7, 2014

A Onesie Update, but in several parts - part 1

Yep, the title is certainly tongue in cheek as I won't be able to get everything into one blog post. There is so much stuff stored up in my memory and in photos that I just have to make a start and get some of it onto my blog or it will get lost in the mists of time!

Things will not necessarily be in the right order.

Dinner at The House of Lords


Yes, I did type that correctly. Earlier this week I was invited to contribute to a dinner discussion about how we can overcome the stigma of dementia. It was instigated by Baroness Sally Greengross who is Chief Executive of the International Longevity Centre - UK. I have met her several times and she is a really lovely person.

I joined fellow Champions Vicki Graham and David Read together with Rebecca Wood (Chief Executive), Dr Simon Ridley (Head of Research) & Dr Matthew Norton (Head of Public Affairs) from Alzheimer's Research UK (ARUK).

The guest list was extraordinary with some luminaries in their field of expertise in areas such as  dementia research, mental health, neurology, care, age related diseases & behaviour, together with representatives from other related charities and a few lay people who have experience of dementia.

But before I get there I have to show my journey into London as that's all part of the story. As it was an evening event ending quite late and we live out in the sticks it was decided that I should stay overnight in London so, although I was excited by the event, it was with heavy heart I bade goodbye to Mike and the animals and headed off to the big city.

At the moment there is an ever-present threat of train cancellations due to the horrible weather we've been having. I knew that there had been disruption on our line for a few weeks so I was very relieved to find that the train was only 7 minutes late. (Remember that for the return journey!)

The station looked much better than 2 weeks before when I'd headed into London for a Supporters Day with ARUK - details will appear later on my blog.

My hotel was only a 15 minute walk from the railway station and just 10 minutes away from the House of Lords so was well placed. The rain had abated for a while so I didn't get drenched and soon settled into my room. I'd brought lots of relevant reading material with me and so I had a coffee and catch-up so that I was well prepared for any discussions. Then it was time to get ready and head off to meet the team from ARUK at st stephen's tavern for a pre-dinner briefing. I'd chosen the same outfit I've worn on several occasions when I need to feel confident and I managed not to burn myself with the curling tongs this time.

Pre-event selfie
I took these photos as I walked over the bridge and they seem a bit blurry, probably because my hands were a bit shaky after too much caffeine!

The magnificent Houses of Parliament
Looking along the river Thames towards Charing Cross station (I think the blurriness makes it look like an Impressionist painting!)
Big Ben with fast-moving traffic
Upon arrival at the House of Lords we passed through the security checks to the Cholmondeley Room which are approached by via a courtyard.

I loved this wonderful ceiling but I can't remember what this style of feature is called
Entrance to the Cholmondeley Room
There were pre-dinner drinks but Vicki and I were more interested to learn who would be on our respective tables. There were quite a few names I recognised on the list and was able to catch up with during the evening (June Andrews and Clive Ballard who I met when we did a presentation at the Wellcome Collection back in 2010 and Prof Alistair Burns who I met at the ARUK Defeating Dementia Report Launch in 2012). You may recognise my outfit in both those posts!

I think I must have been seated with some of the most interesting people in the room. On my immediate left was the Rt Hon Tony Baldry, to my immediate right was Bob Woods, Professor of clinical psychology of the elderly at Bangor University, then there was the Rt Hon Hazel Blears (whose own mother suffers from dementia and who has recently launched a campaign for better care), Hilda Hayo (chief nurse for Admiral Nurses who provide care for people with dementia), Dr Heidi Larson (from the London School of Hygiene and tropical medicine), Prof Peter Piot (from the London School of Hygiene and tropical medicine) Prof Clive Holmes (professor of biological psychiatry),  Jessica Watson (from the International Longevity Centre UK) and another man who was from the Wellcome Trust but I can't remember his name and he didn't speak much anyway.

Amidst all of these amazing people was me.

Oh my!

I'd prepared a handout about my mum together with what I want to achieve in breaking down barriers in dementia research and a few of examples of my own experiences of stigma towards her illness. I tried not to be overwhelmed by their credentials and handed it round and everyone took a copy but I do wonder how many would have read it - except I know that at least 4 people did 'cos I watched to see if they did and several of them passed on some useful contacts for which I am very grateful.

Some of my experiences of the stigmatisation of dementia include:

- people stopped visiting us because they were uncomfortable with her strange behaviour.
- going to public places became increasingly  difficult and I remember we were "shushed" on one occasion because mum kept asking when we'd be going home.
- people have said to me that dementia only affects the elderly and they've had their life already so it doesn't really matter.
- "people with dementia should all be put in homes out of the way" (spoken by a former work colleague).
- "she should have kept active and done crosswords then she wouldn't have got it" (actually she did both!) spoken by far too many people.
- when searching for a care home and discussing mum's condition I was told by one care home that they didn't accept people like mum who were "so far gone".

There were short talks by different people about how and why the stigma of dementia has developed and what they believe to be the way forward; for example a lady whose father has Alzheimer's and lives in a dementia-friendly community (I wish they all communities were like that!), a neurologist & a dementia nurse.

The one whose speech gripped my attention though was by Prof Peter Piot who on the face of it was an odd choice given that his PhD is in microbiology - until I heard him speak. He championed the cause of people suffering from AIDS and I was fascinated by how he spoke about breaking down the associated stigma. I was honoured and humbled to be able to speak to him afterwards and he gave me some helpful advice and ideas. Sadly he and Heidi didn't stay for the full evening as they had come straight to the dinner from their flight from Bangkok and were weary from their journey.

During the meal there were also other speakers but it wasn't always easy to hear them as people were also talking amongst themselves. After the meal we were served coffee and a little cardboard box with 2 truffles inside and I took mine home for Mike.

We had been issued with a questionnaire beforehand to give our own thoughts and experiences of stigma and our ideas will be gathered into a report to take the issues forward. I came away feeling very positive that we will eventually break down the barriers.

On my way back to the hotel I snapped the London Eye and County Hall building illuminated beautifully with a bright blue light. So pretty.

The next morning I was up at 5:30am and went for a lovely walk along the River Thames before heading back for breakfast. My train ticket was what is referred to as 'off peak' which meant I couldn't travel until later in the morning so I'd take some knitting with me to occupy the time.

It was beautifully bright as I walked along the river to Charing Cross station.

The glass arch is part of Charing Cross station
I can never resist taking a photo of the beautiful bark of the London Plane trees - it's just like camouflage fabric!
Taken on the walkway towards the station - I love seeing nature fill every available space - nature abhors a vacuum
The Houses of Parliament and Big Ben
Sleepy pigeons sunning themselves
I've always loved this building (it's the turrets) but I don't know what it is - possibly MoD?
Upon arrival at the station I thought it seemed rather busy for mid-morning. Then I caught the announcement and saw the red screen - due to a landslip between Battle and Robertsbridge the 10:15 train home had been cancelled as trains had stopped running after 7:30am and to listen for announcements.


Coffee and chocolate were required.

Thankfully the next train was not as long in coming as I thought and at 10:45 I was heading for home and managed to get in just before the torrential rain started again. However, the problems on our line are scheduled to cause disruption for several weeks so the train service will be unreliable for the foreseeable future.

Onesie Update Part 2 will follow soon.

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