Journey in photos…..

Saturday was the most glorious sunny day that I decided to take a bus ride to Hull and take photos on the way……Photos can replace a thousand words, especially for me since dementia decided to join me. I can’t remember the detail but the feeling around the story attached to photos seem to be there in abundance.

Sadly it wasn’t the usual double decker so the views weren’t quite as planned………but here’s the result….

A beautiful view of the blossom just coming out by the pond, while waiting for the bus…
The gorgeous clear blue sky with only a plane going to who knows where…
Trundling through the rolling countryside..
Through bright sunny villages..
To my final destination – the Poppies – Weeping Window in the centre of Hull – ” a Cascade of several thousand poppies seen pouring from a high window to the ground below”
So beautiful….

Launch of Dementia Friendly East Riding…..

What a lovely day I had yesterday…..I was on home ground at an event in Beverley. It was the launch of Dementia Friendly East Riding.
The DAA (local Dementia Action Alliance) was disbanded here last year due to lack of funding – another case of post code lottery, sadly. However, out of it came the determination by a few committed individuals to continue with the cause of making the East Riding a good place to live for people with dementia. They created their own charity and today saw the start of good things happening at last in the East Riding.

I was due to say a few words with Emma Williams about the building of the award winning garden last year. Gemma, my daughter was also going to be there to chat about involvement in research – bonus!

I arrived – by local bus instead of train! – to find Gemma there already setting up her stand. She was there in her own right as part of the local research team. It was being held at the local cinema, who also put on monthly dementia friendly films.

There was a lovely mock up of our garden with a new scarecrow …….😊

The Forget me knot flower competition was up for the public vote – the wonderful Sandra had been busy sorting out these many wonderful entries from children.

So many wonderful people are Trustees of this charity and lots came up to say hello and remind me who they were.🙄 Lots of other organisations introduced themselves, Age UK, Local Carers, University for Children, and Mandy many more….

We made our way into the auditorium and Nigel – former chair of the DAA introduced the morning.

“Dementia friendly East Riding didn’t appear from nowhere’ said Nigel.
He then introduced Emma Williams who used to be the DAA co-ordinator and who did such a lot for me when I first moved into the area. She told us about her dad, who has a diagnosis of dementia and how she came to be involved in making the East Riding dementia friendly. She was there for 18months before funding was sadly cut. She did an amazing job while she was here and continues to be involved as a trustee of the new charity.
The original group were determined not to let all the fabulous work they’d done go to waste so they formed there own independent charity – Dementia Friendly East Riding.

The new banner!

The aim of the charity is to give people good quality information and make people aware of dementia.
Inmans primary school at Hedon called ‘Memory makers’ were up next .. The 2 year 6 girls were there on stage with their mum and interviewed by Simon. Memory Makers came about through a Hull police lifestyle initiative – where pupils were encouraged to do something valuable in the long summer holidays.
Simon asked why they’d chosen to support a dementia charity – both girls have a relative with dementia.
They made fiddle mats – they did so many other fund raising activities. They bought lots of games and pamper items for the residents in the Care homes.
The girls want to go into Brownies and Youth clubs to raise awareness.
They were magic and we had a lovely chat over lunch……

It was then me and Emma. I spoke about the importance of being involved with the local community and the garden itself.

Beverley library service spoke after us.They’re trying to equip their staff to be dementia aware. Over 50% of their staff have received in depth dementia aware training.
Nigel spoke of how dementia awareness isn’t just about memory, but in everyday life – buildings, banking systems, and to do this we need to know more about dementia.
Next up was my Gemma. She spoke about how she got involved  in the field of dementia research and the importance of allaying fears and misconceptions. Her best line was around how it often involves visiting you in your own home and….
“Having a nice cuppa tea and a chat” – obviously my daughter:)😂

Finally Nigel spoke about the task of finding a patron. Someone who understand rural communities,. He then introduce the new patron, Howard Petch CBE. He was very funny.
He was ‘Aware that his senior moments, are coming with more frequency” – very funny intro of being stuck in his rocking and chair and not being able to get it started…….
His short speech was filled with wonderful analogies…..

There’s some really interesting projects in the pipeline. I hope t be involved in this years ardens at Burnby Hall and Castle Hill Hospital, but one which appeals to me most is the Photographic competition which will eventually tour the region – a single photo which depicts dementia. ……..more on that when it’s launched.

A wonderful lunch then followed in the local college restaurant – where the students practiced their skills of service and cooking – they all got a gold star from me…..lots of chat and reconnection made. I had to get a couple of selfies…..couldn’t resist.

Me with the lovely Sandra and equally lovely Simon…😊
Me and Emma😊

And finally……..

Me, after a lovely lunch feeling stuffed and exhausted but still with a smile on my face…..

Young Onset Dementia Network Meeting….

Yesterday, I was back down in London for the Young Onset Dementia Steering Group…..I wish I had a speeded up film of my travel this month as I’m sure it would make for hilarious viewing….

I woke up to an amazing red glow out of my back window…

There are many individual projects going on within the steering group and I’m part of the Research Strand led by Jan Oyebode from Bradford Uni. Our meeting was before the main one which allowed me to travel with my favourite train company – Hull trains – they’ve always been helpful and you have free wifi for the whole journey plus they also serve Yorkshire Tea so they’ve got a head start of the others….😊☕️

The venue, the Esmée Fairbairn perfect and within walking distance from Kings Cross.
I arrived to find Jan, Janet, Mary and Sarah already there. Sarah did ask the very strange question…….

‘Is everyone ok with water or would anyone like a cuppa’😳

As I say, strange question, but once my cuppa tea was in situe we began😂
We were saying how its so difficult for people with young onset to find all the research that’s happening. Not all researchers, of all types, promote on Join dementia research. It would be sooo useful if there was just one place like JDR…….

We hope to have a list of top 10 papers for each area of Young onset to go on the web site.

Any researchers who want to advertise their research and need for participants can contact the Network to advertise on the site.
Lots of interesting facts shared….

After a lovely lunch the room had filled totally and I couldn’t get everyone in one photo!

Tessa chaired the meeting and asked everyone to introduce themselves

New people were Laura Phipps from Alzheimers research UK, Jayne and Chris Roberts.
We also had Jeremy Hughes CEO and Gavin from Alzheimers society.

Laura filled us in on the wonderful media work that Alzheimers Research UK does – I remember they had a wonderful innovative animation out at Christmas………they’re very creative in the things they do.Very modern and up to date.

Around the room were many professionals from many arenas. We all have a common purpose – to improve the lives of people with Young onset.

Sarah gave an overview of all the good stuff we’ve achieved since November when we last met.

Tessa moved onto how to influence nationally. How each of us can offer a young onset perspective to all the variety of groups we belong to.
The ‘I’ Statement meeting were mentioned that Chris, Jayne and I were involved in on Monday.
Rachael Litherland from Innovations was sat next to me – havn’t seen Rachael for ages – since her baby was born, so it was lovely to see her again!
She gave an update on the Welsh Strategy. Welsh government have been very open to discussion.Lots of the work around their strategy is Rights based.

Sarah then went onto talking about her work with the DAA and seldom heard groups, of which young onset is one of many. Always making sure Young Onset dementia is mentioned in every arena is key. .
Janet talked about her visit to Japan. Emphasis there is on social care. There’s a huge focus on vocational rehabilitation from the Japanese government and they met Tomo who came to my house!!

Jeremy and Gavin from Alzheimers society were next. They were here to tell us what the society intend to do for people with Young Onset
What was learnt from the work done by Adrian when he was in post and who is sadly missed.
Everything Jeremy said was really promising and an ideal in theory, especially around linking their services with the NHS and being able to make Gp appointments but I need to be convinced of the ever present problem of consistency.The fact that many Gp surgeries having many different IT systems is a mammoth task to overcome.

Jeremy is very eloquent and passionate about the organisation but there’s this niggling doubt about the ability of some local offices to deliver the same message and this is where the majority of the work lies. Jayne also made the point about the already present difficulty in recruiting appropriate volunteers as well.
There’s so much needed to be done with education in the local offices around Young onset and so many changes needed. However I do applaud their ambition.
The objectives are huge, as they should be. Achievable? Time will tell…….

My brain started to go on a go slow and tea was needed……..but even tea didn’t do the trick… my notes are somewhat sketchy after 3pm…….

570 people have joined the Young dementia network since we started it, which is brilliant, and the web site is being updated and added to all the time so worth revisiting. Here’s the link:

The final session was an update from each work stream. I can’t believe the amount we’re doing and have done in such a short time. So huge congratulations to everyone especially Young Dementia UK for all their massive work.
I wasn’t looking forward to the journey home as I would have half my journey in the dark😱 which I really don’t like any more. I can’t see out of the window so never feel settled as I’m continually wondering where I am…..
When I got back to Kings Cross there was all the news everywhere about the shooting in Westminster which was very sad. But my train was on time so I was homeward bound……

Photo of the lovely ceiling at Kings cross because I know I won’t be able to take photos on the way home…..😔

BHiRCH Yorkshire Carer Reference Panel meeting

Yesterday saw me at my favourite university – Bradford. I’ve been involved with many projects there but don’t think I’ve been there for a while. Looking back through my blogs, I couldn’t find anything recently, so it must be ages ago.

Whenever I go to Bradford in the past, I’ve always bought my ticket at the railway station and then they immediately refund me on the day……….
Well, I havn’t bought my own tickets for ages and yesterday morning I frantically started looking round for my tickets and couldn’t work out why I didn’t have any😳
Luckily I always get up hours before I need to leave so I just sat and trawled though emails looking for clues……😩

I always keep the emails about an event until it’s passed and then I delete them all, so usually I have an email with the details of my train tickets and times……..that’s what was missing.

I then had to have a conversation with myself and what I did if I didn’t have tickets; how do I get them and where? I usually pick the pre ordered ones up from the ticket machine days ahead but I didn’t have an email with the code on for Bradford, so that wasn’t the answer………how did people get tickets if they didn’t get them from the ticket machine?
It suddenly dawned on me that the ticket office existed🙄….I had to buy my tickets from the ticket office………
Well that took me what seemed like ages to work out so I was exhausted before I even set off!!🙃 but I got there and worked it out thank goodness…….should have booked and collected maybe🤔……

I’m convinced this is what happens when others do things for you. Those fine threads of memory get more frayed each time someone performs the task for you until eventually they’re cut and the memory disappears for ever.. You’re then unable to do those things for yourself.

For the kindest of reasons supporters take over and do things for us but then are actually causing so many more problems for themselves. Enable us to do things for as long as is possible, even if it means finding a different way……..end of my sermon for today😂

Another case of ‘use it or lose it’ strikes again……..

Anyway panic was over so I got to the station and bought my tickets. Yesterday was a gorgeous day. The sun was shining over the Humber…..

It was then that I went and sat next to the lovely Ola Colin and his wife Lizzie who were also going to the meeting.. Colin has PCA(Posterior cortical atrophy)We chatted all the way to Leeds so the journey flew by.

Once we got off at Bradford we met the lovely Barbara Woodhouse Carlton! And trundled our way up to the University only to have it snow on us on the way up the hill😳🌨☃

And even more familiar faces when we got there, as also on the panel was Sandra and Geoff so I couldn’t resist the opportunity for a piccie….

Prof Murna Downs also appeared to say hello, so lots of smiley faces.

Barbara opened the meeting and we went round with introductions.

Katherine Froggart did an overview of the study to remind us why we were all there🙄

It’s a project based in Care Homes. It’s trying to see if hospital admission can be avoided. The aim is to help care staff to identify conditions, that if picked up early enough, will avoid the need for a hospital admission. The 4 conditions are:
Acute exacerbation of congestive heart failure, respiratory, Urinary tract infection and dehydration.
Looking at what staff skills staff need to be able to improve the healthcare of residents thus reducing hospital admissions, which in itself causes problems.

The research is across 14 care homes in 2 areas – Bradford and other northern areas and London – 2 very difficult areas but I think will give a richer outcomes – 2 very different communities. This is just the pilot study with a bigger 5 year study hopefully following.

It’s a pilot because they need to know can the intervention be delivered as intended – will it work?
It was important to get Care Homes, staff, residents and family on board for this to work.

They’ve learnt lots from the feasibility study, so are on solid ground for the pilot.
In the pilot 8 care homes will be in Yorkshire and 6 in Greater London. Some will have the intervention and some won’t ad will last for 16 months in total.

Lunch was lovely and gave us time for a group photo for Twitter….

The afternoon started with Katherine talking about their launch events into the care homes. They asked if we’d be interested in being involved in the launch event👍

Another exciting opportunity is our involvement in data analysis. Commenting on their findings and the data collected which sounds fascinating but who knows what I’ll be like in 18 months time, but fingers crossed.

Katherine then went onto PPI Evaluation Summary – we have very experienced PPI. Between 2-20 years involvement. We all got involved for a variety of reasons and 2 people stated ‘to keep their brains active as a reason……I’m sure one of them would have been me🙄
It sounds an amazing project – I’d forgotten the detail until today about why I was involved but am really pleased with the progress so far as it has the potential to transform care in care homes.

Me, Colin, Lizzie and Barbara walked down to the station in lovely sunshine this time and took the train to Leeds where Barbara left us and went on her way. It want I had the lovely company of Colin and Lizzie on the journey home so I didn’t even need a window seat as I could take a picture of them sat in front of me….

Such a nice day….

Review of the ‘I Statements’……

Well, I’m just over the hill into the second part of mad March and yesterday saw me back in London at the Alzheimers society for a review of the ‘I Statements’ on dementia.
During the past year, groups across England, Wales & Northern Ireland, as well as individuals have been submitting their views on the ‘I’ Statements. Members of the National Dementia Action Alliance have been supporting groups within their own organisations.

A group of people living with dementia had been invited by Matt Murray to attend the meeting today ahead to influence a final decision around the wording.

It was a silly o’clock start with the first train of the day at 6am but amazingly it was starting to get light – spring really is upon us….and the clocks go forward next weekend😊🐞🌸🌺

I could have gone up last night but I was so exhausted after last week that I needed a couple of days chilling at home. So the morning started off very drab and rainy, but the fact that it was getting light meant I could see out of the window from the start, so I was a happy bunny…..The sky across the Humber was doing it’s best to look cheerful as we trundled by……

And the sun did it’s best to appear as we left Selby

I must have been feeling under the weather as I didn’t fancy a cuppa tea even when I saw the man opposite with one😳😱

I can’t remember a scooby doo about the current statements as they stand – but I know I’ve been involved in discussions around them and didn’t like the current ones🙄
I remember preferring a more rights based approach as we should be able to ‘expect’ certain treatment by society.

For me, the important things to achieve, is for the language to be right, the statements to be achievable, and for no one to feel excluded.

We’d all been sent homework ahead of the meeting and given one theme to concentrate our thoughts on – mine being Dependence/Interdependence/Independence.. One theme was good as any more would have been too overwhelming as there was lots to read.

So I got there to find the group a mixed bag of people with dementia and supporters. The lovely Jean Tottie from TIDE, the carers network, greeted me with a cuppa and Jayne and Chris, Sheilagh and Joy were also there, soon joined by others including George Rook, who writes a wonderful blog, and is from Shropshire.

Martina Kane, Senior Policy Officer at the Society led the meeting.

The ‘I’ statements are used by the Department of Health, DAA and Alzheimer society along with other organisations, to understand what we’d like them to achieve and how e’d like to be treated. It’s been several years since they were put together and the tone, language and format needed a major overhaul.

From all the external meetings there came out the 6 themes we were discussing today:
Care, Carers, Research, Dependence/Independence/Interdependence, Community/Isolation and Identity.

I couldn’t actually remember what the old ones were so they couldn’t have been very memorable or in daily use. So today was an opportunity to bring them up to date and actually get people to use them. No pint in them existing if we don’t use them.

We were clear from the start that we wanted to think about ‘We’ statements. This then encompasses everyone, people with dementia, Supporters, family and friends. After all, when we get a diagnosis, everyone connected to us is affected. We then had a long discussion on implementation otherwise it makes today a tick exercise.

We all agreed we needed simplicity and short statements, otherwise people wouldn’t read them.. However organisation could manipulate anything that’s too short, so we have a very difficult task……………

We went through each theme – collected our thoughts on a flip chart and then at the end of each them tried to put it into one ‘I’ statement.

Jayne Roberts said the biggest thing that came out was that one person couldn’t manage without the other – husband without wife, parent without child, partner without partner and all other possible combinations….. that’s why we insisted on them all being ‘We’ replacing the ‘I’……..
We were beginning to flag so thankfully it was lunch and there was lots of chatter and catching up with everyone, especially George Rook, who I hadn’t seen for ages.

After lunch we went onto the final 3 themes…..

We finished by going round them all again………well I couldn’t remember what we’d said the first time round😂
Much discussion and valuable thought from everyone. We had our statements to take to the big meeting at the beginning of April. It’s so nice to agree to disagree. We were never going to agree on everything:)

Beautiful sky on the way home………

A Wonderful opportunity has come my way…….

Some of you may have already heard via Twitter or Facebook, but the publishers Bloomsbury announced last week that they have won the publishing rights for a book I’m writing with the wonderful ghost writer Anna Wharton.

Anna contacted me last year sometime and we submitted a sample to many publishers a few weeks ago. Life suddenly went crazy for a few weeks while discussions took place.
Once it was announced, I was suddenly filled with embarrassment. I wasn’t sure how others would react. After all, ‘why me?’? We all have a story to tell. I was just the fortunate one, when Anna contacted me after seeing the film I mad for Woman and Home. But people have been very generous with their kind comments, so now it’s on my blog and I’ll be able t remember the moment.

Anna is already a successful author and her book, Cut, has just been long listed for this years Orwell Prize awards. She has enabled other people to tell their story.

She says of her role as a ghost writer:

“My job is to stand in the shadows”

While, here, at least she’s firmly in the limelight and you can hear Anna talking about the power of storytelling on a short film on YouTube:

Just goes to show that you should never give in when life throws a bad hand at you as you never know what opportunities may come your way or be just around the corner…………….

South West Clinical Research Network event……

Following yesterday’s traumatic journey to Exeter, I got up rested and was raring to go for the days event. It was nice to hear the seagulls wake up first thing as it reminded me of being near the seaside.

By the way, I couldn’t find the lift to take me down from my room in the hotel yesterday and couldn’t find it again today……no signs on the walls in the corridor outside my room🤔……..I knew where it was to go up but couldn’t find it again to go down. So investigation as to the reason why was in order🤓……After breakfast I went up in the lift and searched for the lift sign in the corridors……there wasn’t one that said LIFT, but there was this……

I imagine it represents 2 people in a lift? But didn’t mean a thing to me at the time…….I was drawn to the 2 people and it looked like a hanging photo … 🤔 Besides that the staff were wonderfully helpful……..

Anyway back to the event. I was there for the Clinical Research Network, South West Peninsula Research Network Forum 2016/2017 – long title!
Leigh, Senior Research Delivery Manager, had arranged for research nurse Maxine to come and pick me up. She’d also sent me a nice smiley photo of her so I knew who to expect😊

Maxine arrived on foot and took me to the waiting car. Cassie drove us to Exeter Racecourse, which seemed miles away and I was getting very excited as I began to see we were following the signs for Torquay!! My hopes were dashed as we pulled into Exeter Racecourse ….

Maxine got me a cuppa as soon as we got there so brownie point and then Leigh came over and said hello and got me another cuppa so I could tell I was going to have a better day than yesterday..

Helen Quinn, Chief Operating Officer for the region started off the event by showing the headlines about the pressures on the NHS at the moment.
They have 50% of GP practices recruiting to studies 😳– wonder what the % is in mine!?

Helen showed a great cartoon as, like many areas, they don’t have patients queueing to participate. If only…….

She also spoke about research in the area needing to meet the needs of it’s residents, especially in the deprived areas – attracting research where the patients are …very interesting information about the area and a great talk which showed a very innovative region….

There was then 3 different talks by Clinical Lead specialties. One for stroke, Mental Health and then Cancer.
Fascinating new innovations on the horizon for stroke patients.

The mental health lead, a psychiatrist, started off by saying mental health was 15th out of 15 in recruitment so his ambition is to make it to 14. He was very funny and had everyone laughing. And he had a lovely smiley face. He wants to be the Leicester city of the region making him the Claudio Ranieri. So that means if he succeeds he’ll get the sack next year…….😂

The cancer specialist showed a slide with ‘Trial, not trial and error’
“Every patient is screened for every trial’ –‘It’s ok to ask’ so say patients. There’s an acceptance that it’s ok for patients to say no but at least ask and explain………Shows how different cancer research is to was refreshing to hear but very frustrating that the same attitude isn’t shared in dementia….

Finally, before lunch it was Kay Mitchell, Senior Research Manager with a talk called, ‘A Mountain to climb, Carving out a Career as a Nurse Researcher’’

This was a WOW talk to end the morning. She was the project manager on ‘Xtreme Everest Oxygen Research Consortium project.’

– she showed some amazing footage of climbing Everest, highlighting their breathing.
What allows some people to reach the top and others don’t? It’s not necessarily about how fit they are – could it be explained by genetics?
She showed some amazing slides of the research at Everest and the climb itself.– fascinating facts and figures simply from a logistics point of view….they had so much equipment!!

They brought their research completed on Everest back to help critically ill patients. Fabulous……

Kay finished off with some great tips:
Play to your strengths. Value the art of reflection, be honest about work-life balance as you can’t have it all. Choose your battles – allow others to add value (if they want to change something you’re written, especially if you’ve got it perfect. If it doesn’t make a huge difference, let them.) Pause and think, is it a logical, legitimate or emotional response to a situation? To pause can make a difference and stop things being blown out of proportion.
This was a fabulously different talk and everyone went into lunch buzzing……

I had a wonderful surprise at lunch time as a friend from my days eons ago with NHS Direct, now lives in the region and came to have lunch with me and hear me talk in the afternoon. It was sooooo nice to see someone from times gone by….and Cynthia hasn’t changed a bit!

Professor Anthony Wolf – clinical director kicked off the afternoon about the partnership with patients and public before it was my turn.

They gave me 45 minutes to talk so I spoke about anything and everything.

They were very kind in giving me a standing ovation at the end – very emotional…

Helen Quinn followed me by asking the question, Why do research findings not go into practice.? The DRIVE project looked at this very issue.
One of the issues was improving patient and public involvement and engagement. They knew they weren’t involving people enough –so are trying to do it differently now. To do all this all the workforce has to be on board. They’ve made some amazing progress in this area and I was very impressed by all the improvements.

It was now getting to brain closure time so the rest of the afternoon is a bit of a  blurr.
One particular traumatic moment, I remember well though, and sadly, I will have deduct a brownie point I’m afraid…………..we had a ‘tea-less’ comfort break. Someone asked me if I wanted ‘water’…………… 😳 It was all going so well……….

To finish off it was their Research Network Forum Awards and patient ambassadors presented the awards. Wonderful.

So worth the journey – thank you for inviting me to be part of your day South West Peninsula.😊 Let’s hope my journey home tomorrow is a good one…….or is that too much to ask……

My journey to Exeter………😱

Yesterday I was travelling down to Exeter for a 2 night stay.
Leigh Boxall, Senior Research Delivery Manager actually invited me to speak at their event last year but logistics meant I had to turn them down. So when Leigh asked me again at the end of last year, I decided to say yes as my calendar was empty at the time😳

I could only attend if they would put me up for the day before and travel home the day after as it’s a 7 hour journey for me😱. You may wonder why I put myself through all this travel…..Well, living alone, if I don’t continue to put everything in place to be able to travel alone – and many things have to be put in place – I would lose that ability to travel. It’s as simple as that. Another case of use it or lose it.

So back to yesterday…….it didn’t start well. After the wonderful travel of the day before today was heading for my usual nightmare journeys……the first thing I heard when I switched on the morning news, was ‘Delays between Selby and Hull of up to 40 minutes🙄. I was travelling to change at Sheffield and only had 30 minutes between trains😱………So I started to write down plan Bs and Cs just in case…….
At the next update ‘Trains suspended’😱😱 But I still had a couple of hours before I left so I thought things might have a chance to improve….🙄

Much pacing of the room ensued……..then I remembered that the train I was catching in Sheffield, also went through York😇 so then I started looking up my buses for York……only to find I would miss the train by 15minutes😩😩
More pacing ……….
I then remembered that Sarah wasn’t on duty today…so since it was only 8am and it was her day off I gingerly txt her ‘Morning!’………and waited…………
More pacing while waiting but silence……….
My taxi was due for the station at 9am so by 8.30 I decided to facetime and say ‘Morning!’ even louder😂……..a blurry eyed daughter smiled at me through the screen……..
‘Are you doing anything this morning’? I smiled sweetly………

So then the plan was hatched to get me to York………..😊 but would I make the train that I have a seat booked on from Sheffield……😳Cross Country is my least favourite train line due to overcrowding and squashed trains……

Well the answer was yes, but then I had to get a ticket from York to Sheffield as mine wasn’t valid😩 but I couldn’t settle until Sheffield until I saw that it was the train I was due to catch……..😖

And then we got to `Sheffield we were later than I expected. The train was full, I was in the wrong seat, someone was in mine so I still didn’t know if I was on the right train…. all very stressful…..The guard was no help as he was in a rush and when I tried to explain, wasn’t listening and just said ‘split tickets are fine’ and rushed off……..I didn’t have a split ticket and he wasn’t helpful😔
What a difference a day makes – stress free yesterday but double stress today……lots of photos being taken to try and chill but none worth posting…..
I didn’t relax until my arrival at Exeter was announced. Having a journey disrupted and seeing stations that I wans’t suppose to be seeing and weren’t on my list just wasn’t conducive to a relaxed journey…….

When I finally got to my hotel, I went out for a walk in the fresh without even having a cuppa……must have been bad…..I found the Cathedral…

And then walked down to the quay, with the help of one or two passers by, thinking I’d be able to walk along the river…….but it was very confusing due to paths being closed and workmen working……

More about the Conference tomorrow,,,,,,,,

so I went back to my hotel and snuggled with a cuppa, or 5……….and watched the nice evening sky develop from my window…

Another WOW! day at a different type of Conference…

There was a problem with today’s blog so I’m re-sending it…Apologies if you’ve already read it.

Yesterday saw me at a slightly different type of conference to what I’m use to, in so far as I was invited to speak at the annual Market Research Institute, IMPACT 2017 conference in London.

I’d been contacted by Lisa Edgar, Director of the Big Window Consulting Limited some months ago. She was doing some research into how financial companies could help people with dementia use their services. She then asked if I would do a double act with her at the conference.

The main speakers include Caitlin Moran – feminist and author, Nicola Mendelshon – Vice President of Facebook, Oliver James – Psychologist and finally Ed Balls, who would probably prefer to be referred to as former Chancellor, but was also listed as ‘that ‘Gangnam Salsa’
from Strictly come Dancing 😂😂
And the A-Z of delegates, was even more diverse from BBC, to Twitter and Walt Disney to Tesco along with many Research companies!

So as you can see it was a very eclectic mix of companies and speakers – oh and me and Lisa…..😊

The journey began brilliantly as Lisa had very kindly booked me a 1st Class ticket so I had a cuppa in situe even before the Humber bridge…..

which looked lovely in the morning sunshine

– never travelled in First Class ever, ever – so comfy and stress free, especially when someone keeps refilling my cuppa…….☕ and with Yorkshire Tea!

So all in all I was a happy chappie and could quite get used to this comfy travel…..😎

I wasn’t going for the whole conference as I’m travelling to Exeter today, so I wouldn’t get to hear all that was going on. Amazingly the venue was a hotel I know well near Tower Hill.
Me and Lisa were part of a session called:
“Transforming lives: research for meaningful change – Part 1.”

There were 3 different talks, ours being the last. We were part of a lunchtime session so I was worried people would be too interested in the lunch……I needn’t have worried. Five minutes to go and the room was sparsely populated……..but the next time I looked round, it was full with people standing along the side and at the back👍

First of the 3 was from Network Rail talking about the yearly 262 suicides – and they talked about how they can improve this situation, from the individuals perspective but also from a business perspective. A driver affected by a suicide takes on average of 29 days off following an on track suicide and 10 other staff respond and also suffer trauma. They’re researching an app designed to prevent these incidents by allowing people to report anyone they thought was at risk. The app tapped into the desire of commuters to help one another and broke down barriers. – “Empowering commuters to help each other”
It ran for just 8 weeks and in that 8 weeks 7 people benefited from its use amazing. A second pilot of the scheme is under consideration at the mo.

The second one was around genocide in Rwanda.
The charity supports survivors of the genocide. Many people would have seen them through Red Nose Day. They help people rebuild their lives and give them the opportunity to improve their lives. They been supporting widows to set themselves up creating jewellery in order to provide an income for themselves. They showed the 2 campaign routes to different audiences – images of people, images of the jewellery – they found people would click on images of the jewellery rather than the people. This said a lot about the saturation of donation requests from charities – sooo interesting.

Me and Lisa were last to go – we did it in the style of a chat between the 2 of us so were able to sit in comfy chairs. We’d practiced via Facetime to get the timing right.
We were introduced by Lesley Sopp, Chief of Market Research at the Financial Conduct Authority.

He asked a single question of the audience……”How many of you know someone, or care for someone with dementia”? Now remember that this audience was made up of financial and big business companies, so not my usual audience…………
A staggering ¾ of the audience raised their hand……😳
Amongst many things, Lisa asked me what had changed since dementia and I spoke of the difficulty I had using the phone and why. She also asked me what one thing would I like the audience to appreciate and my response was:
“the importance of patience and a smiley friendly face.”
And I ended by saying:
“If you Get it right for people with dementia you get it right for many other groups of people. And a dementia friendly attitude then becomes a service that is ‘people friendly’ benefiting so many more’
It seemed to go down amazingly well and so many people came up afterwards to say thankyou.
All I want to say is a BIG thank you to Lisa for asking me and giving me such a different WOW! moment. Feeling very lucky……😊

More about Lisa’s company can be found here:

You can find out more about the conference itself if you’re interested at

My little piece of solitude……..

How often do we stop and just enjoy the things around us?

When I was on the train the other day I wanted to press pause and take photos of the wonderful views out of the window. But blink and they’re gone. As we sped past I saw my first lambs in the field but in a second they were gone.

Life can race passed you without you realising it’s happening. The one place where I feel relaxed and at a slower pace is in the garden. When I’m out there it’s as though time slows down. It’s calm and it’s peaceful – perfect. I’ve even got a ‘Billy’ permanently out there to keep me company….

Even out in the garden I’ve had to come up with things to help. I did go flying up the steps in the back garden when I first moved in so now I’ve painted luminous yellow stripes at the edge of each step so I can see them.

At the front, there are 4 houses that look just like mine…….🙄 When I first moved in it was very difficult to remember which one was mine😳 so now I have a forget me not tile at each side of the door and always flowers hanging in a basket. It was the kindness of Philly Hare which allows me to have hanging baskets, as her hubby (whose name has totally escaped me🙄)came over and fitted them for me – #randomactofkindness 😊

I love pottering in the front garden as everyone stops to chat – I even had someone on a horse stop and say hello one day. That’s how friendly people in my village are. On a sunny day, I can be out pottering and chatting – perfect.
I may be much slower than I was but what does it matter – it’s just so pleasant and calming. Just what you need during a Mad March……
And of course, if I’m at Gemma’s I’ll also have a little helper……