Category Archives: Inspiring People

Celebrating International Women’s Day……

An extra intrusion into your weekend today…….as it’s International Women’s Day….

Hear what I recorded for a Dementia Diaries special by clicking on the link ……..about the special women I’ve met since being diagnosed with dementia……

https://dementiadiaries.org/entry/13852/to-mark-international-womens-day-wendy-recounts-her-meetings-with-other-remarkable-women-through-deep

Or you can read here…

Sorry if I offend my male playmates, but Sunday is International Women’s day, so this diary is celebrating all my wonderful female playmates in the Deep Network…..

My friendship with Deep started at the beginning with the WOW festival in York. Women gathering to debate, discuss and celebrate. It was my first meeting with others living with dementia and my first sight of Agnes Houston, my now life long friend …….she showed me the way, showed me what was possible. How women despite dementia, can have a voice…

Then there was the Speaking from the Heart Event in London – once again all women with dementia coming together and talking openly about female issues, with our lovely guest Jane Garvey from radio 4 women’s hour…..Jane said in an article afterwards that she’d been reluctant to attend as she didn’t know what to expect but on arrival had heard raucous laughter, a signal of what was to come.

Women are often in the minority in many circumstances, in the workplace, in politics in management in general…..but dementia has put us in the majority. More women affected by dementia than men. Perhaps this is natures cruel way of readdressing the balance. But many female playmates have found, through the DEEP Network, that strength comes in many guises. Where once we may have been weak and undermined, now we have the courage to speak out, to stand firm, knowing our strength lies in our numbers.

So thank you DEEP for giving us our voice, allowing us to find the voice that dementia and life had removed from many. Thank you to our strong female enablers who help us find that voice, because without you, we might still be silent…

Hot off the Press……..!!

Today sees a major announcement by my favourite people…….

“Innovations in Dementia celebrates £700k National Lottery grant to help people with dementia have a say” 👏👏🙌🙌

It’s the launch of their Dementia Voices Programme and will include a continuation of funding for DEEP and Dementia Diaries…..both of which play an enormous part in my life…..

It was in the early days of my diagnosis that I came across Innovations. It was founded by Rachael Litherland and Nada Savitch who wanted ‘to inspire people to think differently about dementia.’ I first met Nada at the York Women’s Conference that appears in my book and that conference changed my thinking and took me into a whole new wonderful world.

Since that day, that day when I was inspired to think differently about dementia, they have enabled me and many others to take part in all kinds of events and campaigns. More importantly they have allowed people with dementia to meet each other and become part of the wonderful family that is the DEEP Network. Pre dementia, I was never one for joining groups, but when I was diagnosed I had this urge to meet others going through what I was going through. The moment I stepped through that door and saw ordinary people, just like me, was a life changing moment. That’s why Minds and Voices is so important to me. We’re just there for one another, to share ideas, to support one another through good and bad.  We can walk in feeling down and leave with a smile on our faces.

We’re part of the DEEP Network, as are over hundred groups now up and down the country. It makes you feel like part of a family, a different family, a special family. You can see if there’s a group near you, or just find out more, on their web site and if run or belong to a peer support group, please think of joining us….

https://www.dementiavoices.org.uk/

And through Dementia Diaries they have given me and my playmates a way to communicate with the wider world…..

You can listen to me reading this blog on Dementia Diaries …

https://dementiadiaries.org/entry/13556/wendy-celebrates-the-launch-of-the-dementia-voices-initiative

Amazingly there are only 6 people in this not-for-profit organisation, Rachael, Steve, Philly, Damian, Rachel and Kate. You would think there’s a whole army with the amount of stuff they do!…but those 6 people work tirelessly enabling me and all my playmates and together we make up this giant army doing our very best to bring about change and continue to inspire others entering this alien world to do the same….

Funding is always an issue for many organisations so I’m so thrilled the National Lottery has seen fit to back this project with the £700,000 grant. Yes they are a small organisation, but have an understanding of our needs far bigger than their size. They are the only people I trust to support me because I know they ‘get it’. They are willing to listen and learn continually. They never forget why they do what they do.

Me and my playmates would be lost without the work of Innovations. This money will enable them to continue, in their ever innovative way, to help people with dementia inspire each other and inspire others to think about dementia differently…..

This news has made made my day……..and this lovely piccie of the 6 mashed together by Rachael shows what a smiley lot they are – our ‘able enablers’ for all to see……from left to right, Rachel, Damian, Philly, Kate, Steve and Rachael…..although we must get a new piccie of Steve so he looks less scary and less like a convict!!

 

A moving video that says it all……

Big Ian Donaghy is a well known figure in York for raising awareness about dementia. I don’t think we\ve ever met (although I suppose we may have!( but I know him from Twitterland……..

Recently one of his wonderful films came to my attention….and I just had to share it as it says everything I say just perfectly…..so sit down with a cuppa and be enthralled for the next 3 minutes…..the man in the film is the dad of someone I know….

Why I chose to step down from the 3Nations Dementia Working Party….

So following on from yesterdays blog on giving yourself an MOT, I thought today I’d tell you why I’ve stepped down from the 3 Nations Dementia Working party. This was for a different reason and I didn’t want people to think I felt it wasn’t important because nothing could be further from the truth.

I used to enjoy our 3 monthly meetings. Spending time with the most wonderful people on the planet.

Some members have come and gone for a variety of reasons but I always promised myself that if I ever stood down, I’d have a replacement for me from Yorkshire to offer up as a suggestion. I also thought I wouldn’t stand down until my term of office was up!!

However, at the last meeting I suddenly felt out of my depth. I was suddenly in awe of the knowledge of my wonderful playmates; knowledge I knew I didn’t have.

I felt I was there for the wrong reason. My reason being, I love to be with all the wonderful people, however that isn’t reason enough. Yes, I can blog, yes I can write a speech, but that’s where my expertise stops. I’m with people who are supremely knowledgeable in Human Rights, in the law, in being able to stand their ground on so many things over which I have so little stored in my memory.

I’ve always said our uniqueness and our unique talents is what makes our group but I feel my talents aren’t the right talents for the group and should be replaced by someone who has more of what the group needs.

And so I’ve stepped down. I’ve made my recommendations but, of course, due procedure has to be followed as there may be others to consider.

It’ll be me who misses out on this wonderful group as no one is irreplaceable. I’ll miss seeing all my playmates in one room but I know we’ll see each other in different circumstances and that’s a great comfort.

Of course, me stepping down means someone more appropriate can have the pleasure of being in the company of these wonderful people.

I will still carry on doing what I’m doing and following and supporting all the work they do. I may be gone in presence but I’m still there looming large and promoting all they do.

My first evening event……….

After Wednesdays event at the Humber Conference, with a blip in my brain at 11am rather than the usual 2….I knew I might wake on Thursday morning with the banging head dementia throws at you……and sadly it didn’t prove me wrong….

It couldn’t have happened at a worse time as Thursday night, I was trying out my first ever evening event….🤦‍♀️😶🙈

But then dementia is like a cruel game and I’m sure it did this on purpose. I could hear its ghostly laugh……..Anyway, there was no point in taking 2 tablets as they send me away with the fairies and I fall asleep, so I just took one in the hope it would take the edge off the banging fuzzy head…..so that at least I’d only have dementia to cope with….

I was heading for Lancaster for a wonderful event at The Dukes Theatre in Lancaster. It’s a 2 day event entitled:

“Creative Adventures in Dementia – A Life more Ordinary Festival”

but I was just there on Thursday and leaving Friday morning. I’d been asked a while ago if I would take part in a conversation with the wonderful journalist Nicci Gerrard who also writes under the name of Nicci French with her husband Sean. She interviewed me at the time of my book release for the Observer and did a lovely piece and was soo kind. She is also the founder of John’s Campaign.

Also involved in the conversation would be John Middleton, whose character Ashley had dementia in the British soap Emmerdale, and Professor Sebastian Crutch, a neuropsychologist at the Dementia Institute who is conducting fascinating research called ‘Created out of Mind’…..

https://wellcome.ac.uk/news/created-out-mind-shaping-perceptions-dementia

The fact that it was at 7pm was a tad worrying as I’d never done an evening event before but, even though I was travelling feeling groggy and with dementia in tow, it meant I might be able to get some shut eye in the afternoon.
The fact that I was on stage with others was also comforting but I knew Nicci was the perfect person to be interviewing as well.

Anyway it was a beautiful sunny morning when the taxi arrived and the town cows lifted my spirits as we trundled passed the Westwood…..

I didn’t want to mess up on the night as I’ve got the Hays Book Festival in a weeks time and that’s also in the evening so I was using this one as a trial run, but there’s no accounting for dementia putting a spanner in the works……..anyway……..to last Thursday……

I’d given myself plenty of time to change at Manchester so was able to amble quietly instead of rush about and arrived at Lancaster at lunchtime. I’d printed off all my maps etc so was discombobulated but calm when I got to Lancaster at lunchtime.

Good job I was calm as I got my left and right properly muddled and turned the wrong way out of the station🙄……but when I got to the bottom of the hill I realised I was probably going the wrong way and retraced my steps……..and eventually found the hotel…..going through intensive refurbishment😳🙈 but the staff were very friendly.

I left my suitcase as I was too early to book in so had no choice but to go wander round Lancaster…..and straight opposite was the Castle…..also going through major renovation😶

I then tried to find the theatre but my left and right were totally at loggerheads with one another – never had that before……I obviously took a wrong turning and found the river, but at least I could see where I was on the map -ha! I was stood on the only bridge on the map

Anyway, I trundled along and eventually found the shops again and then the theatre by pure chance🙄 but I seemed to go round in circles, continually getting lost🙈

The time came when I could finally check in to my hotel…….I found it a strange place….certainly not dementia friendly……with a very old fashioned lift, that was beyond me – which was having bits painted so I couldn’t use it even if I’d wanted to and I was on the 4th floor🤯…..very strange layout altogether unless I just wasn’t in the mood today…….but once I found the equally strange room, with sloping floor😳 and strange smell of curry on the linen – I was going to ask to move rooms and wrote it down on my blog …but not until I had a lie down and closed my eyes………

THEN I woke up with a start at 5.10😳😳😳😳😳 – we had decided to all meet beforehand at 6pm🤯 I’d fallen asleep without setting any alarms😱 I staggered about the room – very small room, so must have looked like a Pinball bouncing off the walls and furniture ……..cuppa tea thought brought me to my senses……..and instead of a curry smell, there was the smell of fresh linen – strange the tricks dementia plays on you, but that’s a new one…….🙈…….

After gaining consciousness and a semblance of normality I made my way to the theatre….but again got completely lost….🤦‍♀️……but I asked a smiley face and she gave me instructions. She must have stood and watched me as a few minutes later a breathless woman came up behind me saying I was going the wrong way🤐 and turned me in the right direction again. A 2 minute walk turned into a 45 minute round the houses walk…..

I finally got there to be met by the lovely Nicky Taylor from the West Yorkshire Playhouse, who promptly sorted me out and took me to the lovely Gil Graystone who had done much of the organising.. I met John, who was already there, followed by a lovely hug from Nicci and then Sebastian joined us.

I have nothing typed as there was no point in taking my ipad, and the chaos of the walk was written in Notes on my phone to deep me calm, so the rest is all about feelings.
Well I can truly say, I felt I was with 3 wonderful, warm and kind people. We clicked as a group instantly. I could have sat and talked to them all evening. The event must have gone well as everyone said kind things – someone even highlighted the jokes I cracked😳 so goodness knows what I came out with😂

We finished at 9, which was crazily late for me, and everyone had a drink in the bar – obviously mine was of the tea variety – before heading back to the hotel, with a banging head as it was very noisy – note to self, I MUST GET MY EAR PLUGS SORTED!. I felt I was walking back with 3 people I’d known for ages. I felt safe in the dark shadowy world outside with them all at my side and John walked beside me, taking my arm when I wandered off piste. 🙄

Such a lovely experience, with wonderfully lovely people…….even if dementia tried to ruin it……but didn’t succeed……..😊

Back in London again……..Day 2…

Following on from yesterdays blog……..

Sooooo after night waiting for daylight to dawn, I got up, passing the 2 red lights flashing at me still………In the light of day, the source became clear – the aliens had left the room – and it looked like a fire alarm on the ceiling…….but isn’t red for danger?????
Ah well……at least I knew……..and the trains soon started up again outside my window.

Me thinks there could be a new station on the London Underground …….Room 218……

Anyway, today it was time for the actual meeting of the 3 Nations………..

I had the lovely surprise of George Rooke having arrived last night as well, so we were almost a full set – just Northern Ireland missing……it was nice to have so many people present.

It was also Chris Roberts birthday! -as I found out from Facebook when I went on first thing to find out whose it was………🎂🎉

So once we’d all got our cuppas, had hugs and catch ups……..we started off going through the actions from the last meeting. I realised that I hadn’t done anything that had my name against it…….🤦‍♀️ but I need an email asking me so I begged forgiveness🤣 and asked Hannah just to email and I’ll reply…..

Aims for today – to assess how the group is running……….promoting the group, and the web site development……..to name a few….

We need to get the membership forms and database up and running by the conference so we can sign people up……..at present we have nothing to offer people, which is very frustrating.

We all said we need to invite DEEP to our meeting as from the start we said we had to work with the Society but also DEEP.
We’re in limbo until we have the database and membership form signed off but we’re promised it is coming soon and we’re pressing so much for it to be up and running at the Conference…….

WE’ve had people from abroad wanting to be members and we agreed that we might be able to have a ‘Friends of’ section who receive the Newsletter and hopefully want to create a working group in their own country.

We can work with professionals who can help people who have no interest in our group.
As Shelagh said, we, in the group, do live in a ‘Dementia Bubble’ – we don’t represent many people with dementia but we can help them by influencing change at a higher level and those people can then help those with no contact with services……many people are ‘hidden and seldom heard’ said Nigel……….
Shelagh opened up the conversation that everyone was thinking………..
‘We need to make sure, no matter what, that no one gets left behind” – said Nigel.

We can only do what we can…….sometimes we don’t see in our line of vision the changes happening as change is too slow………..it’s very frustrating for us. Time is one thing that isn’t on our side and change takes so much time that it seems to us that we’re not making progress when in fact we are – just not quick enough for us…….

We then handed over to Bernadine from Northern Ireland, who was here instead of Adele today – her first words were ‘Don’t beat yourself up – we have achieved an awful lot by being here’
The group can’t be all things to all people.

The social care issue is one thing that will and does affect us all, so maybe that is our one point of focus………’It’s going to the right person and going with one thing’ said Nigel quite rightly.

It seemed a very subdued meeting – something didn’t seem right and comfortable for me……..I think we’re all frustrated by words, words, words, and need actions and change before our heads explode……🤯🤯🤯

After a tea break Rik joined us from the digital team to define what our site needs to do and for what type of users. We split into 4 groups and discussed the basics of the web site.
Who the users will be and the needs they have from the website

I had trouble with this and was totally lost until I sat in and listened to George and Nigel and then was fed by their knowledge and enthusiasm. My single contribution was under the group Activists where I said we need to give people ‘permission to complain’

Once Rik comes back with a resume of todays workshop we can then go to web designers

Once Rik had left we finished of the final bits of the agenda….went through our budget etc…..always interesting seeing the costs of everything……..

Followed by…….Lunch time……..phew….. as it had been a long morning…….time for a cuppa………..

We were heading for the final session…….and I was verrrrry tired and finished………

Maybe I needed a ride on this speed boat to wake me up – random, yes, I know but I just like the piccie of speeding away……🤣

Shelagh spoke of the need to produce work where we’re actively battering the Department of Health around Social Care. Let’s use the strength of this membership and hopefully the wider membership who will join us, to actively batter.

‘Nothing changes without political will’ Nigel highlighted. We can bang on doors and talk ‘til we’re blue in the face but nothing changes. We still have poor post diagnostic care. For every single person diagnosed, there are people around these people also affected. So the figure of 850,000, which we believe to be an underestimate of those living with dementia, is multiplied tenfold when you add in those around them. This highlights the enormous chaos of the Social Care system even more.

Diane spoke of the other end of the scale – how working within our own communities is another direction.

I think the discussion that ended the day showed our frustration and part of my little spiel for the Alzheimers Society conference in a couple of weeks time fits nicely……

‘Words, say how we think. How we feel. How we want to be treated.

But we now need ACTIONS to turn these words into actual change.”

Definitely switched off then, I think……..so nothing on the end session with Tim McLaughlin…….I had to leave a little early as well as Northern Trains were on strike again today and I would have got stuck in Doncaster……😳

If you want to hear more of what I say, along with my fellow members of the 3 Nations Dementia group, come and hear our opening 45 minute session at the Alzheimers Society Conference on May 22nd……more details here…..

https://www.alzheimers.org.uk/dementia-professionals/conferences-and-events/alzheimers-society-annual-conference

Dementia Diaries meet up – Final Day…….

Following on from yesterdays blog…..After breakfast, the final day. And it was another glorious day so time for one last photo of the grounds

Yesterday we started off with a song, today it was Steve from Stockport with a poem……beautiful

We had a recap of yesterday. We did say, they could make anything up as we were all looking puzzled trying to think what we’d said…..🤣

We spoke about how we can promote dementia diaries in the media and we all came up with our own personal contacts that might be willing. The funders will be able to give us loads of help with the media…
Raw emotions that we report on can make a big impact on the media for stories in the news, especially our feelings around the infamous stupid headlines that so often appear…

We then went onto to do some planning for the funders meeting as they were due to arrive later in the morning.

So what happens next? All the info from the last 2 days will be written up. Rachel will come up with a draft pack re guidelines for recorders and a joiners pack.

After a quick cuppa, the last of the sessions before lunch and hometime was with the funders. But first, we couldn’t resist a final opportunity to get a piccie of the wonderul ‘Class of 2017’

Not just any old funders, but Comic Relief and The Big Lottery. We all had questions……but first……..Paul and Tommy sang a song….
We all then went round and said 3 ‘golden nuggets’ about ourselves. I finished mine by saying “So a diagnosis certainly isn’t the end and everyone before you demonstrates that.”

We then all went round and told the funders why Dementia Diaries is important to us. Mine was:

“It enables us to give our immediate response to contentious issues in the news before the moment is lost and before it escapes our memory.

We finally had 3 questions for them and mine was:

“What do you want to get out of it – why do you want to support us?”

Rachel and Michael both gave their responses – They want decision makers influenced, to hear positive stuff as well as negative, To both of them challenging the stigma is sooo important which was wonderful to hear. To show it’s not all doom and gloom as we’ve proved to them that there’s so much more to dementia – perfect brownie point answers.😊

There will be a big launch in the next few months, so I’ll be sure to do another blog when it happens but as for the last couple of days……..
Philly and Rachel got it right and were amazing facilitators. They got so much perfect over the last 2 days which made all this possible for us, especially regarding the travel detail. Without their thought and devotion to getting it right, we wouldn’t have had a chance of getting to events like this safely and confidently.

BIG thankyou to them – it was a blast😘

You can hear our voices and see our words on the web site. The new improved version and content will start appearing in the next month or so……

http://dementiadiaries.org/

A drawing from Tommy finished the day and seems a great way to finish this blog.

people with dementia often feel like this inside…
But if you turn the image round…..with support and encouragement, can feel like this…

Dementia Diaries meet up – Day 1……

Last Thursday saw me travelling to my least favourite station of Birmingham for a 2 day meet up for Dementia Diaries.

The morning started off with trauma as my shower door came off its rollers 😳and then I had a power cut – all within 5 minutes of getting up😱 I ddidn’t know whether it was something I’d done or the street had gone out..
I was going up and down the stairs saying ‘oh my goodness’ to myself not knowing what to do……when it came to me……….make a cuppa tea………😊
The phone suddenly whirred into action signalling the electric was back on – all in the world was straight again…..

I couldn’t face having a suitcase on my least favourite train line – Cross Country, especially in August – so I became the bag lady…….at least then I could have it with me.

It was the most gorgeous morning, after the torrential rain of late.The taxi was nice and early and the first train was on time. Philly Hare had posted some amazing pictures of the venue on Twitter and some people had arrived the day before. Agnes Houston and George Rook were already there waiting with several others.

The wind farm looked lovely surrounded by blue sky as we trundled on our way….

The Cross Country train at Doncaster was the chaos I was expecting. Thank goodness I was a bag lady as suitcases were piled high with no room anywhere. The train was chocca but luckily no one was in my seat……..

Rachel Niblock txt me with instructions of where to meet when I got to Birmingham, which was a wonderful idea. She also txt everyone to check they were ok – Gold star earned ⭐️ and was there waiting with Teresa Davies, nickname Dory. Jo Bennett and hubby met up with us and we all got a taxi to the venue.
I had a lovely hug from Philly and then Agnes, out in the garden.
George Rook earned the first brownie of the day by immediately getting me a cuppa tea  😊👍

The venue looked amazing from the grounds. It was a Quaker Centre very close to Burnsville village.

We were all meeting up with Philly and Rachel to look at the dementia diaries project as Innovations has been given funding to develop further over the next 3 years and will be relaunched in the Autumn.

After lunch and meeting everyone, we piled into a wonderful room ready for the afternoon session and started off with a wonderful song by Paul Hitchmough. There were 17 of us in all from Scotland, England, Ireland and Wales – wonderful.

Dementia diaries enables us to give random views on whatever comes into our mind and is such a valuable resource for us but also for professionals, journalists and anyone who wants to hear what people with dementia think.

We set our ground rules first. With the help of our yellow cards and some chattering teeth Philly and Rachel had given us all to encourage us to keep talking – doubt if that will be a problem!

As a way of getting to know each other we all had to talk to the person next to us and find something remarkable – Mine was…..that I’m doing a Firewalk for Dove House Hopsice in October, but that deserves a blog all of its own soon…….☺️ turns out I was sat with a group of truly remarkable people, but then I already knew that……

First up was talking about our experiences so far as it’s been going for 2 years.
It was started by a couple of wonderful journalists who had a mission to help those who’s voices aren’t often heard. They set it up with DEEP from the beginning. We use our On our radar contraptions to record whatever we wanted to say and the web site allows people to hear our voice.

So now Innovations have taken over Dementia Diaries from On Our Radar.
We spoke about what had worked and what hadn’t. For some, it was used very often. However, for others, who didn’t use it often, it became something of an alien so it’s key to improve the experience.

What came out of it is that we have to have a variety of methods – some find the everyday phone good, others the contraption. I mentioned about needing to be able to send in text if you find the phone difficult 🙄

After a much needed cuppa, we started up again. Rachel had already filled reeks of flip chart paper.

We talked about what support we need to do our report. We could be the buddy’s of new people within DEEP groups

We had an interesting discussion about whether supporters should be allowed to post a recorded message. There were many different views, some in favour and some feeling uncomfortable. We always say that our needs run in parallel but whether this is the right medium is yet to be seen and agreed. There are many pros but also many cons……

Last session of the day after another cuppa……was to hear our views about consent and keeping people safe etc and the ground rules for what is acceptable to say. Again, soooo much discussion and issues highlighted.

After tea, 4 of us went with Philly for a lovely through the grounds with many photo opportunities and once again, much laughter and hilarity followed before it was time for bed.

Agnes, Dory and Jo in a “See no evil, hear no evil, speak no evil’ pose…….😊

The final day tomorrow…….

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:

http://www.the-big-window.co.uk/

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

https://www.mrsannualconference.com/

Policy Think Tank meeting in London……

Yesterday saw me trundling back into London for a meeting of the Policy Think Tank organised by Steve Milton and Philly Hare from Innovations in Dementia.

The group consists of other wonderful people with dementia who all want to see policies and opinions change for the better. Steve and Philly facilitate the meeting.

The day started off very drab and drizzly but by the time we trundled past the Humber the sun was desperately trying to show it’s face..

Steve had kindly sorted out all my tickets. The venue is the Joseph Rowntree Foundation offices next door to the secret squirrel building at Vauxhall (MI6😊) Their website provides a wonderful map and simple instructions – big brownie point.

I arrived to find lots of my friends ready for a hug and Steve asking if I wanted a cuppa – perfect start:)
After a catch up and bite to eat the meeting began

We spent the first half an hour going round the table finding out what everyone has been doing locally, nationally, internationally and globally

Chris, Jayne and Nigel talking about all their work with the Welsh assembly. Peter talking about his work with Dementia Action Alliance, Hilary is part of the World Health Organisation, Larry, with all his work in Oxford and Jennifer and her work with NHS England.

These people do so much more nationally than me and are true campaigners whereas mine is more awareness in a different way. I often feel a fraud in the company of these folk as they’re so much more knowledgeable on government policy etc.

But we all know that issues, both at high level and local level are equally important. They’re very different but equally important, no matter how big or small.

In the US, they’re wanting to shift the meaning of the word ‘dementia’ to refer to the later stages only so much discussion followed.  A lot of that is because of the insurance model they have over in the States.
It has started to creep into the UK.Larry told us of his CCG now adopting a middle diagnosis – Mild cognitive impairment,  moderate cognitive impairment and dementia.I’m not sure whether I approve of it going that way………….seems a way of denying those in the early stages from obtaining support…….

It was then Professor Peter Mittler who spoke about the UN Convention

Peter is a font of all knowledge on all things rights based and never ceases to amaze me. The knowledge is something I just can’t retain, but I’m behind him 100%.
2017 is the year when the UK finally comes up formally for assessment before the UN. All eyes will be on the UK and its treatment of people with any disability.
They have to respond to lists of questions by the UN and by us through people like UK disability rights.
Peter is at the House of Lords tomorrow with Philly at the launch of the report.

August is the month when the UK will be given a grilling in Geneva.

By the end of the year the UN will give the detail of how badly the UK is doing for people with disabilities, including dementia.

This Human Rights year is a golden opportunity to make a point.

Peter gave me a brilliant quote to use:

“If we don’t reach for the stars we’ll get the dregs”

We then had some discussion about funding for the group, and a discussion on the 3 nations dementia working party.

The danger with the big national groups is that they become seen as the voice of people with dementia whereas we all said that people at local level are just as important.
We want to keep going as this year is so important due to the UN disability rights work.

It all got a tad intense and vocal so Philly called time out for a tea break time……phew, I had a headache when I arrived, so it simply continued banging away……..as we’re a lively lot…..😊

After a much needed cuppa Philly lightened the afternoon .

British institute for human rights are running a twitter campaign #alrightwithhumanrights and we all had our photo taken with different messages we came up with…..

The motley crew all living with dementia…..
And now with everyone….

I’m not sure if anything else happened after that as my brain switched off and before long it was time to go home. I had the lovely company of Peter, Chris and Jayne to the tube station and we all made our weary way home.

It was so nice to see everyone and a great way to recharge enthusiasm…….