Category Archives: Inspiring People

Celebrating the Difference we make – Leeds

Yesterday saw me in Leeds at an NIHR event (National Institute for Health Research). Derek Stewart had invited me to their annual Staff gathering at the Horizon centre in Leeds to be in the discussions around the value of patient involvement in research.

The day really didn’t start off well as my taxi was so late that it had to take me to another station to pick up my train in Brough. It was such a shame as the sun was out over the Humber and I would have been able to get a lovely pic of the bridge this morning……😔, so instead we have one of an old ruin that I’ve never been able to find out what it is but it’s always looked very pretty from afar….

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very stressful start to the day though….

However, Brough station, which is a tiny station with a big ego, has a wonderful tea cabin, with a delightful chappie selling Yorkshire tea so all was right in the world once more…….

Once I got to Leeds, I had the advantage of having the amazing Horizon walking video to take me to the venue – take a look on their web site below ….and met one of the staff looking lost with her map so I showed her the way😂😂😂

http://www.nhsemployers.org/horizon-leeds-conference-centre/location

Derek Stewart met me inside and sorted me with a cuppa and a member of staff with a smiley face badge was assigned to see me ok for the day……..and I even met Derek’s wife who follows me on Twitter, so that was a bonus…..

It was their staff away day, and apparently, I spoke to them all last year at the same event 🙄 – so the venue was packed with people from all over the country……..

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Claire Morgan started off proceedings stating that 12 people like me were there today to remind the 200 staff why they did what they did.
It’s hard for them to understand where patients fit in and how important their job is to our lives, which is why we were there……

NIHR is 10 years old this year and have had 5,000,000 participants over its lifetime. They’ve delivered 7000 non commercial studies. The numbers have increased year on year. All the research they do will ultimately benefit all of them in the future. We may be the patients of today, but all of them could be involved in research of the future. The NHS, of course, as we all know is under great financial restraints, but we do have inequalities in access to research which needs addressing.

Claire then mentioned the example of dementia – Over 35,000 people were able to access research in dementia last year. Join dementia research now comes under the clinical research network.

An important question to ask is:
“How does the patient want to engage in research?” So much of our lives revolve around technology so more technology needs to be used to engage people in research as one option.
If it’s not working, which it clearly isn’t as willing participants are always hard to find,, we need to change and it’s needs to be acceptable to staff to challenge the system and come up with new ideas.

Derek Stewart then started talking about “What could patients do for us”

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He asked ‘What’s it like for the individual” to take part in research. There’s 12,000 people a day say yes to taking part in research, but how can we encourage more…..
“How can we hear more from patient experience”? We know more about our condition than anyone, so how can we encourage more to be involved?

We then split up into groups to discuss….chaos ensued and the 12 patients were told to go against the wall and hide until the chaos had sorted itself –ha!. We were then split and each had a table of employees from all parts of the organisation in order for them to hear why we’re involved and how it applies to their job.
I had 2 wonderful groups of people who asked lots of questions and I made sure they realised that no matter what job they did it was an important cog in this very important wheel

A cartoonist was capturing the messages of the day...
A cartoonist was capturing the messages of the day…

After a wonderful lunch it was quiz time where we split into teams and answered questions all about NIHR……🙄 very funny……..I got 2 right……😂 but my team, admittedly through lots of guess work, scored 10 and came second overall! Yehh!

It was then the directorate sessions so the 12 patients all left and got together in a separate room to feedback about the day with Karen, Roger and Derek.

One said:

“I didn’t expect people to be interested in what we had to say, but they were”
another,
“If one person goes away and does something different from what we had to say, I’ve done my job”
And finally,
“I heard the penny drop – where research meets patients”

I was very well looked after throughout the day, with people making sure I had a cuppa and everything else I needed. So well organised and such a pleasure to attend. I think I actually left an hour before I meant to – I suddenly looked at my watch and think I got the numbers muddled and rushed off🙄

Staff need to be valued but patients need to be valued as well, and being involved in research makes me feel valued once more….

The afternoon sky was lovely on the way home...
The afternoon sky was lovely on the way home…

 

Young Onset Conference…..Part 3

And so to the final blog on the conference……….

So before lunch it was my turn ….

Always have my daughters with me on the slide behind me....
I always have my daughters with me on the slide behind me….

…..I spoke about employment and what works and what doesn’t. I ended my ramblings by saying:

“Not to have a choice shouldn’t be an option – we have rights as much as anyone else. I’m a great believer that everyone has a talent – when we’re given a diagnosis we simply have to learn to adjust those talents and even seek new ones – employers need to seek out and support us to continue to use our talents”

Then Sue and Jannine were after me – I worked with them on their project.
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They said it soon became apparent that very little is known about people with dementia in the workplace. They grounded their study around speaking to me, line managers, other staff, HR OH, train unions.

They weren’t able to speak to an existing employee living with dementia for a variety of reasons.
The picture painted isn’t a good one, but they did come across some good practice. Nice to see them again and hear how it had all gone and their plans for the future….

Libby Brown – an occupational therapist from Havering Memory service finished off our session. She focused on Bett and Tony’s story, who were in the audience.Bett has dementia and is still working.
She then played a short video where Bett spoke of why she liked to work. And the the role the healthcare professionals – namely Libby – played, providing advice and advocacy. They informed her employer about the Equality Act of 2010 on Betts behalf.
They helped Bett to come up coping strategies at work.
This talk demonstrates the post code lottery of support available…………the support Bett received enabled her to gain her confidence again and simple strategies means she’s still in her post.

Again, the continuing theme of specialist knowledge needed by professionals……….changing mindsets inside and outside the workplace is the hardest challenge…..

We had a nice lunch while the last session was going on while it was quiet. After I’d had a cuppa I finally found Pat and Mel! And we put the world to rights with a cuddle and a few photos of Neville the cat😻

The afternoon session was a workshop for people living with dementia and was being filmed.
Initially we had one huge circle
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However, Rachel redesigned us so we had an inner and outer circle – inner for people with dementia and outer for the supporters. I was so pleased to see so many people with dementia there….

We talked about the things we like to do but need support to be able to continue

One chap spoke of a dog he looks after at the weekend – the dog is part of his care package now as it’s enhanced his life! Bit like Billy the cat!

We talked about the value of social media in keeping us connected and feeling less isolated – I live alone and social media helps stop me feeling lonely because I know there’s always someone out there.

There’s a tendency to think that ‘it’s only happening to me’ – whereas here we are in a room hearing similar stories from everyone………
The best thing about this 45 minute session, so perfectly run by Rachel Niblock, was that everyone spoke – even people who hadn’t spoken before, which was sheer magic to hear. One lady who hadn’t spoken before in public simply said:

“Support is life giving”

Sums it all up perfectly really…….

A great conference ended with the long journey home but it had been worth the trip just to see so many old and new friends who are also living with dementia…..and the wonderful Botanical Gardens….

Read more about our new Network at:

https://www.youngdementiauk.org/young-dementia-network

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Young Onset Conference…..Part 2

Soooo, to follow on from yesterday’s blog, here’s a continuation of the conference. If you remember we’d just heard from Keith Oliver, but before I continue, here’s another photo of the lovely garden…….

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Janet Carter was after Keith and spoke about her involvement with the Young Dementia Network which is being launched at the conference. She asked what do we know about data and services for those with Young Onset Dementia…?
“There’s a lot of information we don’t have” she said, as data is flawed as most data doesn’t record those living with dementia under 65.

“There’s a gap in professional knowledge around YOD” – a recurring theme throughout the conference……

There are lots of unmet needs for YOD. Individual falls between the gaps in services as services don’t talk to one another…..
A Care pathway should be a blue print for what people should expect…..it should involve people with dementia at the heart of its design.

Janet spoke of Specialist clinicians being key in for us and also key workers but they must have specialist knowledge, skills and experience.
At the centre of the pathway should be the younger person with dementia.

GPs should be more knowledgeable on YOD. The knowledge of GPs is a massive challenge – one way may be giving them information of the red flags they use to refer those with possible YOD.

We need to work hard to increase the knowledge of key professionals and persuade commissioners to commission services.

CUPPA TEA TIME! 😊

After tea it was time for Adrian Bradley , National Lead for Young Onset Dementia for the Alzheimers  society, to bring us up to date on where the society is on YOD.

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There’s a theme appearing here as Adrian also mentioned the lack of understanding knowledge and skills among professionals………..
“Constantly having to prove our diagnosis time and time again”………..is something we’ve all said…….
Many areas are still underestimating local prevalence – another common theme…..

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The return on investments for intervention for younger people will be economically beneficial to commissioners …….
Much of what we said was around the frustration we feel at the lack of acknowledgement and expertise available for us but Adrian also shared some reasons to be cheerful

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However we were soon down in the dumps again as Adrian shocked us all by saying his contract will not be renewed… what is the Alzeimer’s society thinking of…..? I thought they were committed to Young onset dementia?

On hearing this news, I was so sad. Dementia has stripped me of the ability to feel anger otherwise I would have been fuming. Instead I simply feel sad and distressed at their decision.

Over the 2 years Adrian has been in post he has ‘started’ the process; he has made the contacts and has the knowledge to take forward the valuable information he’s gained. This should now be the start of the next phase as little has been achieved yet. If the society provided support in every area for those with YOD, then maybe he would have achieved one goal, but sadly this isn’t the case. The news made me very sad and confused………. Adrian has just begun his work – not finished………..
His last slide was Kitchener……however, we need him too……and I was far from alone in my thinking……I only hope the Society is listening to our concerns……or that it’s simply a misunderstanding……?

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final part tomorrow……..

Ooooo and here’s a link to the great new web page which tell you all about the new Network….

https://www.youngdementiauk.org/young-dementia-network

Young Onset Conference…..Part 1

Monday was a particularly exhausting day as I was in York all day at Minds and Voices, the subject of yesterday’s blog and then I caught the train to Birmingham at tea time ready for the Young Onset Dementia conference on Tuesday. The conference came about as a result from the Young Onset Steering Group that I’m a part of which is chaired by Tessa Gutteridge from Young Dementia UK. It’s aim was also to launch the new Young Dementia Network…

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I had a bit of a scare as the taxi Emily had ordered for me at the end of Minds and Voices was delayed and caught up in traffic😱 – to begin with it seemed fine as we had well over an hour before my train…..however, as time ticked by and still no taxi, I decided to go to the bus stop and chance that a bus would arrive……..😨 Lady Luck was on my side as a bus turned up just as I got there……..got the train with minutes to spare😳

Rachel Niblock had agreed to meet me at Birmingham New Street which was fortuitous as I hate that station. It always seems so complicated and now it’s been revamped, I didn’t know what to expect.
Rachel kindly met me on the station platform, which was wonderful. I’m so glad she did as I would have been wandering around for ages to try and find the taxi rank – that kind thought saves me so much stress at the end of such a busy day and so many organisers forget how such small acts of kindness can mean so much……..it then took forever to get to the hotel as there’d been an accident which made the roads gridlocked.
Sadly I didn’t make the evening meal with all my friends as by the time we got there my brain was banging after the busy day and had decided to retire before the rest of me for the evening….

However, brain and body had matched up again in the morning and I was looking forward to the day, especially as I’d be seeing my two most favourite researchers, Professor Pat  and Dr Mel from Sheffield………they arrived just in time for a hug before the start of the event…… many people came up and said hello who read my blog, which was a lovely way to start – one woman was even over from Australia and is a regular reader, but I wish I’d caught her name!🙄
Before we started I managed to look round the amazing gardens……and of course take some photos……
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Tessa Gutteridge and Hilda Hayo were the chairs for the day.
As usual there were the usual technical difficulties with the microphones……can never understand why technology isn’t tested …….….however, Hilda decided she had a loud enough voice to start while they were mending it🙄

It was funny, but soon after this I had a message on my phone from a person with dementia and his wife saying they wished the conference was streamed live so more people could log on in the comfort and peace of their own homes ………….took a while for the sound to be working so this might have stretched them a tad too far, but event organisers please note this wonderful suggestion!

Alistair Burns was the first to open – with loud voice……….😊 He started by saying how dementia was finally hitting the headlines:
“Now you can fill rooms with people interested in dementia”

“Post diagnostic support is key” – shame there’s nothing in my region for Young Onset…….

Key areas of differences are needed for YOD especially around imaging.

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He also asked if we need Young Onset Dementia hubs – well me thinks an acknowledgement that it exists would be good in my area……

We need a life time pathway, not a short term with the aim to discharge……those already diagnosed as well as newly diagnosed.

Keith Oliver was up next – still soundless……….but, being a former headmaster, was used to projecting his voice….he spoke wonderfully as always of the impact of his diagnosis.

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“The Swan from Christine Bryden’s book is a great metaphor for what it’s like to live with YOD”

was a beautiful description – we can look so well but very few people know and understand the challenges we face each day.

And a good point to end for today – Part 2 tomorrow otherwise there’s too much reading…….…….

DEEP meeting at London Bridge

Yesterday I was back down in London as Steve Milton from Innovations in Dementia had invited a few of us to a new policy interest group meeting.

At home the day started off frosty but sunny
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However, as soon as the taxi pulled out of the village we were plunged into thick fog and murkiness. It felt and looked like a winters morning….
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Virgin trains had decided to send in a replacement train to Hull which had no plugs which is always a worry when you’re travelling to and from London as I always worry that I’ll not have enough charge left if I get stuck or the train is delayed. So it was a ‘staring out of the window’ journey …………but it gave me a chance to retread all the documents Steve had sent – not that I’d remember a scooby do once I got there🙄

The further south we got, the sunnier it became……after we’d past a sprinkling of snow at Doncaster……….⛄

The venue was at the Mental Health Foundation at London Bridge. Steve had given us some walking instructions and I’d printed out a picture. I was a bit early so was trying to work out why London Bridge was familiar and so I took some photos only to realise I’d been here hundreds of time but at the other side of the river at Devon House!!!

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Now where have I seen this before......?
Now where have I seen this before……?
Of course - Devon House is across the river....
Of course – Devon House is across the river….

Weird seeing things the other side of the river….

When I got there Chris Roberts was there with Jayne and Philly Hare. Steve made me a much welcome cuppa and Toby Williamson from the Mental health foundation was also there, who I’d just been having an email conversation on the train! I also met Twitter friend Rachel Niblock for the first time😊
Keith Oliver arrived with Rosemary and Larry Whybrow-Gardiner with dementia was also there from Oxfordshire but I don’t think I’d met him before.Finally Jennifer Bute, the wonderful Gp with dementia arrived a little way into the meeting after an horrendous journey.

So what is the group about – well there was a small group of people in Deep who wanted to bring together a few people who were interested in health and social policy. A central group, not to represent DEEP but simply to be a ‘special interest group’ who are not geographically located like all the other DEEP groups – Minds and Voices in York being one of them.
Larry suggested we might be a ‘Think Tank’ and we would digest and analyse the impact of issues as new policies are being rolled out. We’re so much stronger together rather than speaking out as individuals. We’re often asked to speak at conferences as individuals, but how much more powerful our message would be if a few of us spoke together or commented as a group about things in the media.

We need to build a reputation for being wise heads first. What we all agreed was that we should work together with other organisation – we mustn’t be seen as competition, which we have no intention of being as our aim is to work with others.

Chris and Jayne brought us up to speed with the English and Welsh and also Ireland Working Group. They’d been up to Scotland to see how the Scottish system works.. Everyone diagnosed in Scotland gets a welcome pack and an invitation to join the Scottish dementia working group.Scotland now sees the need for local groups whereas, we in the rest of the country saw the need for local DEEP groups first – so we’re learning from each other.

We also spoke about the Prime ministers 2020 challenge and how DEEP groups provides a wider recruitment network of people with dementia. Philly has organised a meeting with Lorraine Jackson at the Department of Health in Leeds which I’ll be going to along with Chris and Jayne next month.

I think it was Toby who suggested we were referred to as a ‘Special interest group’ or it could be ‘Social Irritant Group’………very appropriate. DEEP is independent, representative and has authority. Dementia diaries were also mentioned as a great resource for engaging people and giving a voice to those who might not otherwise speak out.

Larry was very articulate and knowledgeable on Human right and UK domestic law.

What soon became apparent is that I’m not as clued up as the rest of the group and felt out of my depth with regards to knowledge about policy and rights so not sure how valuable I am as a member.I struggled to keep up with all that was being talked about.I’d also had a bad week anyway, so not sure how much that made things worse. I’m more use on the everyday stuff like design and wording I think. Everyone has a niche I suppose, and the technicalities are definitely not my strong point.

Surprisingly the journey to London was free from my usual jinx………..and went smoothly! I even picked up one of the new walking maps of London at the station on the way back……..bonus..

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However………the journey back was going smoothly until we hit Peterborough and slowed down…..the train guard came onto the tannoy to announce it wasn’t a ‘tourist guide round Peterborough and that police were chasing trespassers on the line at Grantham so all trains were being halted here……………he then came on the tannoy again to say it was more serious than first thought as the trespassers have now been injured and require medical attention and to expect a lengthy delay………so I’ll miss my connection and my taxi slot……..😏 I really couldn’t make it up……….my taxi people are wonderful and when I told them, yet again that I’d been delayed, they said they didn’t have a taxi but they’d sort something out for me – and they did – I arrived back to a very wet East Yorkshire, but I didn’t care…..I was home……🏡

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One day, maybe very soon please…..I’ll have a journey that goes to plan…………

Annual West Yorkshire Staff and Volunteer Day

Some time ago, before I moved, Michael White – Alzheimer’s society Operations Manager for West Yorkshire – asked me to speak at their annual volunteers day. The title Michael had given my 30 minute talk was “Getting involved and the ‘R’ word”…….

So last Thursday, the day started off early as I had to get to Hull to catch a train for Leeds. I noticed in the local paper yesterday that Beverley is going to get more train services in the new year and one direct to Leeds and London is promised, so hopefully that will come to fruition sooner rather than later. It was also a very rainy miserable morning. I moaned about the rain but the poor people in the Lake District must be distraught. My favourite place on earth under water – I just can’t imagine it – very sad.

At Leeds I was told to go to the taxi rank where Tania Taylor would be waiting to organise taxis. Tania is the Services Manager for Calderdale & Kirklees.

Sure enough Tania spotted me as I wasn’t sure which of the 2 taxi ranks to head for. There were 5 of us at the station and we managed to get a taxi together.
Once we got there I saw a few familiar faces but couldn’t for the life of me remember names…………hate that……..

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It was held at the Shine in Harehills Leeds – somewhere I know well from my days at St James hospital. There were about 60 – a mixture of staff and volunteers. There were Christmas crackers on the table which did make me wish I’d found my ear plugs as the noise was very loud as everyone’s or into the Christmas spirit …….

Michael started off the day…

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After the normal housekeeping stuff, Michael introduced it as the first annual event. West Yorkshire is a very big area with many things happening. Hands up who had been with the society for how long – shortest was 1 month and longest was 18.5 years.
So there was a good mix of experience and nice to see all the different areas represented too.

The aim of the afternoon was to discuss the future strategy but I’d already been involved in a session which had annoyed me and made me sad so I wasn’t worried about missing that. Leaving at lunch time also meant I wouldn’t miss the village bus.

Alison and Bindi spoke next – about their involvement with CRISP ( Care information Support I think ) It’s a programme for carers designed to help them support people with dementia (I”d be interested to see the content of the sessions)
They’d spoke of the valuable part volunteers play.. Someone volunteers in their office and helps get resources ready for CRISP sessions. They’d struggle to cope as efficiently as they do without volunteers.
Alison – Dementia support manager said:

‘Without our volunteers we wouldn’t be able to do what we do.’

Then Michael again – ‘A Year in dementia for West Yorkshire and looking ahead to the 2017-2022 Strategy.

He asked for 6 volunteers to hold placards at the front – each piece of paper had a stadium with their capacity see photo – He asked In comparison to the capacity of each of these stadiums, how many people with dementia are there in West Yorkshire? There are in fact over 25,000 people with dementia in West Yorkshire so she is more than Bradford Football club stadium at Valley parade which holds 25,000

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There are 67,000 across Yorks and Humber – more than double the capacity of Bradford Football club stadium – A sobering thought.

One of the main aims of the society is to increase diagnosis rates, and West Yorkshire has a higher diagnosis rate than the national average.
However, Michael also said that a diagnosis doesn’t mean anything if services and support aren’t there.

Between Sept and Nov this year – 877 carers and 668 people with dementia have accessed Alzheimer services in West Yorks– doesn’t sound many but there are areas where Alzheimers society doesn’t have a contract.

Memory Walks in West Yorks alone raised £185K – every singe walk had an increase in numbers and money raised – yeh!

We then got into the 4 regions groups to decide on the best 3 achievements of late and which should be celebrated.
People’s enthusiasm and dedication should be bottled. Lots of smiley cheery faces – perfect. Many of these people give their time and energy free of charge– wonderful.

Tania giving her areas update
Tania giving her areas update

Many wonderful projects were quoted but one which stuck out was of a side by side story (side by side is a new society venture where people with dementia are supported on a 121 basis to do something they’ve always loved but now they simply need support to continue……) A person with dementia wanted to go swimming so through ‘side by side’ they found someone to support them but the supporter soon realised they weren’t very good at swimming so it ended up with the person with dementia supporting the supporter to supported become a better swimmer!! Brilliant! Just because we have dementia doesn’t mean we can’t still do things, we just often need to do them differently……
I was up next before lunch. I spoke about my story, the importance of research, Join Dementia Research, Alzheimers society research network, finishing off with the advantages of Alzheimers………..There were a few question afterwards but then even more over lunch, which was wonderful.

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What became apparent is that within West Yorkshire, there are, like everywhere else, pockets of absolute brilliance. However, ‘pockets’ is sadly the recurring theme. We have to get consistency of opportunity to access services, because, what was obvious today is that if services are available, there’s a whole load of people with dementia waiting to access them.

The Memory support workers who I spoke to during their induction earlier in the year were at the event, Tracy Brierley, and other people I’ve met in the past, all came up and said hello. I spoke to some wonderful people over lunch, but sadly had to leave before the final afternoon session due to the infrequency of my village bus! I was so pleased to have been invited.

I didn’t take a photo of the Humber Bridge in the morning as it was so wet and miserable. It was still miserable on the way home but at least the rain had stopped……

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always I know I’ve not far to go when I see the bridge…….and it also tells me I’ve got on the right train…….😊

Tomorrow I’ve been invited to Downing Street in the afternoon and to do a reading at the Annual Alzheimers Society Carol Concert in London so a busy day ahead…….

 

Dementia Without Walls – Final Get together – Day 2!

Wednesday 7th Oct

The day started off nice and slowly with an early get up and a relaxed breakfast. We all met again and were ready for the packed day ahead.

We seemed to talk about many, many things throughout the final day and I’d actually typed enough for 4 blogs so it must have been good!, however I will only write the second day as 1 blog but highlights were:

Janet Dean who wrote the evaluation reports for Joseph Rowntree started with ‘How can we make cities dementia friendly’ – Sharing the learning from Bradford and York. Suddenly, here were people with dementia starting to influence and bring about change in their communities
One comment that rings true in York at the moment is that sometimes services are competing and all should collaborate and promote each others services – this prevents people from knowing the full extent of what’s available in their area…………

Janet Dean
Janet Dean

Next Nada and Reinhard talked about DEEP – Dementia Empowerment and Engagement Project. Those of us who belong to the DEEP Network are people who want to influence something –it’s developing a national movement of people with dementia.
Showed the film ‘language matters’ – words hurt. I’m forever banging on about appropriate use of language in all arenas and will continue to do so.

Me, Sarah, Agnes and Donna did our bit on Women and Dementia –
which opened up whole more questions than answers.

Left to right - Nada, Agnes, me, Sarah & Donna
Left to right – Nada, Agnes, me, Sarah & Donna

We talked about the Women in Dementia project. Why there’s a need for women only services – the dynamics are very different when you have all women groups. If you think about when you have a girlie night or for the men a night out with the boys, the dynamics and conversation is very different. Women feel more comfortable talking in single sexed groups. Some women feel intimidated and are more likely to speak freely than in a mixed group.
We want people to speak openly and honestly – women make other women feel comfortable at speaking about their experience.

Toby Williamson – talked about exploring experiences of people with more severe dementia with Daphne Wallace. How to deal with people not recognising loved ones or thinking people who have died years before, or who believe they are alive are common issues faced in the later stages.

They spoke of needing to find ways which are not deceitful – people forget that people with dementia have thoughts about things in the past.

What is the most helpful response?

‘going along with the experience’

It is not unethical but valuing the persons experience.

You can’t alleviate the symptoms – you have to understand how the experience fits into their world.

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People often find talking about the future difficult in any situation. For people with Young Onset it’s even more valuable. If you talk about your concerns and fears and possible effects you can prepare and be open about the future before it happens – you can also impact on developing and creating strategies and services used by services in the future.

Katherine and Eddy from York then spoke about his involvement with the Joseph Rowntree Foundation and how it had made him feel.. A group of people with dementia, including Eddy, looked at application requests for funding from the perspective of those who were going to benefit from the project. Eddy said:

‘The experience lifted me. My opinion was sought.They accepted every word we said. They sent us a letter of thanks. We were part of their decision making.’

Keith Oliver then spoke about Dementia without walls.

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He dedicated it to Rosetta Milton – Racheal and Steve Milton’s newborn daughter

‘we want her to live in a world where dementia isn’t feared.’

Keith, like myself receives many requests and invites, however he has learnt to use the following 4 questions to help him decide whether to accept

• Are the dates and location convenient
• Will I be supported
• What impact on me and those closest to me
• What impact on the success of the piece of work

I’ll now be using those questions so I don’t end up with 2 solid weeks as I’ve currently got!!

Keith said that we’re in a very new era for people with dementia  collaborating in so many projects – the impact can be inspiring, challenging and supportive both for the professionals and other people with dementia. It should lead to change in professional practices.

Keith was a Headmaster in his former life and it shines in his presentations. Telling a story has a place but we can do more than that – we can inspire change.
Feedback is crucial when we’ve spoken at events or been involved. We don’t seek rewards but what we do appreciate and take enormous pleasure from are the quiet thank yous – the emails which state what an impact we’ve had on people’s views. These small ‘nuggets’ of appreciation mean the world to us.

Living interdependently within the community – don’t isolate people by providing service within their home – independent living – make it ‘normal’ within the community to have people with dementia.

We finished off the exhausting but exhilarating 24 hours by talking about the Future and the legacy of Dementia without walls

The practicalities of how to now take this forward?
Nikki Crowther – from the Alzheimer society – spoke of how the society will take on Dementia without walls. She was struck by the partnership work. She would like to bring together DEEP groups , dementia friends and Dementia Action Alliances –and she wants to make the relationship special with DEEP. She would take away Keiths experience of Talking Point (which was the same as mine when I was diagnosed – to us it came across as somewhere carers rant and raved about loved ones which was fine for them but disturbing for us)

There are many new and exciting things in the pipeline for 2016 – We will continue the influence of all that we’ve learnt with the project in the wider world. Nada then launched the New web site.

http://dementiawithoutwalls.org.uk/what-is-dww/

Me and Keith said:

“we need to get this web site to all those newly diagnosed as the images are refreshingly up to date and nothing like the images in the media.”

It’s important to make sure the project doesn’t just come to an end but to influence people outside this room.
Project has all been about the Voices of people with dementia and far more are now speaking out around the world.
Someone said that:

‘We need to bottle what’s in this room to enable it to be shared by others.’

Once again by mid afternoon my brain had disengaged and gone into hibernation once more. We had a wonderful couple of days with wonderful company who inspired each other to continue with renewed enthusiasm…

A big thank you to Nada and Philly and all those other professionals who support, encourage and provide the opportunitites for us to speak out
A big thank you to Nada and Philly and all those other professionals who support, encourage and provide the opportunities for us to speak out……..

 

Dementia Without Walls’ Final get together – DAY 1

Tuesday 6th Oct

Some time ago the lovely Nada Savitch asked if me and my daughter Sarah would like to attend a 2 day meeting down in London. The aim of the get together was to celebrate the project which was now coming to an end and to discuss the future and legacy of ‘Dementia Without Walls’.

I felt bad not travelling with all the others down from York – Emily, Charlie, Elaine, Eddie were also coming down – but I prefer to go into my own world on the train and I may not have been very good company. Sarah just goes with the flow so knew it would be ok travelling with her.
When we got to Kings Cross, me and Sarah got a cuppa and sat watching the world go by, which is my usual thing when I get to a station before the next stage of the journey.

I also had to try and ring my removal men as everything is beginning to happen with my move….😱it’s got to the ‘stressful period’ where the sale of mine is hunky dory but the purchase is throwing up all sorts of issues. I may end up living with my daughter Gemma while everything gets sorted……..The removal men had tried to ring me on route to London and Murphys Law came into play, as each time we made contact the train decided to go through a tunnel so we were cut off……..

Anyway back to the day in question. We were heading for a ‘hidden gem’ called ‘ The Royal Foundation of St Katharine’ on the Isle of dogs in London. Nada had provided brilliant direction of how to get there from Limehouse tube station (no, I hadn’t heard of that one before either!), however, I decided to take the wrong turning out of the station and Sarah ended up turning me round to retrace our footsteps…..and actually do as Nada had written…..………..

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It’s web site described it as:
“Founded by Queen Matilda in 1147, the Royal Foundation of St Katharine has served as a centre for worship, hospitality and service over many centuries.”
It was a very peaceful setting even though we could see the Docklands Light railway from our window.
There were no TVs but wifi throughout so I was a happy bunny. Me and Sarah had our own flat which was perfect.
The grounds were also very peaceful with only the hum of traffic filtering through.

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We dropped our things off in our room and then made our way downstairs. I could hear the friends before I saw them! Emily, Eddie and his wife, Elaine and her hubby, Charlie and Philly. We all went into the dining room for lunch and met people already in their. The lovely Chris Roberts and wife Jane were already there.
After we’d eaten me and Sarah went outside into the lovely grounds and took some photos.

Beautiful autumn colours...
Beautiful autumn colours…

Because of all the house stuff my brain then just wanted peace and quiet so we left everyone and went and chilled in our rooms until the remaining guests were due to arrive.
We went back downstairs and then we were met by a ‘who’s who’ in the world of dementia with Keith Oliver and his wife Rosemary and many many other people who looked familiar.

Agnes Houston and her daughter Donna were the last to arrive and proceedings were halted while Agnes went round hugging and saying hello to everyone.

Nada then started off the event with general housekeeping and much hilarity.

The wonderful Philly and Nada
The wonderful Philly and Nada

We went round the room introducing, not ourselves, but people next to us. We went round and caused havoc. Good chaotic start to the proceedings. Virtual friends were in the room – many of us know one another from facebook, twitter and email.

Philly Hare then welcomed everyone – people have come from Wales, Scotland, Ireland, England and Belgium!
Aim of the project had been to challenge attitudes, inspire local communities and support the collective engagement of people with dementia

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Some of the Outputs and achievements were the development of the DEEP network; greater visibility of people with dementia; new debates on rights, social model, Women,and Language.

Katherine Blaker was up next (me and Katherine did a double act a few months back when we spoke to a Women’s Institute group in York) – she introduced various people who’d been asked to give a 3min talk on something they’ve done that is part of the programme.

Chris Roberts – talked about Dementia Words Matter – PIC of DEEP words Curl up and die words

Natalie Gordon from the Joseph Rowntree Trust spoke – I’m doing a double act with her at Telford Dementia Congress in November and today was the first time we’d met – I think!

Natalie Gordon
Natalie Gordon

Many more spoke – best was from Elaine from my own group in York – she said:

“being involved with Dementia without walls has given me my life back.”

She’d never before spoken to an audience – ‘she was frightened’ but she was brilliant –‘ we feel valued and listened to’ – she laughed when she went wrong and was not phased –

“Agnes and Wendy have encouraged me to speak out more and that’s why I’m here today.”

Well done Elaine!! Hubby Eric and Charlie from York
Well done Elaine!! Hubby Eric and Charlie from York

Dubheasa Gallagher from Ireland used her 3 minutes to speak about dementia in Ireland – their dementia friends session in Ireland is 2 hours – yeh!!

Katherine then asked if anyone else wanted to say anything and I thanked those Professionals who we work with and who work with us and have helped us to speak out. They have shouted as loud as we have to give us a right to speak out.
Agnes added that:

“Many have gone before us and not had our voice – we’re showing those who come after us that it’s ok to speak.”

The Joseph Rowntree Trust will be releasing many reports around Nov 3rd to coincide with Dementia Congress in Telford and I’m lucky enough to be speaking on 2 days thanks to Philly Hare asking me.

By this time my brain had decided to settled down for the night so nothing else was typed in my notes. We had a lovely supper but the noise got too much and I went up to my room to hibernate for the rest of the night. Day 2 tomorrow!

 

Invitation to meet Dr Shibley and Kate Swaffer – Part 2!

Back to the story of last Saturday. For those of you not in the world of dementia – Dr Shibley is a well-respected writer, tweeter and advocate of all things regarding dementia and Kate Swaffer, a person living with dementia, is over from Australia to promote her book. Kate is known as one of the leading authorities, gurus, campaigner, prolific blogger and known the world over.

The book launch event was being held in Camden. Shibley had kindly supplied a walking map which was a real help. It was only a couple of minutes walk from the tube station. I got to the venue early in the hope I’d have time to chat to them as I knew I’d have to dash off for my train at the end. Result, there were only a few people there when I got there. The wonderful Chris Roberts and his wife Jane were helping and then I said hello to Shibley. Kate was busy chatting but eventually saw me and came over to give me a hug.

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I feel like I’ve known Kate for years – in fact it’s less than a year and only via her blog and Twitter as she lives in Australia – but we are all part of a very close-knit community. The 50 invited guests today were nearly all familiar names from Twitter – the wonders of social media comes into its own when you meet people for real. The marvellous Gp Jennifer Bute, who is also living dementia, was there and we had a lovely chat before the start. Needless to say we were armed with wifi access and I immediately started tweeting – just no stopping me!

Hilary Doxford – friend from the Alzheimers Society – also arrived and we sat together ready to be inspired. We weren’t disappointed.

Beth Britton from Twitter did the introductions – Shibley launched his book first – a very special day for him. His book covers many topics in detail. The highlights for me were:

  • a quote he supplied by Ken Clasper (also living dementia) who often quotes people as saying ‘ You don’t look like you have dementia’ – I tweeted, that it begged the question ‘what are we suppose to look like!”
  • He spoke of the lack of voice of consultation with people with dementia – how the 2002 ‘Forget me Not’ report had no voice from people with dementia and the 2012 ADI survey only included 6% of people with dementia
  • Words can instill power – he then used the thought-provoking quote ‘paralysis by analysis’ when speaking about whether to use the term ‘ patient’ or ‘person’
  • He kindly showed a quote from me – I had to give that slide a second glance as I wasn’t expecting that bit – very flattered

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Shibley also has a strong opinion on the use of dementia support workers and favours Admiral Nurses – run by Dementia UK – he did end by saying there’s a place for both. I also think there’s a place for both. The expertise of Admiral nurses is needed but. Dementia support workers, are also key in providing support but only as long as they receive the appropriate training.

He strongly advocates a social model of care rather than medical model of care as it’s much more person centred than the medical model – quite agree Shibley.

Martin Rosser had given Shibley a stack of Join Dementia Research leaflets – I tweeted for everyone to consider signing up.

I’m sure Shibley book will be used and consulted upon in many arenas. He is so knowledgeable and his book a must read.

It was then the turn of Kate Swaffer – Kate has a book being published in the near future with the fab title of:

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Kate is such an eloquent speaker – and here are a few of the highlights:

  • She showed a slide of swans as an analogy of how hard we have to work just to stay afloat – when we stop for a holiday or break,it takes a great amount of effort to get back up and running – hadn’t realised until she said it but how true that is.
  • She spoke of a great passion of mine – education – or lack of it for healthcare professionals

We wouldn’t employ unskilled people in business so why do we employ doctors and nurses who have so little skill and knowledge in dementia – they receive ‘minutes’ worth of training during their courses.

  • She also spoke of the shocking questioning of hers and others diagnosis simply because they were trying to live life as best they can with dementia. How can clinicians question a diagnosis simply because you were trying to ‘outmanoeuvre this cruel disease’! Someone Kate knew was even accused of stealing her scans as they clearly showed she probably had Alzheimers yet here she was living positively – shocking, shocking, shocking……
  • Language is key – a huge concern for all of us involved with dementia. Language can have a positive or negative influence on those diagnosed. The Press and media need to be challenged at every point where inappropriate language is used when referring to dementia.

Very early on I stopped typing as there was so much good stuff to tweet!!

At the end, after rapturous applause, Kate and Shibley had a question and answer session. Someone said how the NHS is restricted on changes it can make due to funding – it all boils down to money. My hand went straight up and I highlighted that changing language costs nothing. I said, as I’ve said so many times:

If positive language was used by clinicians it would change the confidence and outlook of the person with dementia. If clinicians provided strategies instead of telling us we were worse, it would give us something to feel positive about.

It was asked what steps could we now take back with us and Kate’s immediate response was ‘language’ as it’s a quick win and it costs nothing. Perfect. One thing that struck me is that Kate was banging on about things I’m banging on about years ago. That’s sad. I don’t want to feel like I’m banging my head against a brick wall – sadly Kate appears to have met the wall on countless occassions  ahead of me…

There aren’t many people in the world who inspire me but Kate Swaffer is one such person. Meeting her for real didn’t dampen that opinion, it only served to consolidate. If you’re a twitterer and want to see the conversations from the day, search under #best2dementia📚s – it makes for very good reading.

Shibley and Kate
Shibley and Kate

 

 

Invitation to meet Dr Shibley and Kate Swaffer – Part 1

You know how some days you’re left with a warm glow inside knowing that you’ve had a fabulous day, well last Saturday was one such day.

Dr Shibley had contacted me some time ago to see if I’d like to attend the launch of his book and hear Kate Swaffer talk about her up and coming release – obviously I had to consider this for all of a nano second before accepting.

It didn’t start off well. I got to the station to find loads of people milling around – never a good sign. When I looked at the board, my train had been cancelled…..😱. When I looked at the next train that had also been cancelled….😱😱……
Went to the stressed man at the info centre to be told that there’d been a breakdown near Edinburgh and all Virgin trains had either been cancelled or were expecting several hours delay …😱😱😱. Needed to go sit down with a cuppa and stop my brain rattling with confusion..
Sooooo, went back to man and said:

Me – ‘If I went to Leeds would they also be delayed?”

Train man – “no, they’re fine” 🚂

Me – ‘Ooooo, when’s the next train to Leeds?’

Train man – ‘It’s delayed’

Me – ‘Ok so what about Grand Central trains?’ 🚂

Train man – ‘Oh yes, they’re running’ –

Me – ‘When’s the next one? ‘

Train man – ‘10.12……but it’s delayed, could be by up to an hour’ 😡

Talk about getting blood out of a stone….Bless him, I realise he was stressed but straightforward info would really have been useful.

Anyway, I decided to sit and have my cuppa and watch the world go by as I really didn’t want to miss meeting Kate Swaffer and Shibley. I wrote a bit of my blog from the day before and by the time I’d done all that it was announced that a Grand Central train would be arriving shortly – very full. So I jockeyed for position with the 200 + other passengers knowing full well that seats would be in short supply if there were any. They’d said we could use our Virgin tickets thank goodness. The train pulled up and a load of sardines fell out – it was York races so it was packed to overcrowding to York…
Amazingly, and I’m not sure how it happened, but I was first on the train –ha! Result! I’d also randomly chosen a carriage where the seats weren’t reserved and got my favourite seat by the window. The other 199 passengers got on behind me and they closed the sardine can with not even any standing room available – someone must have been looking down on me that day.

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Well it’s taken me so long to tell you about the journey that you’ll have to wait until tomorrow to hear all about my meeting Dr Shibley and Kate Swaffer! Here’s a look at their new books…

by Dr Shibley
by Dr Shibley
Kate's book is due out later this year - great title!
Kate’s book is due out later this year – great title!