Category Archives: Social Media

A WOW day with Ward Leaders at Portsmouth Hospital…..

I was invited by Debbie Knight, Head of Nursing and Midwifery Education to talk at the Ward Leaders day at Portsmouth Hospital. We’d met virtually via Twitter as their Book Club had recently read my book and they had a ‘chat’ session on Twitter and asked me to join in which was great fun……

So at silly o’clock on Wednesday I found myself trundling the long journey across to my friends in Trowbridge ready for the shorter journey Thursday morning to Cosham, where the hospital is based.

I’d set my alarm the night before for 5am, ready for the taxi to pick me up at 05.45……well I thought I had..🙄….I’d certainly set my phone to 5am but luckily I opened my eyes, looked at my phone and it told me it was 04.57…..and for some reason I decided I’d simply get up instead of waiting for the alarm to sound. Went to switch the alarm off only to find a grey switch staring back at me instead of a lovely shade of green, meaning I’d actually forgotten to switch it on 🙈………luckily the chaos that would have happened was averted and I went about getting into the shower……

It was one of the new Hull Trains that pulled into the station……seems like they think passengers no longer need their old lovely convenient luggage storage spaces to slide your suitcase in at ground level and now state they have overhead storage for medium and large suitcases…..Which I couldn’t possibly manage….🙈……so I had to park my large suitcase in the disabled bit in the hope that no one in a wheelchair needed it……WHY…….?

The obvious route is on the Cross Country Train avoiding London , but these are my least favourite train company and their prices are extortionate …….so for a 20 minute longer journey, one change at London instead of 2 on Cross Country, I went first class and it cost me £100 less than their standard class …….🙄 I know London, I’m happy on the trains so a no brainer…..so there I was trundling in the darkness at the start of a 6 hour journey to London first……good job I like trundling….

It wasn’t until we got to Grantham, half way, that the sun started to wake….

The journey actually went quite smooth…😳

Anyway back to the reason I was there…….after a lovely overnight stay with my friends, it meant a shorter journey (90 mins instead of 6hrs!) and a decent start time to Cosham…it was a dull drizzly day and of course, we were met by the dreaded ‘Delayed’ sign as we reached the platform. I txt Debbie eventually to say we’d left 15 minutes late and I had left in plenty of time so no panic necessary …….

I managed to get one piccie before the drizzle became a downpour……..and put paid to anymore sightseeing out of the window….

This was a totally new route through Salisbury, Romsey, Southampton to name three before arriving at Cosham, my destination for 24 hours…..

Debbie kindly kept me company by txt during the journey as I didn’t have a clue where I was but she was tracking the train, giving me updates, which was perfect and much appreciated……

Debbie, as promised, was waiting outside the station and we trundled the short way to the venue they use for staff events nearby the hospital. By pure chance there was also a Dementia group going on!

We sat outside the lunch room and chatted about this that and everything and then Debbie said how the hospital is just rolling out Allocate Roster Pro system, which was a real blast from the past as that was the very first roster system I worked on in my NHS Direct days…..they’ve only just got it.So how amazing that something I was involved in from the start, 15 years ago, has just been rolled out here………

Anyway, we went into the room and waited for everyone to settle. I’d been given an hour so I spoke about language, experiences, the hospital environment, environmental lies, the senses and much much more, including:

We’re often referred to as ‘Challenging patients’ but I refer to challenging staff. There’s a reason why we’re distressed and it’s up to you to find that reason. You need to enter our world as we simply can’t enter yours….”

 I always finish reading the Billy extract from my book as the time I’m given can bring out many emotions in people. So I like to end by making them laugh to release the tension…..

Sooooo many questions at the end. I can’t remember many but do remember them asking about environment, language and how it affects my daughters. Such wonderful questions. They then agreed to a piccie…

My suitcase was a lot lighter to take home as they bought all the books I’d taken afterwards, but the next speaker had arrived, so me and Debbie went and sat with a cuppa and were joined by 2 of the book club, which is where our relationship started…..and had a piccie…..

It was a wonderful end to a wonderful day. Debbie had supported me perfectly, even taking me to the hotel making sure the room had all been paid for and that I was happy with everything before taking her leave to continue on her long shift…..sometimes I just feel very lucky that dementia has brought all these new opportunities….well every cloud……..

 

Are we ‘celebratising’ dementia…?….

Are we ‘celebratising’ dementia…?” A comment from an academic on Twitter last week……not sure if there is such a word….but hey ho……

It was in response to one of my tweets so I can only assume it was angled at me and maybe other playmates, didn’t know the person but jotted a note down to write this blog, then couldn’t find the tweet again 🙄……but ‘really’, ‘celebratising’? Are we not just speaking out in public to show we CAN? To show we’re no longer being silenced by society?

I asked my dear friend Google for a definition of ‘celebrity’…. It gave me 2….

a famous person, especially in entertainment or sport.’….well no, that’s not me….

The other being:

the state of being well known….’

Well the dementia bubble is so small, yes I’m ‘well known’ in it, but even then, only in certain areas and many others have been around far longer than me and are more ‘well known’. I just talk along on Twitter whereas others use other ways…

 I have fun on Twitter because I use it as a silent support medium….I show my weaknesses quite openly, because I hope it helps others.

Have I made dementia a ‘soft’ subject….a subject not to be taken seriously? I don’t think so. My form of activism may be ‘soft’ but it brings new people into the arena, a new audience who is listening. I’m loud on Twitter because I love that forum – my silent world of conversation enabling my fingers to do the talking and my fingers are far more articulate than my spoken word.

Does that make me “celebratise dementia”…… ? I really hope not as that’s not what I ever wanted.

As my daughter Gemma said on Twitter recently we live in an “inherently disabling environment”,  surely any voice in any arena is a powerful message that we’re here, we won’t be silenced?

I can’t be the serious activist with all the Rights data stored in my head, because that’s not me – I wish I could sometimes but I can’t retain Human Rights data. Many others are far better than me at that sort of activism and equally, if not more well known for it.

Yes I’d preferred to be known as a mum, as an author who wrote a good book, but it was dementia that gave me that ability to succeed in an area I’d never entered before so I do have to give dementia some credit there. I would only be known as a mum if I didn’t have dementia and only by a few friends and my daughters, so, yes dementia has brought me many new friends, has created a new world around me – so if I’m known by more in this small bubble of knowledge that exists in the dementia world, does that make me a celebrity, or simply well known by some?

I like to show dementia warts and all because that’s the reality. I have fun, I have adventures, I have totally rubbish days where I wish it was the end….I enjoy the social contact that Twitter brings me…..me a ‘celebrity’ – I think not…… I just want people to listen to take note and to think……is that what a celebrity wants? I don’t think so….

To take the seriousness out of this and to show the fun side of me….I’ll show you the piccie my daughter Gemma took of me while we were shopping in Leeds at the weekend…..

Nope, I can never be serious for too long and laughter and fun help me cope with dementi….I’d probably cry otherwise…..

 

 

The Good Side of Twitter…….

Twitter has been more important to me lately during this ‘quiet period’ of not ‘doing’….
This silent world of conversation becoming a comfort. Conversations to listen in on and take part in. No talking aloud necessary just me, my thoughts and my fingers tapping away on my iPad.

I remember when I first joined Twitter I simply sat and watched this silent world and was in awe of its power to connect. It took a while to work out what to do and how this new world. at the time, worked. It was probably a month or so before I actually posted a tweet….now I’m hooked…😂

I can sit in perfect silence and have a conversation with so many people, something I could never do in person.

I’ve never found Facebook has the same impact for me. I feel like I’m intruding on Facebook, whereas on Twitter I feel like I’m contributing……just me and my opinion….

It’s introduced me to so many wonderful people and also many people with dementia from all over the country and the world, which is lovely. It also enables you to include people in a Tweet who normally you wouldn’t be able to contact, so a good ‘sowing seeds’ enabler as well.

There was a wonderful debate recently one Sunday.

An Admiral nurse called Deborah posed the question:

I’ve got a lecture this term from a professor who works on an acute dementia assessment unit & he uses the term ‘behaviours that challenge’ – I’ve queried this term -any thoughts?”

Sunday is often a quiet day on Twitter but that day Twitter came alive. So many people sharing their thoughts, their beliefs to a simple question.

I can’t find my contribution to the discussion but today my thoughts go something like this ………The so called challenging behaviour is surely a response to an unmet need. If you don’t address the need you won’t manage the behaviour.

It enables me to sow seeds with my blogs; to check I’m not alone in the thoughts I have; to hear other people’s opinions and views. It helps connect with a community I would never have access to if it wasn’t for Twitter.

Obviously Twitter has it’s down sides. Like the time someone with dementia did their very first interview and it went on Twitter and one ‘professional’ criticised and questioned her ability………I wonder if he considered the impact his comments may have had on that person to speak out again?

Thankfully the good outweighs the bad. I try to surround myself by positive people to keep me positive and Twitter often provides that support without even knowing it.

I know I’ve probably said all this before. I may have even blogged about it before, I didn’t check, but it made me smile today and that’s always a reason to celebrate something.

So Twitter may have been an alien concept prior to dementia entering my world, but now it’s world plays a large part in mine…….

Professional Questioning……

There’s one apparently ‘professional expert’ on social media who has constantly questioned the diagnosis of what he himself have labelled, ‘high profile’ people with dementia. This has led me to question his ‘professional expertise’.

He’s an ‘old age psychiatrist’ so not even a neurologist or expert in imaging, so why does he think he has the ‘expert knowledge’ to question when they/we’ve all had a diagnosis with proof?

I’m not sure why he sees it appropriate to publicly question and publicly diagnose when he’s not been involved in any of their/our diagnosis. So why does he continue to do this? He was at it again the other day, not directly at me this time, but one of my dear friends –  what makes a professional behave in this unethical manner?

As I’m sure I’ve said before, I no longer feel the emotion of anger – I have 3 states, happy, sad or content. So I find it incredibly sad when I see such comments appear periodically. It also upsets my daughters, which is even worse.

People like that are the reason why I continue to speak out. I won’t be silenced by ignorance and unkindness.

I wouldn’t wish a diagnosis of dementia on anyone but if he lived in any of our shoes for 24 hours he may change his mind. Does he think we/they ‘enjoy’ living with dementia?

If professionals are supposed to make you sad and depressed then he’s very good at his job. However, I’d really like to think he’s in the minority and many I’ve met have been glad to learn more about the reality to give them a better understanding of their patients and more insight into being able to help them.

I love Twitter, as most people are kind. They can question in a kind way.

I doubt this will ever be the case for this person as he’s continued to do this for the last 4 years. How sad for his patients …….. I no longer engage in conversation with him – what’s the point?

And now I’ve used the block button …….

A Triple whammy day……

Yesterday normality resumed and September started with people going back to work and some children going back to school😊 and for me it meant the start of ‘doing’ and a busy month ahead.

Now most people, after a break, may have eased themselves in gently with just one event….mmmmm…..well I had 3😳 but all local.

The first one was at Humber NHS Teaching Foundation Trust and the monthly staff induction day. I attend this each month when I can along with staff from the Humber Research Team. We talk to new staff about their role in promoting research in the Trust.

Well today it was the turn of Lauren and Emma to be delivering the session along with me. Lauren kindly picked me up from home and we arrived at Trust Headquarters for me to be met by a lovely cuppa tea and catch up before we headed down. Just enough time for a piccie – Emma, Me and Lauren…..

We arrived to find Michelle Moran, Chief Exec, coming to a close which meant it was our turn next. The room was packed with new starters.

The whole point of this session is to show how easy it is for them to promote research to patients and the Research Team themselves will do everything else. My bit involves saying:

You may be sat there thinking, well what’s research got to do with me, it’s not part of my job? We have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, all coming on board and promoting research. To normalise talking about research would normalise involvement.”

A nice round of applause finished off the session before our time was up and it Lauren took me back home…..

The last two were both by FaceTime. Firstly with Vasileios Stamou from the ANGELA Project. The purpose of this research study is seeking to understand how to improve support for younger people with dementia and families/supporters.

Vasileios was calling me on Skype….on which I often get in a pickle……and today was no different. Once he called me at the agreed time, I couldn’t remember how to make him appear on the screen or how to let him see me🙄 so I just kept pressing buttons until something happened.
In the end he could see me but all I had was a frozen piccie of him😶 but at least I could hear him.
He only wanted to hear of the positive help I’d received from services, so I immediately said that wouldn’t take long as I’ve had no help from services. My help has been from Peer support and my daughters so we answered the questions using those examples.

I also spoke of the support from social media as that also plays a huge part in keeping my outlook positive.

Peer support is important because we support one another; we show each other what’s possible; we don’t judge; we share a common diagnosis and that’\s what brings us together

Social media helps me keep connected; helps me to communicate in my own time and by typing instead of speaking and it also helps me educated.

And finally my daughters are the most important influence and support. We’ve learnt to talk like never before. It’s important for them to have the same confidence in my ability for me to keep seeking challenges and new adventures. I couldn’t do any of this without them.

It was lovely talking to Vasileios and the ANGELA project is a wonderful study. More can be found here:

http://www.ucl.ac.uk/psychiatry/the-angela-project

My final chat for the day was with an American doctoral student, Jenny Heuer, from Atlanta, Georgia. Her dissertation is a qualitative study where she is interviewing individuals with early-stage Alzheimer’s disease.

When my book was published in America I learnt that they only know it as Early Onset and never use Young Onset, which is interesting.

Anyway Jenny agreed to FaceTime me at 5.30pm which meant lunchtime for her so suited us both. FaceTime is so much easier than Skype as people just appear and you don’t have to remember to do anything.
So it was that Jenny rang at the agreed time. She said:
This research is designed to gain greater insight into the experience, feelings and preferences of persons living in early stage Alzheimer’s disease”

Before we started we went through the consent form. She was saying that very little research has been done on the voice of those living with dementia. Most has been done through supporters or through the medical community.

We went through the ubiquitous mini mental test……before answering questions on the reality of living with dementia, how family, friends and the community see you post diagnosis and what I thought of the medical community….
Jenny shared with me her thoughts on the American viewpoint of medics and how we still had so far to go in educating – but America did seem to be lagging behind in so many ways. However, with the help of researchers such as Jenny maybe there’s hope of a catch up…..It was fascinating taking part in an American study. Lovely to talk to Jenny and hearing the differences and similarities that exist between the two countries.

I asked if she minded me posting a piccie and she was more than happy….😊

My Love of Social Media….

When dementia strips away your ability to have a conversation in a crowded room and strips away your ability to speak a sentence without forgetting the ending half way through, the world of social media opens up a whole new wonderful silent community who will chat and listen at any time of day without a voice being heard……

My latest contribution to Psychology Today….

https://www.psychologytoday.com/blog/which-me-am-i-today/201808/the-advantages-social-media

 

 

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

 

 

The Advantages of Twitter

As some of you know, I’ve recently ventured into” Twitterland”. I hadn’t understood what it was all about before – it never made sense and it seemed trivial………..

well how wrong was I!!!

Twitter has been so valuable in so many ways. None more so than for ‘meeting’ people I would not had a chance to meet under any other circumstance.
Twitter also enables me to ‘Tweet’ as a ‘Tweeter’ and not necessarily as someone with dementia. Unless people take a look at my profile they may not realise I have dementia.

I use Twitter to raise awareness of dementia . The people I’ve met have sometimes had the same views as myself and sometimes different. Conversations have been lively and often enthusiastic. Due to the word count restriction you have to be precise and it also means people are more likely to read what you’ve written.

Twitter is also a great way to find out immediate reaction to news and to find the news before other mediums as well!

Social media has an important role to play on personal development for clinicians and is especially useful for students.

I think all students should be directed to Twitter, especially for the weekly chats that take place.

It enables them to make connections with people – ‘networking’ on line. With more people with dementia venturing onto Twitter, it opens up access to people with dementia to those who would otherwise not have  heard our voice. I can direct them to my blog for more detailed knowledge of issues I’ve written about.

I was at a conference somewhere recently where they had a workshop to show the value of social media for personal development. You have access to a wider range of people from all over the world let alone all over the country.

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One initiative close to my heart which only exists because of Twitter is the #whywedoresearch initiative. This has brought together researchers from all over the world to extol the virtue of research of all kinds. I’m it’s first public ambassador and now we need to find ways to encourage more of the public to become involved.Public involvement is key as without willing volunteers researchers of all types, social, clinical and technological, can’t test their theories. The team, led by Claire Gibbs from James Paget Hospital, have been nominated for an award for this very initiative by the Nursing Times – fingers crossed:)

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At conference events Twitter comes into it’s own as you can instantly react to a speaker and tweet comments. Usually I’ve found they’re positive comments but I recently tweeted about the content of a speech being too technical for lay people and it had the effect of the next speaker adapting their speech – instant result! It’s a great way of sharing good news with the rest of the audience who you aren’t sat with but also for those not attending the conference to follow what’s going on and see what they’re missing! Yesterday I couldn’t go to the Alzheimers Society Annual conference due to the tube strike – 😡 – but I was able to see what was going on by looking at the # on Twitter – including a picture of my empty seat! 😢

Social media is now the new medium for disseminating information. It’s taken over from the written form – e.g.newspapers. More people read newspaper content on line now than the written form. While Facebook remains the most popular social media site, its overall growth has slowed and other methods are increasing – Twitter, Instagram, Pinterest, – and I’m sure there are probably others I’ve not heard of.

So far I’ve only ventured into Twitterland but at a meeting recently, I did say I would succumb and venture into Facebook land as this is also apparently a good medium to raise awareness.

I’ve briefly opened the site – had a look – didn’t understand – so closed it quickly – will have wait until my daughters have time to explain and give me a tour:)) Facebook here I come……….

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Using Social media

Billy has finally given me back my Ipad – he’s so sad to lose my attention he’s so glad to have me distracted again so he can get me out of his garden ……I might not have been writing blogs but I’ve still been busy…….

Twitter #oktoaskhour

I was asked to be on a panel on Twitter to answer questions on dementia research last Wednesday evening. Each week at 8pm the session had been on a different topic. The week before it was on Strokes so I made sure I watched the process happening as I didn’t really have a clue what to expect. Last week I started to panic as I found it hard to follow what was going on and the speed of everything was very confusing…………
So when I found Anne Hatton was doing a similar thing about patient participation in dementia an hour before my slot I thought this would be a good opportunity to practice. How glad was I that I did that!! It got me use to always adding the # to each response (don’t ask me for the technicalities as I don’t do ‘technical’.) It also made me concentrate on one conversation at a time. Imagine you were in a room full of people, all having different conversations and you’re trying to follow them all………very confusing…….well it’s like that on the Twitter session without the voices, just words.
I spent half an hour with them and learnt so much ready for 8pm. The questions started coming in dead on 8 and they never stopped until the 9pm finish. Lots of topics were raised and Gemma popped up asking a question about consent and ethics – was nice to see a name I recognised:)
Questions were asked around the task of getting public to take part in research. I voiced (or worded) the opinion that there was a misconception that research = guinea pigs and if they used the word ‘involvement’ they would get more buy in. I also said that to include patients from the start would make them feel valued. We have to make taking part in research, both social and medical, the norm and accepted.
If the session had gone on more than an hour I think my head would have exploded – it was very intense, very fastpaced and brilliant. I’m not sure how often these sort of things happen on Twitter but they are certainly a brilliant way of using social media of getting across a point. Next week the session is on mental illness – Weds 13th 8pm #oktoaskhour

 

Billy 'helping' in the garden
Billy ‘helping’ in the garden

 

“Twittering” Hour

My new found skill of ‘twittering’ gets put to the ultimate test next week.

As you may know, I’m passionate about research and next week I get to combine promoting research with my new found skill.

As part of the National Institute for Health Research’s ‘OK to Ask Campaign’ this year (which seeks to encourage patients and the public to ask about getting involved in research), and in the run up to International Clinical Trials Day on 20th May, they are running ‘OK to Ask Hour’ on Twitter. They’ve been running a series of 1 hour long  #oktoask session via Twitter over the last few weeks and this week was the turn of ‘strokes’ . Next week it’s the turn of dementia.

I’m part of the dementia panel on Weds 6th May 8-9pm. The panel consists of a specialty representative, a research nurse,charity representative and patient representative, who will answer the public’s questions. For the dementia hour, they are:
• Dr Adam Gordon – Consultant & Honorary Associate Professor in Medicine of Older People in Nottingham, UK. Honorary Secretary of the British Geriatrics Society
• Nichola Verstraelen, Lead Dementia Research Nurse – Award winners in clinical research nursing dementia. Team Lancashire – Nursing Times
• Dr Laura Phipps, Science Communications Manager  – Alzheimer’s Research UK
and me as the patient representative

Using the hashtag #oktoaskhour we will encourage patients, carers and the public to ask questions about clinical research into dementia – not sure I understand what that sentence means but I’m sure all will become clear -ha!

It will be interesting to see the response, if any, from the public. I’m not sure how accessible Twitter is to those targeted and maybe it’s a new concept or it’s certainly new to me but very exciting:)  It will be well publicised on Twitter so let’s see how it goes – very excited.
Just hope I don’t get my twitters muddled…..
Also, take a look at the new Join Dementia Research you tube video

https://m.youtube.com/watch?v=BRbpXJ5WCLI