Are you a carer?





Please watch my short film, which includes families and carers reading from the letters they sent me.






If you would like to share your story or make a persoanl pledge to make a difference please email tommy.whitelaw@alliance-scotland.org.uk

Saturday, 4 March 2017

Guest Post via Shaun Maher Everyone has a voice that needs to be heard

This weeks guest blog post comes from a very dear  friend  Shaun Maher, Strategic Advisor at Scottish Government, supporting the development of ‘What Matters to You?’ health & social care system.  You can follow Shaun on Twitter at @S4Maher
The thoughts in this blog are inspired by a video story shared by Louise page  and Alan Ainsley about their experiences of the healthcare system.  You can listen to their story here and here.  The first link is a shorter version, the second provides a deeper insight and is a little longer.
Listening is one of the most important and powerful things we can do.  It not only has an effect on the person listening, but can also have a profound impact on the person who is being listened to. The act of listening honours another person’s story or opinion and can make them feel valued, important, cared about. And the listener – what’s in it for them?  They gain deeper insight and understanding of the thing the other person is talking about, or indeed the person them self.  But not only this, they can also gain new perspectives and understand more about how the world looks and feels through another person eyes.  Listening helps us to develop empathy, compassion and understanding.
Yet, listening, really listening, can be very difficult to do well.  We are so busy! Our mind is full of all the things we need to do, want to do and have to do! Our mind is often a busy noisy place with lots going on – it can be difficult to find space to think sometimes let alone listen properly to what someone else thinks!  Not only this, by the time we reach adulthood our view of the world and our belief systems have become much more fixed which means understanding different or opposing world-views or opinions can be difficult.  We have a tendency to filter everything we hear and see through the beliefs we hold, dismissing or downplaying anything that disconfirms – enlarging or emphasising anything that agrees.
Good listening, or perhaps what we might call deep listening should be a core skill for all of us, but especially so for people who work in the caring professions.  Our job is all about listening, and listening well.  Traditionally, by listening to someone we make our diagnosis of their support, care or treatment needs – this is what we do. But do we really listen deeply to them and truly hear their voice and try to step into their shoes? Or do we filter what we hear through our professional perspective and belief systems?  Listening isn’t about us always doing things to or for people – listening can be the end rather than just a means to an end.  This deeper more purposeful listening helps to generate empathy – a powerful ally to help us generate high quality compassionate relationships focused on the things that really matter.  But being listened to also has many benefits for the person telling their story too.  It can help to build self esteem and confidence as well as generating insight and discovering new strengths.  Sometimes it is only by telling our story that we realise how well we have coped and the resilience we have within us.  So, it’s important to remember listening isn’t always about doing – often it’s just about listening and listening well.
The ‘Levels of listening’ framework from Theory
slide1
is a helpful tool to help us listen more deeply and also to notice when we aren’t.  This framework describes four different levels of listening that can help us to move from a place of superficial listening to a place of deep listening that opens our mind, heart and will, facilitating a much more meaningful, purposeful connection with another person.
Stories are a powerful medium to help us appreciate and understand the impact of good listening, or the harm caused by failing to listen well.  Louise  and Alan’s story, along with Tommy’s story of his experiences caring for his mum are two such examples and there are many others too.  Louise  and Alan’s experiences have much to teach us and the story has been given as a gift to help us understand more deeply the impact good listening. It’s a powerful story with a powerful message about the importance listening deeply and connecting with a fellow human being.  When the listening was good the care was good, when the listening was superficial and clouded by the professional perspective the quality of the care was poor impacting on psychological wellbeing, quality and quality of life – perhaps even causing harm?
I commend this story to you and ask you to think of it as a gift from the heart of Louise  and  Alan to your heart.  Listen.  Listen deeply and focus on what really matters.

Celebrating People and 12,000Pledges to Make a Difference

                            

                                



                       


I thought I might share a wee update on our ‘Make a Difference’ Campaign and tour as we reach more than    12,000 Personal Pledges to make a difference




We have engaged with nearly  70,000 people in person over the last 2 years at over 500 talks  and events , collecting pledges from health and social care professionals and we’d like to share some of their inspiring words, and help celebrate the work they do to putting pledges in to practice make a difference


We are very inspired by the different ways Individuals, Hospitals Universities Care Homes and Care at home teams have been putting pledges in to practice

You can read every pledge here at  https://dementiacarervoices.wordpress.com/pledges/



Read our case studies of how hospitals, universities and care homes are putting people at the heart of their work at:

 https://dementiacarervoices.wordpress.com/case-studies/  



We have a short film to celebrate people and pledges 

Dementia Carer Voices - The story so far https://youtu.be/HQNgbIVimOs





NHS Ayrshire and Arran made a film in partnership with the ALLIANCE and the University of the West of Scotland which shares the journey of the campaign and the impact it has had on the staff. 

The video is available to view at www.youtube.com/watch?v=bGLwzE8YAyM.





Thank you to all who have pledged and supported the campaign to date .We look forward to more meeting more people  who are making a difference for people living with dementia, Families and carers 

Thank you from all the  Team 

Dementia Carer Voices


Tommy












Tommy Whitelaw, BCAh
Project Engagement Lead
Dementia Carers Voices
Health and Social Care Alliance Scotland (the ALLIANCE)
349 Bath Street
Glasgow G2 4AA
Tel: 0141 404 0233
Mobile: 07921395712
Charity No. SC 037475 
Company No. 307731
dementiacarervoices.wordpress.com
Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Friday, 3 March 2017

Missing Me. - A poem from Tracey Shorthouse

Today we bring to you a poem from Tracey Shorthouse called Missing Me.  You can follow Tracey`s story via @TraceyShorty28 and find out more over on her blog.
Thank you Tracey for letting us share you inspiring words.
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Missing Me
Sometimes I miss me, the old me
The girl who liked to go dancing
Now the music seems too loud
I used to spin around with glee
But at least I still love laughing
But I don’t like to be part of the crowd
At times, the noise is too much for me to cope with
Like angry bees stuck in my head, buzzing constantly
I miss going out and about, being part of the crew
But at least I still believe in magic, spirit and myth
And I still believe in honestly
But sometimes I still get blue
I miss driving around, going to different places
And sometimes I do miss work, hard to believe
And I do miss my memory at times
But I still remember some faces
And it’s not like me to grieve and grieve
Although my tastes have changed, I still like my limes
I miss watching the dramas, but get lost easily
Sometimes it’s hard for me to tell fiction from reality
Then I get scared which was never like me
But at least I live peacefully
And will always be free
And I am lucky that I live between the countryside and sea
I loved how I could see the changes of the seasons when out and about
And how the skies change depending on the weather
That was the best thing about being a community nurse
At least, not working means that there is no one left to shout
But who cares as long as we are together
And I am determined that the dementia will not get worse
As friends and family, we have each other’s back
Although it is also nice to be that someone’s special
Someone to see beyond and just see me
It’s nice to be alone, but also nice to be part of a pack
But I also don’t want to meet a devil
And I don’t want to be seen to flee
I don’t like the fact that I get tired
Or that my speech gets slurred
Or that I have to walk with a stick sometimes
It seems mad that I am admired
By some, my vision sometimes gets blurred
But now I have retired I now write rhymes
But on the upside, I am still able to walk
I still garden and explore different areas
By using public transport
Sometimes I have to steed myself as want to balk
But I try not to take myself too serious
And occasionally I still allow myself a glass of port
So although I do miss the old me
I am getting used to this new person
I am still positive and full of beans
And can still make the odd stew
And I quite like this new version
Of me and my family genes
Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thursday, 2 March 2017

Older People in Acute Care Improvement Programme Delirium Video Links


                                     



Older People in Acute Care Improvement Programme
Delirium Video Links

The Older People’s Acute Care team has created a series of 3 videos to complement existing work on delirium careThe videos could be used in a variety of ways to continue to raise awareness of the importance of listening to family membersand to further engage a range of partners. The videos highlight three individual stories told by women of their mothers experience of delirium. Links to these stories are below:

Delirium: a daughter's perspective

Lynne’s Story (1:49)

Adrienne’s Story (2:31)

Sandra’s Story (2:28)

In addition key messages from all three stories are reflected in separate brief video clips focused on First Signs, Causes, Experiencing Delirium and Help & Reassurance.

These shorter segments could be used for teaching sessions, to generate discussion as part of presentations and at conferences and exhibitions to match the needs of individual audiences. Links to these videos are below:

First Signs of Delirium


Causes of Delirium


Experiencing Delirium


Help and Reassurance


My Name is Tommy,I cared for my wonderful mum Joan

My name is Tommy Whitelaw, and for five years I was a full-time carer for my mum Joan, up until she sadly passed away in September 2012.
At the time my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” What I soon learned as her carer, was that dementia was an unpredictable illness which brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to have suddenly changed again.I wondered whether the struggles I faced were mine and mine alone, and how other carers who had been through the same journey as I was embarking on, had managed to cope. This was the basis behind my first venture in to the world of awareness raising – the‘Tommy On Tour’ campaign, which involved collecting life story letters from people across Scotland caring for a loved one with dementia.
The hundreds of letters I received let me know that the challenges I faced were far from unique to my own situation and I have to say meeting and speaking to others in the same situation was one of the most beneficial things I could have done.
An issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia and the way in which we perceive this illness as a wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.
Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.
This is something I am passionate about promoting as I build on my previous awareness raising work, as Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices Project.
The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia, with a view to raising awareness among health and social care professionals, and wider society of its impact on families and the importance of empowering carers in carrying out this difficult but vital role.
A key focus of my talks through the project is to highlight the impact that inspirational health and social care professionals can make to the journeys of carers across Scotland. People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer if I was propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world.
The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed many touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, and continue to do so now.
Dementia Carer Voices pledge background
Dementia Carer Voices has now gathered over 10,000  personal pledges as part of the “You Can Make a Difference” campaign. The campaign encourages people to listen to the experiences of people who have cared for a loved one with dementia and to think how they can make a positive difference in people’s lives. The team are delighted to have gotten such a strong response, and would like to take this opportunity to reflect on our journey up until now and how we have gotten to this point.
A fundamental aspect of the campaign has been about involvement. Throughout the UK tour, we have engaged with many thousands of  health and social care professionals, students, MSPs and members of the public, and have noticed a distinct increase in the number of pledges we have received when people are encouraged and supported to do so by colleagues and friends. We would therefore like to ask you to share this campaign, to encourage people you know to get involved and make a pledge to make a difference in the lives of people who have dementia, their families and carers. Through our own dedicated blog site, twitter account and website, the campaign is easily shared, and links people to a range of information.
Pledges can be submitted via email, twitter @DementiaCarerVo or on the blog site, and are also collected at every talk. We would very much appreciate it if you would promote this campaign; the talks and our films and encourage people to reflect on what they can do and how they can make a difference.
Resources
Dementia Carer Voices took the Make a Difference campaign to the Scottish Parliament in October 2014. View the pledges from First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland.
NHS Ayrshire & Arran and the University of West Scotland  (UWS)  were key partners in the ‘#make a difference’ pledges and dementia awareness campaign.  This video includes interviews with First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland, Fiona McQueen (Executive Nurse Director NHS Scotland), Professor Paul Martin (Deputy Principal UWS), Derek T Barron (Associate Nurse Director – Lead Nurse North Ayrshire Health and Social Care Partnership), Janice McAlister (Alzheimer Scotland Dementia Nurse Consultant), Lynn McLaughlin (Senior Charge Nurse).
Newsletter
View the May/June 2015 Dementia Carer Voices Newsletter.  Subscribe to the newslettermailing list.





Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

‘You Can Make a Difference’ Campaign add a personal pledge here

       
Taken From our pledge site 
We launched the ‘You Can Make a Difference’ Campaign in February of this 2015 and it has been so inspiring to see it grow. Tommy Whitelaw has given over 500 talks since , with nearly 600 scheduled in total, reaching to date more than 65,000 people in person at the talks and we wanted to really thank those who have gotten involved and made it all possible. 
The talks involve  Tommy sharing his own personal experiences from caring and the experiences of others who have written to him since he went on tour in 2011, to help people understand some of the issues that carers face, and what we can all do to help overcome these issues.

and to make a pledge about one key action they could take to really have a positive impact in the lives of others. Some of the pledges have been about a simple change in attitude such as “I pledge to listen with open ears and open heart.” This type of change is one that we can all implement in our own lives, no matter who we are, where we live, or what we do.
The campaign  has really shown the difference that every single person can make, no matter how small it may seem. This has been through asking people to reflect on carers experiences, 

as of today more than 12,000 Nurses,Hospitals,Universities,Students,Care Homes, individuals  Have Now personally Pledged to 'Make a Difference for People Living with dementia,Families and carers .You can read Case studies Here 

The interactions that we have with people can be vast and varied. They can also be short and infrequent, and more often than we realise, the occasional conversation can be the only interaction people have with someone in their community. There is an abundance of research which shows that isolation leads to poorer health and wellbeing, but on a basic human level, it is simply wrong that people feel so alone. 

Time and time again, carers tell us that a little bit of time, listening and understanding can make an unimaginable difference during what can be a very difficult and lonely journey.  With this in mind, we would like to encourage everyone to reflect about what they could do to help, and to make a difference.
If you would like to make your own pledge, we would really love to hear about it! Please send us your pledge via email to  dementiacarersvoices@alliance-scotland.org.uk or tweet us @dementiacarervo. Let’s make a difference!
                                           

    
Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

2 talks South Lanarkshire Carers Network and New Lanarkshire College March 1st

Hi 

With great thanks to  Joyce Brownlie Carer Resource Information Officer joyce@slcn.co.uk  
for the kind invite to speak at South Lanarkshire Carers Network on the morning of March 1st 

The event is being held Blantyre Miners Welfare Community Resource Center, 3 Calder Street, Blantyre, G72 0AU from 10:30 to 12:30 

I am really looking forward to meeting everyone who is part of the network 

I will then be heading over to New Lanarkshire College to meet  speak with Health and social care students who attedn the college from 2pm - 4pm  with great thanks to Kate Mackay Health lecturer and twitter friend @KateMackay27 for the kind invite 

I am really look forward to meeting everyone and learning more about the work of the carers network and college on the day 


tommy  



Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg