Sunday, 17 April 2016

Our April May Newsletter is Now Available to Read or Download


Welcome to the latest edition of the Dementia Carer Voices Project's newsletter, which will keep you up to date with our latest activity.   

This month's highlights include our call for stories as part of 

National What Matters to you Day, Director Irene Oldfather and 

Project Engagement Lead Tommy Whitelaw featuring on the 

community channel and Ffion's story.



Monday, 11 April 2016

interview from the community channel on 'Asking What and Who Matters

last Sundays was a  follow up to Do Something Brilliant documentary that aired last year which followed me on my ' Make a Difference ' tour you can read about here and watch again here. last years mini documentary 

the community channel this week broadcast a follow up to find out how the tour was going 

you can watch the full interview from this week at the link HERE 

Thanks for reading my blog, You can now view my 8 short flims here!
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Thursday, 7 April 2016

Speaking Dementia Ambassador teams South Lanarkshire Council April 29th


With great thanks to Kirsty Mann for the kind invite to speak to the  Dementia Ambassador teams South Lanarkshire Council April 29th ,The Ambassadors work in older people services, day care & residential, Adult services, Field SW teams & OTs.

I am very honored to be invited and look forward to meeting everyone on the day and speaking about our 'Make a Difference'  campaign and wider work  


Thanks for reading my blog, You can now view my 8 short flims here!
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Monday, 4 April 2016

Campaign tells staff "You Can Make A Difference" for people living with dementia,Families and Carers


The Health and Social Care ALLIANCE’s Dementia Carer Voices project  on going campaign for  calling upon  Health and Social Care professionals to consider how they can make a difference for  people living  with dementia and their carers.

The team is  taking the You Can Make A Difference’ > campaign to staff across the country to highlight that no matter what their role, everyone working in Health and Social Care Services has the potential to transform the lives and experiences of people with dementia and their carers, often in seemingly small ways. 

Staff will be given the opportunity to reflect on carer’s personal stories and make a pledge based on one key message or action that they will take away and apply to their everyday practice to make a difference. 
Some of the pledges received so far include;

“I pledge to listen with open ears and and open heart.”
“I pledge to view the person I care for as all that they have been, they are and all that they can be.”
“I pledge to take the time to speak to the person’s family and provide support to make their lives as fulfilling as possible.”

To date the campaign is approaching 10,000 personal pledges with Hospitals,Nurses,Students,Care-homes
adding pledges.You can read all the pledges made to date at the link Here along with Case Studies on the different  ways the above are using pledges in different setting HERE   

Tommy Whitelaw, Dementia Carer Voices Project Engagement Lead, said: 
“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. In my case it was a district nurse who not only gave me practical advice about how to take care of my mum, but sat down, put her arm around me and told me ‘You’re doing all right. You can make that difference.”

Irene Oldfather, Director, the ALLIANCE said:
 “This work reaches out and touches the hearts of many people, not least Health and Social Care students and professionals. These interactions are an ideal opportunity for staff to pause and reflect on what is really important to the people in their care.  Make a pledge, make a difference.”

For more information on the campaign and to find out how you can submit your pledge, visit >

Thanks for reading my blog, You can now view my 8 short flims here!
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Speaking Specialist Speech and Language Therapist event Queen Margaret University April 22nd


with great thanks to  Helen Maclean Specialist Speech and Language Therapist for the kind invite to speak at the Specialist Speech and Language Therapist event Queen Margaret University  April 22nd 

I am very honored to be invited and look forward to meeting everyone on the day 

Specialist Speech & Language Therapist event Queen Margaret University April 22nd  

9.00-9.20         Arrivals, tea and coffee provided
9.20-9.30         Welcome from Lisa Fox, Chair
9.30-10.30       Rebecca Kellett, Speech and Language Therapist, NHS Dumfries and Galloway
10.30-11.30     Tommy Whitelaw, Dementia Carer Voices
11.30-11.50     Break
11.50-12.50     Jim Law, Neuropsychology, NHS Highlands and Islands
12.50-13.45     Lunch
13.45-14.45     Andy Lowndes, Playlist for Life
14.45-15.00     AGM, presentation of accounts
15.00-16.00     Dr Maggie Ellis, St Andrews University
16.00-16.10     Close of meeting

Thanks for reading my blog, You can now view my 8 short flims here!
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Sunday, 3 April 2016

2 talks Chester April 8th - Chapel House Dementia Resource Communityand University of Chester


With great thanks to Cathrina Moore RMN RGN Admiral Nurse Chapel House Dementia Resource Community for the kind invite to speak at the Chapel House Admiral Nurse fundraiser on April 8th ( more details on the poster  below )

Catherina has also arranged for me to speak  at the University of Chester at 2pm on the same day with thanks to Victoria Roberts Senior Pre-Registration/ Programme  Administrator University of Chester
Faculty of Health and Social Care for the great support to make this happen 

Thank you Catherine for the great honour  and kind oppertunty 




A letter changed my life,our life stories can bring help and understanding


This campaign is based on the life stories thoughts and opinions of people and there are a few reasons why I both collect and believe in them, the stories collected to date have been part in much awareness dialogue with Government Local authorities including motions at councils and report by SW departments, They have been the heart and soul of many talks across the care sector ,Universities colleges ,carer centers and beyond 

All if which I feel are important and in their own  way helping raise both awareness and understanding .all the afore mentioned are based on our lives in our words. More importantly I collect life stories because our lives matter .

My mum like to many others was to often was viewed upon as just a wee woman with dementia and all that had gone before forgotten or ignored the greatness of her life given to little value ,time or discussion and that fills me with great sadness .If we use only the journey of dementia as a starting point ,then how can we truly help or understand the best way to interact ,encourage and allow people the respect dignity and time they deserve .so life stories I HOPE  help tell the whole story and  help show the impact dementia has on many people lives .if we understand the impact then we understand best how to limit it and give families the best support to love ,cherish and succeed  

A letter changed my life
My personal reason for collecting letters and life stories is the fact a letter changed my life .Before coming back to Glasgow to visit my mum a visit that ended with my mums diagnosis of dementia and the beginning of a five year struggle to understand and cope .My then long term girlfriend and I had Just split up in fact I was coming home for mum to put her arms round me as she had done so many time before and made things betters .For the first time I had to truly put my arms round mum as she was in more need of help and support than I was .Both my girlfriend and I traveled constantly with our work and for the last years together and in so many ways my girlfriend tried to tell / discuss with me how things had to change ,how we were getting older ,how we never spent time together, along with settling down and children. The more she tried to discuss lour future the less I heard .the more she shouted ,whispered even in the most intimate of discussions the less I heard I always seemed to avoid a discussion after all I was happy I was traveling ,having a great time and always used the same avoidance I am just home or I when I get home in 3 months we will fix things .I got away with this for too long 

.On my last journey away ,I was going to America for 3 months I opened my suitcase on arrival and inside founds a letter ,a letter that broke my heart but a letter that showed the impact my actions ,my inability to listen ,me selfishness and many other actions where having on someone’s life. Someone I loved, someone who gave me so many chances and tried in so many others ways to ask me to just listen or try and understand and on reading that letter I understood more about myself than I have had before and she was right I was affecting and holding back her chance to live the best she could
So a Letter changed my life, that’s my personal reason for believing in and collecting them I hope to take them to all who need to read them to try and help them understand how the actions of others can have such and impact on lives and the actions of others can  also change lives for the better and to truly help someone you have to take time to listen and understand them
You can share your story at

Tommy WhitelawDementia Carers Voices

Friday, 1 April 2016

Speaking “Leading the Way and Meeting the Challenges Conference Keele University


With great thanks to Dr.Wynne Thomas Senior Teaching Fellow / Academic Conduct Officer
Keele University School of Medicine for the kind Invite to speak at this event 

I am very honored to be invited,

You can find out more about the day and how to register at the link  here


The conference provides an unique opportunity to focus on  the currents issues in leadership within the NHS for all healthcare practitioners. 

It will help the delegate  develop their leadership practice, become more resilient, self-aware and respond with compassion to others in a challenging healthcare environment.

It is open to all allied healthcare practitioners, nurses, midwives, doctors, radiographers, pharmacists and physiotherapists.

Confirmed Speakers so far:

If you have any queries relating to your booking for the event then please contact the Keele Conference and Events Team who are managing the bookings by email on by telephone on 01782 734600.

If you have any queries relating to the conference programme itself then please contact Dr Wynne Thomas by email on .

Bookings Close on Sunday 8th May

Turning good intentions into purposeful action by Shaun Maher


I am so very honored to share this Guest post from my friend Shaun Maher Strategic Adviser for Person-Centred Care and Improvement

Just over a year ago Shaun invited me to speak for him at the person Centered Scotland Conference
and I have followed his work and on Tiwtter @Shaun4Maher ever since I am very honored to share this post on Making A Difference

we have had so many  amazing pledges on our Make A Difference Tour from so many inspiring people,I hope this helps  with how we can fulfill and how we can all make a difference

The intents and desires of the heart: turning good intentions into purposeful action
It has been both a privilege and inspiring to hear Tommy’s story and listen to his message – life is one big love story in which we all have a role to play.  As caring professionals we are in an especially privileged position often spending time with people at some of the most momentous or traumatic times in their lives.  A
new life entering the world; facing up to serious illness; recovering from an
injury  or perhaps the loss of a cherished parent?  These are the most
memorable, meaningful and often challenging times in people’s lives and in our daily work we have the opportunity to support them, encourage them and walk alongside them.
Yet all too often in the hustle and bustle of a busy day we forget about this unique privilege – the honour of being a visitor in someone’s personal love story.  Not taking the time to find out what really matters to them; a hasty response or a word spoken a little more harshly than it should have been. These lapses pass quickly form our memory in the bustle of the day, but what about the person? Do they forget so readily?  The daughter seeking information about her Mum at a

time of crisis?  The young Dad (or Dad to be) that just wants to be as close as he can to the most precious things in his life? Do they forget so readily?  A careless response by us becomes an experience, even a trauma, carried by that person for the rest of their life.  Amongst many things Tommy’s story reminds us of this truth.
The spirit is willing but the flesh is weak
So how do we take the highs and lows of Tommy’s story and turn them into something positive and lasting?  How do we improve?  It’s been wonderful to see the desire amongst those who listen to Tommy to make a pledge to “make a
difference”.  More than 3000 people have made personal pledges to keep the personhood of all those they interact with foremost.   In one way or another people listening to Tommy have re-connected with their core purpose and recognised that the time has come to take action and make a difference.  The “pledgees” range from support workers to chief nurses, from chief executives of national healthcare systems to porters and domestics – truly reflecting the message that person-centred care is everyone’s business.
The pledges are usually framed by the words “I promise to….”  I will always…”    These are honourable intentions and they are based on the strong values stirred
up in the hearts of those who hear Tommy and Joan’s story. But what do they look like in action? Even with the best will in the world, do they always happen?  I think if we reflect on our own experience we realise that despite our best intentions we are at best patchy – the spirit is willing, but the flesh is weak!

Transforming good intentions into actions and making these behaviours part of our daily routine is probably the single biggest challenge. Consider this example. Tommy asked me to write this blog in November 2014.  With a strong desire in my heart to help I agreed and told him I would have it with him by the end of December.  So what happened?  My intention was good.  I truly meant what I said. But absolutely nothing happened!  The reality is that other things came along and the busy-ness of the day job squeezed the memory of my commitment and the desire to do it out of my consciousness.  I would perhaps remember as I flopped down on the sofa at the end of a busy day and think: “ah I’ll do that
tomorrow…” but as we know, tomorrow never comes!  This is the reality for most of us.  The scale, pace and technicality of the modern world, and especially the health and care system, means that we can’t take it for granted that we will always remember to do the right thing,  to say the right thing and treat people as they should be treated.  We need prompts and reminders to help us.  We need to design a more person-centred system to support the growth of a truly person centred culture.
Purpose, Measures, Method
When we start with a strong sense of purpose we are in a good place.  The
pledges that we have made to Tommy reflect that strong collective purpose we feel.  But to get that purpose into a reality the next thing  we need is measures – DON’T stop reading just because I said measures!!
By starting with purpose measurement is made much easier and much more meaningful.  In this context measurement can be as simpleas observing (or reflecting on) whether the thing you wanted to do actually occured?  Keep a tally or watch what goes on around you for 5 minutes.  For example: “did I always ask every person about the things that are really important to them at this time?” Yes or No?  If not, why not? And what could I do to remind myself to do it?

Your chances of success are much increased if alongside purpose and measures you have an improvement method. There are lots of methods out there – pick one and stick with it!  We have widely used the Model for Improvement (MfI) in Scotland and I think it is probably one of the simplest and most adaptable methods out there.  It starts with three simple questions:
  1. What’s the thing you want to improve? (your aim: how good do you want to be? And by when?)

  2. How will I know I’ve improved? (your measure)
  3. What’s the first step towards making this happen? (your intervention)
Once you’ve answered these three questions the second part of the MfI is to move to action – using a simple framework called the Plan. Do, Study, Act (PDSA) cycle. This structure can  help you  test your idea in a very small way to see if it works.  Try it with one person on one day. Tweak it and try it again.  Try it with two people, and so on.  Once you’ve run a few tests you’ll be amazed at what you learn AND most importantly – your good intentions are turning into actions!


So let’s maintain that strong sense of purpose, but don’t stop there.  Think about what your good intention would look like in practice and then measure whether it actually happens.  Being fallible human beings we inevitably realise we’re not quite as good as we’d like to think we are – there’s always room for improvement!
Then move to the final step and think about the thing you can do to make
yourself more reliable – a prompt in the notes, a “What matters to me” process LIKE THESE, or something particular to your care context.
Take good care of yourself!
This isn’t just about you changing the world. There are all sorts of other things that need to change in the wider system around us, but these things are outside the sphere of influence for most of us. In light of this reality we need to maintain good self-care and set our sights on the long view as we work on our small wins each day.  Sometimes we will have set-backs and this type of work can feel difficult and challenging in the prevailing climate and culture. But don’t lose heart! the overall momentum is in the right direction. Maintain your strong sense of purpose, think about how you will measure your progress and then move to action.
It’s also important to find some like-minded folks so you can support and encourage one another. Start small and begin by designing some prompts and processes into your daily routine that will support you to turn the desires of your heart into your daily reality.
Shaun Maher
Strategic Advisor for Person-Centred Care and Improvement
Health Quality and Strategy Directorate | Scottish Government |

Thanks for reading my blog, You can now view my 8 short flims here!
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3 Talks Manchester Metropolitan University Nursing Students April 6th


With great thanks to all at Manchester Metropolitan University for the kind invite back to give 3 Talks to Nursing students on April 6th

I had the great privilege to speak at the Universty at the end of 2015 and have been invited back to speak to all the nursing students who attend over 3 talks 

The talks will be at the following times 

Lecture theatre G29

10am - Mid - Day 

1pm- 3pm 

3:30pm- 5:30pm

With great thanks to Dr Alison Chambers vice Chancelor and dean ,senior Lecturers Anne-Marie Borneuf ,Jaqueline Gladwin ,Linda Garbutt,Janet Edwards,Sandra Coughlan faculty administrator and all at the Universty for this kind opportunity 


Speaking Clinical Skills Celebration NHS Cumbria


With great thanks to Claire Watters Project Co-ordinator Clinical Skills Program Toni Hall,Suzanne Beaty.  @CLIC_Cumbria and all at nhs Cumbria for the kind invite to attend and speak at the Clinical Skills Celebration on April 14th 

I am so very hounred to be invited and look forward to meeting everyone on the day 


Proposals for Scotland’s Dementia Strategy now available

The Scottish Government has published its key priorities for Scotland’s third National Dementia Strategy 2016-19. This has been prepared following extensive discussion and feedback from the series of Dementia Dialogue events held across Scotland between November 2015-January 2016 and written responses.
This paper will form the basis of Scotland’s next three-year National Dementia Strategy which will be published later this year. Some of the key messages from the Scottish Government were to:
  • continue to focus on national and local human-rights based approach to improving dementia diagnosis rates and services
  • continue to national focus on supporting the roll out and embedding of good quality and consistent post-diagnostic support
  • prioritise and design a specific national focus on dementia palliative and end of life care

You can read the full paper online  which also mentions Dementia Carer Voices and how our project helps facilitate direct involvement and experience of people with dementia and their carers in the implementation of policy, and improvements in practice.

Speaking Gateshead Health NHS Foundation Trust 25th April


With great thanks to Christine Fawcett Dementia Specialist Nurse and all at  Q E Gateshead
Queen Elizabeth Hospital for the Kind invite to speak at the Changes for the better in Dementia Conference At Gateshead Health NHS Foundation Trust 25th April 2016

I am very Honored to be invited and look forward to meeting everyone on the day  

Thanks for reading my blog, You can now view my 8 short flims here!
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Speaking ULH NHS Trust Lincoln May 4th


With Great thanks to my my great Friend sam mccarthy-phull @mccarthy_ph Michael DuRose, ULH NHS Trust Lincoln  and Zoe Rowe from LPFT for the Kind invte to return to speak at the  world cafe event at Lincolnshire Racecoure

I Have had the great Honour to speak with / for Sam before on a few occasion  and look forward to seeing everyone again ,taking part and speaking 

Will Also be great to catch up with my good frieanmd Joan @thebestjoan who is also speaking 

you can read the pledges from my last visit HERE 


Speaking West College Paisley. health, social care and nursing students April 28th


With Great thanks to Barbara Mackdonald for the kind invite to speak at West College  Paisley. to
health, social care and nursing students

I have had the great honour to speak at the college a few times over the last few years and look forward to returning

you can read the pledges from last years visit below 

With great thanks to Kate Moran Curriculum  Enhancement Lecturer for the kind invite back to speak to   health, social care and nursing staff and students West College Scotland, Paisley. (Formerly Reid College ) 

I  had the great privilege to  meet and speak earlier today with great thanks to Carol and all the students for the kindness and pledges ,you can read the pledges below 
My pledge is to ensure that I continue to educate the student to recognise the softer side of caring.  To listen and use what they hear to care well – Carol Menzies
I pledge to just give that extra time out my day to stop and give that person my undivided attention and someone to talk to and feel secure and safe and feel loved – Carrie-Ann McKeown
My pledge is to listen more and be a shoulder to lean on – Colette Sherrit
My pledge is to make a difference in a positive way in every life I touch on a daily basis, no matter how small.
I pledge to be the nurse that listens and take time to understand how a person is feeling – Shaun
I pledge to be the best nurse possible.  I aim to listen to everything and anything patient and carers need or want to say.  I aim to be that nurse they remember – Amy McFarlane
I pledge to help people with dementia.  I`m doing it on daily basis, I work in care home – Margarita
I pledge to always take an interest in all the dementia sufferers I work with at the care home that I am employed at – Alana Spence
I pledge to remember that everyone in the care home I work in has a story – everyday.  Also, treasure every moment I get to spend with family members and residents suffering from dementia.  Remember Tommy1s talk every single day – It’s an inspiration – Emma Anne Canning
My pledge is to never forget the people’s lives that I learned about today.  The feelings I felt and the daily struggle people living with dementia and their families have.  I pledge to make a difference to the people’s lives I support – Chanelle Rodger
My pledge is to treat all the children within my work with dignity and respect through all tasks.  To be the person they are able to go to on sad times, when they are scared.  I want to be able to notice when something is wrong.  Report to the supervisor to get help from.  To treat each child as an individual.  Forget the disability, they are a person first – Jennifer Scott
I pledge to go that extra mile to listen and learn from cares.  To make sure they are getting the help they need – Kayleigh McGoldrick
I pledge to give the carers time and listen to how they feel as well as taking time to talk to people that suffer from dementia care –Rebecca Doherty
I pledge to care, listen and respect those in my care.  I will always appreciate those that need help and do everything in my power to make a difference to someone’s life – Louise Coyle
My pledge is to always listen to anyone diagnosed with dementia and do anything I can to help them or their families – Claire Edmondson
I pledge I will always ask “how can I help” and help anyone that needs it to the best of my ability – Rosie Brown
I pledge to be the best nurse and supportive person I can be.  To take the time to listen and help everyone who needs it.  To always ask at least one question about who they are – Yvonne Dunn
My pledge is to care and respect all people.  Not to lose my temper as everyone has their own story before they got the disease.  It’s not their fault. To make people shine – Emily Draper
I pledge to listen not only to the individual but also the family/cares, to show dignity as well as understanding – Leanne
I pledge to always show empathy and leave a caring lasting impression with all patients – Gemma
My pledge is to treat people kindly and always listen to them.  I will try my best to be the best nurse that I can be.  I want to make a difference – Hannah Scobie
My pledge is to treat everyone as an individual and take the time to understand and listen to them.  To spend time and not rush – Natalie Lyall
I pledge to take time to get to know the person I am caring for and to offer help and support to families and cares – Danielle Nicol
My pledge is to be that listening ear through good and bad days and treat everyone as a unique individual with dignity and respect –Cassie McCrone
Posted in Uncategorized


Previous talks 

A big thank you to all the staff and students from Reid Kerr college health ,social care and nursing for the invite and who took time to attend  my talks .I was a guest speaker there last term along with a few weeks ago and then finally today

Thank you once again, for the opportunity, the questions and I wish all who attend this college the best with their futures caring for others



with great thanks to all at reid Kerr College for inviting me back to speak to more Nursing Students om May 7TH I was a guest speaker there last year then again back in March of this year

I look forward to meeting more students and speaking about dementia ,caring for my wee mum ,the letters I recieve and familes I have met on my tour

thank you


a wee look back to my talk in March this year

I was a guest speaker earlier today to students who attend Reid Kerr college in Paisley A big thank you to Kate the lecturer for inviting me along to speak about My mum, dementia ,caring and the life stories I receive .Also a massive thank you to all the students for their time and questions after my talk .For me the opportunities t speak with the next generation of people who will  be on the frontline across the care sector is of great importance and I hope my story helps bring a bit more understanding 
Thank you to all for today

After the talk I was back out doing more location filming for  the new carer engagement film in partnership (voluntary on my part )with Nhsgg&C – CHP a film based on the letters I receive and my own experience caring for mum

Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...