Wednesday, 9 January 2019

Dementia Carer Voices Review of 2018

2018 has been a hugely significant year for the ALLIANCE’s Dementia Carer Voices project, having received its 20,000th pledge to make a difference.
The campaign has now reached out to 160,000 people, across 800 talks. And each of the 21,750 pledges that have been made to date are available to view on the Dementia Carer Voices website.
These pledges encompass practical improvements in the workplace, as well as more personal reflections. And, in the spirit of the ALLIANCE’s theme of Action for 2018, you can read how some of these 21,751 pledges have been turned into meaningful actions on the Case Study section of the Dementia Carer Voices website.
To reach this landmark, the project has visited:
In the process, Dementia Carer Voices has developed many successful partnerships with people and organisations that the project is honoured to have been given the opportunity to work with. The project is represented on a number of national third sector discussion groups and Parliamentary Cross-Party Groups, attending: The Cross-Party Group on Dementia, the Cross-Party Group on Carers, the Cross-Party Group on Life Sciences, the ‘What Matters to You?’ steering group, the Older People’s Development Group, the Focus on Dementia Group and the Dementia in Care Homes Group.
And key messages from both the Chief Nursing Officer for Scotland Professor Fiona McQueen and the Chief Nursing Officer for England Professor Jane Cummings are shared at each of the project’s ‘You Can Make a Difference’ sessions.
Dementia Carer Voices also works with partners across Europe through the European Economic and Social Committee. This allows the project to influence the international policy agenda and ensure that people with dementia continue to have a central role in a post-Brexit world.
The project has featured on a number of podcasts, as well as collaborating with NHS Elect and the Acute Frailty Network on a recent film about dementia and the carer journey.
The project has also sought to promote the work of others who are making a difference for people living with dementia across Scotland, hosting various opinion pieces from people across the health and social care sector throughout the year.
Keep an eye on the Dementia Carer Voices website to be kept up to date on the project’s upcoming events for 2019.

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

Thursday, 3 January 2019

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 listening, kindness and understanding made to his journey as a carer, and the importance of looking beyond a person’s diagnosis to engage with them as an individual.

If you would like to access further information about the Collaborative and to view presentations from the latest learning session, please click here.

The following film has been developed on behalf of the CNO Office, England in collaboration with DCV campaign featuring Tommy Whitelaw.

“The framework supports staff whatever their role, wherever they work to make changes to improve outcomes for patients, improve experiences for both patients and staff and to make better use of available resources. The 6Cs are the value base for the framework and 10 commitments within the framework help align our efforts to areas where unwarranted variation is recognised.”For more information about the Leading Change, Adding Value framework for nursing, midwifery and care staff:

In 2011 Tommy produced a short film in conjunction with Alzheimer Scotland. The video, which was later shown at the Scottish Parliament, includes families and carers reading from the letters they sent him during his dementia awareness tour of Scotland’s towns and cities. To view the FILM

Putting the Care into Dementia Care

This training film is a collaboration between Health watch

staff at Broomfield Hospital and Dementia Carer Voices

Interview for NHS Greater Glasgow and Clyde

 Patients’ Stories Library

The NHS Greater Glasgow & Clyde's Patients' Stories Library for Hospital Staff aims to use patients’ and carers’ experiences to look at how acute services can be improved.
Tommy shared his story with frontline staff working across NHS Greater Glasgow and Clyde, including the Ward staff that cared for his mother at the Southern General hospital. His film interview was also shown across a number of NHSGGC hospital sites during Carers Week 2013 to help raise awareness amongst staff about the importance of supporting carers in contributing to delivering person centred care.

Dementia Carer Voices where proud to tour with Healthwatch across Essex back in October 2015.  You can view the blog post and pledges from the few days here. 
Thanks to every one of you who attended each event and the @HWEssex team for arranging the few days.  Below is a new film about the tour with some of the Nurses who attended sharing their pledges made to the Make a Difference Campaign each day. 


 It’s Ok to Ask for Help!

The It’s Ok to Ask DVD produced by NHS Greater Glasgow & Clyde, Glasgow City Council, The Alliance and Alzheimer Scotland uses carers’ experiences to highlight the benefits of using carer support services in Glasgow, and encourages people to ask for help. Tommy Whitelaw, Alliance Scotland, shares experiences of looking after a partner, parent, relative, friend or neighbour with dementia. Other carers tell us about help they get from support services in Glasgow. FILM

'On the Couch' with Tommy Whitelaw filmed interview NHS Scotland Conference June 2015

Speaking Care Inspectorate Seminar 

Published on 7 Nov 2013
Tommy recently spoke to our inspection team to talk about his experiences of caring for his mum Joan Whitelaw, who died last year after living with dementia for several years. He spoke about the difficulties he had getting the right services for his mum at the right time and how this led him to take his dementia awareness campaign "On Tour"

National Dementia Awareness Week 2014 (England) – NHS Employers Nursing Times - my Filmed interview

To mark National Dementia Awareness Week which runs from 18 to 24 May, NHS Employers the Nursing Times are working with the Alzheimer’s Society to promote resources available to NHS organisations and the NHS workforce.
As part of this activity, they have specially commissioned a short video of an interview with Dementia Carer Voices’ very own Tommy Whitelaw.

You can get more information here on NHS Employers 
This video was made to mark this year’s Dementia Awareness week 

You can click on the image Below to preview the  trailer for a longer film which will be launched on 12th December in NHS Ayrshire and Arran University Hospital Ayr lecture theatre.
make a difference film

Full version of Make a difference with the staff nhsaaa 
Nicola Film Still 2

Produced by NHS Elect, in association with the Acute Frailty Network

This film (This link will take you away from our website) features the ALLIANCE’s Dementia Carer Voices UK Lead, Tommy Whitelaw.  Tommy shares stories about his caring journey for his mum, Joan.  This included the ups and downs they faced on a day to day basis and how some situations could have been made easier for everyone if they had included Tommy, his mums primary carer, in the conversation about his mums health and care support.

Tuesday, 1 January 2019

Dear Jane, Thank you

Back in 2010, I started a campaign from my bedroom when caring for my wonderful mum Joan. Our Letters, Life and Love Stories campaign asked people to write to me to share their personal experiences, so we could celebrate the good stuff and ask questions of the things that were not so good.

This has led to so many people across the world sharing their experiences.
Most letters starting with ‘Dear Tommy.

This morning, travelling on the train I to took time to write my own, a letter of thanks to a wonderful person who has made a difference to my life and so many others:
Professor Jane Cummings, CNO for England.

Dear Jane,

A couple of months back whilst travelling by train, on hearing your announcement to retire, I became a wee bit tearful.
Your generosity of kindness and leadership has had a massive impact on my life, wellbeing and confidence.

Someone once asked me what I learned from caring for my mum Joan , living with dementia. The biggest lesson was that people are kind, that people are remarkable and that people care. All you have to do is take time to listen.

I think my mum was describing you Jane when teaching me this lesson.
You are most certainly kind, remarkable and caring.

My life is so much better for knowing you and so many people who will never have met you, have and will receive better care because of your leadership, passion and kindness.

This son is so very proud to know you, is grateful for your leadership, kindness, inspiration and care.

I have been ever so honoured to share Leading Change ,Adding Value and a key message from you at all my talks and I know, the message from you Jane has  meant so much to so many .thank you for the  opportunity  to share your words

Wishing the very best on your soon to be retirement.

Thank you Jane ,for  leading change and adding value for so many.

Thank you from a son.


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

Dementia Carer Voices 5 Steps to Change Flyer looking at Leading Change, Transforming Care.

Dementia Carer Voices 5 Steps to Change Flyer looking at leading change, transforming care.

Dementia Carer Voices would like to say a huge thank you to everyone who has made a pledge as part of the You Can Make a Difference’ campaign and we are absolutely delighted to have received nearly 20,000 pledges! 
This is a wonderful milestone to reach and would not be possible without the commitment and passion of everyone who attends our talks, reads about our campaign and pledges to make a difference to the lives of people with living with dementia and their carers.
The team have been taking the ‘You Can Make a Difference’ campaign to 650 talks to date, reaching over 100,000 staff and students throughout the UK 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.
You can read all the over 16,000 pledges on our pledge page and see our ‘You Can Make a Difference’ case studies.
In June 2017, Dementia Carer Voices launched its publication analysing 6,000 of the pledges we have received in the three years running the project. The key messages were around the importance of time in delivering compassionate care for health and social care staff and students.
Irene Oldfather – Director says:
” Dementia Carer Voices new leaflet describes how we can move forward to ensure that we put people at the centre by asking what matters to them, that we listen with heart to ensure that we action what they tell us and what we put rights at the centre of everything we do.
Using our 5 steps to change model we look forward to working with carers, health and social care professionals and those living with dementia to transform care.
Looking to 2018, we look forward to taking our message to communities, care homes, universities and hospital across Scotland to ensure a rights based approach to care with compassion”
Tommy Whitelaw – UK Lead says:
” We are so very lucky to be meeting health and social care professionals and students all across the country on our Make a Difference Tour and Campaign.
We hope our new 5 Steps to Change Flyer and initiative will support turning good intentions (pledges) into purposeful actions”
If you have been inspired to make a pledge, please get in touch and email us your pledge at
If you have made a pledge and want to share how you have made a difference, see our inspirational ‘What Matters to You? case studies.


Download our brand new 5 Steps to Change Flyer to help support turning pledges into actions.

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

Dementia Carer Voices Review of 2018

2018 has been a hugely significant year for the ALLIANCE’s Dementia Carer Voices project, having received its 20,000 th pledge to ma...