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!
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Thursday, 3 January 2019

Living Well with Dementia: Are we Trivialising Reality?

I’ve always been concerned with the narrative of living well with dementia that comes from organisations and from so many who are not actually living with dementia, but commenting from afar.
I suppose my personal views over the last few years have been quite unpopular.
My Mum lived with dementia as well as she could. And I cared for my Mum as well as I could.
When I first started campaigning whilst caring for my mum, so many people shared their honest and open experiences with me celebrating both the beauty of care and caring, and the struggles in equal measure. Many shared their experiences on my original blog and now via our Dementia Carer Voices project.
Many people still share, but privately now rather than as a public viewpoint. And the reason is often very similar:
‘I don’t want to share my story publicly as I might look like I am failing personally or failing the person I am caring for.
‘All I hear is the narrative from so many that I should be living well, that nothing should change, so to share my experience is a story of failure.’
I also believe that, until we readjust the narrative again to support people to share their stories, inadequate support and understanding will be in place to help people live as well as they can at home, in care homes and in our communities.
So much pressure was put on people a few years back to say that they were not sufferers but living well, that a reality has almost been ignored.
My Mum, like many, would not like to be described as a sufferer. Although Mum often suffered, as I did often to witness, I can’t say that we lived well. I can’t say I read about living well in the letters I have received (this link will take you away from our website) or  the stories I have heard from the 160,000 people I have met in person on tour.
We lived as well as we could living with dementia and caring for each other.
It is time for a rethink on the living well with dementia narrative and marketing, to living as best as we can.
If we truly listen and support people to feel empowered and to share what matters to them, then all of us can live as best we can.
Time to change the narrative?
This son most certainly thinks so.

Thanks for reading my blog, You can now view my 8 short flims here!
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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!
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General Practice Nurses.Making a Difference

Tommy Whitelaw joined NHS Education for Scotland and Scottish Government Primary Care colleagues on a tour visiting General Practice Nurses.

With great thanks to Jennifer Wilson (Professional Nurse Advisor at the Scottish Government), Lynne Innes (NES National Coordinator for General Practice Nursing) and colleagues at NHS Education for Scotland and the Scottish Government Primary Care Team for inviting Tommy to take part in the General Practice Nursing Roadshows over the last three months.
As a part of the Scottish Government’s investment in education, NHS Education for Scotland organised a tour across every board area in Scotland listening to and engaging with General Practice Nurses. This has become more of a focus for the Scottish Government which has published a report this week (this link will take you away from our website), which aims to to make General Practice Nursing a more sustainable and attractive career choice.
As a part of this tour, our UK Project Lead Tommy Whitelaw was invited to speak to General Practice Nurses about kindness and leadership.
We had the most wonderful experience working with all the team and meeting so many remarkable members of the nursing family across Scotland. We were inspired by all we met on the tour.
Great thanks also to colleagues of both Jennifer and Lynne who attended many of the sessions to support and share the local landscape. We would like to thank Jane Harris (Programme Director, NMAHP, NHS Education for Scotland), Vicki Waqa (Specialist Educator, Medical, NHS Education for Scotland), Cheryl Harvey (Principal Educator, NMAHP, NHS Education for Scotland) and Ann Rae (Principal Educator, NMAHP, NHS Education for Scotland) to name a few.
We are grateful for the opportunity to take part and were inspired by all we toured with and met along the way. We look forward to following the story of the pledge trees launched at each location and will report on the outcomes from the tour next year.
Thank you for the opportunity to tour with our remarkable nursing family.

Thanks for reading my blog, You can now view my 8 short flims here!
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Make a Difference Case Studies Updated 2018

 You Can Make
a Difference

Dementia Carer Voices began its flagship ‘You Can Make a Difference’ campaign in February 2014, since then it has gone from strength to strength. The campaign calls upon health and social care professionals to reflect on the lived experience of people affected by dementia, and identify key messages or actions from their stories that they can take away and apply to their everyday practice to improve outcomes for people living with dementia and their carers.
The campaign has had an extensive outreach programme, engaging with an estimated 150,000 people over the course of 800  talks receiving more than 19,000 Pledges   As the campaign continues this year, this total is set to increase throughout 2018.

This campaign, primarily targeted at health and social care professionals and students, has travelled across the country with the simple message that we can all make a difference, no matter what our role. The highly translatable nature of the campaign has encouraged people from all backgrounds to participate, and has meant that along with professionals and students, MSPs and members of the public have readily pledged their support not just to the project but to the estimated 788,000 unpaid carers in Scotland.
The campaign seeks to empower individuals to make a positive difference in the lives of people living with dementia, their families and carers. It aims to encourage people to do what they can to make their journeys easier, often in simple ways. Perhaps the most common pledge is
“I pledge to see the person and not the dementia.”
This is an invaluable shift towards a more person-centred culture, which puts the focus back on the person at all times, recognising them as experts in their own lives and shifting the balance of power towards individuals.
To date, the campaign has gathered over 19,000 to make a difference. The pledges are inspired by the Make a Difference campaign, and are collected in a variety of means. This includes in person at awareness talks, at events such as conferences, via email and online through the blog, Facebook and Twitter account. Throughout the journey of the campaign, the project team have been keen to learn about what works, and what changes if any are needed for the pledges to be fulfilled. As a result, the team have recommended that the hosting organisation for a talk should keep the pledges and work alongside their colleagues to make a difference. This has been done in a variety of ways by different partners, some of which are outlined below.

You Can Make a Difference – Case Studies

Royal Bournemouth Hospital
UK Lead, Tommy Whitelaw was invited by BJ Waltho to speak at Royal Bournemouth Hospital in March 2017. BJ had heard Tommy speak at the RCN Congress in Glasgow in 2016 and made a pledge to have Tommy speak to staff at the Royal Bournemouth Hospital.
Following Tommy’s talk staff made engaged in values based reflective practice, reviewed their practices and discussed how they can include the people for whom they care and their families in their care. Tommy’s presentation focused on the ‘What Matters to you?’ principles and as a result staff went out to find out what mattered to their staff, people receiving care and their carers. They created a film about this and collected their findings in the below slides.

You can also read the moving and inspirational story of Colin who was able to marry in the last days of his life as a result of those caring for him switching the conversation from “what’s the matter with you?” to “what matters to you?”

Colchester Hospital 
Tommy has been invited to give several talks at Colchester Hospital – three talks in February and two talks in July 2017. In the initial talks in February, Tommy received pledges from the nurses at the Hospital and was invited back in July for the unveiling of the “Dementia Care Pledge Tree” which was painted by A-Level student, Lara Wallington at Colchester Sixth Form College.


The beautiful tree stands 8 feet tall in the foyer of Surgical Assessment Unit (SAU) in the Main Building of Colchester General Hospital.  It is being filled with the personal pledges of staff at the hospital have made. The first talk was with the hospital dementia champions and then to doctors with staff from many areas and roles then they were invited to add paper leaves on where they wrote a pledge about what they will do to make a difference to the lives of people with dementia and their carers. Having the pledges visible in the foyer allows the staff to return to the pledge tree and reflect on the pledges they have made. Colchester Daily Gazette also covered the story and you can read about it here.

NHS Ayrshire and Arran
NHS Ayrshire and Arran have shown their commitment to the ‘You Can Make a Difference’ campaign in a variety of ways. The work began when UK Lead, Tommy Whitelaw was invited by the Chief Executive to give a ‘Make a Difference’ talk in a formal Board meeting.  The Board were then invited to start off the process of making a pledge of one thing they would personally do as a Board member to make a difference.
The talks were then given to staff throughout the health board in Kilmarnock and Ayr. Several hundred pledges were gathered as a result, which have been mapped against the 10 key action points for hospitals to give meaning and context to each. They have also been used to create pledge trees which are being displayed throughout the hospital in staff canteens which are also open to the public
Furthermore, NHS Ayrshire and Arran has 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.
NHS Ayrshire and Arran are currently working with staff to find out staff’s progress with their pledges, the difference they have made and offering support for staff to fulfil their pledges.

Combined NHS
At the Combined NHS Conference this year the pledge work was part of the morning session.  Then in the afternoon they were invited to a cafĂ© style conversation about launching pledge tress and putting pledges into practice.  Initially 25 teams across the trust have taken up the initiative.

Morecombe Bay
The team at University Hospitals of Morecambe Bay NHS Foundation Trust really engaged with the Make a Difference message, and asked staff to reflect on their practice the week before attending a talk. A total of 32 pledges trees had been traveling around the trust in the lead up to the talk, generating 640 organisational and personal pledges.  The trees will now be displayed around the trust as a form of values based reflective practice in the hopes of inspiring others.
UHMB also held a follow up event for teams to review and celebrate their dementia pledges. By grouping the 640 pledges into 5 core areas, staff were able to evaluate their work in relation to ‘Environment’, ‘Experience’, ‘Food and Nutrition’, ‘Training’ and ‘Other’. Dementia champions reviewed the pledges in April 2016 and have confirmed a number of pledges have been delivered and are embedded within the trust. The quality committee has now published their six month dementia paper which shows how UHMB have committed to our You Can Make a Difference campaign and embedded its principles within their work in order to promote transformational change.


University of West Scotland
The campaign has been invited to reach different cohorts of students in Ayr, Dumfries, Hamilton, Paisley on a yearly basis, helping to ensure that the next generation of health and social care professionals know the value of lived experience and have a greater understanding of the carer journey, helping to promote person centred care through values based reflection.


West Lothian College
West Lothian College have launched a permanent pledge wall and tree for students to contribute to, making the ‘You Can Make a Difference’ campaign a part of the curriculum. This will allow students and staff to support each other to have values based reflective practice, and continue to base their teaching and learning experience around their pledges.

Care Homes

Hatton Lea Care Home  
Hatton Lea is one of the chosen site for Specialist Dementia Units in Scotland.  The staff launched a pledge tree and have monthly meetings around them to start the conversations.

Raith Gates Home
Teresa Easdale, Senior Social Care Worker Fife Council organised an awareness event for staff from 10 care homes from across the Fife area.  The event was fantastic, and we received amazing comments and pledges from people who attended. The response from Elaine Siggers, Unit Manager at Raith Gates Home was fantastic – Elaine put together a pledge tree where we received some beautiful comments and pledges.

Some of the comments from staff:

“I found the talk very moving, and it made me re think about my work practice”
“I felt very emotional whilst writing my pledge about what I could do to make a difference for someone living with Dementia”
“Thought provoking”
“The most inspirational talk I have heard”

Care at Home Teams

UK Lead Tommy Whitelaw visited Livingston home care team staff on the April 14 2016, after being invited back to speak to a new cohort of staff.
The You Can Make a Difference campaign was used as part of the training package delivered to new home care staff. Inspired by carers’ experiences, Livingston Care Home staff created their own permanent pledge tree to remind staff of their commitment and encourage values based reflection. Children from the local school were invited to take part in creating the tree by designing and painting the flowers, demonstrating how our campaign reaches the entire community embedding the message that everyone can make a difference to the lives of someone with dementia, their family, and carers. We look forward to watching their pledge tree grow, and for their sister sites to create their own trees in Stirling.


Glasgow Housing Association

As part of What matters to you day we worked in partnership with the What matters to you team and Glasgow Housing Association.  A tree was launched in the main entrance to the housing office, encouraging residents and staff to share What matters to them and how they will make a difference.


Pollok Community Pledge 
In partnership with Glasgow Clyde College and Humza Yousaf MSP, Minister for Transport and Islands, Dementia Carer Voices launched a community pledge in Pollok, giving constituents the chance to reach out to their neighbours and help reduce isolation and loneliness. 
UK Lead Tommy Whitelaw is a life-long constituent of Pollok, where he was born and later returned to care for his late mum Joan. From the success of our You Can Make a Difference campaign, the team wanted to extend the invitation to the community to make a pledge to the whole community of Pollok, not just to people living with dementia and their carers, but to their neighbours and wider community.
Chaired by Director Irene Oldfather, the event celebrated pledges made by students at theGlasgow Clyde College, introduced participants to their local link worker, and the community assets currently mapped on ALISS. 
The team were also asked to talk about the community pledge on the John Beattie show on Radio Scotland.

Social Work

Northern Trust (NHSCT) Northern Ireland, for Social Workers

A ‘Roots to Effective Practice’ Workshop was held on September 9 2016 in the Northern Trust (NHSCT) Northern Ireland, for Social Workers who recently completed their Assessed Year in Practice. Social Workers examined the Reflective Practice Model to inform evidence and value based practice, listened to the messages from Tommy Whitelaw and pledged what they will do differently in their practice to promote positive outcomes for service users/carers.
Pictured are Workshop Organisers Caroline McGonigle, Social Care Governance Manager, NHSCT; Sonya McGuckin Learning and Development Officer, Social Services Training Department, NHSCT with Tommy Whitelaw BCAh , UK Lead, Dementia Carer Voices


Anam Cara, North Ayrshire
The Make a Difference campaign has been taken forward by many individuals who have shared the campaign and actively encouraged others to do so. Claire Mills, who is the manager of Anam Cara Dementia Respite Services organised an incredible day to inspire people to make a pledge to make a difference.
They hosted an afternoon tea session where Tommy gave an awareness talk, followed by a question and answer session where people had a chance to ask questions but in a more relaxed and informal setting. To make room for their adapted housing, the centre had to have cherry trees cut down, and have hired a woodcarver to make a huge jigsaw spelling out Anam Cara with each letter made up of engraved pledges using the wood from these trees, celebrating their commitment to making a difference and encouraging people to participate.
In February 2016 UK Lead, Tommy, was invited back to unveil the permanent pledge tree wall at the respite service. It is great to see the impact of our ‘You Can Make a Difference’ campaign and that services such as Anam Cara have adopted the principles that everyone can make a difference to a person with dementia, their family, and carers.

Emergency Services

Scottish Ambulance Service
The Scottish Ambulance Service have been fantastic ambassadors, taking forward the message of listening to and learning from the voice of lived experience and committing to making a positive difference.

Pauline Howie CEO and Victoria Burnhan, Head of Practice Education & Development at the Scottish Ambulance Service invited the team to give a live Make a Difference webcast to staff across Scotland. This kick-started the new partnership, with Tommy giving awareness talks to staff on a joint tour the following week. This was further complemented by the creation of a new pledge tree to be located at the Scottish Ambulance Service Glasgow Caledonian University, where people will add their pledges and see them every day they go to class, reminding them of their commitment and the inspiration behind them.


Ffion’s Pledge Trees
After attending one of our You Can Make a Difference talks Jules Lewis, End of Life Care Facilitator in Shropshire, took the key message home to her family which inspired her 9 year old daughter Ffion to make pledge trees for staff at Shropshire hospital.
Ffion was then invited to share with her class the key messages behind the pledge tree and was later asked to give a talk at her school assembly.
This story is particularly powerful as it demonstrates the impact that sharing the voice of lived experience can have.
Ffion’s hard work emphasises the translatable nature of the project, engaging with health and social care professionals to young people, meaning our campaign promotes a culture change not only in healthcare but society at large.
With help from her mum, Ffion put together a guest blog piece:
‘On March 7 2016 I talked to the children and teachers at my school in our school assembly, I told them about your work, your lovey mum and your #Tommyontour. I also showed them one for my personalised dementia pledge trees. I have been making these pledge trees for my mummy’s work friends I make a different one for each person, I put their name on it and l do my signature, the person then writes their own pledge on the tree. I hope my trees make a difference to people who live with dementia.’

There are so many ways to make a positive difference in the lives of others, but we hope that these have inspired you by showing some of the ways people have taken the campaign forward in order to improve the lives of people living with dementia, their families and carers.

The message of the campaign is simple and can be embedded anywhere, from cities to rural areas; from boardroom to bedside. We can make a difference.
For further information on the project, please contact:
Policy & Information Intern

Telephone – 0141 404 0233
For regular updates, please visit the Dementia Carer Voices Blog Site at

About Dementia Carer Voices
Dementia Carer Voices seeks to:
  • Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;
  • Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
  • Raise awareness of the issues around caring for someone with dementia including among health and social care students;
  • Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;
  • Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent lives;
  • Work with other Carer Organisations and key stakeholders within and beyond the ALLIANCE’s network to ensure that relevant strategies are well informed by the views of service users.
  • Harness the work undertaken to date by the Tommy on Tour campaign, and support Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.

About the ALLIANCE
The ALLIANCE has three core aims; we seek to:

  • Ensure people are at the centre, that their voices, expertise and rights drive policy and sit at the heart of design, delivery and improvement of support and services.
  • Support transformational change, towards approaches that work with individual and community assets, helping people to stay well, supporting human rights, self management, co-production and independent living.
  • Champion and support the third sector as a vital strategic and delivery partner and foster better cross-sector understanding and partnership.

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