Thursday, 25 May 2017

Dementia Carer voices May-June Newsletter is now Available to read

Dementia Awareness Week 2017 is coming up #DAW2017

Dementia Awareness Week 2017 is next week, from 28th May to 4th June. To mark the occasion and to raise awareness of dementia, DCV will be holding a series of events and activities.

We will aim to publish one post each day on our blog to mark Dementia Awareness Week and keep you up to date on our work. Please follow these posts on our blog. #DAW2017


DCV tours the Western Isles for Dementia Awareness Week 2017

Dementia Carer Voices’ Project Engagement Lead, Tommy Whitelaw, will be holding a series of talks in conjunction with NHS Western Isles from 1st June to 3rd June. The talks will coincide with Dementia Awareness Week 2017 and are aimed at raising awareness for people with dementia and their carers.


We will be running daily posts about Tommy’s tour. You can keep updated on the tour and see all the details of Tommy’s talks and events on our blog.


Project Engagement Lead, Tommy Whitelaw, meets the First Minister

Dementia Carer Voices Project Engagement Lead, Tommy Whitelaw, met with the First Minister, Nicola Sturgeon, in the Scottish Parliament on the 26th April. It was a great honour and an opportunity to discuss the DCV project and share the story of the people we’ve met and pledges we’ve received.


DCV attend Focus on Dementia Conference

On the 10th May, ALLIANCE Director, Irene Oldfather, Project Engagement Lead, Tommy Whitelaw and Policy and Information Intern William Griffiths attended Focus on Dementia’s conference at the Crowne Plaza Hotel in Glasgow.

Tommy and William manned our stand and engaged with lots of people about the work of Dementia Carer Voices and the ALLIANCE. We were visited there by, among many others, Tom McCarthy from Health Improvement Scotland and the team from Hatton Lea Care Home that Tommy visited last month.

We brought the DCV pledge tree on which people wrote reflections about what caring a person with dementia means to them. Please see the blog for some of the inspiring pledges we received on the day.

Irene spoke at the ‘on the couch’ session about the importance of person centred care, and shared some reflections on what barriers carers face in providing high quality care.

It was a good day, and great to meet many unpaid carers, people with dementia and policy professionals on the day.

Take some time to read the inspiring pledges here.


ALLIANCE Director, Irene Oldfather, to speak at BSG Scotland Conference


British Society of Gerontology Scotland Networking Seminar are organising a conference at Glasgow Caledonian University 12.00 – 16.30 Wednesday 14th June, 2017.

The conference will discuss: Are we ready to integrate health and social care?

Alliance Director, Irene Oldfather, who has been asked to present at the conference, will address her talk at ensuring person centred approaches in the integrated health and social care environment


Glasgow Housing Association and #WMTY17

This month one of our guest blogs came from Gregory Hill-O`Connor, Our Voice Co-ordinator at the Alliance. Greg tells us about his visit to Glasgow Housing Association and What Matters to You Day.


“It Isn’t Joy in Work; Joy IS the Work” – Guest Blog

Our other guest blog this month came from Hans Hartung from NHSAA. He talks about the power and importance of connectedness in experiencing joy in your work. Linking nicely with #WMTY17


@CombinedNHS Launch What Matters To You Pledge Trees

A big thank you to Maria Nelligan @Nell1Maria – Director of Nursing and Quality, Julie Anne Murray @JulieAnneM2016, Colin Burgess @StaffsOatcakes and all at @CombinedNHS  Trust for inviting Tommy to speak at their Annual Conference and help launch initially 25 what matters to you pledge trees across all areas of the trust and community.

Maria and Julie Anne helped support 4 talks at Keele University with Tommy and Colin and invited Tommy to speak at the trust conference.

The day was truly inspiring. We are looking forward to watching the trees grow and to returning later this year to meet the teams again, to capture the story of pledges, what matters to staff and what matters to people across the trust areas.

After the morning sessions, the conference broke out to a safari quick fire 15 minutes sessions, sharing ideas then moving on to the next table.

North West Non-Medical Prescribers Pledge to Make a Difference

Thanks to David Reddy, Admin and Clerical Support Officer the Association of Non-Medical Prescribers for kindly inviting Tommy to speak at their Annual Conference at the AJ Bell Stadium in Salford on April 25th 2017.


Also, a big thanks to Dr Debbie Robertson, of Chester University, to suggest Tommy as one of the speakers.



Over 200 delegates from across the North West attended and made personal pledges that you can read below.


Future DCV events

Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” page over on our blog.


ALLIANCE Conference - Change: The Health and Social Care Integration event


Join the ALLIANCE, our members and partners at our 2017 annual conference on the 30th May. It will be focused on integration and change. What kind of change is needed? Where are the examples of change happening for the good? Is it happening fast enough in health and social care? What are the factors that drive the kind of change that makes a positive difference to people’s lives? How can we influence change?

The event will focus on putting people firmly at the centre of decision making and will cover broad areas that affect people’s lives. The programme and venue will be designed around different zones reflecting many of the key issues that most affect the lives of people who live with long term conditions, disabled people and unpaid carers.

Have a look at our conference agenda. Download your booking form here or call 0141 404 0231 to get support to fill in your form.


Meet the team at upcoming conferences and events

June will be a busy month for the DCV team. We are attending several events and conferences. In addition to Tommy’s tour of the Western Isles and Irene’s speech at Caledonian University, we will be attending:

We will also be showing a poster displaying our work at the Alzheimer’s Scotland and NHS Scotland Conferences.


Connect with Dementia Carer Voices

There are many ways to connect with Dementia Carer Voices. Last month we launched our Facebook page, we can be reached on Twitter or through email at Do get in touch with any questions about our upcoming talks or events, if you want to share a blog with us or just to say hi. 


What matters to you day - 6 June 2017

What Matter To You day is on the 6th June this year. Find out more information over on the #wmty17 website and see how you can get involved, how to order free resources and what activities will be taking place.

The ‘What matters to you?’ team have been redeveloping the resources, and are pleased to let you know that these are now available.

Connect through:

·         Facebook page – 

·         Twitter - @WMTYScot > and #wmty17

·         Email -

Dementia Carer Voices also has What Matters to You Case Studies live on our blog. 


Creative Competition 2017

DCV’s colleagues at The Health and Social Care Academy are running their third annual Creative Competition. This year’s theme is on change and they are partnering with Scottish Recovery NetworkWrite to RecoveryReachout with Arts in Mind and Mind Waves.

They are seeking entrants on the following:

  • What you need think needs to change in Scotland to keep us living well?
  • What you do to stay healthy and well?
  • What one thing you would change where you live to keep you well?

There are five categories; poetry, short story, film, photography and arts and crafts and the competition will run till Wednesday 19th July.

This year’s partnership with Write to Recovery means that entrants to the poetry and short story category can upload their submission direct to the Write to Recovery site.

Sunday, 21 May 2017

Great honour to be speaking sharing the caring event June 13th


With great thanks to Dr Helen Brown CEO Carers Trust Cambridgeshire for the kind invite to attend and speak 

Thank you for the kindness and opportunity 


Join us to celebrate carers at Sharing the Caring 2017

We promise you a bellyful of laughs and many heart-warming true stories about the lives of our fabulous carers at this year’s Sharing the Caring celebratory event where winners will be announced for Cambridgeshire and Peterborough’s Pride in Our Carers Awards.

Date: Tuesday 13 June

Time: from 9.45am – 4pm. Feel free to join us for as much of the event as you’d like

Venue: C3 Centre, Coldhams Lane, Cambridge, CB1 3HW

Cost: Free, but booking required

  • Sharing the Caring will focus on the carers’ voice, carers’ rights and what to do in an emergency.
  • Dementia Campaigner, Tommy Whitelaw, who travelled the world for the Spice Girls, Kylie and U2, will talk about becoming a full-time carer for his mum, Joan, for six years.
  • Marketplace stalls will provide a range of valuable information and activities, some interactive, for family carers, including Tai Chi and Mindfulness workshops, and the chance to join the Labrynth Singing for Health group.
  • Lunch
  • The afternoon rounds off with the eagerly anticipated announcement of the winners for the Pride in Our Carers Awards, honouring those who go the extra mile caring for family and friends, as well as carer friendly employers, voluntary organisations and social care professionals.
  •  Afternoon refreshments provided by local WI.

To book your place at the event go to  If you would like to attend any interactive workshops you must book these in advance.

Free transport is available from Peterborough.  To book transport from Peterborough, please call our Carer Helpline on 01480 499090 saying you would like to attend the event.

If you would like to find out more about either of the events please call 01480 499090 or email

Hope you can join us.

Please help spread the word by downloading the poster and displaying it in your local GP surgery, workplace, community centre, school, etc..
This is a joint event with Cambridgeshire & Peterborough NHS Foundation Trust.

Tuesday, 16 May 2017

Members of the public needed end of life and palliative care research public involvement group


High quality palliative and end of life care is recognised as a human right for citizens across the globe.  In the School of Nursing and Health Care at the University of Glasgow our vision is to create world-leading research to improve the quality of life for people living with life-limiting illness and their family members/carers. We follow values laid down by the World Health Organisation for palliative care, to prevent and relieve suffering using a holistic approach that addresses physical, psychosocial and spiritual needs.


Professor Bridget Johnston is an expert in this area, having a clinical, educational and research background in palliative and end of life care. She is a member of the University of Glasgow’s End of Life Studies Group and leads a Glasgow based palliative care grant-writing group that draws on practice-based knowledge and local voices to produce original research that can be translated into everyday life caring contexts. 


Dr. Gillian Mathews works alongside Professor Johnston and the main focus of work centres on research to improve the quality of care provision and delivery at end of life. Our aims include finding ways to meaningfully involve lay members of the public in our research. In this regard, we are keen to set up a group of local participants who are interested and willing to take part in discussions about palliative and end of life care and to hear their ideas about current and future research projects.   


Gaining the views of people living with a life-limiting illness and/or carers with experience of caring for someone moving towards end of life can help to ensure that our research is relevant and deals with current concerns and issues. This aspect is very important as it keeps the research grounded in the reality of people’s everyday experience which, in turn, improves its potential for translation into practice.


Once we have a few interested members of the public, the plan is to meet and agree how we will run the group. We have a budget for travel expenses and can either meet on the University campus (accessible premises) or at a convenient location decided by the group members. The Prince and Princess of Wales Hospice is another option. We are also open to telephone and skype contact if preferred.


If you would like to be involved in this group or to find out more please contact:


Dr. Gillian Mathews

0141 330 2628


School of Medicine, Dentistry and Nursing

University of Glasgow

1st for Nursing in the UK: Complete University Guide 2016/17


Tuesday, 9 May 2017

Guest post via Hans Hartung “It Isn’t Joy in Work; Joy IS the Work”

                           Guest post via Hans Hartung

                          “It Isn’t Joy in Work; Joy IS the Work”

Kate Hilton of the IHI Open School, Helen Bevan of the NHS England, Hans Hartung of the NHS Scotland, and Marianne McPherson of the IHI 100 Million Healthier Lives team describe how leaders can embrace their role as facilitators of joy in work.

Improvement guru W. Edwards Deming had a clear vision of a leader’s role: “Management’s overall aim should be to create a system in which everybody may take joy in his [or her] work.” Studies have shown that joy in work leads to higher service user satisfaction, better staff engagement, more cooperation among staff, higher productivity, and more efficiency.

But what exactly is “joy in work,” and how can we, as leaders, elicit it? We tackled that question during a unique session at the 2016 IHI Nationanl Forum.
As we prepared for the session, we wanted to develop a shared understanding of joy from our work as leaders of large-scale change efforts. We believe joy is a lived experience, not a theoretical one. While we may possess strategies and methods for creating joy, they must pass the “sniff” test: we know when we feel “joy” — and when it is inauthentic or forced. We experience joy as a feeling of pleasure, happiness, and wellbeing that results in energy, connection, a sense of purpose, meaning, and fulfilment. In other words, we all have an internal “joy calibration system.”

We took that knowledge and challenged ourselves to teach about joy with joy at the Forum, where we gathered with 20 frontline leaders of change in health care. As pre-work, we asked participants to submit “personal anthems of joy,” which played throughout the session. As participants entered the room, we welcomed, acknowledged, and thanked each one of them for their presence. We asked them questions about themselves, helped them find their seats, and introduced them to one another. We shared pictures and stories of who we are and what brings us joy. We ignited the senses in small groups around smell, touch, taste, sound, and breath. And during our break, we conducted a “Randomized Coffee Trial” to deepen authentic connections.

Our workshop’s aim was to create a Joy Manifesto that explored how we experience joy from within, together, and across a system. The following seven design principles for joy emerged from the group’s work. Central to these principles is the understanding that while joy is a lived experience at personal and interpersonal levels, creating the sustained conditions for joy is a system responsibility. These system conditions, then, lead to personal and interpersonal joy at work:

  1. Create conditions for people to identify sources of joy from within. We cannot give what we do not have. Because joy lives within, we must identify the personal practices and habits that connect us to our internal sources of joy, like journaling, being in nature, exercising, meditation, and singing. Test to Try: Notice for yourself: what makes you joyful
  2. Encourage people to bring their whole selves to work. This is about moving from knowing what brings you joy to living it at work. How might you bring other joyful parts of your life into the workplace? Participants offered examples like writing thank-you notes to others at work, building a quiet walk into each work day, and sharing a joke, personal stories, or pictures. Test to Try: By next Tuesday, what one joyful life practice can you integrate into your work day?
  3. Create conditions for human connection. To live is to be connected to — and helpful to — each other. Human connection is an organic process that emerges whenever people meet. Workshop participants noted that connections amplify collective learning by building on one another’s strengths and recognizing weaknesses. The quality of our connections is a predictor of our happiness. Sharing stories and facilitating a social environment help to build authentic connections. Attentive listening without interruption, humble inquiry, and genuine curiosity are human ways to build empathic bridges. Test to Try: In the next week, listen to someone without interruption and with curious interest in what they want to share. How is it different?
  4. Make it safe to be joyful. Deming also said, “Drive out fear, create trust.” Trust and absence of fear are the foundation to go beyond “safe space” to “brave space” where people can try new things and be vulnerable, honest, and light-hearted together. Joy lives at the edge of taking risks and knowing that it is okay to fail forward. Ask “open and honest” questions, demonstrate acts of kindness, greet everyone within a 10-foot radius, adopt an “eyes up, hearts open” hallway culture with no smart phone use, and celebrate courage. Be nice, consistently. A culture that values recognition and respect encourages trust. Leaders have a particular responsibility to create these conditions by modelling these behaviors. Test to Try: Put away your smart phone for one day and acknowledge those around you. See what happens.
  5. Create a space for others to lead. Be authentic. Don't give power and take it away; instead, help others see and use their agency. Ignite people’s autonomy by asking them to break the rules when the rules stop serving the intended purpose. Empower people to refine and redefine measures that don’t make sense. Replace micro-management with mutuality by spending time at the front lines to speak with and listen to people. Test to Try: This week, make rounds on the floor or in the field with the intent of unleashing others’ capacity and will to solve their own problems.
  6. Build systems for joy: When we think about joy, we typically think about intrinsic motivation: connecting with people’s internal motivation, linking with their values and the things that matter to them at the deepest emotional or spiritual levels. But we can also create systems of extrinsic motivation to support joy. By this, we mean introducing levers or system drivers that encourage specific behaviors or “prod” people to engage in particular activities. Examples include:
    • Defining joy as a stated value of the organization, developing metrics around joy, making joy a deliverable to which all staff dedicate a percentage of time each month, and including joyfulness as a qualification in job descriptions
    • Creating conditions for joy to emerge, as Swedish leaders do with “FIKA,” a break with coffee and cake
    • Backing off if incentives are experienced as "compliance for joy,” making them inherently un-joyful
Test to Try: By the end of the month, explore one concrete step for your organization to take to design for joy.
  1. Create conditions for people to learn, improve, and innovate. Having fun designing joy in work, actually enjoying the process, was one of the most exciting insights from the workshop. Improvement and innovation stimulate creativity and intrinsic motivation, resulting in joy. As Deming noted, “Innovation comes from people who take joy in their work.” Co-ownership, playful improvisation, experimentation, valuing failure, the appreciating of stories behind the data, and a focus on collaboration make change come alive. Joy in improvement work results from the knowledge that any improvement contributes to the bigger picture and is connected to others’ learning. Joy builds confidence, and confidence builds intrinsic motivation for continuous learning. As Deming stated, “We are here to learn, to make a difference, and to have fun.” Test to Try: Have fun! (Really!)
All in all: It isn’t “joy in work”; joy is the work. Being an improvement leader who creates the conditions for joy means knowing it, being it, sharing it, and designing for it. For Deming, there was no doubt that the experience of joy in work was a prerequisite for any high-performing organization. Joy must be how we do business — within ourselves, together with others, and across our systems.
Sources and additional reading:

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

Wednesday, 3 May 2017

Would you like to share your views on issues such as living with dementia dementia, , unpaid caring

Would you like to share your views on issues such as dementia, mental health, unpaid caring ?

You can by writing a viewpoint for our Dementia Carer Voices blog.

Here are some pointers for pulling together a viewpoint blog.
You can also view other viewpoints below:
Get in touch with the team at:
Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Dementia Carer Voices March/April 2017 Newsletter is now available to read or download

Dementia Carer Voices March/April 2017 Newsletter

Dementia Carer Voices launches Facebook Page
Dementia Carer Voices has launched its new Facebook page to engage more widely with people with dementia, their families and carers.
Please give us a like at:
Thank you to the 13,000 people!
The Dementia Carer Voices team would like to say a massive thank you to everyone who has made a pledge as part of the ‘You Can Make a Difference’ campaign. We are absolutely delighted to have received 13,000 pledges! This is an incredible milestone, and is only possible due to the commitment and compassion from everyone who has attended a talk or read about the campaign and made a promise to make a positive difference in the lives of people with dementia and their carers.
The team have been taking the ‘You Can Make a Difference’ campaign to 550 talks to date, reaching over 75,000, 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.
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.”
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. The pledges that we have received have been truly inspiring, and we’re looking forward to working with people and seeing those pledges fulfilled.”
If you have been inspired to make a pledge , please get in touch and email us your pledge at
Dementia Carer Voices and Erskine teaming up once again!
Massive thanks to our great friend Derek Barron @dtbarron for the kind invite to speak and give 4 talks at Erskine Hospital @Erskine1916 on 21st and 27th April. Project Engagement Lead Tommy had the great honour to speak at Erskine a few months ago.
We are honoured to be invited and continue our great relationship with Derek. We launched our first pledge talks and trees with Derek back in 2015 at NHSAA along with a short film.
We are looking forward to continue our work together with Derek over the coming years in his new role as Director of Care and linking up with our great friend Janice McAlister @janicemcalister again at the talks.
Erskine is Scotland’s foremost provider of care for veterans and their spouses, Erskine provides unrivalled nursing, residential, respite and dementia care within four homes across Scotland.  An important aspect of ensuring the care we provide is of the highest standard is to ensure our staff have the training, skills and knowledge to support them in delivering compassionate, person and relationship based care.
DCV Administrator, Laura McCulloch, attended the talks on the 21st at Erskine with Tommy, and William Griffiths, Policy and Information Intern, accompanied Tommy for the two on the 27th April.
Dementia Carer Voices attends the National Conference and Graduation for Dementia Champions
ALLIANCE Director, Irene Oldfather, and Policy and Information Intern, William Griffiths, attended the 7th cohort of Dementia Champions Graduation at Murrayfield Stadium on the 15th March. Through poster presentations and concurrent sessions, the event showcased and celebrated the work of Alzheimer’s Scotland Dementia Champions.
It was a good day with interesting posters and informative breakout sessions on informed consent, end of life care and more. Congratulations to all those who graduated as Dementia Champions on the day.
Remembering mums across the world on Mother’s Day
DCV marked Mother’s Day on the 26th March as an opportunity to reflect on motherly love and caring.
Happy Mother`s Day
The days we laughed
The days we cried
The days we shared the loss, the broken heart,
So it was less than half as hard.

The days we smiled,
The days we played ,
The days we danced,
The days we sang
Those were the best days
To remember forever.

The days we loved ……
the flowers, the sunshine, the rainbows, the waves, the birds,
the laughter and the tears of joy.

The memories ……
that can never be let go
That live in our hearts forever

But you – a part of me – and I of you –
so part of me died too.
But still you rescued me through the flowers, and the rainbows and the waves and the birds – for you loved the birds,
And the laughter and the tears of joy –
you wouldn’t let me go
to that too sad place.
And so the snowdrops and the birds and the words –
that was MY mum.
By Irene Oldfather
Caring for Mum
This month’s guest blog came from Alison Tait @Allisonrtait 
Allison is the Co-Chair at the Scottish Practice Nurse Association. Allison wrote her blog as a daughter.
Please read her full blog post here.
Allison with her mum Betty.
Dementia Carer Voices featured in the Danish Parliament 
Project Engagement Lead Tommy Whitelaw’s talks were the subject of discussion at the Danish Parliament on the 17th March when the organisation Good Life, Good Death, Good Grief held their ‘It Takes a Village’ exhibition in Copenhagen.
Denmark has been keen to learn the experiences from Scottish end of life care, and it was a great honour for Dementia Carer Voices to be one of their learning resources.
Hatton Lea Care Home Launch Pledge Initiative
Thank you to Caroline York, June Sugden and all at Hatton Lea Care Home for inviting Tommy to speak at the launch of their pledge tree on 13 April 2017.
Caroline and some colleagues heard Tommy speak at a Dementia Ambassadors Conference back in December 2016 and got in touch for us to give a talk at Hatton Lea Care launch of the pledge initiative.
You can read more from the care home press release in the Motherwell Times.
Caroline York, unit manager at the home, added:
“Tommy’s commitment to the pledge tree concept is extremely inspirational”.
Thank you all for a wonderful day the great kindness and inspirational pledges and tree
See our latest pledge posts from talks at Glasgow University, Poole Hospital and many more.
Future DCV events
Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” page over on our blog.
Dementia Carer Voices to show poster at Alzheimer’s Scotland and NHS Scotland Conferences
Dementia Carer Voices will present our poster explaining our project at the upcoming Alzheimer’s Scotland conference on the 2nd June and the NHS Scotland conference on the 20th – 21st June. If you’re attending either of those conferences, please do keep an eye out for our stand and have a chat with members of the team.
ALLIANCE Conference – Change: The Health and Social Care Integration event
Join the ALLIANCE, our members and partners at our 2017 annual conference on the 30th May. It will be focused on integration and change. What kind of change is needed? Where are the examples of change happening for the good? Is it happening fast enough in health and social care? What are the factors that drive the kind of change that makes a positive difference to people’s lives? How can we influence change?
The event will focus on putting people firmly at the centre of decision making and will cover broad areas that affect people’s lives. The programme and venue will be designed around different zones reflecting many of the key issues that most affect the lives of people who live with long term conditions, disabled people and unpaid carers.
Have a look at our conference agenda. Download your booking form here or call 0141 404 0231 to get support to fill in your form.

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

5 day tour with NHS Western Isles for dementia awareness week 2017

I  would like to take this opportunity to thank the Elizabeth Shelby, NHS Western Isles Dementia Consultant Nurse,  Denise Symington, NHS W...