Wednesday, 30 September 2015

Dementia Carer Voices September - October newsletter is now available

EWelcome 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 information on the Alzheimer's Europe Conference, opportunities to take part in the National Conversation on a Healthier Scotland and an update on our Make a Difference tour.


Thanks for reading my blog, You can now view my 8 short flims here!
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Tuesday, 15 September 2015

National Conversation on new benefits for carers

The Scottish Government wants to hear from people across the country as part of a national conversation on what would create a fairer Scotland.

The conversation includes a wide range of issues including social security and health and social care, and will also cover how we implement the new powers that will be devolved to Scotland following the Smith Commission recommendations.

One of the areas where new powers are proposed for the Scottish Parliament is social security benefits for carers of disabled people. The UK Government delivers this through Carers Allowance.

The draft legislation going through the UK Parliament will give the Scottish Parliament powers over benefits for carers currently sets out that a carer must:

  • be 16 years or above
  • must not be gainfully employed
  • must not be in full time education
  • must be caring for a recipient of a disability benefit.

It will be for the Scottish Parliament to agree what gainful employment and full time student mean for carers benefits in Scotland.

The Scottish Government are seeking views of people who have an interest in and are affected by the powers to come. They are particularly interested in the views of people with direct experience of Carers Allowance, including individual recipients and local organisations.

Information about who currently claims Carer’s Allowance in Scotland is available here.

Key questions

  • How should social security benefits support carers
  • What parts of Carers Allowance would you like to keep?
  • What do you think should change?
  • How should we better join up services for carers through benefits? For example on income maximisation.

Click here to find out more and to submit your ideas.

Speaking Breaking Barriers - Marie Curie - Dying with DementiaConference


With great thanks to Richard Meade Head of Policy and Public Affairs, and all at  Marie Curie Scotland Care and support for the kind invite to speak at 

      I am so very honored to be asked 

      You can get more info below or book a place via the link     HERE 

Earlier this year Marie Curie published Living and dying with dementia in Scotland: barriers to care which looked at the challenge of improving care and support available to people with dementia, and their families, at the end of life.

In the report, the charity highlighted that people with dementia are not being appropriately identified for end of life care, and that they have less access to, and receive poorer quality care than people with other terminal illnesses. Marie Curie believe that this is not good enough and needs to change.

The conference in November will explore how we can break these barriers and ensure that there is a stronger focus on the needs and experiences of people living and dying with dementia, and their families and carers. Discussions will focus on patient and family experiences, and policy and strategy. It is intended that the outcomes from the seminar will feed into on-going public policy work surrounding dementia at end of life.

Monday, 14 September 2015

Wednesday Speaking University Hospitals of Morecambe Bay


With great thanks to Lynne Wyre Deputy Chief Nurse, Sue Smith Executive Chief Nurse, Dianne Smith Matron for professional standards, Karen Dollard
And all at the University Hospitals of Morecambe Bay for the kind invite to speak at a ‘You can make a difference in Dementia’ conference September 16th

The day will be split in to two parts with myself speaking in the morning session followed by the Johns campaign in the afternoon

I am very honoured and looking forward to attending, meeting everyone,listening,learning and speaking

For more info and to attend please e mail Dianne Smith at

Friday, 11 September 2015

Speaking Sunshine House Wigan September 21st


Thank you so much to Barbara Nettleson and the wonderful team from Sunshine House in Wigan, for the kind invite back to speak at the day  community awareness and togetherness they are organizing in partnership with Wigan Council 

I have had the great honor to speak for 

Barbara before this time last year,you can read more about

 that day and the pledges received  HERE   

The even will take place between 10am and 1pm at Sunshine house 

Thanks for reading my blog, You can now view my 8 short flims here!
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Tuesday, 8 September 2015

Very Honored Speaking National Bereavement Conference Bolton September21st


With great thanks to Doctor Dawn Chaplin  Head Nurse Patient Experience/Clinical Dean for Nursing Heart of England NHS Foundation Trust and Wendy Lewis-Cordwell Director Bereavement Care Services Cumbria and Lancashire for the kind invite to Speak at  National Bereavement Conference Bolton wanderers Football Ground on September 21st 

I have had the great privilege to speak for Dawn on a few occasions before and I am so very honored to be asked to speak again 



Speaking Queen’s Nursing Institute Annual Conference September 28th


With great thanks to Dr Crystal Oldman @CrystalOldman Chief Executive of the Queen's Nursing Institute,Farida Barlas @FaridaBarlas Queen’s Nurse Network Manager and all at the Queen’s Nursing Institute @TheQNI for the kind invite and great honor to speak at 

the Queen’s Nursing Institute Annual Conference September 2015

Thank you all for the great kindness and honor 


More about The Queen’s Nursing Institute

The Queen’s Nursing Institute is a registered charity dedicated to improving the nursing care of people in their own homes.
We trained district nurses until the 1960s, in a model that was copied across the world. This model of care was instrumental in developing a comprehensive, highly-skilled service in the UK that meets the needs of millions of people every year.

Today we improve nursing in the home by:

  • Developing Queen's Nurses who are committed to high standards of care in the community, helping them to make improvements in practice and to act as leaders and role models to others
  • Influencing policies in England, Wales and Northern Ireland that affect healthcare in the home and the quality of community nursing services
  • Funding projects led by community nurses that improve care for their patients

Our vision:

We want excellent nursing care in the home for everyone who needs it there, provided by nurses and their teams who have specific skills and knowledge.
We see a future where more people are treated at home, rather than in hospital, technology is exploited to the full, and the relationship between nurse and patient is central to quality healthcare.

Thanks for reading my blog, You can now view my 8 short flims here!
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Speaking - Sustainable Leadership - Using Networks to Grow September29th

with great thanks to Shevaun Mullender-EGA Cohort 1:1 for the Kind invite to speak  
Sustainable Leadership - Using Networks to Grow Cohort  1.1
 Elizabeth Garrett Anderson programme  NHS  leadership Academy  on September 29th   
I have had the great privilege to speak for Shevaun before  as Part of a mini tour of Essex a few months back you can read more about that day  and the inspiring pledges received HERE             

Thank you shevaun and all connected for the kind opportunity to both attend and speak 


Thanks for reading my blog, You can now view my 8 short flims here!
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Monday, 7 September 2015

Friday Speaking University West Of Scotlanf Dumfries Campus


With great thanks to the University  West Of Scotland for the kind invite to give 8 talks to students across each 4 campus

I had the great honor to speak last year at the Ayr Campus, you can read the pledges from last years talks HERE

 and I am so honored to be invited back and to speak to students who attend Paisley ,Hamilton and Dumfries also 

A massive thank you to 

Amanda  Fiona and Raymond Ayr campus September 18th 2 talks  

Lindy and Dougie Paisley Campus  September 17th 2 talks 

Angela and Di Hamilton Campus September 24th 2 talks 

Lara and Michelle Dumfries campus  October 

Thank you all for the great kindness and opportunity ,I look forward to meeting everyone and speaking about our ' Make A DIfference ' tour 

Thursday, 3 September 2015

Speaking South Tyneside NHS Foundation Trust on September 7th



With great thanks to Dr Bob Brown Executive Director of Nursing, Allied Health Professions and Patient Safety for the kind invite to speak  at South Tyneside NHS Foundation Trust on September 7th 

I am good friends with Bob @bobjbrown on Twitter and very much look forward to meeting in person along with the rest of the team 

The event also coincides with the last month before the CEO of the trust retires and I am very honoured to be taking part  

 Background  to the Trustwe are an integrated hospital and community Trust of 5000 staff that is concentrating on building the awareness and confidence of staff to care for people with memory problems and dementia. Hundreds of our staff have watched Barbara's story, and we have Dementia Friendly status in the Trust plus in specific older person Wards and parts of the community we are working to provide additional support for families and older people with dementia

Wednesday, 2 September 2015

Can you help test New App to Support People Living with Dementia andtheir Carers

The Dementia Carer Voices team are excited to share a new opportunity to trial a new App which has been developed by four students from the Universities of Strathclyde and Glasgow.
They have developed Mindmate, an App designed to support people living with dementia, their families and carers. The App has a number of sections including Brain-Games, Physical Exercises, Nutrition Advice. It also has useful Everyday-Tools, such as Reminders and a My Story-Tool, as well as a Learn More Section, in which people can access further information on dementia. The students are supported by the University of Glasgow, University of Strathclyde, Enterprise Campus, Santander UK and the Scottish Institute for Enterprise.


The students are currently looking for people to test the app to get feedback on the app itself, and its impact on supporting self-management for people living with earlier stages of dementia and carers.
The testing phase will last one month and will consist of an initial meeting, to introduce the App and explain how to use it; a half-time meeting (which can also be done via phone) after two weeks, to check if everything is alright; and a final meeting at the end of the month, to see the results.
To become a tester, the person needs to have access to an iPad. If you do not have access to an iPad but still want to become a tester, the students will try their best to organise additional iPads for the testing period.
If you are interested in participating in this trial or would like to find out more information, please contact

Tuesday, 1 September 2015

The Joan Whitelaw Reminiscence Room Birmingham HeartlandsHospital- #ForMum


With great thanks to Dr Dawn Chaplin and all the wonderful team  Heartlands Hospital for the great honour and privilege in naming the  new reminiscence room in memory of my mum 

Thank  you from a son thank for the kindness and thank you for adding a wee smile to my heart 

My heart that misses my mum so  much 

Thank you for making my heart smile and for such a special day that I will never forget 



The Joan Whitelaw Reminiscence Rooms 

In Memory of Joan Whitelaw, an Inspirational Mother
And in recognition of her Inspirational Son and Carer, Tommy Whitelaw

Caring for Carers:

To ListenTo UnderstandTo Support
Promoting Compassionate Care for all in Hospital

With the wonderful kind Dr Dawn Chaplin 

With the wonderful kind Helen Mallard 

Attending the Alzheimer Europe Conference 2-4 September

With great  thanks to Ian Welsh  CEO and Irene Oldfather director  of Healthand Social Care Alliance Scotland (the ALLIANCE) for supporting and funding me to attend the  

I have been on our Dementia Carer Voices ' Make a Difference' Tour for the last year which carries on right through to the end of the year   and I am truly grateful for the funding to allow me to attend 

Thank you Ian,Irene and the ALLIANCE for supporting me to attend 

Thanks for reading my blog, You can now view my 8 short flims here!
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This is a campaign about people, its people who make a difference

This is a story about people, its people who make a difference

We are well into our Make a Difference Campaign and Tour, just passing the 295 talk mark with another 50 confirmed as of today and nearing 5,000 personal pledges to make a difference.

We are so very lucky to have met so many kind and caring people over the last year on this campaign, and I supposes that’s the heart of making a difference it’s all about people and relationships.

Over and above policies and strategies its people who change lives, It was people who when my mum was in hospital as they walked away from her bed I would think I am so glad we met you today, I feel less scared than I did before.  It was people as they walked out of our house, when caring, I would sit and  think I am so glad you were in our house today, I understand more than I did before.  People we had conversations with on the phone that would often help us through the rest of the day, on other occasions it was people who left us feeling lost ,scared and alone.

Dementia is everyone’s business it’s about people, it’s about the unique and remarkable life and love stories we all have, as do the people we meet and this tour and campaign is about.  I hope celebrating and empowering people, celebrating the amazing kindness care and compassion people give and show every day and empowering people that no matter what their role they have the opportunity to transform the lives and experiences of people living with dementia, their families and carers.

This is a story about people, this is a campaign about people so thank you for all you do and thank you for making a difference.


Thanks for reading my blog, You can now view my 8 short flims here!
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New Make A Difference Case Studies

ALLIANCE logo Dementia Carer RGB portrait
Dementia Carer Voices began its flagship ‘You Can Make a Difference’ campaign in February of last year, which 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 25,000 people over the course of 280 talks since February 2014. As the campaign continues this year, this total is set to increase throughout 2015.
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 unpaid carers across the Country 
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.
Make a Difference: Inspiration and Pledges
Parliament Poster 4The campaign has undertaken an unprecedented level of outreach work, through giving 280 talks, delivering several workshops, distributing information and guidance, having information stands and hosting an exhibition at the Scottish Parliament.
The awareness talks involve Project Engagement Lead Tommy Whitelaw sharing his experiences in caring for his late mother, Joan, along with the experiences of carers who have shared their stories with the project in the hopes of improving the experiences of people living with dementia, their families and carers. The campaign provides people with the opportunity to reflect on these personal stories and make their own pledge to make a difference.
To date, the campaign has gathered MORE than 4,500 pledges 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 site 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.

Make a Difference Lessons: Embedding the Campaign
There have been a variety of ways in which the You Can Make a Difference campaign has been taken forward by people to encourage others to make a difference in the lives of people with dementia, their families and carers. These have been health boards, organisations and individuals who have committed to listening to and sharing the experiences of carers to influence how they interact with people in their own lives, be it in their personal or professional life. Some of these are detailed below.
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 has organised an incredible day to inspire people to make a pledge to make a difference.
They have arranged to host an afternoon tea session where Tommy will give an awareness talk and people will then have 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 are using the wood from these trees to make  hiring a woodcarver to make a huge jigsaw spelling out Anam Cara with each letter made up of engraved pledges, celebrating their commitment to making a difference and encouraging people to participate.
Scottish Ambulance Service
The Scottish Ambulance Service have been fantastic ambassadors, taking forward the message of listening page 4 photo and learning to 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.
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.
Raith Gates 1 Raith Gates 2

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 Project Engagement 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.
7 4
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. The video is available to view at
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.
Abertay University:
The University of Abertay has also embedded the ‘You Can Make a Difference’ campaign in their teaching. Emma Lamont and Robin Ion, who are both lecturers in mental health nursing invited Tommy Whitelaw to give a talk to students who will be going out on placements in various locations. The lecturer will then ask the students if they were able to fulfil their pledges, and will look at the potential barriers and how to overcome these in order to provide the best support for the people they work with. The campaign has been shared on twitter, with a daily pledge going out every day for a week to showcase some of the pledges and to inspire others to make a difference.
The Care Inspectorate:
The Care Inspectorate have embraced the Make a Difference campaign, working with staff to embed a person centred culture which listens to people with dementia and their carers. This has included doing a number of satellite events in Aberdeen, Irvine, Western Isles, Shetland and Inverness which share the Make a Difference campaign and encourage people to make a pledge to make a difference. The Care Inspectorate also have a dedicated web page on their website with information on the campaign and pledges, which signposts people to further sources of information in order to support them to fulfil their pledge.
Rachel’s Pledge
Rachel is a newly qualified nurse who was at a Make a Difference talk whilst she was studying at Abertay University. She invited Tommy to speak to her new colleagues and organised and promoted the event, determined that those around her would have the opportunity to attend a talk and make a pledge.
Speaking of the impact Tommy’s talk had on her, Rachel said: “Hearing Tommy speak really put things in perspective for me and I want others to have that same knowledge, because it really is precious.”
Pledges Trees 
12th Annual Conference ‘Driving and Embedding Safety and Quality of Care’

Hinchingbrooke Hospital – Pledge Trees
Burton Hospital NHS Foundation Trust Dementia Strategy and Forget Me Not Care Bundle Launch
Joan Whitelaw Reminiscence Room
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:
Project Engagement Lead
Policy & Information Assistant
Telephone – 0141 404 0233
For regular updates, please visit the Dementia Carer Voices Blog Site
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 ...