Case Studies
You Can Make a Difference
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 20,000 people over the course of 230 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 the estimated 650,000 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.
Make a Difference: Inspiration and Pledges
The campaign has undertaken an unprecedented level of outreach work, through giving 230 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 3,500 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.
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.
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 www.youtube.com/watch?v=bGLwzE8YAyM.
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.
Allied Health Professionals:
The Make a Difference campaign has been taken forward by many individuals who have shared the campaign and actively encouraged others to do so. Shelagh Creegan, Associate AHP Director for Mental Health and Learning Disabilities has been instrumental in taking this campaign forward, sharing it with fellow Allied Health Professionals. She has created a ‘living pledge tree’ that people add their pledges to on red leaves, and transfer these to green leaves once they have been fulfilled. Shelagh is sharing this with colleagues and encouraging them to make their pledge, and indeed to fulfil it.
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.”
we also have films that can be shared
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.
” 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.
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
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.
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 http://youtu.be/u2BAxSCcic0
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 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.
Full version of Make a difference with the staff nhsaaa
#Rights and the Carer Voice
Over and above the 230 talk tour, the project team have
engaged extensively with people with dementia, their families and carers, along
with those whose caring journey has ended. The team will continue to work to
ensure that people with lived experience inform future policy and services
provision, and that they are aware of their rights and of sources of support to
navigate the changing health and social care system.
The promotion of carers rights is a key area of focus for the Dementia Carer Voices project. Throughout the engagement work that has been undertaken, the team have consistently shared information such as the Charter of Rights for People with Dementia and their Carers in Scotland in order to empower carers to be aware of and access their rights, and have continued to stress the importance of recognising and respecting the vital role that carers play. The project distributes information in a mixed medium format, including hard copies of information, videos and electronic communications; signposts people to support; fosters the creation of new links within communities and; promotes a greater awareness of the carer journey. Through this engagement, the team have worked to increase the level of support and information for carers on what they are entitled to and what routes are available to them if their rights are not being respected.
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.
About Dementia Carer
Voices
Dementia Carer
Voices seeks to:
Harness the work of Tommy Whitelaw
·
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 professionals, students and the wider public
·
Highlight
the role of carers as natural resources; carers as people with needs; carers as
people with independent lives
·
Empower
carers by providing information based on the Charter of Rights and Carers
Strategy about caring for someone with dementia
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.
For further information on the project, please contact:
Programme Director Irene.Oldfather@alliance-scotland.org.uk
Project Engagement Lead Tommy.Whitelaw@alliance-scotland.org.uk
Policy & Information Assistant Sarah.McDermott@alliance-scotland.org.uk
Administrator Laura.McCulloch@alliance-scotland.org.uk
Telephone – 0141 404 0233
For regular updates, please visit the Dementia Carer Voices Blog Site atwww.dementiacarervoices.wordpress.com
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