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.
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.
Make a Difference: Inspiration and Pledges
The 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.
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 organised an incredible day in October 2015 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.
Project Engagement Lead Tommy Whitelaw visited Livingston home care team staff on the 14thApril, 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, 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
In February 2016 Project Engagement 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 the principles that everyone can make a difference to a person with dementia, their family, and carer.
Scottish Ambulance Service
The Scottish Ambulance Service have been fantastic ambassadors, taking forward the message of listening 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.Scottish Ambulance Service
Project Engagement Lead Tommy Whitelaw gave three talks at Hairmyres Hospital, allowing as many staff as possible to attend one of our ‘You Can Make a Difference’ sessions. This allowed Mairi-Louise Houldsworth, STAG Local Co-ordinator to collect pledges for their own pledge tree which they launched as part of the hospital’s Dementia Awareness Week activities. The whole team gathered to celebrate the launch of the Tree as well as the Dirctor of Hairmyres Hospital, Erica Reid.
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.
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 apart 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.
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.
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, Ffiona put together a guest blog piece:
‘On Monday the 7th March 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
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 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.”
Oxleas NHS Trust
Dementia Carer Voices was invited along to Oxleas NHS Trust’s 12th Annual Conference ‘Driving and Embedding Safety and Quality of Care’. The Trust had prepared pledge boards for the day in order to encourage people to make a commitment, which was a resounding success with over 135 delegates adding a personal pledge.
After attending a Make a Difference talk, Sister Clare Woodfield made this pledge:
“My pledge is to ask the organisation to give free parking to the unpaid carers who come to my hospital to care for their loved ones”
Her perseverance paid off, and from the start of August through to the end of December, on a trial basis, the trust created a number of ward based Carers’ passes to give carers free access to hospital car parks, making a huge difference in many carers’ lives.
The team at University Hospitals of Morecambe Bay NHS Foundation Trust really took forward the Make a Difference message, and asked staff to reflect on their practice the week before attending a talk. A total of 27 pledges trees had been traveling around the trust on the lead up to the talk, generating 300 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.
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: