Tommy’s Story

Tommy believes that it only takes one great nurse, care assistant or neighbour to make a difference. And no matter what their role and potential is their ability to reach out, be respectful and show kindness has an enormous and positive impact. Touchingly, it was Joan who taught Tommy that people are kind and amazing and to never stop seeing it…

For Tommy, to combat his loneliness, he started a blog to talk about his experiences and speak to others who were also living with dementia to see if their struggles were the same as his. This was the start of him raising awareness of dementia through campaigning…

Tommy started asking for and collecting life story letters from people across Scotland who was caring for a loved one with dementia. He also organised respite care for Joan while he walked around Scotland for one week collecting hundreds more of these letters – all citing similar experiences to his of stress, isolation and sadness over the lack of support and information available about dementia. But all the letters talked about love; the love the carer had for the person they helped.

Tommy presented these letters to then Health Secretary for Scotland, Nicola Sturgeon, who was incredibly supportive and encouraged Tommy to collect more letters and keep campaigning to push the Scottish Parliament, to take action.

Sadly, Joan passed away in September 2012. Since then Tommy has been devoted to his Tommy on Tourcampaign, which has seen him set up over 570 talks with carers and healthcare professionals – his presentation to Dementia UK was his 497^th!  He is also the Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices Project.

The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia, with a view to raising awareness among health and social care professionals, and wider society of its impact on families and the importance of empowering carers in carrying out this difficult but vital role.

Dementia Carer Voices is also working on a ‘You Can Make a Difference’ campaign, where it is asking people working in health and social care services to making a pledge by asking – what one thing will you do to make a difference to the lives of people with dementia and their carers? To date over 10,000 pledges have been made. Tommy’s work is making a huge difference and he has also just started working with the Chief Nursing Office in Scotland to amplify the needs of people living with dementia.

For Tommy, the person with dementia and their carer has the right to be asked: What matters to you? Who matters to you? How do you want your day to look? What information and help do you need to make this happen?