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Tommy’s StoryOctober 4, 2016
Dementia UK was honoured that Tommy Whitelaw joined us at our Admiral Nursing Forum to talk about his experience of dementia and his campaigning. This is Tommy’s story…
Tommy returned to his family home in Glasgow, in 2007, at a cross-road in his life. Having spent 20 years in the music industry travelling the world, Tommy was in need of a break for a few months and like many children of any age, he knew he would find comfort and solace with his Mum, Joan, and over her hearty pots of soup that she would cook. But when Tommy returned he realised that life had changed for Joan.
It was the small changes in Joan that Tommy first noticed, but as the months passed it became more apparent – Tommy was caring for and supporting his mother. Joan expressed her fears to Tommy and asked him not to leave her; and he kept his word. A year after Tommy returned home Joan was diagnosed with vascular dementia.
Joan and Tommy struggled together – with understanding the dementia, the caring, and the isolation and loneliness as their world became smaller. In desperation and in crisis, Tommy reached out to get more care but was told to go to the ‘back of the queue’. However, he was grateful to one District Nurse who visited at 10am every Friday, and gave him and Joan advice and support (especially with personal care), and this changed their world.
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 497th! 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?