Tuesday 3 February 2016. On Wednesday 3rd February CSH Surrey is delighted to welcome Tommy Whitelaw, 'Son, Carer, Campaigner', as he continues his 'one man's mission to raise awareness of dementia'.
Tommy, from Scotland, was a full-time carer for five years for his Mum Joan until she passed away in September 2012. His experiences led him to launch 'Tommy On Tour’ in 2011, where he walked around Scotland’s towns and cities to collect hundreds of life story letters detailing the experiences of individuals caring for a loved one living with dementia.
Since then he has engaged with thousands of carers and health/social care professionals through his ‘Tommy on Tour’ blog, Twitter (@tommyNtour) and through his role as Project Engagement Lead with the Health and Social Care Alliance Scotland's Dementia Carer Voices Project. He has conducted more than 380 talks across the UK to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role.
The Dementia Carer Voices has gathered just over 7500 personal pledges as part of its “You Can Make a Difference” campaign, which continues to give a voice to carers and raise awareness about what it means to live with dementia. It encourages people to listen to the experiences of people who have cared for a loved one with dementia, thus giving health and social care professionals and students a fuller understanding of what it means to be a carer of someone with dementia and to think how they can make a positive difference in people’s lives.
Tommy will share his experiences through four talks on 3rd February at CSH Surrey's community hospitals (Dorking Community Hospital, Leatherhead Community Hospital, New Epsom & Ewell Community Hospital, and Molesey Community Hospital), where he will highlight the impact that health professionals can make to the journeys of carers. He says: "People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer, if I had been propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world."
Tommy says: "When my Mum was diagnosed with vascular dementia, I thought to myself “it’ll be okay, we’ll get through this.” What I soon learned as her carer, was that dementia was an unpredictable illness which brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to had suddenly changed again. I wondered whether the struggles I faced were mine and mine alone, and how other carers in my situation had managed to cope.
"Through the stories I have received through my campaign I have learnt that the challenges I faced were far from unique, and that meeting and speaking to others in the same situation was one of the most beneficial things I could have done. One issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia and the way in which we perceive this illness as a wider society. My door was always open but no-one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.
"The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed many touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, and continue to do so now.
"Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation."
Karen Masetti, Head of Nursing at CSH Surrey, says: "We invited Tommy to come this week as it is National Dignity Action week and in Tommy's story he talks about how difficult it was for him to maintain his mother’s privacy and dignity needs, which is a very moving story. Our nurses, therapists and support teams will be joining thousands of others in making pledges around how they can make a difference to the lives of people with dementia and their carers. We will be creating a pledge tree to support each other to fulfil our pledges and to allow our employees to reflect on their clinical practice. By pledging to make what are often simple changes, we will be supporting Tommy's campaign to make a positive difference."
Anyone can make a pledge, which can be submitted via email (dementiacarersvoices@alliance-scotland.org.uk), twitter @DementiaCarerVo or on the Dementia Carer Voice’s website https://dementiacarervoices.wordpress.com/.