A campaigner who had a successful career in the music business until his mother developed vascular dementia recently spoke to staff at the Lancashire Care NHS Foundation Trust about the experiences of carers of people living with dementia and what health professionals could do to understand their needs.
Tommy Whitelaw, a veteran dementia campaigner, was guest speaker at the Dementia Awareness and Make a Pledge Event on Friday 22 July at The Harbour, the Trust’s mental health hospital in Blackpool.
The event was held as part of the Trust’s commitment to ensure people with dementia feel understood, valued and able to contribute to their community. During his speech, Tommy called on health and social care professionals to reflect on the lived experience of people affected by dementia and identify actions they could take back and apply in their everyday practice.
Tommy also spoke about his experiences, the need to improve the experience of carers and the people they care for, and the need to provide them with the opportunity to speak about their own experiences. He also highlighted the transformational impact that listening, kindness and understanding made to him and the importance of looking beyond people’s diagnosis to engage with them as individuals.
Tommy Whitelaw, Dementia Campaigner, said, “As a full time carer, I often felt lonely and isolated, and found accessing services difficult. Once, we reached a crisis when I didn’t think I could go on any longer. Nobody was showing me how to care for my mum. I went to a local health organisation and asked for help and was told to go home and phone a 0800 number. I was standing there, crying, holding my mum’s hands, asking someone to help us, and they gave me a post-it sticker with a phone number on it. It felt like nobody was helping us.”
These frustrations inspired him to launch a blog and invite other carers to write to him about their experiences. “All too often we judge people by a diagnosis or a condition. For 68 years my mum was the most hard-working, kind, amazing woman – I was lucky to have her. Then she got diagnosed with dementia and in people’s eyes she stopped being Joan Whitelaw, she became someone with dementia,” he added.
Jo Blofeld, Patient and Carer Experience Lead in Adult Community Services at the Trust, said: “It’s been a delight to bring Tommy Whitelaw to the Trust. His story is a real powerful one and underscores the importance and value of listening to people’s lived experience of services to find ways to improve them. His message is a meaningful one and encourages one and all to make a pledge about one thing they would do differently to change the life of a person living with dementia and their carers. It is this very ethos and patient experience that we as a Trust are committed to threading throughout our organisation.”
Tommy Whitelaw has been telling the story of his and his mother’s journey with dementia on Twitter and is now—as part of his tour and the “Dementia Carer Voices Make a Difference Campaign”—championing dementia awareness throughout the UK, including at numerous NHS trusts.
The event was opened by Heather Tierney-Moore, Chief Executive Officer at the Trust. Other speakers at the event included Amanda Thornton, Clinical Director for the Adult Community Network, who spoke about creating a dementia vision that’s co-produced.