Barbara Pointon MBE – an advocate for the carer’s voice

I am truly saddened to hear about the death of Barbara Pointon MBE.

Barbara was a pioneer for better care for families caring for people with dementia. She will be best remembered for the TV documentary Malcolm and Barbara: A Love Story, the documentary was honest in its portrayal of the realities of looking after someone with advanced dementia. Barbara also fought and won a landmark case when she challenged Continuing Health Care (CHC) arguing she was entitled to funding as she was caring for her husband with dementia at home to the same level of a nurse with a team of care workers. Up until then CHC funding was only available for people in care homes. This case changed the landscape for CHC and was an important step in the NHS recognising that people with advanced dementia may have complex needs which can be met in any setting.

Barbara was a strong advocate for the Carers Voice working hard to ensure their expertise was recognised.

I first met Barbara through Uniting Carers at Dementia UK and we both contributed to the Expert Reference Group when we were working on the first dementia strategy in 2009. Barbara joined me in championing the needs of carers and helped in launching the Dementia Action Alliance’s Carers’ Call to Action.  This provided a coherent, coordinated and concerted response to the intolerable situation that dementia carers found themselves in highlighting their unique needs and rights.

Barbara was a powerful public speaker who was influential in making sure carers have a voice. Her voice and actions was one of the reasons the charity tide was set up as a legacy from the Carers Call2Action and I am immensely proud to have known her.

 

Jean Tottie

Director and Chair tide
Winner – Lifetime Achievement in Dementia Care 2018