A NORTH Belfast woman is calling on the Health Minister to provide equality in dementia service provision.
Liz Cunningham and fellow members of Dementia NI recently held a virtual meeting with Health Minister Robin Swann to highlight challenges they face and have called on him to address issues affecting dementia services.
Liz, a former IT teacher for people with disabilities, lives with her husband Philip and has been a member of Dementia NI for nine years after being diagnosed with Posterior Cortical Atrophy (PCA), a rare form of dementia, where the signals in the brain cause vison and balance problems, as well as Frontotemporal dementia.
Among the issues members of the charity’s Empower and Support Group highlighted with the Minister were the need for improved early onset dementia services, and for consistency of services across Trust areas in Northern Ireland.
Members also highlighted the importance of tackling long waiting lists for assessments and review appointments and funding for dementia research. They emphasised too that people living with dementia should be at the heart of any decision making about these vital services.
“PCA is a progressive and irreversible disease and over the years I have lost some skills and abilities,” explained Liz.
“It has been hell at times but working with Dementia NI makes me feel good about helping others to make changes to dementia care.
“One of the significant things we have done as members of the charity is influencing the regional care pathway for dementia. It was created with the health service to be easily accessible to people living with dementia and their families, and we are proud to have played a role in shaping this.
“The opportunity to meet with the Health Minister was very welcome as it is so important that he hears about the issues affecting people with dementia from those of us who are living with it and it felt great to be listened to.
“I discussed with him that dementia research is underfunded, especially as the number of people being diagnosed is increasing each year. We would like funding to be focused on dementia research.”
During the meeting the Minister congratulated Dementia NI for reaching the final of the national Dementia Hero Awards in recognition of its innovative approach to engaging members during the pandemic.
Speaking after the meeting Mr Swann said: “The narrative around dementia can often be a negative one but the Dementia NI message is that life goes on following a diagnosis and it was inspiring to meet members who are living well with dementia and making sure that their voices are heard.
“I was impressed to hear more about the innovative work the charity does, particularly over lockdown when it provided dementia friendly tablet devices and technology training.
“The charity’s work challenges the misconception that people living with dementia can’t learn new skills and ensured that members, who may have otherwise been socially isolated, had contact with people who understood how they are feeling.
“We had an in-depth discussion which has given me useful insights into the challenges that people diagnosed are facing and I look forward to engaging further with the group about the important issues they raised about dementia services.”
