In a poignant reflection, journalist Nicci Gerrard shares her personal journey of grief and activism following the tragic passing of her father, John, who suffered from dementia. A decade ago, Gerrard launched John’s Campaign in the pages of The Observer, aiming to secure the right for dementia patients to be accompanied by loved ones during hospital stays. The campaign quickly gained traction, resonating with thousands of readers who had witnessed similar heartbreaking experiences.
A Tireless Fight for Dignity
Despite initial progress, with hospitals across England pledging support, Gerrard and her co-founder Julia Jones soon realized that their work was far from over. They expanded their focus to care homes, where many residents were being denied visits from family members. The campaign evolved into a broader movement advocating for the unequivocal right of anyone with special needs to be accompanied in any setting.
It’s about keeping people connected; about our belief that the state must not have the power to put asunder those who are intimately bound together; about selfhood; about the healing power of love.
– Nicci Gerrard
Pandemic Devastation
The arrival of the COVID-19 pandemic dealt a devastating blow to the progress made by John’s Campaign. Care home residents were cut off from loved ones for months, leading to a spike in non-Covid deaths as many turned their faces to the wall in despair. The normalization of bureaucratic cruelty and the violation of human rights on a mass scale left families helpless and traumatized.
Legal Battles and Hopes for Change
Throughout the pandemic, John’s Campaign engaged in continuous legal disputes with the government over guidance for care homes and hospitals. Now, alongside other advocacy groups, they are working to enshrine the right to a care supporter in law. A draft bill has been drawn up, offering a glimmer of hope for a more compassionate future.
Gerrard emphasizes the urgency of change, reminding us that we are all vulnerable to the ravages of time and the potential need for care. She argues that recognizing the transformative power of love and human connection is essential to restoring dignity and power to those who have been stripped of it.
As John’s Campaign marks its tenth anniversary, Gerrard’s powerful words serve as a clarion call for society to embrace its shared humanity and ensure that no one faces the darkness alone. The fight for dementia rights is a battle for the soul of our society, one that demands unwavering commitment and the courage to push through hundreds of smaller doors until a kinder world emerges.
