Tony Henderson, 55, from Bacton, Norfolk, has been left housebound by kidney failure. He is on dialysis nearly four hours a day, six days a week. At the same time, he’s recovering from the lasting effects of three heart attacks he’s had over the past year. His heart is under tremendous stress from the unrelenting demand for oxygenated blood that his body requires. To treat his numerous health conditions, he takes 20 different medications. Despite these challenges, Henderson continues to lead with her passion as a traveling chef three days a week. In short, he has given 40 years of his life to the preservation of this great art.
Yet Henderson’s efforts to find financial assistance using Personal Independence Payments (PIP) have been an uphill battle. He’d been refused PIP on two occasions. Now, he is bringing the Department for Work and Pensions (DWP) before an employment tribunal to appeal that decision. This turn of events has rightfully raised alarm. You need a visible disability, and many question whether the PIP system does a good job of reaching the most medically vulnerable.
Henderson’s working hours have drastically reduced. Where he used to work 50 to 55 hours a week, he can’t keep up with even 25 hours today. Often forced to play that role, he gives credit to his employer for listening and being supportive when he told them his story. They offered him a chair and frequent breaks, which have been crucial to his health.
“He’s getting penalised for going to work, even though it makes his mental health better,” said Sarah Henderson, Tony’s wife. “The whole PIP system needs to change.”
Tony’s wife, Sarah, has been vocal about her aggravation with kidney failure’s invisibility. To counter that stigma, she addresses the many myths and misconceptions that cloud the condition. The biggest misconception by far is the assumption that it’s entirely due to our lifestyle.
“A lot of people think it’s down to drinking too much or an unhealthy lifestyle and it’s not,” she noted.
Beyond navigating new realities in his work life, Tony has suffered serious blow after serious blow medically. He now has a donor kidney from Sarah, which his body ultimately rejected. When a second transplant in 2020 failed, it forced him back into dialysis. The body burden from his illness has resulted in extreme fatigue and pain.
“Once your kidneys are failing, you feel frequently sick, you will be absolutely exhausted most of the time and your bones ache,” explained Fiona Loud, an advocate for kidney health.
Tony has found it increasingly difficult to articulate the reality of his condition to those making decisions about his welfare. He recalled a different appraisal where staff appeared out of touch with the realities of what dialysis is and how it affects day to day life.
“No-one seemed to know during my last appraisal what dialysis actually was or how it makes you feel,” he said.
Though Tony has to overcome much adversity, he never loses hope. He continues to battle for his condition to be recognized and the help that he feels he is owed. He expressed his anger at the arbitrary criteria that the federal government has been using to evaluate PIP applications.
“I’m actually three times as bad, health-wise and apparently [the government hasn’t] changed the criteria,” he stated.
Co-authored by Sarah Henderson, this piece of writing emphasized both the emotional and financial burdens of living with kidney failure. In addition to soaring healthcare costs, those on dialysis must contend with high utility expenses. Their higher electricity and water usage plays a huge role in these costs.
“If you are on dialysis you use more electricity and water which also affects your income,” Fiona Loud added.
