“Dad becoming ill was a gradual process,” recalls Farhaz’s son Mohammed, chatting quietly in the living room of their modest family home in east London while his dad sleeps in a nearby room. “He began to get forgetful, emotional, and started crying a lot.”

Farhaz’s family knew something was wrong but didn’t know what. Initially doctors suspected depression, but his symptoms didn’t quite ring true. Eventually a nurse was sent to assess Farhaz at home and confirmed the family’s fears. Farhaz was not depressed. Instead, he had the early signs of dementia.

Since that day 17 years ago, Farhaz’s family has been on a bewildering and stressful journey; not only watching their dad’s health deteriorate, but also having to battle for proper state-funded care that he is entitled to. 

Mohammed sits with his father, Farhaz, at their home in east London. Farhaz suffers from severe dementia.  © 2018 Stephanie Hancock/Human Rights Watch

“His dementia is severe,” said Mohammed. “He’s not the same dad that I remember. I feel sorry for my younger brother as he’s never really had a father. Dad can be very aggressive, he gets confused, he often hallucinates at night, and he’s tried to wander outdoors at night. Six months ago he ate half a tub of antiseptic diaper cream – I had to call for medical help. We don’t know what’s going through his mind.”

Coupled with the dementia, Farhaz has a host of other medical problems including diabetes, arthritis and a heart condition. He also cannot control his bowels and urination, and needs support to bathe at least once a day.

New Human Rights Watch research shows that social care to support older people like Farhaz is increasingly under threat from official assessments that can be rushed, incomplete, or inaccurate.  

A new report by the UK ombudsman logging complaints about local government confirms a 140 percent increase in social care complaints in England since 2010 and – most worryingly – notes that the sheer volume of complaints indicates problems with “whole systems and policies,” not “one-off mistakes.”

This is no surprise to Mohammed, who as well as holding down a busy job for an international charity, carefully supervises his dad’s care plan.

Until three years ago Farhaz received a comprehensive care package, including daily visits from experienced carers to help him shower and check his medication, a volunteer to read to him, and three days a week at a local daycare center to give his wife Barsha, who cares full-time for her husband, some time off.

But gradually, service after service began to get cut back. There was no reasonable explanation, as Farhaz’s condition had not improved. Nevertheless, local authorities reduced carers’ visits from two hours to just one, further impacting family life. The family refuses to leave Farhaz alone, for fear he may hurt himself.

Farhaz prepares to get out of bed, helped by his wife Barsha. © 2018 Stephanie Hancock/Human Rights Watch

“The assessment teams only come with the objective to cut services,” said Farhaz’s wife Barsha. “Look at the way you’re sitting there writing everything down,” she said, gesturing to my notepad. “That shows you’re listening. We don’t have that from the officials. They just want to be here very quickly and then leave.”

When a letter arrived warning the family that budget cuts meant they would soon have to pay £250 a week (US$312) for the care Farhaz had previously received for free, alarm bells began ringing even louder.

So when the family was invited to take part in a major assessment, to see if Farhaz would be eligible for full state-funded care under a different system, they jumped at the chance. But little did they realize how stressful it would be.

The case worker warned Mohammed about how officials are evaluating clients’ cognitive abilities. He says she told him: “Mohammed, you need to be careful with the assessments. I’ve worked with these guys, they’ll agree with you during the assessment and then change it. They’ll write it down correctly at the time, but when they get back to the office, they change it.”

Mohammed felt doubtful, but when he personally oversaw the family’s care assessment, he was shocked to see everything she said “come to fruition.”

After observing his dad’s three-hour assessment meeting at home, Mohammed asked to see both the official’s original report from the family visit, and the final draft of the assessment they submitted for determination of services.

“Lo and behold a whole bunch of things were missing,” said Mohammed. “The numbers were all off, [Farhaz’s] problems which were ‘severe’ had become ‘high’, or ‘high’ had become ‘medium’.”

Mohammed leafs through piles of papers and medical records that he looks after on behalf of his father. © 2018 Stephanie Hancock/Human Rights Watch

After Mohammed personally intervened, officials relented, and thankfully Farhaz is now again receiving the full care he needs. But Farhaz’s family is angry about what they feel was blatant downplaying of Farhaz’s condition and support needs.

“It’s kind of horrifying,” said Mohammed. “You’re working with vulnerable people here.”

Farhaz’s family is trying to put the stress of multiple failed assessments behind them, and focus on the husband and father they dearly love.

“I still feel close to him,” said Barsha. “When I leave the room he says ‘Where did that lady go?’ He can’t use my name but he means me! He always asks where I am.”

But Mohammad still wonders if other people in England might be going through the same battle. “When our case worker warned us, she was basing it on her own personal experience. She wasn’t saying we were the only ones - it’s like an open secret. If we’re experiencing it, so is everyone else.” 

Farhaz is lucky: his family was warned the assessment might be unfair and was able to fight back. Not everyone has such powerful advocates.