Open to abuse

The publication of a report on abuse of people with dementia has raised questions about levels of abuse affecting disabled people, across the impairment spectrum, living in the social care system. Cathy Reay investigates

Margaret Rylett, mother of Amy, a 23-year-old girl with cerebral palsy (CP), epilepsy and learning difficulties, says her daughter is being abused but
no-one believes her.

“I’ll complain to anyone who might listen – her carers, social services, managers at the care home; they tried to tell me that she harms herself… but it’s physically impossible for that to happen. We don’t know where to go for support,” she told Disability Now.

The Government has pledged to stop the abuse of vulnerable adults, whether in a home or care environment, but a University College London (UCL) study conducted in January 2009 found that over half of adults with dementia have been mistreated by a family carer, through neglect, theft, physical or emotional abuse.

To Disability Now’s knowledge, this is the only significant research in recent years into carer abuse, an issue that has been significantly overlooked by the Government and the media. Furthermore, when we contacted disabled people to talk about abusive care, we were met with reluctance from disabled people too afraid to speak out.

“I’m too scared that my abuser will read this,” revealed one woman. “I’m still being abused and I’m worried that talking to you will make it worse for me.”

Willing to speak or not, everyone we contacted wanted this story to be forced into the public eye so the Government might consider providing better measures to ensure the safety of disabled people who rely on care giving.

Neil Hunt, chief executive of the Alzheimer’s Society, said: “It is essential that those working in the fields of health and social care are given appropriate training, backed up with ongoing assessment and better regulation, to ensure standards of care in all settings are driven up. There is no excuse for abuse and we should not rest until it has been eradicated.”

Mrs Rylett agreed. She first suspected something was wrong with Amy’s care in July 2007 when she was told her daughter had fallen out of a chair. “We had the same chair at home and had had it for years, it was very secure and she’d never fallen out of it before.

A couple of months later Amy was driven home on a bus and she was crying; she was obviously in pain. The seat she was on had been tampered with and she had been forced into a really uncomfortable position. Nobody had helped her.”

Since then, Amy has also come home with mysteriously swollen ears and a stabbed thumb. Mrs Rylett is desperate to move her daughter to another day care centre but as they live in Anglesey, there isn’t much choice. “There are only two others near us and they said they are full. I don’t know what to do.”

Gary Martin, former head of policy at Action on Elder Abuse, told Disability Now that Amy’s case is unusual. “Physically abusive carers in the UK are not common, but neglect and abuse of trust often features in a carer-patient relationship,” he said. “People try to put the Hollywood treatment on things like this by insinuating that abuse is purely physical, but often it’s the less noticeable things that those in power can do to vulnerable people that can be more damaging.”

This is evident in the case of one woman, who has learning difficulties and wanted to remain anonymous, who told us how, over five years, a carer coerced her into giving her over £7,500 in cash. “She told me that she was going to lose her home because she couldn’t pay the mortgage,” the woman explained.

“I had just come into quite a bit of money as my parents died. I was actually taking her to the cash point and getting money out for her without realising that it mounts up. I’d give her about £300 each time, sometimes more.”

The woman said that, although she knew what the carer was doing was wrong, the longer it continued the guiltier she felt. “She was wrong for asking me and I knew what she was doing was wrong but I felt like I was encouraging her by giving her the money. I didn’t want to have to ask for help because I felt like it was admitting I couldn’t be independent.”

Eventually she told a neighbour who then informed social services and the police were called. With the help of Respond, a charity supporting people with learning disabilities affected by abuse, the anonymous woman was reimbursed in full.

Noelle Blackman, director at Respond, said that without Respond’s help, the woman wouldn’t have seen her money again. “This woman needed that support we offer to support her through claiming her money back.

“We are hoping to find the funding to reopen our support helpline facility at some point in the future as, until then, many families will find it difficult to find the kind of ongoing support that we offered.”

The woman didn’t press charges on her carer, a decision she now regrets as, when she made it, she wasn’t given any guidance or support on speaking to the police.

Sylvia and Michael Brookstein, the former of whom has learning difficulties, also turned to Respond when they had a rude and neglective support worker. “One day, on the way home from shopping, she got stroppy and said she was going home. It was only 11am, two hours before her shift finished, and we were stranded with the shopping,” said Mrs Brookstein.

Mrs Brookstein added: “We complained to the head office and she got the sack.

Afterwards, she would come round and just stand outside, the second time she rang the doorbell and asked to come inside but I said “no way”. So I told the manager as soon as I could – I was worried about what she might do if she could come inside the house.”

Ms Blackman said that it was lucky the Brooksteins knew who to turn to, as often people don’t know. “It can be very difficult for people who are being abused by the people they are dependent on to know what they can do to stop the abuse,” she said.

“Social services need to ensure that they give clear advice to people about who they can talk to if they are unhappy with the support they are receiving. They also should consider advocacy schemes whereby isolated people have someone independent who is keeping an eye on the kind of care they are getting.”

An anonymous disabled man with CP said that, during university, his boundaries were frequently tested by his constantly changing roster of personal assistants. “There was one guy, who was only 20, who was very awkward around me whenever I was naked.

He would stand there and look up at the ceiling when he was supposed to be helping me wash.

He left the job two months in and a year later he called me to apologise for his behaviour. We maintained contact and eventually he told me he’d been in love with me all along and that he wanted to be with me and if he couldn’t be with me, he’d kill himself.”

In the same year, the same man was approached by one of his female assistants. “She took off her top in the shower and propositioned me and tried to kiss me. I told her it wasn’t appropriate; she was helping me to wash in the shower, it felt like an abuse of power. She could have told me before, when I was clothed, but maybe in that moment of confidence she thought, well, ‘he’s naked and vulnerable’. And I was.”

Looking back on the situation now, the man feels his care problems could have attributed to why he felt so stressed that year.

“My attitude in dealing with it was just to move on and get on with life, which is good because you don’t want anything making you unhappy, but it does affect you underneath the surface even if you don’t realise it,” he said.

“The important thing is that you feel you can tell people. I’m a confident person so I had no problem telling my friends and family about these carers and what they had done, which helped me to feel more confident around them afterwards, because I knew that if anything bad happened people would be aware of the signs.”

However, not everyone has had such an empowering experience, which is why Claudia Cooper, a senior lecturer in older people’s mental health at UCL and lead author of the study into caring for family members with dementia, hopes that her research will help to guide Government into working on new plans to combat carer abuse.

“The main aim of our research programme is to develop ways to reduce or prevent abusive behaviour. We needed to know the scale of the problem to work out how to tackle it, and we are now going on to look at ways of reducing and preventing abuse,” she said.

Ms Cooper’s study was based on carers that came forward admitting that they had abused a family member in their care. But because many carers were too afraid to talk about what they may have done, the figure could actually be far more startling. “Some abuse will inevitably be hidden, and this may be the most serious abuse,” she said.

Disability Now believes that it is vital that this issue is addressed to protect disabled people from potential vulnerability in the environment they are supposed to feel most safe. Strategies should be put into place that look at providing relief and support to carers, plus a better vetting system through employment stages and regular progress checks while they are at work. These are just some of the ideas experts asked the Government to review but the Department of Health has said that it is still considering what to do. Meanwhile, behind closed doors, the abuse continues.