The role of advocates is poorly understood, but they do prevent many older people dropping off the social care radar, reports Anita Pati
Being ignored is a common experience for older people. Complaints that their wishes are overlooked hint at a form of discrimination at play – and one that may lead to them falling out of the system.
Part of the solution is advocacy, but research suggests many older people have never heard of it – and many social care staff are unsure of what it entails.
Sarah Reilly has been a part-time housing advocate at Westminster Advocacy Service for Senior Residents for two years, after advocating for people with learning difficulties. She says: “It’s about nudging the system along. People fall out of the system and it’s about putting them back in.
“Older people are discriminated against. I see people not being listened to and not taken seriously. Older people and their contribution are undervalued in society.”
The service uses a multi-disciplinary team of voluntary and paid advocates, including an ethnic minority outreach worker, to support and represent vulnerable older people either at home or in regular community-based surgeries. It offers skills in housing law, dementia and mental health advocacy.
At present, Reilly has 10 active cases, mainly women, aged 60 to 95. Housing is the single biggest issue for clients.
She says: “Housing needs change when people get older. They may need assistance, move into sheltered accommodation, or need adaptations to continue living in their homes.” Clients may also have problems with housing benefit, arrears, repairs or disputes with neighbours.
Despite demand, Reilly’s funding for the housing part of her role was cut in June – she now officially works as a mental health advocate while continuing to issue housing advice. “The two overlap – we have a lot of clients with mental health needs who also have housing problems.”
The service’s funding issues will be familiar to many who work in the voluntary sector. Reilly says: “It’s difficult to get the funding to continue a project. The grant bodies want to give money for new ideas and projects but don’t want to fund core costs or projects to continue.”
Most of the service’s clients are on benefits or are disadvantaged. But those older people in Westminster who are either well-off or privileged can also prove vulnerable.
One of Reilly’s clients is in her nineties and was a GP in her professional life. She had referred herself after her landlord had sought possession of her flat. Another, also in his nineties, had been a psychologist and wrote a book when he was 85. His landlord had raised service charges by 700 per cent and, being partially sighted, he needed help with correspondence.
Last month, a mapping exercise by the Older People’s Advocacy Alliance UK found that advocacy services for older people were patchy in England. Of 136 age-specific projects, Age Concern ran 57 with London well-resourced but others not so.
The report found that service users and other professionals had a lack of understanding – which sometimes spilled into suspicion – about the role. There was also a misconception that advocacy is advice and information rather than actions taken to represent the client’s own wishes.
Contrary to the findings that many older people are unaware of advocacy, two-thirds of the Westminster service’s clients self-refer. Reilly believes the level of initiative shown by clients is because the project promotes itself, particularly among the borough’s ethnic minorities, at lunch clubs and community groups.
While the alliance’s report found that London and the North West were well served, there were few such services in the North East, which was least represented.
In Gateshead, Julie McElpine of the local branch of the Alzheimer’s Society is the only advocate for people with dementia in a borough where the charity estimates there are 2,200 people with the condition.
McElpine has worked as a full-time advocate at the society for six years, before which she volunteered for the sitting service.
She has a “comfortable maximum” of 20 clients at any one time.
“People with dementia are often overlooked and not listened to,” she says. “They need someone to talk to in a language they can understand that does not use professional or medical terms, someone to communicate with them at their own pace.”
McElpine often encounters suspicion from social workers and family members when advocating for a person with dementia.
Most referrals in Gateshead come from social workers. McElpine says her presence can often “help staff reflect on their own role. But often they can be suspicious of the advocate and feel threatened by us – they see us as troublemakers,” she says.
“I would challenge the perception that advocates should only get involved when there’s trouble. They are there to represent people’s views all the time.”
McElpine agrees with the alliance’s findings that many people, especially family members, do not understand the role of an advocate. But as the only advocacy worker in the office and with a full caseload, she is not in a position to go out and promote the service or to pick up extra cases.
She regularly deals with family conflict where members become upset. A typical situation is where one partner has dementia but does not want to be moved to a care home while the other can no longer cope as the carer.
“It’s an awful situation,” she says. “Because on a personal basis you can see it from both points of view but my role is to represent the person with dementia while acknowledging the carer’s stress levels.”
Her work with people with dementia can be challenging and time consuming. “It can take two-and-half hours to work with a client. You do have to keep repeating yourself and you have to give them information in a way that they retain it long enough.”
Advocacy, for McElpine, affords job satisfaction despite her efforts often being unacknowledged: “It’s good knowing that you have given a voice to people with dementia. It does make you feel like you’ve made a difference but you don’t get much feedback from the client because they don’t really know what you’ve done.
“You can put in an awful lot of work and the client isn’t always aware of that. But you still know that you’ve done your best.”
‘My life was made hell’
“They gave me a walk-in shower when I was saying, ‘no, I hate showers’. When I got back home, my bath was gone.”
But nobody listened to Mary Rosetti* until she found an advocate. The disabled pensioner with curvature of the spine battled for four years to have her kitchen and bathroom reinstated after her council botched the assessment.
Rosetti had moved out of her flat for what she expected was three months but which dragged on for 15. In the meantime, the council’s contracted housing provider used the wrong specifications to adapt her flat.
“They made modifications for a wheelchair person. I’m not in a wheelchair; the flat is on the first floor – how would I get there?”
The council also fitted a stairlift, although she told them this was not part of her care assessment. “I got back and I found this monstrosity. I’ve been fighting ever since,” she says.
Despite her assertive nature and strong grasp of the facts, she was ignored. It was only after her local advocacy service pursued the complaint that she was taken seriously. But not before the experience of being ignored had caused damage.
“They’ve ruined my life,” she says, “but I don’t want to forget – I’m very angry about it. Four years out of my life have been wasted, I’ve been under terrible stress – it has been hell. If it wasn’t for the advocacy service, I don’t know what I’d have done. I’ve been at the end of my tether”.
*Not her real name