Schoolboy `trapped by burden of care'

Court ruling sought over obligation to epileptic mother
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The Independent Online

There is little to distinguish 10-year-old Sean Benjamin from other boys of his age, except that he spends most of his time outside school nursing an epileptic mother.

Annabel Benjamin, 35, can black out and have a violent fit and Sean is often the only person on hand to help her.

Later this week, his case is expected to be heard in the High Court in an attempt to force Tower Hamlets council to provide assistance. Nicola McIntosh, a solicitor who specialises in community care cases, is seeking a judicial review on behalf of Sean and his mother in order to compel the local authority to assess their needs under the community care and children's legislation. Even if the assessment is carried out, it does not automatically mean help will be provided.

Ms Benjamin has been epileptic since Sean was born and has an average of three fits a day. A fit can leave her unconscious and sometimes she needs to be hospitalised.

She is virtually a prisoner in her own home. Apart from shopping and visits to the DSS and the council, she seldom ventures out, terrified that she will pass out in the street. "No one around here cares," she said. "I have blacked out in the courtyard of the flats and been ignored. Neighbours think I am a freak - I feel totally isolated.

"Sometimes I can sense a fit coming and am able to sit down and take deep breaths. If not, I lose control and find myself waking up in bed. I have bitten my tongue and sometimes soiled the bed. And when I ask Sean how I got there, he tells me he put me into bed."

Annabel, who has a second floor flat in a tower block , is convinced her condition is compounded by stress. For than a decade she has been fighting to be re-housed as she is unable to use the lifts and has fallen down the stairs several times.

Another worry is that the school Sean attends is half an hour's walk from the flat. "Fortunately someone takes Sean to school for me but he is often late because he is looking after me. He is very bright but is often distracted at school because he worries about me. It is not fair that a 10-year-old cannot enjoy his childhood because he feels obliged for me. I am proud of him but I feel so guilty."

To ease the burden, their solicitor aims to secure a ground floor flat with warden support. Ms McIntosh said: "I also hope the need for a sitting service for Annabel will be recognised so that Sean can pursue activities outside school."

The legal action is the second to be taken by carers to force a local authority to assess their needs. The first was in January when Ms McIntosh represented another 10-year-old boy who cares for his housebound mother who also suffers fits. Following the hearing an assessment was made. But Ms McIntosh said the case was likely to return to court because the recommendations were unsatisfactory.