Caring for the carers

RadioScope Case Studies, BBC Radio 4, Tuesday, March 29th

Late last year, an entire week on Joe Duffy's Liveline radio programme was given over to carers. Call after heartbreaking call told stories of a very particular kind of desperation and loneliness as well as financial hardship.

The subject of carers was again aired last week on BBC Radio 4's Case Studies with a particular emphasis on people in the UK who care for family members with severe mental illness.

Jean Clayton is in her 70s and is the permanent and sole carer of her 40-year-old son who has schizophrenia. In the unmistakable accent of an Irish person who has lived in Britain for most of her life, she described the emotional and psychological strain brought on by her responsibility.

Her main concern was what would happen to her middle-aged son when she died. Another woman, Ellen Jones, watched as her husband began a four-year slide into progressively more acute schizophrenia until he committed suicide. "It's 11 years ago," she said, "but the pain is still as sharp."

Her response to her husband's death was to get involved in a project run by HAFAL, the principal organisation in Wales for people recovering from severe mental illness, and whose work emphasises the need to support carers.

The programme's presenter, Dr Raj Persaud, was shown round their resource centre in St Fagan's in Cardiff where service users access day activities and, perhaps equally as crucially, their carers also avail of a range of family support services.

A touching part in the programme was Persaud's interviews with service users who are aware that the time they spend at the centre gives their carers a little respite. According to Ellen Jones, these carer-managed centres are able to offer the sort of practical and emotional support that other carers, who often feel isolated and depressed, require.

Mental illness presents a particular challenge because, as Imelda Redmond, chief executive of Carers UK, said, people "seem to forget that people with mental health problems come from families" so carers can find themselves excluded from information about the nature and, indeed, treatment of the illness.

Redmond talked of new research which showed high levels of psychological distress among carers, and explained how the new Carers (Equal Opportunities) Act, which came into force on April 1st in England and will apply from April 18th in Wales, will benefit UK carers.

The Act means that local authorities have to inform carers of their right to an assessment and should, according to Persaud, also help carers have a life outside caring. Some features of the Act include new rights to work and education for carers and an integrated approach across all council services.

It is designed so that, for example, a person living in a one- bedroomed flat who finds themselves having to care for a relative will immediately come to the attention of the council's housing division so that their housing needs can be addressed before a crisis develops.

A new booklet, Balancing Life and Caring, which tells UK carers about their new rights is also being launched to coincide with the Act, something that will, undoubtedly, be of interest to Irish carers.