Family advocacy and the role of carers

On this plate (6 sections)

Behind most stories of mental health reform are relatives who provided care, often without training or recognition. This page covers how families organized, using England's relatives' groups as the example, what the law gives carers in England in outline, what research says about involving families in treatment, and where family and service-user voices have clashed. Laws differ by country and change, so the law sections describe England as of the dates given.

How relatives began to organize

Families were often isolated. The charity now called Rethink Mental Illness says it began more than 50 years ago with a small group of families caring for relatives with schizophrenia who felt alone and struggled to find help. Archive records describe an earlier thread. Dorothy Silberston, whose daughter had been diagnosed with schizophrenia and hospitalized in 1961, convened the first meeting of the Relatives of Mentally Ill Patients in Cambridge in 1965 and served as its secretary until 1972. The group aimed to learn about mental illness, support each other and campaign for improvements in health services.

A newspaper piece set things moving nationally. In May 1970 a journalist's article, "A Case of Schizophrenia," appeared in The Times. The archive describes it as describing the difficulties carers faced and the problems caused by hospital closures and inadequate community services, and notes that about 400 people contacted the author. The National Schizophrenia Fellowship was registered as a charity in 1972 as a national organization for people with experience of schizophrenia and their families, carers and dependants. The archive page itself calls the piece both an article and an open letter, so the editors describe it only as a newspaper piece.

Why families took on more

The 1970 article is tied by the archive directly to hospital closures. That fits a wider pattern. A 2021 history of the American Community Mental Health Act argues that when community services fell short, care often fell to families, friends and associates. In other words, family advocacy grew partly out of deinstitutionalization, with relatives asking for the services that policy had promised.

Families also had to contend with blame. A 2022 review notes that from the 1950s some family therapists hypothesized that disturbed family interaction preceded schizophrenia. The review says these theories did not lead to effective treatment and "often led to stigmatization of the parents as being responsible for the illness."

Carers' rights in law, in outline (England)

The Carers (Recognition and Services) Act 1995, dated June 28, 1995 and fully in force from April 1, 1996, is an early landmark for England and Wales. Under its first section, a carer who provides or intends to provide a substantial amount of regular care could ask the local authority to assess their ability to provide and keep providing that care, and the council had to take the result into account when deciding what services the person needing care should receive. The right did not cover people caring under a contract or as voluntary organization workers.

The Care Act 2014 moved further. Under section 10, where it appears to a council that a carer may have needs for support, now or in future, the council must assess those needs, whatever its view of the needs or the finances of the carer or the person cared for. The assessment covers whether the carer is able and willing to keep providing care and what outcomes they want. These pages describe the statutes only. For a person's own situation, the local council's adult social care team or a qualified adviser can say what applies, and a guide to asking for help appears in How do I request an advocate?

Involving families in treatment

Alongside advocacy, research produced a practical model. A 2022 review reports that since about 1980, several psychoeducational family programs have been evaluated against standard psychiatric care, and that across studies family intervention reduced relapse and hospital admission with low to moderate effect sizes. It reports that NICE and other guidelines say family intervention should be offered to families of people with psychosis who live with or are in close contact with the person, as part of care, and that it should include the person, last between three months and a year, and include education, communication and problem-solving.

The same review is frank about gaps. It says family involvement is under-implemented in industrialized Western countries, that "family therapy" is not clearly defined, and that guideline evidence comes from trials in which skilled, motivated clinicians treated selected patients. Whether such an approach suits a particular family is a question for the person's clinician.

Where families and service users disagree

Family and service-user movements share concerns but have not always aligned. A 1990 history of the ex-patients' movement, written from that side, criticizes a large organization made up mainly of relatives for embracing the medical model and promoting wider involuntary commitment, and says its basic principle is that people must speak for themselves. The history of that movement appears in The consumer/survivor movement, and one of its main modern forms is described in What is peer support?

The editors could open only the service-user side of this dispute in detail. Family organizations would likely describe their positions differently, and the sources used here do not record their reply. What the sources do show is that care often fell to relatives when community services were thin, and that service-user groups placed self-determination at the center of their demands. Dates for these developments appear on the timeline.

The short version

Relatives began organizing in England in the 1960s and 1970s, often in response to closing hospitals and thin community services, and carers now have statutory assessment rights there. Research supports offering families structured information and skills as part of treatment, although services often fall short. Disagreements between family and service-user groups, especially over coercion, are part of the history rather than a footnote to it.