2.8.4 Survivors' Views.

There has been relatively little work done on establishing survivors' views of E.C.T. It seems clear, however, that there is a polarisation of views among people who have had E.C.T. about how helpful it has been for them.

One study to seek the views of survivors involved a series of interviews with 166 people who had E.C.T. in the 1970s. It should, however, be noted that this was done by psychiatrists in a psychiatric hospital. The authors got the impression that those with strong views expressed them, but that it was less certain whether others were more distressed by E.C.T. than they were prepared to say. They concluded that most survivors "did not find the treatment unduly upsetting or frightening, nor was it a painful or unpleasant experience. Most felt it helped them and hardly any felt it had made them worse." (Freeman and Kendell, 1980: 16). Many complained, however, about permanent memory loss, especially around the time of treatment.

A national survey of survivors in 1995 found that 13.6% described their experience as "very helpful", 16.5% "helpful", 13.6% said it had made "no difference", 16.5% "not helpful" and 35.1% "damaging". 60.9% of women and 46.4% of men described E.C.T. as"damaging or "not helpful" (163). This may be linked to the fact that women were less likely to receive an explanation of the treatment and more likely to be treated compulsorily.

The survey also concluded that survivors who had had E.C.T. voluntarily found it less damaging and more helpful than those receiving it compulsorily. 62% of those threatened with E.C.T. found it "damaging", while this was true for 27.3% of those for whom E.C.T. was not used as a threat. Only 3.6% of those threatened with E.C.T. said it was "very helpful" compared to 17.7% of those who had not been threatened.

Of the women who did not consent, 50% described their treatment as "damaging" and only 8.6% as 'very helpful'. By contrast, of those women who consented, 33.7% found it "damaging" and 16.5% 'very helpful'. There was an even greater contrast amongst men. While 20% of the total who had had E.C.T. described it as "very helpful", this figure was only 2.3% for those treated compulsorily. 21.2% of the men who had E.C.T. voluntarily described it as "damaging", but this figure rose to 51.2% for those treated against their will. (163)

Likewise, whether an explanation is given before E.C.T. appears to affect survivors' perception of the treatment's effectiveness. 30.4% of those who got an explanation described E.C.T. as "very helpful" compared to only 8.5% of those who did not. Those getting an explanation were also less likely to describe E.C.T. as "damaging": 11.6% compared to 44.8% who did not get an explanation. (163)

Diagnosis also appears to affect survivors' views on E.C.T. In the survey, half of those diagnosed as having manic depression, 35.2% diagnosed with schizophrenia and 24.6% diagnosed with depression described their experience of E.C.T. as "damaging". (163)

One major study found that 43% of survivors said E.C.T. had been helpful, and 37% unhelpful (134). This contrasts with the view of the Royal College of Psychiatrists that "over 8 out of 10 of depressed patients who receive E.C.T. respond well" (Royal College of Psychiatrists, 1995b: 3).

4. Patients', Users and Survivors' Views in Salford.

4.1 Background.

The Project Team tried several different approaches to obtaining the views of survivors of E.C.T. from the start of the Project. These included press releases, articles in local press and media (including voluntary sector and mental health publications), and direct letters and mailings to mental health user groups and carers' organisations. These yielded, however, only two people, both of whom were coopted onto the Project Team.

The Project Team felt it vital that every effort was made to obtain the views of people who had had E.C.T. in Salford. It therefore met with Survivors in Salford, the only city-wide organisation of mental health service users to discuss possible ways forward. From this discussion, it was agreed to hold a workshop and to invite survivors, users and carers to come to give their views. This was a format that had been used successfully by Survivors in Salford before on other mental health issues.

4.2 Planning and Publicity.

The workshop was promoted and publicised through the press and media (including articles in local newspapers and interviews on B.B.C. local radio), and through the distribution of 1 500 flyers targeted at survivors through user groups, carers' groups, community psychiatric nurses, health centres, social workers, support workers, drop-ins and libraries. The mailing list for Marooned?, the mental health magazine for Salford, and the Salford Council for Voluntary Service Directory of Local Information were used to assist with distribution. The flyers included information about lunch and the reimbursement of travel expenses.

4.3 Letters and Telephone Calls.

As well as participants on the day, the publicity for the workshop also attracted a range of letters and telephone calls from E.C.T. survivors to Salford Community Health Council (C.H.C.). These included:

A survivor who had had two courses of E.C.T. in 1997 for manic depression. They considered that it had saved their life, but was worried about the side effects.

A survivor who had had several courses of E.C.T. at Prestwich Hospital over 16 years, the first after being diagnosed schizophrenic. After the first courses of treatment, it had taken two years to recover. Later, when the person decided not to have E.C.T., it took them eight years to reach the same level. "I think you recover quicker with E.C.T. and it cuts the amount of time you are suffering".

A survivor who had recently had E.C.T. at Meadowbrook, reportedly for continuous earache, and who withdrew their consent after a small number of treatments. They described the experience as "awful" and as "a quick conveyor belt process". "Came out of Meadowbrook worse than when I went in. Just a handful of anti-depressants and hope these kept me quiet. Sorry, against E.C.T."

A survivor who had had over 100 E.C.T. treatments at both Prestwich Hospital and Meadowbrook. They reported that, for them, three or four "bouts" helped and that the treatment was followed by a headache, but no memory loss. They said that E.C.T. "lifts a cloud from you and lets the sunlight through".