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".

A survivor who estimated that they had had at least 150 E.C.T. treatments. They reported short-term memory loss, especially for the first 6-7 days after treatment, but that this improves over time. They wrote that "I think it's a small obstacle, compared with not having my sanity . . . If they banned E.C.T. I'd be terrified for the rest of my life."

A son whose mother had had five or six E.C.T. treatments about ten years before while in her eighties for post-influenzal depression, and then again after two and four years. He said that, after each course of treatment, she was "right as rain". His mother was now in good health, very sprightly for her age and with a good memory.

A survivor who had E.C.T. nine years before after a nervous breakdown. This had consisted of only one treatment, due to her husband stopping further treatment, as she had had a fit while going for the second. She now had permanent epilepsy, even though there were no family history of this. She believed that the epilepsy was caused by the E.C.T.

A survivor who had had course of seven E.C.T. treatments. She complained of having vivid and alarming dreams since E.C.T., a poor memory, difficulty in thinking, and problems with both sleeping and cooking.

4.4 The E.C.T. Workshop.

The workshop was held on Wednesday 22 October, 1997, at the Banqueting Suite at Buile Hill Park in Salford. This is a central venue often used for meetings of mental health survivors, which is well away from any hospitals and mental health facilities.

A full lunch was provided at the workshop. Travel expenses reimbursed to all those who wished to claim. Funding for the event was shared between the Mental Health Services of Salford N.H.S. Trust, Salford C.H.C. and Survivors in Salford. Information stalls about Salford C.H.C. and E.C.T. Anonymous were also on show throughout the day.

The workshop attracted 33 participants. It was jointly chaired by Ken Stokes, Vice-Chairperson of Salford Community Health Council and a member of the Project Team, and by Pat Garrett, the Chair of Survivors in Salford. The morning session was for users, survivors, relatives and carers only. This was to allow them to express their views freely and without any fear or pressure of doing this with health professionals present.

4.4.1 The E.C.T. Workshop - Morning Session.

Ken and Pat welcomed everyone to the event, explained the role of both organisations and the purpose of the event, and stressed the need for everyone to listen to each others' views and respect each other's confidentiality.

Chris Dabbs, the Chief Officer of Salford C.H.C., then gave a brief presentation on the aims and objectives of the Project and the issues that had been highlighted to date. He was followed by Pat Butterfield and Andrew Bithell from E.C.T. Anonymous, a national support and pressure group for all E.C.T. survivors and their helpers. They gave their own views on E.C.T. and its use in the United Kingdom. The audience then asked a range of questions about E.C.T. and the Project.

Four discussion groups were then formed. Facilitation and the taking of notes were undertaken by a Member and officers of the C.H.C., members of Survivors in Salford and members of E.C.T. Anonymous. Each group was given a "prompt sheet" - a list of the issues thrown up by the Project Team's work to date - to help and inform their discussions.

Each group was asked to identify three issues that they wished to highlight to the representatives of the Mental Health Services of Salford N.H.S. Trust during the afternoon session. These were:

Change the law to give all patients a right to choose or refuse E.C.T.
All patients should have access to an advocate when offered E.C.T. and during a course of E.C.T.

All alternatives, especially talking treatments, should be offered before E.C.T. is considered.

Better long-term monitoring of patients after E.C.T. and long-term research into its effectiveness and side effects.

Concerns about E.C.T. particularly being given to older people and women - was there discrimination involved?

Health professionals to listen to patients and survivors more, both as individuals and as groups.

Better and more information for patients and relatives about E.C.T., with the maximum possible time being given to consider it before making a decision about whether to have E.C.T. This information should include views from psychiatrists and survivors, giving views both supporting and opposing E.C.T.

Greater distinction between physical and mental illness - some people reported being given E.C.T. for conditions that were physical and not mental.

To use only the most recent, up-to-date equipment for E.C.T., with this being tested and maintained on a frequent and regular basis.<

A vegetarian lunch was served. During the lunch interval, survivors' poetry was performed by Survivors' Poetry Manchester,

4.4.2 The E.C.T. Workshop - Afternoon Session.

Dr. Steve Colgan and Ms. Avril Harding from the Mental Health Services of Salford N.H.S. Trust arrived at the start of the afternoon session. Chris Dabbs from the C.H.C. then presented the main issues highlighted by the discussion groups.

The question and answer session elicited the following responses from Dr. Colgan and Ms. Harding:

Most patients who are given E.C.T. without their consent are actually not able to give or withhold their consent.

There is a tension between seeking an absolute right to refuse E.C.T. and situations where the patient's judgement is impaired and they are suicidal.

The debate on the right to refuse E.C.T. needs wider moral and ethical discussion of the competing views.

Many patients at Meadowbrook were not aware of the independent advocacy service provided there by the Salford Mental Health Services Citizen's Advice Bureau. This service is not available to patients in the Elderly Service.

The main general risk with E.C.T. is that associated with repeated general anaesthesia.

E.C.T. is more commonly used in older people as they tend to respond well to E.C.T. and find drugs more noxious than younger people.

There is a need to listen more to and take more account of the views of patients.

Patients and carers should have as much information as they want about E.C.T. The Trust was developing a new leaflet on E.C.T.

The very high concurrence rate between the views of responsible medical officers (R.M.O.) and second opinion appointed doctors (S.O.A.D.) was because they were trained to the same standard.

The Trust recognises that there are still problems. It wants to continue to discuss the local service with survivors and carers in order to help make improvements.

The Trust was currently commissioning new E.C.T. equipment for the new E.C.T. Suite at Meadowbrook. Older E.C.T. were still being used, but were not considered dangerous and were maintained regularly and had not broken down since the new E.C.T. Suite had opened.

The period of time given to decide whether to give or withhold consent varies according to circumstances, but is as long as safe and possible.

It is recognised that one side effect of E.C.T. can be memory loss (at least in the short term). Long-term memory loss is rare and difficult to determine.

Compared to other alternative treatments, E.C.T. is better researched.

E.C.T. practice has improved over time, including in regard to machinery, anaesthetics, privacy and dignity.