The lion's cage

by Mike Parker and Ruth Northway

Openmind 116, Jul/Aug 2002

ForUs, a mental health user group, has successfully challenged the traditional power base of service providers within their local borough in Wales. In 1998, concerned about antipsychotics ... the group distributed a flyer setting out service users' rights in relation to medication. They also conducted a pilot study into users' experiences of medication.

Although local service providers were receptive to the pilot study, it became apparent that it was seen as lacking 'academic rigour' and in danger of being ignored. ForUs then approached the School of Care Sciences in the University of Glamorgan to ask for assistance and subsequently commissioned them to carry out a further study....

The subsequent research study maintained the objectives of the original group but broadened its remit to look at the prescription patterns of antidepressant as well as antipsychotic medication.

Some other changes were also necessary to ensure that the research would not be viewed as being biased. For example, information was sought concerning the positive effects of medication as well as the negative effects. Also the study explored who initially prescribed medication regimes and included more explicit questioning about the availability of alternative and complementary therapies....

The agreed aims of the research were to:

• determine the views of users of out-patient facilities, day hospitals and day centres regarding the medication and treatments which they receive
• undertake research which is informed at all stages by the perspective of mental health service users
• inform local policy and practice.

Information was gathered from participants by the use of a structured interview. Student nurses, who had been provided with appropriate training and support, conducted the interviews. Ethical considerations were seen as being very important. All of the questionnaire results were confidential and participants involved in the study were given every opportunity to withdraw at any stage if they wished....

178 people were approached, of which 37 refused letters of invitation. A further 42 people accepted letters but did not come forward for interview. However, a sample size of 99 people was achieved and interesting results from the study were obtained. Nonetheless, one of the most disappointing features of the whole study for the ForUs group was the number of service users who did not want to take part in user-led research.

Whilst this was a small scale study, and some limitations have been noted above, its findings highlighted both positive areas of service provision and also areas for further development. In particular, the need for appropriate and timely information to be given to service users about their medication (including information on side effects) was identified. Clearly current procedures could be improved.

Many opportunities have been taken to ensure that the findings are communicated to as many people as possible. A project report has been written and a launch event for this publication was held earlier in the year. Service users, service providers and other interested parties were invited. A presentation has also been given at the Mind Cymru conference and copies of the summary report widely distributed.

Most importantly, the project report has been discussed by the ForUs committee and their recommendations for service development identified. These have been presented to local service providers and have received favourable responses. It would seem, therefore, that the aims of the project have been achieved.

If user involvement is ever going to be more than gestures, and if balances of power are ever going to be addressed, services users must engage with the institutions of service providers, with the same tools and arguments they employ. Research is one way of doing this....