A Question of Choice — Ireland Service Users’ Experience of Medication and Treatment
John Farrelly, Counselling and Information Manager for Schizophrenia Ireland, Coordinator of the Question of Choice-Ireland Survey, Schizophrenia Ireland
Schizophrenia Ireland (SI) devised this survey in response to the everyday dilemmas of people who contact our organisation. In the two years 1999/2000 SI received over 4,500 enquiries from every part of Ireland. An analysis of these enquiries indicated that information around treatment and medication options occurred in over 60% of contacts. The survey examines the area of treatment and medication. Information elicited will help to establish services and practices which ensure that choices and high quality information are available to service users and their caring relatives in every part of the country. The survey was targeted at people with enduring mental illness who had experience of mental health services. Approximately 1600 questionnaires were distributed throughout the country with a freepost envelope attached to each questionnaire. Six hundred were distributed through Schizophrenia Ireland regional offices, health services and social/vocational services. One thousand questionnaires were distributed through our quarterly magazine. There was a three-month distribution and response period. In addition a total of six focus groups in Galway, Cork, Dublin, Longford and Kilkenny took place. A total of 471 people responded to this national survey. 39.7% were female and 59.4% were male. The diagnoses ranged from schizophrenia (52.5%) to personality disorder (1.3%). Other diagnosis given were schizoaffective disorder (8.2%), manic depression (8.9%), and depression (20.4%). One interesting finding from the demographic group was that of the group with a diagnosis of depression, 50% were receiving antipsychotic medication of one form or another.
Experiences of Medication
Over 70 different medicines for mental health problems were recorded in the survey. Atypical (newer) anti-psychotic medications were the most frequently prescribed (49.6%), followed by anti-depressants (41%) and typical (older) antipsychotics (38.8%).
| Types of Medicines | Numbers | Percent |
|---|---|---|
| Anti-Psychotic Atypical | 234 | (49.6%) |
| Anti-Psychotic Typical | 183 | (38.8%) |
| Anti-Depressants | 193 | (40.9%) |
| Lithium | 66 | (14.0%) |
| Anxiolytics | 67 | (14.2%) |
| Anti-Cholinergic | 66 | (14.0%) |
There were some worrying findings in relation to polypharmacy (i.e. the use of a number of medicines to treat people with more than one diagnosis, counteract the unwanted side effects of another drug, or enhance a specific therapeutic action). Our survey found that over 65% of respondents were on two or more medications, over 30% on three or more, and 13% were on four or more medications. Significantly, the trend toward polypharmacy did not differ between those on older or newer antipsychotic medications. It is worth noting that when respondents were asked which was the best medication they ever experienced, 39.2% of respondents who answered this question (n=421) felt that one of the newer atypical antipsychotic medications was the best. 20% favoured the older typical medication (the most popular typical medications were the various depot injections). 16.4% of respondents favoured anti depressants and finally 8.3% who responded felt lithium was the best medication they had ever had.
| Types of Medicines | Numbers | Percent |
|---|---|---|
| Anti-psychotic Atypical | 165 | 39.2% |
| Anti-psychotic Typical | 84 | 20.0% |
| Anti-Depressants | 69 | 16.4% |
| Lithium | 35 | 8.3% |
Conversely, we also asked which medicine was the worst that respondents had ever had. 68.1% of people who answered this question (n= 361) felt that the older typical antipsychotics of one form or another were the worst medication they had experienced. 11.6% mentioned the newer atypical antipsychotics while 6.9% opted for anti depressants. In terms of individual medications largactil (23%) and melleril (18.3%) were the medications most cited by respondents.
Information and the Doctor
Our survey asked a series of questions to elicit how much verbal and written information people received from their doctor (either Psychiatrist or G.P.) about their medication, side effects, and whether they were offered a choice of medication. The overall results in this section were not encouraging. A doctor had not spoken to 32% about their medication, 42% had not been given a written record of their medication. Perhaps the statistic that caused most concern was that 65.8% did not receive written information about possible side effects. 60% of our respondents were never offered a choice of medication for the treatment of their illness.
Experience of side effects
Side effects of anti-psychotic and anti-depressant medication are an area of on-going difficulty and concern. The side-effect profile of a medication is often cited as a reason why people are understandably reluctant to take a particular medication. 277 respondents experienced weight gain (58.8%), 261experienced loss of energy (55.4%), 210 respondents experienced inner restlessness (44.6%), while 169 experienced shaking and tremors (35.9%). Respondents were also asked how these side effects affected their daily lives. Overall, 35.9% felt their daily life was affected a lot, while 39.5% felt their life was not much affected, and 20.2% felt their life was not at all affected.
Complementary Treatments
The lack of availability of non-medical interventions is a source of on-going debate in Irish mental health care. A possible reason for ambivalence towards non-medical interventions is that there is no broad consensus as to their efficacy*. It would seem logical that the best way to establish efficacy is to ask the people who experience a particular treatment. We asked whether people had experienced a range of non–medical interventions and how helpful they found them. 287 (61%) respondents experienced some form of employment training/education. When this statistic was interrogated on geographical location, it was found that 82% of respondents in the ERHA had experienced employment training as compared to only 48% in the rest of the country. 262 (56%) respondents had experienced counselling. However, once again, we found that on a regional breakdown 67% of respondents in the ERHA had counselling as compared to only 48% in the rest of the country.
Peer Group Support was experienced by 240 (51%) of respondents. In the ERHA 55% of respondents experienced peer support as opposed to 50% in the rest of the country. 228 (51%) respondents experienced some form of creative therapy. However on further examination the trend between the ERHA and the rest of the country continued. 67% of respondents in the ERHA experienced creative therapy as opposed to 48% of respondents in the rest of the country. The vast majority of respondents found these non-medical therapies to be either very helpful or helpful. Our respondents did not experience Homeopathy/Herbal therapy as positively as other therapies. In a system that is driven primarily by a medical model of intervention, there is a significant lack of emphasis on a holistic and integrated approach to promoting recovery from mental illness. The survey asked respondents about a range of non-medical interventions and how helpful they found them. Some of the most common experienced interventions included Employment/Training 61%, Counselling/Psychotherapy 56%, Peer-Group Support 51% and Art/Music/Creative Therapy 48%. In each of these areas, an average of over 75% found the intervention either very helpful or helpful. On further interrogation of the results however, it became apparent that there is a significant disparity between the Eastern Regional Health Authority and the rest of the country regarding availability of complementary and alternative treatments.
On the basis of the overall survey results, Schizophrenia Ireland feels that a number of key areas need to be addressed. The issue of written information for service users about their treatment in a format and manner, which they can understand, is of critical importance. There is also an urgent need to address the area of client inclusion in their treatment. Relevant accessible therapies should be available as a matter of course for people experiencing mental distress, regardless of their geographical location. The issue of medication and its prescription warrants serious consideration, particularly in the areas of polypharmacy, standards and guidelines and independent review of a service user’s medication on an annual basis. The constituent health boards, prescribing psychiatrists and general practitioners, must address these issues.
Conclusions
Even from this initial interrogation of the data, there are a number of significant issues, which are raised and are worth consideration by all the stakeholders in our mental health service. This survey represents the views and experience of the most knowledgeable people in our mental health service, the recipients. Three main points have come out of this preliminary interrogation:
Firstly, written information on medications and treatment options should be made available to clients to facilitate informed decision-making.
Secondly, relevant accessible therapies should be available to people with mental health problems regardless of geographical location.
Thirdly, The question of polypharmacy needs to be opened up for discussion among clinicians and service users.
The prevailing message across the survey results and focus groups is the desire for inclusion. When included, informed and educated respondents tended to be happier and more in control of their lives.
Limitations of the Research
Who we asked: Service users of both statutory and voluntary services linked to Schizophrenia Ireland. This sample may be more informed than would be expected from a random sample.
How we asked: As in any survey, not everyone would have clearly understood all the questions or filled in every answer in a way consistent with everyone else.
How we categorised: Hundreds of different responses required categorising for meaningful use. Some of the detail of peoples’ responses will have been lost in this process.