VOL: 96, ISSUE: 49, PAGE NO: 38
Tony Gillam, BA, RMN, DipCPN, is a community psychiatric nurse, Kidderminster General Hospital, WorcestershireA survey of the impact of 'schizophrenia' and its subsequent management on people's lives has found that the side-effects of older style treatments are often considered worse than the symptoms of the illness itself by the people affected.
A survey of the impact of 'schizophrenia' and its subsequent management on people's lives has found that the side-effects of older style treatments are often considered worse than the symptoms of the illness itself by the people affected.
A pan-European report on the experiences of people with a diagnosis of schizophrenia, Are People with Schizophrenia Getting the Best Treatment? The Patients' Perspective, was launched at the European parliament earlier this year. The survey, conducted by market research consultancy Martin Hamblin, gathered the views of 450 people diagnosed with psychotic illnesses across nine European countries (the UK, France, Germany, Italy, The Netherlands, Finland, Belgium and Sweden), who had switched from a 'typical' to an 'atypical' antipsychotic. Forty-five of the respondents came from the UK.
When asked to give reasons why they did not want to take their medication, more than half (53%) cited their experience of the side-effects of medication as being worse than the symptoms of their illness.
Nurses will be familiar with patients who talk about the troublesome 'symptoms' of medication. Nearly two-thirds (64%) of the survey's respondents cited side-effects such as violent and embarrassing shaking or spasms. Such extrapyramidal side-effects are more commonly associated with the older, so-called typical antipsychotic treatments than they are with atypical treatments (such as olanzapine, risperidone and quetiapine).
The majority of UK patients with a diagnosis of schizophrenia are receiving the older, typical antipsychotics even though the majority of European psychiatrists surveyed believe that the atypical drugs are more effective and associated with fewer side-effects. Doctors in the UK would seem to be the least likely to prescribe atypicals.
Extrapyramidal side-effects, apart from their intrinsic unpleasantness, have been linked with non-compliance (Casey, 1996). Nearly 42% of the UK patients had experienced extrapyramidal side-effects on a 'typical' drug. The majority of these felt that the side-effects were a significant barrier to being able to lead an independent life, making it difficult to secure or keep a job, and making them feel uncomfortable in the company of others.
This was brought home to me when I went to administer a depot injection to a colleague's patient. This quietly spoken man, experiencing distressing and enduring psychosis, is unemployed and lives with his elderly father. Throughout our conversation he sat cross-legged, his foot kicking involuntarily. He jokingly drew attention to it, but added that it was a source of embarrassment when he was waiting in the doctor's surgery. Consequently he kept his visits to a minimum and rarely ventured out socially.
If changes in medication could really have an effect on access to primary care, employment prospects, independence and the social inclusion of people with psychotic illnesses, this would indeed be powerful medicine.
The Global Alliance of Mental Illness Advocacy Networks, or GAMIAN, as it is known, is a federation of patient groups and organisations operating in the field of mental health to promote the interests of people affected by mental illness.
Launching the survey, Vincenzo Costigliola, Belgian director of GAMIAN Europe, emphasised that it was not a scientific meeting, but 'a meeting to stress the rights of people with schizophrenia'. He called for an emphasis on patient priorities: 'reintegration into society and the right to live a normal life; consideration of social impact and stigmatisation; and an improvement in the availability, accessibility and quality of treatment'.
Anne Farmer, recently appointed professor of psychiatric nosology (the classification of diseases) at the Institute of Psychiatry, King's College, London, gave an overview which placed patients at the centre of care arrangements. She stressed the importance of psychosocial interventions (particularly family interventions) alongside medication.
Professor Farmer felt the time had come to move beyond the crude 'symptom control' of typical antipsychotics, where 'non-adherence rates are high due to poor symptom control and unacceptable side-effects. This contributes to relapse and increased hospitalisation'. However, she was careful to concede that even atypicals have some side-effects, notably the risk of weight gain, and that 'typical drugs are better in some cases'.
Two of my own patients have vividly illustrated this point recently. One decided to stop his depot injection but agreed to take an atypical. Perhaps he did not take the tablets. Perhaps he took them but they were less effective. Whatever the explanation, he became floridly ill and was admitted to hospital.
The other patient asked if he could stop the tablets and resume his depot injection. He felt he could not trust himself to remember to take his tablets and was beginning to experience symptoms again. Part of the debate about efficacy is not 'typical versus atypical' but 'oral versus injection'. I recently forgot to complete a course of antibiotics. If I, as a nurse, fail to take oral medication, I can hardly criticise my patients for non-compliance.
Also speaking at the launch, MEP John Bowis, former UK health minister, said he believed progress in drug therapy had made normal life in the community a real possibility.
'In spite of this,' he argued, 'a considerable proportion of people with schizophrenia are not benefiting from atypical therapies.'
Hopefully many patients, including those on 'typical' drugs, are living a normal life but Mr Bowis' point is that people are being denied the option of atypical medication.
Atypicals are not for everyone, but the worry is they are only offered to a minority of patients in the UK and this is no cause for national pride.
The survey's launch coincided with an announcement by the National Institute for Clinical Excellence that it was considering banning beta interferon, which multiple sclerosis patients believe helps their condition, from prescription on the NHS. There are obvious parallels with atypical antipsychotic medication.
Michael Howlett, director of the Zito Trust, has said: 'People with schizophrenia are being denied the most appropriate treatment options. They should no longer be subjected to the disabling side-effects of older treatments when better alternatives are available.'
Quite rightly the consumers of mental health care - patients, their families and carers - are becoming more vociferous and I was pleased to see they were represented at the launch.
Tim Newey spoke about his experience as a person with a psychotic illness. He described being offered an atypical treatment as 'an invisible rope thrown to me', having found the 'symptoms' of the typical drugs 'hopeless'.
But while Mr Newey felt that he had 'climbed the mountain and was now enjoying the view', other representatives of user and carer groups expressed frustration at not being involved in drug research from the outset and at the restricted availability of atypicals, despite the survey's findings.
The question 'Are people with a diagnosis of schizophrenia getting the best treatment?' is a crucial one. It is clear to me, as a mental health professional in the UK, that atypical treatments are not being provided on the same scale as in other European countries, despite the British government's drive for clinical governance and evidence-based practice.
Effective interventions in psychotic illnesses (which include both typical and atypical drugs, along with a range of psychosocial interventions) should be provided according to the patient's individual needs.
At the same time, evidence-based practice needs to be balanced with the preferences of patients, their families and carers.
- For a free copy of Are People with Schizophrenia Getting the Best Treatment? The Patients' Perspective, e-mail: firstname.lastname@example.org
GAMIAN Europe can be contacted by writing to Professor Paolo Morselli, Secretary-General, c/o IDEA, Via Statuto 8, 20121 Milan, Italy. e-mail: email@example.com