Updating NICE guidance on schizophrenia: a personal account
“Interesting, frustrating, exhilarating, educational and, at times, exhausting”. That's how Janey Antoniou describes her experience as a member of the NICE schizophrenia Guideline Development Group (GDG). Janey, who has been taking anti-psychotics for schizophrenia since 1987, was one of several ‘lay' volunteers who helped NICE develop its latest recommendations on the subject.
‘Looking back I became ill at university but I didn't get diagnosed properly until I was 30,‘ explains Janey, who continued working as a molecular biologist in an immunology department for a further11 years before various workplace changes made life too stressful.
So how did she get involved?
“I knew the NICE guideline was going to be updated two years ago - everyone was talking about it. I had already commented on a couple of scoping documents (NICE documents describing what areas the guidance would cover). Then the charity Rethink asked me to apply for a mental health service user position and helped me with my application. To my surprise, I was chosen to be one of the two service users on the group.”
NICE invited Janey along to a one-day orientation course for ‘lay' representatives (service users and carers) to explain how the GDG would work. There she met the other service user in her group who, coincidentally, was also an ex-scientist.
At the first GDG meeting Janey met the rest of the group - professionals drawn from psychiatry, psychology, nursing, pharmacy, general practice, the arts therapies and information technology.
During the next 18 months they all met for a day (sometimes 2 days) once a month to sort through the evidence on different forms of psychotherapy and trials of medication. It resulted in “a pile of paper 15cm high and many files on my PC“, she says.
Janey admits she found it quite frustrating that they were only going to update certain bits of the guideline, but agrees that if it had been any more complicated they would never have finished on time.
The result, ‘Core interventions in the treatment and management of schizophrenia in primary and secondary care (update)' was published in March. It updates NICE's first ever clinical guideline and NICE guidance on newer (atypical) antipsychotic drugs - NICE technology appraisal guidance 43 .
Among a range of recommendations, the latest guideline advises that people with schizophrenia should be offered arts-based therapies such as music, drama and art therapy, in addition to cognitive behavioural and family therapy (as previously recommended).
It also recommends that people should choose their medication in collaboration with their healthcare professional.
“As someone who has tried over 12 different anti-psychotics before finding one I could live with, it would have been helpful to be told about the side effects ahead of having to take them. It would have also been helpful to have been asked about my lifestyle and what side effects I would definitely like to avoid.”
Medications divide roughly into those which cause metabolic and those that cause movement side effects, so the GDG thought it would be good if people could be given a choice of a couple from each category. “Some people have said this may be difficult for psychiatrists because they are not used to working in this way,” she adds, “but most of the ones I know do this to a degree already.”
Janey describes working with the GDG as “a good experience” and something she would do again. “Everyone was friendly and I always felt people were listening to me.”
The schizophrenia guideline is available at: www.nice.org.uk/CG082
Issued: 29 April 2009
This page was last updated: 19 April 2010