Schizophrenia and the burden for carers

Mental Health Nursing,  Jul/Aug 2001  

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News Update

The huge burden carried by those caring for people with severe mental illness, especially schizophrenia, was highlighted during National Carers' Week.

New research commissioned by the National Schizophrenia Fellowship and AstraZeneca, last month, shows carers are struggling to cope with little guidance or training. Some report real difficulties in getting treatment. The insights of carers themselves might also be overlooked. It also raises questions about carers and service users who seek a change of medication to the newer 'atypical' anti-psychotics. These are said to have fewer side effects and thus assist in sticking to medication regimes.

Carried out by Fast Forward research, 31 carers (24 women, seven men) took part in six discussion groups. Most were looking after a son or daughter with schizophrenia.

Standard VI of the National Service Framework for Mental Health specifies support for carers. But this latest assessment of the impact on carers includes experiences of guilt, fear and anxiety Paul Farmer, director of public affairs for the NSF says some participants described their experience as `worse than a bereavement'.

"They are themselves at risk of a relapse. The effectiveness of family intervention work depends on better commitment from the government for better carer support services."

The post election agenda, he said, would include the proposed mental health bill and assessment of atypical antipsychotics by the National Institute of Clinical Excellence.

For Mary and Joe Cronk, from the Isle of Wight, the mental health problems of their daughter Maggie, now aged 32, have been a long struggle to make sense of treatment patterns.

Mary described Maggie after her first mental health episode: "She was at Portsmouth doing an arts foundation course and maybe I wasn't paying as much attention as I might have been.

"In her second year she had her first acute breakdown. I do not think we will ever forget taking a 4 am phone call and getting the ferry over to bring her home. She spent her 21st birthday in seclusion - a euphemism for a padded cell."

The Cronks say they were patronised and put down by local psychiatric services. They only felt an improvement after further episodes when they insisted on a referral to the Maudsley in London.

In recent years they have `noticed a major improvement' after Maggie was put on atypical Seroquel although she still has problems staying well.'

"When she is well she is very well," says Mary. "Her compliance is still a problem but then it always was."

The National Institute for Clinical Excellence is currently in the middle stage of assessing the 'atypical' antipsychotic and expected completion would be towards the end of the year. NICE, as part of the assessment process invites stakeholders manufacturers and key professional and patients organisations - to submit evidence. The manufacturers' evidence is reviewed by an independent and external group who submit a report. The product is assessed for both clinical value and cost effectiveness.

That report along with submissions from professional and patient groups goes to an appraisal committee to inform their decision. A provisional determination is fed back to stakeholders and comments can be reflected in the final appraisal. This itself is subject to appeal although this could delay a drug's final implementation.

Copyright Community Psychiatric Nurses Association Jul/Aug 2001
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