In the early hours of September 8th 1994 I was led up the winding stairs in the tower of a 124 year old “lunatic” asylum. At the time I believed the NHS had left some years previously. I thought the collapse of the Berlin Wall was an event planned from within the Soviet Union and that what was now happening in this abandoned asylum was part of that. I believed that Warsaw Pact psychiatrists had learnt how to remove the personalities of people so that only the most basic elements of their minds were still there whereupon they could then be reprogrammed for release into the community. This would enable the Soviet Masterplan of subjugating the West to proceed and a communist state to rule. All that could stop that from happening was an elite Special Forces unit of which I was a member, military High Command, and the Security Service.
So began my decade-long journey to recovery from paranoid schizophrenia, the reality being that I was in fact arriving in a National Health Service psychiatric hospital, and subject to section 2 of the Mental Health Act 1983, the so-called Criminal Lunatic Act of 1800 having been repealed in 1981.
Eleven years later I found myself at Claridge’s for lunch, where I was presented with the Lilly Moving Life Forward Award by my MP for surmounting the illness and for my work as an expert patient. Through this work I learnt of the NICE Schizophrenia Guideline and plans to review the guideline published in 2002. I applied and was invited to join the Guideline Development Group.
Having recovered I discerned 5 reasons why paranoid schizophrenia can be hard to beat. Commonly when you are experiencing the illness you do not believe you are ill. But there is a bit more to it. You may be released from hospital not really having surmounted the illness because the stigma of the condition and unpleasant side effects of the drug you are expected to take prevent you from accepting you have been ill. You may have “comorbid substance abuse” of alcohol or perhaps cannabis and these present further barriers to recovery. Some patients quite enjoy their illness. Even for those who don’t the treatment is sometimes worse than the illness.
Until 2002 there had been a further barrier to recovery: there was no guideline for the health professionals to follow. The guideline’s introduction demystified the condition greatly and perhaps its greatest value is that it puts patients with the condition on a par with patients suffering non-psychiatric conditions. It shows that schizophrenia is a treatable and not just manageable condition from which the patient can recover. For some this could be the difference that enables their recovery.
It is pleasing to look back at good aspects of my treatment during the decade-long journey to recovery and see that these are now formally laid down as good practice. In November 1994 I was sat on a bed in a state of great unhappiness and a nurse spotted me and came and sat next to me and told me she had seen many before like me but that they were now well and back at home and working again. Though it did not exist at that stage she was following recommendation 220.127.116.11 about hope and optimism.
For me personally perhaps the most valuable aspect of the guideline is the open, realistic and hopeful approach to the problem of side effects. In my case it took ten years before I found a drug I was prepared to take because I found its side effects tolerable. I might have known this 5 years earlier if the recommendation that only one antipsychotic normally be prescribed at a time had existed. I might have reached my recovery journey destination years earlier and avoided literally years on the run from the psychiatric services if the recommendation that initial prescriptions of drugs be explained to be explicit trials had existed. Instead, in the first instance I was simply given a pill of some drug (it happened to be Chlorpromazine but even this was not explained to me) and expected to take it and get on with it. At no time was it explained to me that I might get side effects or even what a side effect was. Nor was it explained to me that there was a choice of drugs and that if one did not suit another could be found.
I was happy to see that the new guideline revealed no statistically significant difference in cost effectiveness between any antipsychotic as this gives the clinician a free hand, with the patient where possible, in the choice of drug. A good friend of mine illustrates the value in dropping the artificial distinction between so-called first and second generation antipsychotics this has also enabled. There is a certain injection of a “first generation” antipsychotic available and to explain how badly I react to it (and others) I told somebody I would struggle to voluntarily have that injection if they offered me £50,000 to have one. My friend was changed from that drug to a “second generation” antipsychotic and, finding it did not suit him, happily went back to the old drug which caused me such terror, and which he was first put on 20 years ago.
It is most pleasing to see the prominence of non drug treatments, particularly arts therapies, in the new guideline. From my own experience I would recommend that patients be encouraged to write down their experiences as the guideline also recommends, for placement in their notes.
All illnesses of a family member affect the entire family but schizophrenia can be particularly distressing as it seems the family member, or indeed friend, has been taken away from them and where the Mental Health Act is concerned they very often are. The illness can lead to a complete breakdown in the relationship of the patient with their family. The guideline is a resource which can give the family confidence that the health professionals caring for their loved ones who have had to do this know what they are doing and can bridge that chasm. They need only look at www.nice.org.uk/nicemedia/pdf/CG082PublicInfo.pdf and www.nice.org.uk/Guidance/CG82 to see this is the case.
The all in cost of schizophrenia to the nation is calculated to be £tens of billions, much due to the patient not being at work and therefore paying no taxes. Whilst this country pays a pitifully small amount to surmount the stigma and prejudice which contribute to this large figure the guideline is a beacon of hope to patients, their families and indeed those who treat them and as a patient I am very happy to have played a part in the development of this new, updated, NICE Schizophrenia Guideline.
Clive H. Travis April 2009