REHABILITATION OF PROFOUNDLY DISABLED PEOPLE

REHABILITATION OF PROFOUNDLY DISABLED PEOPLE

1090 been tortured first. Notes and News MEDICAL QUACKBUSTERS "Do not foot yourselves about the benefits of vitamin F", wrote Prof John Garrow (St Ba...

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1090 been tortured first.

Notes and News MEDICAL QUACKBUSTERS "Do not foot yourselves about the benefits of vitamin F", wrote Prof John Garrow (St Bartholomew’s Hospital, London) to the Today newspaper. "It does not exist." But there, in the pages of the national newspaper, was an article describing the mythical vitamin as a "cancer beater". The vitamin F story is just one example of numerous attempts to seduce gullible people--some desperately ill and searching for lifesaving remedies, others just hoping to rediscover their lost youth-into buying untested and untestable (or even non-existent) treatments. The quacks are out in force, aided and abetted by uncritical journalists on the look-out for a good story. The Campaign Against Health Fraud,’ which was launched in London earlier this week, has been set up specifically to protect the public by drawing attention to such fraudulent practice. One of its main functions will be to give journalists access to an independent assessment of health claims. The campaign, formed by a group of doctors, scientists, lawyers, and journalists, aims to promote: good practice in the assessment and testing of both orthodox and alternative treatments; consumer protection by thorough testing of products and procedures and better regulation of practitioners; and better understanding by the public and the media that valid clinical trials are the best way of ensuring public protection. The campaign opposes charging patients for unproven procedures and the use and promotion of treatments that may be fraudulent, unnecessary, unduly dangerous, and needlessly expensive. It is also concerned that patients enticed by unproven "cures" may be wasting valuable time and the opportunity of receiving the best treatment. To illustrate this point Prof Michael Baum (King’s College Hospital, London) gave an account of two patients with breast cancer who decided to try alternative therapies (one a "cancer diet", the other homoeopathy) instead of the surgery he offered. A year later one of the women had a larger tumour and lymph node involvement, the other had an inoperable tumour. You can tell a quack by his unwillingness to expose his claims to a clinical trial, according to television presenter Nick Ross, who introduced the speakers. To offer sick people an illusion of cure that can never be fulfilled was, he said, a particularly offensive form of fraud. What Dr Petr Skrabanek (Trinity College, Dublin) found most objectionable about quackery was not the placebo it provided but the pseudoscientific "claptrap" to explain how it worked. "Quacks attempt to undermine faith in science by pretending there is a different physical world, different from the real world. Yet, at the same time, they crave recognition as scientific disciplines." Professor Garrow was amazed that the public was prepared to buy materials for which only vague claims had been made. That Korean red ginseng "develops health and lengthens life" was one of a number of untestable claims he had come across while wandering round a health food store. Barrister Diana Brahams suggested that people would be less easily cheated if they were better educated about such matters ... which brings us back to the journalists. THE DEATH PENALTY AND HUMAN RIGHTS

Amnesty International last week called on 100 governments to end "cold-blooded and premeditated killings" of citizens by the state. In its report When the State Kills2 the organisation records that the death penalty, which it sees as a violation of fundamental human rights, has been used in many countries either for blatantly political reasons or disproportioinately against the poor. 15 320 judicial executions have been reported from 90 countries in the past decade, but some estimates, says Amnesty International, put the number at over 40 000; in 20 countries, thousands of prisoners have been put to death after unfair trials, and some have 1. Campaign Against Health Fraud, PO Box CAHF, London WC1N 3XX. 2. When the State Kills. the death penalty v. human rights. Available (price £8.75 plus £1.75 packing and postage) from Amnesty International, British Section, 99-119

Rosebery Avenue, London EC1.

Some of those hanged, gassed, shot, or stoned to death by judicial order have been prisoners of conscience or mentally ill, according to the report, and some have waited 25 years between sentencing and execution. Amnesty International finds no evidence to support the commonly used argument that the death penalty is a valuable deterrent against crime. And it deplores the more deep-seated justification for execution-namely, retribution. Nearly half the countries of the world have abandoned capital punishment, but 63 are known to have carried out executions between 1983 and 1988. Not all executions have been for offences resulting in loss of life-in 38 countries prisoners have been executed for reasons such as adultery, prostitution, showing pornographic films, accepting bribes, "being at enmity with God", embezzlement, rape, robbery, and drug trafficking. The report cites examples of deliberate and cruel physical assault on prisoners condemned to death-a Thai construction worker who took nine minutes to suffocate to death during a hanging in Kuwait; Alpha Otis Stephens in the US state of Georgia, who struggled for breath for eight minutes after electrocution before being killed by a second shock; two prisoners in Nigeria who were executed slowly by successive volleys of bullets, starting with shots aimed at the ankles; and another US prisoner who took nine minutes to die after a lethal injection. Execution, the report says, also causes mental suffering that cannot be quantified: "its unique horror is that from the moment of sentence the prisoner is forced to contemplate being put to death at an appointed time." The report includes accounts of horrific practices around the world-over 1200 executions for political reasons in Iran in 1988, the prisoners being denied both representation by a lawyer and the right to appeal against sentence, political executions in Iraq, where bodies returned to relatives after payment of "execution fees" have borne the marks of torture (eg, fingernails extracted and eyes gouged out); 30 000 executions after unfair trials in China between 1983 and 1987 and 63 executions by shooting in the USSR (where official figures are secret) between 1985 and 1988. In South Africa, says the report, the vast majority of the 1250 prisoners executed in the past decade have been black. Racial discrimination features also among US executions. In 1988 blacks, who comprise 12% of the population, accounted for 40% of the 2182 prisoners on death row. In stark contrast to the 80 countries which have now abolished the death penalty, 36 states in the USA reintroduced capital punishment after a moratorium on executions from the late 1960s to mid-1970s. 107 prisoners have been executed there since 1977. The report finds that the use of the death penalty in the USA is arbitrary and may be based on factors beyond the circumstances of the crime-fmancial and community pressures, for instance, and the race and social status of both victim and offender. There is also widespread concern about the poor quality of legal representation given to defendants on capital charges. The report concludes that the death penalty is "arbitrary and irrevocable and results inevitably in the deaths of innocent people". The German Democratic Republic, Libya, Tunisia, and Pakistan have recently abolished capital punishment, and Amnesty International urges all "retentionist" governments to end the violation of "the right to life and the right not to be subjected to cruel, inhuman or degrading punishment."

electrocuted, beheaded,

REHABILITATION OF PROFOUNDLY DISABLED PEOPLE THE 1985-88 surveys of disability in Great Britain conducted by the Office of Population Censuses and Surveys distinguished 13 types of disability (eg, locomotor, hearing, personal care; see Lancet Oct 15, p 9171) and assigned disabled people to one of ten severity categories. People in the two most severe grades (9-10) had an average of 68 disability types. These profoundly disabled groups 1 Martin

J,

1988.

H, Elliot D. The prevalence of disability among adults. OPCS disability in Great Britain, report 1 London HM Stationery Office.

Meltzer

surveys of

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innovation in

approaches to disability held by the Throgmortion Society at the Royal College of Physicians in London on April 28. A point made at the meeting was that an attempt should be made to rehabilitate profoundly disabled people. No longer should they be assumed to be permanent bed-occupiers, be bypassed on ward rounds, and be the reason for staff to fear social workers, who might

inquire after the patients’ progress. The profoundly disabled are the who, if community care for less disabled people takes off successfully, will form the bulk of patients in rehabilitation units. If improvement in function, maintenance of optimum function, or a slowing of its deterioration can be achieved it is not only the patient who will benefit; family and carers could obtain much relief too. The difficulty in promoting the message that profoundly disabled people should be rehabilitated is that the evidence that something can be done for them is at present only anecdotal; and it will remain so unless larger numbers are treated. The technology for aiding mobility and communication is there (although there is room for improvement2), and innovations have been made in physiotherapy (such as the use of electrical biofeedback to teach new movements). The obstacles remain the usual ones of attracting staff to this kind of work and of ensuring that the resources required have not been obtained at the expense of larger numbers of less severely disabled people. One means of raising funds for rehabilitation of disabled people is the scheme introduced in France in 1987, which obliges firms with staff of 20 or more to allocate a proportion of their jobs to disabled people. Firms that do not comply have to pay a levy. ones

RACE TO SAVE THE OZONE LAYER DEPLETION of the stratospheric ozone layer is advancing twice as fast as was predicted only two years ago, and the 1987 Montreal proposals for a freeze on the production and use of ozone-damaging chlorofluorocarbons (CFCs) at 1986 levels by Jan 1, 1989, and a 50% reduction by mid-1998 now seem too modest. The Government of Finland, which hosted an international meeting on ozone in Helsinki last week, has now proposed that CFC consumption should be halved by 1995 and eliminated by the year 2000. Dr Mostafa Tolba, executive director of the United Nations Environment Programme (UNEP), which convened the meeting, described how attitudes had changed since the Montreal meeting, which he described as a negotiating nightmare. But now there was no need to plead or cajole, he said. "Governments are running, not walking, to Helsinki", he added. "People get frightened when they hear that a 1 % decrease in ozone is likely to cause a 4% increase in skin cancer." Dr Tolba suggested that the greatest need was to monitor what was happening to the ozone layer, especially in the southern hemisphere and the tropics. Since CFCs have been indicted as "greenhouse" gases, the interplay between ozone, carbon dioxide, and other gases also needed to be studied. Dr Tolba is aiming, through collaboration between UNEP and the World Meteorological Organisation, to establish a Climate Warming Convention by 1992. Methods of measuring ultraviolet radiation need to be refined, said Dr Tolba. A delegate from the Caribbean told the meeting that crops in his region were very sensitive even to small variations in radiation. More research was needed into new crop varieties resistant to ultraviolet light. One likely sticking point in achieving a ban on CFCs is who is to pay for the substitution of ozone friendly chemicals (and the associated expensive technological changes) for the CFC used in refrigeration in developing countries. India and China, which see ozone depletion as a problem created by the developed nations, appealed for financial assistance at an ozone conference in London in March. Such assistance was approved in principle at the Helsinki meeting, but Dr Tolba had earlier reminded delegates that only 11 of the 35 governments which ratified the Montreal protocol had so far paid their dues. 2. Mulley GPO. Standards of wheelchairs. Br

Med J 1989; 298: 1198-99.

Another issue raised at the meeting was the ozone depleting potential of halons, which was said to need urgent investigation. Scientific knowledge of halons is less advanced than that of CFCs, but some halons, which are increasingly being used in fire extinguishers, are believed to be ten time more dangerous to the ozone layer than CFCs. Dr Tolba is optimistic. "When ozone layer depletion affects people in their daily lives," he said, "they get very interested in doing something about it."

MIND OVER

(TOO MUCH) MATTER A DIET of bran and skimmed milk is just as effective as any proprietary very-low-calorie diet, according to the Drug and Therapeutics Bulletin,l and it is very much cheaper. Two pints of skimmed milk a day for women (or three for men), with bran for bulk, unlimited calorie-free drinks, and iron and multivitamin tablets to make up any deficiencies may help the severely obese to lose weight quickly, but such a diet will do little to improve eating habits. The benefits of weight reduction in obese patientsreduction of raised blood pressure, improvement in impaired carbohydrate tolerance, lowered risk of osteoarthritis of weightbearing joints, and increased life expectancy--can be reaped only if bad habits are permanently changed. Overweight patients are most effectively managed in groups, says the bulletin, and many people find the mutual learning and support gained from joining a slimning club helpful. Techniques aimed at recruiting the psyche seem to have the best chance of long-term success-behaviour therapy, for instance, can achieve excellent weight loss (an average of 17 kg in one year in one study, but the cost in time to patient and therapist was enormous); however, such treatment is rarely available within the National Health Service. Drug treatments (appetite suppressants, bulk-forming agents, and "starch blockers") are ineffective in the long term, says the bulletin, and so are surgical methods such as jaw-wiring, gastroplasty, and intragastric balloons. Regular aerobic exercise can contribute to weight maintenance by increasing resting metabolic rate, but the bulletin observes that obese people do not tolerate a weekly routine of 5 hours’ hard physical work. FOODBORNE DISEASE IN SCOTLAND 234 outbreaks of foodbome disease affecting 1825 people were reported to the Communicable Diseases (Scotland) Unit in 1987 2 In 49 of these, the food was eaten outside Scotland. Incriminated agents were species of Salmonella, Campylobacter, Shigella, and Bacillus, Staphylococcus aureus, Clostridium perfringens, and viruses; in 15 outbreaks the cause was unknown. 77% of the episodes were attributable to salmonellosis, S enteritidis phage type 4 (now a familiar contaminant of poultry and eggs) being the strain most frequently found. Although the number of listeriosis cases has risen in Scotland (as in England and Wales), none has yet been traced to infected food. The report also describes three outbreaks of hospital foodpoisoning, which brings the total during 1978-87 to 48: meat and poultry were the source of infection in over 90% of outbreaks where a food vehicle was identified. Over the past 15 years, the overall frequency of outbreaks has fallen, but the number of people affected per outbreak has increased. Have the removal of Crown Immunity from hospital kitchens in February, 1986, and the introduction of cook-chill catering had any effect on hospital foodbome infection in Scotland? Only time will tell. A FERTILE DOWN SYNDROME MAN As the trend for community care for mentally handicapped adults grows, attention needs to be paid to contraceptive cover for these individuals. Men with Down syndrome are said to be infertile. However, a 29-year-old man with apparently non-mosaic trisomy 21 was most probably the father in a pregnancy in an educationally 1 Managing obesity successfully. Drug Ther Bull 1989; 27: no 9. 2. Surveillance programme for foodborne infections and intoxications Scotland—1987.

Communicable Diseases (Scotland) Unit, Information and Statistics Division, Trinity Park House, South Trinity Road, Edinburgh EH5 3SQ. 1989. £1.50. ISSN 0263-8754.