5 Changing Behaviour

5.1 We have discussed the action we consider necessary to bring more drug misusers into contact with services. In this chapter we examine steps which can be taken to change their behaviour once contact has been established. We also discuss briefly how the behaviour of those who remain out of contact can be influenced.

A Hierarchy of goals

5.2 Chapter 2 referred to the need for services to work with those who continue to misuse drugs to help them reduce the risk of spreading or acquiring HIV. Here we suggest that services need to adopt a hierarchy of goals in dealing with drug misusers and to accept that, at any given time, different goals may be appropriate for different individuals. Thus, with regard to drug misuse, the following goals will all reduce the risk to the individual and to others:

a. becoming drug free
b. switching from injecting to oral use
c. avoiding sharing equipment.

Drug misusers cannot be allocated to simple categories of `wanting to give up drugs' or `not wanting to give up drugs', or of `wanting to change' or `not wanting to change'. Drug misusers will be found to exist somewhere on a continuum between these extremes and to show an ambivalent attitude. Services should therefore strongly encourage drug misusers towards a goal of abstinence, but for drug misusers who are not immediately motivated to give up, goals (b) and (c) will be more realistic for the time being. Thus drug services must be prepared to help one client to give up drugs entirely whilst advising the next client on how to minimise the risks of continued drug use. We see these goals as complementary, not contradictory, and we draw an analogy with advice on cigarette smoking. In this allied field it is widely accepted that advice on reducing the risk of continued smoking by switching to low-tar and filter cigarettes must exist alongside the advice on the greater benefit of cessation of smoking entirely.

5.3 The different goals for drug misusers must not be seen as in competition. Care must be taken when advising on avenues to abstinence to ensure that advice is given on ways of reducing the risk in the event of on-going use or a return to use. Likewise, advice on risk-reduction with regard to on-going use must not encourage continued use and should where possible increase awareness of the greater benefit from abstinence as and when that may be achieved.

5.4 Alongside these goals related to drug misuse lies the important goal of preventing spread of HIV through sexual activity. Here, the same considerations apply as with the population generally but there are three additional special factors:

a. injecting drug misusers who have shared equipment may be at greater risk of already being infected;
b. some drug misusers finance their use of drugs through prostitution;
c. drug misusers may be less likely to heed general publicity about sexual transmission.

Advice and Counselling on Risk-Reduction

5.5 We were encouraged to learn from the evidence we received that many services in contact with drug misusers are giving advice on HIV risk-reduction and in the main they reported few difficulties in doing so. The advice given covered safer injecting (in terms of HIV), safer sex, availability of injecting equipment and, in some cases, cleaning of equipment. The concept of advice on abstinence and risk-reduction existing side by side does not seem to be creating practical problems. The evidence suggests that contact with a helping agency, and advice on safer practices, can be effective in reducing the sharing of equipment, particularly when there is easy access to clean injecting equipment. There is much less evidence of changes in sexual behaviour (see below).

5.6 Drug misusers who are not thought to be injecting must not be overlooked when advice is given on AIDS and the need to avoid shared injecting. Evidence from several sources suggests that drug misusers who state that they are inhaling or swallowing may also be injecting occasionally. Even if they have not yet injected they may well mix with others who do inject and may encourage them to try. Any injecting which does occur amongst this group is very likely to involve someone else's equipment. It is essential that these individuals should be warned about the dangers of shared injecting and how to avoid them. Similar considerations apply to those who are receiving prescribed oral preparations.

5.7 Advice on safer sex seems to be more problematical for some staff to give and for many drug misusers to follow. Many staff who work with drug misusers have little previous experience in discussing sexual matters and find it difficult to do so particularly with clients who have come to discuss their drug problem rather than their sex life. Moreover, many drug misusers are reluctant to talk about sexual matters. Some agencies have found it easier to cover sex as part of a general discussion on health care; others try to build a rapport with the client first. A significant number of callers at helping agencies call only once or twice however, and it is therefore essential that the opportunity to provide advice on safer sex (and safer practices generally) is seized as early as possible. Service managers should ensure that all staff working with drug misusers (including those in the voluntary sector) have access to training on sexual counselling. This may be provided either through formal courses or informally using staff experienced in this field (e.g. GUM or Family Planning staff).

5.8 All staff who come into contact with drug misusers can play a part in providing information on AIDS and the need for safer practices. In some cases this may simply involve the provision of a leaflet (such as the SCODA leaflet — `AIDS — How Drug Users can avoid it') by, for example, a police officer or pharmacist. Where possible, details of the local drug service should also be provided. In other cases, there may be an opportunity for a generic or drug-specialist worker to discuss the subject during a one-off contact. In cases of prolonged contact it should be possible to raise the subject on a number of occasions and discuss what progress the individual concerned is making.

5.9 In conclusion, we recommend that all services in contact with drug misusers should inform them of the risks of HIV and how they can avoid and reduce these risks both sexual and of injecting.

Provisions of Condoms and Injecting Equipment

5.10 Many drug services are providing drug misusers with free condoms obtained either from the Family Planning Clinic or direct from the health authority. We commend this move as reinforcing advice on safer sex and providing the means with which to practise it. We recommend that all services for drug misusers, including general practitioners, should have the facility to provide free condoms.

5.11 The question of provision of injecting equipment is more complex. Earlier this year, the Government set up fifteen pilot syringe exchange schemes in different parts of the UK. As well as providing new injecting equipment on an exchange basis these schemes give information on HIV and safer practices and offer counselling for drug problems. A larger number of similar schemes have been set up independently by health authorities and drug agencies. In addition, since February 1986 community pharmacists have been advised by their professional body that they may, at their discretion, sell needles and syringes to drug misusers: anecdotal evidence suggests that whilst significant numbers of pharmacists are willing to sell equipment, availability of equipment through this outlet is patchy.

5.12 Early findings from the monitoring of the pilot syringe exchange projects indicate that some exchange schemes can be successful in attracting drug misusers who are not otherwise in touch with helping services. Other schemes however have not attracted significant numbers of clients (Chapter 4 discusses the sort of features which seem to make services generally more attractive). No systematic data are yet available on behaviour change of those attending the schemes, though witnesses involved in exchange schemes have reported a major reduction in sharing.

5.13 Exchange schemes have been established in other parts of the world, most notably in Amsterdam where they have been running for some years. Research on the effects of the Amsterdam schemes is inconclusive: whilst there is a reported reduction in sharing overall since they have been running there is no apparent difference in sharing rates between those using the schemes and others. However, the schemes' users make up a large proportion of the city's injectors as a whole and the schemes may be indirectly responsible for changes in sharing amongst non-clients.

5.14 In some countries needles and syringes can be readily purchased at low cost in shops or supermarkets. Two such countries (Italy and Spain) have very high prevalence of HIV and AIDS amongst drug misusers. However, the virus had already spread widely in these countries before drug misusers were made aware of the risks of sharing. We do not therefore regard these countries' experiences as evidence that ready availability of injecting equipment need be associated with the spread of HIV where health education is provided. It should be noted that HIV spread extremely rapidly in Edinburgh when needles and syringes were in short supply.

5.15 The basic argument in favour of improving needle and syringe availability is that some drug misusers will inject come what may; making clean equipment readily accessible to them will reduce the likelihood of them sharing. This appears to be borne out by evidence from areas where the availability of equipment is limited — the result seems to be more sharing rather than less injecting. The basic counter-argument is that readier access to sterile equipment will encourage more drug misusers to start injecting or inject on a more regular basis thus creating a larger pool of injectors. The argument continues that since sharing will never be completely eliminated, as some injectors will share regardless of the hazards and that others will do so occasionally in an emergency, this will increase the size of the population at risk of acquiring and spreading HIV. This argument gains some support from a recent survey of non-injecting drug misusers 21 per cent of whom said they would start injecting if sterile equipment were easily available.

5.16 It is difficult to weigh the benefits of the possible reduction in sharing against the drawback of a possible increase in the size of the population at risk. The pilot syringe exchange projects will help provide more systematic evidence of the reported reduction in sharing. But any increase in injecting is likely to remain hidden. We see no prospect of these pilot schemes, or any other experiments, providing conclusive evidence in the forseeable future about their overall effectiveness in combating the spread of HIV. Yet the need for preventive action is urgent. In the light of the limited research and anecdotal evidence, and direct experience of working with drug misusers, our judgement is that the benefits of reduced sharing which will occur if needles and syringes are made readily available alongside health education will outweigh the risks involved in any increase in the injecting population which may result. We consider that the very existence of syringe exchange schemes also plays a valuable role in broadcasting to all drug misusers that sharing equipment is dangerous. We recommend that further exchange schemes be set up drawing on the experience of the more successful pilot projects. Monitoring of these schemes should continue so that their success in reaching drug misusers and changing their behaviour can be assessed. For some drug misusers behaviour change may take several months to occur and these schemes should not be judged wholly by short-term results. Ultimately they must be judged on lasting evidence of behaviour change.

5.17 Other things being equal, exchange of equipment is preferable to over-the-counter sales since it helps to ensure that new equipment is issued only to existing injectors and that used equipment is properly disposed of. It also provides greater opportunities for education about HIV and safer practices and counselling for drug problems. However, many injecting drug misusers will not be reached by exchange schemes either because they cannot be sufficiently local or because they are perceived as in some way threatening. The present scheme in Glasgow is an extreme example since it is hospital-based, guarded by a picket of local residents, and can issue only three syringes at a time. In the light of these drawbacks it may not be surprising that just one local pharmacist sells many times more syringes than the scheme manages to give away free. However, at the other extreme, the schemes which have been most successful in attracting clients would certainly not claim to have reached anything like the majority of local injectors. The sale of equipment through community pharmacies will therefore remain an important outlet for those injectors who are not within easy reach of an exchange scheme or will only accept the anonymity of a simple commercial transaction. We recommend that community pharmacists should be encouraged to sell equipment at reasonable cost to injecting drug misusers and that, wherever possible, pharmacists should advise customers about any local exchange facility, encourage the use of condoms, and provide health education and information on local facilities for drug misusers by provision of leaflets and, where possible, by verbal advice. Health authorities should provide pharmacists, on request and free of charge, with disposal facilities for used equipment and pharmacists should encourage customers to return used equipment.

5.18 We recommend that all syringes should bear an indelible warning about the danger of sharing injecting equipment. The Government should discuss with syringe manufacturers how this can be achieved as soon as possible.

5.19 Finally, we recognise that the pattern of injecting and existing needle and syringe availability is different in different areas. The action needed locally will depend on these local circumstances. In some areas, where injecting is prevalent and equipment is in short supply, immediate action will be needed to increase the supply. In other areas, where many pharmacists sell equipment and there may already be an exchange scheme, efforts might need to focus on advertising the availability of equipment. We caution against preconceptions about local circumstances and refer to the example of Liverpool where the scale of the local injecting problem came to light only after an exchange scheme was established. It will be important to secure the co-operation of local police forces in drawing up local arrangements for supply of equipment. We recommend that District Drug Advisory Committees and Local Pharmaceutical Committees should immediately agree a plan for ensuring and advertising the availability of injecting equipment in the light of local circumstances. Local police should be consulted on and should co-operate with the agreed plan, to ensure that police activity does not discourage drug misusers from obtaining sterile equipment and/or returning equipment.

HIV Antibody Testing

5.20 There are many complexities surrounding HIV antibody testing. In this report we confine ourselves to considering what role it can play in combating the spread of HIV through injecting drug misuse. Chapter 4 discussed the possible value of antibody testing facilities in making contact with drug misusers. Here we consider the possible value of the test in bringing about changes towards safer behaviour.

5.21 The obvious problem with the antibody test as a tool in changing behaviour is that the same advice about safer behaviour applies to those found antibody positive, those found antibody negative and those who are untested. The evidence we have received indicated that the reactions of drug misusers to the results of tests vary tremendously. Amongst those found antibody negative responses range from carrying on as before to being motivated towards abstinence or a safer method of drug use. Reactions to a positive result often include fear, anxiety, depression, shock, anger, guilt and bewilderment. For some, the shock may act as a springboard to rehabilitation; for others concern about infecting other people or about increasing the risk of developing AIDS may lead to the adoption of some risk-reduction. But there is also evidence of many cases where a positive result has led to no behaviour change or to a marked deterioration. In some such cases anxiety/depression has led to increased drug misuse with chaotic, self-destructive behaviour. There have been cases of suicide and deliberate overdosing. Some antibody positive drug misusers have displayed indifference to infecting others.

5.22 This range of possible reactions highlights the need for caution before undertaking an antibody test and for proper pre- and post-test counselling. The counselling should explore whether the client really wants to know the result or is simply hoping to be found antibody negative, and how she/he would react to either result. It should also explain the implications of the result including:

—    the limitations of the test
—    the distinction between AIDS and HIV positivity
—    current views on likelihood of progression
—    current treatment approaches including their availability and limitations
—    the significance of co-factors in developing AIDS, particularly the need to avoid injecting drugs (especially with shared equipment) and exposure to other infections (especially sexually transmitted ones)
—    the possible psychological effect of a positive result and the effect this may have on the individual's drug misuse
—    possible adverse social consequences such as job loss, problems with life insurance, home loans and housing.

If, after counselling, there are serious doubts about the individual's ability to cope with a positive result we consider it would not normally be to that person's advantage to have the test at that time. We see two exceptions to this general principle: where a test is necessary for differential diagnosis or where the individual is pregnant, or planning to become so, and risks giving birth to an infected baby.

5.23 Counselling about the antibody test is an important and difficult task. In the case of drug misusers it will usually be most effectively undertaken by staff who already know something about the individual and his or her drug use. All drug-specialist staff and general practitioners should therefore be trained to provide this counselling. Testing facilities should normally be available at specialist drug services. Where, exceptionally, this is not possible there should be a streamlined referral system to a local testing service.

5.24 We have heard evidence of a number of cases where drug misusers have been tested without their permission or without their knowledge and subsequently informed that they were antibody positive. We deplore this unprofessional behaviour and urge all professional bodies concerned to take action against any member who behaves in this way. There are also cases of drug misusers being refused admission to inpatient and residential rehabilitation facilities either because they refused to be tested or were known to antibody positive. We strongly disapprove of such practices and consider that they will do nothing to combat the spread of HIV and are likely to exacerbate the problem. In close communities, as in the community at large, successful prevention will depend upon educating individuals to regard everyone as potentially HIV positive and to take the necessary precautions.

5.25 In conclusion, we recommend that antibody testing of individual clients should be used with caution and only undertaken with informed consent following full counselling (as outlined in para 5.22). All drugspecialist staff and general practitioners should be equipped to provide this counselling and drug services should normally have the facilities to perform tests. Where testing cannot be done on site there should be a streamlined referral system for testing elsewhere. Being tested for HIV should never be a pre-condition of drug treatment or rehabilitation services.

Special Groups

5.26 Achieving behaviour change takes on even greater importance amongst drug misusers who are already infected with the virus, and amongst others who are at very high risk of acquiring and spreading it (e.g. prostitutes). The principles outlined in this report apply equally to such individuals. However, the risk they pose to the community generally, as well as to themselves, means that particularly intensive efforts may be needed to reach them and help them adopt safer practices. The wider question of management of HIV positive drug misusers will be addressed in our second report. Meanwhile, we cannot stress too strongly the need to maintain contact with them and to consider every possible way of helping each such individual move towards safer practices.

Drug Misusers who cannot be brought into contact with services

5.27 Although the changes we are recommending should enable services to make contact with much larger numbers of drug misusers, there will still be many drug misusers who remain out of contact with services. A major programme of information and education will be needed over a sustained period in order to reach this group. National campaigns will be of continued importance but local efforts are also necessary in all areas. Local publicity and education should give straightforward information about the risks of HIV and how to avoid them, availability of sterile injecting equipment, cleaning of equipment, safer sex, and the availability of services for drug misusers. A wide range of formats is likely to be most effective including, for example, posters and comics (but excluding excessively morbid presentations which are unlikely to be effective and may reinforce the misconception that people infected with HIV will look ill or abnormal). Efforts to make use of the grapevine and peer pressure will be as important as more formal approaches. Health Education Officers and Local Education Authority Drug Co-ordinators will be well placed to make an important contribution to all this work which should, in our view, be co-ordinated by District Drug Advisory Committees. We conclude that a campaign of education and information is needed both nationally and locally. In the long run we believe that sustained publicity and education will prove to be the most important influence on changing behaviour.

5.28 A substantial number of injecting drug misusers, and those who might be tempted to inject, will not be in current contact, or even in contact at any time with services. Additionally, many episodes of injecting drug use are not planned, and occur in situations where there is no immediate access to new or clean equipment. These circumstances apply particularly to occasional injectors. It is vital therefore that drug misusers should know how to clean injecting equipment in the event that they do not have access to new equipment. We recommend that advice on cleaning injecting equipment should be available in all areas. The advice should make clear that cleaning cannot offer full protection against infection and is no substitute for using clean equipment, but that it can help prevent infection when clean equipment is not available.