3 The Needs of Drug Misusers with HIV-Disease

3.1 People who are at risk of HIV-disease through drug misuse have a wide range of social characteristics and come from all sectors of society. Nonetheless, it is important to acknowledge that some of those who become infected will face particular problems which may require agencies to re-assess the type of service they offer, and the way in which it is provided. In this chapter we discuss why the circumstances of some drug misusers may lead them to have different or additional needs to other people with HIV-disease, and go on to consider what those needs — and others common to all people with HIV-disease — may be.

3.2 There are circumstances, sometimes associated with drug misuse, which can compound the problems of caring for drug misusers with HIV-disease. Some people find themselves socially and economically disadvantaged as a direct result of their drug misuse. Moreover, high rates of drug misuse have been found in areas of serious social deprivation (for example in terms of poor housing, unemployment and educational opportunities), especially in parts of our larger cities. Drug misusers who first present to treatment and helping agencies are often relatively young, particularly in Scotland. Some will have criminal records for offences connected with possessing illegal drugs or financing a drug habit. Some will be in poor general health, and some will not be registered with a general practitioner. Some will have poor relationships with their families and non-drug using friends who might otherwise have provided help and social support. Such factors create additional difficulties for those offering help to infected and ill drug misusers.

3.3 Many young people who misuse drugs migrate to large cities where they are unlikely to have secure accommodation or employment. In particular we have been concerned to hear that some injectors in Scotland and Eire who have learned that they have HIV-disease have moved to London, and other parts of England, for a variety of reasons, including a perceived lack of access to flexible prescribing services.

3.4 The behaviour of some drug misusers can cause problems for services. The effects of drugs may impair concentration, memory, and recall of information, resulting in a failure to keep appointments. Some drug misusers may be anxious, suspicious and occasionally hostile about intervention by others in their way of life; this can be exacerbated if inexperienced staff anticipate a difficult and aggressive response. Particular difficulties may arise on hospital wards; we consider these in Chapter 6, Hospital Services.

3.5 Even where the needs of drug misusers are similar to those of other people they frequently have poorer access to services. This can be due to the socioeconomic factors outlined above; hostile attitudes on the part of service providers; and drug misusers' own reluctance to approach services, or their ignorance of how to do so. Specific needs which may have to be addressed by services are outlined below.

The Antibody Test

3.6 Antibody testing is in itself an intervention which will have an impact on behaviour, although we do not yet have sufficient evidence to draw firm conclusions about the effect on behaviour of a positive or negative test result. Commonsense suggests that it will vary significantly between individuals and according to the circumstances in which a test is taken. Obviously, all drug misusers should be helped to avoid HIV risk behaviour regardless of whether they are seropositive or not. Pre and post-test counselling offers an excellent opportunity to encourage safer behaviour and whether or not an anti-body test is carried out, and regardless of the test result, it is vital that those providing pre and post-test counselling give information and advice on the risks of transmission, and help clients to change behaviour which may put themselves or others at risk.

3.7 On an each individual basis counsellors will need to explore fully with clients the potential advantages and disadvantages of knowing their serostatus, and ensure that they realise the implications of a positive test result. The disadvantages of a positive test result are many. Considerable emotional and psychological upset may be involved in facing the likelihood of an unpleasant and life-threatening disease. There may be a strong temptation to revert to, or increase, drug misuse. Friends and family may not be supportive and may be frightened and accusing about their own risk of infection. There might be the additional burden of revealing how the virus was contracted if partners and families were unaware of the individual's drug using or sexual behaviour. It could become difficult to obtain medical treatment, dental treatment, life insurance, a mortgage, or further employment.

3.8 Some people might want to be tested for specific reasons: for example people who are at low risk, but are worried, may have their anxieties allayed by a negative result; those in steady relationships may want to know whether they are seropositive so they can take steps to avoid infecting their partners; and if a woman is pregnant, or considering pregnancy, she may wish to know her serostatus to guide the course of action she takes.

3.9 It can be advantageous to people to find out at an early stage that they have been infected because action may be taken which is thought to improve prognosis. Progression of the disease can be monitored both clinically and by laboratory tests, such as T4 cell counts and antigen levels. Decisions can then be taken as to when to intervene with antiretroviral therapy, such as zidovudine, or specific prophylactic therapies such as nebulised pentamidine to prevent pneumocystis carinii pneumonia. In addition, specific infections should be recognised earlier, and co-infections such as chlamydia and herpes can be treated if present. A positive test result may facilitate access to some helping and support services. Also, it may strengthen resolve to maximise physical and mental well-being through good diet, reducing stress and taking exercise; and to avoid co-factors which hasten the onset of disease, such as continued injecting drug misuse.

3.10 The balance of advantage and disadvantage surrounding testing will vary for different people, and is likely to change over time. If effective medical treatment for HIV-disease is found, then clearly it would become more advantageous to be tested. It is possible that as HIV-disease becomes more prevalent, the social consequences of being seropositive could diminish as people in general become more understanding about the disease. Alternatively, the situation could deteriorate in the future as people, in their anxiety to contain the infection, stigmatise those who have the disease to an even greater extent than now.

3.11 Overall we believe that for the drug misuser the burden of evidence may have shifted slightly more in favour of testing as understanding of HIV-disease increases and as more therapeutic interventions are developed. The balance between pros and cons will continue to change and should be monitored. But the following three principles must apply in every case:

i. the person concerned should make the decision — no-one else should make it for or require it from him or her;
ii. no-one should make a decision without appropriate information, advice and counselling from someone with the necessary counselling skills and up-to-date knowledge of HIV;
iii. the decision whether of not to have an HIV antibody test will be determined by individual circumstances.

Confidentiality

3.12 Once people learn that they are seropositive, they have to decide who else should know of their serostatus. There are two groups of people who may in certain circumstances need to know this information: personal contacts and relatives; and health care and other staff. In an atmosphere of support and acceptance, confidentiality would not be an issue. Unfortunately, because of the considerable hostility and prejudice often displayed towards people with HIV-disease, it is usually in an individual's interest to keep their serostatus confidential.

3.13 It is therefore vital that all staff who learn in the course of their work that a person has HIV-disease understand the adverse consequences for that person of this information becoming generally known. Staff who work in personal settings such as GPs' surgeries, or in small communities, particularly in rural areas, will have to make a special effort in this respect. However, all staff everywhere should examine their systems of record-keeping, and their mechanisms of referral, to avoid unintended disclosure.

3.14 We firmly believe that information on serostatus should not be passed on without the individual's consent. Exceptionally, however, there may be circumstances where specific, named individuals are at risk of becoming infected and could take action to protect themselves if this information was disclosed to them. If, after careful counselling and discussion, the infected person cannot be persuaded to allow an individual at risk to be informed, staff should consider telling the person at risk even though permission has been withheld. It may be that the infected person, faced with this decision, will be willing to be involved in joint disclosure. We are supported in this view by the General Medical Council's May 1988 statement on the ethical considerations of HIV-infection and AIDS.

3.15 The preservation of confidentiality in the present climate is an important individual right, but one which can be in conflict with the individual's need for a wide range of inter-related services for which they may become eligible as a result of their HIV-disease. Clearly, for example, if the only one to know of a person's seropositivity is his or her medical practioner then care in the community when that person is terminally ill with AIDS will be difficult. The support of nursing and allied professionals is crucial if good quality care is to be given, and there may be a number of other helping and support services available if knowledge of HIV status is shared. The advantages or otherwise for any individual of making known their serostatus to service providers will depend on the local availability of services, and the severity of illness.

3.16 There is a real danger that confidentiality can be inadvertantly broken as more and more staff in different services learn of a client's HIV-status. Services must ensure that information on serostatus is only disclosed to those staff who need to know it. We recommend that services formulate policies which recognise the importance of confidentiality and which provide detailed and specific guidance for their staff. The following principles should inform those policies:

i. information about serostatus should not be passed on without an individual's consent.
ii. The only possible exception is where a specific, named individual is at risk of infection but the infected person cannot be persuaded, through counselling and discussion, to allow this disclosure. Under these circumstances, the person at risk may be informed. This course of action has already been suggested for doctors by the General Medical Council.
iii. Before a confidence is shared — that is, passed on with an individual's consent — clients should be fully aware of the possible consequences. While they should realise that some services may be available as a priority to people with HIV-disease, they should also be informed of the likely number of people who could learn of their HIV-status should they reveal this to gain access to those services.
iv. Services should establish which staff need to know a client's serostatus, and should ensure that this information is strictly confined to those people only.

Medical Needs

3.17 People with HIV-disease need regular monitoring of their health status by a practitioner trained to test for progression of infection and recognise the onset of opportunistic and other diseases. Where it is judged clinically appropriate, they need access to therapies to prevent the onset of disease, to treat established conditions and to alleviate distress and discomfort. For many serious conditions, hospital in-patient treatment will be necessary; others may be managed on an out-patient basis or by general practitioners.

3.18 Drug misusers who have been infected with HIV may be affected by a wide range of physical and mental conditions arising from their drug use. In some cases these may mimic the HIV syndromes which comprise AIDS, ARC and PGL and so cause diagnostic confusion. Additionally, seropositive drug users are likely to suffer from more physical illness than other seropositive people. This may be due to the influence of lifestyle, drug use and self-neglect on an already partly immunocompromised individual. Particular problems may be associated with injecting drug misuse including Hepatitis B, septicaemia and collapsed veins. Dosage of pain-relieving drugs will need to take into account the degree of tolerance which may have been acquired through regular opiate or sedative use. We have also received evidence that drug misusers tend to present late to services, when their illnesses are more advanced than in other patients, compounding the problems of providing medical treatment.

3.19 Psychological disturbance is very common, presenting as anxiety, depression, phobias or suicidal tendencies. There may be an exacerbation of drug misuse in response to these symptoms. In some cases psychotic illness may be precipitated or may co-exist. Later in the course of infection AIDS-related dementia may develop. Help from mental health professionals will be necessary in responding to these conditions. The provision of in-patient facilities and support in the community requires the early involvement of pyschiatric services in planning and implementation.

3.20 Careful follow-up of infected individuals is necessary because many different problems may occur at different stages, and many of these are amenable to therapy. This has two important implications:

i. medical and support needs will significantly vary in nature and intensity over time and will need to be regularly reassessed;
ii. early diagnosis of problems is needed to allow early intervention in treatable medical (including psychiatric) conditions.

It is also important to advise HIV-infected people how to avoid co-factors which might hasten the progression of disease. These include continuing injecting drug misuse, paricularly if contaminated street drugs and unsterile equipment are used; exposure to sexually transmitted diseases; and re-exposure to HIV. In the light of these considerations we conclude that the attraction of seropositive drug misusers to services at an early stage is as relevant for individual health as it is important for the prevention of the onward spread of infection. A reduction in harmful behaviour, and early diagnosis of disease may favourably influence the progression of infection.

3.21 Because medical understanding of HIV-disease is changing so quickly and because of therapeutic developments, it is important that people with HIV-disease should have regular access to a physician who specialises in this field, even if continuing care and routine treatment are managed by a non-specialist. We recommend that all drug misusers with HIV-disease should be examined at least every 6 months by a physician who is experienced in treating HIV-disease. A range of interventions might be considered, including the following:

i. counselling about the transmission of HIV to others by blood and sexual contact and by procreation. The newly diagnosed seropositive must be advised about the dangers to health of continued drug misuse especially by injection or sharing equipment since this leads to exposure to other infections. They should also be warned of the dangers of sexually transmitted infection. In this regard, both individual and public health concerns coincide. A programme to facilitate behaviour change towards safer sex and abstinence or safer drug practice should be instituted;
ii. identification of any co-incidental infections, such as covert genito-urinary ones, especially if these are treatable. A chest X-ray will help to identify past or current tuberculosis;
iii. assessment of the level of immunity and HIV activity including examination of the mouth, skin, lymph nodes and abdomen (especially for splenomegaly). Investigations will probably include T4 cell counts, HIV antigen and full blood counts;
iv. administration of antiviral therapy: Zidovudine, a toxic and expensive drug, is now routinely prescribed for those with ARC or AIDS. This drug may initially cause side effects and it requires frequent hospital attendance. Nevertheless, it has been shown to prolong and improve the quality of life in AIDS patients. Some experience in New York and Edinburgh indicates that compliance in injecting drug misusers is reasonably good, especially if they attend services for regular prescriptions of methadone;
v. treatment of opportunistic infections: Early aggressive therapy is indicated against the many opportunistic infections in AIDS (especially PCP), not only because they are life-threatening but because they may cause further deterioration of the immune system especially if prolonged in duration. Prophylaxis is now frequently employed against many of these and regular nebulised pentamidine is proving very successful in preventing PCP.

Drug Needs

3.22 The discovery that they are seropositive can lead drug misusers to reassess their use of drugs. They may decide to try and stop altogether, to cut down, to continue as before, or may feel the need to increase drug use, if only temporarily in response to their diagnosis. We discuss the prescribing of substitute drugs in Chapter 5, Specialist Drug Services. Helping agencies will need to consider the implications of a person's physical or psychological dependence on drugs; be alert to the need to avoid an unplanned and unpleasant withdrawal; and be ready to consider, where appropriate, whether the prescribing of substitute drugs might be helpful to both individual and public health.

Personal and Social Needs

(i) Advice, Support and Counselling
3.23 People with HIV-disease will be vulnerable to the same unhappiness, fear and anxieties as people coming to terms with any other degenerative and life-threatening disease. However, additional burdens are imposed by some of the characteristics of HIV-disease and its modes of transmission:

—    infected persons may have infected others in the past, and must regard themselves as infectious for as long as they live. They must be persuaded to change their behaviour so as not to put others at risk; this may require major changes in lifestyle and a re-assessment of what they had hoped to obtain in life;
—    some people with HIV-disease will be faced with the problem of telling their families and friends how they acquired the infection and will have to cope with reactions to this;
—    many people are frightened and ignorant about HIV-disease. Some may adopt the attitude that HIV-disease is `self-inflicted', and may stigmatise or isolate infected people.

3.24 The emotional trauma experienced when people first learn that they are HIV positive may lead some individuals to have an especially acute desire for drugs, and they may therefore increase their drug misuse at this time with the possibility of accidental overdose, or attempted suicide. Ex-misusers may have particular difficulty in coming to terms with their diagnosis. Having made the considerable effort to stop using drugs, perhaps believing they are about to start a new and better life, they may well feel particularly bitter and upset that their past behaviour has left them infected, and some may be tempted to start using drugs again.

3.25 Seropositive people who are using drugs will require information about how their current drug misuse is affecting their physical and emotional wellbeing, and will need support whether they decide to abstain or continue to misuse drugs. Independent of these emotional needs, when drug misusers first learn that they have HIV-disease they may require practical information and advice on welfare rights, legal issues and health care issues.

3.26 In conclusion, it is apparent that people with HIV-disease need access to advice, support, and counselling'. No single individual or agency can meet all these needs; medical staff, professional counsellors, workers in specialist drug services, friends and family, volunteer befrienders, and mutual support groups may all contribute. Indeed, individuals will vary tremendously in the kind of help they require. What is clear, however, is that all counsellors and staff offering advice to those with HIV-disease must be aware of the range of physical and pyschological responses to drug misuse. For some, this will entail additional training.

(ii) Accommodation Needs

3.27 Drug misusers are less likely than other people with HIV-disease to be in suitable, stable accommodation, for the reasons we outline at the start of this chapter. Additionally, in common with other people with HIV-disease, they may find themselves homeless as a result of hostility or prejudice. Those who have recently become abstinent, or who wish to do so, may want to move away from their local drug scene to reduce their chances of relapse. The existing housing legislation, and the current shortage of housing, means that accommodation can be very difficult to obtain in these circumstances. It is especially hard for homeless drug misusers to adopt safer drug use and safer sexual behaviour, so housing can be a pre-requisite of behaviour change.

3.28 Once individuals develop significant symptoms it is important that they are housed in accommodation where they can keep warm, have easy access to medical facilities, and will not be forced to move on occasions when they need rest. When people start to have bouts of serious illness, it is essential that their accommodation allows domiciliary care to be provided. At this stage, they will be spending episodes in hospital, but these can be minimised if their housing situation enables them to be cared for in the community. In some cases, existing accommodation can be adapted for people who are ill.

3.29 To date, there is little experience in this country of providing respite and terminal care to drug misusers with HIV-disease. Respite care may be needed periodically for those individuals living alone who become ill and are temporarily unable to look after themselves; for those who are being cared for by relatives who need a break; and for children whose parents are ill. As most people with HIV-disease die of an acute infection after a period of relative health, existing hospices and nursing homes are not generally an appropriate source of residential care for them. Most cater for elderly people, so would be unsuitable, and virtually all the rest are funded to care for specific client groups (such as people with cancer) and are therefore unavailable to people with HIV-disease. We greatly welcome the efforts made by non-statutory agencies such as Mildmay Mission and London Lighthouse who have established residential units for people with HIV-disease, including drug misusers. Further developments are planned by other agencies, and we hope that these too will come to fruition.

(iii) Physical Needs

3.30 As with other people who have HIV-disease, when drug misusers become ill they will need help with various day-to-day tasks, and their needs will develop with their illness. They may require assistance with shopping, preparing food, housework, laundry, keeping warm, transport to hospital/specialist drug service/day care centre/self-help group etc. During episodes of acute illness, they may need nursing care at home. Physical needs can be the most important of all.

Service planners must realise that no amount of personal counselling and advice can compensate for cold, hunger and discomfort.

The Needs of Women

(i) Access to Services

3.31 Women may have reduced access to services because they find the service off-putting and not understanding of their needs; because it is difficult to find somebody to look after their children; or because they are frightened that their children will be taken into care if they admit to having a drug problem. Evidence indicates that women are far more likely to attend services which consciously aim to attract them; unfortunately, many services inadvertently deter them.

3.32 A number of measures may help to overcome these barriers:

i. it is important that moral judgements are not brought harshly to bear on women; often women can be made to feel that drug misuse or types of sexual behaviour are even less acceptable in them than in men;
ii. our first report emphasised the need for Social Services Departments to make known a policy that drug misuse per se should not in itself be a reason for separating parents and children. We are pleased to note that this recommendation has since been repeated in the report of the Local Authority Associations' Officer Working Party on AIDS, and take this opportunity to reiterate it here.
iii. Women-only sessions, and the availability of women doctors and counsellors/advisers can help attract women to services.
iv. Where services see significant numbers of women with young children, creches or child-care facilities should be provided, at least at certain times.

(ii) Fertility and Pregnancy

3.33 For many infected women, their compromised fertility is one of the most difficult and distressing aspects of HIV-disease. The urge to procreate may be intensified. Even women who never wanted children can find it difficult to accept that the choice might have been taken away from them, and feel upset and depressed over this specific issue. Good family planning advice is essential at this time. It is not always realised that while condoms can offer some degree of protection against HIV-infection, they are not as effective in preventing pregnancy as some other methods of contraception. People who decide not to have childen should be advised to use two methods of contraception simultaneously, one of which should be a condom. Men and women with HIV-disease, and their partners, require advice on family planning issues. We are concerned by the reduction in specialist family planning services which has taken place over recent years, and urge Government to reverse this trend.

3.34. Women who become pregnant, by design or otherwise, will need practical advice and counselling to enable them to decide whether to continue with the pregnancy, and to cope with the consequences of that decision. The likelihood of HIV transmission from mother to foetus, once thought to be very high, is currently thought to be between 25% and 40%. Information on this is constantly being updated but there is already clear evidence that the virus is more likely to be transmitted to the foetus the later the woman is in the course of the infection. A low T4 count and the presence of symptoms is associated with a greater chance of transmission. Once the baby is born, it can be some time before there is sufficient evidence to say whether it is infected. If it does develop HIV-disease the mother's guilt may reach an intolerable level. One early report indicated that pregnancy itself could precipitate the onset of illness, but experience now suggests that pregnancy has no adverse effects.

3.35 Some seropositive women will want to have a child. Services may not approve of this, but universal guidelines advocating termination may only have the effect of deterring women from seeking early ante-natal care. Termination should be available but not pressed upon women. In Edinburgh, only where a woman is found to be clinically ill or to have laboratory evidence of active HIV-disease is she encouraged to have a termination, and most women accept this advice when the medical grounds are explained to them. Counselling must be available to seropositive women who are pregnant, which addresses the implications of HIV-disease for themselves and their children, taking account of the most up-to-date knowledge of the effects of pregnancy upon women with HIV disease and the likelihood of transmission to the child.

The Needs of Partners and Family

3.36 Partners and parents of drug misusers with HIV-disease may need personal counselling, advice and support to help them come to terms with the situation and to understand its implications for themselves. They may be unable to understand or accept the behaviour which led to infection, and may feel a sense of guilt or inadequacy because they were unable to prevent their child or partner from behaving in this way. Risk behaviour such as uncontrolled drug misuse or prostitution may have already disrupted the family. Sometimes, the root cause of drug misuse can be traced to family interaction. In these cases, family support may be an important corollary to the support of the infected person. The Northern Region's Support Project has been particularly successful at enabling families to come to terms with these issues.

3.37 Child care can pose particular problems as carers become ill, especially if in-patient treatment is required. Although men may have sole responsibility for child care, the majority of people in this position are women. Women with HIV-disease may also be in the position of caring for another person with HIV-disease. Any carer who is ill will be faced with conflicts of interest. If she neglects herself, she will be unable to care for her family. Parents who are ill also need to consider the more distant future and be helped to make plans for their children. These plans will be complicated if the children themselves have HIV-disease.

Conclusion

3.38 These varied needs of drug misusers and others with HIV-disease can only be addressed by a range of service provision. Comprehensive information on existing services for people with HIV-disease is not yet available centrally, although it is hoped that the reports compiled by health authorities under the AIDS (Control) Act will soon give an accurate picture. The evidence we have received indicates that, as might be expected, provision is very patchy with good services in some areas and none in others. We have been disturbed by the lack of planning of services for drug misusers with HIV-disease in many parts of the country. Many services do not have the capacity to meet the needs identified in this chapter, yet are making no attempt to prepare for the demands of the future.

' advice — the imparting of authoritative information, explanation, guidance, clarification of options; support — the provision of encouragement, enhancement of morale, maintenance of sociability etc, together with specific practical assistance;
personal counselling — the skilled and principled use of relationship to facilitate self-knowledge, emotional acceptance and growth, and the optimal development of personal resources.
Chester, R. (1987) Advice, Support and Counselling for the HIV positive. A report for DHSS.