1 Key Issues

1.1 This is our second report on AIDS and drug misuse. In it, we address the implications for services of HIV-infection and related illness in drug misusers, and consider the ways in which services will need to develop in order to provide care to drug misusers who become ill.

1.2 Many important principles have emerged from our work which should guide those who plan and deliver services. While the main thrust of our recommendations will remain relevant for some years, it may well be that the details will change. To date, there has been little experience in this country of caring for drug misusers who are ill with HIV-disease, and knowledge about HIV-disease is growing and constantly evolving. We anticipate that some of our recommendations will be overtaken as understanding and expertise develop and as other groups address in detail the many complex issues we have tried to consider more generally.

1.3 The first point we would make is that an inevitable consequence of focusing a report upon the responsibilities of services, and the funders and planners of services, is that the voice of the client tends to get neglected. Most of the people with whose needs this report is concerned are — contrary to the popular stereotype of a drug misuser — articulate individuals with views about the help they may or may not need, and the way in which it is provided. While we, and other so-called "expert" groups, can offer guidance based on our collective experience as practitioners, services will also need to listen to, involve, and where necessary be guided by their clients.

1.4 In the course of producing this report we have received evidence from many individuals and organisations in this country and overseas. All that we have heard has served to confirm the validity of the recommendations in our Part 1 Report, and the need for vigorous and determined preventive action in accordance with them. Those recommendations are reiterated at Annex 1. We urge Government, statutory authorities and service providers to ensure that they are fully implemented without further delay. Action must be taken now if we are to have any significant impact on the number of drug misusers, and their sexual partners and children, who become ill in the future.

1.5 But even if the spread of HIV-infection among drug misusers slows dramatically — and we have seen no evidence to indicate this — we must still expect a sudden and significant increase in the number of drug misusers with HIV-related illness. Drug misusers currently form the fastest-growing group of people with AIDS in this country. Up to the end of September 1988 over 1,500 injecting drug misusers in the UK had been found to have a positive HIV-antibody test, and many more will be infected but are untested. Drug misusers who contracted HIV in the mid-1980s are now becoming ill, and are consequently becoming more infectious. Recent research suggests that sharing of injecting equipment is still widespread, so in all probability the virus is still being rapidly transmitted. The Working Group chaired by Sir David Cox has concluded that HIV infection among drug misusers could give rise to 1000 AIDS cases in England and Wales by the end of 1992 and warns that a large-scale epidemic among drug misusers could lead to a rapid rise in the numbers of new cases. The Working Party chaired by Mr Winston Taylor estimated in 1987 that there would be between 425 and 646 new cases of AIDS among drug misusers in Scotland between 1989 and 1991. As a high proportion of women with HIV-infection acquire the virus through injecting drug misuse, we can also expect to see many more babies born to seropositive mothers in Great Britain over the next few years. There will be many more drug misusers who become ill with HIV-related conditions which do not meet the clinical criteria for AIDS.

1.6 While the prevalence of infection and illness will vary significantly between different areas, it is important that suitable services, including drug misuse services, are in place to meet local needs. Failure to provide local services can result in infected drug misusers migrating to areas where the services they want exist — which has implications for both the spread of HIV-infection and the health of the individual concerned. Some areas will have longer to prepare before being faced with drug misusers with advanced HIV-disease, but in all parts of the country, services must have the capacity to respond to increased numbers of ill drug misusers.

1.7 Drug misusers are not a homogeneous group. A wide variety of people may have acquired HIV infection through injecting drugs, some of whom may have subsequently stopped using drugs altogether. Some people who misuse drugs may have acquired HIV-infection sexually; indeed, people find it more difficult to adopt safer sexual practices when they are under the influence of drugs. Service providers must recognise the differing needs not only of those people who are currently injecting drugs, but also those who became infected through past drug misuse, and those who currently misuse drugs by whatever route who may have acquired HIV-infection through sexual behaviour.

1.8 It became apparent early in our work that there is barely any aspect of health or personal social service provision that will remain untouched by the large numbers of ill drug misusers who will present to services. All services currently caring for, or who may be called upon to care for people with AIDS will soon have drug misusing clients. This may well lead them to reassess the nature of the service they offer and the way in which it is delivered.

1.9 The service offered by specialist drug services today and in the future is radically changed by the advent of HIV-disease. In addition to their original function of providing help with drug misuse problems, drug services must now be able to provide help with AIDS-related problems. In chapter 5 we explain that staff in drug services should be aware of the symptoms of HIV-disease; should try to ensure that clients are receiving primary health care; should have an increased capacity to visit clients at home and in hospital; and should become involved in advising workers in other disciplines on the management of drug misusers. Where possible, drug services should offer medical examinations, and personal counselling on HIV-related matters.

1.10 In our Part 1 Report we outlined how services should endeavour to attract drug misusers. We said then that a pre-requisite of services is that staff should adopt a friendly, approachable and non-judgemental manner and this has been confirmed by all the evidence we have received. Negative attitudes on the part of staff will get in the way of effective service delivery, and do little to encourage attendance. In this report we go further than advising staff on their attitudes and approaches, and assign specific tasks and functions to services which are, or will be providing care for infected drug misusers.

1.11 It is clearly advantageous for individuals to receive medical care and counselling soon after they have been infected because the reduction of harmful behaviour and the early diagnosis of disease may favourably influence the progression of infection. However, there are also important public health benefits because good care and management of seropositive drug misusers contributes to preventing the spread of HIV-disease. We have concluded therefore 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 onward spread of infection.

1.12 For the most part, care for drug misusers with HIV-disease will and should be provided in the community. Most people prefer to be cared for in their home environment. Also, despite the high costs of community care, alternatives are usually impractical, inefficient, or even more expensive. In chapter 4 we highlight the issues which those providing care in the community need to consider, including the requirements of those who are informally caring for ill drug misusers. Components of care will include the provision of advice, counselling, and practical support, and will be required in varying degrees by misusers with HIV-disease and their carers.

1.13 Access to specialist medical care is vital. HIV-disease is insidious with symptoms which echo other disorders and can easily go unrecognised, particularly in injecting drug misusers. While GPs have responsibility for providing ongoing primary health care, all drug misusers with HIV-disease should have access to a physician who is experienced in treating HIV-disease. Shared care between GP and hospital consultant can achieve this. Integration between drug services and hospital services also becomes necessary as more drug misusers are hospitalised. These issues, and others relating to the management of drug misusers in hospitals, are discussed in chapter 6.

1.14 We devote a whole chapter of this report to the criminal justice system because it has a major part to play in ensuring that drug misusers with HIV-disease receive the help and care that they need. Many drug misusers — including a high proportion who have never sought help from treatment services — come into contact with the criminal justice system. The various elements of the system are therefore in a prime position to offer help, and to direct drug misusers to other services.

1.15 To some degree, the planning of future services for drug misusers with HIV-disease is hindered by a lack of information. In order to spend resources efficiently, service planners need to know the extent of HIV-infection among local drug misusers. Efforts must be made to provide more reliable epidemiological data on drug misuse, and on HIV infection among drug misusers.

1.16 Only by planning services in advance will resources be most effectively and rationally used. We have been dismayed to find that very little such planning has been taking place. In the UK we are in a relatively fortunate position. Our system of delivering primary health care is well developed, and AIDS is not yet endemic here. It would therefore be particularly regrettable if service planners and providers failed to make the most of this opportunity. If they continue to procrastinate and ignore the reality of HIV-infection among drug misusers, services will be ill-prepared to cope in a few years time.

1.17 Caring for drug misusers with HIV-disease will be expensive. We welcome the additional resources recently devoted to HIV prevention, care and treatment in England. Specific, earmarked, and in many cases additional resources will be necessary if our recommendations are to be implemented in full. Health and local authorities, the prison and probation services, and non-statutory agencies should all receive sufficient funds to enable them to plan and develop services for drug misusers with HIV-disease.