7 Planning, Co-ordination and Liaison

7.1 As earlier chapters have made clear, drug misusers with HIV-disease may well need help from a wide range of statutory and non-statutory services over a period of many years. The difficulties of ensuring that needs are always met by the right service at the right time are formidable. For a variety of reasons we have identified, drug misusers often have worse access to services than other people. Furthermore, joint planning across and within a range of services — which rarely serve populations within the same geographical boundaries — is time-consuming and complex even when relationships are good, and sometimes they are not. Agencies operating within cash-limits are rarely able to offer optimum care to all those who seek it — services are rationed either through the application of waiting lists, or through total non-availability to some clients. To compound these difficulties, the organisation and funding structures of many key statutory services are currently under national review. Possibly of most potential significance is the recent report on community care by Sir Roy Griffiths, which has as a central recommendation that local authorities should have budgetary and managerial responsibility for arranging and co-ordinating `packages' of community care for individuals, drawing upon private, statutory and voluntary sector resources as appropriate. If accepted by the Government, this report will have major implications for the future delivery of community-based services.

7.2 Clearly we cannot offer a simple model of co-ordinated care which will overcome all these problems, and be applicable to all local circumstances. Instead, we propose some basic principles which should guide planners and managers in the development and co-ordination of services for drug misusers with HIV-disease.

Planning Services

7.3 From the evidence we have received, it appears that there is very little focused planning of services for drug misusers with HIV-disease. And yet one of the clearest messages to emerge from international experience is that services must be developed in advance of an epidemic; complacency, or denial, can result in inadequate and ill-thought-out panic measures when it later becomes imperative to act.

7.4 One of the difficulties facing planners is that drug misuse is an illicit, often secret activity, and HIV-infection too may be hidden for many years until the infected person has an antibody test, or becomes clinically ill. It is very difficult therefore to make an assessment of the extent of HIV-infection among drug misusers in a locality; estimating the future numbers is still more problematic. Nonetheless, it is important that the best possible assessment is made, and regularly reviewed. Health authorities should ensure that the information available to them on the incidence of HIV-infection and illness is made widely available to other service providers through extensive dissemination of the reports they are required to compile annually under the terms of the AIDS (Control) Act 1987. Additionally, District Drug Advisory Committees should annually estimate the scale and nature of drug misuse locally to inform strategies for the prevention of HIV-infection among drug misusers, and the care of those who become infected.

7.5 We have heard that in Districts where there is an active Drug Advisory Committee there may be good planning of services for drug misusers, and in most areas now machinery exists for planning services for people with HIV-disease. However, we have been dismayed to discover that frequently the latter does not address the needs of drug misusers, and in most cases liaison between `drugs' and `AIDS' committees is inadequate or non-existent. Only by planning services in advance will resources be most effectively and rationally used. It is vital that responsibility for both prevention and service provision is clearly assigned. We commend a model which is operating in some parts of Scotland whereby a fora have been set up with representatives of all services which may be involved in providing care for people with HIV-disease. These fora devise locally tailored strategies to limit the spread of HIV-disease and to provide services to those who have acquired it. In England, the contribution of Regional Drug Advisory Committees and Regional Drug Problem Teams may be valuable in formulating overall joint policies within a Region. Statutory and non-statutory services should, based upon the best assessment of the scale of the local problem, address the current and future needs of drug misusers with HIV-disease and identify what future service provision should meet those needs, and how. Planning should take place either through existing machinery — ensuring adequate representation of non-statutory services, family practitioner services, and drug specialist expertise — or throughn specially created fora. AIDS Advisory Committees may be suitable for this purpose, provided that they include members with expertise in the field of drug misuse.

7.6 Responsibility for the availability of services should be clearly defined. While a wide range of agencies will be involved, we recommend that a nominated individual in a health authority be held accountable to the District General Manager for ensuring that services are in place to meet medical needs, including help and treatment for drug problems. We also recommend that a nominated individual in a Social Services Department be held accountable to the Director of Social Services for ensuring that services are in place to meet community care needs. These two service co-ordinators should also ensure that information on services is available in a readily accessible form to all those who may come into contact with drug misusers.

Delivering Care to the Individual

7.7 Even if all the necessary services are in place it can be difficult to ensure that an individual has access to them at a time when s/he needs them, particularly as needs change over time. Drug misusers with HIV-disease may not be in contact with any single service throughout the full course of their becoming infected and ill. Ideally, some continuity of help and support will be maintained, as we discuss below, but often it may not. It is therefore essential that drug misusers should not at any time lose contact or `fall between' services. We have identified a number of key points at which services should take on an active coordinating role, and ensure that clients' needs are assessed, and that services are explicitly allocated responsibility for meeting those needs.

7.8 One of the most important of these is upon diagnosis as seropositive, or first presentation to services. Drug misusers may be tested for antibodies at a specialist drug service, a hospital clinic or a GP surgery, or they may present to any of these services or others when showing symptoms of HIV-disease. When a drug misuser is first diagnosed as seropositive, or first presents to a service, whatever service is involved should take responsibility for ensuring — where appropriate and with the agreement of the client — that the client gains access to specialist counselling; primary health care; specialist drug services; and specialist health monitoring for HIV-disease at regular intervals. Some services, such as GUM clinics or GPs may be unused to making these arrangements. But, given many drug misusers' reluctance to present to services, it is essential that the opportunity is seized when they do present to introduce them to other services, explain the benefits of attending, and make arrangements for attendance. It is apparent that there are great advantages in having as many of these services as possible combined on the same site. Some specialist drug services and GUM clinics have found that an escort or special transport can be helpful if clients must move between services. On follow-up visits to whichever service is approached, the attempt should be repeated to facilitate and encourage contact with appropriate helping agencies.

7.9 At this time, during misusers may also have problems with housing, social security benefits, child-care, or other practical difficulties. These matters can be time-consuming and frustrating to try and resolve. Establishing links with an advice agency such as the Citizens Advice Bureaux may prove helpful. A specialist drug service, or any other service seeing significant numbers of drug misusers with HIV-disease may well find it worthwhile to employ a `welfare rights' worker on a full-time or sessional basis. Otherwise, people whose skills are in medical care or counselling may well spend inordinate periods of time on the telephone to Housing Departments and social security offices.

7.10 Elsewhere in the report we have identified other key points where continuity must be ensured, including upon leaving residential rehabilitation (5.22); upon discharge from hospital treatment (6.19); when a mother and baby leave an obstetric ward (6.23); and on release from prison (8.11).

Continuity of Care

7.11 It can be reassuring for a person with HIV-disease to maintain contact with one individual or service throughout the course of infection and illness, who will act as an advocate in obtaining services, and as a reference point when it is unclear who to turn to. Sometimes this situation will arise informally if a good relationship is established between a drug misuser and a specialist drugs service, or the doctor who is providing regular monitoring and health care. But few individuals will have the knowledge or the time to co-ordinate service provision for drug misusers at every stage of HIV-disease, even without the practical difficulties of maintaining contact over a period of up to several years.

7.12 A more formal way of trying to establish continuity would be to adopt a `case manager' approach, whereby each client would be able to seek help from a named individual within a service who would be responsible for ensuring that a drug misuser receives the service s/he needs at every stage of HIV-disease. Such a case manager would first need a good knowledge of local services andn service providers. The case manager concept will only work effectively if supported by service providers, who are unlikely to accede to requests for help unless they acknowledge the interest and authority of the case manager. Secondly, the case manager would need to be accepted and trusted by drug misusers, some of whom might be suspicious of anything akin to an allocated social worker with its perceived overtones of control and surveillance. Thirdly, the case manager must have an understanding of HIV-disease and its implications. A person with these three qualities who has responsibility for coordinating help to drug misusers throughout the course of HIV-disease, and who will act as an advocate for that person, can provide an effective means of ensuring that the right services meet needs as and when they arise. Some local authorities are making social work appointments of this nature; the role might also be taken on by health authority-based AIDS counsellors, GPs, or a member of the community drugs team.

Maintaining Contact

7.13 Staff rarely consider what they would do if a client fails to turn up for future appointments, and yet, as we have pointed out, it is often difficult for drug misusers to keep appointments. It is much better to agree in advance with the client what should happen in these circumstances than to wait for the situation to arise. When a client is tested he or she should be asked whether they would wish a member of staff to try and trace them if they fail to return for the test result. Similarly, when a client is informed that he or she is seropositive, and when they first present to any service, it should be explained that it is very much in their interest to receive proper, regular health monitoring and any necessary treatment, and that unless they have any objections a member of staff will try and trace them if they lose contact with the service. If they specifically state that they do not want to be followed-up, then staff should respect that wish. Most clients, however, will be pleased that staff are so concerned with their welfare. While not under-estimating the practical difficulties and resource implications of so doing, on balance we believe the benefits to individual and public health require contact to be maintained with seropositive drug misusers as far as possible, and that it is good practice to follow-up those who default from services unless they specifically request otherwise.