4 Care in the Community

4.1 Most people with symptomatic HIV-disease will experience episodes of acute illness which require in-patient hospital care. There will be long periods however when such care is not required, but when a range of services may be needed to help them live at home, or in homely accommodation in the community. Most ill people would prefer to remain at home if hospital-based care is not essential. Furthermore, US experience has shown that where community services are lacking, hospitals are faced with intolerable pressures as people who do not need the type and degree of care which they provide occupy beds which are needed to treat acutely ill people. Already in some areas of the UK, in-patient provision barely matches need; longer lengths of stay would intensify existing pressures. For the most part, care for drug misusers with HIV-disease will and should be provided in the community.

4.2 For a person in the later stages of HIV-disease the burden of care at home may, however, be considerable, and will usually be shouldered by the partner or a close relative. Drug misusers' partners may themselves be drug misusers, might also be seropositive, and may be unable to cope with the strain of caring day in day out without resorting to chaotic drug misuse. Alternatively, the carer may be a parent who already has a difficult relationship with their seropositive drug misusing child. "Informal" carers, who provide the bulk of care to people with HIV-disease, receive little or no training or reward yet can be subject to even greater pressures than paid staff. If care in the community is to be successful these people will need support and counselling, and will require regular relief from the strain of caring by the provision of day care, respite care and "buddies". Compared to the support provided by this main carer, other supports within the community, although intensive, play a subsidiary role. Care in the community will be very difficult where no "informal" carer exists, or where the carer has become ill or is otherwise unable to cope. We conclude that support is needed for the "informal" carers of drug misusers with HIV-disease.

4.3 Currently, the provision and organisation of many community services are being re-examined. Reviews into the NHS, primary health care, and residential care are underway or have recently been completed. The Government has not yet responded to the Griffiths Report on Community Care and we are awaiting publication of important studies on disabled people. The advent of the community charge will affect the funding of local authority services. Changes in social security regulations may have an impact on residential facilities for drug misusers. In this climate of change it would be foolish for us to seek to lay down prescriptive models of care. Instead, in this chapter we look at the contribution which will be needed from a range of services if community care for drug misusers is to be effectively provided. The role of specialist drug misuse services is separately considered in Chapter 5.

Segregation or Integration?

4.4 One of the decisions now facing those planning services for the future is whether they should develop separate facilities for drug misusers with HIV-disease, or should aim to address drug misusers' needs through services available to any person with HIV-disease. We have given much thought to this question, but do not have a clear-cut answer. To begin with, we believe services should be integrated, but it may be that the wishes of those using the services will dictate otherwise. Some drug misusers firmly believe that services which are specifically geared to drug misusers are best for them, while others may prefer general services. In the longer term, the need for different types of service will be determined according to local prevalence of HIV-disease and drug misuse, as well as the preferences of individuals. We therefore envisage that a variety of services will be needed. We return to this issue of segregation in the chapter on hospital services.

Housing Services

4.5 Adequate, secure, accommodation is central to the concept of care in the community. It can be difficult or impossible to deliver appropriate care to somebody who is homeless or in poor accommodation. Furthermore, the stress and inconvenience associated with homelessness or poor housing can in itself lead to physical and mental illness. It is therefore important that accommodation requirements are sorted out before people with HIV-disease become ill.

4.6 Unfortunately however, as we have already noted, drug misusers are more likely than other people with HIV-disease to be homeless or without adequate accommodation. There are also concentrations of infected drug misusers in the inner-cities where the shortage of housing is often most acute. Statutory housing is a particularly problematic area for drug misusers with HIV-disease. There are two main routes to statutory re-housing which stand any practical chance of overcoming the long delays which characterise the process of trying to find accommodation. One is medical priority, accompanied by residential qualification (usually 6-12 months on a local waiting list); the other is through "priority need" accompanied by association with the area under the Homeless Persons Act. It is readily apparent that both routes present difficulties for drug misusers with HIV-disease who are often also young and mobile. Even those who have been resident in one area for some years may be regarded as low priority for re-housing until they become ill. It may be particularly difficult to find accommodation for couples or families where a parent or partner is a current drug misuser. The "last resort" of many local authorities — the provision of bed and breakfast accommodation — is not remotely suitable for drug misusers with HIV-disease. We therefore commend those local authorities who are giving priority in re-housing to seropositive people.

4.7 These problems are not readily overcome, and in some parts of the country may seem almost insurmountable. But community care will be a cruel misnomer if ill people are left to fend for themselves in a community where they have nowhere to live. Rather than wait for the problem to grow, local authorities in conjunction with housing associations, non-statutory agencies and health authorities should now be looking for imaginative solutions in the provision of accommodation for drug misusers with HIV-disease, which might build upon best practice — and learn from worst practice — in providing community care to other groups. Advice should be taken from specialist drug services on the particular needs of those who continue to misuse drugs. Plans should take account of the needs of couples and families as well as single people.

4.8 Housing should, where possible, be on one level; close to support services, shops, and transport; warm; dry and hygienic; and provided with washing, cooking and laundry facilities and a toilet. Hostel provision or shared housing may suit some people well, but not others. There may be problems in mixing current and ex-drug misusers within a shared living environment; specialist drug services should be given an active role in planning any such provision.

4.9 Finally, there can be circumstances whereby unsuitable housing can be rendered adequate once adaptations have been made. We have heard that in some areas the demand for adaptations is so great that cases are dealt with on a first-come first-served basis. This system means that everyone who has requested an adaptation has to wait for the same length of time before being served. While we understand why this situation has arisen, it is extremely unsatisfactory for people with HIV-disease who might have only a short time to live. We recommend that social services and housing departments treat as urgent requests by symptomatic people with HIV-disease when assessing priorities for the provision of equipment and adaptations to peoples' homes.

Day Support and Respite Care

4.10 In view of the poor housing situation of many drug misusers, day support and respite care take on great significance. Day care centres can act as a focal point for a number of services including the provision of food and drink, warmth, counselling, social support, assistance with domestic laundry, and medical treatment. However, most current day care provision is for elderly people and little is available specifically for drug misusers.

4.11 We see a particular need for new day care centres for drug misusers with HIV-disease to be established in areas with a high prevalance of drug misuse. Centres could be community-based or hospital-based, but either way should be run by a multi-disciplinary staff (including both drug and HIV-specialists). Consideration should be given to the location of day centres, as it is important that they are easily accessible. Transport to and fro, and child care facilities may be needed by some clients. In some cases, existing drug services may be able to expand to provide a day care centre, but this would not be possible for the majority. Many current drug misusers might prefer a day centre that catered specifically for them, but some ex-users may find it difficult to mix with current misusers, and would prefer to share provision with other people with HIV-disease. New organisations such as Landmark and London Lighthouse offer day support for people with HIV-disease, including drug misusers and ex-users. As the number of people with HIV-disease grows, there will need to be an expansion of this type of facility, building on the lessons of these early models.

4.12 Respite care is short-term residential care. It is necessary when self-care becomes temporarily impossible, or when a carer needs a break. We recommend that social services departments, health authorities and non-statutory agencies should collectively consider the provision of day care and respite care for current and ex-drug misusers with HIV-disease. Special attention should be paid to the needs of drug misusers caring for children.

Health Care

The General Practitioner
4.13 The key provider of health care in the community is the general practitioner, often working in collaboration with a primary health care team. Everybody is entitled to receive primary health care from a general practitioner but many drug misusers do not receive even this, let alone help with their drug problem. GPs' involvement in the treatment of drug misuse is limited. Many family doctors have received little or no training in this area and feel ill-equipped to take on this role. However, as we have noted, it is vitally important that people with HIV-disease should have access to health monitoring and early treatment of health care problems. If GPs are to provide this monitoring and care for drug misusers with HIV-disease then it is highly desirable for them to also provide help with drug misuse problems. This would have the effect of encouraging asymptomatic drug misusers to register with GPs and promote regular contact.

4.14 In our Part 1 report we advocated that all GPs should provide care and advice to drug misusers, and that clinical attachments to local specialist drug services should be actively encouraged. The Advisory Council has on many occasions emphasised the need for GP involvement with drug misusers. We welcome the initiatives which have been taken by the Health Departments, the Royal College of General Practitioners and the General Medical Services Committees of the British Medical Association to encourage involvement, but regret that progress has been patchy and slow.

4.15 Yet GPs can provide very effective care for drug misusers. Evidence from Edinburgh has provided examples of patients whose health has considerably improved and risky behaviour reduced. However, they can be time-consuming, needing frequent and long consultations — one study indicated that they made an average of 32 visits to their GP per year. Many GPs also have fears about being overwhelmed by demand if they open their gates to this client group, and these worries will not be overcome unless the burden is more equitably shared and a substantial proportion of GPs begin to offer treatment. Action is needed quickly to involve GPs with the growing number of asymptomatic seropositive drug misusers. It is important that GPs, who may be providing terminal care for these patients, build up a relationship of trust with them before they become ill.

4.16 We have concluded that a working party should be set up to consider urgently how GP involvement with drug misusers can be increased; and in particular to consider the desirability and practicability of offering financial or other incentives to GPs in respect of the treatment of drug misuse, following approved training.

4.17 Some people with HIV-disease have said that they would prefer their health to be monitored by hospital physicians with experience of treating HIV-disease, rather than GPs who may have no specialist training in this area. We believe, however, that people with symptomatic HIV-disease would be well advised to involve their GPs in their care. Also, if hospitals keep the care of HIV-disease to themselves, GPs will not get the opportunity to develop expertise in this field. Further, as more people become ill with HIV-disease, hospitals will not be able to provide general health care for them all. While the individual should have as much choice as possible over where he or she receives treatment, it seems that GPs will be best placed to offer continuing medical care. We therefore recommend that all GPs should accept their responsibility for the ongoing health care of drug misusers with HIV-disease. Where possible, shared care systems should be developed so that GPs and physicians with experience of treating HIV-disease combine to monitor the health of these patients.

4.18 Additionally, the development of specialist home care teams may be valuable, particularly in areas of high HIV prevalence where the burden on primary health care teams may become overwhelming. Such home care teams would be hospital-based, reaching out into the community and the aim would be to supplement rather than supplant the primary care services, and to provide a source of expertise which could be called upon.

Community Nurses
4.19 Community nurses deliver a range of care to people in their own homes. Their skills and methods of working are ideally suited to providing care to drug misusers with HIV-disease. In many areas, district nurses are already looking after people with HIV-disease, although few have had experience of working with infected drug misusers. Community psychiatric nurses are often involved with drug problems, frequently as part of a multi-disciplinary specialist drug service such as a community drug team. They will become increasingly involved with people with HIV-disease who experience psychological and psychiatric problems, including dementia. There will be a growing role for health visitors and midwives in supporting HIV-infected mothers and their babies; for the foreseeable future, the great majority of these mothers will be ex or current drug misusers, or the partners of drug misusers.

4.20 In some areas new specialist nurses for people with HIV-disease have been appointed. These nurses rapidly develop expertise and have already demonstrated their value both directly to patients and in the training and support of other community nurses. One disadvantage of such specialised nurses is that they tend to get known within a community and this may jeopardise confidentially, particularly in small and rural areas. In spite of this, we would see a role for such nurses in the immediate future for the care of drug misusers with HIV-disease, but the rapid increase in HIV prevalence dictates that in the future all district nurses, community psyschiatric nurses, midwives and health visitors will need to develop skills in this area.

4.21 As understanding of HIV-disease is constantly growing, and as some drug misusers have special needs which can only be met by a combination of services, it is especially important that community nurses who are caring for this client group have frequent and efficient communication with GPs and other members of the primary health care team.

4.22 We are concerned that there are already too few nurses to meet demand. Yet pressures will intensify as more mentally ill and mentally handicapped people are discharged into the community in line with health authority plans, and as the numbers of elderly people requiring support increase. If, as we believe, people with HIV-infection will have most of their care provided in the community, the additional demands on community nurses for care of both physical and psychiatric illness will be considerable. It is therefore essential that additional nursing staff are recruited. We recommend that vigorous efforts are made to increase the number of community nurses in training, and that flexible working practices be adopted to retain and attract older nurses and those with family conunitments.

Dentists
4.23 Drug misusers have always had difficulty in finding sympathetic dentists who are willing to provide treatment. The advent of AIDS has made the situation worse still. All dentists should be prepared to treat people with HIV-infection; simple protective measures are enough to protect the dentist from infection, and instruments used should always be sterilised regardless of whether a patient is know to have an infectious disease.

Social Workers
4.24 While some Social Services Departments have proved eager to involve themselves in planning and delivering services for people with HIV-disease, few have addressed the specific needs of seropositive and ill drug misusers. Notable exceptions include Strathclyde and Lothian Regional Councils and some London Boroughs who have taken a commendable lead in addressing the needs of this group.

4.25 Drug misusers are often concentrated in areas of social deprivation — areas which tend to present local Social Services Departments with particularly heavy demands. Where there are many conflicting pressures for resources, drug misusers are often seen as a low priority. In these circumstances, special posts which enable social workers to concentrate on drug misusers can be invaluable. For example, Westminster City Council has appointed a social worker to provide a service particularly to drug misusers at risk of HIV-infection or who have HIV-disease. Such a person would be in a prime position to act as a liaison officer with other services, and to help other professionals to understand the particular needs of drug misusers with HIV-disease. In areas with a high prevalence of drug misuse, specialist social work posts should be established in the field of drug misuse. In the longer term, efforts should be made to disseminate knowledge about drug misuse and HIV-disease throughout Social Services Departments. Secondments of generic social workers to specialist drug agencies, including non-statutory organisations, can be of great value both for the provision of services and for training purposes.

Domiciliary care
4.26 This ranges from the traditional services provided by home helps — assistance with shopping, provision of food, laundry, housework, and practical tasks around the home — to the more personal care provided by some specially trained workers which can include washing and dressing the client, and helping him or her with the administration of medicine. The importance of this practical help should not be underestimated. Domiciliary carers can make a huge impact on the quality of life of their clients. Companionship is also a valuable aspect of the service provided as many home helps befriend their clients. Domiciliary care is provided by social services departments, although in some areas non-statutory services can also become involved.

4.27 The great majority of people who received a domiciliary care service are elderly. Although home helps are also provided for younger disabled people, for the most part home helps are unused to working with young, terminally ill clients. Nonetheless, we have heard encouraging evidence about domiciliary care services for people with HIV-disease in the London Borough of Hammersmith and Fulham which demonstrated how well some home helps can adapt to this new client group when given training and support.

"Buddies"
4.28 Buddies are volunteer befrienders and advocates who provide support, companionship and practical help to people with HIV-disease on a one-to-one basis. They need to have good listening skills and an ability to talk without discomfort about subjects which their friend wishes to discuss — which might include loneliness, fear of illness, and death. The nature of the service provided by the buddy varies from person to person, but generally will involve at least one meeting a week in the early stages of HIV-disease , and up to 3 or 4 meetings a week when illness supervenes. Buddies can provide an invaluable service for people with HIV-disease, particularly in areas where other services are scarce and where a buddy might be the major source of day support. They can also provide much-needed support, help and friendship to "informal" carers.

4.29 Organisations such as the Terrence Higgins Trust and the Scottish AIDS Monitor train and assign buddies. Both these agencies have a policy of training buddies to provide a service to any person with HIV-disease. All prospective buddies therefore receive training about drug misuse. While there are good reasons for not having separate "types" of buddy, ex-users may be particularly understanding and effective as buddies to drug misusers. It can be especially difficult to befriend people who have no stable home base or ordered lifestyle. In these circumstances, workers at a drop-in centre may be able to provide buddy-type support from a base where a drug misuser can know that help will be available. Workers in the non-statutory sector, who have a long tradition in and experience of informal work with drug users, are well placed to offer befriending and advocacy support.

Support Groups
4.30 Mutual support and self-help groups have proved themselves to be of great value to some drug misusers with HIV-disease as a source of emotional support and encouragement; a focus for disseminating information about practical help; and an environment where people need not feel isolated and subject to prejudice and judgemental attitudes.

4.31 Participation in a support group is a personal matter. Members will not be able to give voice to their feelings unless they feel comfortable in the group. Some people will not want this form of support at all. Others may feel happiest in a group of women only, or ex-users, or current users. Some may welcome an outside facilitator from a specialist service; others may prefer someone who is an ex-user, or antibody positive. On a practical level, transport and child-care facilities may be needed to enable some people to attend. Existing support groups specifically for drug misusers include those set up under the auspices of the Terrence Higgins Trust, and Mainliners (both in London). "Positively Women" is a support group for women, the majority of whom acquired the infection through injecting drug misuse.

4.32 Funding agencies have tended to see support groups as "voluntary" organisations which are self-financing insofar as they incur costs at all. Instead they should be seen as a mainstay of emotional support for people with HIV-disease — as indeed for people with other illnesses — and funded accordingly. Funding agencies should recognise the ancillary costs incurred by support groups which may include travel and telephone costs by participants; overheads for premises; and possibly payment to regular "facilitators". Where possible, both statutory and non-statutory agencies should make suitable premises available to such groups on a secure, regular basis.