Ethical dilemmas in professional practice in anthropology

Policy - environment - development

Worked example 1: HIV/AIDS in Lothian

Conflicting demands and scarce resources -Planning services for people with HIV/AIDS in Lothian

by Guro Huby

This paper introduces the case study and outlines the context and competing demands on scarce resources.

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The case study is designed to consider how research can contribute to the planning and prioritising of services for populations with diverse needs and conflicting demands. The aim of service planning is to ensure that available resources are distributed both fairly and equitably. This is a difficult task at the best of times. There are diverging views as to what the ‘needs’ of a population are, and different research methodologies also produce different pictures of ‘need’.

In the current financial climate, service planning is made more difficult by cuts in funding. One planner said:

There is no longer any ‘slack’ in the system. If you suggest one service should be funded, you have to say which other service should be cut.

Can research then help planners make best use of scarce resources to meet needs? This particular example refers to services for people with HIV/AIDS in Lothian and the region where Edinburgh is the main city, Scotland. The issues the case study raises were current when it was designed in 1994 and were relevant to the field of HIV in Lothian. Professionals and service users of various backgrounds were grappling with these problems in their daily practice. This briefing paper gives a short description of the history and current situation of the spread of HIV in Edinburgh and the services developed to meet the needs of people. Please take note of the acronyms of services and committees. This will help you make more sense of the case study.

HIV/AIDS in Lothian

1. History of HIV in Lothian and Edinburgh
HIV reached Lothian in the mid 1970s and initially affected the population of homosexual men. The spread among this group was slow and was given a low profile. In contrast, the sudden and dramatic discovery of an epidemic of HIV among intravenous drug users (50% of younger age groups in certain areas of Edinburgh) has been given considerable publicity and attention. It sparked off a rapid development of services in response to an expected swift rise in the number of people infected and affected by HIV and people with serious and terminal AIDS disease. Prevention work was also stepped up.

The classification of people with HIV into ‘interest’ groups (by both users and providers of services) reflects this history of transmission.

2. Services: Treatment and Care
Hospital-centred service systems
Treatment and support services for people with HIV have developed around hospital specialist departments. The biggest hospital unit in terms of the number of HIV-dedicated staff, and also the number of patients with HIV, is the X Hospital Infectious Diseases Unit. Most people with HIV using this facility are drug users.

The Department of Genito-Urinary Medicine (GUM) is traditionally used by gay men as a confidential and high-quality medical service. Some of these men have become infected with HIV and the GUM has developed a service for the management of HIV.

GPs and primary care teams seem to take on a somewhat peripheral role in the treatment of people’s HIV infection.

Clinical management of HIV infection has made advances during the 20 + years that the disease has been known. Although no cure for HIV exists, it is now possible to slow down the deterioration in patients’ immune systems. Clinical management of diseases which develop as the immune system weakens has also improved. Lately, drug trials involving a combination of different drugs to stem the breakdown of the immune system have yielded results which are very encouraging and for which doctors specialising in HIV hold great hopes. It is expected that these drugs will improve both life expectancy and the quality of life of infected people but they are very costly.

Social care
Lothian Social Work Department has a policy of integrating HIV work with generic work. However, the Department also runs some specialist services for people with HIV.

For the majority of people with HIV in Edinburgh welfare rights services are vital. As people become ill, they need help to apply for extra sickness and invalidity grants to which they are entitled. For many, the state welfare system is their only or basic source of income.

The voluntary sector
A number of voluntary agencies were funded to provide community outreach support and prevention for people with HIV or at risk of infection. Drug users, sex workers and ‘gay men’ were particularly targeted. Milestone, the hospice offering respite and terminal care for people with HIV is a voluntary sector initiative.

Prevention of HIV
Prevention of HIV has taken place through public campaigns, through education in schools, through outreach work among ‘younger gay men’ and young women.

Management of drug use
An important part of Lothian’s response to the discovery of an HIV epidemic among drug users has been the development of substitute prescribing for injecting heroin users. The most important substitute for heroin is methadone, which is taken orally. It is prescribed by GPs and some hospital departments. Needle exchange is available to drug users still injecting in order to prevent needle sharing (a medium of infection in intravenous drug users).

3. Planning and development of services
An Integrated planning structure
In Lothian, there have been concerted efforts at strategic planning of services. A local authority appointed AIDS co-ordinator took the initiative to establish an integrated and co-ordinated planning structure which includes voluntary and statutory health and social services in a Lothian HIV/AIDS Forum (LHAF) which meets regularly. The discussions in this forum feed into a management team with representatives from all sectors (HIV/AIDS Management Team - HAMT).

Decisions about priorities in funding and service development are made in this HAMT group which makes recommendations to the health board and local authority for funding. More important in terms of decision-making are the HIV/AIDS Advisory Committees (HADSAC) which consist of the local health authority commissioning team and service provider advisors, and the Purchasing Advisory Group (PAG) which consists of health authority and local authority representatives.

Changes in funding
The funding and development of services is currently being affected by changes in three areas:

  • The NHS internal market with the local health authority (Health Board in Scotland) ‘purchasing’ services from voluntary agencies and hospital health services.
  • Local authority reorganisation. Regions have disappeared and local districts have taken over the functions of Regions. Lothian Region is being divided into four districts: East, Mid, and West Lothian and Edinburgh. Some services funded on a regional basis are being cut because no district can afford to fund them and there is no agreement between districts to share the funding.
  • End of ‘ringfencing’ of AIDS money. Up until now, AIDS money has been ‘ringfenced’, but from now on many AIDS services will have to compete with other services for a general ‘pot’ of money. ‘Efficiency savings’ of around 3% per year have to be made in AIDS services as in other services.

4. The planners’ dilemma
A ‘pressure group’ made up of some users and representatives from voluntary organisations specialising in the care for people with HIV has formed which argues that the needs of people with HIV are not being met within the existing service system. HADSAC and PAG have to make decisions about funding within drastically reduced budgets and have to weigh up the demands against resources available.

5. How can research help?
HADSAC has obtained research money from the health board for a study of needs among people with HIV to help make decisions on a sound research basis.