PII:
Soc. Sci. Med. Vol. 47, No. 9, pp. 1197±1208, 1998
Crown copyright # 1998 Published by Elsevier Science Ltd. All rights reserved
Printed in Great Britain
S0277-9536(97)10020-X
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A TALE OF TWO (LOW PREVALENCE) CITIES: SOCIAL
MOVEMENT ORGANISATIONS AND THE LOCAL POLICY
RESPONSE TO HIV/AIDS*
ROLAND PETCHEY,1{ JACKY WILLIAMS,1 BILL FARNSWORTH1 and
KEN STARKEY2
Department of General Practice, University of Nottingham, University Park, Nottingham NG7 2RD,
U.K. and 2School of Finance and Management, University of Nottingham, University Park,
Nottingham NG7 2RD, U.K.
1
AbstractÐIn the ®eld of HIV/AIDS, social movement organisations (SMOs) have been identi®ed as
powerful potential catalysts for change through their impact on formal organisational structures and
the policy process. In addition, they have the capacity to be important providers of services in their
own right, through the community resources they are capable of mobilising. In the United Kingdom,
however, their role in policy formation is disputed. Previous studies have concluded that they have
been most in¯uential at national policy and ward level. At the level of local policy making, their in¯uence has been found to be patchy and con®ned largely to securing recognition of HIV as an issue.
Most previous research has, however, been conducted in high prevalence, metropolitan settings with
functional SMOs. This paper presents the results of a comparative case study of two neighbouring provincial low prevalence district health authorities (HAs) in England. We describe the changing national
policy context from 1986 to 1995 and use a strategic change model to analyse the local development of
care and treatment services for people with HIV/AIDS, in particular the relationship between SMOs
and HAs. Despite being demographically, socioeconomically and epidemiologically similar, and sharing
an identical national policy framework, the two districts demonstrate completely divergent organisational responses to the HIV/AIDS epidemic. We conclude that the level of prior social movement mobilisation and the degree of receptivity for change within the HA are the key variables for explaining
variations in the scale of strategic change observed in the two districts. Crown copyright # 1998
Published by Elsevier Science Ltd. All rights reserved
Key wordsÐHIV/AIDS, health policy, social movement organisations, strategic change
*Although for reasons of brevity and simplicity, the title
of this paper refers to HIV/AIDS policy, we must
emphasise the fact that our principal concern is with
policy a€ecting speci®cally the development of care
and treatment services for people with HIV/AIDS, and
the role of SMOs in it. In the U.K., the national policy
response to HIV/AIDS has been a dual one, consisting
of service provision for those already infected or
a€ected by HIV, alongside a health promotion/education o€ensive to limit the spread of infection. While
the distinction between treatment and prevention is
conceptually clear (and, indeed, is enshrined in separate funding allocations), in practice it is dicult to
maintain it with any consistency, not least because the
two functions have commonly been combined organisationally (especially in SMOs). Nevertheless, the conceptual distinction is worth retaining, since it keeps
open the logical possibility that the local response in
each of the two areas of HIV/AIDS policy might vary.
District A was just such a case. Our characterisation of
it as non-innovative applies only to its policy regarding
the development of care and treatment services. In prevention policy it demonstrated a high degree of innovation. It pioneered a range of extremely innovative
prevention initiatives including an outreach health promotion scheme for women sex-workers (`Prostitute
Outreach').
{Author for correspondence.
It is salutary to consider that had HIV emerged only a
decade or two earlier this century, there would have been
only the most fragile institutional framework from which
to have launched health promotion and education, since
the notion of community was never part of homosexual
identity, which was highly individualistic and could not
conceive of notions of `community' or similar social and
political claims which are so characteristic of lesbian and
gay culture and identity today. (Watney, 1993, p. 17)
INTRODUCTION
The proliferation of terminology around voluntary organisations providing HIV/AIDS services
testi®es to the elusiveness of their essential qualities.
Weeks et al. (1994) list three variants: Community
Based Organisations (CBOs), AIDS Service
Organisations (ASOs) and Non Governmental
Organisations (NGOs). Altman (1994) contributes
Groups Outside Government (GOGs) and Private
Voluntary Organisations (PVOs) to the alphabet
soup. All of these descriptions are partial, none is
entirely satisfactory. For instance, the concept of
the CBO reproduces the theoretical confusion sur-
1197
1198
Roland Petchey et al.
rounding the concept of community itself, while the
concept of the PVO detracts from the importance
(in the English policy context, at least) of public
funding and the role of paid sta€. As Weeks et al.
(1994) observe, this terminological confusion re¯ects
the diversity and historic variability of HIV/AIDS
organisations due to internal processes of organisational evolution (their `natural history'), as well as
changes in their environment as the role of the
voluntary sector and the relationship between statutory and voluntary agencies have altered in response to government policy. We have preferred to
adopt the Social Movement Organisation (SMO) as
our unit of analysis, a preference which we justify
on three main grounds. First, it problematises the
relationship between SMOs and the social movements from which they originated; second, it o€ers
a developmental theory of SMOs (even though the
dynamic of their development is contested); third, it
focuses on the internal organisational consequences
for SMOs of their interaction with formal organisations and state agencies. We are, however, aware
that it too is partial: we have endeavoured to use it
as a source of questions rather than of answers.
A social movement has been de®ned as:
a set of opinions and beliefs in a population which represents preferences for changing some elements of the
social structure and/or reward distribution of a society
(McCarthy and Zald, 1976, pp. 1217±1218).
Social movement organisations (SMOs) are the
organisational expression of social movements, and
it is argued that they constitute organisationally
and ideologically distinct forms of organisation
(Scott, 1990). Typically, they are characterised by:
a€ectivity (with consciousness raising, group
therapy techniques and concern for the quality of
relationships tending to be prioritised over instrumentality); direct linkage between personal experience and collective action (`the personal is the
political'); and preferences for loose structures over
hierarchy and for informal relations over bureaucracy. However, the extent of their desire or capacity
to engage in the formal policy process has been disputed. Some theorists (e.g. Touraine, 1981) have
stressed their essentially `alternative ` or `oppositionist' character. Others (e.g. McCarthy and Zald,
1976) more pessimistically posit a universal tendency towards the increasing bureaucratisation, formalisation and professionalisation of SMOs.
In the ®eld of HIV/AIDS (as in health service settings generally) SMOs perform a dual role. On the
one hand, they are potentially important providers
of services in their own right, through the community resources they are capable of mobilising. They
have also been identi®ed as powerful potential catalysts for change, through their capacity to bring
high levels of personal commitment and radical perspectives to bear on formal organisational structures and the policy process (Ferlie and Bennett,
1992). In San Francisco and New York in the
1980s, SMOs were found to have played a key role
in the development of policy as well as the provision of HIV/AIDS services through their impact
on formal funding and service provider organizations (Arno, 1986; Perrow and Guillen, 1990). In
the U.K., however, their role in policy formation is
disputed. Moerkerk (1990) and Pollak (1992)
characterise U.K. policy making as essentially top±
down and determined by the political priorities of
the government of the day, with SMOs fragmented
and excluded from the policy process. Fox et al.
(1989) similarly emphasise the accommodation of
SMOs and play down the impact of the gay lobby
on national policy. In contrast, Berridge and Strong
(1992) stress the role of the voluntary sector in
national and local policy formation at least up to
1986 (although Berridge has more recently
(Berridge, 1995) emphasised the subsequent resurgence of medical professional values with a corresponding decrease in the in¯uence of SMOs).
A case study of two London districts found the
role of SMOs to be less evident than had been
expected. It concluded that at national policy level
and at the level of the immediate service provider/
user interface (especially on issues such as regime
which were not resource-sensitive), SMOs such as
the Terence Higgins Trust were `surprisingly in¯uential'. At the intermediate level, however, of in¯uence on local policy, they appeared much less
e€ective (Pettigrew et al., 1992). In health authority
settings outside London SMOs were found to have
made an important contribution to shaping the
local response to HIV/AIDS, but even here their
role was largely con®ned to the early phase of
securing recognition of HIV/AIDS as an issue
(Bennett and Ferlie, 1994).
At the same time as being agents (whether in service delivery or in the policy process), SMOs are, of
course, also themselves acted upon. In the early
1990s they were exposed to three major changes of
policy a€ecting the context in which they were functioning. By the early 1990s, HIV/AIDS was beginning to slip down the policy agenda as it became
apparent that earlier projections of an exponential
growth of the epidemic (DHSS, 1988b) were inaccurate (PHLS, 1990). The NHS reforms (NHS and
Community Care Act, 1991) contributed to this
process by focusing managerial attention on reorganisation, and the purchaser±provider split was also
beginning to impact directly on the planning, coordination and delivery of services. A highly critical
National Audit Oce report on the funding and organisation of HIV services (National Audit Oce,
1991) and the implementation of the Charities Act
(1992) resulted in the tightening of the ®nancial and
legal regulatory framework within which voluntary
organisations were operating and the imposition of
greater accountability and a more professional managerial ethos on them. Finally, the implementation
Social movement organisations and HIV/AIDS
of the NHS reforms ushered in a `contract culture,'
which has been seen as contributing to the increasing `formalisation' of voluntary/statutory sector relations (Lewis, 1993).
Three characteristics of previous case studies of
SMOs operating in the ®eld of HIV/AIDS are noteworthy. First, almost all of the detailed research
has been conducted in high prevalence (usually
metropolitan) districts (New York, San Francisco,
London); low prevalence, provincial settings have
been largely disregarded. This metropolitan bias is
apparent in HIV/AIDS research generally. As
Berridge (1996, p. 287) has observed, in the U.K.
HIV/AIDS has essentially been a `tale of three
cities'. Second, the existence of solidary social
movements and functional SMOs has tended to be
taken as a given. The solidarity of the gay community, the nature of gay identity and of gay activism
and the relationship between it and HIV/AIDS activism have generally been regarded as unproblematic. There are a few exceptions: changes over
time in gay identity have been identi®ed (Watney,
1993) as have intergenerational and subcultural
di€erences in gay men's experience of and response
to HIV (King, 1995). Similarly, Bailey (1995) has
problematised the gay constituency for HIV prevention, while Weeks et al. (1994) have drawn attention
to the tension between generalist service provision
and the targetting of resources on areas of greatest
need, especially among gay men. Carricabura and
Pierret (1995) have explored the relationship betwen
gay identity and the response to HIV, but this
study too was carried out in a high prevalence
metropolitan setting (Paris) and treats gay identity
as unproblematic. Otherwise, the organisational implications of such internal divisions have remained
unexplored.
Finally, previous studies of HIV/AIDS SMOs
have paid little attention to variations in prevalence
and their implications for SMO survival. This is
striking, since a priori it would appear to be a
highly signi®cant variable for organisational development and stability. The viability of HIV/AIDS
organisations is likely to be especially problematic
in low prevalence areas where the numbers of
people able to sustain a leadership role or administrative responsibilities, in addition to the existing
burden of their personal caring commitments and/
or their own illness, will be limited. Under these
conditions, the problems of leadership succession or
of schism within an organisation, or the consequences of organisational failure, are potentially
catastrophic since they may occasion renewed internal inter-faction struggle over the identity of the
organisation or its successor(s). Even if this is not
*`High involvement' meant any practice which had seen
more than one HIV-positive patient within the preceeding 12 months.
1199
the case, it seems plausible that metropolitan high
prevalence conditions will be capable of sustaining
a much greater diversity of specialised SMO provision than is feasible elsewhere. A survey of 546
HIV/AIDS SMOs (Weeks et al., 1994) con®rms
that outside London, voluntary activity tended to
be delivered via fewer multifunctional agencies,
while within it there was a wider range of specialist
HIV and generalist organisations responding to particular needs.
This paper presents the results of a comparative
study of two low prevalence district health authorities (HA) using a strategic change perspective
developed by Pettigrew et al. (1992) and Bennett
and Ferlie (1994). We outline the changing policy
context from the mid-1980s to 1995, and analyse
the district policy responses to HIV/AIDS with particular regard to the relationship between HAs and
SMOs in their dual role as informal service providers and political pressure groups. We conclude
that the level of prior social movement mobilisation
and the degree of receptivity for change within the
HA are the two most important variables for
explaining the variation in the levels of strategic response and service innovation observed in the two
districts.
METHOD
This study was carried out as a part of a twoyear programme of research into patterns of HIV/
AIDS service provision and utilisation in District
A. Four other studies were undertaken: a postal
survey of the role of general practitioners (GPs) in
HIV/AIDS care; in-depth interviews with 11 GPs
and 15 sta€ in `high involvement'* practices; indepth interviews with 20 HIV positive service users
(recruited via the GU clinic and a social service-run
informal drop-in centre); and a postal survey of
aspects of general practice policy and organisation
relevant to people with HIV/AIDS.
This paper is based on two main additional
sources: the analysis of documentary sources (especially the AIDS (Control) Act 1987 annual
reports for the two districts from 1988 to 1995) and
routine statistics on service provision and utilisation; and in-depth interviews with over 30 representatives of service provider organisations in the
two districts (of whom six can be regarded as `key
informants'). Interviewees spanned the whole range
of provider organisations, including health (hospital
and community), social services and the voluntary
sector. They included sta€ at every level from frontline service providers to senior ocials with key
HIV/AIDS service planning and management functions. Interviews were carried out between April
1994 and December 1995 and were audiotaped,
transcribed and subjected to independent content
analysis (RP and JW).
1200
Roland Petchey et al.
The research e€ort was not equally distributed
across the two districts, but was concentrated on
District A. This was partly a re¯ection of the primary focus of the research programme as a whole,
but also of the di€erences between the two districts.
In District A, the contested nature of accounts
meant that considerable e€ort was needed even to
establish a chronology of service development. In
District B, by contrast, the degree of consensus
among informants permitted the more rapid development of a coherent theoretical account (Glaser
and Strauss, 1967).
Formal interviews were supplemented, as necessary, by more informal discussions and conversations with informants over the two-year period to
clarify particular points and to con®rm our emergent understanding of policy development in the
two districts. To validate our analysis, two drafts of
the present paper were distributed to two key informants in each district for comment, with a request
to circulate them to relevant colleagues. This process led to several minor re®nements of our analysis, but failed to elicit any major disagreements.
THE RESEARCH SETTING
District A and District B are neighbouring provincial District Health Authorities in England. Both
districts contained a mix of urban and rural areas,
but with the majority of the population in each district living in an urban area classi®ed by the Oce
of Population Censuses and Surveys as a large nonmetropolitan city (Atkins et al., 1996).
Health service provision was identical, with both
districts possessing a University teaching hospital
o€ering the full range of associated clinical specialties and research facilities. Demographically and
socio-economically they were also closely comparable on most of a series of commonly used
measures/indicators of deprivation, as shown in
Table 1, although District A tended to be slightly
more deprived than the English average, and
District B slightly less. The most striking demographic di€erence was in the proportions of the
population of minority ethnic origin: 8.2% of
District B's population was Indian.
The two districts were also similar with respect to
key features of the HIV/AIDS epidemic. Both were
low prevalence. Between the start of testing in
October 1985 and 31 March 1995, 152 cases of HIV
infection had been noti®ed among District A residents. Of these, 61 had progressed to AIDS (of
whom 44 subsequently died). In District B, testing
began a year earlier: by 31 March 1995 there had
been 211 noti®cations of HIV infection, with 73
progressing to AIDS and 56 known deaths. On the
basis of their AIDS (Control) Act (1987) ®rst noti®cation returns, the incidence of HIV infection in
District A during 1994±1995 was 21.5 per million
population and 20.7 per million in District B. In
that year the U.K. incidence was 29.8 per million
population.
In both districts, as in the U.K. as a whole, the
overwhelming majority of people infected were male
(Table 2). However, closer inspection reveals important di€erences between the two districts (and
also divergences from the national ®gures). In both
districts the majority of HIV infection was sexually
transmitted, in line with the nation as a whole (but
at a somewhat lower level). However, the proportion of infection attributed to intercourse
between men was lower than the national average
(in District B's case, markedly so). The proportion
due to heterosexual intercourse was correspondingly
greater. In District B increasing numbers of local
people had acquired their infection through heterosexual intercourse with a partner abroad, particularly in countries in East Africa and the Indian
Subcontinent. Since 1993 this had been the second
greatest risk factor for HIV infection in District B
and by 1995 accounted for 24% of all infection.
Table 1. District A, District B and England: selected demographic and socio-economic variables
Variable
Population
Total
Minority ethnic origin (%)
Unemployment (%)
Male
Female
Households (%)
Car ownership
Home ownership
Overcrowding
Lone parents
r1 person with limiting long
term illness
District A
603 886
5.9
11
5
63.6
66.8
1.6
4.3
24.6
District B
England
867 505
11.1
Ð
6.2
7.9
4
9.7
4.7
71
72.5
2
3.3
21.9
67.6
67.6
2.1
3.7
24.1
Social movement organisations and HIV/AIDS
1201
Table 2. District A, District B and the United Kingdom: cases of HIV infection (cumulative to 31 March 1995) (%)
District Aa
Total
Male
Female
Probable mode of transmission
Sexual intercourse
between men
between men and women
Injecting drug use
Blood factor/tissue transfer
District Bb
UKa
152
131 (86)
21 (14)
211
179 (85)
32 (15)
21 674
18 831 (87)
2843 (13)
111 (74)
85 (56)
26 (17)
18 (13)
12 (8)
153 (72)
102 (48)
51 (24)
24 (11)
16 (8)
17 790 (82)
14 022 (65)
3768 (17)
1694 (8)
1278 (6)
a
AIDS (Control) Act (1987) noti®cations of infection.bPeople receiving treatment in District B.
HIV Information Exchange data for 1994 show
that almost 30% of HIV-positive District B residents were Black, with 21.6% from India, Pakistan
and Bangladesh. These communities were prioritised for HIV prevention work. In District A, there
was no evidence that people from minority ethnic
groups were especially at risk of HIV infection.
Provisional HIV Information Exchange data for
1995 indicated that they represented 7.7% of those
infected compared with 5.9% of the population.
Injecting Drug Use and Contaminated Blood
Factor/Tissue Transfer were the other major routes
of transmission in both districts, again in line with
national ®gures (but at slightly higher levels).
The two districts also shared a national policy
framework specifying not just policy aims but the
administrative structures and funding for achieving
them as well. A ¯urry of initiatives undertaken in
the late 1980s in response to the `crisis' meant that
this framework was ®rmly established by the early
1990s. As early as 1986 regions and districts had
been required to appoint named physicians and to
establish a structure of joint planning committees
(AIDS Action Groups) responsible for monitoring
and reporting the incidence of HIV infection and
for implementing the local response. They subsequently became accountable for the expenditure
of ring-fenced annual funding allocations for treatment and illness prevention/health promotion which
became available from 1988. The Monks Report of
the same year ocially con®rmed the lead clinical
role that had already been informally established in
most districts by departments of Genito-Urinary
Medicine (GUM) (Department of Health, 1988),
while the Acheson Report recommended the
appointment of District Control of Infection ocers
with executive responsibility for communicable disease control (DHSS, 1988a).
Given this common policy context and identically
determined allocations of funding, as well as the
demographic, socioeconomic and epidemiological
similarities that were identi®ed earlier, the degree of
divergence in HIV/AIDS service development in the
two districts was striking. District B was characterised by a high level of strategic planning in the provision of care and treatment services for people
with HIV/AIDS and a strong sense of local `ownership' of HIV/AIDS policy. There had been multiple
innovation in service provision, with services possessing a clear community orientation. A GP
Facilitator/Hospital Practitioner in HIV was responsible for integrating primary and secondary
health services and supporting Primary Care Teams
caring for people with HIV/AIDS; a `Hospital-athome' scheme delivered domiciliary intensive medical care to patients who would otherwise have
required a hospital admission; and a Paediatric/
Family Outpatient Clinic provided `one-stop' whole
family care to families of children a€ected by HIV.
Above all else, it had achieved the e€ective integration of the voluntary and statutory sectors. By
1994±1995, BASS (District B AIDS Support
Services) was the major provider of practical help,
emotional support and counselling to people with,
or a€ected by, HIV/AIDS. The volume of services
delivered that year by volunteers was estimated to
be equivalent to employing 23 full-time workers.
District A, by contrast, was characterised by
comparatively low levels of strategic planning and
service innovation. Care and treatment services for
people with HIV/AIDS had been shaped in line
with national policy initiatives with little distinctive
local input or ownership evident. Health care was
dominated by the secondary sector, with services
revolving around GUM and community services,
and primary care involved only marginally, unsystematically and unsupported. Crucially, by 1993±
1994, voluntary sector organisations had (as one
service user put it) `imploded'.
(Chronology follows on the next page)
1202
Roland Petchey et al.
DISTRICT A: TRADING WITH THE ENEMY?
An outline chronology of the voluntary sector in District A, 1990-1995:
1990-1991:
Under the umbrella organisation of District A
AIDS Information Project (AAIP), the following
services were provided:
. the telephone advice and counselling service
received 800 calls;
. the `Buddy Group' provided support to 22
people and trained 40 Buddies. It was also
reported to be planning expansion of its services and reorganisation of its management
structure;
AAIP appointed a full time Administrator,
funded from the Health Authority's Special
Fund for AIDS and Drugs, in April, 1990.
The `AIDS Bereavement Service' (ABS) provided bereavement counselling to people with
HIV/AIDS, their partners, families and friends.
Further support was also available through
District A Body Positive.
Under the umbrella of Drug Dependents
Anonymous (DDA), two further voluntary sector
support groups were available to drug users with
HIV/AIDS, HIV and Drug Dependents (HADD)
and Women, AIDS and Drug Dependents
Anonymous (WADDA).
1991-1992
AAIP appointed a second full-time worker. Its
telephone Helpline received 665 calls. In May,
together with Body Positive, it launched a new
trust fund, `The Captain's Fund', to assist in
cases of ®nancial hardship among people with
HIV in District Ashire. It was reported to be reconsidering its internal structure and planning to
move to new city centre premises which it would
share with Body Positive.
The `Buddy Group' buddied 30 people and
undertook training for buddies.
The Health Authority funded part time secretarial support for ABS, releasing members for
bereavement counselling work. ABS was
reported to be planning to set up an AIDS
Carers' Emotional Support Group (ACES).
In September, a Family Support Network Group
was set up with its own funding and facilitator
as a self-help group for families of people with
HIV/AIDS in the region.
In November Positive Support was established to
provide social, emotional and practical support
to carers of people with HIV infection countywide. A 24 hour answering service manned by a
volunteer was provided. It received 29 referrals,
of whom 12 became ongoing clients. It had 22
volunteers, of whom 6 were quali®ed nurses.
HADD and WADDA continued to support drug
users with HIV/AIDS.
1992-1993
In May Body Positive was disbanded. Some of
its informal support functions were taken on by
a successor organisation, the `Tall Trees Club',
(subsequently the `Peacock Club'). In July AAIP
appointed a part time Administrator and a full
time Project Coordinator in August, both funded
by the Health Authority from its AIDS Special
Funds.
In November AAIP relocated to its new premises.
Between April and October its Helpline received
311 calls. The service was withdrawn in
November due to relocation and a reduction in
calls received out of hours.
The `Buddy Group' buddied 12 people.
Reorganisation of the service (to be renamed the
`Befriending Service') started.
`The Captain's Fund' made grants totalling £3984
to 45 applications received during the year.
In February 1993 AAIP suspended most of its
services to allow for internal reorganisation,
prior to relaunch intended for June 1993. During
the suspension `The Captain's Fund' remained
operational and buddying/befriending continued
for existing clients.
Positive Support received 31 referrals, made 18
home assessments and provided support to 7 clients. It had 19 volunteers.
ABS received 94 telephone calls and provided a
service for 35 clients. Its 4 volunteers worked
272 hours.
The Family Support Network Group continued.
HADD and WADDA continued to support drug
users with HIV/AIDS.
1993-1994
The Family Support Network Group ceased to
operate.
AAIP closed. A limited befriending service continued to operate.
Operation of the Captain's Fund was taken over
by the Health Authority.
ABS received 137 telephone calls for help.
DDA (HADD and WADDA) closed.
1994-1995
Positive Support closed.
ABS closed
Social movement organisations and HIV/AIDS
Until 1992 the voluntary sector in District A
appeared to be thriving (see above outline chronology of the rise and fall of HIV/AIDS voluntary organisations in District A). Under the umbrella of
AAIP (District A AIDS Information Project), the
range of services being provided was expanding, as
was the organisational infrastructure supporting
them. Between April 1990 and July 1992 the salaried administrative and secretarial workforce
increased from one to four (full-time equivalents)
and in November 1992 AAIP moved into new premises. These developments could be viewed as evidence of organisational vitality. With the aid of
hindsight, however, symptoms of incipient organisational pathology were already discernible in the
form of duplication of functions and a proliferation
of highly specialised service provision for sectional
interest groups.
By the end of 1992, there were (either in existence
or under active consideration) eight separate organisations providing emotional and practical support
to people with HIV/AIDS, their carers and their
families (the Buddy Group, ABS, Body Positive,
ACES, the Family Support Network Group,
Positive Support, HADD and WADDA). At this
time, there were probably fewer than 100 people
with HIV/AIDS in District A. Alongside the confusion of aims there was also evidence of overlapping geographical coverage. Some services were
district-speci®c, others encompassed the county
(Positive Support) or even the region (Family
Support Network Group). Moreover, two of these
organisations had been established intentionally in
opposition to AAIP. ABS had been set up to cater
for a need (bereavement counselling) which some
service users felt was not being properly addressed
by AAIP, while Positive Support was a break-away
deliberately intended to `kick AAIP up the backside' (in the words of one service user). Both of
these splinter groups were funded by the Health
Authority, at the same time as it was funding
AAIP. Managing the tension between generic and
specialist service provision and prioritising needs
have been identi®ed as problems confronting HIV
service organisations elsewhere (Weeks et al., 1996).
The e€ectiveness of these organisations is also
questionable. A survey of HIV/AIDS service users
reported extremely low levels of awareness of
voluntary organisations (James, 1994). Only two
services were recognised by a majority of respondentsÐthe Befriending (Buddy) Scheme (76%) and
the Captain's Fund (56%). Then came the two
splinter groups, Positive Support and ABS (34%
and 29% awareness respectively). The remainder
averaged around 13% awareness. Another warning
sign was the dispute during 1992 over the proposal
to change the name of the Buddying Group to the
`Befriending Group' and to require all existing buddies to submit to retraining and re-accreditation.
This was ®ercely resisted by some as an attack on
1203
the status of the buddy relationship, and as a signal
of a hostile intent to `de-Gay' (Patton, 1990) the
HIV/AIDS epidemic and District A's response to it.
This dispute between the `buddies' and the `befrienders' was frequently advanced as an important contributory factor in the eventual collapse of AAIP.
So, even before 1993, there were signs that AAIP
was already under strain. The diculty it was
experiencing in its attempts to hold together these
sectional service±user interest groups was con®rmed
by its decisions initially to review its organisation
and subsequently to suspend operations to allow
reorganisation. These turned out to be portents of
the organisational `meltdown' which eventually
came in 1993±1994.
The failure of the voluntary sector in District A
can be analysed at a number of levels. Some local
observers attributed it exclusively to local factors,
particularly the character of the gay community in
District A, which was perceived to be unusually ®ssile and fractious:
District A has a very old and fractious gay scene, and it
has never come together yet as a community to actually
start working together. When you've got an illness like
AIDS so profoundly a€ecting a group of people as HIV
has a€ected gay men, and the gay community has had the
problems covering District A, then any organisation is
necessarily going to have the con¯icts of the gay community acted out in it. (Service provider)
The interviews with HIV-positive service users
suggested the existence of several lines of cleavage
among gay men in District A around issues of gay
identity, activism and organisation, and the relationship between sexual politics and the politics of
HIV:
Two chaps came over from [name of city], from Body
Positive, and they frightened the life out of me. I took a
cushion and went and sat in a corner. I thought they'd be
having me in drag next and collecting on the street, they
were soÐnot aggressiveÐwell, they frightened me. I don't
mind money raising, but I don't want to do it with a wig
on and high heels. (Gay service user)
These manifested themselves as a series of disagreements about organisational priorities: between
those who were HIV-positive and those who were
not; between those who were willing to disclose
their HIV status and those who were not; between
those who identi®ed the primary role of AAIP as
health education and HIV prevention and those
who saw its central task as supporting those who
were already a€ected.
There were also divisions between the volunteers/
service-users and the paid `professionals'. It was frequently complained that `in®ghting', `petty politics'
or `personality clashes' had been allowed to
obstruct the e€ective delivery of services:
I suppose it was like my vocation in lifeÐgot to help
others. It was important and I wanted to be part of it. I
sometimes think that there's too much politics and not
enough actionÐit's a shame because there are a lot of
people that really care that want to do something. I know
1204
Roland Petchey et al.
nothing aboutÐI mean I remember going and we had
many meetings and there'd be talks and constitutions and
management committeesÐand I'm like, `God, this is really
boring. I just want to be out there doing something.' (Gay
service user)
However, although local conditions are undoubtedly a necessary factor, they are unlikely to be a
sucient explanation. The fact that AAIP was not
the only HIV/AIDS voluntary organisation to have
experienced collapse suggests the operation of more
general organisational processes over and beyond
purely local circumstances. The terminal crisis of
`Frontliners' in 1990±1991 (Moreland and Legg,
1992) and the near-fatal crises of the Terence
Higgins Trust in 1987 (Schramm-Evans, 1990) and
Body Positive in 1994 (Williams, 1995) con®rm that
the stresses imposed on voluntary organisations
during the process of transformation from self-help
groups or groups campaigning on behalf of sectional service user interests into service providers
can be intolerable.
These more general organisational processes
need, in turn, to be located in the external environment in which AAIP was operating. It is not just
the manner of the collapse that should be regarded
as signi®cant but its timing also, coinciding as it did
with the changes in the national policy environment
which have been noted above. In District A, these
changes had two main consequences. First, the imposition of greater accountability exacerbated the
existing internal strains in the relationship between
paid and unpaid sta€, as attempts to introduce professional standards of assessment and evaluation
were resisted by (some) volunteers:
when A came in she wanted it (AAIP) restructuring and
admittedly there weren't constitutions, there weren't policies and if the Charity Commission knew this, they would
have had a dicky ®t. Because it was a charity and of
course you have to have all these things to run as a charity. So people were asked to go for selection, people who
had been buddying for years. And there was an awful lot
of bad feeling. (Statutory service provider)
®nd premises. If you can arrangeÐerÐget the constitution
together.' And I'm like, `Hang on a minute. We're doing
all the work, we've all got jobs as well.' You know, we've
got 9 to 5 jobsÐand then having to come to two or three
meetings a week or a meeting every week to try to keep
something together. And I used to get pissed o€ with it.
(Gay service user).
Given that the relationship between the HA and
the voluntary sector was already characterised by
low trust, mutual misunderstanding and wariness
and/or suspicion, such requirements were likely to
be perceived as illegitimate impositions or as deliberate obstructiveness. This in turn reinforced the
perception of the HA as part of the problem rather
than of the solution:
Oh yes. These clients were sort of hyping up. You know,
`We've got to get this money. We've got to do this. And
the Health Authority are crap and X (HA ocial) is a
tight old git.' (Service provider).
When we ®rst joined the voluntary service we were very
naive. We didn't understand the interplay between voluntary services and the statutory sector which can be very
frictional. (Gay service user).
Under these circumstances, the pre-existing tendency towards voluntary sector oppositionism was
reinforced by the response of the health authority.
As a result of their instability and perceived unreliability, voluntary organisations found themselves
marginalised or excluded from the formal policy
process, and forced to compete for resources among
themselves and against the HA from outside the
system. Their inability to in¯uence the distribution
of resources in turn sustained the oppositionist
character of their relationship with the HA which
further intensi®ed their factionalism. At the same
time their inability to provide the services which
were needed by their members (actual as well as potential) detracted from their capacity to sustain and
renew their membership. In turn, these repeated
membership and/or leadership crises provided oc-
Second, they led to a change of Health Authority
policy towards the voluntary sector as it sought to
initiate a more contractual relationship in keeping
with its purchaser role within the newly introduced
internal market:
Of course, it's very dicult for X and Y (HA and SS purchasers) to give out phenomenal amounts of money to a
group that wants to start up. We need something that's
established and has a good track record. (Service provider)
In this respect, AAIP's experience closely parallels that of `The Landmark' (Bebbington and
Gatter, 1994). It con®rms that the contractual
requirements of purchasers in the shape of increasingly explicit and detailed service speci®cations,
could prove a fatal additional load:
like when it started to disband, it's like, `Oh, the Health
Authority are willing to purchase a buddying service, if
you can do this. And if you can do that. And if you can
Fig. 1. The dynamics of voluntary sector/HA relations in
District A: a vicious circle?.
Social movement organisations and HIV/AIDS
casions for on-going internal dissensus which
further stoked the cycle of instability.
From the HA perspective, this lack of reliability
was a powerful factor in its reluctance to engage
closely with the voluntary sector and contributed to
its marginalisation in the formal policy process.
Insofar as there had been interaction between the
voluntary sector and the HA, it had assumed the
character of arm's-length `trading with the enemy'.
The complex of internal and external pressures
which began to build up from 1992 onwards meant
that even this relationship entered a spiral of
decline, culminating in the collapse of AAIP and
the majority of the services beneath its umbrella,
and in the HA decision ultimately to withdraw
funding from those few organisational fragments
which had managed to remain operational. These
factors and processes are presented graphically as
elements of a `vicious circle' (Fig. 1).
DISTRICT B: `SPANNERS' IN THE WORKS?
If the relationship between the voluntary and
statutory sectors in District A can be characterised
as a vicious circle, District B in many ways represents its oppositeÐa virtuous cycle. Where AAIP
struggled and ultimately failed as an umbrella organisation, its District B counterpart, BASS, succeeded in sustaining a much wider, more varied and
more demanding programme of voluntary activity.
More than that, it also proved a key in¯uence on
District B's response to the epidemic. We attribute
this largely to the fact that in District B the component elements of the gay community had already
been mobilised and organised prior to the arrival of
HIV in the early 1980s. More important, perhaps,
than the fact of their mobilisation, was the manner,
through the formation of a federation of Lesbian
and Gay groups:
W, early 1980s again. `I know,' he says. `We should form
a federation of Lesbian and Gay groups in District B Ð
all di€erent sorts of Lesbians and Gay men together, with
di€erent interests and di€erent focuses, and we should
start to be more politically active....'. (BASS worker)
Out of this campaigning group, Lesbian and Gay
Action, developed `Gayline' and ultimately the
Lesbian and Gay Resources Centre, with a city
centre co€ee bar and premises, and 20 volunteers
receiving over 4000 calls a year. When the HIV/
AIDS `crisis' emerged in 1983, a crucial factor in
District B's strategic response was the existence of a
gay community which, through the alliances constructed around these earlier projects, had begun to
function as a solidary social movement and had
already experienced the advantages, both political
and organisational, of collective action in pursuit of
its goals.
Much of this achievement was attributed to the
e€orts of an individual local activist, W. From
being instrumental in the creation of the Resources
1205
Centre, he went on to play a central role in mobilising the voluntary and statutory sectors and constructing a multi-sectoral response to HIV/AIDS in
District B. He was sole founder member of District
B Body Positive, a founder member of the Black
HIV and AIDS Forum (BHAF) and of the HIV
Voluntary Sector Forum, a founder of BASS and
an early member of the Joint Planning Group for
AIDS which was responsible for the strategic development of services across agency and sector boundaries.
However, over and above his personal contribution, his career demonstrates a further important
di€erence between the two districtsÐthe receptivity
of statutory organisations to change. From his role
in mobilising the voluntary sector, he moved across
the statutory/voluntary divide to become AIDS
Coordinator for the City Council between 1988 and
1990 and subsequently the health authority's AIDS
Coordinator. The network of intra- and interagency alliances which he was able to create and
sustain through this succession of roles was locally
acknowledged as pivotal in the early development
of HIV services in the district:
He was working as a volunteer on the local Lesbian and
Gay line when they started to get calls about this strain
from America, you know. So he was really in there right
at the very beginning and was the ®rst person to be
appointed to an HIV-speci®c role in District B... and so
he'd been through it all with District B right from the
word `go'... He had very, very good relationships with the
clinicians, with the voluntary sector, withÐand he bridged
all of the sort of traditional historic gaps that there are
between the service providers. (HIV/AIDS Coordinator)
W's career as activist and administrator thus displays all the hall marks of the `boundary spanner',
which has been identi®ed as one of the hallmarks of
organisational receptivity to change and an important mechanism facilitating working across boundaries (Bennett and Ferlie, 1994). Nor was he the
only instance of organisational boundary spanning
to emerge from District B. The Diocese of B's
Chaplain for people a€ected by HIV was another
voluntary/statutory sector boundary spanner, having chaired BASS for three years before taking up
the chaplaincy. In a similar fashion, the GP
Facilitator spanned the boundary between the secondary and primary health services for people with
HIV/AIDS. This concentration of boundary spanners in key positions not only facilitated intersectoral collaboration, it also indicated the high degree
of permeability of organisational boundaries in B.
The degree of interpenetration of the voluntary and
statutory sectors and the closeness of the partnership between them were such that (unusually) the
voluntary sector came to be directly involved in the
allocation of resources as well as the determination
of policy.
W's career possesses a further signi®cance in that
it intersected with that of the then Director of
1206
Roland Petchey et al.
Public Health (DPH). Prior to her appointment, she
had been a public health physician with responsibility for HIV/AIDS since it was recognised as an
issue in 1984. She appointed W and subsequently
acted as his sponsor:
She was the person who promoted W to post as district
HIV coordinator. You know, when around the country
lots of other districts were tending to appoint management
professionals, or the post was going to a CCDC
[Consultant in Communicable Disease Control] in a sort
of nominal way. Whereas W's background was about his
in-depth knowledge of HIV, his in-depth local knowledge
about services and his sheer commitment and enthusiasm
for it all. I think he must have been something of a risk
for the health authority to appoint him to that role, at
that time. (HIV/AIDS Coordinator)
Patronage of this sort has been identi®ed as crucial to the success (or failure) of this new breed of
specialist HIV/AIDS liaison workers (ibid.).
Although occupying relatively junior positions with
little authority or status in their own right and no
independent access to resources, they were still
expected to work across entrenched agency boundaries and to tackle vested service provider interests.
Where they succeeded, a major factor was sponsorship of a supportive power ®gure. This was the case
in District B. In addition, the DPH's combination
of specialist experience in HIV and ocial status
made her a key agent of change in the HA. The
role of public health doctors in moderating the
empire-building tendencies of hospital-based clinical
product champions and promoting community
models of care has also been noted (ibid.). As noted
above, this community orientation was a de®ning
(and continuing) feature of B's HIV/AIDS treatment and care strategy.
The voluntary sector in District B was not
entirely immune to organisational failure. In
August 1992 its Body Positive branch was dissolved
by its members, while in November 1993 the
Steering Group of BHAF decided to cease operating, following a period of internal organisational
and management diculty. The HA response to
these failures is indicative of the closeness of the
working relationship between the statutory and
voluntary sectors in District B. In the case of Body
Positive, a National AIDS Trust consultation led to
the establishment of a new post within BASS,
funded jointly by the HA and the Social Services
Department of the local authority, to develop peer
support initiatives. The response to the closure of
BHAF was similar. Consultation with the remaining agencies working with the Black and Asian
communities on HIV/AIDS-related issues resulted
in the creation of two new posts to meet the needs
identi®ed as being left un®lled by BHAF's discontinuation. (In District A, by contrast, by the time
the National AIDS Trust was called in, the situation had degenerated beyond recall.)
An indication of the stability of the formal intersectoral arrangements was the nature of voluntary
sector representation on the key Joint Planning
Committee. Not only were representatives elected
(from and by the HIV Voluntary Sector Forum,
membership of which was open to all voluntary
agencies concerned with HIV/AIDS in District B);
voluntary sector representation was increased (from
two to three) in 1994. Furthermore, the boundary
spanning committees which coordinated HIV/AIDS
service delivery and integrated the statutory and
voluntary sectors all survived the introduction of
the purchaser-provider split into District B's health
services. The stability of these formal structures
during a period of organisational upheaval was, in
large part, due to the strength of the pre-existing
network of informal relationships which underpinned them. In District A, by contrast, the HIV/
AIDS Coordinator's post was an early victim of the
reforms, with the purchaser±provider split being
identi®ed by several providers as responsible for disrupting inter-agency coordination and communication.
Where District A has been characterised as a circle of fragmentation, marginalisation and SMO failure, District B can be regarded as a virtuous cycle
of cohesion, incorporation and stability, as represented in Fig. 2.
CONCLUSIONS
The most striking ®nding to emerge from these
case-studies is the marked contrast in the development of HIV/AIDS care and treatment services
(both voluntary and statutory) in the two districts.
As large non-metropolitan cities with similar HIV
prevalences, operating within an identical national
framework of policy and accountability and with
identically determined allocations of ring-fenced
funding, it might have been expected that their responses to the HIV epidemic would have been similar also. The fact that policy evolved so
Fig. 2. The dynamics of voluntary sector/HA relations in
District B: a virtuous cycle?.
Social movement organisations and HIV/AIDS
independently and so divergently in two neighbouring health authorities is signi®cant for two reasons.
First, it con®rms that, as a learning organisation,
the NHS remains considerably less than the sum of
its parts (Bennett and Ferlie, 1994). The failure of
innovation to di€use across authority boundaries
(even between immediate neighbours) indicates that
learning across the whole organisation is still problematic. Second, it underlines the degree of local
variability of policy response that is possible within
the same national policy context and the need to incorporate this into national or cross-national comparative analyses of HIV/AIDS policy. We do not
claim that these two districts are in any way generalisable (indeed, it is conceivable that subsequent
research might reveal them to be polar extremes).
What is signi®cant about them is the unexpectedly
stark contrast they provide.
Underlying this variation in service development
were entirely di€ering dynamics of HA/SMO relations, which we have traced to the di€ering trajectories of the social movements in the two settings
and the di€ering degrees of receptivity to change
within the health authorities. In District A the
incomplete and fragmentary nature of the mobilisation of the constituent elements of the gay community denied it a coherent voice in the policy process,
while its lack of reliability in the eyes of the HA
prevented genuine dialogue and ensured that the
two became locked into a spiral of estrangement
and declining trust. These existing strains and tensions were exacerbated by the process of formalisation of statutory/voluntary sector relationships
from 1992 onwards. Once it had begun to fray, the
entire voluntary e€ort unravelled with alarming
rapidity. District B, however, demonstrates that
these processes are not inevitable. The alliances
which had been constructed within the gay community around earlier projects concerned with rights,
recognition and resources provided the organisational basis for a more coherent response to HIV/
AIDS, which in turn legitimated its claim to a role
in the policy process and facilitated a stable relationship with the HA. These case studies thus
reproduce at a local level the observation at the
cross-national level that the most e€ective responses
seemed to occur in areas where the gay movement
had already secured recognition as a legitimate
pressure group (Altman, 1988).
They also con®rm the suggestion that it is inappropriate to treat the gay community as a homogeneous social movement with a singularity of
purpose in its response to HIV/AIDS. Rather, it is
more helpful to view it as a complex community
with a varied constituency and an equally variable,
contested, and constantly evolving relationship with
the epidemic, but with the capacity to mobilise in
provisional alliances around speci®c projects
(Padgug and Oppenheimer, 1992). Since the focus
of our research was service development and the
1207
inter-relationship between the voluntary and statutory sectors rather than the voluntary sector per se,
we acknowledge that our understanding of the gay
communities in the two districts and their internal
dynamics is limited. Nevertheless, we are con®dent
that the processes and mechanisms generating con¯icting perspectives on local priorities in District A
are consistent with the tensions and dilemmas identi®ed by Weeks et al. (1996): self-help vs altruism;
campaigning vs service delivery; volunteer leadership vs professional management; generalist vs
specialist services; autonomy vs coordination; and
service norms vs eciency norms.
Finally, they con®rm that the processes of alliance formation and social movement mobilisation
are not exclusively internal. They occur within a
framework of relationships with external agencies
and an external policy context. Previous work has
focused on national contexts. These case-studies
suggest that even within the framework of a centrally funded and centrally determined national policy response to HIV/AIDS, there can be a
surprising degree of local autonomy and variability
of implementation which appears to be independent
of social, demographic and epidemiological variables. The process of local policy formation and the
characteristics of the local agencies responsible for
it (in particular, the receptivity to change of health
authorities) need also to be incorporated into analysis of HIV/AIDS policy.
AcknowledgementsÐThis study was funded by the
Department of Health. We thank them for their support,
and especially Drs Liza Catan and Sandra Williams for
their help and encouragement. The views expressed in this
paper are those of the authors and not necessarily those of
the Department of Health. We are also extremely grateful
to the various service providers, planners and users in the
two districts whom we interviewed. Without their generous
help and cooperation this study would not have been possible.
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