APPENDIX 38
Memorandum by Pan London HIV/AIDS Providers
Consortium (SH 58)
1. INTRODUCTION
The Pan London HIV/AIDS Providers Consortium
is a network of 36 voluntary and community organisations providing
HIV services in London. Our main aims are to:
speak with a collective voice on
issues that affect the HIV voluntary sector in London in order
to influence the policy agenda of local, London and national Government;
help organisations to understand
and respond to the policy and funding climate they work in; and
argue for and help develop more strategic
and collaborative systems for addressing the commissioning and
provision of HIV services in London.
2. SUMMARY
We welcome the publication of the National Sexual
Health and HIV Strategy; a more strategic approach to dealing
with HIV issues has been needed for many years and it has been
useful to discuss the issues addressed by the Strategy with a
range of colleagues from various sectors and settings. We also
welcome the opportunity to scrutinise the effectiveness of the
Strategy through this Commons Inquiry.
While there is much in the Strategy to be welcomed,
our main criticism is that it deals with the medical and clinical
aspects of HIV and sexual health at the expense of the social
context and broader determinants of health which are equally important.
This is reflected by the fact that the Strategy is very much a
Department of Health publication which does little to secure the
commitment of other Government departments which have a role to
play in improving the health and quality of life of people with
HIV and STIs.
Much has been made of the decision to amalgamate
the previously separate HIV and sexual health strategies. While
in many ways this makes perfect sense, it is also not the only
lens through which to view HIV, and it has also led to a blurring
of the priority issues for appropriate target groups. Thinking
of HIV in terms of social exclusion and health inequality may
be more useful.
The Strategy overplays the role of information
in bringing about changes of any kind, and is particularly over-reliant
on the use of mass media campaigns.
Without appropriate resources there is a danger
that the Strategy will be ineffective. However much we may shy
away from the issue of resources and investment, the fact remains
that we get the services we pay for. There is a limit to what
can be squeezed out of existing resources. It is unfortunate that
the launch of the Strategy co-incided with the decision to mainstream
the ring-fenced HIV prevention allocation and major structural
change in the NHS. Through its Strategy implementation plan, the
DoH must to allow enough time to put in place alternative arrangements
and to monitor expenditure particularly on vulnerable areas of
work such as gay men's HIV prevention and health promotion.
The NHS is currently undergoing unprecedented
change and reform. There is a danger that HIV and sexual health
issues will not be given sufficient priority in PCTs as they develop
their roles, new relationships and funding priorities. The Strategy
is also weak on the issue of collective commissioning by PCT consortia.
In London particularly, it is not appropriate for each PCT to
commission HIV services in isolation given the mobility of the
population.
3. SPECIFIC POINTS
Our points follow the format of the Strategy.
3.1 Sexual Health in England today
The definition of sexual health given in the
Strategy is broad and reasonably positive but its aspirations
are not borne out by the rest of the Strategy which reduces sexual
health to the factors which NHS clinical services can deal with.
More consistency is needed.
It is encouraging to see some focus on "inequality"
but we need a more in-depth analysis of the issue. For example,
how does the inequality and social exclusion faced by gay men
and by people from Black and minority ethnic communities contribute
to problems of HIV and sexual health? Do these groups get their
fair share of prevention resources? What kinds of blocks are there
to their access to services?
3.2 Aims and principles
The Strategy is too reliant on the provision
of information as a means to an end. There is considerable health
promotion theory available which makes it clear that improving
people's health and quality of life is a complex process requiring
multi level action. Information is an important part of this,
as is access to services, but alone, neither will make much difference.
The inclusive focus of the Strategy is welcome,
but this inclusivity is limited. If we are serious about targeting
work where it is most needed, this needs to be followed through
in the recommendations of the Strategy. In particular, the needs
of certain key groups have been missed and this must be addressed
urgently. Groups include:
people with learning disabilities
people with physical disabilities
vulnerable young people including
those in/leaving care
young women starting puberty
older women starting the menopause
issues for BME groups need to be
unpacked a little more to reflect the differences between and
within the different ethnic groupsfor example, the concerns
and priorities of African-Caribbean people are not the same as
those of Africans.
Additionally, it is vital to acknowledge that
none of these groups are homogenous and that it is difficult to
talk about the needs of "African communities" given
the variety of cultures, languages, religions and histories.
3.3 Better prevention
The Strategy's concept of HIV prevention is
too reliant on the provision of information and does not recognise
the complexity of health promotion. It would be more useful for
the Strategy to endorse a model of health promotion, for example
a community development approach which operates at multiple levels
and includes factors such as the provision of information alongside
improving services and addressing the broader determinants of
health.
There are concerns about the use of mass media
campaigns. The HIV campaigns of the 1980s are often quoted but
in fact those campaigns merely frightened those who were at little
risk of HIV in the first place. The really effective work at the
time was being done by gay men living with of affected by HIV
organising and mobilising to do something about the crisis situation
they were in. This kind of community action, much of which happens
through the voluntary and community sector, has a vital role to
play and should be promoted by the Strategy. In a world dominated
by marketing and advertising, it is important that we remember
that the routes by which people arrive at decisions about health
are complex, and although the media has a role to play, this is
limited and needs to be supported by more targeted interventions
at local level. Mass media campaigns should only be developed
when the following questions have been answered:
What is the aim of the campaign?
Who is the target audience and is
this the best method for achieving the aim?
How will impact be evaluated?
How will local initiatives and services
support the campaign?
Are there any possible negative unintended
outcomes and how can these be dealt with?
The target of a 25% reduction in newly acquired
HIV infection is unrealistic and begs questions about how this
figure was arrived at. On its own, it seems like quite a blunt
instrument. It would be better to develop a more sophisticated
range of targets which by association point to a reduction in
HIV transmission. Some of these could be process based and relate
to specific actions needed to implement the Strategy. Targets
are also needed which are positive in focus and relate to improved
health and quality of life.
The focus on targeted HIV prevention is extremely
welcome. However, there is a danger of developing a tick-box approach
to this. CHAPS is a very significant partnership and using Making
it Count for local work is a good idea, but these are not the
only approaches that can and should be taken. Furthermore, much
of gay men's HIV prevention has been moving to a more holistic
model of health where HIV is seen as one of a number of issues
needing to be addressed with multi-level approaches. Tackling
the fundamental inequality faced by gay men in England is also
very important. This more holistic approach is being taken in
some other areas of DoH policy, for example on health inequalities,
but it is lacking here.
The role of the voluntary and community sector
needs to be analysed further. We know that the sector is often
better equipped to work with marginalised communities and to establish
trust. It can also be extremely flexible and responsive. However,
it needs the resources and a strategic approach to building capacity
in order to do this. The sector also lacks power and visibility.
Gay men's health improvement needs to be mainstreamed into the
range of partnerships and initiatives addressing health inequalities
often at local level, and not kept at the margins. Voluntary organisations
cannot do this alone and need champions within the statutory sector
to enable this to happen. This will be particularly important
in the light of the mainstreaming of the ring-fenced HIV prevention
allocation from April 2002. Given the problems encountered with
ensuring appropriate expenditure on target population groups when
there was a separate financial allocation, what assurances can
we have that this situation will not worsen next year when work
on unpopular causes such as gay men's health will have to battle
it out with all the other demands put upon NHS funds? The Strategy
must address how mainstreaming can become a reality.
We are aware of the framework being developed
for work with African communities, but similar questions need
to be asked of this initiative as of work with gay men. How can
we ensure that a holistic approach is developed and that initiatives
link into the wider BME voluntary sector, particularly in London?
The issue of power and influence also applies here; the work should
not only be carried out at the margins, but be seen as mainstream
activity carried out by an appropriately resourced voluntary and
community sector.
It is encouraging to see some emphasis on the
needs of injecting drug users. However, there are real concerns
about needle and syringe exchange schemes becoming less of a priority
for PCTs, particularly given the estimated prevalence of hepatitis
C which is far higher than HIV.
It is wrong to put the responsibility for overcoming
issues of stigma, discrimination, poverty, social exclusion, language,
etc, purely onto commissioners and service providers. Many of
these issues are out of our control and require Government action
at a higher level.
3.3 Better services
Our general point here is that the focus is
too strongly on NHS clinical services. The voluntary and community
sector has an important role to play as do many local authority
departments. All need to be seen as partners with a good deal
to contribute to the overall initiative.
3.3.1 We welcome the development of more
integrated service models. This is something the HIV voluntary
and community sector has been starting to develop, particularly
in relation to joint work with HIV clinics. However, the partnership
needs to be broader than just the NHS; and any work to clarify
roles, develop service models and networks and provide staff education
and training must include the voluntary and community sector.
These partnerships and any training carried out to assist their
implementation must always be underpinned by clear standards so
that staff are clear about what is expected of them.
3.3.2 We also broadly welcome the greater
involvement of primary care teams in HIV and sexual health work.
In terms of HIV, it has suited both them and us to keep things
separate. However, given the projected increases in numbers of
people diagnosed HIV positive in the next few years, the current
situation is unsustainable. There is undoubtedly a greater role
to play, but we must not underestimate the barriers:
Many people with HIV and people from
population groups severely affected by HIV do not have faith in
primary care systems to deal with them competently, appropriately
and sensitively. Confidentiality, that is, the sensitive management
of information, is a major concern.
We are not convinced that primary
care providers themselves feel competent and confident about dealing
with HIV related issues, particularly outside high prevalence
areas. In addition, it may be unrealistic to expect generalist
primary care providers, particularly in single handed practices
(42% in London) to take a more proactive role.
People do have confidence in the
services provided by GUM clinics. The problems are more to do
with access than with what actually happens once they get there.
If we have a system that works, does it not make sense to build
its capacity instead of looking for alternatives?
This does not mean that we are opposed to greater
primary care involvement; there is a lot that should be done.
However, initiatives will need careful planning and to be realistic
and underpinned by clear standards. For example, many people with
HIV present for testing at a very late stage showing symptoms
that should have been picked up by a GP as possibly indicative
of HIVthis is quite unacceptable and needs to be tackled
urgently. Voluntary and community organisations could have a useful
role to play in helping to develop and deliver services here.
3.3.3 HIV testingclearly it is important
to encourage those at risk of HIV to seek a test. However we must
remember that HIV is different. A problem with the ante-natal
testing programme is that it has sought to normalise testing without
really thinking through the consequences of a positive result
for the pregnant woman, particularly the non-medical consequences
which have left some women HIV positive, abandoned by their partner
and sometimes subjected to domestic violence. People do still
need information and some degree of pre and post test counselling
in order to deal with what could be a major life change. The voluntary
and community sector could have a role to play in providing counselling
and support services as part of integrated package of services
delivered by primary care practices with an interest.
3.3.4 We fully support the introduction
of managed networks for treatment and care services. These have
been discussed for some time and we must now get on with implementation.
It is important that voluntary sector services are linked in with
those of HIV clinics as a way of maximising access to appropriate
social care services.
3.3.5 Managed networks should also be developed
for children's services. These need to integrate paediatric clinical
services with those of local authorities and the voluntary sector
into a coherent model which provides the holistic support needed
by families affected by HIV. An outcome of the impending review
of AIDS Support Grant must be that the funding formula more accurately
reflects the work being carried out and commissioned by social
services. Much of this is complex family support work which needs
to be funded appropriately.
3.3.5 HIV voluntary organisations:
We welcome the fact that the Strategy gives
some acknowledgement of our role, though in fact our contribution
is often more complex. There is also a danger that in a Strategy
which promotes a medical/clinical approach, the voluntary sector
gets marginalised and is seen as less of a priority for funding.
We are also concerned that many of our partners outside the voluntary
sector confuse the role of the voluntary and community sector
with service user involvementthey are not the same thing
and this distinction should be made both in terms of HIV and sexual
health.
There are a number of specific issues which
need to be raised:
commissioning of voluntary sector
services.
This is a problem, particularly in London. While
the move towards more local, PCT based commissioning is welcome
in many instances, in terms of commissioning voluntary sector
services, it is not. People with HIV in London have to navigate
their way through a system of very different, inequitable services.
Providers are often put in the difficult position of having to
deny access to people who come from a borough/district that does
not fund the service. There is currently no expectation that commissioners
should work together across the Capital to resolve this. When
they do, and fortunately we have seen some examples of this, it
is due more to key individuals than to a system that requires
it. Commissioning needs to reflect the reality of people's lives
and there is a danger that devolving all responsibility to PCT
level will miss the fact that Londoners live in a large world-class
urban centre where people group together more by community of
interest than by geography. People live, work and socialise in
different boroughs and this modern urban context should not be
ignored by the Strategy.
The Strategy needs to give direction to PCTs
about how they should collaborate with each other and with local
authorities to commission voluntary sector services. Standards
need to be developed for commissioners who are often expected
to have a good grasp of too broad a range of issues. These standards
should outline competencies and be used as a basis for training
and development. Compacts need to be developed to guide the relationship
between commissioner and provider. Unfortunately, NHS funders
have been slow to develop these but they are proving useful in
clarifying the relationship between the voluntary sector and local
authorities and other statutory bodies. The development of the
Commissioning Toolkit is an opportunity to address this. Furthermore,
it is important that provider organisations are invited to take
part in developing the toolkit. We have experience of the commissioning
process and much to contribute in terms of good practice.
Furthermore, decisions need to be made about
which services should be funded and which providers are competent
to provide them. We need to build the capacity of organisations
to deliver the good quality, effective services people will need.
Organisations need to work on the quality of their services, both
in terms of internal, organisational issues and in terms of developing
common standards for specific services. Commissioners and people
living with HIV need to be actively involved in this process.
3.3.6 Better commissioning:
Some issues around commissioning have already
been covered above. The main point to make here is that commissioning
arrangements should be appropriate to the area in question. What's
right for London will not be right for a low-prevalence rural
area. Commissioning in cities such as London needs to cut across
PCT boundaries as these do not necessarily reflect the lives and
needs of people with or at risk of HIV. It is not appropriate,
for example to commission gay men's HIV prevention purely at local
level. Neither would such an approach be suitable for voluntary
sector services for children affected by HIV. Local Authorities
must also be required to commission in partnership with PCTs and
with each other.
3.3.7 Service user/community involvement:
We look forward to more guidance on how this
will be done. There is still no national mechanism for ensuring
people with HIV have an input in developing a strategy like this.
The new local planning arrangements proposed in the Strategy will
need to ensure that user and community involvement is built in
from the beginning. Even in London where the majority of positive
people live and many more are treated, there is no straightforward
way of doing any of this. The Government's strategy on Involving
Patients and the Public in Healthcare contains constructive
ways forward and it is important that issues such as HIV are included
in such initiatives. Imaginative ways need to be developed by
both commissioners and providers to ensure that services are based
on the needs on actual or potential service users. This kind of
work is complex and long term, however, and needs to be appropriately
resourced.
3.3 8 Collecting information:
Information collection from providers needs
a radical overhaul. It often seems that we know the cost of everything
and the value of nothing. The emphasis should be on less monitoring
and more evaluation. The information sought for monitoring purposes
should go beyond numbers and should link to the evaluation of
services so that we start to build a picture of the effectiveness
of services as well as how many people pass through them. Data
collection systems need to be standardised and simplified. A London
provider with contracts with a number of health and local authorities
could be faced with the demands of a dozen commissioners requesting
similar information in different formats. This wastes a lot of
time. Commissioners and providers must be compelled to ensure
they meet the requirements of the Data Protection Act. There is
also a problem with the ethnic monitoring currently being carried
out. Categories need to be sophisticated enough to reflect different
African population groups and should also provide a way of measuring
the impact of emerging epidemics particularly in Asia and the
Caribbean. The review of the AIDS (Control) Act reporting system
offers an opportunity to do this.
3.3.9 Evidence base and research:
A more joined up approach between research and
service provision is needed, with each informing the other. Evidence
needs to be treated with cautionevidence can be subjective
and the fact that there is no evidence for something may suggest
no more than that no-one has done the research. Arguments about
evidence should not stifle innovation or prevent unpopular or
potentially controversial work from being funded.
3.3.10 Professional education and training:
The voluntary sector often gets forgotten in
this and it can be low priority for us when funding is tight.
We need a more collaborative relationship with commissioners so
that training and development are seen as an appropriate investment
which will lead to better services in the long term.
3.3.11 Finance
The timing of this Strategy is most unfortunate.
To launch the strategy and mainstream the HIV prevention allocation
at the same time as major structural change in the NHS can only
lead to problems. The Strategy needs to be supported by a detailed
action plan which specifies how the aspirations of the Strategy
will be turned into reality. Serious thought needs to be put into
the mainstreaming of HIV and sexual health and we will all need
to become more creative about how we ensure the issue gets the
priority it deserves in PCTs. The DoH however, has a particularly
important role to play here in providing support and direction
and in monitoring progress.
While the end of ring fenced funding was inevitable,
ways must be found to lever-in the investment needed by sexual
health services which have long since been a poor relation. The
issue of bringing in resources cannot be avoided, particularly
for GUM services which in London are already stretched to capacity.
Indeed it would be irresponsible to implement a strategy which
encourages greater uptake of services without ensuring the infrastructure
is in place.
3.3.12 Review:
It was disappointing to see little in the Strategy
about review. The Strategy now needs to be supported by a detailed
implementation plan and a formal review date needs to be set.
We would suggest that this takes place in three years time. However,
specific points will need to be reviewed prior to that date, for
example, the impact of the end of ring-fencing on the commissioning
of HIV prevention.
We would also suggest that a multi-disciplinary
team is set up at national level to oversee implementation and
to iron out problems as they arise. This group must be formed
of representative organisations and bring in a service user perspective.
It should also work to ensure that the implementation of the Strategy
is carried out in a transparent manner with use made of existing
networks and fora such as the English HIV Policy Forum.
May 2002
Current Consortium member organisations:
African Community Involvement Association (ACIA)
Blackliners
Bromley CAB
Camden CAB
Cara
Chalk Farm Oasis
Food Chain
Globe Centre
Harbour Trust
Healthy Gay Living Centre
Health Initiatives for Youth
HART
Immune Development Trust (IDT)
Jewish AIDS Trust (JAT)
La Verna
London East AIDS Network (LEAN)
London Lesbian & Gay Switchboard
Metro
Mildmay Hospital UK
National AIDS Manual (NAM)
Naz Project London
Pace
Positive Care Link
Positive Options
Positively Healthy
PPC
Positively Women
Rain Trust
River House
Sigma
Streetwise Youth
Strutton Housing Association
Terrence Higgins Trust Lighthouse
The House
Uganda AIDS Action Fund
UK Coalition of People Living with HIV/AIDS
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