APPENDIX 28
Memorandum by Medical Foundation for AIDS
and Sexual Health (SH 47A)
1. INTRODUCTION
1.1 The Medical Foundation for AIDS &
Sexual Health submitted written evidence to the Select Committee
in May 2002. This briefing note is supplementary to that original
evidence and concentrates on services for HIV treatment and care.
It is informed by what we have learnt from providers, commissioners
and users of HIV services during our project work on HIV service
standards and networks.
2. ORGANISATION
AND PERSONAL
PROFILE
2.1 The Medical Foundation for AIDS &
Sexual Health (MedFASH), a charity supported by the British Medical
Association, aims to promote excellence in the prevention and
management of HIV and other sexually transmitted infections. We
work by informing and advising health professionals on excellence
in practice, and by briefing policy-makers.
2.2 Set up in 1987, we have produced a range
of resources to support health professionals on different aspects
of HIV management, including videos and booklets on good practice,
research summaries and briefing sheets, and standards for HIV
services. With good links to the medical profession but no affiliation
to any particular specialty or interest group, we are well-placed
to support both HIV-specialists and non-specialists, and to foster
communication between them. A key target audience for us has been
GPs. Our interest in the organisation of HIV services complements
that of other bodies (such as the British HIV Association), which
tend to address more clinical treatment issues.
2.3 Recent work has included a project to
develop new standards for NHS HIV services and to facilitate the
further development of managed service networks for HIV. We are
currently revising and editing the draft standards based on feedback
from health professionals, commissioners and service users. We
will also shortly be publishing the report of an earlier MedFASH
project set up to map and support the development of HIV service
networks in four parts of England.
2.4 I have been Executive Director of MedFASH
since May 2000. Prior to that, I managed the HIV and Sexual Health
Programme of the then Health Education Authority and have over
20 years' experience of working in different areas of sexual health.
3. DEVELOPMENT
OF STANDARDS
FOR NHS HIV SERVICES
3.1 HIV still presents major challenges
for those living with the virus and those working in prevention,
treatment and care. Too many infections remain undiagnosed, treatment
regimens are complex and demanding, new population groups with
different needs are affected, and HIV remains potentially fatal.
The Public Health Laboratory Service has recently predicted a
25% increase in new HIV diagnoses during 2002.
3.2 The new NHS HIV service standards provide
a tool for addressing these challenges. By describing the care
all people with HIV should expect to receive at each point on
the care pathway, the standards reflect government priorities—to
reduce inequalities in access to health services and to provide
patient-centred care. The standards should apply in all parts
of England, even though the organisation of services will vary,
and they include the aspects of service provision needed to ensure
equity of access for those who are most vulnerable and have the
most complex needs. They should also provide a template for the
same quality of care for people with HIV in institutional settings,
such as prisons and detention centres.
3.3 Service standards complement more detailed
clinical guidelines. An audit of the British HIV Association (BHIVA)
treatment guidelines has shown that their implementation is widespread.
This is positive news, but problems remain which highlight the
importance of service standards.
4. KEY ISSUES
ADDRESSED BY
THE STANDARDS
4.1 The BHIVA audit found that the most
common reason for people with HIV not receiving treatment according
to the clinical guidelines was late diagnosis, after the optimum
time for starting antiretroviral therapy. As individuals with
symptoms indicating underlying, but as yet undiagnosed, HIV infection
will often seek help from mainstream health care providers, the
standards stress the importance of wider awareness of, and confidence
in dealing with, HIV among health professionals in primary care,
emergency services and hospital general medical settings. These
health professionals can play a key role in picking up unsuspected
and undiagnosed HIV infection.
4.2 There are still anecdotal reports of
suboptimal treatment. HIV is a fast-moving area requiring rapid
and frequent updating of expertise among specialists. Education
and training, multidisciplinary working, the seeking and giving
of expert advice, and joint patient care between specialties are
all necessary to ensure high quality treatment and care. The service
standards require such ways of working, which are facilitated
through the establishment and implementation of service networks.
4.3 Quite rightly, much attention has been
given to the success of antiretroviral therapy in reducing HIV-related
deaths and late-stage disease. This medication dominates HIV treatment
and care budgets. However, people living with HIV have a range
of associated care needs, some closely connected to their HIV
treatment, such as support for adherence to complex drug regimens,
and some which are social, psychological or relating to their
general (non-HIV related) health. The effective provision of such
care, which can help empower people with HIV to manage their lives
and their health, will often require the involvement of primary
care and/or social care services as well as specialist treatment
centres. The standards, and the networks needed to deliver them,
must therefore involve these groups of professionals.
5. IMPLEMENTATION
OF THE
STANDARDS
5.1 The draft standards for NHS HIV services
have been broadly welcomed by service providers, commissioner
and users. However, concerns have been raised among all these
groups as to how their implementation can be ensured, especially
in areas of lower HIV prevalence. HIV is not the subject of a
National Service Framework (NSF), and it is not identified as
an NHS priority in the three-year NHS planning and priorities
framework. Commissioners and NHS managers face numerous other
priorities and cost pressures, and it is feared the lack of a
prominent imperative to address HIV could lead to a lack of attention
to, or at worst a disinvestment from, HIV services.
5.2 The existence of national standards,
alongside the Department of Health's forthcoming guidance on PCT
commissioning, ought to make the task of commissioning HIV services
easier, but it remains a complex area. We share the concerns of
those at local level and believe:
— commissioning of HIV services is
specialised and should take place across an area much larger than
a single PCT, through consortium and lead commissioner arrangements;
— the standards for NHS HIV services
should be used in commissioning to ensure integrated and equitable
provision of HIV treatment and care;
— the standards should be part of the
framework used for performance management by Strategic Health
Authorities;
— they should also be used as a tool
for clinical governance by service providers.
5.3 There are opportunities available which
need to be grasped, to foster the growing involvement of social
care and primary care in HIV service provision and their integration
in HIV service networks.
— The flexibilities contained in the
NHS Plan and Section 31 of the Health Act 1999 enable lead commissioning
arrangements between PCTs and local authorities, pooled budgets,
single assessments, and joint care teams.
— The new GP contract, still under
negotiation, will identify the services for which GPs will be
remunerated. We believe this will play a crucial part in determining
whether GPs are able to develop their role in the provision of
sexual health, including HIV, services.
6. PAEDIATRIC
HIV SERVICES
6.1 It should be noted that the new standards
described above are for adult HIV services, with a short section
within them relating to care for families. It is important that
they are complemented by standards for children's services and
we welcome recent moves towards the development of such standards.
As with adult services, there needs to be equity of access and
of service quality for children infected with HIV in all parts
of the country. Given the relatively small (though growing) numbers
of children infected and the fact that specialist expertise in
paediatric HIV is not widespread, the development of service networks
is particularly important in paediatric HIV care to help meet
these objectives.
6.2 Services for children, unlike HIV and
sexual health services, are currently a national priority and
will shortly be the subject of a new Children's National Service
Framework. We believe it is important to ensure the HIV-related
needs of children and young people are adequately addressed in
this new NSF.
7. MANAGED SERVICE
NETWORKS
7.1 Given the complex nature of HIV, and
the range of service needs among those affected, it is highly
unlikely any one service could meet all the needs of a person
with HIV throughout their lifetime. Services need to be organised
around the needs of the individual with HIV, so that they can
access the same quality of care whatever their point of entry
to the system and so that they experience "joined-up"
care from the different providers involved. Managed service networks
provide a way to provide services in this way and are necessary
to enable them to meet the standards for NHS HIV services.
7.2 Our project to map and support the development
of HIV service networks in four parts of England took place during
a period of change in the NHS, but before the publication of Shifting
the Balance of Power and the greater changes which followed.
However, we believe its findings remain valid. A few or our conclusions
which may be of interest to the Committee are as follows.
7.3 HIV commissioning should be undertaken
across an area large enough to cover the development of a network.
In many cases, this is likely to correspond to the size of a Strategic
Health Authority. It must be informed by a combination of HIV
specialist knowledge and an understanding of existing local provision.
7.4 Clear leadership and management must
be identified early on in network development. Different leadership
models have been tried, and leadership may come from clinicians
or commissioners, but network development may founder if all parties
shy away from taking the lead. We believe commissioners have a
crucial role to play in this.
7.5 It is also essential that any initial
suspicions and reluctance among professionals about involvement
in networks are overcome. These may arise from misperceptions
about the implications of networks or from entrenched and competitive
professional identities.
7.6 Networks need to be multidisciplinary
and involve a wide range of services caring for people with HIV,
including social care providers (statutory and voluntary) and
primary care teams. Much previous network development has focused
on linkages between specialist clinical services or within particular
professional groups. The development of new standards for NHS
HIV services has highlighted the value of a broader, more inclusive
approach.
7.7 Resources should be identified and made
available to support network development. These include financial
support for clinical cover, training days, opportunities for information
sharing or attendance at educational events, electronic infrastructure
and technical support and, where appropriate, staff dedicated
to network development. In relation to electronic infrastructure,
we believe it is important for HIV services, often based within
directorates of genitourinary medicine which have traditionally
had separate information systems, to ensure they are included
in the IM&T aspects of NHS Local Delivery Plans.
7.8 Already at the time of our project,
the long period of change and uncertainty as a result of developments
in government policy was proving a barrier to network development.
Some experienced HIV commissioners were leaving their posts, changes
in HIV funding formulae were generating confusion and insecurity,
and many participants were unsure about their future roles. This
made it hard for them to take initiatives requiring a longer-term
perspective or innovative ways of working.
8. CONCLUSION
8.1 We welcome the commitment in the National
Strategy for Sexual Health and HIV to the development of new standards
for NHS HIV services. These are now almost complete and have been
generally well received by those who commission, provide and use
HIV services.
8.2 We also welcome the requirement for
all HIV treatment and care to be provided through managed service
networks. We believe this is essential to enable the service standards
to be met.
8.3 Implementing the new standards and developing
service networks will take time and presents challenges. Mechanisms
are needed to ensure they receive adequate attention from commissioners
and providers faced with a large number of other imperatives,
of higher identified priority.
8.4 Standards provide a tool for reducing
inequalities in access to HIV services, and should be used in
commissioning, performance management, clinical governance and
audit.
8.5 Network development should be multidisciplinary
and requires leadership, resources and broad-based support.
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