APPENDIX 27
Memorandum by Paul McCrory (SH 45)
1. BACKGROUND
Since the publication of the National Sexual
Health and HIV Strategy I have given careful thought to the content
of that document. I have also had discussions with colleagues
within the HIV and broader social health sectors. I continue to
experience some difficulties in reconciling the Government's public
statements of commitment to the key principals of transparency,
accountability, joined up thinking and putting the patient at
the centre with the content of the document. In considering the
document I am focusing on post diagnosis and living with HIV.
For the majority of people living with sexually
transmitted infections, diagnosis and treatment are important
and key issues. Once people have been treated they can get on
with their lives as these are not long term medical conditions.
This highlights the significant difference as for many people
the impacts, immediate and longer term, of an HIV diagnosis means
that they have to access a broader range of resources for support.
2. STATUS OF
THE STRATEGY
DOCUMENT
My understanding from discussions with the Minister
was that the Strategy was being put out as a draft document for
consultation. I was given an assurance that a revised document
would be produced. From discussions with the Department I understand
that there is no intention to publish a revised strategy which
will address the concerns and issues which are raised during the
consultation process. This is a matter for regret as:
— it is important that those who make
responses see that their comments have had some impact on the
content of the document, and
— we would then be clear about what
is being implemented so that this can be monitored. It is also
poor practice for communication and will set a precedent for any
other consultation processes engaged in by the new strategic Health
Authorities and the Primary Care Trusts.
3. BOUNDARIES
AND PARAMETERS
While any Government in its strategic thinking
has to consider boundaries and parameters within which interventions
are planned, it is important that thought is given so that these
do not become limitations on or undermine strategic planning.
Health is a complex area in which a significant number of co-factors
come together and the impact of these on the individual determines
their health. Sexual health and health issues related to sexual
transmitted infection are more complex because of social attitude
and the sexual "mores" of society. It has been recognised
for some years now that in planning responses to health issues,
the social determinants of health must be evaluated[10].
In the forward to the Sexual Health Strategy, the following point
is made:
"There are an increasing number of people
living with HIV, the rates of sexually transmitted infections
have increased significantly in recent years, and there is a high
rate of unintended pregnancies. Evidence suggests that many people
lack the information they want and need to make informed choices
that will affect their sexual health. There is a clear relationship
between sexual ill health, poverty and social exclusion. The quality
of service provision remains varied across the country. For all
these reasons it is time to re-examine traditional approaches
to the way problems associated with sexual health are addressed.[11]
"
However, having acknowledged the impact of these
social determinants the Strategy fails to address them. It should
be noted that: "People with HIV are still coping with uncertainty,
discrimination, anxiety, violence, loss and displacement. People
with HIV are still looking after children, seeking and sustaining
relationships, searching for trust in friendships and satisfaction
in sex. People with HIV are still holding down jobs, fighting
for basic rights and welfare, coping with inadequate living conditions,
and managing dependency on drugs. Above all, people with HIV are
still coping with the reality of living with infection, with doubt,
and with the legacy of the past."[12]
In summary, poverty, discrimination, harassment,
violence, social, physical and mental isolation etc will all impact
negatively on health and often lie at the root of ill health.
These social determinants of health must be addressed as an integral
part of any health strategy as health does not exist in a vacuum
or state of isolation. The sexual health strategy aims to treat
the condition (sexual ill health) and fails to show how it will
tackle the underlying causes (the factors which underlie the individual's
decision making processes).
4. JOINED UP
THINKING
The Government has actively encouraged the concept
and practice of joined up thinking in the responses that are being
made to social and public health at regional and local levels.
It is a matter of some regret and concern that the Sexual Health
Strategy has not been used as an opportunity to encourage greater
levels of co-operation and partnership work between the different
governmental departments who operate at national level. In particular
those departments whose activities have significant impact and
influence of the peoples' health. For example the Home Office.
"People's social and economic circumstances
strongly affect their health throughout life, so health policy
must be linked to the social and economic determinants of health.
. . Disadvantage has many forms and may be absolute or relative.
It can include having few family assets, having a poorer education
during adolescence, becoming stuck in a dead-end job or having
insecure employment, living in poor housing and trying to bring
up a family in difficult circumstances. These disadvantages tend
to concentrate among the same people, and their effects on health
are cumulative. The longer people live in stressful economic and
social circumstances, the greater the physiological wear and tear
they suffer, and the less likely they are to enjoy a healthy old
age."[13]
While it may be out with the power of the Department
of Health (DoH) to directly determine policy of other government
departments, it lies within the DoH's power to influence the decisions
and work jointly on appropriate interventions. In 2001 the Government
signed up to the UNGASS Declaration[14]
which acknowledges the impacts of social exclusion on health.
It is vital that evolving strategies should seek to address these
issues and clearly demonstrate how they relate to other strategic
documents.
5. FRAMEWORK
FOR IMPLEMENTATION
As the Strategy currently stands it does not
appear to provide a tangible framework for implementation which
will enable effective management of this process.
It is a matter of considerable concern that
after investing significant amounts of time in drafting and publishing
a draft Strategy, the Government has not underpinned this commitment
by producing a National Service Framework for Sexual Health and
HIV.
— It is important that a framework
to enable management, monitoring, evaluation and review to occur
be developed. Such measurements will also enable for example,
identification of problems of commissioning and of access to services
as they arise so that these can be addressed.
6. RESOURCING
OF STRATEGY
While the additional allocation of funding made
for the strategy is welcome it must be noted that this is (a)
not being given for direct service provision and (b) is being
allocated over three years.
6a. It is laudable and logical to set targets
for the reduction of the numbers of undiagnosed infections but
it is a matter of some concern that this is not matched by concomitant
commitment of resourcing for Treatment and Care and social support.
There are indications that with the increasing numbers of people
diagnosed there are increasing lengths of waiting times for appointments.
— Mechanisms for monitoring the impact
through lengthening waiting list and the possible poorer quality
of services provided must be identified.
In addition there are concerns that PCT's commissioning
intentions and priorities could lead to de-prioritisation of HIV
as a matter of local concern, post code prescribing or rationing.
In particular in light of the increasing costs of provision of
combination therapy.
— Mechanisms for monitoring the impact
of mainstreaming of funding must be developed.
Above all it is vital that the Strategy be properly
resourced as without this investment it is likely that:
— the numbers of those being diagnosed
with sexually transmitted infections will continue to rise, and
— those diagnosed will receive treatment
and care which is of an increasingly poor quality and standard.
6b. Furthermore for many PCT's, prevention
and health promotion is likely to be low priority. There are concerns
that low prioritisation could lead to fewer or poorly resourced
campaigns. The government needs to identify mechanisms:
— to ensure that campaigns are commissioned,
monitored and evaluated to ensure that they are effective.
— to ensure that campaigns are targeted
at those groups at highest risk of HIV infection so that these
marginalised groups are not further marginalised, and
— to take a lead on ensuring that there
is co-operation and partnership between PCT's in the commissioning
of prevention and health promotion campaigns.
— for participation of PLWHIV in production
of prevention and health promotion campaigns. For example, there
is no mention of the guiding principles for participation which
have been developed by the Network[15].
In short PLWHIV must be involved in the designing and implementation
of prevention and health promotion strategies or it must be made
clear why they are being excluded.
— That prevention campaigns and health
promotion materials aimed at PLWHIV are produced, this is important
post diagnosis.
and above all:
— The Department of Health must consider
its role to ensuring that campaigns have a national lead with
appropriate support and resourcing at regional and local level
and recognise that it has a responsibility for leadership in this
matter.
6c. With the increasing pressures on specialist
centres to provide medical services to PLWHIV, there is a logic
to encouraging the use of specialist GP's to provide medical services.
Indeed in many specialist centres this is already occurring. However,
the Government must be aware:
— That while being told that they should
use their GPs in many clinics there is a lack of clarity about
what conditions should be taken where. Personally speaking I have
been told that I should go to my GP with "non HIV related
conditions" but to date have not been given clear guidance
about what is non HIV related. Clear guidance and guidelines are
required if this trend is to continue;
— of the research into reasons why
many people living with HIV will not use GP services[16]
must be noted; and
— that PLWHIV have not been consulted
abut this significant change prior to publication of the strategy.
7. SOCIAL CARE
AND VOLUNTARY
SECTOR
A great deal of work was invested in discussing
the role of the voluntary sector at working group meetings. The
quality of this work is poorly reflected in the related section
of the strategy[17].
In relative terms the strategy predominantly focuses on clinical
practice and clinical delivery with little focus on broader social
and sexual health. People living with HIV infection may in many
instances make a lesser use of clinical services than those which
provide social support.
7a. There is evidence to date that the increasing
numbers of PLWHIV is making significant demands on "voluntary
sector" organisations providing support. There are legitimate
concerns that increasing demand may over stretch the resources
of those organisations which are already under resourced[18].
— The Department should give consideration
to appropriate funding mechanisms for organisations of PLWHIV.
These groups fulfil a vital role for peer support, adherence to
treatment regimes and safer sex practices, and for being a watchdog
with a mandated voice. (see also section below on a social care/voluntary
sector and the voice of PLWHIV).
7b. There are indications that the needs
of people living with HIV are not being meet by "Social Services"
departments due to limitations of funding. It is not clear how
this could be monitored following the shift to PCT commissioning
to ascertain the numbers gaining access to or being denied access
to services.
7c. There is confusion between organisations
that provide services for PLWHIV and organisations of PLWHIV.
There needs to be clearer differentiation of roles. This is particularly
important in light of the changes in funding mechanisms taking
place. Without clear and proper guidance from the government through
the DoH, many PCT's are unlikely to:
— consider the differences when considering
funding;
— give priority to grass roots organisations;
and therefore
— de-prioritise HIV groups and organisations
as they may not be the most vocal or familiar with the new mechanisms
and structures. Data shows that some 60% of self help HIV and
AIDS groups had not had contact with the PCG's in 1999[19].
8. INVOLVEMENT/VOICE
OF PLWHIV
This has been discussed on a number of occasions
with the DoH, which has been advised how to do this and most importantly
that this needs resourcing. This is reflected in recommendation
16 of Social Care Working Group. Summary of Recommendations: "The
strategy should recognise that self-help continues to provide
a valuable complement to statutory services, re-launch the self-help
movement and place it on a viable footing for the future, perhaps
by top-slicing a modest amount of funding from national budgets
to provide a central agency to assist local self-help groups.[20]
"
8a. On the issue of service user involvement
and in line with the "Patient and Public Involvement Strategy[21]"
work needs to be undertaken to monitor how service user involvement
is happening within clinics, organisations that provide services
and how PCT's are engaging with the community of PLWHIV. There
are very real fears that this voice may not be listened to, heard
or be pushed aside by other more articulate groups living with
medical conditions which are more acceptable to society. (see
also note above about low levels of contact to date).
9. IN CONCLUSION
It is my considered opinion that if a revised
strategy which addresses the key concerns raised, which:
— has clearly set objectives and targets,
with clear standards, clear time scales and the supporting guidelines;
— demonstrates an integrated approach
between clinics, social services, the voluntary sector and governmental
departments;
— provides a clear framework, and establishment
of mechanisms, for implementation is not produced this will undermine
the credibility of the Governments commitment to sexual health.
Without such amendments and inclusions how can anyone understand
what is trying to be achieved and how.
If this is not done, and is not properly resourced,
it will make:
— management and monitoring;
an almost impossible task for those responsible.
Above all this could impact negatively on those people whose health
the strategy aims to uphold and promote.
June 2002
10 Social determinants of health, The Solid Facts.
Edited by Richard Wilkinson and Michael Marmot. WHO 1998. Back
11
Foreword, The national strategy for sexual health and HIV. Department
of Health, September 2001. Back
12
Proceeding with care. Phase 3 of an ongoing study of the impact
of combination therapy on the needs of people living with HIV.
Sigma research May 2000. Back
13
Social determinants of health, The Solid Facts. Edited by Richard
Wilkinson and Michael Marmot. WHO 1998. Back
14
Declaration of Commitment on HIV/AIDS, "Global Crisis-Global
Action". United Nations General Assembly Special Session
on HIV/AIDS 25-27 June 2001. Back
15
MAKING IT BETTER, guiding principals for the inclusion of the
needs and rights of gay men with HIV in sexual health promotion
and primary HIV prevention. M. Ward. The Network of Self Help
HIV and AIDS Groups. March 2001. Back
16
"The last resort would be to go to the GP" Understanding
the perceptions and use of general practitioners services among
people with HIV/AIDS. Petchey, Farnsworth and Williams. Social
Science and Medicine 50 (2000) 233-245. Back
17
Sexual Health and HIV Strategy. Services Sub-Group, Social Care
Working Group. Summary of Recommendations. Back
18
The Network Funding Audit 1999. The Network of Self Help HIV and
AIDS Groups. P. McCrory. September 1999. Back
19
The Network Funding Audit 1999. The Network of Self Help HIV and
AIDS Groups. P. McCrory, September 1999. Back
20
Sexual Health and HIV Strategy, Services Sub-Group, Social Care
Working Group, Summary of Recommendations. Back
21
Involving Patients and the Public in Healthcare, A Discussion
Document. Department of Health September 2001. Back
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