The Involvement of People Living with HIV & AIDS in the Development of Public Policy & Planning of Services

FOREWORD

The Red Ribbon symbol, which we have chosen for the cover of this report, has become the global symbol of the fight against HIV and AIDS. Those who wear the ribbon show their support for those living with the virus as well as their commitment to halting the spread of this disease.

Historically the Red Ribbon expressed anger at the red tape and bureaucracy which seemed to obstruct work on all fronts. People where dying. To activists and others on the front-line it seemed as though those in positions of power or influence were doing nothing.

World AIDS 1994 offered hope that all that would change. 42 Heads of Government or their representatives came together in Paris to sign the Paris Declaration. Each country made a commitment to maintaining the fight against their epidemic and against the wider global pandemic. An aspect of this was a commitment to involve people living with HIV and AIDS in that work.

Since then the UK Coalition of People Living with HIV and AIDS has begun to investigate how people living with the virus can best be involved in the United Kingdom's response to the challenges posed by HIV and AIDS. This report is the first outcome of that work.

What lies ahead is to put theory into practice. This will not be easy. The diversity of those infected and affected must not be ignored. Not everyone will necessarily wish to be included, but this is no reason to shirk the task of finding new and creative ways of reaching those who wish to contribute but who currently feel they cannot.

The UK Coalition is committed to working with all those who wish to participate in this process.

I should like to acknowledge and thank the research team and authors of this report. Also we are grateful to the Department of Health and GlaxoWellcome UK for their financial support. Most importantly, I wish to thank all those who participated as interviewees. It is your stories and experiences on which these findings are based.

John Campbell, Director - 1st December 1995

INTRODUCTION

  1. The Declaration signed at the conclusion of the Paris AIDS Summit on 1 December 1994 (the Paris Declaration) included an undertaking to "fully involve non-governmental and community-based organisations as well as people living with HIV/AIDS in the formulation and implementation of public policies."
  2. The signatories undertook to "support a greater involvement of people living with HIV/AIDS through an initiative to strengthen the capacity and co-ordination of networks of people living with HIV/AIDS and community-based organisations."
  3. As a contribution to realising these good intentions, the UK Coalition of People Living with HIV and AIDS - helped by funding from GlaxoWellcome UK and the Department of Health, which is gratefully acknowledged - has consulted with people who are living with the virus, throughout the United Kingdom, in order to find out how they would wish to be involved.
  4. One intention in doing this was to put people living with the virus at the heart of the process: to involve them by involving them. That was at least to avoid the primary error of starting by asking other people how those with the virus should be involved, thus perpetuating the problem.
  5. Another intention was to begin to build up material which would be useful in setting guidelines for the involvement of those living with the virus in decisions and organisations affecting their lives.
  6. A third intention could be expressed as one of making a contribution from the HIV/AIDS sector to the wider society. The concept of user-involvement goes wider than those living with the HIV virus. There are many groups of people, particularly among the disabled, who should, in an ideal world, be more involved in decisions which affect them. Because of the particular nature of the AIDS epidemic - the fact, for example, that the virus has struck has struck at specific, often tightly-nit communities - provision for those with the virus has often been made by, or with the involvement of, those affected to a greater extent than had been the case before. That s not to say that there is not much more to be done. But HIV/AIDS may already have some experiences to offer others. The challenge is to pool that experience, and to develop it. Those affected by HIV/AIDS wish to contribute, as well as to receive.
  7. What follows does nor seek to be comprehensive, or prescriptive. For one thing, it has all the weaknesses as well as all the strengths of a survey largely based on anecdotal evidence. The findings are therefore little more than warnings of some of the pitfalls which have been identified in the first years of pandemic. Nevertheless the UK Coalition believes the issues identified to be important, and would hope that others in the field will recognise them, and take account of them in their work.
  8. The structure of the report is simple. In the main body are identified and principle issues which emerged from the study. The Appendix gives a brief description of the methodology and the scope of the consultation on which the report is based
  9. The report covers the following issues:
  1. It is appropriate here to say a word about the use of terms. The Paris Declaration speaks of "people living with HIV/AIDS". This is a useful term, but covers two distinct groups: those actually infected with the virus, and those affected by it (normally by personal links with those infected). In what follows the two have where necessary been distinguished as people "infected" and those "affected". This may appear slightly clinical, but - as will be made clear - the distinction is important.
  2. Other concepts hang on this distinction. The principle of service-user involvement, which can to an extent be identified with the aims of the Paris Declaration, covers all those for whom the services are being provided. Many organisations provide - and rightly - services both for those infected and for those affected, both of whom need services (but whose needs may be distinct). Where this has implications for the study, the distinction has been made.
  3. Again, there is great diversity among organisations dealing with the needs of those living with the virus. These are discussed below. One distinction is crucial. Health and social services in the United Kingdom are now organised on the basis of a divide between purchasers and providers. Those terms have been used in the study: the former has been taken to apply both to health authorities and commissioning the provision of services as well as local authorities actually purchasing them, while the latter has in general been used to cover all organisations providing services whether statutory or voluntary.

THE DIVERSITY OF THOSE LIVING WITH THE VIRUS

  1. There is no such thing as the typical person living with the virus. If those infected with, and those affected by, HIV are to be genuinely involved in policies concerning them, and the provision of services for them, time and effort must be invested in getting to know who they are, and what they want. They cannot be treated as bureaucratic abstractions, nor are there likely to be neat and tidy administrative solutions, applicable throughout the United Kingdom, to the associated problems.
  2. Having said that, and bearing it always in mind, a start has to be made somewhere in identifying people, for the purpose of involving them. It is perfectly reasonable and acceptable - indeed, it is in the real world unavoidable - that groups or types of people should be used as a starting point, particularly at the level of policy-making in central government.
  3. The prevalence of the virus in certain groups - to be identified with the high-risk groups which have been targeted (however effectively) by prevention strategies - has resulted in the development of recognisable means of access to some of those living with the virus. Gay men are the most obvious example. That category itself poses problems however since gay men, and gay men infected with and affected by the virus are, are very diverse. Structures have nevertheless grown up which serve individual communities of gay men and give them a voice.
  4. At the other end of the spectrum, other groups may be entirely invisible - ultimately because individuals do not know themselves that they are living with the virus until it strikes as illness. At that point, they may have support networks through which they to make themselves them known, and no energy to create such networks. Heterosexual woman, for example, largely lack networks such as those which a gay men possess, simply because they have never needed them before.
  5. Ultimately, having the virus is not a sufficient reason to identify oneself with the community of those living with the virus. All other differences between people remain. The successful application of the principles of the Paris Declaration will ultimately depend on the sensitivity to this fact.
  6. The development of methods of involving people with the virus depends on how the problem of identifying them is approached. There are three possible approaches, non of which is adequate in itself.
  7. First, there are structures such as community care consultative groups. These will usually be created by the purchasers of services for the purpose of carrying out their functions. These groups will inevitably look to involve representatives of identifiable types - for instance, gay men.
  8. Secondly, needs assessment works can be carried out to identify more closely the actual people living with the virus in - for example - a particular locality, in order to ascertain their needs. Such work can add much subtlety to the initial identification of likely groups.
  9. Thirdly, associations formed by people living with the virus (self-help groups) can be given access to policy-making. Such groups will add a further degree of detail and subtlety.
  10. Clearly, all these approaches are being used at present. Their inadequacies are to an extent inherent, but can be mitigated by sensitivity in practice.
  11. Thus, not all people are comfortable with the bureaucratic procedures which are likely to attend formal structures: the voice heard will be the voice of experience committee member. Again, not every group will be visible enough to fall within the ambit of any particular process of needs assessment. Finally, self-help groups are often their nature the preserve of activists and enthusiasts, and thus exclude others. What is more, such groups often - indeed, inevitably - live with great internal pressures (key members die): thus they can be unstable, and find it hard to be a consistent collective voice.
  12. There is an additional source of information about the character of those living with the virus: that is, information gained in the negotiation of specific care-packages for individuals. Ideally this information - with a specific regard to the wishes of those concerned - should be fed back up through the system for the purpose of refining approaches to needs assessment and identifying groups or even individuals who could and should be drawn into the process. This may well involve advocacy of needs and wishes by a care worker as much as an individual's active involvement.
  13. Having identified those living with the virus different means will have to be adopted to allow them to have a voice - including advocacy (which is, for these purposes, to be clearly distinguished from representation).
  14. We recommend that the ideal of the Paris Declaration must be matched most of all by realism. By no means every person living with the virus will wish to have a public voice: it is nevertheless in the spirit of the Paris Declaration for as many people as possible to be given, and to find, a voice. All will have needs, and those needs must be perceived as including the capacity to be heard insofar as they wish to heard.
  15. This aspiration will best be realised by a variety of approaches:
  1. through the identification of individuals themselves, and a willingness to give due weight to their voice when and how they feel able to be involved;
  2. through the advocacy of the needs and wishes of individuals by others, and particularly by health and care workers;
  3. by the expression of needs and wishes through collective groups such as self-help groups, or community groups;
  4. through the process of needs assessment - particularly that commissioned by the purchasers of services - for the purpose of representation as well as the provision of services; and
  5. through the representation of people living with the virus on formal policy-making, or consultative bodies.
  1. It is important to distinguish between democratic structures involving those living with the virus - which are likely to play only a limited role, since they are expensive and tend to follow the needs of the majority - and the development of a range of different and transparent means of genuine consultation.
  2. All side must show commitment in the process, not least those most directly affected: people living with the virus may have to undertake responsibilities as well as making demands. The concomitant is that all other agencies involved must support them in their efforts, an accept the necessary diversity.
  3. This will never be perfect, it will never be easy, and it will never be comfortable. The diversity is likely to increase rather then diminish. It is however change which, if met in the area of HIV/AIDS, may provide models for other conditions.

THE INVISIBILITY OF SOME GROUPS

  1. Considerable care was taken in the present study to interview woman infected with the virus. None of those interviewed had children infected, though some were mothers; none came from an ethnic minority. There was an awareness of both these categories, but no interview could successfully be arranged with any individual. This demonstrates the limitations of the present study, but also - and in itself - how certain categories may be invisible, even if the are known to exist, and are sought out. The numbers concerned may be small - although, again, it is hard to say even that with certainty. That is the problem.
  2. Where infected woman were interviewed they made a point that the majority of services seemed to be designed for gay men or drug-users. Such services did not suit woman or children. On the other hand, services - such as the fostering of children - were not being planned on the basis of the actual need of the woman concerned. For example, and at it most serious, all infected mothers felt the need for certainty that their children would be cared for, in the event of their death. Service providers would not however focus on the problem, but only on issues such as short-term respite care, which were similar to those experienced in relation, for example, to gay men.
  3. Proper provision for children would involve - and was perceived as involving - social services, health services, and education services. There was evidence of problems here. One woman had been refused a nursery school place for her child until the child was tested for HIV. She saw this as insensitive, to put it mildly. Others said that schools were more concerned with the reputation of the school than with the needs of the specific children: schools did not want anyone to know that a child was even remotely affected by HIV.
  4. Workers for a child-care agency - who were all fostering children affected by the virus - reported that statutory providers seemed unprepared to deal with the problem on the basis of the needs of the child concerned. There was no consistency of policy between adjoining local authorities: in one instance, where a fostering family moved a few miles: they moved from having three social workers connected with the case (itself a problem) to having none.
  5. In such circumstances there is a need to consider the child, the natural parents, and the foster parents. This will inevitably be complicated.
  6. The problems connected with heterosexual men are different. Much publicity has been given to the lack of evidence that the virus is affecting heterosexuals, beyond drug-users, certain ethnic communities and haemophiliacs. again the lack of evidence is a limitation of the present study - no heterosexual man who was not a drug-user was interviewed - but also illustrates how difficult it is to reach heterosexual men infected with or affected by the virus. There is evidence from Scotland which makes this cause for serious concern; in the second quarter of 1995, of 49 reported infection, 35 were men, and of these the probable cause of infection was heterosexual sex in 18 cases; whereas sex between men accounted for only 15 cases and injecting drug use 6 cases.
  7. Without minimising in any way the needs of those groups at present most affected by the virus - gay men, for example - it is important that the development of policy in this area recognises that other groups may well have to be provided for in the future, and that there may at present be significant populations, isolated groups and individuals, who need a voice no less than anyone else.
  8. We recommend that special attention be paid to the development of methods of identifying where woman, children and heterosexual men are living with the virus and ensuring that they are involved in the provision of services and development of policies relating to HIV.
  9. In this context, to much reliance should not be placed on existing organisations, and in particular self-help groups, important though their contribution may be, for not all people with the virus will wish to express themselves through the medium of self-help groups (and specifically not through groups, the majority of whose members are gay). In such cases, purchasers and providers of services are likely to have to play a more active role in giving those infected a voice, whether individually or collectively. This may well include active encouragement of new forms of organisation, including - paradoxically - new self-help groups.

THE DIVERSTY OF ORGANISATIONS PROVIDING FOR, AND REPRESENTING, THOSE LIVING WITH THE VIRUS

  1. That said, organisations within the HIV/AIDS sector are diverse - mirroring much of the diversity of those living with the virus and affected by it - and this presented itself to interviewees in a number of ways.
  2. Some of the diversity is very basic. Organisations range from the very large to the very small. Some are driven by those with the virus ("of" organisations) while others are run on behalf of those with the virus ("for" organisations'); and some fall easily into neither group, notably where they contain and serve people affected by the virus - for instance, trough family connections. Some organisations were set up specifically to respond to HIV/AIDS, where others have responded to HI/AIDS within wider purposes. Some organisations rely on volunteers, some have paid workers, some have both.
  3. There is also the traditional distinction between the statutory and the voluntary sectors, which is now to an extent being replaced and overlaid by the distinction between purchasers and providers of services. By no means all organisations which are important to people living with the virus fall within these oppositions. For example, some organisations receiving funding from many different sources, to fulfil a number of different functions.
  4. In addition, there is a distinction to be drawn between work towards prevention of HIV/AIDS, and the provision of services for those living with the virus. Very often organisations will be involved in both. In being so they serve needs which are by definition distinct.
  5. Individuals living with the virus have widely differing experience arising from this diversity. In some localities options are limited, and do not suit a sizeable number of those living with the virus. This is not necessarily a function of the size the infected population; a small number of people living with the virus can have a good range of options, whereas a large number in a specific locality may have very little choice at all. At its worst, a relatively large number of people in one place can rely entirely on one clinic.
  6. On the other hand, where there is a sizeable population, and a wide range of services, individuals may be bewildered and not know where their own needs can best be met. What is more, they perceive some organisations as competing for clients in order to justify the maintenance levels of services, or indeed justify funding applications to ensure the very existence of the organisation.
  7. The consequences of diversity for organisations are thus very significant also. Some organisations - particularly small ones - which sere specific needs very well find it hard to maintain their niche (and particularly their funding). Regrettably examples were given by interviewees of organisations which seemed to be very good at maintaining themselves, but not very good at serving those living with the virus.
  8. Diversity is a good thing. Confusion is not. Those who suffer through confusion are, first and foremost, people living with the virus.
  9. The division between purchasers and providers of services, which lies at the heart of Government policy, is I principle well-adapted to meet the aims of the Paris Declaration. It is therefore in the operation of the system that those aims will be met, or will fail to be met.
  10. Each player has a role. Our recommendations therefore fall into three parts.
  11. We recommend that people living with the virus should be encouraged to engage with the specific organisations whose purpose is to provide for them. In the end, this will depend on their willingness to speak up. They have to feel, if they do speak up, this will work.
  12. We recommend, in the light of the above, that organisations ensure that they are focused on the needs of their services-users. That focus has to be balanced between two considerations: on the one hand, the organisation must be clear about what it exists to do for people living with the virus - few organisations, with the best will in the world, can do everything and anything: on the other hand, they have to be responsive individual clients, and should have clear mechanisms for consulting with their clients or for dealing with their clients' complaints.
  13. This is an important balance, but not one which is beyond either the smallest or the largest organisation To take a simple example: a client may request service where that request is met by referring the client o to another agency.
  14. It is crucial that organisations do not feel proprietorial about their clients and that they do not act as though they are in cut-throat competition with other organisations. thus, in focusing primarily on the needs of clients, organisations working in the field have responsibilities also to other organisations. In a addition, they have responsibilities to purchasers and funders. Providers should recognise that they are in equal partnership in the provision of services for clients with purchasers and funders.
  15. We recommend that the purchasers and funders of services have a crucial role to play in establishing the proper climate in which effective contracts for services are made. they should invest time and effort in getting to know both those whose behalf they are purchasing or funding services and the organisations who are providing or could provide those services.
  16. They must have a healthy relationship with their providers, and encourage them to have a similarly healthy relationship with each other. market forces in this field will operate better through healthy relationships than through cut-throat competition.
  17. All accept - or should accept - that purchasers and funders will at times have to make difficult decisions affecting providers of services. It is nevertheless for purchasers and funders to recognise the equal partnership referred to above. The latter are not supplicants, nor should they be put under undue pressure - for example, through tendering or monitoring mechanism - in the contracting process.

THE ROLE OF GUIDELINES AND POLICIES IN ORGANISATIONS WORKING WITH THOSE LIVING WITH THE VIRUS

  1. It is hard to identify from the present study whether, where clients perceive organisations as meeting their needs well, this is as a result of the consistent and conscious development of policies and application of guidelines, or whether it is simply second nature to those working in such organisations.
  2. There was a good deal of concern among all classes of interviewees, that policy and practice were often disconnected. Policy was sometimes given from on high, because purchasers or commissioners required the institution of a range of explicit policies - whether relevant to the organisation's actual activities or not - as a condition of funding.
  3. Again, on a very basic level, people living with the virus and workers in organisations providing services often perceived policies or guidelines as unusable or irrelevant for simple reasons: because they were to long, turgid, or expressed in jargon which excluded people. This was most acute where service-users were invited to be part of a formal consultation process, or to sit on management bodies.
  4. By the misuse of policy, the principle of service-user involvement is reduced to mere rhetoric. Some service-users even reported that they felt it irrelevant to organisations which were more concerned with their own internal concerns, or - more usually-meeting the policy and performance demands placed on them by purchasers and funders.
  5. Policy and guidelines should be the servants of practice. They should have clear benefits both for service-users and for organisations serving them, whether directly or indirectly. It is important to be clear about their limitations. They rarely drive god practice. That comes from deeper sources such as fundamental concern for service-users, sound training and basic professional ethics. The use of policy and guidelines is to reinforce good practice by identifying the bad practice. Policies and guidelines have a place where they can be a clear and constant point of reference for everyone involved.
  6. Long and turgid documents covering every possible eventuality are counter-productive, especially for people living with the virus, and for smaller organisations. No-one reads them, so no-one uses them. Essential concerns are lost in a welter of detail.
  7. What also appears to be missing in many organisations is a recognised person - who will normally be a manager - who is accountable for the use of policy to validate good practice, and to identify, challenge and change bad practice.
  8. We recommend that were explicit policies and guidelines exist within and for organisations working with people living with HIV/AIDS, they should be:
  1. simple, clear and usable;
  2. recognisable for the benefit both of the clients and the organisation concerned (and not principally for the benefit of external organisations such as purchasers);
  3. overseen by a clearly-identifiable and accountable person within the management structure of the organisation;
  4. capable of being appealed to by anybody connected with the organisation - clients, volunteers, workers, and purchasers (where applicable);
  5. capable also of being challenged both by service-users and by workers.

CHANGING ROLES

  1. Many interviewees discussed how roles in the HIV/AIDS sector had to change.
  2. Thus, a significant number of people with the virus expressed the feeling that health workers were only interested in them as people who were ill, rather than as people who were working to stay well.
  3. There is potentially a fundamental shift in perception here, which is relevant to the whole of the health service: medical services which are concerned with keeping people well, rather than dealing with them when they are sick.
  4. Again, significant numbers of people with the virus wanted more information, and time to absorb it, so that they were able to make more informed choices about their own treatment, or the services available to them, rather than simply be given a prescription or care package. Where the latter happened there was evidence that individuals would simply - and silently - not take medication in an act of passive rebellion, or would be out when care workers called. On the other hand, other individuals were consciously deciding not to begin (sometimes expensive) drug regimes, but to keep the position under review with their doctor; or else they were happy to be in touch with providers of services, so that they would know to call on them when they felt they wanted to.
  5. There are two different models here: active partnership, to which both sides are committed; and passive acquiescence, where services are perceived on some level as an imposition and often resisted.
  6. There was express concern among some of those with the virus that, if they tried to take an active role, they would be regarded as trouble-makers and would lose the sympathy of health or care workers. Their emotional vulnerability found it safer to adopt a passive role, even where this passive was resistance.
  7. Many of those with the virus would welcome confessions of fallibility, particularly from doctors. They did not want the lack of medical and scientific knowledge about the virus to be hidden from them in an effort to give them confidence.
  8. There seemed to be a perceptible difference between men and woman in this regard. Men tended to be more passive in receiving help, once they had overcome the barrier of admitting that they actually needed it; woman seemed culturally more used to managing the health of themselves and others; in particular their children, and so had a broad view of the possibilities and were frequently more demanding.

THE LIMITATIONS OF COMMUNITY-BASED AND SELF-HELP ORGANISATIONS: BOUNDARY DISPUTES, PERSONALITY CLASHES

  1. Specific problems relating to community-based and self-help organisations were expressed by almost all those interviewed. These were normally - or ultimately - related to the human failings of those in the organisations concerned. Frequently, this dissatisfaction was echoed by others actually working within organisations.
  2. It was not that people living with the virus were making unreasonable demands. Many were indeed angry and vulnerable, and a few might be unreasonable; but the evidence was that there were many problems beyond this group.
  3. Some infected or affected by the virus who had themselves been activists had left organisations because they could no longer bear to be involved. Others wished to become involved again, but were clear that things would have to change before they do.
  4. Criticisms centre on the inability of organisations to contain and resolve personality clashes; on the conflicts arising from philosophical differences which might well not be germane to the needs of those living with the virus and which, in any event, wasted energy and resources; and - particularly within self-help organisations - on a lack of clarity about how an individual's personal contribution, and the meeting of personal needs, could and should be reconciled.
  5. On the positive side, much of the dissatisfaction expressed is at once a symptom of the maturing of the sector and the organisations within it, and in itself part of the necessary pressure which will ensure that that process continues.
  6. Nevertheless all possible means must be found to avoid these pressures, and help their resolution. In this purchasers and funders have a crucial role. They have resources and access wider experience which can be of great assistance to organisations - and particularly smaller and newer organisations - serving the needs of those living with the virus.
  7. We recommend that purchasers and funders should consider it part of their function to foster and develop the organisations providing services. This will entail:
  1. ensuring that they do not put organisations under unreasonable pressure by their funding and monitoring mechanisms;
  2. encouraging the internal development of organisations, if necessary by financial support, whether to provide training, the sharing and exchange of information and experience, or access to equipment or professional services;
  3. making purchasing decisions transparent.
  4. Other organisations may also have a role to play in this - for example the National AIDS Trust and or the National Network of Self Help Groups.

THE COMPLEXITIES OF CONFIDENTIALITY

  1. It is generally acknowledged that confidentiality is a crucial concept. Research for the present study also showed that there is considerable confusion about how the concept is actually used. The confusion is felt both by individuals and- particularly people infected with the virus - and organisations - self-help groups and providers of services.
  2. Many of those interviewed said that the application of the concept needed re-examination. They were unclear why it was being used in certain situations. For example, someone newly diagnosed may be advised by a doctor or social worker or health advisor or nurse not to tell anyone their health status. The justification for such advise is that the person may, at a very vulnerable time, immediately encounter prejudice or discrimination.
  3. The undesirable aspects of such advice as perceived by those living with the virus are serious. They are deprived of choice from the word go. They may be led to believe that discrimination and prejudice are inevitable as a consequence of diagnosis. They may subtly be put into the power of those giving the advice who become the only people to whom they can turn. This establishes at the outset a dependency on a select group of insiders and can cut individuals off from natural social support networks they already possess - family, friends, work-mates. It discourages them from approaching for themselves a wider range of organisations who might be able to support them - self-help groups, for example - and particularly those who are not specific to the HIV/AIDS field.
  4. One consequence felt by individuals was that the power of referral lay with those advising them, not with themselves: examples were given of refusals to refer because the adviser felt that the group as 'not right' for the individual, or he or she would was 'not ready' for that sort of support.
  5. More absurd examples were given. One interviewee reported that he gained a good deal of support from those he met at the clinic - staff as well as other clinic attendees. They new each other's lives and discussed them; but only within the clinic. Then he started seeing the same people in, for example, the supermarket. Yet, because of the emphasis on confidentiality, he felt inhibited about even greeting them.
  6. People working in organisations were also unclear about how the principle of confidentiality should be applied in practice. There is a distinction between the proper passing-on of information, and gossip between workers within organisations. On the one hand, the latter can clearly breach confidentiality; on the other hand, to much concern can inhibit the proper transfer of information, to the clients detriment.
  7. Knowledge of an individual's health status is a personal burden for others apart from themselves - for example, family members. If confidentiality is over-emphasised, individuals who are in on the secret carry an enormous burden, and for those who are not infected that burden can go for a long time. It may make it difficult for families and friends to come to terms with what has happened, even after the death of the individual with the virus. They still carry the burden of secrecy.
  8. A number of interviewees felt that volunteer-based organisations misused confidentiality, turning it almost into a weapon. This was most notable in relation to organisations (the majority) concerned both with those infected and those affected by the virus. By being unclear about the difference (on the grounds of confidentiality) those organisations, it was suspected, boosted their figures of service-users, for the purpose of presenting themselves to funders. In the process the focus of their services on those actually living with the virus was lost.
  9. One example given was where services were available to those both infected and affected by the virus. Waiting lists for services from the agency were therefore clogged by people who were - or were suspected to be - affected rather than infected. In such circumstances it was impossible to prioritise the needs of infected people.
  10. The solution to many problems relating to confidentiality ultimately lies with infected individuals: if they are willing to make their status known, their needs can most effectively be met. Organisations can play a role in supporting this, by applying the principle of confidentiality in such a way as to emphasise that it includes a range of possibilities of disclosure, as well as non-disclosure.
  11. Anonymity, confidentiality and secrecy must not be confused. At times it will be appropriate to use personal knowledge of an individuals health status, but in an anonymised form - for instance, as in the present study, or where necessary in the use of Soundex codes for the purpose of the monitoring of services. At other times, information about an individual will need to be protected: this should be done with constant reference to the wishes of the individual concerned.
  12. An atmosphere of obsessive secrecy feeds the perception that those living with the virus are a race apart, a secret society cut off from the mainstream. Nobody learns anything. The avoidance of possible discrimination and rejection may be bought at a high price of isolation. This cuts both ways. Not only is the individual isolated, but those around them - probably unknowingly - may be cut off from them as if by an invisible wall, from the contribution that they may be able to make to wider society, and from learning more about the virus as it actually is rather than as an unspeakable demon. The last point has obvious implications for health education and promotion.
  13. Confidentiality is not a unity, nor is it static. Individuals living with the virus should have the power to decide who is told, and when. Health workers and social workers should not assume at any stage that that information should be suppressed, but should always advise on the options of disclosure or not to the individuals concerned, especially in the earliest days of diagnosis. The earliest days set the pattern for what follows. Secrecy presupposes - and can therefore create - rejection and isolation. The danger of such rejection and isolation is better countered by providing solid networks to give the individual support in facing prejudice if it were to occur, than by trying to avoid it by a blanket use of confidentiality.
  14. The issue of confidentiality is central to the concerns of the Paris Declaration. If total confidentiality were maintained about all those living with the virus, it would be impossible for them to have any voice in policies and the provision of services relating to them.
  15. We recommend that the issue of confidentiality in relation to any individual should be:
  1. discussed from the first days of diagnosis in such a way as to emphasise the fact that any information about health status belongs to the individual;
  2. discussed in such a way as to highlight the advantages as well as disadvantages of disclosure in any specific circumstances relating to the individual;
  3. kept under constant review with the individual;
  4. according to normal professional standards of confidentiality (relating to health records) and not treated a special case.

Appendix

Methodology

  1. This report is based on informal interviews with people who are living with the virus, paid workers from self-help groups, community or small provider organisations working directly with people who are infected, and with people from larger service providers. In most cases, these interviews were one to one, in all cases they were bound by confidentiality, and in some cases also by anonymity. In one case, a volunteer was present at the request of the person being interviewed. On five occasions, more than on person was interviewed at the same time, from the same group. Early findings were verified with people from other parts of the system
  2. A total of fifty interviews were held over a period of three months, in Belfast, Dundee, Edinburgh, Glasgow, London, Sheffield and Worcester.
  3. An effort was made to find and talk to people who had never been attached to any kind of support group or organisation, as well as those who had been at some time, or who were now. In order to achieve this local organisations who were able and willing to use their networks to identify people from this range of experience were contacted. They were also able to talk to them about the purposes of the research, and to describe the potential benefit of becoming involved.
  4. Of all those approached to become involved in this work, one organisation did not return calls or respond to faxes, and three people did not turn up for arranged interviews.
  5. The early interviews were used, in part, to establish key issues, and to judge the relative merits of taping the notes. It was decided that note taking was the most effective way of recording discussions. In all fifty interviews, key issues were agreed at the end of each of meeting. Notes were written up under those key issues, returned to the interviewee for comment, amendments made where necessary, and a copy of the notes returned. These form the basis of the findings.
  6. Feedback and consultation meetings have been planned for all the sites that took part in this research.
  7. The individuals came from a broad range of backgrounds and experiences. At one end of the spectrum, were people who were living very isolated lives; who felt cut off, unsure of what their rights and entitlements were, and who had no links with any kind of support group, depending on small, front-line, practical service providers to act as advocates. Further along the spectrum, there were people banding together in order to help each other and to exert pressure on the system in order to get what they knew, or thought, they were entitled to. In most cases, these were people new to activism, driven to it out of need. In some cases, this need was a result of wanting to focus their lives, or, in other cases, to compensate for the real perceived unhelpful attitudes of existing organisations or individual workers.
  8. Further along still, were people who had been activists, who were now absenting themselves from this for reasons which included their failing physical health, and having had enough of the politics of gay and/or AIDS activism. At the furthest end of the same spectrum, were people with a long involvement in activism, both very public and very discreet who were well in control of their lives, and who were able to offer a more reflective view of the issues which needed resolving than those who were still having to struggle (for whatever reason) to establish and maintain a balanced sense of themselves and the virus.
  9. As well as people living with the virus interviews were held with people working in small organisation that could be described as community based or small voluntary sector service providers. These people included paid workers in a self-help group, the only paid worker in a small, reactive service provider, and the heads of larger service providers.
  10. A paper was drafted, outlining key points and proposals for action. Discussions on this were arranged by the UK Coalition. The same key points and proposed action was then discussed with colleagues from the Department of Health. Comments from these discussions have been taken into account in writing this report.

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The Patient can be as knowledgeable as the expert, but is uniquely placed to have a holistic view of their condition

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