I- INTRODUCCIÓN
5.1. PARTÍCULAS SIMILARES AL VIRUS: VLPS (VIRUS LIKE PARTICLES)
• 4.3.1 the challenge of delivery within spatial diversity
• 4.3.2 responding to diversity of personal circumstance and need
• 4.3.3 immigration – the long term challenge of transient needs. Three of these issues can be seen as key contentions in which there is a spectrum of opinion, often polarised into strongly and significantly contrasted viewpoints. Fascinatingly, these opinions do not split neatly along any conventional or stereotypical line. It is not a matter of providers against users, professionals against volunteers, medics against social providers, men
4: Implications - the priorities
Section 4
Section 4
Diversity rules, and the real challenge is that management, resource and logistic
constraints, particularly in the formal sectors, make it difficult to respond by
offering diverse services that are made available as a matter of personal choice.
against women, or locals against immigrants. The simple fact is that opinions differ, significantly. Diversity rules, and the real challenge is that management, resource and logistic constraints, particularly in the formal sectors, make it difficult to respond by offering diverse services that are made available as a matter of personal choice. The remaining three issues can best be viewed as underlying dimensions which colour and constrain the needs of the users and the delivery capacity of the providers. They are complex issues, often buried deeper than the key contentions, but they tend to attract consensus rather than contention. While this convergence should in principle be a spur to action, it can have the opposite effect – with a sense that the issue is known, respected but to an extent taken for granted as a given. We attempt to indicate that even with these externalities, it is possible to devise interventions which address needs more effectively than is currently the case. To do less is to risk failing in the mission to provide equitable access to care and support.
4.2 The key contentions
4.2.1 Specialist versus generalist models
of care and support delivery
No other issue comes close to this in engaging the passions of the local community of service providers and users. It seems to be impossible to talk to anyone about HIV/AIDS without the conversation drifting towards the contention between specialist and generalist provision. Indeed, the debate seems almost to have assumed iconic status. The loss of a dedicated post or function is seen either as indicative of a downgrading of the importance of PLWHA in a cynical withdrawal of support for financial reasons, or as a stride forward in according them the mantle of normality and integrating them fully into the community of those living with manageable health and social problems. Both viewpoints serve as flagships around which other issues tend to cluster, and the two models are coming to serve as rallying points for opposing philosophies.
“The loss of specialist post? They use the argument that other illnesses don’t have them so why should HIV, rather than saying, we have a gold standard lets raise all others to the level of the HIV care given. We have lost many people. Maybe we don’t need as many hours but they are still needed, so the voluntary organisations end up picking up the issues/problems instead. They are often having to deal with very complicated issues that a case worker should be dealing with. [NHS provider]” “A generalist approach is more appropriate. Years ago there were more issues about HIV, now with treatment available, it is a chronic condition. It should not be different from other chronic conditions. It is manageable condition. It should not be specialist. [NHS provider]”
As has been mentioned above, at first sight the centre ground appears largely empty, and viewpoints have
polarised to the two extremes: either a fully specialist set of services geared for PLWHA and delivered specifically to them, or a wholly general service in which PLWHA seek to satisfy their needs alongside all of those other groups who require care or support. However it was also suggested more than a few times that at the time of diagnosis, specialism is needed, then over time, the users can tap into the generalist services they require. Moreover, the suggestion is definitely towards having a person who is specialist and can signpost through the complexities of services currently available. And the supporters of the two models are drawn from across the whole community: there are providers in both camps and there are users in both camps. Clearly, whichever way the issue is resolved, there will be a sense of winners and losers unless great care is taken in promoting stakeholder engagement in any changes take place. At the same time, the breadth of support for each of the two models is such as to suggest that each has real merit, in which case a composite provision of some sort might be seen as an appealing way forward. The starting point is to consider in a little more detail what each model represents.
The specialist HIV service: unique provision
for a unique condition
This approach is based on the premise that HIV/AIDS is still a unique medical and social condition, with significantly different implications to other more-mainstream illnesses such as cancer or diabetes. On this argument, HIV care should be given in specialist centres by people who are specialists in the field. Because absolute numbers of PLWHA are low in the county, it is difficult for individual GPs and other providers to maintain this level of expertise in HIV, so specialists are required. Both social and medical care should be provided by people with special skills and knowledge. For social care, the specialist model is better because clients can contact one person who is an HIV specialist worker and will not need to disclose to number of people. There will also be a continuity of care which will reduce the need for repeated disclosure and, at the same time, build confidence and thus adherence in what are often marginalised groups of people. For health promotion, it remains important to treat HIV as a special issue and avoid allowing it to slip down the agenda on the basis that improved drug therapies are now life-maintaining. Even if there is no specialist worker available, it is still very important to have a named/dedicated HIV person. These people should have more HIV-related training and it should be easier to access these people for clients (without need to disclose to many people).It is important to appreciate that this “special status” is in part a legacy of a past in which HIV/AIDS was a precursor to a premature death, or to a precarious and difficult survival on a very challenging therapeutic régime. It can also be recognised that the loss of a “special” designation and provision can be interpreted by both participating providers and users as a painful and potentially damaging downgrading of status.
“Previously clients did not want to be singled out as being different, but now they are not, people say why don’t we
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have specialist services. Patients are feeling uncomfortable in non-specialist settings. [NHS provider]”
If this was all that was involved, then there would be solid grounds for suggesting that with strong stakeholder engagement, it would be possible to migrate towards a more generalist/holistic pattern of provision adjusted to the different circumstances of the twenty-first Century. But this is not all that is involved: two of the underpinning arguments in favour of specialist provision cannot so easily be dismissed.
First, the desire to be dealt with by medical experts (whether consultants or nurse specialists) is high amongst PLWHA, and there is some logic in their wish. In an ideal world, everyone would receive care and support in a context of expertise and excellence, but such a world is unrealistic. The norm in most contexts is to deliver services through personnel at a range of skill and experience levels, with the highest levels being reserved for cases of exceptional challenge or complexity. This graded model works well in most cases, but HIV/AIDS has particular medical requirements relating to the pace of development of new drugs and regimes, and to the relatively small number of patients (which means that many of them will have little chance of accessing an expert without long-distance travel, and the locally- available “general” providers will have little experience of their condition and the appropriate responses. One outcome of the gradual shift of care from consultants to GPs is that almost any illness of PLWHA may be
diagnosed as AIDS-related, even when it is not. It is probably the problem of low numbers of PLWHA that fuels the widespread (though in absolute terms, limited) response of turning to specialist London clinics for what is seen as “cutting edge” knowledge and service. This perception that there may be better care available elsewhere (London and Brighton being most often cited) is a characteristic of the gay community, particularly those diagnosed many years ago. The immigrant community has demonstrated a much greater tendency to be satisfied or very pleased with locally-available services. The associated debate about the possibility of establishing a Centre of Excellence in Hampshire is considered separately below.
The second residual challenge countering the move towards mainstreaming HIV/AIDS care and support is much more likely to concern immigrant PLWHA, and involves the ongoing trauma of stigma and disclosure. Here, there is a stark disagreement between a growing number of providers who assume that stigma (and associated demands for absolute confidentiality) is becoming less of an issue, and a still-substantial number of PLWHA who argue the exact opposite. The survey has revealed shocking tales of a casual and dismissive approach adopted in communicating
diagnosis and in handling patient confidentiality which are too widespread and personalised to be cast simply as urban myths. While the gay HIV+ community in the main urban centres does appear to be experiencing a slowly-reducing level of stigma, this is absolutely not the case for many of the immigrant groups, and remains more problematic in the rural areas (including the whole of the Isle of Wight) where “everyone knows everyone else”. It is difficult to conclude other than that the move towards mainstreaming HIV/AIDS care and support will involve an escalation of confidentiality breaches as patients are forced to disclose to increasing numbers of generalist providers. And it is clear that in some cases these breaches will create catastrophic negative impact for extremely vulnerable individuals, particularly in the immigrant community.
The generalist HIV service: mainstreaming and
normalising
This approach is based on the notion that in the UK, HIV+ status is now a chronic but manageable condition and thus should not require highly specialist facilities in order to provide routine treatment. (It is, of course, recognised that there may be extreme or complex cases that will always benefit from referral to specialists.) This suggests that PLWHA should not be treated differently from people with other long-term (chronic) conditions. For service users, this mainstreaming approach is beneficial because it avoids labelling and marginalising them into an “AIDS ghetto” mentality. In principle, they should increasingly find that they are being treated equally, and it should be easier for them to find employment and win a full integration into society. Thus, mainstreaming of AIDS should help to reduce stigma, which is currently exacerbated by the fact that PLWHA are seen as different because they are given specialist care in specialist clinics. Mainstreaming will also help to reduce the isolation that is fuelled by specialist services. HIV-related symptoms cannot be predicted easily: they may arise suddenly, and access to general medical services (rather than periodic HIV clinics) should reduce delays for patients seeking treatment. There are also arguments of operational efficiency and cost-effectiveness for providers if they can reduce the need to run HIV-specific services. This does not need to imply withdrawal of resources from PLWHA (though the loss of ear-marked funding promotes such a perception), but rather that resources can be used more effectively and thus develop more effective services. The role of the GP is a particular case in the consideration of specialisation and the mainstreaming of HIV. There is support for the notion that, in principle, GPs could assume routine care once diagnosis had taken place and the appropriate therapy had been established. However, there is also real concern that the handling of records in local surgeries is a challenge to personal confidentiality – and a worry that GPs might not have contact with the most recent therapeutic trends.“I changed my GP for the one who was interested in
The survey has revealed shocking tales of a casual and
dismissive approach adopted in communicating diagnosis and
in handling patient confidentiality which are too widespread
and personalised to be cast simply as urban myths.
HIV, and it was a good move. My friend told me about this GP. Negativity comes from those GPs who are not informed.” [PLWHA]
“My new GP is supportive, I changed GP, went to another practice which was recommended by GUM. My current GP is interested in HIV.” [PLWHA] “None of the GPs had proper HIV training …. I went to see my GP for side effects, the GP did not have a clue about what was going on, was not well-informed about HIV.” [PLWHA]
“I went to see GP because of side effects, because I was vomiting everywhere. GP told that I should stop taking all the medication. However, I knew I should not do that, I should take my drugs, so went from the GP without any help, not knowing what to do.” [PLWHA]
The philosophy of normalisation is very broad based. At its heart, it challenges the value of using the “provocative/ evocative” label of AIDS, since increasingly the patient’s HIV+ will be managed to avoid the development of AIDS. Normalisation starts at the level of testing, which are becoming increasingly routine in the case of HIV – particularly in the context of pregnancy and ante- natal care. Tests are also increasingly being offered as a package, with other tests being added to HIV, and the concept of opt-out is gradually replacing the conventional notion of opt-in (ultimately challenging the value of the “voluntary testing” notion). Nevertheless, there is support for the notion that a mainstreaming of HIV/AIDS does not necessarily imply downgrading the role of specialists, nor suggest that core social services are no longer required.
“There is clear value in dedicated HIV specialist people. When they had an HIV social worker, it took a lot of work load from consultants (letters to solicitors, housing, etc.). Now it is down to doctors. It would probably be good to have designated social worker for voluntary groups. Better to have a social worker who would cover bigger geographic area, than to wait until critical number will be accumulated. [Consultant]”
Quite apart from the entirely valid and proper arguments in favour of economic and operational efficiency, mainstreaming of HIV has a strong moral foundation in the desire to allow PLWHA to move forwards into full integration. But such a move will not be without its stresses, and a successful transition that minimises user backlash will require stakeholder engagement in organisational strategy design at a level that is not currently available. Not only do the users need to buy into the advantages of change, but the providers need to confront the potential negative impacts of the major residual issues. In addition, there will need to be a substantive and sustained programme of curriculum and professional development if general providers are to acquire the knowledge and skills required to address the needs of PLWHA – which will remain “special” in important respects.
The hybrid HIV service: towards a hierarchical
organisation of HIV support:
The point has been strongly made that stakeholder views on the specialist/ generalist debate polarise starkly into two largely exclusive camps, but perhaps even this perception of a polarisation is little more than an unfortunate illusion. While the adherents of the two models support their respective views stridently, each group actually acknowledges that in practice a hybrid model is inevitable. Those who promote a specialist service with specialist posts also welcome the idea of access to the full range of “normal” services” without the stigma of an HIV/AIDS label. Those who cherish the progression to mainstreaming fully support the notion that there will remain cases that require specialist/consultant attention (as there are with every condition).The hybrid HIV service implies enhancing specialist services for those in greatest need but increasingly delegating routine aspects of care and support to well-informed general providers within a framework of meticulous observance of confidentiality. It must not be allowed to be introduced simply as a corner-cutting withdrawal of named posts and specialist services without associated development and resourcing of alternative arrangements, and it cannot be effectively implemented without a programme of professional training. The still- massive implications of stigma will require formal and monitored response, as will the need greatly to improve communication to PLWHA about the range of services available. There is currently a major deficiency in this area: no-one appears to have knowledge of the range of requirement and provision. This is of particular importance at the stage of communicating the initial diagnosis: in some areas this is handled sensitively and well, but in other areas it is not and there are signs that some providers are slipping into the unjustified notion that HIV+ status is no longer “a big deal”. It is, and it will remain so, and the people involved remain vulnerable, confused and ill-placed to take control of the complex process of building an effective response to their illness and its social implications. To relegate this need to the level of “You’ll find a leaflet on the rack outside” is cruelly insensitive, and does not meet the required standard of care – especially since there often isn’t a leaflet!
Despite the inherent threats, the hybrid model retains some significant logic and is a realistic option for consideration. It involves responses such as:
• Reviewing the relationship between Health Advisor and Nurse Specialist posts in order to identify the optimum balance between maintaining a separation between the roles and accepting that