HIV treatment advocates network
HIV treatment advocates network
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Friday 22 January 2010
Paul Clift
There are several models of this and none of them is perfect; each has its own strengths and its own weaknesses. The literature of Patients Involvement in medical journals (for example the British Medical Journal - BMJ) is extensive and is continually revisited and updated. Rather than repeat those articles, I am outlining here a few points that any advocate (actual or potential) should bear in mind, drawing on some of the concerns and questions that arose at the UK-CAB Advocacy Training Day 22nd January 2010. After this, I give a summary of how we developed a system of involvement at the HIV clinic in Brighton - we found that it worked very well, that it was right for us. But it is not the only way; the nature or character of advocacy varies according to a range of variables: the personality of the advocate; her/his awareness of a range of issues (social, political, medical...); the demographics of the Patients Cohort; professional/clinical staff attitudes; available resources, including available time; and much more! The point is to regard the Brighton example as an illustrative point of departure, and to adapt it to suit local conditions.
An advocate or spokesperson of an HIV patients group will have a broad range of people to represent, and they have only one thing in common: at some point in their lives, they have been diagnosed with one particular infection. A typical HIV clinic nowadays will have a demographically complex patient cohort, and it is central to the advocate's role that she or he acquires an awareness of this complexity, not least because some surprising events can arise from it (for example, while I was Patients' Rep in Brighton I was asked by a black UK gay man for a good local GP because the first one he saw questioned his immigration status and hence his eligibility to 'free' healthcare even though he was born and fully resident here).
The key underlying principle of good advocacy is to avoid representing only people like oneself, whether consciously or by default, and to engage with representing the whole body of patients. This will involve doing some homework into, for example, gay men's issues, women's issues, African issues. This is too complex a topic to go into here, not least because all of these issues strike out in their own directions and cross over each other at various points. The thing is to try to attend seminars, conferences etc that address some aspect of these issues, and to allow lessons learned to inform your work as an advocate:
In short, a patients' advocate is aware of, and alert to, the experiences of the broad range of patients; she or he engages with, and represents, them without favour and without prejudice.
Good representation does not mean simply repeating parrot-fashion what persons x, y, z have said, even when these are contradictory; it involves using one's judgment, too. For example, I have been told by some xenophobic white gay men that black African people should not be using 'our' NHS; I've also been told by some homophobic persons that gay men 'or whatever they call themselves' receive too many HIV services. An advocate for a broad HIV cohort will have to make a decision in situations like this between representing the entire cohort (and being ready to challenge prejudice, whoever voices it) or only a section of it (taking one side against the other). As the latter goes against the principle of representing 'without favour and without prejudice' the former option is the only option, not least because it helps to contribute to the clinic being a 'safe space' for all who access it.
The vexed question of whether or not a representative should be paid is likely to remain for ever unresolved - there are 'pros and cons' on each side:
Paid/employed
Pros: is (or should be) integral part of the clinic structure - immediate access to clinic decision-making, in some cases actually part of the clinic-decision-making; can use their position to work with clinic colleagues on specific topic and see it done, rather than 'merely' insist on it being done; same confidentiality agreement as doctors, nurses etc; use of employer's resources...
Cons: can be removed by clinic management (professional incompetence, laxity, breach of contract etc) but probably not by the patients; potential for 'paid lackey' - places real demands on integrity;
Unpaid/voluntary
Pros: more democratically accountable to the cohort; can be removed and replaced by a simple vote (in theory, but not always in practice).
Cons: relies on a person or people with time to spare e.g. through retirement from the workplace - likelihood of this is diminishing as more PWHIV remain in regular work and/or regular study, and as HIV progresses as 'chronic manageable' rather than 'untreatable terminal'. Usually relies on advocate's personal resources (computer, broadband, printer/ink/paper...) in addition to time.
democratically elected' by:
Brighton
Obstacles to Patient Involvement
PROJECT DESCRIPTION:
The Lawson Unit's management team (lead consultant, senior nurse GUM/HIV and clinical services manager) called an open meeting for HIV patients attending the clinic. They proposed a new and voluntary part-time post of Patients' Representative. A steering group was formed of patients meeting regularly with the clinical services manager, as a result of which a job description was drawn up. The post was advertised; two managers and one PWHIV interviewed applicants and an appointment was made in December 2000. Work on developing representation began in January 2001.
The post was envisaged as an extension of the shared doctor-patient model by recognising two areas of expertise: that of the doctors within their field (HIV medicine) and that of the patients within theirs (living with HIV, how they feel within their own bodies) and seeing them as complimentary to each other, whether or not they are in agreement.
TASK DESCRIPTION:
To inform and influence (my italics) the management team of the Lawson Unit by proactively eliciting and communicating the views of the wide range of service users.
ELICITING PATIENTS' VIEWS:
The most obvious method of eliciting views is the meeting or forum. As a rule of thumb, service users' forums tend to be attended by approximately 1% of the constituency overall or fewer; one HIV treatment centre in the UK has reported such meetings attended by as few as 2 individuals out of c. 2000 patients.
Currently the process of eliciting views takes the form of weekly sessions at the Lawson Unit at which the representative is available to patients. A consulting room is allocated for this sole purpose to ensure confidentiality between patient and representative, and to confirm patients' representation as a valid exercise within the clinic. This confidentiality is strengthened by the representative being bound by the same confidentiality policy as the doctors. Sessions are held 'off premises' at Brighton Body Positive. To date, most contacts have been via this route.
Patients also make contact by letter, and indirect contact through service user representatives and/or paid staff working in the voluntary sector organisations.
A patients' experience survey is currently under development. Quantified results from this will provide an evidence-base of views across the whole range of patients, including their views of patients' representation.
It had been hoped to develop e-mail as a means of eliciting views, but (at the time of writing) this has had to be held back; the confidentiality policy of Brighton and Sussex Universities Hospital Trust states that the names of individual patients must, on no account, be quoted in e-mails.
INFORMING & INFLUENCING MANAGEMENT:
This is achieved through two main avenues:
MEASURING EFFECTIVENESS:
The effectiveness of representation is measured by the number of comments brought forward via the representative, and by the number of the representative's inputs to Heads of Department meetings. More meaningfully it is measured by the nature of these inputs and by actions taken forward from them, and by contributions to wider discourse within the clinic. To date, inputs from the patients' representative have informed and contributed to managerial decisions on a range of issues including:
PUBLICITY:
After the post was established as a working reality, it was publicised widely in the local press, the local gay press, local radio and the national HIV press. Posters are displayed prominently in the Lawson waiting room and in the voluntary sector organisations. Leaflets are displayed and available at Lawson reception, throughout the voluntary sector, given to attendees of the newly diagnosed groups as well to patients in the acute ward.
KEY PRINCIPLES:
The Representative must play a diplomatic role to encourage the establishment of mutual respect and mutual trust; must be motivated; must be informed or ready to become so; must be firm, fair and focussed.
HIV clinics - in particular the lead consultant(s) - have to be in active, constructive empathy with patients' representation. They should be ready to admit the representative into management meetings and to engage in dialogue.
Sufficient clinic resources should be made available to enable representation to work. Space must be allocated, access to the lead consultant be established, administrative support made meaningfully available.
The patients' representative and the clinic's management should be committed to a 'policy of permanent development' in order that patients' representation and its contribution to the provision of HIV clinical services remains active and forward looking.
LESSONS LEARNED:
With the establishment of mutual trust and respect as a prerequisite, an accessible, practical and formally recognised representation structure can enable patients and doctors to co-operate as partners. The result at the Lawson Unit, Brighton has been the establishment of meaningful patients' representation that can show by established example that patients can participate in the management of their clinic of attendance and that it is not threatening to the medical authority of their doctors.
RECOMMENDATION:
That patients' representation be established as a bridge between the broad body of patients and their clinic of attendance, and to bring their voice into the management of that clinic.
While the model shown below is specific to treatments issues, it also serves as:
It was from the middle column - Shared Model - that the Brighton patients' involvement exercise developed. This was useful in itself, but also in terms of negotiating its legitimacy with clinicians. As the patients' rep, I was able to demonstrate professionalism through reference to the medical literature and hence gain credibility for Patients' Involvement from doctors, consultant and managers.
This was always a 'work in progress' and developed as outlined in the two models shown here. The first is the Elicitation Model; this is infinitely adaptable in that modes of elicitation can be bolted on or taken off as they become useful or otherwise. The point here is to open as many channels of communication as are practicable. No single one will be 100% satisfactory, but several working alongside each other will bring a range of information across the broad range of patients - the table immediately underneath illustrates this.
The second is the Heads of Department Model, which shows where the Patients' representative came to be placed in the clinic management and decision-making structure.
How would you prefer to give your views to the Patients' Rep?
Data in this table are taken from the Lawson Unit Patients Survey
Brighton Lawson Unit - Heads of Department Model
Brighton Outcomes
Ref:
1. Charles, Whelan & Gafni: What do we mean by partnership in making decisions about treatment? BMJ vol 319, Sept 1999
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