06 August 2015

NSP: navigating the barriers of Assessment and Confidentiality

This series of articles about NSP started with a consideration of Secondary Distribution and looked at reasons for first-person non-attendance, and the pros and cons of secondary distribution.

As the earlier articles noted, whilst NSPs should acknowledge and work with secondary distribution, we also need to address the barriers to first person attendance and how make access as easy as possible.

Over a number of workshops and discussion, four entangled issues have come to the fore as key barriers,which can and must be addressed to facillitate first-person attendance.

1: Assessment: bloated assessments, imposed too early, seeking repetitve and non-relevant information
2: Confidentiality: confusion over anonymous versus confidential services, and lack of clarity about how information is shared deters engagement. this issues links to:
3: Safeguarding: the drive to assess the well-being and needs of children of injectors may deter attendance by injectors
4: Conflict with scripting: lack of clarity and confusion about use on top deters scripted injectors from attending.

This article will look at the first two issues. We will return to the second two in the last in the series.

Assessment and Record Keeping
Assessment procedures have a habit of developing a life of their own. They start small, and over time bloat and morph in to multi-page assessment documents. Various workers have reported that they are expected to complete mini-epics as a prerequisite to distributing injecting equipment.This is very problematic, because:
  • early on in the relationship, insufficient trust has been built up to make such an assessment a useful process
  • NSPs aren't always clear about information sharing (e.g. in terms of use on top) and this lack of clarity about confidentiality when completing assessment documents is not helpful,
  • too often, questions are not relevant to NSP, or are duplicated from other assessment,
  • information collated isn't always stored or used in any meaningful way - so doesn't get used to deliver a better service, but is merely collected for its own sake.
The need for assessment:
To cover basic dilligence, some assessment is essential. Even workers with significant antipathy to assessing things will acknowledge that (for example) it is important that they assess the age and level of intoxication of someone attending NSP. So if we can accept that some assessment is a prerequisite for safe exchange, we therefore need to establish what we need to asssess to deliver competent NSP.

Having acknowledged this, we then need to record this information in a meaningful, and hopefully useful way.

Minimum assessment:
In order to meet a basic Duty of Care to injectors, workers need to be confident that the person is getting the correct equipment for their needs, and that they know how to use it safely.
We could assume that the person is correct in terms of equipment choice and how to use it. But such an assumption could be erroneous. There are certainly young steroid users who haven't a clue what they are using. Likewise, people injecting NPS could also be unclear about process or technique.But confusion and poor practice isn't the exclusive preserve of these groups. So the safest way forward is to assess rather than assume, especially where people are new attendees at NSP.

We need to know:
  • What is being injected: this will determine should the drug be injected in to a muscle, under the skin or in to a vein. It will also determine should an acid be added, will it need to be heated and will it need filtering.  This will also highlight OD risks.
  • Where - which  sites are being used: this will determine which equipment the person should be using, and highlight key harm reduction information
  • Where - the environment: If the agency is to give practical advice and prioritise resources where needed, it will be important to know who is homeless or injecting in street settings, and who is housed. Swabs, hand wipes and sterile water should be targetted at homeless injectors.
  • When: the frequency of injecting will determine how much equipment the person needs for a sterile needle for each injection
  • Who: is the equipment for the person presenting or someone else? And is the person injecting themselves or someone else? This flags that the other person ideally attends themselves, and the need for specific harm reduction information
  • How: this isn't an exploration of the entire process - just to ensure that the person is familiar with the equipment that you distribute. How to put handles on spoons, what sort of acid you give out, do you supply water and amp crackers. As different exchanges supply different equipment, it is important to explain what you give out.
In terms of staff training, anyone who is delivering NSP should be able to ask these questions, and be able to understand and react appropriately to the answers.

These questions, along with statistical and monitoring information (gender/age/geographical identifier and ideally ethnicity, sexuality) form the basis of an initial assessment.

In order to minimise obstacles to engagement, the aim should be to get such an assessment undertaken at the earliest opportunity BUT the key priority is still to ensure that the person receives sterile injecting equipment. It may be on initial attendances, the person doesn't have time or willingness to engage even for a short assessment. The injector should be supported and encouraged to leave enough time on the next visit to undertake a basic assessment.

Disclaimers: If, after a number of visits, it is apparent that the person doesn't wish to engage with an assessment, a decision should be reached about the appropriateness of continuing NSP to this person. If provision does continue,  the agency should consider asking the person to sign a disclaimer, which acknowledges that the injector does not wish to undertake any assessment process and as such the NSP will not be held liable for any harm arising from distribution of equipment.

Anonymous versus Confidential: Both people attending services and those working within them seem to get the concepts of anonymity tangled up with the issue of confidentiality.

An anonymous service means that the person can engage without any information that links to their identity being used or recorded. So while the person may offer a name, initial, postcode or date of birth to create a unique identifier (for statistical purposes), this doesn't tie in to the person's real identity and as such can't be used to identify them or link to other records.

A confidential service is one where a person's identity may be known, but their identity and how it and information about them is used and shared is restricted.

People attending an NSP are entitled to expect a confidential service. But the term "confidential" is widely used without clarification. No service offers a completely confidential service. There will always be times when NSPs will need to share information - with or without the client's knowledge and consent. Agencies should also be clear where confidentiality lies - at  a team, project or other level.

People who are concerned about their personal privacy or their identity as an injector being exposed may be keen on attending anonymously. However, a wholly anonymous service can have a big drawback -and this relates to advice and record keeping.

Record keeping matters. Again it is something that some workers resist strenuously. But it shouldn't just be a make-work exercise. It can have significant benefits for all parties, and thought should be given as to how to make it work well.

Good record keeping is essential as soon as an organisation is doing more than equipment out/in and "leaflet level" information i.e. verbally presenting stock information such as is found on standard literature/resources.

Where the NSP is delivering more tailored interventions - such as specific advice, referral or signposting to other services, person or situation specific guidance then record keeping is essential.

  • in terms of accountability and professional standards, it ensures that the NSP can demonstrate that it fulfilled its duty of care and, should practice be called in to question, can draw on written records to demonstrate actions taken.
  • in terms of continuity it ensures that, regardless of who the injector next sees at the NSP, there's a record of issues to be followed up. This is useful, not just to ensure that advice or referrals are being actioned. It also demonstrates an ongoing interest in the person's wellbeing.
  • record keeping can help ensure workers focus on current issues that need addressing rather than repeating other messages that may or may not be relevant.
Herein lies the tension between anonymous services and what we could call NSP+ - a programme that delivers more than equipment - offering detailed advice, information and care planning to injectors. A NSP+ service needs to have proper records, and as such can't operate on a truly anonymous basis. Records need to be linkable back to a known, identifiable individual.

One way through the conundrum is to structure the NSP in terms of levels engagement, engagement and record  keeping.

  • At a basic level (NSP) a person can access equipment, and get leaflet-level information. 
  • a minimum assessment as described above should be undertaken
  • such service can operate on anonymous-type identifiers and with minimal record keeping.
The next level of service (NSP+) includes a raft of additional services including tailored harm reduction advice, BBV testing, vaccines and care-planning in relation to injecting health. When engaging with NSP+ the following would be required:
  • additional personal identifiers to allow for record keeping
  • ongoing case notes
  • a more comprehensive assessment of injecting related needs.
In order to make such a proposition acceptable and appealing to people using the service, consider it more as an exercise in offering an "enhanced" service. As an analogy, consider on-line shopping. I can just log on and shop as a "guest" customer. But by registering and signing up I should get an enhanced service, such as special offers, priority service, better customer support and other benefits. What I don't want is just lots of spam.

So in the same way NSP is a basic service, and there's a better, enhanced service that you are encouraged to sign up for - NSP+. It has to have benefits, not merely mean the agency gets a load of information and the client gets the same service.

The limited nature of confidentiality
Organisations should be very clear - both to themselves and to those who use their services - that they can at best offer a limited level of confidentiality.

  • The organisation should determine where confidentiality rests - at a team (e.g. within NSP) or Project, or even at a wider level;
  • the limits of confidentiality should be mapped and clearly explained to service users as early as practical, in a way that is meaningful and understood;
  • wherever possible, workers should try to get the client's informed consent so that information sharing can take place, with the client's knowledge, and where it serves the client's best interest.
Where information sharing has to take place, there are a number of hierarchies of sharing which could be selected. The risks and priorities in each situation will determine the most appropriate. These could include:
  • information sharing with client's knowledge and consent (if not approval)
  • information sharing with client's knowledge but without consent
  • information sharing without client's knowledge or consent.
Where the situation allows for it, it will be preferable that knowledge and consent can be obtained, and the client retains some ownership over the process where possible.

The Hub of the Problem
The issue of confidentiality becomes especially challenging in the move towards hub models where all services including prescribing, key working and harm reduction are all under one roof. Some services have few if any specialist NSP workers. As such a number of workers and volunteers with varying levels of training may end up giving out equipment. There have been numerous accounts of effectively anyone who knows which is the pointy end of a needle "covering" distribution of equipment as required.

Key issues here related to the key issues of confidence, continuity and confidentiality.

Confidence:   Well trained workers and volunteers who understand injecting want to deliver a great service can help even unwilling customers to engage. They can ask the right questions, give helpful advice, and are not afraid to ask questions. Under-confident workers don't want to display their lack of knowledge and risk avoidng questions and discussions. Some under-confident workers will discourage their client from asking questions, and run the risk of viewing their client as unwilling to engage whereas the problem doesn't lie with the client at all.

So whoever is delivering NSP should be properly trained to a high standard otherwise they will be a barrier to good engagement.

Continuity: Even with good record keeping, having an unfamiliar face each time a person goes to the NSP is not helpful. While there may be transfer of relevant information between workers, this doesn't transfer to a transfer of the worker-client relationship. it's not easy to build up a trusting relationship when you rarely see the same worker twice.

Confidentiality: Whilst we can talk about information sharing and informed consent, this goes out the window where the client attends to use the NSP but the worker delivering on that occasion happens to be someone who also plays a role in prescribing, or key working or another area of work. However much we pretend that information is confidential within NSP, when the person using the service sees a person they know in other roles, no amount of reassurance alters the fact that the person's injecting behaviour has been disclosed without them meanting to do so, to a person they wouldn't necessarily have told. All our paper policies are redundant if the person using the service has little control over who they see within the service.

There are a couple of solutions to this problem.

The first is to refocus on a model of NSP where the service is primarily delivered by a cohort of trained workers covering needle exchange duties on a regular, rota basis.

Having dedicated workers, properly trained, and working on a regular basis helps to address the issues of confidence, continuity and confidentiality discussed above. It should also mean that the significance of NSP as a core part of a service is not lost. It isn't a bolt on to a service, to be covered by anyone not doing anything at that moment. And time spent delivering it should be factored in to workload and service delivery, not rushed to get back to the monitored and audited work.

The other solution is to consider how the whole agency works with use on top.And it is to this and the issue of safeguarding that we will return in the next and final instalment.

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