Barriers to NSP Access: Safeguarding and Scripting Issues

This short series of blogs came about after a series of training courses where the issue of Secondary Distribution was discussed. This in turn led to discussion about why people were unable or unwilling to attend Needle and Syringe Programmes (NSP) in person, and strategies for addressing this.

In previous articles, we've looked at what Secondary Distribution is, why it may happen, its strengths and limitations and strategies to increase first person attendance.

This final piece looks at the issues of safeguarding and scripting/use on top and how they may deter attendance at the NSP.

Use on top:
To what extent do people on OST who use on top still use NSP effectively? Do we know? I suspect we don't have a robust evidence base for this but annecdotally, both workers and people on OST see the tension between using on top and compliance as a driver to disengage.

The situation has probably got more fraught as more and more agencies work within hub-and-spoke models. The location of multi-disciplinary teams under one roof undoubtely has efficiencies in terms of cost and may well help facillitate access to a range of other services.

It does also, however, mean the walls between NSP and other parts of the service are significantly lowered and in some places removed completely. A person on a script can quite realistically present to get injecting equipment and find themselves speaking to someone directly involved in their prescribing.

This situation has been exacerbated by the increasing political and commissioning pressure to be less tolerant of long term prescribing, the pressure to reduce, not increase peoples doses, and the increasing political unacceptability of people who are on OST also using illicit substances.

The combination of hub models and the pressure on services to get people "off" OST and not have people using illicit substances in turn creates a serious tension between the agency and people attending for NSPs and it's all too easy to see why people disengage.

There are theoretical, practical and idealistic responses to this situation. While in the current climate a "perfect" response may not be possible, improvements can probably be made to most services in this area.

Solutions:
1: Clear policy: the first requirement is that the organisation as a whole develops a clear position on use on top and that this is first communicated internally and communicated clearly to attendees both of prescribing and harm reduction services. Ideally, this position will be one that can work with use on top and injecting. But whatever the position arrived at, it needs to be communicated clearly and in a way that is intelligble.

2:Internal information walls:  We could revert to a model where NSP is separated out from other aspects of service. This ring-fencing of information within the NSP can reassure injectors that confidentiality is located within the NSP rather than the wider organisation.

However it is not always going to be a practical model and there are some significant drawbacks:

• in practice there is not sufficient demand for NSP in many agencies to space and staff for a dedicated service; workers will invariably be expected to undertake other duties. And there is a very real risk that workers and volunteers who don't see people at other stages of their treatment journeys become less aspirational for the people they do see.

• even when partial ethical walls are built around NSP, these are largely make believe. Workers may not formally share information but it will still leak between individuals and between teams. Workers may end up playing an unhelpful game where they have to pretend not to know things that they have learned informally. This is neither ethical nor therapeutic.

• such walls means that essential information such as increased overdose risk, mixing drugs, lapse, social risk factors or under prescribing are not addressed properly.

• If honesty is a key tennet of successful recovery, a model of NSP based on reinforcing deception is unhealthy and needs to change.

Harm Reduction Interventions: Some of the risks of use on top can be reduced by good harm reduction interventions. Indeed this is one of the reasons why we so want people on OST who do use on top to continue to engage with NSPs. Without this contact we lose the chance to deliver these potentially life saving messages.

• overdose advice, such as not using alone, or reducing amount used on top

• route change, including consideration of smoking on top

• Naloxone training and provision

Proportionate responses:In order for people on OST and workers in NSP to be confident that they can share information about use on top, they need to be confident that this information will be used proportionately and appropriately.
A good starting point therefore is good internal policy, training and assessment tools relating to use on top and the appropriateness (or not) of continued prescribing in the face of use on top.

While there is significant political and commissioning pressure to deliver patients in "abstinent recovery" organisations can and should be confident in asserting that the package of care is client centred and therapeutic, even while working constructively with use on top.
With a clear understanding that it is:
(a) better to acknowledge use on top than ignore it and
(b) better to work with it than drive the person from the service
we can then communicate this to people who are on OST and continue to work with them, whether in prescribing or NSP.

Joint working responses:
Assuming that organisations are able to work pragmatically and proportionately with use on top, then it should become more feasible for prescribers and key workers to explore why it's happening and what the best interventions are. Use on top could be happening for a myriad of reasons including:

• consistent under prescribing

• low dose or overly slow titration periods

• poor explanation about the reality of OST and limitations of a therapeutic dose

• strong dependency on ritual aspects of injecting

• use on top as a treat

• use on top as a way of staying in contact with services

• preferring to be maintained or reducing too fast

• using on top at times of stress

• difficulty in managing triggers.

In order to properly address and respond to use on top we need to acknowledge that it is going on and in a non-punitive way explore why, and solutions.

A range of interventions could be offered including:

• switching from methadone to subutex

• increasing dose levels

• exploring issues around habituation on injecting process or self harming

• identifying other rewards as a replacement for injecting

• discontinuing or slowing a reduction programme

• stress management strategies

Even if such an approach doesn't result in a reduction in use on top immediately, the fall-back position of harm reduction still means the person is retained in service and hopefully engaging honestly. We can still work to reduce harm and, importantly the person can still engage with both parts of the service openly, knowing that their situation will be discussed.

Safeguarding:

The other issue that has come up repeatedly as deterring engagement with NSP is the way questions about safeguarding are approached.

The ACMD report "Hidden Harm" highlighted the need to look in to parental status of what it termed "problem drug users," saying: "in order tocontinue to monitor this important consequence of problem drug use, we consider it essential to re-establish a reliable method of recording if a problem drug user has children and where they are living."

This put the onus on drugs agencies to, as a matter of course, ask about and record if a person attending a service has children, and look out for risks to them. The pressure to look in to this has been significantly increased as the issue of Safeguarding has risen up the agenda. The Statutory Guidance "Working together to Safeguard Children" stresses that "the child’s needs are paramount" and imposes an obligation on organisations saying "local agencies should have in place effective ways to identify emerging problemsand potential unmet needs for individual children and families. This requires all professionals, including those in universal services and thoseproviding services to adults with children, to understand their role in identifying emerging problems and to share information with other professionals to support early identification and assessment."

There's a huge tension between these statutory requirements and the need to offer an accessible service to people who inject drugs. Does the idea of the child's needs being paramount mean that exploring this should be prioritised over getting the person who injecting to engage with services in the first place.

It seems counterproductive to pursue such a measure if (a) it carries a very real risk that people will disengage from the service and in turn dissuade others from engaging and (b) where people are engaging, asking important questions about family structure and function is less likely to be elicit honest answers if it takes place too early before trust has been established.

So, again balance needs to be achieved to engage and retain people in NSP whilst also creating the opportunity and climate to explore safeguarding issues in an effective and productive way.

1: Joint training: Or for that matter any training. There's still a significant number of people involved in Safeguarding, especially within Social Services, who are inadequately trained around drugs. Most will, hopefully, have had basic drugs awareness training. However, unless there's been a greater exploration of harm redution, safer injecting, attitude awareness and treatment. Without such training, the risk is too many workers will have a knee-jerk reaction to encountering injecting drug use where children are a factor. Without the knowledge, skills and comprehension to assess the situation in a more nuanced way, it will hard for both NSP workers and people who inject to feel confident disclosing and sharing information.

The best way to achieve the desired outcome will be joint training where drugs workers, social workers and other key players can share training around safeguarding and drugs. This provides an opportunity for workers to develop all-important personal relationships and trust, clarify issues, problems and boundaries and look at shared solutions.

2: Policy development and communication: As with the use on top issue discussed earlier, agencies should develop a clear position statement which is understood by all staff and can be shared with NSP attendees in an clear and intelligble way. It cannot and should not offer unrestricted confidentiallity, but should make it more transparent what will and will not need to be shared.

3: Trust worker judgement: Ideally, there should be a recognition that workers can use their judgement, and in the first instance achieving attendance and building trust should be a priority. The worker should be able to assess when sufficient trust and confidence has been established to explore difficult issues such as child welfare. The message to workers should be "you need to assess the situation in relation to children of people who inject, but you should decide when exploring this issue is productive, and should not happen prematurely where there is a significant that to do so would cause the person to disengage from the service. Such disengagement represents a greater risk to both adult and child."

4: Foster idea of benefit not threat: How we frame questions can have a big impact on the answers we get. So if for example we simply ask "do you have any children at home" there's a risk that the question will be seen in a threatening light. Especially if it's been prefixed by a warning that there's a limit to confidentiality and child safety is a "red-line." But let's try and find ways of selling the questions better. So for example if the agency had a contingency fund to buy and fit lockable medicines cabinet for people who inject and have children. The worker could then prefix the questions about children by discussions such as:
"we have sharps boxes with small apertures and non-return mechanisms which are safer if you have children in the house, so let me know if this sort of box would be better for you..."
"there's always a risk that, even if you try and store your equipment safely out of reach, children find it so we encourage everyone to use a lockable medicine cabinet for storing drugs and equipment. if you don't have one at home and need one we can help with this..."
"it can get busy in the needle exchange and it's not the best environment for children, so if you do have children and need to attend with them, it's better if you make an appointment so you can be seen somewhere quiet and as quickly as possible...."

Conclusions and next steps:

NSP sits amidst a nexus of conflicting tensions. Compliance with treatment, returns, child safety, community atttitudes, funding and commissioning all have an impact on how services are delivered and how well they can work. Recent conversations with workers in NSPs have highlighted the extent to which these tensions are having a real deterrent effect on attendance and engagement. Effective engagement with an NSP is valuable, not just because of the life-saving harm reduction benefits that it can offer. The wider engagement that it can lead to is important for the treatment interventions that come with it, and the chance to address wider safety concerns such as the wellbeing of children. It is therefore self-defeating if the requirements to address treatment and child-safety actually have the effect of causing people to disengage from services.

There are solutions to these issues, and it is imperative that these discussions start to take place in a meaningful way within NSPs and wider agencies now.

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.

Carrots and Sticks and NSPs

[part 2 of a series about Needle and Syringe Provision, exploring practice and ethical issues]

The preceding blog article highlighted some of the legal issues regarding secondary distribution. This one considers reasons why secondary distribution happens, and some of the pros and cons of secondary distribution.

A key function of NSPs is to get sterile equipment in to the hands of injectors when it is needed and hopefully remove used equipment from circulation. Secondary distribution assists this process and as such represents an essential facet of distribution. Although essential, it isn't ideal. For a collection of reasons, some people will be unable or unwilling to attend NSP themselves and so rely on others to attend.

It could simply be that geography, travel costs, work or other commitments make it impractical to attend an NSP in person.

Where the NSP is primarily just distributing equipment and offering little more in terms of advice or other input, getting someone else to collect for you makes a lot of sense. In such settings the perception will be that there's little benefit in attending in person. In order to attend there needs to be some sense of added value, or why bother?

For other people, barriers to attending NSP may be more complex:

• injectors may have been ASBOd out of area or have other restrictions that make it difficult to attend in person
• there may be fears around child protection issues, deterring people from attending
• in hub-style provision, scripted injectors may be wary of attending as it could draw attention to use on top
• perception may be that the service is not "for me" - not orientated to steroid users, BME or LGBT injectors, young people, those not in recovery.
• pressure to bring back returns 
• onerous assessment tools.

So secondary distribution represents an essential access point to sterile equipment for an unknown number of people. As such the NICE guidance on NSPs rightly endorses it. However, it is not without disadvantages. Some of these are significant.


Where injectors take advantage of secondary distribution, this can create another barrier to service access. The distributor can become a gate-keeper. The recipient receives injecting equipment from them. They may also receive advice, information, guidance and other input from the distributor.

As the recipient can access sterile equipment from the distributor (along with additional advice) there is reduced reason for the recipient to attend a NSP. What they receive is therefore limited to what the distributor can offer. A range of interventions such as professional wound care, testing for BBVs, vaccines and access to treatment are therefore less accessible.

In truth we can't be confident that the distributor is distributing the "correct" equipment or accurate information. They may have only collected one or two types of equipment and so can't offer a range of paraphernalia.

And we don't know how it's being distributed. Is it being sold? Distributed pre-filled? Single item distributed with each bag of gear sold? There may be a tacit assumption that the secondary distribution is a benign, philanthropic activity but this may not be the case. We can't even be confident that the equipment distributed is sterile, as the move towards bulk-bagged Insulin syringes increases the risk that used equipment can be passed off as sterile.

The role of distributor as gate-keeper could be especially significant where the recipient is vulnerable, where abuse or exploitation could be an issue or where the recipient is a young person. So far from being an atruistic act, the distributor could be maintaining control and power through the act of distribution.From a Maslowe-esque point of view, the role of distributor can confer status, recognition, respect and status.

Returns is another key issue. Agencies may give out large quantities of injecting equipment for secondary distribution but there isn't always consideration of how it is to be returned. Now in some settings, especially amongst some steroid users, secondary distribution is associated with secondary returns. Here, one person collects and returns used equipment for a number of peers, bringing back large amounts of equipment. Whilst this is to be welcomed, it's probably the exception not the rule so secondary distribution risks contributing to the problem of low returns.

As it will be preferable for people who currently get injecting equipment from peers to attend NSP in person,  in coming articles we'll look in more detail at how to address some of these barriers, especially pressure on returns, assessment, scripting and safeguarding concerns.

In the meantime, looking at the issue from a broad perspective, organisations need to:

• acknowledge and accept that secondary distribution is a component of comprehensive NSP
• make proactive efforts to encourage recipients of secondary distribution attend in person:
• stressing to distributors the benefits of attending in person
• exploring reasons why they can't/won't attend in person
• weighing up "greater harm" principle - does withholding the secondary distribution increase or reduce risk?
• working with distributors to ensure they give out the correct equipment and 'right' advice - especially those who are distributing significant amounts of equipment to a number of peers

• address barriers to attending in person
• outreach where geography is an issue
• addressing fears around confidentiality and scripting
• streamlining assessment processes

• maximise and stress benefits of attending service in person - informed, compassionate, caring staff offering a confidential, non-judgemental service including but not limited to needle distribution.

• identify and challenge situations where secondary distribution increases rather than reducing risk, such as the sale of pre-filled syringes, incorrect equipment distribution, lack of disposal options and inadequate amounts supplied.