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.

Anabolic Steroid Users, Needle Exchange and the Peril of Publicity

There have been a fair few media stories over the past few years about the increase in Needle Exchange usage by people using Performance Enhancing Drugs – especially anabolic androgenic steroids.

A classic of the genre is this one from the BBC: http://www.bbc.co.uk/news/uk-england-bristol-19650743. In truth through, the stories are highly interchangeable – usually some statistics about increased usage from a Needle Exchange, comments from drugs workers and experts, and some comment from a user about their use.

Inaccuracies and sensationalist reporting aside, the ongoing news stories originating from Needle Exchanges about steroid use is something or a double-edged sword.

On the one hand, needle exchanges and drug projects need to ensure that they retain the funds and resources that allow them to continue. As the welcome downward trend in heroin injecting continues, it is essential that funders and commissioners are aware that other populations need access to needle exchange. And so identifying and publicising the level of service usage – and the level of need is essential.

Indeed, some services, researchers, harm reduction advocates and academics are clearly of the mind that highlighting the level of use is one of the key tools for securing the funds required to develop and expand services to steroid users. Such expansion could include better specialist services – highly trained staff, opportunities to have blood analysis undertaken and better health care. To secure such funding, demonstrating a level of need is essential.

In order to do this, agencies need to record drug of choice. It also helps to identify and respond to trends, and also so that they can ensure staff are trained and resources. The agency needs the profile of their clients, funders demand it and resources hinge on it.

People who use Anabolic Androgenic Steroids often view the situation differently. They are acutely conscious that their drugs of choice occupy an unusual position within the Misuse of Drugs Act 1971. The drugs are currently legal to possess, even if not prescribed, putting them in a privileged position compared to most other Controlled Drugs. There have been changes to this in the past year – introducing a requirement to be in personal possession at the point of importation, but the removal or a requirement for the drugs to be “in medical form” to be lawful. These changes make it theoretically harder to purchase and import high quality “licensed” products on-line, whilst making the possession of counterfeit or underground products now wholly lawful.

As such some people using steroids think that they have a vested interest in keeping steroids “off the radar” and trying to reduce the extent to which it comes to wider public attention and certainly off the agenda of legislators. Even the argument that better evidence of need could result in better service provision cuts little ice here. Whilst we don’t know the exact figure, a fair proportion of people injecting steroids elect to purchase their elected equipment on-line rather than using needle exchanges. For some this is merely practical: not all needle exchanges give out the range or quantity of equipment that some users want. Others just don’t want to be seen using needle exchanges. A few argue that if they can afford it they should buy it rather than using a free service they view as being in greater need. But of the needle-exchange refuseniks, a fair few are making a very deliberate decision not to use needle exchanges to avoid contributing to statistics which could reveal the nature and extent of steroid use.

One of the recurring responses, from moderators on a leading UK body-building website makes the case thus:

Steroid users should never, EVER use an exchange.
 
Steroids are class C atm. They govt are always looking for the next "vote winner". Let's re-classify steroids to 'save the children' will be the call. How will they manipulate this change? From spurious data and figures that would be used to drive home a message to joe public that "the UK has a massive steroid problem". Look how many users there are compared to year xxxx etc etc. The more people using exchanges, the more convincing their argument, even when you and I both know relatively speaking it is no-where near problematic proportions.
 
As such, needle exchange discussion is not encouraged on [this bulletin board.]

Judging by the various threads and discussions this view is on the increase with more and more people electing to use on-line suppliers rather than needle exchanges.

In an (admittedly) small on-line poll less than one in four people using injectables said that they used pharmacy exchange all the time. A staggering 63% voted “I never have, and never will use an exchange.”

Given the track record of Government on drug prohibition, I can’t help feeling that some of the concerns of those who caution against needle exchange are well founded. One would hope that a rational Government would recognise that criminalising and driving a group underground would be counter productive. So far, in no small part due to careful presentation of evidence by leading lights in the UK, the ACMD has shied away from rescheduling steroids and the Government, despite the obvious temptation of the Olympics, has not seen an urgent need to do so. But against an ongoing drip-drip-drip of negative steroid media stories, I wonder how long until the status of steroids is renewed again.

Why, some will ask, does it matter if steroid injectors don’t use needle exchange? If this population can afford and are willing to purchase their own equipment, why should agencies be at all concerned?

Some workers (and indeed some commissioners) have endorsed this approach, saying that needle exchange isn’t really “for” steroid users and as such if they can afford their own equipment they should really buy it not use Needle Exchange.

Personally I have no truck with this analysis. I don’t remember a similar argument for means testing needle exchange being made for other drugs. Needle exchange is intended to be available to all who inject non-medical drugs, because of the public health need of such a service, irrespective of ability pay.

We want people to use services because that way we can ensure people get advice about injecting technique, access to advice, woundcare, BBV testing and vaccinations. Certainly many steroid injectors have a good understanding of what they are taking and how to use it. Others don’t and they need access to this information.

Not all steroid users are sourcing equipment on line; almost a quarter, for whatever reasons, needle exchange represents an essential source of equipment.

So here’s the catch 22.

In order to demonstrate need and to attract funding to provide great services agencies need steroid injectors to attend. But those same injectors are concerned about attending and being counted because, rather than seeing this resulting in better services, they fear that the aggregated statistics will be used to justify criminalising steroid use.

Agencies don’t help their case by stressing the confidential nature of their service and then ending up all over the front pages of the local press, highlighting how much steroid use has increased. If there were ever a way of reinforcing the fear that use of needle exchange puts steroids more firmly in the public eye and increases risk of prohibition, this is surely it.

So what’s the solution? In the short term, needle exchanges and other commentators need to think carefully about the pros and cons of highlighting increases in steroid use to the media. Not, I should stress, because this directly impacts on UK policy, but because the same steroid users who read the papers today are the ones who, tomorrow may be disinclined to use needle exchange.

More fundamentally, it highlights the importance of drugs policy being independent of political ideology. If users feel that they can’t trust how statistical data is being used, and they can’t believe in an evidence-based drugs policy it’s hardly surprising that they will seek to keep their use “off-radar.” Rather than viewing wider recognition of use as a way of garnering resources and better services, it is viewed with great fear.

People using anabolic androgenic steroids and discussing this issue on forums are deeply suspicious of the use of statistics and research by needle exchanges and how it impacts on the media and wider policy. Agencies need to recognise and respond to this suspicion and work to undo the damage.

Getting needled #1

How much needle exchange equipment is wasted? I don’t mean how much ends up not getting returned. That’s an issue I want to return to at a later date. But how much of it gets discarded unused?

This has been an issue since the early days of pre-packaged equipment. I remember when, long ago in the West End of London we moved from pick-and mix equipment to prepacked bags of 10 needles/syringes one of the big discards wasn’t used equipment but large amounts of unused equipment. People wanted one or two needles, we insisted on giving them ten needles and so, predictably, most of the equipment was chucked away, unused.

Anecdotal information suggests that this situation has not get better and, in some areas, has got much worse. Discussions and training sessions with housing organisations and community wardens has, in some areas, raised the issue of larger quantities of unused equipment being discarded. This has included virtually complete needle exchange packs, suggesting users only wanted one or two syringes and on other occasions discarded spoons.

As the range of needle exchange equipment has increased, with the advent of (for example, sterile spoons) and more distribution takes place with prepackaged equipment from pharmacies so, the risk is more equipment gets discarded unused.

The rationale for such bundling is to reduce cost – bulk purchasing reduces costs and prepackaging makes distribution faster. In theory giving out more equipment in bigger bundles should be a winning situation: less episodes of exchange reduces the burden on pharmacies, should mean each episode can be more intensive, and by giving more equipment out should reduce episodes of sharing or reuse. But has this happened in practice?

In one area for example the package size is 20 syringes per bundle with associated paraphernalia. It makes for a fairly large and obvious package – not discrete. And anecdotal feedback suggests that it is not uncommon for significant amounts of these packs to be discarded unused.

We don’t know how much equipment is discarded unused. It might be things that the person simply never wanted – such a person who didn’t want to use the provided sterile spoons. It might excess be excess syringes when the person, for whatever reasons, didn’t want all twenty, just one or two for use today. Or it could be the “other” needles – the twenty orange 25G needles that the person didn’t need because they were using the 23G blue needles in the same pack. They had to be provided together as a compromise necessitated by prepackaging equipment, in the knowledge that one lot of needles will be surplus and discarded unused.

Without knowing how much equipment is being discarded unused, we can’t start to put a price on it. This is bad enough. Worse, without a clear picture of how much equipment is distributed but not used, we risk working under the false impression that we are getting more equipment out to injectors and that it is being used. So we may end up looking at the headline figures – how much equipment is going out – where this figure has gone up, assume that our injectors are getting more clean equipment.

In the statistics for one area that I was looking at, the quantity of injecting equipment distributed almost doubled in the period from last year to this. We know in the same period that the number of injectors hadn’t gone up. In fact it had gone down. So the doubling in quantity of injecting equipment distributed should mean that the reuse or sharing of equipment would halve, which would be a great outcome. The fear though should be that a significant proportion of this additional equipment distributed is not being used, but discarded.

Perhaps the reason for the doubling of the distribution is in part because of large pre-packaged bags.

Across the same time frame in South Wales, pack sizes reduced instead of increasing (from ten needles per pack to three.) And while the number of packs distributed increased by around 30% the net result was an overall reduction of the number of needles distributed. Did this mean that the level of sharing and reduce increased? Or did it result in a reduction in wasted equipment?

We need to know the answers for two key reasons:

• We can’t start to accurately assess the extent to which distribution meets need, if we can’t say with any confidence what proportion of distributed equipment is actually being used;
• We could be wasting significant resources if we are distributing equipment which is being discarded unused.

There are several things we can do to try and better understand and address this issue.

The first requires some detailed research. There is a huge information gap that needs to be overcome. In many needle exchange areas the return rate is low, coming in below 50%. But at the same time the level of public discards is (mercifully) very low. This makes it very difficult to assess whether non-returned equipment is being discarded used or unused. We don’t know where it is going. Domestic waste? Building up at home? Public bins? Not known. And this isn’t the key question to be honest. It just means that it makes it harder to assess how much equipment is being discarded unused.

The only reliable way of eliciting this information will be research with needle exchange customers to assess what proportion of collected equipment is used, and what proportion is discarded, unused. Such research should ideally be cross-correlated against model of needle exchange, and type of equipment. Does large pre-packaging, for example increase the amount of unused equipment discarded. Is there less discarding with pick and mix?

A less reliable, but useful interim measure will be more accurate monitoring of drug litter and discards to ensure that all such monitoring differentiates between used and unused equipment. While some areas do this it is not universal, and to do so would help monitor trends over time and the impact that changes in provision have on discards.

If research shows up high levels of equipment is discarded unused, it will highlight the need for changes in practice and policy to reduce this senseless waste. But in the meantime some measures can be taken to maximize the chances that equipment taken from exchanges is used, and not discarded unused:

•  Maximizing pick and mix distribution to ensure people can take as little equipment (or as much) as they want
•  Avoiding prepackaged equipment exclusively in large quantities
• Ensuring that local policing policy and practice does not discourage people carrying quantities of clean equipment
• Ensuring that policies in hostels and supported housing is supportive of injectors storing clean injecting equipment on site
•  Provision of suitable bags to carry injecting equipment discretely (such as backpacks) rather than pharmacy carrier bags
•  Provision for homeless injectors and those for whom carrying large quantities is impractical – including distribution of small quantities of equipment with suitable means of disposal.
•  Raising awareness amongst injectors of the cost of equipment distribution with a view to reducing avoidable waste.