Introduction
Organisational issues
Staffing services
Young people
Women
Black and other visible minorities
Steroid users
Prisoners
Needle exchange for people receiving drug treatment
Key points

There are many factors which affect the effectiveness of individual needle exchange schemes. This section looks at how managers and workers can ensure that new and existing services meet the needs of injecting drug users.

'Task Force' recommendations for needle exchange

An independent review of drug services in England in 1996²⁷, recommended that:

Purchasers should ensure comprehensive local coverage

Minimum service specifications should include basic primary health care

Basic client data should be recorded

Information on costs, including cost per exchange should be recorded

Purchasers and providers should agree targets for volume of clients, frequency of visits, duration of contact and percentage of referrals to treatment.

The task force review recommended that basic health checks should be available in exchange schemes, and that staff should be suitably trained to provide them.

To be effective, exchanges need to be well organised. Under this heading various factors affecting the planning and organisation of needle exchanges are discussed.

Siting schemes

It is extremely important to bear in mind when considering where to site schemes, that appropriate planning permission may be required. Exchanges have been closed down in the past where the required change of use planning permission has not been sought.

Syringe exchanges are seldom welcomed by local residents or businesses. The siting of a scheme will often be a pragmatic trade-off between a site that is highly accessible, but that causes the minimum dissent within the surrounding community.

Local residents' groups can react with hostility to the establishment of exchange schemes. Often these reactions will be based on a lack of understanding. Preparatory work, meeting individuals and explaining the philosophy of harm reduction measures such as syringe exchange, will seldom be wasted ­ although public meetings and the media should be handled with great care.

When local groups do object vociferously, the day-to-day running and long-term survival of projects can be difficult. The support of services by local authorities and health authorities is vital.

Opening hours

Ideally, needle exchanges should be open when people are most likely to use them ­ in the evening and at weekends. However, because of cost, many are open during office hours only. Pharmacy needle exchanges are often open in the evening and at weekends, but cannot provide the same level of support and advice as services which have specialist workers available.

Preferably, services should be open for as long as possible. If only limited evening opening is available, then this should be at the time of likely greatest demand, i.e. Friday and Saturday.

Erratic opening hours and a lack of permanent sites are likely to result in frustration for service users and underutilisation of services.

Levels of advice

Projects should consider who gives what level of advice, and have an agency policy covering all injecting advice.

Establishing basic competencies for advice-giving, following suitable training, is good practice. A hierarchy of advice-giving based on competence might look like this:

Basic level ­ within the scope of all workers following basic training ­ includes advice on:

Risks associated with injecting and injecting equipment, including paraphernalia

Safer sex

Intermediate level:

Basic advice on injecting technique

Primary health care issues, including recognition and referral of common injecting injuries

Specialist level ­ given by experienced workers who are likely to have a nursing or medical qualification:

Complex advice and instruction on technique, e.g. femoral injectors.

Record keeping

Recording systems for needle exchange tend to be based on obtaining the minimum amount of personal data required for statistical purposes. Records usually cover initials, date of birth, postcode and equipment taken at each visit.

There are potential advantages to services and users if more detailed information is taken in particular circumstances. Examples would be:

Ethnic monitoring to ensure that the needs of all injectors are met

Recording specific interventions or information given to individuals, so that workers could check that over a number of visits people coming to the exchange were informed about hepatitis C, the risks of sharing paraphernalia, safer sex, overdose, etc.

Keeping records of injecting injuries.

Needle exchanges in the UK, with some notable exceptions, tend to be underfunded, understaffed and undervalued. Staff often derive little status from needle exchange work, which can be stressful and ethically challenging.

The training, information and support needs of staff are too often overlooked or ignored. The supervision needs of staff also often appear to be poorly addressed.

In order to maximise and maintain staff effectiveness and avoid loss of staff or 'burn out', consideration should be given by managers to:

Training

Supervision

Development of an adequate policy and practice framework to support the work.

Who should provide needle exchange?

There are roles to be played by many different organisations and services in the provision of needle exchange. As already mentioned there are roles for:

Specialist agencies

Pharmacy syringe exchange

Outreach services

A&E departments

GPs/primary health care services.

The roles played by all will be different. However the majority of exchanges will probably always be conducted by specialist agencies and pharmacy syringe exchange.

Minimum standards for pharmacy syringe exchange should include:

Adequate staffing and space

Adequate staff training

Hepatitis B vaccination for relevant staff

Accurate record keeping

Safe storage and disposal of returns

Awareness of boundaries ­ i.e. age, level of advice

Good communication with specialist schemes and other specialist agencies.

Specialist needle exchanges have a crucial role to play in the delivery of a comprehensive service. In order to preserve and extend this role it is important that services:

Offer levels of advice and intervention in excess of those available from pharmacy exchange schemes

Take note of research developments

Provide outcome data as identified by the 'Task Force' review

Recognise, define and build upon good practice

Maximise their efficiency and effectiveness by regularly reviewing and altering practice where necessary

Establish agency policies for difficult situations which may occur

Where necessary extend the range and type of service provision offered.

The limitations of the needle exchange model

As Stimson and Donoghoe have observed, formal needle exchange tends to be rooted in a 'client-worker' relationship ­ a manifestation of an individualistic public health model. Stimson and Donoghoe talk of:

"a certain irony that when professionals talk of 'enabling' or 'empowering' their clients, they are encouraging them to be more sophisticated consumers of services provided by professionals." ¹¹⁵

Training

Regular training for needle exchange workers is vital if they are to be expected to:

Keep up to date with developments

Remain focused on the aims and objectives of the project

Develop their roles

Provide the best available service for injectors.

Key training areas

The priority training areas for needle exchange staff are:

Safer injecting techniques

Prevention of transmission of blood-borne viruses

Advice giving and limit setting

Primary health care issues, including recognition and referral of common injecting injuries

The promotion of safer sex practices.

Primary health care provision

In general, injecting drug users, despite often having greater need, do not utilise primary health care as much as the general population.

Many problem opiate users do not have GPs until or unless they are required to obtain one as a condition of methadone treatment by a specialist treatment service.

There is a good case for arguing that primary health care services such as basic health checks and treatment of injecting injuries should be provided, where possible, within needle exchanges.

This approach gets around the barriers to referral to general medical services, such as difficulties in attending appointments and judgemental attitudes of some staff in these services. One disadvantage of service-based primary health care, is that it takes drug users out of the mainstream of treatment, so that the unhelpful attitudes of some mainstream practitioners may be left unchallenged and poor practice may prevail.

Some of the factors that may influence the interaction between drug users and primary health care providers are:

A belief on the part of many drug users that all their physical health care needs are drug related; for example, an asthmatic who has not been diagnosed may not attend a doctor for treatment because she believes that her breathlessness and wheezing are a direct result of her heroin smoking

A belief on the part of many primary health care providers that all drug users' physical health care needs are drug related or part of an attempt to obtain drugs

Users' bad experiences of primary health care treatment services

Primary health care services' bad experiences of treating users.

Staffing services

The role of the nurse

Nurses offer an important contribution to needle exchange in the level of background knowledge that they can provide, especially in health-related areas. It is important that nurses working in needle exchanges realise their potential in terms of providing a vital service to clients.

Nurses have a formalised code of conduct, which makes them personally accountable for their actions to their professional body, The United Kingdom Central Council for Nurses and Midwives (UKCC). The UKCC code of conduct sets out their responsibilities to represent and protect the interests of patients and clients. This is in addition to those legal constraints which will apply to all workers.

The first four clauses of the UKCC code of professional conduct are fundamental for nurses working in needle exchanges, but can be generalised as good practice for all workers:

"As a registered nurse, midwife or health visitor, you are personally accountable for your practice and in the exercise of your professional accountability, must...

4 acknowledge any limitations in your knowledge and competence and decline any duties or responsibilities unless able to perform them in a safe and skilled manner..."¹¹⁶

The duty of a nurse to follow the code of conduct is higher than the duty to follow instructions given by a manager, where to follow instruction would be a breach of the code.

Outreach and peer intervention

Outreach into communities of injecting drug users is closely associated with specialist needle exchange. There are various different models of outreach provision, including:

Professional outreach

Peer intervention outreach.

Professional outreach

Professional outreach workers (who in the main are not current or past injectors) are employed to provide advice, information or referral to other agencies for drug injectors not in contact with agencies. This is the form of outreach which predominates in the UK and some have suggested that this has limited its effectiveness¹¹⁷. This approach is restricted both by the numbers of contacts that can be made and by the fact that those contacts tend to be 'one to one' and unsustained.

Outreach workers can affect behaviour by:

Being able to offer on the spot advice to groups of injectors

Carrying a range of sterile injecting equipment and being familiar with its safe use

Encouraging injectors to use other routes of administration

Encouraging safe disposal of used equipment.

Peer intervention

Peer interventions in their purest form are products of drug users' own efforts to limit drug-related harm. They can be assisted, encouraged and advised in maximising the potential benefits to be gained from such interventions.

As Rhodes says:

"...drug users' risk behaviour is not simply the product of individual's beliefs and intentions, but also depends on the types of social relationships and situations in which such behaviours occur, and the social norms and values of particular peer groups, social networks and subcultures."¹¹⁸

Examples of encouraging peer-based projects include:

Indigenous leader models which seek to identify important members of communities or networks¹¹⁹

Approaches which aim to reward peer educators for the number of contacts they make and the amount and quality of information passed on¹²⁰.

A particularly practical guide to community-based peer intervention has been produced by the North Thames Peer Intervention Forum¹²¹.

This advice on working with young people is adapted from the model 'Agency policy for the provision of needle exchange services to young people and guidelines to inform its implementation'¹²². Advice on policy and practice is also available from the Standing Conference on Drug Abuse, tel: 0181 928 9500.

Working with young people is different from working with adults. There is a clear legal and moral duty for services to work in collaboration with other services, with the best interests of young people as paramount. To do this a more comprehensive and holistic assessment of the client, than that required with adults, is needed.

All agencies considering offering a service to young people should adopt a policy and this should be approved by the local Area Child Protection Committee.

Agencies may also want to present such a policy to the Drug Action Team and relevant Drug Reference Group for ratification and incorporation within the district's broader response to drug use and young people.

It is unlikely that pharmacy syringe exchange schemes would be able to provide the level of assessment that is required before handing injecting equipment to young people and they would be best advised to refer young people to those local specialist agencies who have an agreed policy and can provide appropriate care.

Outreach workers are also often in a difficult position in terms of not having an adequate environment or the facilities or systems for appropriate record keeping. Services whose outreach workers are in contact with injecting young people need to agree policies with the local Area Child Protection Committee with regard to needle and syringe exchange.

Legal considerations in working with young people in England

Young people under 16 are under the care and control of their parents or legal guardians who legally should normally be involved in advice and help given. However, it is recognised by the courts that there are exceptional circumstances where advice and help can be given without their knowledge. These situations may be that:

The young person cannot be persuaded to inform parent(s)

Unless the young person receives the help and advice being offered they may continue to harm themselves

The young person is unlikely to begin or continue treatment if their parents are informed

It is in the best interests of the child itself.

There may be times, which will be the exception rather than the rule, when an exchange worker may have to act quickly in order to reduce the possibility of the young person being placed at further risk.

When balancing the needs of a young person ­ with respect to responsibility and duty of care ­ it may be necessary to compare the harm which the young person has suffered (e.g. injecting drug, sexual abuse) with the risk she or he may suffer in the future if contact with services is not maintained.

The major question for the worker to consider is: in the light of available knowledge, what actions are likely to reduce the amount of risk in the present and future? This will mean that the assessor has to consider the wider context of past, present and future drug use in terms of improvement or change.

When a decision to provide injecting equipment is made, this must not be thought of as a final outcome but part of an ongoing process of assessment that must be continually reviewed, looking at the young person in a holistic manner. There need to be changes/improvements in their personal, emotional and physical development as well as in their lifestyle and drug use.

Parental consent

The decision-making process around the provision of needle exchange services to young people must include careful consideration of whether or not to include adults who have parental responsibility for the child.

Many parents will be helpful and supportive in the treatment of their child; however, sometimes discussing treatment with parents may result in deterring the young person from seeking the help they need or exacerbating their problems.

However, the decision to work with a young person without informing parents must be exceptional and only taken after having considered the possible positive contribution that they can make in resolving the many different issues and circumstances leading to their child's drug use.

The Children Act 1989 introduced the concept of parental responsibility i.e. all the rights, duties, powers, responsibility and authority which by law a parent of a child has in relation to the child and his property.

However, another key aspect of the Children Act 1989 is the statement that parental rights yield to children's rights to make their own decisions, once children have enough understanding and intelligence to make up their own minds.

Prior to the Act, case law had established that the older the child, the less extensive parental responsibility may become. Lord Denning observed in Hewer v Bryant (1969) and quoted in the Health Advisory Service report The Substance of Young Needs (1996):

"the legal right of a parent ends at the 18th birthday, and even until then, it is a dwindling right which the courts will hesitate to enforce against the wishes of the child, the older she or he is. It starts with a right of control and ends with little more than advice."

The Victoria Gillick case
The Law Lords ruling in the 1986 Gillick v West Norfolk and Wisbech Area Health Authority case emphasized that the parental power to control a child exists not for the benefit of the parent but for the benefit of the child. Lord Scarman said:

"Parental rights clearly do exist, and they do not wholly disappear until the age of majority. But the common law has never treated such rights as sovereign or beyond review and control Parental rights yield to the child's rights to make his own decisions when he reaches a sufficient understanding and intelligence to be capable of making up his own mind on the matter requiring decision".

It is important to understand that Lord Scarman's ruling considered medical treatment (in that case, oral contraception) and that the judgement may not apply to other professions and types of interventions. In any event, Lord Scarman suggested that it would be good practice (but not a legal duty) for a doctor to urge a minor to consult a parent. However, the doctor does have the right to proceed without parental consent.

Informed consent

The concept of informed consent is an important one. To give informed consent an individual must be:

In receipt of the full facts

Able to understand the situation and its risks

Able to balance the pros and cons that have been put to them.

It is a matter of intellectual ability, maturity, development and language. A worker must demonstrate in their notes that they evaluated a young person's ability to give informed consent to receiving injecting equipment if it is dispensed without the knowledge and consent of their parents.

Risk assessment

When making the decision about supplying injecting equipment to a young person, the worker must undertake a risk assessment.

Assessments need to be carried out in such a way so as not to increase the young person's anxieties and fears. Often young people are aware that they may have been at risk for example, from infection, but they are not ready to face their fears. It is a priority for the worker to enable the young person to return for a second visit and therefore gain their trust, as well as assessing the risks they face both from injecting drugs and their social circumstances.

In many cases, young people, like adults attending needle exchanges, will not want to talk about social or non-drug-related factors. However, there is a duty to consider wider aspects than simply injecting behaviour when working with young people.

When assessing a young person's risk, in the first instance it is important to ensure that it can be demonstrated that the young person has a sufficient knowledge and understanding needed to inject drugs safely, and to establish that by supplying them with clean injecting equipment the risks to the young person are lessened. Questions should be simple and unobtrusive.

Record keeping

In this difficult area decisions must not be taken in isolation and the reasons for a decision must be recorded. Although experience suggests that the more bureaucratic an agency appears to be to the clients, the less likely it is to attract young people, records must be kept.

All work with young people needs to be carefully documented. A descriptive account of the contact is not enough: the worker must demonstrate their intention that the action was believed to be in the child's best interests.

The reason for recording is to:

Demonstrate how decisions have been made

Document the intended outcome

Inform later discussion and decision making.

In some circumstances, recording may have to take place later (preferably immediately after the consultation). In such instances, details about how and when these details were recorded should also be included.

As well as recording the decision and decision-making process regarding provision of needles and syringes to a young person, all aspects of the ongoing process of assessment, reassessment and holistic review of the young person's care must be recorded. The recorded information should be the basis for a discussion between the worker and manager or colleagues. This discussion should also be recorded.

Training, supervision and support

It is essential that when policy and risk-assessment guidelines for working with young people are adopted by agencies, adequate training, supervision and support services for the staff working in needle exchanges are provided.

Agencies will need to look at the skills and experience of individual members of staff as well as referring to Drug Action Team training strategies and training offered to child protection workers.
However much training staff have, it is advisable that in each agency there are a number of specialist or designated workers who give priority to young people.

It is vital that needle exchange schemes should develop working relationships with generic and specialist youth services as well as specialist drug services. Multidisciplinary training on drugs and young people, as well as risk assessment, can serve a dual function that can increase liaison and contact.

In addition, Area Child Protection Committees should identify a social services worker to attend needle exchange staff meetings. The liaison worker(s) should also be available for discussions about actual or hypothetical cases. In return, needle exchange workers should liaise and attend regular meetings with Child Protection Teams.

Needle exchange schemes have always attracted fewer women than men. Although there may be fewer female injectors, women are likely to be underrepresented in the majority of needle exchanges.

Factors affecting this are:

The stigma felt by many female injectors as injecting by women is often perceived as less culturally acceptable

Concerns by women injectors about child protection issues

Perceptions that agencies are 'more for male injectors'

Intimidation by male injectors

Agencies often not child or parent friendly.

Historically many factors have caused society to judge women's drug use as different and more problematic than men's. Much of this is concerned with women's traditional role in child care.

Care has to be taken for agencies not to fall into the trap of attempting to increase contact with female injectors by concentrating only on issues surrounding reproduction and child care.

Steps which may promote more female injectors using services would include:

Women only sessions (including staff)

Provision of female-specific services such as smear testing, pregnancy testing, contraceptive advice and midwifery liaison

Making services more child friendly

Awareness of female-specific injecting issues such as greater difficulty in accessing superficial veins and breast injecting.

Traditionally, drug services have been managed, staffed and run overwhelmingly by and for the white population. There is sometimes a perception that the services are not for minority ethnic groups.

It is incumbent upon services to have equal opportunities policies to offer culturally appropriate services to ethnic communities as a whole, and to the drug users within those communities.

Research by Robert Power (and others) has identified that heroin use and injecting drug use in general tends to be disapproved of within Afro-Caribbean communities. Injecting drug use within those communities is much more likely to be secretive and individuals are less likely to attend needle exchanges.

Power refers to this as 'double alienation' and quotes a 33-year-old male Afro-Caribbean crack and heroin user:

"Black injecting is hidden. You can't admit that you do, so you find yourself with more white friends who you can't trust"⁶¹

Power talks of unhelpful and stereotypical beliefs about drug users which he neatly summarises as,

"Heroin = injecting = white = junkie;

Black = crack = smoking."

Although there is evidence of changes in cultural attitudes and the visibility of injecting in black communities, unless agencies take account of the cultural factors within communities, and reflect them in the staff they employ and the type of work they are prepared to undertake, little will happen to alter the status quo.

Although the resource implications would often appear to make separate services for groups such as steroid users impractical, some have argued that more steroid users would be more likely to attend such dedicated services.

Within existing services, measures which will help to attract and maximise the availability of equipment to steroid injectors include:

Peer outreach in gyms

Information in gyms

Specific sessions allocated at syringe exchange for steroid users

Health information about the use of steroids.

The majority of prisoners who inject, cease injecting on entering prison¹²³. However, a substantial minority do not. This group continues to inject, although less frequently.

Because of the scarcity of injecting equipment, injectors are likely to engage in very high-risk behaviours for transmission of blood-borne viruses, many of which they would not countenance doing outside prison.

There is also evidence that a proportion of injectors start their injecting careers whilst in prison¹²⁴.

A study by Turnbull et al.¹²³ showed that the main drugs used were cannabis, heroin, tranquillisers and anti-depressants, and that frequency of injecting in prisons was related not only to supply of drugs, but also to availability of injecting equipment.

Injecting equipment may be obtained in UK prisons at present by:

Bringing in 'sawn off' syringes, often anally or vaginally

Borrowing previously used equipment

'Hiring' previously used equipment

Stealing equipment from prison hospitals

Manufacturing injecting equipment from available materials.

Turnbull et al. noted that many prison injectors only classed using previously used equipment as sharing if it had been used very recently, or at the same time as themselves.

There is a need to reduce the incidence of sharing of injecting equipment in prison. Current and past policies of control of drug use in prisons clash with the public health imperative of preventing the spread of blood-borne viruses.

Concerns have been raised that policies such as mandatory drug testing of prisoners, which has been introduced in UK prisons, possibly increase risks associated with drug use. Drug users may be more inclined to use drugs with shorter detection times in urine, such as heroin, rather than those which have much longer detection times, such as cannabis.

Caution should be employed when assessing the success of initiatives to reduce drug supply within prisons. Lowering the quantity of drugs entering prisons is an aim of prison authorities. Amongst the undesirable consequences of a reduction in supply may be an increase in injecting in order to maximise the effect of a limited resource. It has been suggested that wraps of heroin available in UK prisons can contain as little as 1/90th of a gram of heroin¹²⁵.

Whilst the introduction in all prisons of bleaching agents would be welcome ­ since proper bleaching is probably better than doing nothing at all ­ experience outside prisons of bleaching practices¹²⁶ shows that they are idiosyncratic even when optimum conditions exist. The nature of the prison environment means that cleaning and bleaching of injecting equipment will often be unsatisfactory, simply because the resources and opportunity will not be available.

The World Health Organisation guidelines for prison HIV services say:

"All prisoners have the right to receive health care, including preventive measures, equivalent to that available in the community without discrimination, in particular with respect to legal status or nationality."

The guidelines go on to say:

"Preventive measures for HIV/AIDS in prison should be complementary to and compatible with those in the community. Preventive measures should also be based on risk behaviours actually occurring in prisons, notably needle sharing among injecting drug users and unprotected sexual intercourse."¹²⁷

Many objections are put forward against the development of prison syringe exchange. These include arguments that:

It is condoning an activity that the prison does not allow

Needles could be used as weapons

That it will increase the incidence of injecting.

Similar concerns voiced initially about community projects were overcome. However, in talking about the prison population, UK politicians are very keen on being seen to be 'tough on crime' and relaxing the prison rules would, no doubt, be seized upon by sections of the media as 'going soft on crime'.

However, despite this, it is also clear that many of the objections listed are probably not realistic or pragmatic. The commonly voiced view that if injecting equipment was supplied, then needles could be used as weapons, ignores the fact that many potentially infected syringes and needles are already circulating in most, if not all prisons.

Many individual prisons and prison workers are committed to helping to limit the spread of blood-borne viruses. This work should be supported and assisted by the introduction of realistic resourced policies to help control the spread of viruses within prisons.

There are currently pilot prison syringe exchange programmes operating in Switzerland and Germany. If these projects are demonstrated to be successful it is likely that other EC countries will begin to provide sterile injecting equipment within prisons.

Specialist prescribing services

Much syringe exchange in the UK is currently available as a component part of specialist prescribing services. These specialist services may be provided by either the statutory or voluntary sectors, and may or may not include drug treatment. There are examples of good practice from both sectors (see Tables 7.1 and 7.2). In practical terms, syringe exchange can be provided alongside treatment services, but there can be problems with this approach.

Table 7.1: Pros and cons of separate services

Table 7.2: Pros and cons of integrated treatment and syringe exchange services

Adequate preparatory work is essential when establishing new schemes. This will include obtaining the correct planning permission and assuaging some of the fears of local residents and businesses.

It is good practice for agencies to establish competency levels for advice giving by workers.

Staff support and training are vital in the provision of quality services.

Services should ensure that they are, as far as possible, providing a needle exchange service to all injectors in their area and not discriminating on the grounds of race, gender or drug of choice.

Provision of advice and injecting equipment to under 16s must be conducted within an adequate policy and practice framework.

Prisons are an area where development of adequate services for drug injectors is overdue.