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Chapter 13: Discussion, conclusion and recommendations

The National Needle Exchange Survey was the most in-depth study of needle exchange service provision ever undertaken in the UK. The Scottish arm of the study involved three postal surveys (of DAT officers, non-pharmacy service providers and pharmacy co-ordinators) and three focus group discussions. Through these different means, the study gathered data about needle exchange services in every part of Scotland.

The first two aims of the study were: (i) to map needle exchange provision and (ii) to investigate the nature of that provision.

Mapping needle exchange provision in Scotland

The survey identified a total of 188 needle exchange outlets in Scotland - 136 pharmacy exchanges, 43 specialist exchanges, six police custody suite exchanges and three A&E exchanges. Nearly half of Scotland's specialist services were delivered through mobile and/or outreach provision.

This study included a survey of pharmacy needle exchange co-ordinators, but did not involve a direct survey of pharmacy needle exchange providers. However, the aims of the study did not require this additional survey, nor did the timescales for the study permit it. Moreover, several studies of pharmacy drug services have previously been undertaken in Scotland (Matheson et al 1999; Matheson & Bond 1999; Matheson 1998). One of these - a large survey of all community pharmacies - identified 91 pharmacy needle exchange schemes in Scotland in 2000. This level of pharmacy provision had not changed significantly in the previous five years (Matheson et al 2002). This would suggest that the current level of 135 pharmacy exchanges represents a relatively recent growth in pharmacy provision. This point is supported by findings from the present study which indicated that, in many areas of Scotland, budgets for pharmacy needle exchange have increased over the past three years while budgets for non-pharmacy exchanges have decreased or remained static. ( See again Chapter 9.)

The nature of needle exchange provision in Scotland

The study found variation in practices among needle exchange services across Scotland. In some cases, these variations appeared to be strongly associated with NHS Boards. Citric acid - and paraphernalia provision in general - were examples of this. On-site BBV interventions such as testing and immunisation were also examples. ( See again Chapter 6.)

In other cases, the variations appeared to be at the level of individual services, and indeed, there were numerous examples where needle exchange facilities within the same NHS Board or DAT area provided quite different types of services.

Practices related to client assessment and review are examples of this. Less than a quarter of non-pharmacy services (10 out of 45) reported that an initial assessment was always undertaken with new clients before sterile equipment was provided. Other examples of variation related to on-site interventions such as counselling, care for minor infections, overdose prevention training and nutritional advice. Some services offered these interventions and others didn't.

At a more basic level, a third of non-pharmacy services (17 out of 45) said they did not offer their clients referral to structured treatment. Similarly, the co-ordinators of 8 out of 10 pharmacy schemes said that their pharmacists neither provided formal referral or even a list of local treatment services. This finding was somewhat unexpected given the view held by many of the participants in this study that needle exchange services acted as a gateway to treatment services.

Some of these issues are discussed in more depth below. However, it may be worth focusing here on the variations that appeared to exist in relation to needle exchange provision for young people.

Needle exchange for young people

Only two-fifths of non-pharmacy services in Scotland (18 out of 45) had a written policy or protocol on the provision of injecting equipment for young people. And in only three cases had these policies been agreed with the local area Child Protection Committee. Services in England were significantly more likely than services in Scotland to have written policies and protocols on needle exchange for young people, and to have agreed these policies and protocols with local Child Protection Committees.

To some extent, this situation will be related to the fact that needle exchange services in Scotland see relatively few young people under the age of 18. Service providers from all over Scotland reported that it was very rare indeed for under-16s to present to needle exchange services. And yet, Scottish service providers were more likely than their English colleagues to say that they would provide injecting equipment to young people aged between 16 and 17.

In June 2005, DrugScope published guidance on needle exchange to young people (DrugScope 2005). This document made the point that needle exchange for young people under 18 must be delivered as part of a planned package of treatment.

Independent, anonymous needle exchange provision for young people is not good practice due to the different legal status of young people (p. 1).

The document also discussed the issues of consent, confidentiality and staff competencies required to provide needle exchange to young people. Many of these same issues were raised by Scottish practitioners participating in the current study. ( See again, Chapter 7.)

The lack of a written policy or protocol does not necessarily imply the lack of a protocol altogether, nor does it imply that services are not operating according to agreed best practice in this area. However, it does suggest there may be variation in the way Scottish needle exchange services respond when they are presented with a young injector.

Given current political priorities in Scotland in relation to preventing drug use among young people, services should be encouraged as a matter of urgency to develop and agree written protocols and policies in this area, and to agree these protocols and policies with other local stakeholders including local Child Protection Committees.

How are services in Scotland doing in relation to the Shooting Up recommendations?

At the very beginning of this document, it was pointed out that the annual Shooting Up report published in October 2005 made specific recommendations regarding needle exchange services in the UK ( HPAet al, 2005). These included:

• Ensuring sufficient distribution of injecting equipment to prevent the sharing of needles and syringes
• Providing injecting-related equipment other than needles and syringes as appropriate
• Ensuring an appropriate range of needle exchange services are provided ( i.e., through drug services, pharmacies and mobile or outreach services)
• Ensuring appropriate training for needle exchange staff
• Expanding the educational role of needle exchange services
• Expanding the services available through needle exchanges - to include on-site vaccination for Hepatitis B, and testing for HIV and Hepatitis C.

The findings from the National Needle Exchange Survey provide an indication of what and how Scottish services are doing in relation to these recommendations.

Ensuring sufficient distribution of injecting equipment

In Chapter 5, it was reported that at least 3.5 million syringes were distributed by Scottish needle exchange services in the one-year period between April 2004 and March 2005, with roughly an equal number of syringes distributed by pharmacy and non-pharmacy services across the whole of the country.

It is of concern, however, that in some DAT areas, there would appear to be far from sufficient distribution of sterile injecting equipment. A calculation of the number of syringes distributed per injector in each area showed considerable variations between DATs. (See again Table 5.5.) Even taking into account questions about data quality, even if only half of the estimated injectors in each DAT area are actually attending needle exchange services, and even if some of the injectors in each DAT area obtain their syringes from a neighbouring area, the level of syringe distribution in most areas of Scotland is inadequate. This finding echoes a statement made in the Greater Glasgow AIDS (Control) Act Report for 2003-04, which found that 1 million needles / syringes had distributed by Glasgow needle exchange facilities in the year 2002-03. However, it estimated the total number of injecting episodes among Glasgow injectors to be 7-12 million a year ( NHS Greater Glasgow 2004, p. 16).

What is also of concern is the practice that some services had of setting arbitrary limits on the number of syringes that were given out to injectors - particularly, as focus group participants mentioned, where these limits were used punitively. Such practices are not conducive to safer injecting.

However, setting these issues aside, it must also be acknowledged that injectors themselves often choose not to take a sufficient number of syringes for their own injecting needs (Taylor et al 2005). This behaviour presents a serious challenge to needle exchange services - and it requires the development of new and innovative methods of engaging with and educating IDUs.

On a more positive note, home delivery / back-packing services are clearly very well-placed to ensure that their clients have a sufficient number of syringes. Reports from focus group participants suggested that these services were more successful than other types of needle exchanges in reaching "hard-to-reach" populations. Women injectors in particular were often better served by back-packing services than fixed-site, or pharmacy services. Furthermore, these services also had better return rates.

Providing injecting-related equipment other than needles and syringes

The majority of Scottish needle exchange services - both pharmacy and non-pharmacy services - distributed wipes and swabs, sharps bins and citric acid in addition to sterile needles and syringes. Services that did not supply citric acid were located mainly in two NHS Boards - Grampian and Highland, although it would seem that the pharmacy schemes in Ayrshire & Arran and Orkney did not distribute it either. At the time of writing this report, steps were being taken to pilot citric acid provision in services in Highland.

Very few Scottish services provided stericups (or other forms of spoons or "cookers"), filters or sterile water to injectors, and it would appear that Scottish services were significantly less likely to provide these items of paraphernalia than English services.

The participants in the study saw it as patently unfair that service users in some NHS Boards received a wide range of paraphernalia and others received none. This situation was seen to send mixed messages to clients about what constitutes safe practice, and services felt it also undermined their credibility with their clients.

What is even more worrying is that some NHS Boards are currently faced with the prospect of having to cease distribution of certain items of paraphernalia which had previously been provided for free.

Written comments on the questionnaires and focus group discussions in Scotland highlighted that many service providers and commissioners felt the need for national guidance and standards on paraphernalia distribution. It was felt that such guidance would help to significantly reduce inequalities in provision, although it must also be noted that, at the present time, there is no evidence of the effectiveness or safety of some items of paraphernalia.

Ensuring an appropriate range of needle exchange services

Across Scotland, pharmacy services outnumbered specialist services by a ratio of 3:1. The Shooting Up report did not specify what an "appropriate range" of services would entail. Nevertheless, the findings from this study would indicate that both pharmacy and specialist services are needed. Furthermore, data from the focus groups suggests that pharmacies must been seen as providing a complementary, rather than alternative, service to specialist needle exchange facilities, as pharmacies are not generally able to provide the necessary range of interventions that are required to reduce injecting-related harm.

According to participants in this study, the main benefits of pharmacy needle exchange were that:

• Pharmacies were often more accessible than other types of needle exchange services in some areas. Most pharmacies are open 9.00 - 5.30 six days a week.
• Transactions in pharmacies are fast and discreet. Some clients prefer to use pharmacy exchanges for this reason.
• It is cheaper to provide needle exchange through a pharmacy, rather than a specialist service, because pharmacies can distribute sterile injecting equipment as part of their existing business, without additional overheads.

However, it was felt that efforts to expand pharmacy service provision in many areas of Scotland had to be better balanced with good provision of specialist services too. The concerns voiced about pharmacy provision were that:

• Pharmacies don't, and can't, provide the same breadth and depth of service as a specialist harm reduction service.
• There isn't sufficient time and space in a pharmacy to have a consultation with service users about safer injecting practices. Similarly, most pharmacies have limited space for storage and cannot get involved in pick-and-mix distribution of paraphernalia for this reason.
• There can be a problem with negative attitudes to drug users among pharmacy staff, particularly in rural areas.
• Pharmacy services generally get fewer returns.
• The high turnover of pharmacy counter staff requires regular and on-going training which can be difficult to keep up with.

In addition to this, it must be noted that injectors in rural areas were often reported to be reluctant to use the local pharmacy exchange for reasons of confidentiality.

Focus group participants felt that pharmacy services were most appropriate for older, stable injectors, while younger and chaotic injectors were seen to be better served by specialist services. This view is echoed in the DrugScope guidance on services for young people:

We expect that pharmacists will neither have all the appropriate skills or time to undertake the level of assessment and care planning required to provide needle exchange to those under 18 years old. As such, we recommend that pharmacists do not provide a needle exchange service for [this population], but rather encourage young people to visit appropriate alternatives (p. 5).

While on the one hand, specialist service providers often expressed concern about what they perceived as differing standards between pharmacy and specialist needle exchange, it was generally accepted that needle exchange is just one of many services provided by community pharmacies.

There was a feeling that pharmacies and specialist harm reduction services should, can and do work together and complement each other. Examples were given from across Scotland of positive collaborative working relationships between pharmacy and non-pharmacy providers, particularly in relation to using pharmacy consultation rooms to host BBV testing and immunisation, wound clinics and other specialist harm reduction interventions. Examples were also given of specialist harm reduction nurses providing regular and on-going support to pharmacy exchange providers, and this support resulting in improvements in knowledge and attitudes among pharmacy staff.

Ensuring appropriate training for needle exchange staff

Again, the Shooting Up report did not specify what would constitute "appropriate training" for needle exchange staff. Nearly half of non-pharmacy needle exchange services in Scotland employed a member of staff with an academic qualification in drugs work, and many employed a qualified RMN or RGN. These findings are positive and would seem to suggest a very high level of qualification among Scottish needle exchange workers. However, it was also clear that there is currently no standardised training for non-pharmacy needle exchange workers.

It seems there is also no standardised training for pharmacy needle exchange providers. Training was organised locally, and the nature and frequency of on-going support and training for pharmacy staff appeared to vary widely across Scotland.

A number of survey respondents highlighted the lack of standardised training among needle exchange workers as an impediment to good practice in their area.

Expanding the educational role of needle exchange services

This study did not address the educational role of needle exchange services in depth. However, in drawing together the findings from a number of questions, some inferences can be made about the extent to which needle exchange services in Scotland are taking on an educational role.

For example, it was found that, in those services which undertook an initial assessment of their clients' needs, over two-thirds said they discussed safer injecting techniques, the sharing of needles, syringes and other paraphernalia, and overdose risks.

Nearly all non-pharmacy services (apart from the police custody suite exchanges) provided face-to-face harm reduction advice to their service users. About a third said they provided on-site overdose prevention training, and slightly less than a third provided nutritional advice.

In terms of the educational role of needle exchange services, these findings seem relatively positive, although it must be pointed out that Scottish services were less likely than English services to provide many of these interventions.

Few pharmacy exchange schemes seemed to have much of an educational role with their service users. While nine of the 10 pharmacy co-ordinators who participated in this study said that their pharmacy schemes distributed written information on harm reduction, only half said that their pharmacists provided harm reduction advice to their clients. Again, with adequate training and support, it should be possible for the educational role of pharmacy staff to expand in relation to needle exchange. However, these findings would again argue (as above) in favour of ensuring a more balanced provision of pharmacy versus specialist needle exchange services in local areas.

Expanding services available through needle exchange - to include on-site vaccination for Hepatitis B, testing for HIV and Hepatitis C

The use of needle exchange and drug treatment services to provide injectors with access to vaccination, testing, and indeed, treatment for BBVs has been recommended not only in the Shooting Up report but also by the Royal College of Physicians of Edinburgh in the statement from their Consensus Conference on Hepatitis C, held in April 2004. ¹³

The latter has reported that only half of individuals referred for Hepatitis C testing and treatment actually attend clinic appointments (item 3 of the Consensus Statement). A new community-focused model of care was called for, and it was suggested that this should be delivered through outreach nurse-led clinics in primary care, in prisons or in drug services.

This study found that less than half of Scottish needle exchange services offered any form of on-site intervention related to BBVs. The interventions offered most frequently were HIV and HCV pre- and post-test counselling. Two-fifths of services offered on-site HCV testing, but less than a third offered HBV testing or immunisation, HIV testing or HAV immunisation. And again, Scottish services generally appeared to be less likely to offer these interventions than their English colleagues.

Of course, the fact that services do not provide BBV interventions on-site does not imply that service users do not have any local access to these interventions. However, agreed "best practice" would be to offer these interventions where injectors are already accessing services, rather than to refer them to other services. This would almost certainly result in greater uptake.

Areas of good and innovative practice

The third objective of the National Needle Exchange Survey was to identify areas of good and innovative practice. In Scotland, these were identified as:

• providing a range of services - pharmacy, specialist, outreach and mobile;
• developing and expanding services on the basis of formal needs assessment;
• use of outreach in general for remote and rural populations and to target high-risk groups;
• positive joint working relationships between services;
• use of pharmacy consultation rooms by specialist harm reduction nurses;
• the involvement of service users in developing or delivering services;
• developing trust with service users; and
• ensuring good training and support for service providers - particularly pharmacists.

Difficulties and impediments to good practice

The final objective of the study was to identify difficulties and impediments to good practice. In Scotland, the biggest problems were seen to be related to:

• funding shortages;
• lack of standardisation in paraphernalia distribution;
• negative public attitudes;
• negative staff attitudes (especially among pharmacy staff); and
• staff shortages.

Strategic issues in relation to needle exchange

The problem of under-funding

One of the messages voiced most strongly by focus group participants throughout this study was that needle exchange services across Scotland are under-funded and under-valued. People referred to them as "Cinderella services." Policies on anti-social behaviour were often seen to have higher priority and attract more funding than public health policies for injecting drug users.

Focus group participants in this study reported that the lack of sufficient funding contributed not only to the lack of accessibility of services in some areas, but also many of the variations in practice between services.

Recent changes in allocations of BBV prevention funding have benefited some areas in Scotland, but have resulted in frozen budgets (effectively a loss of funding) for other areas. Service providers expressed frustration that recent legislative changes have made it permissible to distribute a wide range of paraphernalia to injectors, but that funding allocations haven't changed to reflect this.

Data collection and management

However, it must also be pointed out that this study highlighted problems throughout Scotland in data collection, management and co-ordination of needle exchange services at DAT level. It was clear that in many areas, those who are responsible for commissioning services do not routinely have access to sufficient and detailed information upon which to base their planning decisions. While there were examples of comprehensive needs assessments being undertaken in one or two areas, these tended to be the exception rather than the rule in relation to planning needle exchange service provision in Scotland.

Concluding remarks

This survey has highlighted variation in practice in relation to all aspects of needle exchange provision in Scotland. In some cases such as the provision of paraphernalia and on-site BBV interventions, this variation is associated with NHS Boards. But in other areas, it would seem that some needle exchange services simply do things differently than other needle exchange services. The question which must be asked is: Is this variation acceptable?

While it may be acceptable for pharmacy exchange services to be different from police custody suite exchanges, and for specialist services to deliver different interventions than A&E exchanges, it is not clear why there should be large variations in practice between specialist services, or between pharmacy schemes in different parts of Scotland.

Many of the needle exchange professionals, and commissioners of needle exchange services who participated in this study argued for greater standardisation. People wanted to see more standardised training for needle exchange providers, and greater standardisation in data collection and monitoring systems. People also wanted to see official guidelines in relation to paraphernalia distribution.

However, many also pointed out that their aspirations for service development were limited by lack of funding. Having said that, there were clearly also instances where local Health Board policy, rather than funding per se, was the main limiting factor.

Recommendations

Given the findings of this study, the following recommendations are made.

Recommendations to the Scottish Executive

• In co-ordination with the Scottish Drugs Forum and other stakeholders, develop standards for needle exchange services in Scotland. Different standards may be required for specialist, pharmacy, police custody suite and A&E exchanges.
• In co-ordination with STRADA and NHS Education Scotland, develop a module or standard training course for all specialist and pharmacy needle exchange providers, and ensure that this training is regularly updated.
• Develop guidelines regarding paraphernalia distribution in Scotland, and put in place mechanisms to ensure compliance with the guidelines by NHS Boards. There may be some delay in this until the results of on-going research regarding the safety and effectiveness injecting paraphernalia are published. In the meantime, however, the Executive should ensure that citric acid is distributed for free by all needle exchange services throughout Scotland.
• Increase funding to needle exchange services, to ensure that services are able to distribute an adequate number of syringes and other paraphernalia to their service users. Increased funding would also allow local areas to develop greater use of outreach services.

Recommendations to NHS Boards and Drug Action Teams

• Provide funding to all needle exchange services for citric acid distribution.
• Ensure that there is a balance between pharmacy and specialist needle exchange provision in local areas.
• Put in place systems for regular monitoring and reporting of needle exchange transactions (including gender and age of contacts) and numbers of syringes and other items of paraphernalia distributed.
• Put in place systems for regular reporting from local authority Environmental Health / Public Health services on discarded sharps and needle stick injuries to the public.
• Ensure that all needle exchange providers receive appropriate training, particularly in relation to injecting techniques, prior to providing a needle exchange service.
• Ensure that pharmacy exchange providers receive on-going training and support from a specialist harm reduction provider.
• Ensure that all needle exchange services have written protocols / policies on the distribution of sterile injecting equipment to young people under 18 and separate policies for under-16s. Ensure that these protocols / policies are agreed with local area Child Protection Committees.
• Reduce barriers to accessing BBV testing and immunisation services, by making such services available through needle exchange facilities.
• Improve integration between needle exchange and other local services, by arranging on-site access to primary care sessions, wound clinics, nutritional advice and housing, social welfare or legal advice.

Recommendations to needle exchange providers

• Put in place mechanisms for assessing the needs of clients and regularly reviewing those needs.
• Put in place mechanisms for assessing client satisfaction at regular intervals.
• Develop written policies and protocols regarding needle exchange provision to under-18s, and separate policies / protocols for under-16s. Involve local area Child Protection Committees in this process.
• Develop methods of better engaging with and educating injecting drug users, and share both failures and successes with other service providers. This can be done through the Scottish Needle Exchange Workers Forum.

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