TAKING PART, TAKING POWER

by Greg McFarlane

Chemical Reaction started off in the summer of 1994 as a users group for people with drug and alcohol related problems. The initial purpose of this group was to input into Lothian's Community Care Plan. This was very much in line with the NHS and Community Care Act 1990 which gives local authorities an obligation to consult with service users.

The initial purpose was achieved by Tam Miller (a local service user) facilitating a series of workshops involving users of drug and alcohol services in South East Edinburgh. Seven of the 13 central policy aims which appeared in the final version of the Lothian Community Care Plan for 1996 - 1998 had been identified at the workshops. In the Local Community Care Plan for South East Edinburgh 14 of the 24 main policy points it contained had been identified at the workshops.

Not only was it heartening that the local authority had taken notice of the group's views but that it had acted upon them was particularly positive for those involved. The fact that the group felt that they had been listened to provided the impetus for them to stay together and to form a users group which aimed to identify and tackle issues that affect drug users in their everyday lives. It also wished to challenge the view that drug users were passive recipients of care.

Chemical Reaction soon learned that there were similar groups establishing themselves elsewhere in Scotland, notably the Vocal Re-entry Group in Dundee and Network Ayrshire. Scottish Drugs Forum (SDF) brought these three groups and other individuals from around the country (who were in the process of setting up user involvement in their own areas) together as a focus group with a view to producing a policy statement on user involvement. A policy statement on user involvement was duly produced and published in August 1996. This was an important milestone in that it gave the respective groups ideas about how they might develop further.

One of the first tasks the user group set itself was to find a name, which was not an easy task and it took months before we finally decided on Chemical Reaction. The second and vitally important issue we agreed upon as a group was that we wanted, initially at least, to consolidate and become fully established and recognised in the Craigmillar area of Edinburgh

One of the first positive actions the group pursued was to approach Craigmillar Surgery with a request to discuss various issues of concern that drug users had about prescribing practices in the area. This was met with a positive response although we were asked to submit an agenda covering the main issues we wished to raise to them before the surgery would agree to meet us.

In the meantime the group had a wide ranging discussion about whether we should seek a meeting with Chief Inspector Jinty Kerr the then head of Lothian and Borders Drugs Squad with a view to raising issues of concern about policing in the area. There was concern that such a meeting could affect the group's credibility amongst the wider drug using community, but it was decided that on balance it would be worthwhile to raise the group's concerns with the drug squad and see what transpired. The group's main concerns centred around uniformed police not being fully conversant with the Misuse of Drugs Act 1971; particularly in terms of Temazepam which at that time was still classified as a Class C (Schedule 4) drug. In other words it could be possessed in medicinal form without a prescription. Chemical Reaction had strong anecdotal evidence that uniformed police were confiscating Temazepam if they found them on someone during a stop and search procedure. In the event the group had a fairly constructive meeting with Chief Inspector Kerr at which members were able to communicate their concerns about policing in Craigmillar as it pertained to drug users.

Around that time the group decided that if it was going to continue meeting with such service providers then it would be useful to produce a newsletter outlining its activities. It was considered that this would enable people who might not want to actively take part in the group (for whatever reason) to find out what the group was doing, who it was talking to, and what the results of our meetings and consultations were. Hence Issues of Substance was born.

Following the meeting with Craigmillar Surgery which eventually took place after lengthy negotiations and much reassurances about Chemical Reaction's intentions, it was agreed that a report of the meeting be included in Issues of Substance. On hearing of the intention to produce a report the surgery insisted on having sight of the draft before it was published. Chemical Reaction complied with this request, however in the event there was so much tooing and froing that the group decided to publish it's version of the meeting. It was stressed in the published article that this was Chemical Reaction's summary of the discussion which had taken place and that the meeting had been a constructive "round table discussion".

When discussing the finished article one of Chemical Reaction's members commented that "this demystifies the power that doctors have over drug users and could we not do something similar with the CDPS". This set a pattern for Chemical Reaction's work. It seemed that no sooner was one issue tackled then another logically followed on and they progressed to the next phase or stage of work. It followed therefore that a meeting with consultant psychiatrist Judy Greenwood was arranged. A summary of that meeting appeared in the second issue of Issues of Substance and appeared to be well received by the readership.

The Ministerial Drugs Taskforce Report (1994) Drugs in Scotland: Meeting the Challenge recommended that locally based drug forums be set up. Drug forums were seen as the vehicle through which drug users would have their voice heard by Drug Action Teams and other local planning systems. Chemical Reaction regularly attend the South East Edinburgh Drug Forum. Chemical Reaction also joined a local Community Care Service Users Forum and played an active role in planning and delivering a service users conference Taking Part, Taking Power. This was very useful for Chemical Reaction as it meant we were meeting with other service users who had more experience of becoming organised, gaining recognition and ultimately influencing services.

One of the early decisions that Chemical Reaction had to make was whether they should become a fully constitutionalised group with their own written constitution, aims and objectives, etc. In the event it was decided not to go down that road. The reasoning was quite simple - drug users do not like overtly formal groups and meetings. It was decided that the support the group received from Edinburgh Voluntary Organisation's Council's (EVOC) Community Development Unit and South East Edinburgh's Consumer Involvement Officer plus the Castle Project was enough to provide the group with a recognised and legitimate role without the need for a more formalised arrangement.

The group realised that not having a formal constitution could present problems if, or when, it decided to apply for funding to help it carry on its work. Other groups such as Vocal Re-entry Group and Network Ayrshire not only compiled a written constitution but also sought registration with the Scottish Charities Commission. Through Chemical Reaction's contact with these groups it was quickly learned that there was a series of hoops which had to be jumped through to get such recognition. Chemical Reaction finally concluded that if the governance of Britain did not require a written constitution then why should a group of drug users?

What the group did consider worth doing was to produce a mission statement; which is as follows:

Chemical Reaction is a group of drug users who seek to influence service provision and policy, and other issues affecting drug users and to involve a larger number of drug users in that process.

Recently Chemical Reaction applied to the Edinburgh Health Project Steering Group for a grant and in the section asking for a copy of the group's constitution replied: "The group is not constituted through choice but has worked closely with Edinburgh Voluntary Organisation's Council and the Castle Project for 3 years." The group was delighted that despite not having a constitution its application was successful and a grant enabling the production of three editions of Issues of Substance, was duly received. The group was also funded to produce recruitment leaflets and a handbook on safer drug use written by drug users for drug users.

Clearly Chemical Reaction do not view themselves purely as a user involvement group. The group believes that 'user involvement' is a process carried out by drug user groups, but that drug user groups should not and indeed need not to be limited in what they can achieve. Through the experience gained and the confidence engendered amongst the group it was able to gradually broaden its horizons and extend its work into areas it would not initially have considered venturing into.

Advocacy is another important area of work for the group. For some time Chemical Reaction has been taking issue with a chemist who had insisted that people being prescribed methadone must carry an ID card when they are picking up their medication. Having failed to convince the chemist that this is an unnecessary measure, the group contacted the Scottish Council for Civil Liberties (SCCL) to ascertain whether the chemist's actions were a breach of civil liberties. The SCCL did consider the measure a breach of civil liberties. However the chemist retains the support of the Pharmaceutical Council and Lothian Health's Pharmaceutical Officer, and refuses to reconsider the practice.

Having failed in that instance Chemical Reaction demonstrated that it did not hold grudges and has recently added its support to chemists following the issue of a Scottish Office directive which cut the dispensing fee for instalment supply of medication. Chemical Reaction supported the chemists by writing to the Public Health Policy Unit at the Scottish Office pointing out in clear terms the detrimental effects such a cut would have on the health of many drug users.

In the most recent edition of Druglink (January/February 1997) an article entitled Drug Users are Doing it for Themselves - Again reported that "drug users are already cutting out the 'middle man' and directly addressing themselves to the issues that concern them most". It is the experience of Chemical Reaction that once a drug user group gains the necessary experience and confidence this progression of 'cutting out the middle man' becomes a natural consequence of its development. For example in 1995 when the Department of Health carried out its consultation prior to the re-scheduling of Temazepam from Schedule 4 to 3 Chemical Reaction made its views known through a submission. The group suggested that the drug should not be banned but that its' scheduling should be changed, making it illegal to possess without a prescription. In making this submission Chemical Reaction was aware that it was in the minority as the overwhelming opinion was that the drug should be totally banned. Nevertheless Chemical Reaction considered it was important that drug users views should be made known and duly wrote to the Department of Health with its comments. In the event Temazepam was in fact re-scheduled as suggested by Chemical Reaction. The group cannot claim to have been the main influence on that decision but its views would have been included in the process.

Another perhaps less contentious direct submission made by Chemical Reaction was to the Scottish Affairs Committee's inquiry into the implementation of community care. Chemical Reaction understand that it was the only drug user group to make a submission to the committee. The main point raised by Chemical Reaction was that in general community care seemed to bring fewer resources and increased paper work for service staff. Assessments seemed not to be appropriate, or did not lead to services. However, it did seem to work best when resources were invested in building greater trust and equal partnerships between service users and service providers.

Chemical Reaction's awareness of these consultation processes is due to their relationship with EVOC's community development worker who informs Chemical Reaction when such consultations are taking place. The fact that Chemical Reaction's members live locally and have regular contact with each other means that they can call meetings at short notice.

Chemical Reaction feed directly into planning structures in other ways - one of them was when Edinburgh City Council's social work department was consulting interested parties over plans for day rehab' services. The principal officer for drug services attended a meeting of Chemical Reaction with the express purpose of finding out what drug users views were for the proposed service. Another example of Chemical Reaction communicating directly with policy makers was when they became aware of a particular problem related to intermittent injecting drug use in Craigmillar. Much of the information was anecdotal but nevertheless represented a trend in risky behaviour amongst drug users in the area. The main problem was the very limited availability of clean works out of normal service hours. Chemical Reaction therefore submitted a report on the situation to the DAT's executive officer, with a request that action be taken on the matter.

In considering practical solutions to the problem of the availability of clean needles Chemical Reaction discussed the practice adopted by some user group's whereby they provided clean works when required. In the end Chemical Reaction decided that to become suppliers of needles and syringes would be moving too far from its' primary function towards becoming service providers and that this was not the which road the group wanted to go down. The group consider that drug services should be provided by agencies set up for that particular function, whether statutory or voluntary, and not by drug user groups. That is not to say, however, that drug users (both current and former) have no place in providing services but that such functions must be distinct from user involvement per se.

Having been in existence for around three years, Chemical Reaction gets regular requests to speak to drug users considering organising themselves into some sort of drug user group. Perhaps the best example of this sort of networking and support work Chemical Reaction was involved in was when they visited a group of drug users called LACE (Local Addicts Community Endeavour) in Dumfries. LACE had been concentrating much of its energy in trying to secure premises for meetings etc without having much success. LACE believed that being established in its own premises was the only way it would be legitimised or accepted as a serious minded group of people.

LACE had originally contacted Chemical Reaction to enquire whether they had a constitution which they could use as a starting point or a framework for their group to use. Two members of Chemical Reaction went to Dumfries to discuss with LACE how Chemical Reaction organised itself and worked - and following that discussion LACE concluded that it was not necessary to direct its energy into gaining public recognition but that they could follow the Chemical Reaction lead and 'just do the business'.

This article would not be complete without commenting on why Chemical Reaction has developed to where it is today, and gained the credibility it undoubtedly has. The answers to this are quite simple. Firstly, most of the members live in the Greater Craigmillar area of Edinburgh and as such have everyday contact with the wider drug using community - they know when new trends arise in the area. Secondly, they listen to what drug users are saying and often they are in a position to explain to drug users the rationale behind decisions and practices. Thirdly, it is at present a small core group. As stated above, this enables it to respond quite quickly to issues that affect drug users. Chemical Reaction is at present working on recruiting new members and establishing more formal ways of consulting with the wider drug using community. It is hoped that a proposed safer drug use handbook will provide the vehicle for this to happen.

Greg McFarlane is the Lothian User Involvement Project's development worker.