The quiet revolution
Manager Neutral Zone/District Drug Services West Berkshire Health Authority
Meanwhile in Reading, a quiet revolution is taking place - a drug treatment programme which aims to ‘normalise’ drug treatment into the remit of the general practitioner.
The provision of treatment for drug users in Britain has long been dominated by psychiatry as a discipline. The idea tha if you use drugs you are in need of psychiatric help and that the provision of such help is a ‘specialist’ task, has led to services being developed mainly within the ‘mental health’ field, although towards the end of the 70’s and into the 80’s there was a proliferation of multi-disciplinary drug teams. These teams usually involves medical, social welfare and sometimes judicial staff members, working towards a common goal for the client or patient.
The domination of psychiatry and the development of the multi-disciplinary team led to a separation of the workers involved from their professional teams - we took the social worker out of his/her team, the nurse out of the hospital or clinic and so on. We then created a new animal, the specialist drug team, usually based in the middle of town, or a specific housing estate, thus further distancing the drug user from main centres of treatment or help that would be available to them if they were not using drugs. This also allowed other medical and social welfare staff in these centres to abdicate their responsibility in relation to the drug user and even more firmly established the idea that dealing with drug users was a ‘special’ thing to do and that it required ‘special training’. It also scared off other workers who may have wanted to provide their service to drug users and validated those who did not. These developments served further to stereotype the drug user and marginalize his/her position within society.
Against this background WBHA decided, in 1987, to develop some services for drug users, determined to have a community perspective and to try and keep out of the ‘specialism’ trap. A small team of non-medics was set up to determine, in conjunction with local drug users, the services that were needed and the best method of service delivery. The conclusions drawn from the consultation were that the provision of services, in particular treatment services, had to be easily accessible, capable of fast response, locally based, flexible, fair but not punitive, holistic and, above all, not part of a specialist medical set up.
Drug users felt that they had been labelled enough as a group, and did not want to have the additional label of ‘mental illness’, they did not want to have to travel out of the Reading area, go to London to receive the treatment they wanted, and they did not want to have to jump through the same hoops that the established clinic system had made them jump through in the past. In short, they wanted to have access to realistic services locally, to enable them to try and live a normal existence and return to be a useful member of society.
And so - the GP Programme was born
It was decided to employ an experienced trainer, Bill Nelles, to help devise the programme. It was a time limited post, designed to leave the Health Authority with a programme which could, with the minimum of intervention, be sustained autonomously.
We decided that the programme had to take place in the community, provide quality treatment and not be dependent on the notion of medical expertise. Firstly, a survey was conducted very informally amongst the GPs in the West Berkshire Health Authority area. This covers both urban and rural areas with a population of almost one million. From the survey we were able to gauge the profile in medical terms, of the issue of drug treatment, gained information as to how GPs perceived their role in relation to the provision of treatment, and what were the barriers that prevented them from providing treatment. We found then and subsequently that the GPs surveyed fell roughly into three categories:
1) those who did not want to know at all (a section of whom were quite rude in their reply in the survey form);
2) those who would not provide treatment, but who could be swayed with the right package); and
3) those who were keen to become involved, a small section of whom were already providing some service for the drug user who was on their patient list.
It became clear that the problems could be split into:
attitudes and prejudices resulting in fear
practical skills/working knowledge
lack of confidence
It was decided to concentrate on groups two and three, and establish with that group a baseline of knowledge and skill in the district. Many GPs, even in groups two and three, were unsure about providing treatment for a number of reasons:
"I need to have a licence"
"If I take one person on to my list, I’ll be inundated"
"They are a nuisance"
"They will drive away my other (nice) patients"
"They will upset my other staff "
"They are violent"
"My surgery will be broken into"
"My family will be placed in danger"
"My partners won’t allow me"
"I’ll be attacked"
"I’m worried about the risk of HlV"
were some of the responses noted.
We embarked on a multi-faceted strategy to try and counter some of these very real fears within the group of GPs:
a) a PR/press strategy to try and reverse some of the damage that the media had done over the years;
b) an awareness/training programme with the GPs;
c) an awareness/responsibility programme with the potential patient/client group; and
d) an awareness programme within the Health Authority itself to promote the programme and improve staff morale around this issue.
These were all to run concurrently to enable us to achieve the most widespread positive changes of attitude across the public, GPs, drug users and Health Authority workers alike, and to draw people together into a closer understanding of issues relating to drugs. We decided to try and establish a continuum of care so that any drug user had equal access to the services provided as other people, and that the services were as comprehensive as we could manage within the prevailing economic climate. This framework would initially provide a range of services that the drug user could interface with, and join the continuum at the point that was needed and work up and down the line as he/she progressed or otherwise. We could also see that different elements of the continuum need not be provided by the same person, group of people, or organisation. A development strategy was initiated. It was planned to get the initial programme up and running within nine months and then phase its development over the next two years, although with the benefit of hindsight it is now seen that the programme will continually be in a process of evolution, as trends change. Two, two-day training events were organised. These covered awareness, pharmacology, casework management, problem solving, risk-taking, the need for a holistic approach taking into account the social and environmental factors which shape the way drug users function within society. The Health Authority took every opportunity to be involved with the media, to try and present a different picture of drug users, and establish their right to health care, just like anyone else. Drug users were extensively involved in the presentation of a different image of the user, as articulate, socially aware, intelligent and non-threatening (to Joe Public).
Contributions were made in training for nurses, doctors and trainee doctors, as well as in-house training for other members of staff in the Health Authority. Co-operation was established with the local Drugs Squad of the police; specially targeted was the branch of the squad which dealt with 'controlled drugs' and the local pharmacies' access to and security of drugs. Pharmacies were sought out which would change prescriptions for drugs co-operatively, without creating difficulties for the customer.
Work was also carried out with the drug users themselves, after all, before this there were NO services for drug users and their families. Responsibility lay with the user of the service not to behave in the way that would normally be expected, ie, to lie, manipulate and be unreliable in a host of ways. Honesty an mutual trust/respect would need to be forged, if the new approach was to work. This created some difficulties for the users (and still does) as, for many, it requires a complete rethink about the way they interact with professionals. They had responsibility not only for themselves but for all the others who were currently in the programme and all those who would need the services in the future. There was also the difficulty of greed, as scarcity of service had been the norm. There was a danger that everyone would want it all, instead of being happy with a slice (of the cake); this meant that a learning process had to take place amongst the drug users themselves.
The programme today
Two years on, the programme is now fairly well established and fulfils its role in the continuum. It has taken a substantial level of investment (in terms of funding to drug services in Britain) by the Health Authority to get the programme up and running. The Health Authority has set up a small HIV prevention unit, incorporating their provision of drug services, which includes a sessional GP to support the programme. Both sets of services work out of the same building and come under the same manager, although conceptually the two halves are quite separate. The programme works roughly like this: anyone can gain access to the service either by being referred by other professionals, family or friends, or by walking through the door or phoning the Unit directly; from there, that person will be seen within two days, but usually the same day; an assessment will be carried out informally, where a rough proposal, in terms of dosage and timescales, is drawn up. The client has the biggest say in the determination of his/her treatment, including dosages, urine samples which may be taken, and/or medical check if it is felt to be necessary. It is at this stage that the importance of negotiation becomes apparent. For the programme to work, the client has to break out of the usual ‘ask for a large amount in the hope that you will get lucky and get half’ syndrome. He/she has to understand that for his/her treatment to be successful, it has to be built on a basis of honesty and mutual trust, both with the staff in the Unit and the GP, and that he/she has responsibility within the programme (as described earlier). If the client has been referred by a GP for assessment, the GP will then be contacted, usually by phone, and the second negotiation takes place. Once the broad outline of the treatment and starting dosages have been agreed, the client will be sent back to the GP for the execution of the treatment, usually either the same day or the next day. So the usual time from the initial phone call or visit to the start of the treatment is 72 hours maximum (usually less). If the client has come to the Unit as self- referred, then the same assessment and negotiation takes place, but then, depending on where the client lives (every GP surgery has a geographical catchment area), a GP (from group two or three) would be contacted in the area on the client’s behalf, and follow the process through as above. The threefold purpose of the contract (whixh is a local agreement with no legal standing) is that the GP will undertake to look after the client’s healthcare. The Unit undertakes to provide the necessary social backup, including a programme of counselling, provision of information, provision of equipment and so on. The client undertakes to attend appointments and abide by the conditions as negotiated with the GP of the Unit; these tend to be behavioural and are mainly to satisfy the other members of staff in the surgery. No written material is given to the GP, unless the client has seen it and agreed that it can be released. If there is any section that the client is not happy with, then it will be rewritten. Rewrites rarely happen. I know that it may sound like heresy to some to allow clients to make decisions about their healthcare, particulary dosages of an opioid, but as explained earlier, the decision is arrived at by the process of negotiation. This does not mean that the staff involved enter into the process with a hidden agenda; every treatment programme is devised to suit the individual, and is unique to that individual. Within the group of GPs in the district, some have developed areas of interest, specific to drug use; some prefer long term detoxes; one GP has organised his caseload in such a way that he is able to have a small clinic within his surgery on a specific day, another (female) likes to become involved in pregnancy and childcare issues. Prescribing injectable drugs features in the programme as does long term stabilisation. It is often unrealistic to expect someone who is used to injecting drugs to give it up immediately; many opt to swap their ampoules for an oral form of the drug over an agreed period of time. It defeats the object of treatment and HIV prevention, if the treatment programme in operation is not realistic, and the client is either using more oral drugs on top, or even worse, injecting street drugs on top. Detoxification by reducing the dose of the opioid is never forced on the client, punitively or otherwise (‘you really should be reducing, it would look better for our statistics, and it’s in the guidelines", loosely translated means "I think you would be better off if you did this, and I would feel better too’). We believe that the client’s healthcare needs are the important ones. Clients, GPs and the staff at the Unit are encouraged to be truthful, to try and avoid these scenarios, which are the expected norm in drug treatment programmes and which further characterise the stereotypical drug user. The programmes are flexible, which is necessary as an individual’s circumstances change, as happens in any other form of treatment. There is an informal understanding that to prevent any one GP being overloaded and inundated, GPs restrict the amount of treatment slots in their caseload to four. As a group, clients are moving through the system and becoming drug free. Their treatment slot will then become available to someone else, although to date we have never had to hold a waiting list. This allows the workload to be spread throughout the district, instead of focusing on two or three GPs, (and adding to the specialism trap), unless a GP specifically decides to take extra clients where the same level of support and input will be offered.
Many GPs worry that the clients will not be able to manage to split their weekly doses into daily doses and stick to it, or that they will sell their prescribed drugs. In Britain, also available to GPs, is an alternative type of prescription pad, (blue FP10), which allows the GP to split up the weekly doses which can only be picked up from the pharmacist on a daily basis (Sunday’s is picked up on a Saturday). The prescription can also be written to allow a pick-up twice or three times a week. Using these prescription pads can restrict the amount in possession at any one time: this can also help to cut out some of the doubt that a GP might have. Some clients actually prefer to use the daily pick-up mechanism, although it is used on the basis that it will be phased out, but could be reintroduced when necessary. If clients go off the rails, which some do from time to time, the programme does not prescribe punishment, as most do. Provision of treatment, in whatever form, and the prescribing of opioids will not be taken away from the client. However a contract review will be initiated between the three parties involved in the contract. The mechanism of the daily pick-up may be invoked for a while, and the privilege of a weekly pickup earned by weekly attendance at the Unit, or some such agreement, but never a cessation of treatment. If a client is in employment the provision of treatment should not jeopardise their remaining in employment, i.e. having to ask for time off once a week to attend surgery. Most surgeries do open in the evening and/or on a Saturday morning and so appointments are made at those times for them. The staff at the Unit also work in the evenings, so that treatment does not equal unemployment. If surgeries’ appointments are not available, then other arrangements can be made. Although GPs are in charge of their own caseloads, and ultimately have the power of the pen (in writing the prescription), and can manage their cases as they wish, the prescribing of the substitute drug is usually done with the advice of the Unit, which cannot demand of the GP that he/she treat the client in the way that we advise. This is where the notion of a working partnership has come into its own - shared overall responsibility, (the GP retains clinical responsibility) towards a common goal. As clients progress, they may decide that they want to detoxify from their drug use, prescribed or otherwise. We do have access to hospital beds and so can offer rapid naltrexone (in the case of opiates or opioids) detoxes, both inpatient and out-patient, or a gradual reduction of the prescribed substitute. We are also shortly introducing alternative therapies for those who want to get back in touch with their bodies and manage their anxiety or stress. Massage, reflexology and aromatherapy are just some of the complementary therapies which can be be developed to add to the services that the programme already provides.
Currently, there are over 70 drug users in the programme and 88 active prescriptions in the district overall. The discrepancy in the figures is due to some users going to private clinics in London, but changing their prescriptions in the district, and some users who were already receiving a service from their GP before the programme started and opted not to join. It is far too early to make judgements as to the success of the programme. It will take some years to measure the impact of the programme and its effectiveness. We are currently trying to secure funds to allow us to research the effectiveness of the programme and its impact on the community, so here is some unsubstantiated and anecdotal evidence of the progress to date:
• There have been no pharmacy breakins since 1987 when the programme started. Previous to 1987, counted as one per month average.
• A substantial reduction of drug-related crime by the group in the programme, therefore less time and money spent by the police, lawyers, courts, probation and the prison service.
• As primary health problems are picked up and dealt with at an early stage, there is less time and money spent by the acute unit, ie, the hospitals.
• A return to work by 63 per cent participating in the programme.
• Twenty-five per cent who are maintained in the programme request detox within 24 months.
• Fifteen per cent achieved drug free status (working through the continuum).
• General improvement of attitudes towards drug users who have to go into hospital for any reason.
• A continuation of treatment while in hospital for reasons other than detox, (unless to continue treatment was medically unwise - reaction with other drugs).
• A marked improvement in general health of the group.
• A marked improvement in concern relating to individual health.
• A marked decline in the numbers of new entrants to the programme under the age of 26 years.
• Reading is an average size town and most of the opiate users have tended to be in the older age range, late 20s and 30s. Most of the users have now entered the programme, therefore the market in heroin and other opiates/opioids has collapsed. As there is no market, there is no-one dealing, ie, sitting with a heap of powders and scales, therefore no new local users. There will always be the odd person, travelling further afield to pick up opiates for himself/herself and/or friends, (but no dealers in Reading), and it is only a matter of time before he/she requests assistance.
• Drug users from other parts of Britain (where no or lirde treatment is available), move to Reading to try and gain entry to the programme. This can create some difficulties as local drug users get priority, but if the person actually moves into the West Berkshire Health Authority area, he/she is entitled to health care just like anyone else.
• The local media actively seek out the informed view of the drug user, and promote harm reduction positively.
• There has never been any public outcry/outrage or act of recrimination by the public, over any programme the Health Authority has developed in relation to drugs.
• No acts of violence towards GPs or staff members in the Unit.
• New GPs joining the programme with enthusiasm and ideas.
We are aware that throughout Britain GPs have been (and are) prescribing, although we understand this is generally by individual effort and interest, rather than by a formal, organised and integrated approach involving partnerships with local health services. If there are any programmes broadly similar to the above, we would be interested to hear about them.
The General Practitioner’s view
Fifteen years of working in an urban general practice, in a town with no organized services for the drug user, had given me the image of a typical user as a violent, dirty, deceitful commuter between London and Reading, buying or stealing a mixture of drugs of variable quality and quantity, and often with serious underlying physical problems which were difficult to treat - the patient often leaving the practice list and moving on elsewhere before any useful medical input could be achieved.
Some four years on, following the establishment of the West Berkshire Health Authority programme, the same drug users appear, in retrospect, as deprived refugees, aimlessly seeking the unattainable. General practitioners had been unwilling to bend from pre-ordained behaviour patterns to accommodate the misfit drug user who had responded with anger, raided the local pharmacy, or paid over the odds for adulterated, illicit supplies. The doctor’s refusal to reach a compromise was destructive of his patients well being.
And what have the last four years achieved? Looking at my current registered patients, I see precisely that - patients not addicts. The presence of a support service locally has allowed the GPs in the area to take on small individual caseloads of drug users. No single doctor fears being overwhelmed by the numbers when the grapevine indentifies him as sympathetic. By definition, ours may be a sympathetic town, but a policy of treating residents rather than migrants from other towns is also grapevine news, and has prevented the service from being swamped.
With a defined population to serve, as a result of this policy, it is possible to encourage the GP to view his few additional patients as individuals with problems, and not as an impossible workload. The corollary is that the patient sees the GP as a doctor who cares, and not just a supplier of drugs. The written contract, established soon after the first doctor/patient contact, establishes the change in two-way attitudes as fact. Patient and GP both know where they stand. The doctor will treat the users like any other human beings, will provide the medication they need, and show due concern for their health care needs, knowing that in return the patients will do their best to keep the precious appointments, and to behave in an acceptable fashion to the receptionist (who is already surprised that she can not pick out the addicts by their appearance or smell). They no longer offend the other patients in the waiting room. No longer needing to steal or to buy drugs, the users will be able to afford decent clothes, a bath, and even a roof over their head. Maybe they will even get a job. There are not just hopes, but real achievements for many local addicts. The regularity of supply has saved the ups and downs of their previous existence. Contact with the general practice team (and that includes the telephonist, the receptionist, the doctor, the nurse and so on) the regular pharmacist and the WBHA team has given human contact with a friendly authority, to replace the threatening and condemning attitudes of the police, prison officers and even the person in the street which had previously been the norm.
There has been a quiet revolution. Acceptance by the Health Authority of our inability to stop (or ignore) the drugs problem has put in place a structure which has permitted the GP to change old established attitudes. This in turn allowed a degree of social stabilisation for the patient user which was undreamed of when I began in general practice in the early 1970’s. I hope and believe we may at last be on the right road.
D A Churchill M.B. B.S.
The customer’s view
For many years, treatment for drug users was non-existent in the West Berkshire area. This left all of us who use drugs in a very difficult position. I was forced to resort to the time honoured ploys of conning GP’s to get whatever I could, forging prescriptions, breaking into chemists shops, dealing to support my own habit, stealing/shoplifting to raise money to buy illegal drugs and spending money which should have been spent on other things on drugs.
Her Majesty requested my attendance at her residential penal dustbins on numerous occasions, all for drug-related offences. Even in prison, I continued to maintain my drug use. This became a vicious cycle with no hope of breaking out, which led to the breakdown of all family life.
I had in the past been through the Clinic system which was available at the time, and had completed several enforced detoxifications, none of which were successful. I also went to the private sector, which gave me my first taste of capitalism and helped me to develop my entrepreneurial skills on the street.
As my health deteriorated and my tolerance increased, I came to the conclusion that I could no longer fit prison into my social calendar.
Fortunately, I was living in Reading at the time, and was able to participate in the embryo GP programme. It was a challenge.
From day one, I was involved in all the decision making about my treatment - I was even asked what dosage I needed. At first I played "the clinic game", by asking for double the amount I needed, in the hope that I would get half, i.e. what I needed in the first place. It became apparent then that this game was redundant, and I would have to approach this new programme with a different attitude.
At last, a realistic treatment plam, which provided for all my health care and where the goal of abstinence was not a pre-condition.
This may not seem a lot to most ‘drug professionals’, as I have not become abstinent, but I have been able to make these changes whilst being maintained by my GP. My attitudes towards my GP in particular, have changed. He is no longer the person to con, but a professional who does care about what happens to me. This makes me more optimistic about a detox in the future, when I feel that the time is right.
For many years it was a constant struggle for me to survive. Now my drug use is not a problem for me and my lifestyle is no longer drug orientated. Maybe I’ll go for a holiday.