4.6.1 Background
The NHS and Social Care Act 2001 demands that every NHS body, including drug treatment services, now has a statutory duty to consult and involve patients and the public in its activities. The duty to involve and consult commenced on 1 January 2003. The Department of Health is providing guidance on how this can be done via a new system of patient and public involvement. Drug service users and their carers can also take advantage of these new opportunities.
Inevery NHS trustthere will be a Patient Advice and Liaison Service (PALS) to
provide on-the-spot help and information to patients about the trust’s services, including complaints procedures, and advice about local voluntary and self-help groups. PALS will be part of each trust. Patients’ forums will be set up as independent statutory groups to monitor and review services and to influence the day-to-day management of the trust’s health services and monitor the work of each PALS.
In every community, local networks will be set up to provide advice and information to local people and to enable them to get involved in their healthcare services. They will do this through local outreach teams which will also support the work of PALS and patient forums by bringing them together to share information and lessons that they have learned. Local people will be able to join a panel to ensure that the outreach teams are concentrating on issues of real local concern. Local Overview and Scrutiny Committees will be set up to inspect regional NHS services. Local networks will also employ the services of the Independent Complaints Advocacy Services (ICAS) to support people wishing to complain about their healthcare. Local networks will be monitored and supported by the national Commission for Patient and Public Involvement in Health (see below).
At national level, the Commission for Patient and Public Involvement in Health will be an independent organisation that collects, compares and promotes information picked up by its local networks, and by PALS and patient forums. It will carry out research, set national quality standards for patient and public involvement, develop and provide training to ensure that local volunteers and representatives are able to meet these standards, and monitor PALS, patients’ forums and ICAS.
The Department of Health is also changing how people can complain about the NHS. A listening exercise was conducted in September 2001. The feedback obtained was used to construct a final package of measures and a timetable for implementation. This is available on the Department of Health website: www.doh.gov.uk/involvingpatients.
4.6.2 The NTA’s user and carer involvement
The NTA wishes to advocate partnerships with drug treatment service users and carers, because we recognise that users have the right to become involved in activities that affect their health and well-being. We also respect the unique expertise and
experiences of drug users and carers and know the health, esteem and other personal benefits which involvement can bring.
The NTA will work with drug users, drug treatment services, joint commissioners of drug treatment services and local drug action teams (DATs) to develop a national strategy for involving users and carers. The NTA’s user and carer involvement strategy aims to:
• make agencies that provide drug treatment services more accountable to service users and carers
• create more opportunities forpeople who use, or want to use, drug treatment services to get involved. We are particularly concerned about people whose needs are under-represented by existing services, such as women and black and Asian users
• enable service users to complain about services. We will make the system easier to follow and make sure that it is well advertised. We will also make sure that the general NHS complaints procedures are open to drug treatment service users
• seek to ensure that specialist drug treatment services are independently monitored
• be flexible and be based on what works.
Existing standards on involving service users and carers in the commissioning and provision of drug treatment are set out below.
• Service users should be involved in the planning of local drug treatments services (Substance Misuse Advisory Service 1999).
• Drug treatment service users (as with any health and social care service user group) should be regularly consulted on their satisfaction with the treatment provided and should be actively involved in their own care (Alcohol Concern and Standing Conference on Drug Abuse 1999; Standing Conference on Drug Abuse 1997b; Department of Health 1991).
• As a matter of good practice, service users should be made aware of complaints’ procedures and local advocacy and support services (Standing Conference on Drug Abuse 1997b).
• A service users charter of rights and responsibilities is built into QuADS standards for drug and alcohol treatment providers. Drug treatment commissioners and providers should ensure that these standards are met (see Box 2 below).
The NTA, in partnership with users, carers, service providers and commissioners, and other parties, will build on this existing good work and provide guidance and
implementation to enable the construction of a more patient-centred drug treatment system in line with the NHS Plan.
4.6.2.1 Self-help networks
There are a variety of self-help networks in England. These groups have a variety of purposes, aims and philosophical backgrounds and vary from abstinence-based support networks to advocacy to harm reduction peer interventions.
There is an emerging evidence base from the USA that the regular use of self-help groups (in particular NA) can be beneficial to client outcome from drug treatment. Fiorentine and Hillhouse (Fiorentine 1997; Fiorentine and Hillhouse 2000) have found that attendance at mutual aid groups can improve and sustain outcomes from
compatible forms of drug treatment.
4.6.3 Types of help
4.6.3.1 Advocacy
Some groups, such as the Methadone Alliance, advocate for better methadone
treatment and provide service-user support networks. A national network of drug users’ support groups now exists. It can be contacted through the National Drug Users
Development Agency.
User-focused magazines such as Monkey and Black Poppy offer another source of information and support for drug users and their families.
4.6.3.2 Safer use
Some agencies (such as Mainliners) play an active role in harm reduction work,
including: peer education in safer drug use and safer sexual behaviour; first aid training in the event of overdose; provision of drug-related advice and information; and service user advocacy.
4.6.3.3 Self-help groups
The largest of these self-help groups for drug users is the fellowship of Narcotics Anonymous (NA). NA is a worldwide self-help network for people trying to remain abstinent from illegal drugs. It is one of the 12-step fellowships borne out of Alcoholics Anonymous (AA). It has an abstinence-based philosophy and the 12 steps are used to instil a new attitude and develop a drug-free lifestyle. Members are encouraged to attend support groups regularly for ongoing support and prevent relapse. In 1997, NA estimated that their London membership alone was 3,000, with about 20 meetings each day in the capital (Standing Conference on Drug Abuse 1997b). Mentors work with other members to support them and help them understand the 12 steps. Many drug services have active links with NA and encourage service users to link with local groups. Some drug services host NA meetings.
Another 12-step, fellowship-based, self-help group is Cocaine Anonymous, although the number of these meetings is much smaller than NA. Some parts of England may not have NA meetings available and many drug users have found attendance at AA meetings, which are much more widely available, a very supportive source of help. 4.6.3.4 Carer and family support
The needs of carers and families must also be considered in line with the Carer
(Recognition & Services) Act, 1995. Carers have to cope with a number of problems in supporting drug users in their families (Velleman et al. 1993). Primary care staff can provide effective help to carers (Copello et al. 2000).
ADFAM is a national charity set up to support the families and friends of drug users. It provides a range of services including a telephone helpline, publications and training. Families’ Anonymous is a self-help network of group meetings offering support to families.
Box 2
SCODA Service users’ charter of rights and responsibilities
A drug service user has both rights and responsibilities. The service provider has an obligation to make each of these explicit to the service user.
A service user has the right to:
• assessment of individual need (within a specified number of working days)
• access to specialist services (within a maximum waiting time), and the right of immediate access on release from prison
• full information about treatment options and informed involvement in making decisions concerning treatment
• an individual care plan and participation in the writing and reviewing of that care plan
• respect for privacy, dignity and confidentiality, and an explanation of any (exceptional) circumstances in which information will be divulged to others
• referral for a second opinion, in consultation with a GP, when referred to a consultant
• a written statement of service user’s rights
• the development of service user agreements, specifying clearly the type of service to be delivered and the expected quality standards
• the development of advocacy
• an effective complaints system
• information about self-help groups and user advocacy groups. A service user’s responsibilities to the service provider include:
• observing “house” rules and behavioural rules, as defined by the service (e.g. not using alcohol or drugs on the premises, treating staff with dignity and respect, and observing equal opportunities and no smoking policies)
• specific responsibilities within the framework of a care plan or treatment contract (e.g. keeping appointment times and observing medication regimes).
References
Task Force to Review Services for Drug Misusers Report of an independent review of drug treatment services in England London: Department of Health 1996
Purchasing effective treatment and care for drug misusers: guidance for health authorities and social services departments London: Department of Health 1997
Enhancing Drug Services London: SCODA 1997
Getting drug users involved: good practice in local treatment and planning London: SCODA 1997