POLICY AND PRACTICE PROPOSALS ON USER PARTICIPATION IN DECISION MAKING IN MENTAL HEALTH
(This is the consultation paper that led to the briefer policy statement on User Participation which was approved by UK Federation members at the 1999 AGM)
CONTENTS click highlights below to move to section
1. POLICY STATEMENT
2. GENERAL GUIDELINES FOR GOOD PRACTICE
3. PLANNING AND REVIEWING OWN CARE
4. RUNNING AND MONITORING SERVICES
5. PLANNING AND DEVELOPING SERVICES
The UK Federation of Smaller Mental Health Agencies believes that service users, and organised groups of users, should have the opportunity to participate in all aspects of the planning, delivery and evaluation of mental health services, including their own treatment and care.
For such participation to be meaningful, service users need confidence, good information, practical support, appropriate preparation and training and clear feedback i.e. a fully informed response to their contributions.
Those planning and running services should recognise that users are likely to be disadvantaged in all these aspects compared with professionals and should aim to redress the imbalance by promoting positive attitudes, allocating resources and giving priority to the comfort and convenience of user representatives.
In respect of collective issues, there may not be one 'user view'. Service users, when acting as representatives, have a responsibility to seek out and give voice to the views of other members of their group. Those planning and running services should ensure that as wide a range of opinions as possible is sought and that user representatives are recruited from all sections of the community. The participation of users with language or other special needs should be facilitated.
Some users will want little or no involvement and it should be clear that this will not lead to criticism or any withdrawal of care or support.
The UK Federation believes that information and decision-making opportunities should be available to both individual users and to user groups and organisations at local and national level. These guidelines, therefore, cover a range of situations in which service users may be involved, including the planning and review of their own care, the day to day running and monitoring of services and longer term planning and service development. It is hoped that members will find them useful both when negotiating agreements with others e.g. professionals, managers and planners in the statutory services and also when drawing up models of practice for their own organisations.
The aim has been to draw up as comprehensive a list as possible, from which people can select what is applicable to their own circumstances or the circumstances in their area. However, a number of basic points apply in all situations:-
2.1 Users should be treated with respect and their experience regarded as valid. For example, compulsory admission, even if necessary, is still likely to be experienced as traumatic by the user.
2.2 Information should be shared as fully and openly as possible. Verbal explanations should be backed up by written information, which people can look at in their own time.
2.3 Practical and moral support should be provided as appropriate; for example, transport and advocacy.
2.4 Language used should be clear and free of jargon.
2.5 Cultural needs and other special needs should be considered.
2.6 Sufficient time should be allowed.
2.7 Specific funding should be allocated.
This is an on-going process, including crises, time spent in hospital, planning for discharge and regular review of services provided in the community.
3.1 Users should have the opportunity, when their situation is stable, to express and record any wishes and preferences they have about what should happen in a crisis. They should be given information about crisis cards and about possible alternatives to hospital.
3.2 Staff should always introduce themselves and explain their roles and responsibilities. This is crucial in the case of the keyworker.
3.3 Users should be able to choose the sex of their named nurse or keyworker and request a change of keyworker, if they wish.
3.4 Users should have the option of being accompanied by a friend, relative or advocate at significant meetings or discussions. The services of an interpreter or signer should be available, if necessary.
3.5 Users should be given prompt and clear information about their legal rights and about how to obtain legal advice.
3.6 Issues of confidentiality should be discussed. The user should be made aware of the extent to which information about them will be shared among the staff team. Their permission should generally be sought before this information is shared with other agencies or family members (except where a refusal to consent may be legally over-ruled). They should be asked if they wish an informal carer or staff member from another agency to be invited to meetings or reviews.
3.7 Clear information about policies should be readily available and procedures should be explained clearly in advance, including what is expected of the user, the ways in which they may influence what happens and any restrictions on their freedom of action.
3.8 Diagnoses and other terms used should be explained to the user and information provided about any proposed treatments, including risks, side effects and alternatives available. Enough time should be allowed for users to ask questions and to ensure that the information has been understood, so that they are able to give properly informed consent. If compulsory treatment is being considered, users should also be given information about their legal rights.
3.9 Care plans should be based on assessment of need, from the user's perspective e.g. "I get very lonely and have nothing to do all day", rather than routine referral to what professionals consider a suitable "next step" e.g. day centre. Users should then be given information about the range of services available to meet these needs, including welfare benefits and self-help groups, so that they are enabled to make their own choices. Information should include details of who will provide the service, what it will be like and what will be expected of them. Choices may include the time and place at which someone wishes to receive a service or treatment e.g. whether to receive injections at home from a CPN or to go to the GP's surgery.
3.10 Care plans should be legible, written in clear language, cover all aspects of care and be agreed and signed by the user.
3.11 Users should have ample opportunity to feed back information about their progress and comments about the treatment and services they are receiving, through contact with their keyworker and regular reviews. They should be given information about how to make complaints and an explanation, if possible with advance warning, of any change in the service which may occur e.g. due to staff shortage.
3.12 Meetings and reviews should be held at a time and place convenient to the user.
3.13 Users should have the opportunity of contributing to their records, though the right to see these may legally be withheld or limited. The number of different records should be kept to a minimum.
4.1 New users of a service should be welcomed and introduced to staff and other users. They should be shown around the premises, given information about any basic rules and daily routines and have an opportunity to ask questions. Written information to take away is especially helpful.
4.2 Information about policies, codes of conduct and activities should be clearly displayed or readily available.
4.3 Service users should be consulted about developments in policies and practice, especially in relation to codes of behaviour, resolving conflicts and making complaints. They should be given the chance to read and discuss relevant documents before any formal meeting, and the thinking behind proposed changes should be explained.
4.4 Service users should have a regular opportunity to meet together, independently of staff, to discuss issues of interest or concern. Facilities should be made available and meetings should be facilitated or supported by an advocate, if necessary.
4.5 Clear channels of communication should be agreed between users and staff, to enable information about views, issues and plans to be exchanged.
4.6 Ways should be explored in which users can participate in planning and running both the everyday activities of the unit and special occasions, if they wish e.g. planning menus and preparing meals, welcoming new users and visitors and showing them around, sharing skills and experience.
4.7 Ways should be explored in which users can influence and take part in developing the Environment of the unit e.g. choosing decorations and furniture, creating a garden. This is especially important if they are using a service on a long-term basis or if it is their home.
4.8 Users should be involved in the appointment, training and induction of staff. While some people may have expertise in this area, others may need appropriate training and support to develop the necessary skills.
4.9 Users should be involved in the monitoring/evaluation of services. This could be through informal feedback by individuals or the group or through more structured methods e.g. questionnaires and focus groups. If monitoring is to be user-led, users may again need training and support.
4.10 Users should generally be consulted before visitors are invited to or shown around a unit.
5.1 Work at this level includes both the regular review and development of policies and services and new work on particular projects/areas. Users may contribute to either aspect. Their participation is more likely to be effective if systems which ensure that their views are heard are already in place at other levels, as described above.
5.2 Not all users wish to take part in meetings. A variety of ways should be developed of seeking users' views e.g. questionnaires, visits to groups, one to one interviews. A particular effort should be made to contact people who might be overlooked such as minority ethnic groups, users with other special needs or mentally ill offenders. The help of relevant professionals or community leaders may need to be enlisted.
5.3 Timetables need to be carefully planned, so that people have time to consider issues and consult with others. This may need to be negotiated with user representatives at the beginning of a project. Professionals should remember that users will not be working five days a week on planning issues and that it may be difficult to find enough people willing to be involved, if there are too many consultations going on at once!
5.4 Meetings should be held at convenient times and at accessible venues. Service users may have work or other commitments. Help with transport and signing, interpreting and advocacy should be provided as necessary.
5.5 Meetings should be as friendly and informal as possible. The balance of people attending should be considered, so that users do not feel swamped by professionals. Some users may be used to committees, others will not be. If necessary, people should be briefed about the procedures and language likely to be used. Agendas should not be too long and breaks should be taken. Some meetings may be user-led.
5.6 Documents should be circulated in good time and background information provided. If necessary a contact should be nominated to brief users and/or a briefing meeting should be held beforehand.
5.7 Users should be involved as early as possible, with brainstorming sessions and with drawing up plans, rather than just being consulted after the main work has been done. Users should be able to put their own items on to the agenda.
5.8 Users should be given honest and realistic information about such factors as what is and is not negotiable in any situation, who else is being consulted and how any final decision will be made.
5.9 Time and effort should go into ensuring that everyone has understood each other, so that misunderstandings are sorted out and views not overlooked.
5.10 Users need to be clear whether they are present in an individual capacity or as representatives and individual opinions should be distinguished from a majority group view. However, professionals should be careful not to undermine a user by claiming that he or she is 'not typical'.
5.11 Feedback should be clear and honest and include information about how decisions were taken and why particular views were accepted or rejected and actions taken or not taken.
5.12 Expenses should be paid promptly and fees offered where appropriate. It might be necessary to discuss with the user what level of payment would be acceptable, bearing in mind the need not to jeopardise benefit payments.
5.13 It might be necessary to allocate extra staff time to facilitate user participation and/or to train staff to work alongside users. Funding a 'user-liaison' post could be considered.