SERVICE “USER” INVOLVEMENT
“Developing A better Mental Health Service through new collaborative working methods is at the heart of the government’s commitment to the National Health Service in Scotland(NHSiS). The involvement of the service “Users” as partners in the development of Mental Health service provision is integral to this”
The Benefits of Service “User” involvement
The benefits of “User” involvement in Mental Health Service Provision are wide ranging, and of considerable significance both to NHS staff and to patients and the public.
SERVICE “USER” INVOLVEMENT
In Mental Health Service Provision
John Quick
2/27/2008
A Discussion paper (taken from a varity of sources in the public domain)
“Developing A better Mental Health Service through new collaborative working methods is at the heart of the government’s commitment to the National Health Service in Scotland(NHSiS). The involvement of the service “Users” as partners in the development of Mental Health service provision is integral to this”
The Benefits of “User” involvement
The benefits of “User” involvement in Mental Health Service Provision are wide ranging, and of considerable significance both to NHS staff and to patients and the public.
•Responsive services are more likely to be appropriate and effective.
•Mechanisms which increase or promote dialogue between service providers and service users encourage a greater accountability and openness on the part of the service provider
•Professionals gain confidence from knowing that services have taken account of the views of service users, and those users feel more positive about a service which they feel they have some influence over.
•service“User” involvement can be one way of challenging the traditional or accepted view of what is important in health services, and can be an agent for change. It can also support and facilitate change.
•Involving Service “Users” in decisions about the planning and delivery of services is one of the most effective ways of identifying and addressing inequalities.
•When Service “Users” are encouraged to participate in decision making, they have a clearer sense of local ownership and commitment to health services.
Building a successful partnership with the Service “user” will involve :
communication, which is about engaging in a meaningful dialogue with service users; consultation, where service users are asked for their views; and partnership, where service users and carers work as equals with professionals.
Working with the Service “User” may mean a whole range of different
activities and levels of involvement.
Information giving: publishing information on the existing services and structures of decision making, for example, information sheets, service directories And most important of all, regular meetings with service users.
Gathering information: getting Service “Users” views on existing services and listening to their views on their wider health needs and concerns, for example, surveys, focus groups or attending community meetings.
Consultation: asking people to comment on a particular plan or proposal, for example, a hospital trust application or the plans for developing a hospital-based service into community-based premises.
Involvement in policy development and decision making: getting “User” involvement directly within the management of the organisation, for example, a user panel set up to develop training and quality standards for professional staff, user representatives on service committees.
Joint working: working with “users” on an equal basis to develop joint projects or new forms of services, for example, designing a new mental health information pack, a local health forum initiating a community health project.
“User” control: the service provides a grant or enters a service agreement with a user organisation to develop their own initiative, for example, a grant is given to local “users” to set up a helpline.
Service users have direct experience of service provision which provides a unique and often essential input into the process of planning and monitoring of services. Service “users” must be viewed as Citizens and have an interest in the ways in which public money is spent and the pattern of services which is potentially available to them and others. Carers and families bring their own perspectives and concerns It is important to be clear about who the participants are in different settings, and why attempts are being made to involve them. People can be involved as individuals or as representatives of groups and, depending on the initiative,
Any “User” involvement exercise should be underpinned by the following values:
• Transparency
• Social inclusion
• Partnership
• An understanding of representative participation
Transparency
It is important that the aims of particular initiatives are clear and transparent to all those involved. The organisation should develop a clear policy and strategy for “User” involvement. The partners in any particular activity should understand the reason for their involvement, the scope of the exercise, the issues to be addressed, the decision making process and the subsequent use of outcomes. Social Inclusion Involvement initiatives should be inclusive.
This means taking account of the social and structural barriers which affect people’s ability to participate. These could include issues of physical access, for people with a physical disability, and resources may be needed to enable people who cannot afford transport or child care to take part. Information should be provided in clear and accessible language, in appropriate formats for a range of needs. Procedures should be designed to encourage involvement, and this may mean avoiding formal procedures. Events should be held in local or neutral venues.
Partnership
Work on developing healthier communities depends on working in partnership with others. Health service staff need to build relationships with other organisations in both the statutory and the voluntary sectors. There are many other bodies working on issues that affect Mental Health. For example, many local authority services have clear Mental health implications, and involve collaborative working. Community Planning Partnerships and Social Inclusion Partnerships have mental health components, Participative approaches are particularly important in areas of deprivation where the factors that impact on mental health are complex and wide ranging. It is important the primary care trusts support partnership working at all levels, and provide training where this is needed.
Representative participation
People as patients, carers, parents and citizens have a range of experiences and bring unique perspectives to the development of the mental health services. Many service providers express concern about whether participants are representative. While some participants can claim to be representative, others should be included simply because their experience is likely to be typical of that of other service users, carers or parents. Lay knowledge is a form of expertise in its own right. Concern that individuals and members of users groups are not representative is never a reason for denying involvement but may be a reason for reconsidering the purpose and process of involvement
Appropriate Methods and Support
Appropriate methods and support are key
They include:
• adequate resources and support
• the selection of appropriate methods
• time and timing
• action on the outcomes of involvement.
Adequate resources and support
service “User” involvement needs resources. Even the simplest consultation exercise involves staff and participant time and costs money and effort: time has to be allowed for in work and family schedules.
Service “Users”, their representatives or members of the public may need support to play an effective part. This might involve providing interpreters for people from ethnic minority groups, or advocates for those with learning difficulties. Where people are taking part in committees as lay representatives they need training and support. These concerns are also important to
remember when working with voluntary agencies. They may need support and funding to increase the level of public involvement. The support needs of health service staff who may be asked to develop new ways of working also have to be considered. the development of involvement as an integrated and ongoing part of the organisation means that the support, training and development of service “Users”, stakeholders and voluntary organisations should be part of the overall strategy and must be realistically resourced.
Appropriate methods
A wide range of approaches to “User” involvement exist. To be effective, initiatives which involve the “User” must be extremely clear about what their aims are. Methods must be chosen carefully to ensure their appropriateness, both to the aims and to the particular group of the public involved. Existing groups such as community health projects, local health councils or forums can be used and developed as facilitators of local involvement. But most importantly these must be user led to be effective.
Time and timing
Always try to involve the “User” as early as possible. Involving people in agenda setting increases transparency. Remember, when organising meetings and deadlines, that “Users” and voluntary organisations have lives and structures of their own. As representatives of other organisations, the participants may have to report back to committee structures, which may then have to refer to their membership before responding to the consultation. While
consultation may be slow, the breadth and quality of the consultation makes it worthwhile. Not allowing enough time for consultation can lead to poor feedback and complaints about inappropriate services. “User” organisations need to know the timescales of trust planning cycles to allow them to participate effectively.
The time of meetings can also be important. It should not be assumed that everyone can attend meetings during working hours, and school holidays are often times when involvement of the service “user” becomes difficult.
OutcomeIt is important to be clear about what the outcomes of the involvement will be. The results of the activity should be fed back to participants along with a description of action which has resulted from the work. Reinforcing participation through publicising developments in practice is very important. Conversely, failure to report back can create cynicism about the process. Even if no action is, or can, be taken, people should be kept informed. Service “User” Forums are also a major resource of patient and public involvement know-how - what works best, where and why. This is built upon their extensive local knowledge and networks with other community and patient groups.From their experience they know:
• that there is a requirement for high quality accessible information which presents a “joined up” picture of the NHS;
• effective “User” involvement must be an ongoing two way process which builds on existing successes and structures, is ongoing and sustainable;
• time and resources need to be safeguarded and directed to this function; and
• all agencies need to work collaboratively. service “User” involvement cannot be viewed as an add-on to existing work. It must be integral to the ethos of the organisation, built into the culture and responsive to both the “Users” needs and to those of the organisation. Examples of involvement already exist in different forms in the services If “User” involvement is to make a difference it has to be more than just a collection of projects and experiments. It has to be part of the core set of beliefs of the NHS, central to its mission statement and actions. a culture should be developed and sustained which is committed to “User” involvement throughout the organisation. A vision of effective involvement should be actively promoted, and this vision should be complemented by a recognition of the need for allocated resources in terms of staff time and budget to sustain and develop activity Whilst it is important that the strategic development of “User” involvement, this must be the core elements of the strategy, its principles and value.
This vision should be shared between the trusts, health board, local authority, the public and communities the way mental health services are provided locally, it is important that the vision of “user” involvement is promoted within all organisations and care providers. It will develop and evolve as the organisation and community become more skilled in involvement.
The following approaches can be used in developing a vision for “User” involvement:
• consultation documents circulated to service “user” organisations and community groups;
• briefing seminars for management and workers;
• seminars to explore new visions for mental health care;
• “User”-based vision workshops for both community groups and service providers;
• discussion of “User” involvement in local mass media;
• developmental workshops across agencies to explore the benefits of collaborative work;
• seminars synthesizing ongoing work already using this approach.
A Service “User” involvement policy should have:
• a statement of commitment;
• a broad definition of users;
• why users are being involved;
• how users will be involved; and
• principles which should govern user involvement, for example equal opportunities and principles of good practice.
• taking responsibility for developing “User” involvement across the organisation;
• organizing the development of consultations;
• coordinating the consultation process;
• organizing a communication and public relations strategy for the policy and carrying it out;
• educating participants about the aims and goals;
• developing pilot projects;
• responding to difficulties;
• evaluating initiatives
It should identify gaps and opportunities, as well as the scope for development at all levels.
Checklist for promoting effective user involvement
Does the organisation have a written strategy for “User” involvement?
Is there a budget for “User” involvement? Are there named, trained personnel with responsibility for “User” involvement and clear lines of accountability and responsibility for “User” involvement? Is the organisation committed to, and can it demonstrate evidence of:
• acting on the results and recommendations of “User” involvement initiatives?
• providing full and timely feedback to participants?
• explaining, when necessary, why recommendations could not be implemented?
Is “User” involvement an ongoing and integrated component of organisational
activity (rather than a series of occasional “one off” initiatives)?
Does the organisation maintain comprehensive, up to date lists of local user
representatives, user and community groups and organisations?
Does the organisation liaise with existing local resources (for example local
authority, local health councils, the Council for Voluntary Services, Citizen’s
Advice Bureau) to identify local groups and complementary projects to inform
the organisation’s own activities?
Do “ User” involvement initiatives within the organisation complement and inform
• each other?
• other relevant policy and decision-making activities at all levels?
Is training available for staff and involved users? (for example in the issues and principles “user” involvement; in “User” involvement methodologies, networking
and consultation skills?) Are user trainers involved in training health service professionals (for example to raise professional awareness of issues of key relevance to users and carers)?
If the answer is no to any of these questions well they must be addressed with all speed.
Position on Service “User” involvement, identify organisational arrangements for taking involvement forward, the levels at which it applies and identify who will be responsible for this. They should give clear guidance about expected actions and outcomes and show how this work fits into an overall plan. also explain to the “User” what it means for them. The fact that participation and involvement are a meaningful part of the organisation’s outlook will become clear as staff and community are trained and supported. The time, planning and support needed for this work must be made clear. “User” involvement work takes time to develop and achieve success. The work should not be jeopardised by failing to provide support or by demanding too much too early. There will be examples of involvement and participation happening within the health board area, and the support and development of this work should be seen as part of the broader development of activities A range of projects tackling inequalities in mental health in collaboration with the local authority will also be fruitful grounds for the development of good practice.
Monitoring, evaluation and feedback
All the systems, procedures and initiatives which develop need to be regularly monitored and reviewed with service users and members of the community. There is no single model for “User” involvement and therefore the types of evaluation and monitoring strategies will vary.
Monitoring
Monitoring in the context of “User” involvement is the on-going checking of progress. Information must be collected to provide a regular check on what is happening compared with the intention of the project or initiative. Monitoring is a value-free activity concerned with assessing what has happened over time.
Evaluation
Evaluation, on the other hand, is concerned with making an assessment of the processes and the outcomes of initiatives or projects. It judges the value of an activity according to criteria which are established at the start of the activity. The outcomes expected, and the methods of evaluating projects should be made clear at the start. The views of all the “user” and stakeholders should be taken account of in developing these criteria, and in carrying out the evaluation.
Feedback
It is important to be explicit about the results of the “user” involvement. This is not only a matter of courtesy to those who have invested time and effort in the process but also promotes the confidence and trust which is the basis of a sustainable relationship. Feedback can be achieved through newsletters, press releases, and regular reports to all those taking part. This process should be seen as an important part of the trust’s communication strategy, both internally with “Users” and members of the public. successful “User” involvement is not a series of stand-alone or one-offs, but an interlinked, ongoing body of work embracing many types of activity.
This is happening if:
• there is evidence of a continuum of different activities
• there is an overview of “user” involvement activity–a ‘big picture’ which spans a reasonable time frame be clear about what you want to get from “User” involvement and how its findings will be acted on.
This will happen if:
• its rationale is written down and understood
• there are clear statements on: time frame, outcomes and action
• feedback-points within the organisation are identified
• there is a clear articulation of limitations of policy and specific initiatives.
There is potential for “user” involvement at all levels of primary care from formulating primary care policy to addressing health inequalities, and a range of methods can be used. Involvement can, and should, happen at all levels
• providing support to general practice in delivering integrated mental health services;
• formulating Mental Health policy and directing future development of services;
• working with others to develop Mental Health Improvement Programmes, to implement local health strategies
• stimulating improvements in quality and standards of Mental Health care;
• addressing health inequalities;
Developing plans reflecting clinical priorities and specific health needs
There are many examples of the involvement of service users and carers in service planning and development, particularly in areas like mental health services. People with long term mental health conditions are a particularly important source of input into the planning of services, to develop an effective partnership between service providers to include lay involvement in needs assessment, service evaluation and service design.
The aim to refine and implement a model of partnership between the health board and people with long-term mental health conditions, working together to commission quality health care services which meet the needs of patients using them.
Providing services to patients
Taking “User” involvement to its extreme, it is possible to develop services that involve lay people in their delivery. Peer to peer support is but one example. There is work going on in various areas to promote improvements in quality. Professional organisations including the Royal College of General Practitioners (RCGP) are helping their members to address issues like clinical governance, and are developing quality assurance mechanisms. Public and patient involvement in audit, clinical guideline development, research and clinical outcomes work should be encouraged and promoted. as under the new mental health act 2003 section 25 to 31
Service “User” Development and involvement in Mental Health
Service “User” Participation and involvement can improve communication, lead to better targeted and more appropriate services, and can help communities to tackle mental health inequalities from the bottom up. The use of community development as a means of supporting a broad range of involvement is an important ingredient in the menu of approaches and methods that foster “User” involvement. In areas of inequality in mental health, the range of social and
community support found is often inadequate. This can give problems to mental health workers who are attempting to build public involvement into their activities as the framework for the involvement is not there. Primary care trusts may need to invest in broadly based work in some communities to provide a foundation for developments. Work on social inclusion and the trust and its workers need to develop it through alliances with the local authority, other agencies and the community.
One of the successful ways in which action on mental health in communities can be developed is through the support and development of community health projects. Recent health service guidelines have stressed the importance of community development and participation in tackling inequalities, building on the lessons that have been learned by community health initiatives. Action to further develop this type of work is already taking place. Designed to Involve …directed in particular at people who feel excluded from society. It consists of a set of methods which can broaden vision and capacity for social change, and approaches, including consultation advocacy and relationships with local groups. It is a way of working which is informed by certain principles which seek to encourage communities – people who live in the same area or who have something else in common – to tackle for themselves the problems they face and identify to be important, and which aim to empower them to change things developing their own skills, knowledge and experience and also by working in partnership with other groups and with statutory agencies. The way in which such change is achieved is crucial and so both the task and the process are important.
