South Kent Mind believes that service user involvement is critical to the creation, development, and delivery of services and that this must be clearly defined, accessible, diverse, and measured.
There are five levels to service user participation:
- Consultation – Giving feedback within fixed boundaries
- Working Together – Contributing within fixed roles and boundaries
- Doing Together – Working together towards common objectives
- Deciding Together – Working as partners and contributing to decision making
- Leading – Leading projects and making decisions independently
This information below represents the 2015 revised version of the National Involvement Partnership (NIP) national involvement standards. We also use this information to guide our service user involvement.
- Principles – Shared principles and values
- Purpose – Clear and shared. To improve services and the experience of services for service users and carers.
- Presence – A diversity of service users and carers should be involved at all levels and stages of an activity, organisation or project.
- Process – Carefully planned and thought through, in order to ensure that service users and carers can make the best possible contribution
- Impact – Assess the impact of involvement
Meaningful involvement starts with a foundation of shared principles and values.
- To bear in mind at all times that our ultimate goal is to improve people’s mental health, wellbeing and recovery, a key part of which is to improve services and people’s experience of those services
- The need to embrace inclusivity, equality of opportunity and fairness
- A commitment to listening to service users and carers with respect and openness
- A commitment to change in response to the views of service users and carers
- Clarity and transparency from the start in all communications
- Acknowledgement of the power differentials that exist between professionals and service users, and a commitment to minimise them where possible
- A commitment to support race equality and to challenge discriminatory organisational practices
- An open-minded approach towards cultural differences and diversity in ways of working
- Sensitivity about language and actions: to acknowledge that there are different ways of expressing and doing things.
The purpose of involvement needs to be both clear and shared with all of the people who are engaged in the involvement activity. The core purpose of any involvement activity should be to improve services and the experience of services for service users and carers.
- The purpose of involvement needs to be clearly stated and agreed at the start so that everyone connected with the involvement activity or organisation knows why service users and carers are being involved
- Clarity about the purpose of involvement should be extended to individual roles and potential activities for service users and carers
- Clarity and transparency needs to be shared about the potential for involvement and influencing, as well as the limits of influence
- The intended outcomes for involvement should be agreed and recorded at the start in order that they can be monitored and evaluated
Ensuring that a diverse range of service users and carers are involved at all levels and stages of an activity, organisation or project.
- A diversity of service users and carers should be involved at all levels and stages of an activity, organisation or project.
- Service users and carers should be involved at all levels within the organisation, project or activity including at decision-making levels;
- Service users and carers involved in an activity should include people from diverse backgrounds and communities. This is particularly significant for communities who are over-represented within mental health services as a whole.
- At an early stage, an analysis of the population under consideration should be undertaken in order to ensure that the involvement activity reflects that population – and to ensure that people particularly affected by the service or issues under consideration are actively approached for inclusion.
- There are monitoring procedures in place to monitor the presence of service users and carers, and the diversity of those involved, throughout these levels.
- Potential roles for service users and carers within organisations were identified in the previous NIP work, but other roles are also possible:
- Ambassador (i.e. committed to the ethos of the work stream or programme, promoting it, spreading the word, engaging others)
- ‘Critical friend’ (i.e. both programme and involved users/carers able and prepared to engage
in meaningful debate to reach a satisfactory negotiation of work programme/policy/delivery)
- Co-worker (i.e. working directly with programme members to deliver the work of the programme)
- Care should be taken to ensure that service users and carers can be involved separately or give their views in separate ways as their views and priorities are likely to be different.
- There should be a minimum of two and ideally three service users/carers in any meeting, with a reserve person at high-level meetings; one service user or carer should never be expected to attend a meeting and represent the views of service users or carers.
The involvement process needs to be carefully planned and thought through, in order to ensure that service users and carers can make the best possible contribution.
- Information should be made widely available through a number of channels to ensure that service users and carers are informed of the opportunities for involvement
- A range of different ways of being involved should be made available, in order to attract a wide range of service users and carers; this may mean adopting non-traditional approaches such as outreach or working with mediators from diverse communities
- There should be a fair and transparent recruitment process
- Role or job descriptions should be drawn up for involvement posts
- Flexibility should be built in, to enable people to take advantage of different opportunities and to move in and out of involvement when they wish to or need to;
- Meetings should take account of those involved and should consider reasonable adjustments, such as not starting too early in the day in response to the difficulties experienced by some people taking psychotropic medication
- Clear and regular communications should be adopted throughout an involvement activity
- Jargon should be avoided – or clear and repeated explanations of terms and acronyms used should be given
- Any written documents need to be sent out well in advance of meetings for people to have time to prepare
- Feedback about the results or outcomes of an involvement activity should be given
- Decision-making processes need to be open and accessible
Support and Training
- Support for people involved needs to consider:
- Administrative support,
- Supervision, and
- Emotional support (the emotional content and cost of involvement should not be overlooked)
- Opportunities for peer support or peer mentoring should be provided;
- Training should be given to enable equitable involvement and skills development
- Training should be given to professionals/members of staff to raise awareness about involvement.
- Where possible, training should be shared by service users, carers and professionals taking part in an involvement process, as this can help to build a sense of teamwork.
- The policy and budget for the payment of fees and expenses needs to be clarified in advance of involvement
- Information about payment of fees and ‘out of pocket’ expenses should be clear from the start; actual payment should be clear and timely
- Respite care and childcare should be taken into account when considering payment for people to become involved
- Travel to be booked in advance where possible to avoid people being out of pocket.
For involvement to be meaningful, it has to make a difference; it should lead to the improvement of services and the mental health and wellbeing of service users and carers. Becoming involved can also have an impact on the people who are involved (for example, increased skills and confidence). However, the purpose of involvement should always remain at the centre of any attempt to assess impact.
In order to assess the impact of involvement, the following questions need to be asked:
- What were the intended outcomes of the involvement activity? (refers back to the purpose of involvement)
- What actual difference(s) have service users and carers made to the project, activity or organisation? (This can be monitored by continuous recording throughout a project as well as assessment at the end)
- How did everyone feel about the process of involvement? (e.g. using ‘end of involvement’ questionnaires)
- Did the involvement of service users and carers make a difference to the end result of the activity/ project?
- Did the involvement of service users and carers make a difference beyond the activity itself – to the delivery of services or the understanding of mental health, to the culture of the organisation, to the recovery or wellbeing of individuals?
Impact needs to be explored in the following areas:
- Ethos/culture: has the involvement of service users and/or carers influenced the ethos and values of the organisation, project or programme: made it more acceptable and accessible to services and people locally? … made it more inclusive of diverse and marginalised groups?
- Policy and Planning: has the involvement of service users and/or carers influenced the development of policy or the planning of the project (at governance level)? Is it possible to pinpoint specific decisions or directions taken by the programme that were influenced by service users and/or carers? Have specific developments been designed or led exclusively by service users or carers?
- Delivery: has the delivery of the project been influenced by service users or carers? Have service users or carers been involved in delivering alongside other team members (e.g. training, presentations at conferences)?
- Outcomes and outputs: have the outcomes of the programme been influenced by service users or carers? Has the programme as a whole had a different impact than it might have done as a result of the involvement of service users and/or carers? Have any of the materials produced been designed or contributed to by service users or carers?
- Diversity and equality of opportunity: Have people from diverse communities been involved in the activity? How did they experience the process? Consider carrying out an equalities impact assessment.
- The experience of the service: has involvement made a difference to the experience of the service from the point of view of service users and carers? Regular surveys and in-depth interviews/focus groups to explore the service experience need to be built into the quality cycle.
- A cyclical approach: Involvement should be regarded as a continuous process and follow a cycle of improvement or development. Some people may use the terminology: Plan – Do – Study – Act (PDSA) often used in health improvement technologies.