Shaping Our Lives- Final report for University of Essex on Service Use and Carer Involvement Strategy

Shaping Our Lives

11th April 2019


service user project involvement outcomes and opportunities



Shaping Our Lives was commissioned to work with Danny Taggart (Involvement Lead (for the School of Health and Social Care (SHSC) at the University of Essex from the start of the academic year in 2017 and ending with supporting the ‘Involvement Matters’ event on 23rd November 2018. As part of this work, Shaping Our Lives did the following things:

  1. Met with Vasilios Ioakimidis and Stephen Jordan from the Centre for Social Work to discuss the current benefits and challenges of managing the Southend-on-Sea Service User Reference Group (SURG).
  2. Circulated an involvement experience questionnaire to current SURG members at both sites.
  3. Met with both SURG groups to discuss the feedback from the questionnaires and other ideas the SURG members wanted to share.
  4. Prepared a paper reflecting on the current involvement practice and detailed recommended actions relating to practical arrangements, governance procedures, rewards for involvement and future procedural and structural considerations.
  5. Attended SURG meetings at both sites throughout the academic year to facilitate discussions about future aspirations of the SURG groups. One outcome of these discussions was to agree a joint SURG (both university sites) ‘celebratory’ and recruitment event.
  6. Supported the creation of new Terms of Reference, Confidentiality Policy and an information sheet detailing the remuneration arrangements for service user involvement.
  7. Attended the SHSC senior staff meeting with Danny Taggart to present our findings so far on the involvement of service users in teaching programmes and to highlight some of the opportunities for development.
  8. Met with programme leads for Nursing and discussed service user involvement in the course review.
  9. Supported the planning and delivery of the Involvement Matters event in November 2018.
  10. Collaborated with Danny Taggart on this final report of activities and future proposals.


Shaping Our Lives has also collaborated on several research proposals for funding.


As part of the work completed by Shaping Our Lives we developed a statement about the aims of involving people with lived experience. This would be a good time to reflect on the statement proposed:


“Involving people with lived experience of impairments and long term health conditions, and using health and social care services, provides experiential knowledge that is valuable and cannot be substituted by traditional classroom study. The expertise that is shared by people with lived experience is vital in developing student understanding so they are able to develop person centred and inclusive practices as a professional. People with lived experience offer a unique insight that is equal to that of academic study.”


This statement, or something similar, could be used to frame future involvement strategies and activities, ensuring that there is a common understanding between all stakeholders.


  1. a) Structure and Processes

There is a  wide variety of ways that service users can become involved in learning at the University of Essex and these opportunities are not the same for all academic programmes. Therefore, it is recognised that it is not possible or appropriate to have a uniform approach to involvement across the SHSC. Trying to rationalise or standardise involvement activities would actually be counter-productive and contrary to innovation. It is also important to note the different role of the SURG groups compared to service users who take part directly in teaching programmes but do not take part in the SURG groups. The different structures and activities create both a challenge and an opportunity.


Challenges include that there is no single central database of all the service users who take part in teaching programmes and this makes it difficult to ensure everyone is involved equally and given the same opportunities.

Recommendation: for all teaching programme leads to ensure that there is a process for sharing general communications about involvement to people engaged in involvement activities in their area of study.


A further challenge is the separate locations of campuses and the difficulty travelling between the two. SURG members from both sites expressed a desire to have more opportunities to work together. For the Involvement Matters event, a bus was hired to bring members from the Southend-on-Sea SURG to the Colchester campus. Although this is not practical (or affordable) on a regular basis, it is suggested that a joint event once a year would be beneficial.

Recommendation: To establish leads on each Surg group who can share information between the groups to build collaboration and inspire new activities.


Shaping Our Lives made a number of recommendations in our initial report (November 2017). Commonly, it was recommended that the service user members of each SURG led on changes and improvements to the structure of the groups. A number of these have been adopted such as having a service user Chair for SURG groups with defined time in office, Terms of Reference that are appropriate to the purpose of these groups and a confidentiality agreement. There has been some progress in defining roles within each SURG, however, each group should be encouraged to define short and long term objectives for their SURG and agree on lead roles to ensure these objectives are met. This would help to make the SURG groups more accountable and productive.

Recommendation: To allow each SURG group to define the purpose of the group, agree objectives and related actions with defined roles to lead on these.


To manage power imbalances within SURG groups it is strongly advised that ‘ground rules’ are adopted (Shaping Our Lives ground rules are attached). Ground rules should be decided by group members and used at the start of each meeting to set boundaries for involvement. They provide a useful tool to managing behaviour that is difficult for some members.

Recommendation: Ground rules to be read at the start of all meetings and members to be asked how they found the meeting when it ends. This feedback can provide useful guidance for future meetings.


Finally, there has been very positive feedback from academic staff who have attended SURG groups. It is an opportunity for staff to learn more about involvement activities and to discuss ideas.

Recommendation: Academic staff are invited to SURG meetings on a regular rota. Engage the staff in talking about involvement activities and opportunities through interactions that will encourage equal roles for attendees e.g. SURG members could ask questions and offer advice on how to develop involvement in teaching.


There is not a commonly accepted term to describe people who take part in involvement across the universities and different roles. This is further complicated by the terms used by administration departments when referring to different ways that people can be remunerated. Tax and benefit systems mean that it is not possible to create a uniform structure for remuneration although it would be beneficial for all staff engaging with service users to have training on involvement payments and how they can affect rights to welfare benefits. The SURG groups agreed the following terminology to be used interchangeably: service users, people who use services and Experts by Experience.


  1. b) Recruitment

The current application form for service user representatives does not include a question about skills. Several people on the SURGs indicated they were being under-utilised and/or had skills that could be used for other activities. A solution for this has not been reached during the project, however, it has been suggested that each service user keeps a record of involvement that could then be used for employment, voluntary or other involvement opportunity applications. It is important that this record includes feedback to the service user on their performance and the outcome of their involvement.

Recommendation: Further consideration is given to how skills can be audited and used for matching people to involvement requirements. In addition, to develop a person specification for different types of involvement activities such as interviewing, running a student workshop etc. Peer training has been discussed and is an opportunity to develop the skills of service user representatives.


The Involvement Matters event was successful in attracting more people to become involved at the university. This event was then followed by an induction event. The momentum created by this event should be maintained by either an annual recruitment event or by a programme of promotion through local voluntary sector groups. There is an opportunity to involve students in social media led campaigns and/or SURG members in sending a regular recruitment email to local voluntary groups.

Recommendation: Recruitment is part of the objective of each SURG group. A plan and resources are allocated accordingly, possibly using a number of students as added support.


  1. c) Collaborative working

During the course of the project there have been several conversations about collaborative working between service user representatives, academic staff and students. In particular, there is an opportunity to offer students learning and development opportunities by working with a SURG group. Collaborative working can help to reduce and/or remove perceived fears about service users and is valuable to students when they become professionals.


Some of the ideas discussed include:

  1. Service users interviewing students about what they gain from service user involvement in teaching and creating a regular blog.
  2. Students supporting recruitment activities by engaging their skills with social media and video.
  3. Students and service users hosting a joint stand at Freshers Week to recruit new students who may be interested in working with the SURG groups.
  4. There is only a small budget for involvement activities so it has also been suggested that students and service users could collaborate on raising funds for recruitment and other activities. For example, students could publicise a simple fundraising day such as ‘dress up’ day. However, it should be noted that the original recommendation included that a centralised involvement budget was created for the SHSC with a contribution from each department within the school and Shaping Our Lives continues to support this recommendation.


  1. d) Communication strategy

In the survey SURG members commented that they would like to have more information about the involvement opportunities in other departments in the SHSC (generally they only know about involvement opportunities in the department they have been recruited to).


There has also been discussion that an involvement webpage could be used to raise awareness of the activities and opportunities. This would need some investment and resource to create and maintain but would be useful to service user representatives to share and find information more generally.

Recommendation: To provide a central web based area for information and promotion of involvement activities.


Awareness raising of service user involvement in teaching needs to be promoted more widely and it is suggested that a presence at key times in the academic calendar would support this e.g. an involvement  stand at Freshers Week. It has also been agreed that the monthly newsletter for staff should include updates about involvement activities and the SURG meetings.


e) Future working with Shaping Our Lives

Although the involvement project that Shaping Our Lives was commissioned to complete has now finished, we are happy to continue to advise on developments. There has also been collaboration between Shaping Our Lives and the University of Essex on a number of funding applications and it is hoped that we can continue to provide a service user perspective and involvement expertise for these joint proposals. In particular, there is interest in Shaping Our lives facilitating a workshop to develop research ideas based on service user priorities.