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How to set up a patient user group

Paula Studd
RGN BSc(Hons)
Nurse Consultant Colorectal Services
St Mary's
NHS Trust
London

One of the key themes running through The NHS Plan is the need for patient-focused care.(1) User involvement and consultation is high on the Department of Health agenda, and the present government is keen for users of the NHS to have their say about their experiences, and to be central to service planning, provision and improvement. A Commission for Patient and Public Involvement in Health (CPPIH) was set up in 2003 to ensure the public is involved in decision-making about health services in England.(2)
User groups are just one way to obtain patient feedback. Alternatives include satisfaction surveys, suggestion boxes, discovery interviews, user-focused monitoring and patient public involvement (PPI) forums.(3-5)

Definition of a user group
A user group can be defined as "a group of people who have used the NHS service and who are invited to comment on and share their experiences by giving feedback that can promote positive action. It can also provide a patient perspective on new initiatives before introducing the idea."
Health service users are experts in their own right; they can see the bigger picture, the process and the communication of their care. A user group is a way for clinicians and managers to actively listen to the views of the users, which can be a rich and unique source of information. In a large institution, such as the NHS, it can be easy to slip into a culture of tolerating ways of working that are unacceptable for patients and that can, eventually, become the norm. Thus, listening to patients' stories and experiences can bring the reality back.
It is important to distinguish between a user group and a support group, as they often get confused. This needs to be clear in invitation letters and on the first meeting with them. A support group enables patients to share personal experiences, to talk to and listen to others who have been through a similar experience. Information, support and encouragement is given, and they may learn more about their illness and how to cope emotionally and physically.

User groups in primary care
A user group could be set up in primary care for the purpose of looking at either general or specific areas. For example, if a group of willing patients came together they could discuss their experiences of their GP visits; from making the telephone call to make an appointment, the welcome in the reception and their view of the surgery environment, to the clinical care and the verbal and written information received, and so on. The users could give a unique perspective, make suggestions and comment on new services offered in primary care.
Alternatively, with more nurse-led clinics for patients with diabetes and asthma in primary care, these could allow for more specialist groups of patients to come together to discuss their experiences of the care and how it could be improved through primary and secondary care, and the communication between the two sectors.
User groups in primary care could be used to highlight and prioritise areas for service improvement and development. Recurring themes of what patients say could be raised at team meetings. The power of the patient voice may help to push forward problem areas that need funding.
Hearing patients' views provides a different perspective. What nurses think are the issues concerning patients may not be important at all, and vice versa. Users can help to take a lead, for example, designing posters and editing patient information leaflets. Their comments and new ideas may help initiatives be implemented more smoothly.

Before setting up
Before you set up your user group you may find it useful to ask the following questions:

  • What do you want to achieve by setting up a user group?
  • Do you have the support of senior colleagues?
  • Do you have the financial resources to support the group?
  • Do you have the time, enthusiasm and commitment?
  • Are other user groups being run elsewhere in the local PCT or nationally that would be worth visiting for ideas?
  • Can the internet be used to identify user group work (eg, the Incontact or Macmillan websites)?
  • How will you recruit patients to attend the meetings?
  • What will be the terms of reference and the objectives of meeting?
  • Where will meetings be held? Venues should have toilets nearby and should be easily accessible.
  • How will you fund the cost of travelling and refreshments for the members?
  • Does the clinician have time to facilitate meetings, organise the agenda, type up minutes, action the points from the meetings and give feedback to the group?
  • Does the facilitator have a forum, department or individual that they can feedback the users' views to and follow up any action from this?

Some of the work can be shared out to the users themselves. Be aware what skills the patients can bring to the group, such as marketing, printing, secretarial, multilingual and artistic skills. These skills can be easily established by asking the group to complete a questionnaire that can be downloaded from the Macmillan website (see Resources).

Resources
Resources are needed for setting up a user group for, for example:

  • Travel expenses.
  • Hire of a room/venue.
  • Refreshments.
  • Publicity materials.
  • Flip chart, paper and pens.
  • The facilitator.
  • Attending workshops or conferences.

Funding
Macmillan Cancer Support currently has a fund for new user involvement groups.(6) Some Cancer Networks also have funding that local trusts can apply for. Other charities provide advice on setting up groups, such as Incontact.(7) Recently, certain individual acute and primary care trusts have allocated specific funding for user involvement initiatives. It is also worth looking into courses available for development of facilitation skills and for the users to develop their skills for effecting participation.(8,9)

Recruiting members
A good way to establish whether you think users would attend the meetings is to speak to a few individual patients first to see whether they would support the idea and come along. Initially it may be necessary to select volunteers rather than to ask for volunteers. Invitees could include:

  • Existing patients.
  • Past patients.
  • Relatives or carers.
  • People with special skills/professionals.
  • People who share the aspirations of the group.

Criteria for selection may include:

  • Ability to attend meetings on a regular basis.
  • People with particular skills.
  • People who represent the diversity of patients.
  • People who have indicated a willingness to be involved/have opinions.

Other ways of publicising the work of the group and attracting members include:

  • Placing a poster or a notice in the GP surgery that invites people to join the group.
  • Individual clinician requests.
  • Handing out patient information leaflets about the user group.
  • Mailing or telephoning patients.
  • Advertising through local branches or voluntary groups.
  • Advertising in local newspapers.

Not all users want to come along to a group or are  physically able to. By offering patients the opportunity to write down their comments or tell a member of staff their concerns, these could be presented by the facilitator of the group to discuss.
Recruiting new members should be an ongoing task to keep the group dynamic. Introduce new members to the group at the beginning of the meeting and offer them the opportunity to say a bit about their experience. It is vital to recognise new members, make them feel welcome and thank them for their time. When new members show interest, send them an information pack about the group, terms of reference and a copy of the last set of minutes and agenda so they are aware of what is currently being discussed before their first meeting.
The invitation should include:

  • What a user group is, as opposed to a support group.
  • Why users should be involved (benefits).
  • What they can expect (activities).
  • Who will be there.
  • Date, location (map), accessibility details.
  • Contact details.
  • Proposed terms of reference.
  • Proposed agenda.
  • Mission statement.
  • Details of getting reimbursed for travel expenses.
  • Information, such as that refreshments will be available.

The first meeting
Seating in a circular fashion and at the same level so that views can be shared more easily works well and encourages equal participation.
Welcome everyone and ask them to introduce themselves, explain the purpose of the group and agree terms of reference and objectives of meetings. It is good if some senior members of the practice or trust could be there for the initial meeting. Agree when to meet and how often, and discuss what is the best time of the day for meetings to take place. A chairman and/or facilitator may be selected. The chairman has responsibility for coordinating the group and managing the meetings. A facilitator can provide support to the group, such as preparing papers for the meeting, briefing members before each meeting, taking minutes at meetings, and making other practical arrangements when necessary. Flip charts are useful tools to have as they can help with writing up minutes and action plans after the meeting. These can then be taken to the appropriate department for discussion.
It is important for the user group to get regular feedback from the facilitator about the actions that are taking place between meetings. This helps to establish what progress, if any, has been made. Thus the user group feels that the meetings are not just "talk shops", even if the outcome takes some time or has a negative response. If the facilitator is a clinician in the hospital, the outcomes from the meetings can go to the department's service improvement programme meetings, which he/she will be involved in too (users may be encouraged to attend these meetings too).
Ground rules are important to establish in a first meeting, for example:

  • To agree confidentiality and to be open and honest.
  • Thoughtfulness and respect for others, allowing one person to speak at a time, for example using the "round robin" technique.
  • Clinicians should avoid or explain any jargon.
  • Discuss and agree whether relatives can attend with the users.
  • Discuss whether they want to be informed if someone cannot attend anymore (eg, due to illness or death).
  • Ensure that the members know they shouldn't feel that they have to come every time and that it is fine if they want to stop attending.

It is not unusual for the first couple of meetings to be less productive than desired. This may be because people are not sure about their role within the group, how much they can say and how open they can be. This soon starts to improve if the facilitator role is effective and well prepared and the group members gain confidence.

St Mary's user groups
The members of the colorectal user group at St Mary's NHS Trust have gone through their journey of care, focusing on one part of that journey at a time in each meeting (eg, GP visits, outpatient visits, ward and follow-up care). Prompt questions helped to initiate group discussion, which was prepared before the meeting after consulting with relevant others. Some of the issues raised were about patient information, waiting times, GP assessment, ward care and environment issues.
In response to these and other examples, the group has:

  • Helped to review new and existing patient information leaflets.
  • Piloted and helped to write patient satisfaction surveys.
  • Contributed to the organisation of a GP educational workshop day including a presentation from a user group member who represented the users' views of their GP visit experience.
  • Provided feedback by talking to groups of staff on nurse education days.
  • Reviewed and helped to write clinical assessment tools for patients.
  • Generated ideas for health promotion and education. One finished project included designing and printing a bowel cancer awareness poster for GP surgeries and local areas.
  • Reviewed the content of clinic appointment letters.
  • Commented on the attitudes of staff and communication.
  • Volunteered for the department.
  • Offered to be expert patient "buddies" to newly diagnosed patients within a peer-support programme.
  • Attended Cancer Network meetings and cancer peer-review panels to represent the users.
  • Arranged meetings with local MPs.
  • Set up own user group funds and raised money.

One user group member at St Mary's stated:
"I am motivated by the fact that our meetings produce very tangible results. Our suggestions are taken seriously and acted on. I feel that having been through the experience of a cancer diagnosis I wanted to put something back. This is a perfect forum for doing that."

Possible drawbacks
It is important to be aware that there are drawbacks to user groups, such as:

  • Only a small number of users will come to this type of forum, which may not therefore be representative.
  • It may be self-selecting in attracting only certain people, for example those who are vocal and physically able to attend.
  • There is a need for effective facilitation, otherwise the group will not continue.
  • Administering a user group is time-consuming, and it can be exhausting to prepare and run a group, action the points and give feedback on the issues to be resolved.

Conclusion
User involvement is still a new concept in the current NHS. It requires a different way of thinking from both health professionals and users of the service, who are seen as equal partners in identifying issues and improving care.
There are few ways to really measure care. Many clinicians receive thank-you cards. At the other end of the spectrum is receiving a complaint. There isn't much in the middle, and there's a lack of any forum for constructive criticism.
Having user groups allows a trust to be more responsive to local needs and allows users an avenue down which to direct issues, which could result in fewer complaints.
However, there needs to be a mechanism in place in the trust that ensures that feedback is given and action is  taken forward by the department.
Patient and public involvement is a continuous process of listening, learning, developing and promoting effective action to continually strive to improve the quality of care.

References

  1. Department of Health. The NHS plan. London: DH; 2000.
  2. National Commission for Patient and Public Involvement in Health (CPPIH).
    Available from: http://www.cppih.org
  3. Westminster PCT. User focused monitoring project. Available from:
    http://www.westminster-pct.nhs.uk/involvingpeople/index.htm
  4. Department of Health. Patient public involvement. Available from:
    http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/PatientAndPubl...
  5. Directorate of Health and Social Care. Public and patient involvement in London: a practical guide. London: DHSC London Quality Taskforce; 2002.
  6. Macmillan Cancer Support. Available from: http://www.macmillan.org.uk
  7. Incontact. User involvement: a practical guide.
    Available from: http://www.incontact.org
  8. Preparing Professionals for Partnership with the Public.
    Available from: http://www4ps.com
  9. Macmillan Cancer Support. Cancer voices. Resource pack for groups and individuals affected by cancer. A guide to getting involved.
    Available from: http://www.macmillan.org.uk

Resources
Macmillan Cancer Support
W:www.macmillan.org.uk
Incontact
W:www.incontact.org/