The Wharfside Patients Forum at the Jefferiss Wing

A Framework for Engagement Agreed Between Service Users and Providers

The Jefferiss Wing at St. Mary’s Hospital is a sexual health clinic dedicated to designing its services and deploying its resources around the needs of its service users. The work of the Wharfside Patients Forum – an independent group of users of HIV services - is intended to form an important part of this process.

This Framework for Engagement is the product of an agreement between users and providers aimed at ensuring that user involvement takes place in a form which is as open and equitable as possible while safeguarding the interests both of users and of service providers. It is intended to be a living document, open to revision by agreement at all times.

AIM

The Wharfside Clinic and its Service Users will form an independent body, supported by St. Mary’s NHS Trust as part of the Trust’s Public Involvement Workplan that enables service users to give the Jefferiss Wing well-considered views about their experience of HIV and sexual health services.

OBJECTIVES

• To be a forum for information-sharing and open discussion between the Centre and its users
• To enable users to participate in the planning and development of services, identifying the most appropriate ways to do so
• To be a positive and enjoyable process for all. It is not a forum for the handling of complaints, which should continue to be dealt with via the Trust’s Complaints Procedure.
• To support other aspects of the HIV service, such as the Clinical Trials Centre
• To provide a secure and supportive base from which group members can be involved in other NHS forums
• To contribute to the Trust’s Public Involvement Strategy and Workplan

CONFIDENTIALITY AND RESPECT

• It is acceptable for any member to talk about the work of the forum, its general composition in terms of numbers, gender etc, the way it operates, the issues it is considering and the general positions adopted by both sides providing this does not put at risk any individual's confidentiality (including the fact that he or she is a group member or a user of the Wharfside Clinic) or result in any private clinic issues being revealed.
• Both users and providers agree to respect and value the expertise and experience both of patients and of professionals
• Both users and providers agree to work to improve trust amongst members and between users and providers
• Membership of the Wharfside Patients Forum, and any views expressed as part of the user involvement process, will make no difference to any individual’s right on the basis of clinical need to receive equal, impartial and professional treatment and care.

FORMAT

• There shall be a core membership of those among the users who attended the first meetings of the forum, and who could offer a reasonable time commitment.
• At each meeting a member will be identified to take notes
• No further members will be admitted without the agreement of both users and providers, and the availability of an agreed appropriate induction for the new members.
• All members will have the opportunity to attend a team building event to be held, sponsorship permitting, at which members can explore issues such as confidentiality in greater depth with each other and Clinic staff.
• Jefferiss Wing Staff will be welcome to attend all meetings. Others must be formally invited by the group.
• The Jefferiss Wing will endeavour to provide, where service and staffing requirements allow, continuity of Staff representation, however this cannot be guaranteed.
• Initial Staff representation will be from a Nurse Specialist and a Consultant.
• The Wharfside Patients Forum will support the Public Involvement Manager in establishing further user groups within the Trust, including the Trust-wide Patient Forum
• The frequency and times of meetings will be decided by the group and reviewed at least annually

ROLES AND RESPONSIBILITIES

• These apply to all members, individually and collectively
• Members will recognise the diversity of Jefferiss Win g s ervice users and proactively elicit views from diverse groups of service users by advertising and promoting the Forum both internally in the Trust and externally amongst community organisations, and by identifying appropriate methods for encouraging user involvement
• They will provide a formal link for taking user views to the Management of the Jefferiss Wing. The precise method will vary, but could be via attendin g s taff meetings, via the Service Manager, or via Staff attendance at Away Days, where invited
• They will be aware of the Trust’s Complaints Procedure and Patient Advocacy Liaison Service (PALS), and will direct patients to them as appropriate
• They will provide prompt and clear feedback from meetings to service users, using for example the internet, noticeboards, newsletters and bulletins, and will feed into the Wharfside Clinic HIV Team Leaders Meetings.
• They will undertake training as necessary

SUPERVISION

• Managerial – Service Manager
• The Clinicial Nurse Specialist Team Leader will act as a point of contact and liaison in the Clinic for information and referral to other Clinic Team members
• External – the Trust’s Public Involvement Manager, as someone within the Trust but outside the Jefferiss Wing, may provide guidance and support to the Forum. It may be useful in future to identify an outside supervisor and/or particular members to advise and support the group’s user involvement processes.
• Support to the Forum will also be available from the network of HIV patient groups that is bein g s et up in partnership with the UK Coalition of People Living with HIV and AIDS

SUPPORT

• Members should be able to claim reimbursement of travelling expenses
• Refreshments and accommodation will be provided at a convenient location
• In time, it is hoped that funding will be identified either internally through business planning or externally through sponsorship for use of a computer, an e-mail address, photocopying, secretarial support, crèche facilities and training for members
• The Jefferiss Wing agrees to provide appropriate supervision and support to Staff attending the Forum, and to ensure that the Forum’s views inform the Centre’s decision-making and planning processes