Aims

- to enable a constructive exchange of views on effective dialogue with users, carers and National Health Service (NHS) professionals, which can promote mutual understanding through the exchange of information, experiences and perspectives on both sides.
- to develop knowledge about effective patient and public involvement consultation models
- to address some of the problems faced when trying to change culture within the NHS when faced with a seemingly ‘threatening’ patient agenda.

Objectives of the project

The overall objectives for the project were:
• To establish a climate of trust between professional and user groups to enable the constructive exchange of information.
• To involve as wide a representation of user and carer views as possible within the Dorset locality (recognising that existing patient groups cannot represent all patients’ views).
• To enable the exchange of information in both directions.
• To identify areas in the provision of services where change is possible and desirable from the perspective of both professionals and users, and to support change in these areas.
• To identify areas where change is desirable, but does not seem possible, to take up to a higher level for investigation.
• To identify examples of good practice and to publicise these within the locality, so that users and professionals can seek to replicate these where possible.

Method: The CCOG Model

Concerns

- The Clinical Governance Manager was approached by patients with endometriosis to discuss areas of clinical concern. A wider project was suggested encompassing the views of other patients from two support groups in East and West Dorset.

Communicating

- Initial stakeholder dialogue was set up (with patient groups and with clinicians), explaining the purpose and background of the project, thereby gaining ownership of the project and establishing a positive climate of interaction (the importance of this aspect is crucial to the success of the overall project and will be a discussion point for the workshop).

Organising

- Agreement was gained for the programme by the purchaser and included as part of the Trust’s Clinical Governance Development Plan.

- Funding for a Project Coordinator - a ‘respected’, non-threatening facilitator – was identified through PPP Healthcare Medical Trust and Poole Council for Voluntary Service. The Project Coordinator identified all personnel, whose work was targeted by the clinical area, including nurses, GPs, consultants and patient representatives from the East and West Dorset endometriosis support groups.
? Open forum meetings were planned with patients and their carers to explore experiences and gain insight into problems and priorities. Thematic and narrative reports were written on the patients’ and carers’ experiences, highlighting principal areas of concern.

Goal setting

- The patient experience reports were fed back to an inter-professional group of clinicians and other professionals involved in the management of endometriosis, who met to address particular aspects of care in relation to the findings of the reports. Different professional perspectives and difficulties commonly encountered in managing particular aspects of care were summarised at the meeting.
- A report was fed back to the patient groups.
- Joint meetings of representatives of the patients and professional group were set up to identify areas in the provision of services where change is possible and mutually agree action and goals. Any areas where change was desirable but did not seem possible were taken up to a higher level for investigation
- Small sub-groups were given the task of developing action plans on specific issues – education and training, information, guidelines development, pain management.

Outcomes

Foundations have now been built to enable future dialogue between certain patient groups and multidisciplinary professional groups to enable a constructive exchange of views and information. The Trust is developing knowledge about consultation models which has informed the Patient and Public Involvement (PPI) Strategy and which will be useful for staff training in PPI methods over the coming year. Outcomes to date following the endometriosis project are as follows:

- A Dorset Guidelines development group has been established, with consultants from Bournemouth, Poole and West Dorset hospitals, GP representation, specialist nurses, and patient representatives.
- Funding has been obtained to publish and distribute the guidelines, together with funding for an accompanying patient version of the guidelines
- An ‘educational group’ is being set up to agree an awareness/educational programme for professionals, using the patient experience. Discussions are being held with the Endometriosis SHE Trust on the educational module for practitioners undertaken in Lincolnshire, based on RCOG guidelines.
- Training sessions have been held for Senior House Officers, GPs and other health care professionals on pelvic pain and the management of endometriosis.
- A pain management session was held for patients at a local support group meeting.
- In one GP practice, a nurse has been using open questions during routine smear test checks to identify patient symptoms suggestive of endometriosis.
- An information ‘signposting’ leaflet to sources of support following diagnosis has been produced locally with patient input. This is available to patients in Poole Hospital outpatients’ clinic, day case and gynaecological wards.
- A basic information leaflet on endometriosis has been produced as one of a series of gynaecology leaflets available at Poole Hospital and the hospital’s Health Information Centre has expanded its reference materials and has produced a ‘bookmark’ detailing web-sites relating to endometriosis.
- A Women’s Health Community Specialist nurse (already in post) has agreed to be involved in a pilot study to provide telephone support for women with endometriosis. An audit of self-referrals will be undertaken to ascertain increased workload.
- Part-funding has been obtained for the purchase of a CO2 laser for endometriosis. Training on its use is being addressed.
- Endometriosis patients are involved with the delivery of self-management courses for people with long-term chronic conditions – both as tutors on the generic Expert Patient Course and on the Self Management courses run by the National Endometriosis Society.