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CFS and ME Northern Clinical Network
The Northern CFS/ME Clinical Network is committed to working in partnership with patients to ensure services continue to meet needs and to inform longer term planning.
This model for patient and patient group involvement for CFS/ME services was agreed at the Northern CFS/ME Clinical Network steering group meeting on 18 October 2006.
Principles and key values
- The primary focus for involvement should be on the people who are using the services.
- Consultation should be done through a variety of methods so the views of all can be included and not be reliant on specific individuals.
- Carer’s views need to be separately represented at all levels.
- That there needs to be a distinction in the roles between those people representing patients using the services and those people who are representative of a local or national patient group.
- The structure needs to be clear and transparent so that anyone interested in participating can understand the system, know how they can participate in it and what will be expected from them.
- There need to be opportunities for any patient to contribute, regardless of the level of severity of their illness, through using different communication methods, such as e-mail.
- That the structures help to support those involved, with appropriate training and opportunities for peer support and advice.
In addition, through the NHS-wide CFS/ME collaborative, patient representatives have offered the following principles:
- Understanding and consideration of the impact of having CFS/ME on people’s ability to be involved, e.g. having information beforehand, impact of travel to meetings, etc.
- Understanding each other’s roles - Clear expectations for everybody of the role and responsibilities of being involved as a patient and for patients to understand the context in which the services operate.
- For everyone to act professionally and sensibly, with open and honest relationships.
- Mutual listening, a willingness to listen and understand from all participants: good communication, such as sharing agendas and working together in mutual respect
- Knowing the system and the constraints
- Financial remuneration for expenses incurred in participating.
- Clarity around issues of confidentiality and dealing with complaints.
Northern CFS/ME Clinical Network steering group
The Northern CFS/ME Clinical Network steering group agreed that patient group representation will have a region-wide remit and the infrastructure to disseminate both to patients and to other groups/patients. To this end, ME North East, through their chair and chief executive, were invited to join the steering group and have added considerable value. Suggestions for improving how improved patient involvement can be achieved are welcome in the spirit of commitment to continuous quality improvement.
Local CFS/ME services
Local arrangements for patient partnership are required in order to meet local needs and requirements. In general, the following principles are suggested:
- Service user forums are established to enable service evaluation and input into service development.
- Local CFS/ME service steering groups offer an opportunity for service development discussion: patient representation on this forum is important and should be drawn from either the service user forum or a local patient group, whichever is the most appropriate to the local circumstances.
- Patient group input can be harnessed (patient group members may or may not be service users) through ME North East which has the organizational infrastructure to gather and collate patient views from its own membership and other groups and in return, to also disseminate information.
References:
Pemberton S, Elliott J (2006), Proposal for a structure for patient and public involvement, CFS/ME Collaborative
Contact:
Louise Wilson
E: [email protected]
M: 07887 993652/ T: 0191 291 9397
LW (FINAL. October 2006)
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