Clinical Network Coordinator Update

Update – December 2006

We are delighted to be working with Jennifer, Philip and the ME North East team in contributing to an event for patient groups in March 2007. 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. The clinical network signed up to a set of principles at its October board meeting which were:

• 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 offered the following principles:

• Understanding and consideration of the impact of having CFS/ME on people’s ability to be involved. For example, having information beforehand and understanding the 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

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 Philip and Jennifer are members of the steering group and have added considerable value. Suggestions on how improving patient involvement can be achieved are welcome in the spirit of commitment to continuous quality improvement.
Local arrangements by local CFS/ME services for patient partnership are evolving to meet local needs. Views are being sought from local service user forums (or a local patient group if more appropriate to the local circumstances).

As I write this, the regional NHS CFS/ME conference is two days away Wednesday 6th December. The Northern CFS/ME clinical network will be hosting an event for NHS staff working across the north east and north Cumbria. Around ninety delegates from a range of disciplines and specialties are signed up to join us for an update on the diagnosis and management of CFS/ME, hearing expert speakers from the national and local scene. Every GP practice in each of primary care trusts in the clinical network area has received an invitation to the conference and prompted a good response – even if people are not able to attend on the day, promoting the event has been an important awareness raiser for the CFS/ME and local CFS/ME services. There will be a report on how the event went in a future edition of Focus.

Which just leaves me to wish you all a Happy Christmas.

Louise.

Reference
Pemberton S, Elliott J (2006), Proposal for a structure for patient and public involvement, CFS/ME Collaborative