About Myalgic Encephalomyelitis (ME)

Thursday 30 May 2019

Update on HSE Working Group on M.E. - Terms of Reference

The first meeting of the M.E. Working Group took place on 16th May 2019.
For those who haven’t read previous blogs this Working Group has come from a recommendation from an Independent Investigation into my complaint to the HSE
about my HSE journey with M.E. 

Christine Fenton HSE working group on M.E.
Christine Fenton at her home surrounded by HSE files

 The business of HSE Working Groups may not be published but I have been given permission to post  the Terms of Reference under which we are working.

I feel positive that there will be opportunities for your voices to be heard, all ages, all severities and for those of Parents & Carers as well.

I hope when that time comes you will make use of the opportunity to make clear your experience of ‘life with M.E.’  so that the Working Group can make include your voices in the process.

        Community Operations – Disability Services
     Myalgic Encephalomyelitis (ME) Working Group
Terms of Reference

1.     Purpose / Aim:

 To develop a national guidance document for ME:

  • To provide evidence based information to health and social care professionals to improve the care and management for people with ME.
  • To provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE to people living with ME and their carers.
  • To develop formalised protocols for people living with ME.
  • To develop/adapt a standardised generic assessment tool that can be used with people living with ME to identify, assess and appropriately address their needs.
  • To develop guidance for education modules on ME. 

2.     Roles and Responsibilities

2a. The role of the Working Group is to:

  • Meet with people living with ME to find out what their views are on the topic.
  • Review and research any existing documents and work in progress around this area – we will be supported by a HSE Librarian for this work.
  • Develop a Guidance Document that will meet the aim and purpose of the group.
  • Identify where subgroups are needed to develop specific parts of the Guidance Document.
  • To consult appropriately with people with ME in regard to the content of the document and take into consideration their feedback as part of the development.
  • To consult and update the National Disability Operations Team (NDOT)
  • To submit a final draft Guidance for ME document and accompanying documentation to the independent Disability Services Governance Group for sign-off.  

 2b. It is the responsibility of the nominated lead/Chair to ensure that:

  • The Working Group is kept updated and that quarterly reports are submitted to the NDOT;
  • The agenda and any relevant papers that need to be read prior to meetings are circulated in advance of meetings/ teleconferences.
  • Minutes are documented at each meeting and circulated to members within a week of the meeting being held for feedback.
  • Minutes are approved and signed off by the chair and the Working Group at the next meeting.

2c.  It is the responsibility of the members to ensure that they:

  • Prepare for, and attend as many meetings as possible;
  • Respect the confidentiality of all information shared and share information only as agreed by the Working Group;
  • Provide feedback on the minutes to the Chair within one week of them being circulated;
  • Complete agreed pieces of work;
  • Work collaboratively together and with others as required to develop an easily accessible group of resources that are available to any service.  This may include advising regarding how these resources will be accessed and kept up to date.

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