HSE Working Group 2018: Myalgic Encephalomyelitis (ME)

 2018 HSE Working Group: Myalgic Encephalomyelitis (ME) Terms of Reference:
 Purpose:
 Ø  Create a culture in which the concept of ME is understood
 Ø  Create a culture in which all in the HSE and associated services are required to manage those with ME in accordance with the standards specified in the National Healthcare Charter & the ME Policy
 Ø  Create a culture in which the HSE and associated services are held to account for any failure to practice the newly adopted culture
 Membership:
 

1.	5 x ME Consumers to share their expertise & knowledge about ME, research, management, resources, experience To represent demographics: a) Paediatric b) Adult c) Older Persons d) Carers e) Using PCCC homecare services
2.	Nominee from HR
3.	Nominee from ND QID
4.	Nominee from ND SCD
5.	Nominee from ND Primary Care
6.	Nominee from ND Mental Health
7.	Nominee from ND Acute Services
8.	Nominee from Director
9.	Nominee from Older Person’s Services
10.	Nominee from ONMSD/CSP

 Actions:
 Create a Policy for M.E. which clearly identifies the process to achieve the following: 1)     Adopt a set of Diagnostic Criteria giving a clear rationale to explain the choice. 2)     Collate a relevant, current, biomedical resource base of research for reference by professionals
 3)     Place M.E. under a relevant National Clinical Lead
 4)     Identify a National Lead for ME (a Consultant to specialise in ME)
 5)     Create a Clinical Care Pathway (CCP) for:     
 a)     Paediatric M.E.
 b)     Adult M.E.
To include all severities, mild to profound.6)     Ensure all trainees, both clinical & non-clinical, have the new ME Policy included in their training.
 7)     Identify a training process for all professionals currently practising to include:
 a)     awareness raising
 b)     expectations of practice
 8)     Create an expectation of research & a programme of research, a five year plan.
 9)     Provide accessible information & Consumer leaflets for ME which reflect the Policy provision.
 10)   Provide an accessible HSE website with information about ME for Consumers and professionals.
 11)   Identify a review date for the policy.