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

The first meeting of the M.E. Working Group took place on 16^th 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 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 The business of HSE Working Groups may not be published but I have been given permission to post  the Terms of Reference under which we are working.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• To submit a final draft Guidance for ME document and accompanying documentation to the independent Disability Services Governance Group for sign-off.  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.

ME visibility action outside Leinster House

Today, Tuesday 14th May 2019 a group of Myalgic Encephalomyelitis (M.E.) patients along with their carers, friends, family members and advocates will be holding a visibility action outside Leinster House on Kildare Street, Dublin from 11.30am to 2.30pm to highlight the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.

The name of this action is #Call4Change4ME

Here are some of the posters we will have on display to make the Government aware (again) 

of your continued fight.

We hope you can join us, but if you can't be there in person, can you please support us via social media?

• Instagram

• Facebook

• Twitter

Many thanks

* Above poster designs by Noreen Murpy.

Our demands in a nutshell.

 Read our press release HERE

Tags like these which give you a snippet into the

lives of people with ME will also be on display.

Many can be read on our Instagram Page

Following Recommendations for Action to Support those Living with ME, the HSE has set up a Working Group on ME.

Update May 2019 on
‘Recommendations for Action to Support those Living with ME’

Written/compiled by Christine Fenton 

Last September we posted ME Advocates Ireland founder member Christine’s story of her experience of Myalgic Encephalomyelitis (ME) & of her journey with the HSE acute & community services which resulted in an Independent Investigation. See HERE

This 2018 blogpost concluded with

‘Good news for the ME community:

The investigation report, gives thirty-three report recommendations, the three most relevant to the ME Community are:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME.  It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers.  To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs.  Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users to appropriately & adequately assess their needs.  There should be uniformity in the assessment models used in each community health area.

My sincere hope is that the implementation of these recommendations will result in a constructive partnership between Consumers living with ME & the HSE, as they learn to work collaboratively, to make life with ME a supported journey, with hope, as biomedical research continues to uncover the causes of ME & hopefully, in the near future, effective treatments.

In light of these recommendations there is the possibility of increased hope, an essential human need, for all those in the ME community.’

Christine Fenton third from left at the AV Room Presentation in Dáil in Jan 2018 with other members of MEAI

Today’s news:

The HSE has set up a Working Group on ME.

The first meeting will take place on May 16^th, 2019.

Christine says:

I believe this is a start, a step in the right direction for change to happen. 

We all need to take any opportunity the Working Group offers for Service User/Patient engagement forums to use our voices so the HSE learns to understand our lived experience and what we need from the HSE. 

This is the time for everyone affected by ME, children and adults, across all levels of severity, mild to profound, Carers, friends & relatives who see the devastation ME causes to speak out about the reality of life with ME at any and every opportunity available.

Finally, the HSE has turned an ear towards us, let us make use of this opportunity by using our voices.

Join us on May 14^th outside Leinster House or send a ‘tag’ which tells your story, let us use this event to cast off the cloak of invisibility the HSE & Government have shrouded us in for so long.

***************************

ME Advocates Ireland (MEAI) will continue to call on the HSE and the Government for change for ME until the needs of people with ME are met.

MEAI will back Christine all the way & hope the Working Group will finally open the door to enable us to receive the care we need.

M.E. Visibility Action, Ireland - #Call4Change4ME

M.E. Visibility Action  #Call4Change4ME

MEAI pressrelease:

Tomorrow, Tuesday 14th May 2019 a group of Myalgic Encephalomyelitis (M.E.) patients along with their carers, friends, family members and advocates will be holding a visibility action outside Leinster House on Kildare Street, Dublin, from 11.30am to 2.30pm to highlight the neglect and harm caused to some of the most seriously ill of all patients here in Ireland.

The name of this action is #Call4Change4ME

Many of these patients, some young children, are living lives shut away from the world in dark rooms, too ill to bear even the smallest interaction or movement. They simply would be unable to attend this event, but they will be represented on a display of information tags. The tags will give some information about themselves, where they are from, how long they are ill, etc. 

We hope that these poignant images will bring awareness to the Minister for Health Simon Harris TD, the HSE, the media, the general medical profession and the wider public of how utterly devastating this illness is to children as well as adults.

The theme of this year’s awareness event is ‘Invisibility’. There will be a mask-wearing moment during the Visibility Event where a group of attendees will put on masks to highlight so many of the invisibilities associated with ME.

The invisibility begins with the failure to use the correct International diagnostic criteria, – The ICC-ME, with the result that many people are given a ‘throwaway diagnosis’ of M.E. because clinicians are not following the proper route for testing. This does no favours to those with M.E. or those who may be suffering other conditions but get labelled incorrectly with M.E.

The invisibility continues with the lack of appropriate healthcare pathways, the lack of a national policy on Myalgic Encephalomyelitis, the lack of teaching on M.E. for GPs,  the lack of M.E. aware Consultant Specialists and the lack of other healthcare personnel who are trained in the complex nature of M.E.

Myalgic Encephalomyelitis is an acquired neurological disease (classified under G.93.3 of the WHO International Classification of Diseases) with complex global dysfunctions including pathological dysregulation of the nervous, immune, and endocrine systems and with impaired cellular energy metabolism. In the most severe cases, patients with M.E. are completely bedbound, unable to feed themselves and unable to bear any stimulation such as light or noise. Yet these patients do not have a care plan pathway available to them within our health service as there are no specialist/consultant services here in Ireland.

This appalling situation needs to be rectified and today is another step in our campaign to get appropriate medical services and a consultant led clinic that can carry out the appropriate testing needed to properly diagnose those with the condition.

This protest has been organised from the beds of some very ill people - people who will suffer greatly from the cardinal symptom of M.E. – post exertional neuro-immune exhaustion (PENE). Many of these patients will pay very dearly and may spend days, weeks and even months afterwards bedbound and dealing with a massive exacerbation of their symptoms.

We would be happy to talk to any media about the event and we would really appreciate any coverage you can give us, especially on May 14^th, outside Dáil Éireann.