On Wed 4th December 2019 members of ME Advocates Ireland (MEAI) met with Minister for Health, Simon Harris TD.
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| Declan Carroll, Irish M.E. Trust with some members of MEAI: Christine Fenton, Rachel Lynch, Joan Byrne |
Background
We had requested this
meeting in May 2018 in order to impress upon the Minister what the real lived
experience of people with M.E (PWME) is in Ireland today.
Many of you will know that
we have consistently lobbied the HSE and Dept of Health in recent years for
better medical education, adoption and use of the ICC-ME diagnostic criteria,
better supports for PWME, removal of inappropriate treatment protocols (CBT and
GET), the need for expert medical supports at Consultancy level, the need for
appropriate paediatric supports including transition to adult services, etc.
We have raised numerous
Parliamentary Questions through our TDs and have succeeded in raising the
profile of Myalgic Encephalomyelitis in the public sphere. Many of the
responses to our PQs by the HSE gave incorrect information about M.E. and this
gave us an opportunity to challenge that misinformation within our health
service.
We have also organised
several visibility events outside Leinster House over the last number of years
and this has resulted in us building up good relationships with many
politicians and key influencers and we would like to thank all M.E. patients,
carers, family members and friends who supported these events in any way.
HSE M.E. Working Group
Alongside all this, an independent
investigation recommended the HSE create an M.E. Working Group. (We have
blogged about this previously). Through
the HSE’s ‘Engaging Patients & Families’ programme, ME Advocates Ireland (MEAI) members expressed
their interest and were accepted onto this Working Group. MEAI members ensure we
are referencing international best practice to ensure comprehensive guidelines
result from the work of the Group to establish what expected best practice
should be for those living with M.E. in Ireland.
The investigation recommendations
about M.E. essentially became the Working Group ‘Terms of Reference’ which
define the remit of the Group.
The importance of including
both Irish M.E. Charities was upheld by the MEAI members at the first meeting in
May.
Meeting with the Minister for Health
We were finally offered a
meeting with the Minister for Health, Simon Harris TD, on 4th December and the
following gives you an idea of what we discussed at that meeting. Also
represented at the meeting were officials from the HSE and the Dept of Health
and Noel Rock, TD for Dublin North West.
The Minister was very
welcoming, responsive and interested in hearing what we had to say and asked
some very key questions, giving us the opportunity to further expand on many of
the issues raised.
The following key areas were raised and discussed at the meeting:
· Diagnostic
criteria and the need to use the International Consensus Criteria (ICC-ME) to
avoid the potential for misdiagnosis amongst the patient group.
· The
lack of education amongst GPs and other health care professionals about the
aetiology of M.E. The role of the ICGP in ensuring appropriate education and
training is made available to GPs.
· The
disadvantage patients experience as a result of not having available expertise
to treat and support them.
· The
need for the HSE to operate from consistent, correct information on M.E.
· The
dangers of real harm being caused to people with M.E. as a result of recommending
inappropriate treatment protocols such as Graded Exercise Therapy and Cognitive
Behaviour Therapy
· The
need to end inappropriate referrals to psychiatry.
The disadvantage experienced by PWME as a result of ‘dismissive attitudes’ often resulting in them choosing not to see their GP or Consultant or even attending the Emergency Department.
The disadvantage experienced by PWME as a result of ‘dismissive attitudes’ often resulting in them choosing not to see their GP or Consultant or even attending the Emergency Department.
· The
case for an M.E. specialist consultant.
· The
issues children with M.E. are faced with in Paediatric Services.
· The
role of the M.E. Working Group in ensuring that the HSE carry out a comprehensive
International Literature Review of research, as well as including patient
experiences, to reduce the HSE reliance on the UK NICE ME/CFS guidelines and
the review of those guidelines due next year. In this respect the Minister
stated his clear support for the M.E. Working Group. The Minister offered some
suggestions about possible measures to safeguard M.E. patients in the interim and
agreed to follow up on these.
A powerful video message from severe M.E. patient Noreen Murphy was played to
the Minister.
The Minister asked some very
key questions and asked for some time to reflect on our meeting and committed
to meeting us again after the next M.E. Working Group meeting in January 2020.
We look forward to meeting
him again in the New Year and following up on some of the issues discussed.
Thank you
to all our advocates whose hard work made this possible. We have something now
to build on and we continue to be committed to ensuring that M.E. patients in
Ireland are safe from harm and are treated with dignity, respect and correct
knowledge by all within the healthcare system.
Piece written by Joan Byrne, ME Advocates Ireland (MEAI)
