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The
Chief Clinical Officer is supporting the development of a Clinical Guideline
for ME
A
Clinical Guideline Development Group has been established to develop the
Clinical Guideline in Ireland
1) How this was achieved
2) What you can do to make a difference: ME Advocates Ireland (MEAI) National ME Survey
3) HSE letters about the Clinical Guideline:
·
to inform you
·
to inform your
Doctor and Health Professionals
1)
How this was achieved
September 2018:
MEAI reported that after an independent investigation
resulting in the Culliton/O’Malley Report the HSE received recommendations
which were expected to bring change for those with ME by establishing a working
group to develop a national guidance document for ME.
http://meadvocatesireland.blogspot.com/2018/09/
May 2019: An HSE
ME Working Group began.
It was interrupted by Covid and did not reconvene after
August 2020.
March 2021: MEAI
Advocates continued to receive concerns from across the country.
Joan, Moira and Christine submitted a complaint to the CEO’s
office about:
The continuing lack of national Clinical Guidance and
knowledgeable care for those with Myalgic Encephalomyelitis, Adult and Paediatric
services across all Hospital Groups and Community Health Organisations.
1st April 2021: The Chief Clinical Officer’s (CCO) General
Manager acknowledged the complaint
May 2021: We began
a series of comprehensive meetings about our complaint took place across many
months.
We
approached a number of people who recorded their experiences of the reality of
life with ME so that we could share these with the CCO’s office.
We made clear to the CCO’s office that action was needed
which resulted in change and improved evidence-based care in both acute and
community services for those living with ME so that we receive the quality of
care which the National Healthcare Charter commits to.
https://www.hse.ie/eng/about/who/complaints/ncglt/toolkit/complaintsofficerstoolkit/national-healthcare-charter.pdf
Whilst it has taken time, MEAI’s complaint and ongoing engagements
with the CCO’s office since April 2021, in combination with Parliamentary
Questions and letters from other groups in recent months, the result is the CCO
has committed to creating a Clinical Guideline for ME using the HSE’s ‘PPPG
Framework’ a recognised structured process for writing Clinical Guidelines and
policies.
MEAI have repeatedly emphasised that the Clinical Guideline
Group and the implementation process should commit to the following principles:
·
That
the Clinical Guideline Group will engage with patient representatives and the
ME community to:
o
understand
the problems we face
o
work
with us to create solutions which will meet our needs in acute and community
services.
·
That
staff training and information for staff, adults and children with ME will be developed
based on the content of the Clinical Guideline.
· That the process to create and
implement the Clinical Guideline to ensure improved Service User experience clearly
evidences the patient public partnership at its best.
2) What you can do to make a difference: MEAI
Survey
Many thanks to you who have completed and returned surveys.
·
If
you have not returned your survey please make it a priority.
o
Return
surveys by post to: MEAI, C Fenton, Derrybeg, Lisserlough, Via Boyle,
Co. Sligo, F52 XF65
o
Return
electronic surveys to: meaisurvey2021@gmail.com
·
If
you are unable to complete all parts of the survey please:
o
send
what you have been able to do
o
write
or record the experience which most stands out in your mind and send it to us
All contributions are valuable and will be included in the
feedback.
If you would like to request a Survey Pack or have any
further queries please email the survey email address at: cfmeaisurvey2021@gmail.com
or
contact one of the survey
coordinators using the messenger button on the ME Advocates Ireland Facebook page.
Kind Regards,
MEAI Team
3) HSE letters about the Clinical Guideline
· Letter to inform you
· Letter to inform your Doctor and Health Professionals
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