Urgent Call to Action for the Creation of an HSE Protocol for Severe Myalgic Encephalomyelitis (M.E.)
A Call to Action was launched during M.E. Awareness Month 2024. ME Advocates Ireland (MEAI) in association with the M.E. community and others drew up the Call to Action.
For those with Severe M.E., the consequences of the illness are particularly devastating & incredibly complex, with multiple unalleviated symptoms, all ability denied & reliant on extensive 24 hour expert support for even basic daily activities.
Despite the severity & prevalence of M.E., there is a glaring absence of a specific protocol within the national health agency, the HSE, to cater to the complex needs of individuals with Severe M.E.
We are writing to the HSE as patients, carers & advocates on behalf of individuals suffering from Severe M.E., urging the establishment of a dedicated HSE protocol to address the unique needs of this at-risk patient population.
ME Advocates Ireland (MEAI) is supporting the call as people with Severe M.E. are at higher risk of being harmed while in hospital or in other care settings and require specialised support.
A protocol would provide information to help doctors and other healthcare professionals to manage the reasonable adjustments essential in the care and management of individuals with Severe Myalgic Encephalomyelitis (ME), and to facilitate the plan for their care while in hospital, for their hospital discharge and for the care that follows the discharge.
The reality is that harm, deterioration and death in cases of Severe M.E. are preventable but only if individuals are cared for and supported appropriately, which makes it incumbent that the HSE takes steps to implement the recommendations in this Call to Action.
We are asking you to please support the Severe M.E. Community's Call to Action by signing their Open Letter here.
You can read a summary of the ME community's Open Letter if you are unable to read the longer one; please open the summary here.
Three Notes for You:
1. You need to verify you signature in the email account you used to sign the Open Letter
2. Our Open Letter was created by our M.E. community who have provided an extensive evidence base relating to healthcare issues among the M.E. and Severe M.E. community in Ireland, through feedback conveyed to us of their personal experiences via various channels. Thanks to our M.E. community.
3. Our letter builds on an original piece by ME Foggy Dog & Stripy Lightbulb to address the issues around the lack of protocol for those with Severe M.E. in Ireland. Thanks to ME Foggy Dog and Stripy Lightbulb.
Update re ME Community's Open Letter Campaign
A link to the ME community’s open letter was included in a cover letter signed by 6 members of the ME community (mostly individuals with Severe ME) and sent by email from one member of the ME community yesterday to the CCO, Dept of Health, Minister for Health, Minister for Disability and others. We also received a copy.
Here is a copy of that Cover letter with a link to the Open Letter below.
Re: Open Letter by the Myalgic Encephalomyelitis (ME) Community on behalf of individuals with Severe ME
To Dr Colm Henry, Chief Clinical Officer of the HSE,
We are writing to you as concerned citizens on behalf of individuals living with Severe ME to draw your attention to inadequacies and gaps, current and historic, in health and social care for people living with Severe ME, and to ask for the immediate establishment of a dedicated HSE protocol to address the unique needs of this at-risk patient population.
For those with Severe ME, the consequences of the illness are particularly devastating and incredibly complex, with multiple unalleviated symptoms, all ability denied and some individuals reliant on extensive 24-hour expert support for even basic daily activities.
Despite the severity and prevalence of ME, there is a glaring absence of a specific protocol within the HSE to cater to the complex needs of individuals with Severe ME. Consequently, many Severe ME patients are left without diagnosis and adequate medical attention, facing significant barriers to accessing appropriate care and support.
People with Severe/Very Severe/Profound ME face significant deterioration as a direct result of inadequate, inappropriate, and often harmful management in hospitals when they are admitted to ED or as in-patients.
Many individuals at the severe end of the ME spectrum are unable to attend medical appointments or they are afraid to go anywhere near a hospital or other care setting or even to their GP and will not access community services as they know how challenging it is to obtain services vital to their needs and how badly their illness will be impacted.
The most severe forms of ME evidence complex issues such as malnutrition as a direct result of neglect, stigma, and poor knowledge base in hospitals.
Severe ME-associated malnutrition can result in death; we know of ME patients in the UK who have died from malnutrition. 27-year-old Maeve Boothby O’ Neill’s death in October 2021 is one such case. Recently, a Prevention of Future Deaths report published after Maeve’s inquest in the UK highlighted ‘non-existent’ care for those most severely affected by ME, outlining the need to strengthen care and research.
We have spent several months of this last year running an Open Letter campaign to highlight the issues affecting our Severe ME community. This Open Letter has been signed by over 1000 supporters including many from our ME community.
In the first section of our Open Letter, we have referred to the specific issues that affect Severe ME patients when attempting to access appropriate healthcare to meet their needs, and in the second part of the letter we have given some thought in our collation of suggested solutions to resolve those issues.
We ask that you please give the Open Letter some consideration, and we look forward to your prompt response and plan for action on this matter.
Open Letter:
Yours sincerely,
XX, Severe ME Patient
XX, Severe ME Patient
XX, ME Patient
XX, Severe ME Patient
XX, Mum & Carer to Son with ME (Paediatric - Adult ME)
XX, Severe ME Patient
On behalf of the Severe ME Community and their supporters.
(we have anonymised names as we currently do not have permission to share those)
With Thanks
Many thanks to the individuals who behind the scenes helped edit and fine tune the Open Letter in recent days ahead of it being emailed to the HSE, Department of Health and others.
Thanks also to the six signatories who signed the cover letter to the CCO Dr Colm Henry on behalf of the ME community and to the person who sent the email.
Thanks to every single supporter for supporting the community’s Open Letter campaign by signing and sharing the Open Letter.
1083 individuals have signed the letter since it was launched in May last year.
Thanks you all.
Next Steps
ME Advocates Ireland (MEAI) plan to send our own letter by email to the HSE and Department of Health and other relevant individuals and agencies to support the ME community’s Cover Letter and to endorse the community’s Open Letter.
Thank you for your support
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