The struggle to gain adequate care while living with Myalgic Encephalomyelitis (ME) - ME Advocates Ireland

[Sly Saint]

"
ME patient/advocate Corina Duyn reflects on the challenges of having
Disability Services in Waterford accept her as having a disability.

I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again and my health has deteriorated.

Not anticipating that I’d be ill for so long, and that my illness would so quickly result in disability, I initially received care from friends, and lived for one month with my brother and family in Kenmare. Returning to Lismore, I looked for support at home.

I was told that home help (as it was called in 1998) was for the over 65s only. Local council representation secured me a few hours of care per week. Having several severe relapses in which I found myself totally paralyzed, leading to several hospitalisations, my home help hours were increased to seven days a week, up to 4 hours a day.

This meant I was able to live in my own home, and not be taken into care.
I am immensely grateful that this intervention was presented to me by the HSE. As my GP at the time suggested, if I was taken into the local nursing home for older people I would have died. "

The HSE system of allocating care hours has changed dramatically over the past years.
Previously the Public Health Nurse made judgment about the level of care required. Now this is done through a central allocation system where someone in an office who does not know me personally makes the decisions. Of course there is also less funding available.

Having a diagnosis of Myalgic Encephalomyelitis (ME) makes it all the more complex. The HSE has not yet established a clear pathway of care for people living with ME, like there is for example for MS. Many people with ME are housebound, or even bedbound, and many live with much more severe disability than those diagnosed with MS. Yet the clear pathway of care does not exist for us. ME has disappeared from the HSE website, awaiting new guidelines.

My current very real challenge is that I am in need of care. I need support with the most basic needs of having a shower, having my food brought in, having food prepared, having my household chores done, to be supported to occasionally leave my house, as well as to go to GP or hospital appointments, etc. In short, I need help to live.

full blog here:
https://meadvocatesireland.blogspot.com/2018/10/the-struggle-to-gain-adequate-care.html?m=1

 

[Andy]

Merged thread

I HAVE BEEN ill with Myalgic Encephalomyelitis (ME) for 20 years.

But it is only in the last year, and especially in the past six months that my most basic needs are not being met – at a time when my illness has become more severe and my health has deteriorated.

Back in 1988 when I first became ill, I didn’t realise it would result in a long-term disability and initially, I received care from friends and lived for a month with my brother and his family in Kenmare.

Then I returned to my own home in Lismore and looked for care support. I was initially told that home help, as it was called in 1998, was for the over 65s only. A local council representative helped to get me a few hours of care per week.

https://www.thejournal.ie/readme/no...eed-care-to-live-independent-4327945-Jan2019/

From the author

 

[Invisible Woman]

Some good comments below the article.

This continually fighting over every tiny scrap of care that people need is so counter productive. Especially with conditions where the effort involved in trying to deal with the authorities exacerbates the underlying condition. Ultimately, it seriously reduces the sufferer's quality of life and leaves them needing more care and resources - not less.

Counterproductive all round. Not to mention cruel.