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

ME patient/advocate Corina Duyn reflects on the challenges of having 

Disability Services in Waterford accept her as having a disability.

Corina Duyn

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 fact that I was in my own surroundings enabled me to rebuild my totally altered life from scratch. I was housebound for years, only occasionally making it outside of my door, mainly for medical appointments. A challenging time, to say the least. But I did not have to worry about where my food was going to come from, how I would have clean clothes, or a clean environment. My personal care needs were being met.

I lived, survived, existed, by having an open mind. 

I looked and learned from nature. I explored my totally changed life through my creative mind. I lived every moment as it came. I dealt with the immense physical pain, the total and utter exhaustion, the very frequent relapses, happening out of the blue, or due to doing a tiny, tiny bit more than I was capable of. For a while I lost the ability to read or write, or to hold a conversation. Several health scares and hospitalisations accompanied this time. Slowly, there was a slight increase in my wellbeing. I thought I would recover. Although the statistics were, and are, against me, there was always hope.

In 2006 I met my partner, and I was proud to give up the home help support. We lived off my Disability Allowance. A very, very basic existence, but I felt that I had moved forward. Care-free in a way. It took until 2015 to secure the Carers Allowance. At this time my partner was living a few doors down the road. Living with chronic illness/disability and being housebound most of the time, is not easy in a relationship, especially in a tiny house. At this time we had two small houses allowing us each a place where we could be alone and creative. A win-win situation. Unfortunately our lives moved into different directions, and I find myself living alone again, and without a carer. As a result I once again had to embark on asking for HSE support to help me live independently. This has become a daily battle.

Although my health has deteriorated again over the past six years, I am quite comfortable in my skin (as the saying goes) to be spending a lot of time in solitude. I can entertain myself quite happily by reading, looking out the window, taking photos of the birds, marveling at the changing seasons, coming up with creative ideas, which might or might not come into being. I love to write and create, when I can. I love being out in my garden or greenhouse and I enjoy the visits or phone-calls from friends and family. Dealing with the HSE however brings about immeasurable stress and impacts negatively on my mental and physical wellbeing.

Over the two decades I have had many difficulties trying to access appropriate care, especially outside of primary care. To protect myself from becoming overwhelmed by these huge challenges, I established ways to live the best life I can within the circumstances. As well as using my writing and creativity to understand my own changed life, I used my creative voice to bring about change. This year I became a proud founding member of ME Advocates Ireland. Speaking up about my personal circumstances and hoping to be a voice for many others in my situation who are not as able as me to put these challenges into words. For them, and me, I will continue on this path to bring about change. 

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.

This is complex.

I have been asking (again) since December 2017 to be assessed by HSE South Disability Services with responsibility for Adults with Physical and Sensory Disabilities, in order to obtain a Personal Assistance (PA). This would allow me to have autonomy over my care. But ME is not considered a physical disability by this office. They suggest that my GP and the primary care team should provide for my care and to contact the Public Health Nurse to submit an application.

The Public Health Nurse fills in the very basic Barthel-index assessment form, which does not take into account the complexity of living with ME.

The application goes to the Home Support Office. But as this office has no remit for the under 65s (unless terminally ill), the application goes to Disability Services.

But as Disability Services does not accept ME as a disability …

And round the circle goes.

Nobody takes responsibility.

To make this picture even more bizarre, for all the other parts of the HSE I am disabled.

I have a Primary Medical Cert and receive the Mobility Allowance (both only awarded in extreme cases of physical disabilities).

I am on the Physical & Sensory Disability Data base.

I have a powered wheelchair provided by the HSE. I have several other mobility aids provided by the HSE.

I am on Disability Allowance.

My house is adapted with an accessible shower and a ramp into my front door.

I had disability support while attending college.

I give talks about puppetry and disability all over the world (mostly via Skype).

People who see me in my wheelchair, who see me struggle at home, or when occasionally outside my house are bewildered when I share this warped thinking of the Disability Service’s logic that I am not disabled.

As no answers came my way, I went the Have Your Say route at the end of May, as suggested by a staff member of the Disability Services office.

This has not brought a solution. It brought tears.

After many struggles I now have 45 minutes of home support on weekday mornings, and half hour in the evening. I am deemed eligible for weekend hours (I am ill/disabled seven days a week, not just 5) but there is no funding available for this.

As it stands now, the HSE is not supporting me in any way to exist outside of my house, to go to appointments, or to bring food into my house, or to have enough home support hours to prepare food.

PA support is still being denied.

I looked at alternative ways.

Can I pay for enough care myself? Possibly. For a few months I can dig into my savings, but that is not sustainable on a long-term basis.

I talked with the EmployAbility Office. Can I become an employer and receive financial support to employ a PA to help me with my creative work?  My creative work is connected to my whole being; it is the essence of me. There is no support.

I am not asking for more than I need from the HSE.

Asking for help is admitting I am in need of help. My situation as it stands is a very vulnerable position to be in.

As illness continues to throw more challenges my way, I have not left my house independently for the past year. A scary thought.

Losing one’s independence is the hardest part of being ill. The hardest.

There have many weekends, and full days where I am totally on my own. Including during a severe relapse, when all I could manage was to move from bed to wheelchair, to recliner, and back to bed. When I needed to go to the bathroom, I also made my way to the kitchen (a few meters away) to get some more water, or a snack. I have my Personal alarm button on my wrist, and grateful for friends who are on the other end of the phone-line, but I cannot expect my friends to become my carers.

I feel it is a human right, a human need, to have autonomy over my care. This is something that the HSE Disability Services does not seem to understand.

This struggle to secure care has taken a huge toll on my mental and physical wellbeing. My usual state of peace of mind can my shattered in seconds when I think, or talk about the struggle I am facing with Disability Services not acknowledging my disability.

I am in tears. In seconds.

I am not fighting the HSE to get something more than what would allow me to live well for the rest of my life. To not have to worry.

A few days ago I had to decide how to use my 45 minutes of care.

There was no prepared food in the fridge or freezer. I had no clean laundry left as I have been away on a care break. I had three days of dishes piled up since my return for this care break; tubs, and bowl, cutlery and cups. And I desperately needed a shower.

I was in floods of tears, even now as I write this, on trying to figure out what was the best way to use my 45 minutes of care.

I also had to find a way to get my food shopping done.

Nobody should have to live like this.

In my fight my aim is not to have the HSE admit they are neglecting my care. I don't want to be an antagonist. I am not looking for a settlement. I am not looking to go to court.

I am looking at working with the HSE, to have them look at the discrepancies, which exist in the different HSE Community Health areas in the country.

I would like them to see what everyone else notices… that you cannot be disabled and at the same time not be disabled.

I would like to work with the HSE to show a solution, not cause a problem.

I would like to make sure that the immense struggle I am facing, and at many times wanted to throw in the towel as it became too much, that my fellow patients with ME or other long terms illnesses which have resulted in disability, don't have to go through this mental trauma. Because that is what it is. Trauma.

I hope that the words spoken by politicians and researchers will become a reality. For example: 

“Minister for Health Simon Harris TD emphasizing importance of clear communications with patients to build trust in our health service #NPSO2018”

Twitter: National Advocacy Service Ireland 18^th October

 “The central message of my latest report can be summarised as follows: we need to include the rights and needs of people with disabilities into healthcare systems #CRPD”

Twitter: Catheline Devandas - UN Special Rapporteur on the rights of persons with disabilities, Geneva.

Indeed.

Thank you for taking time to read this, and I hope that the next update will be one of joy - of common sense prevailing.

Corina Duyn

October 2018

Corina Duyn is an artist, writer and puppet maker. She can be contacted via her website & blog www.corinaduyn.com where you can also see her creative work and books. She is one of the founding members of ME Advocates Ireland  www.meadvocatesireland.blogspot.com