The powers of the HSE

Deep breaths.

Re-emerging 2014
Sculpture by Corina Duyn, in collection of
Dzogchen Beara Care Centre

As you undoubtedly know, I have been fighting our Irish Health Care Service (HSE) Disability and Social Care Services for two years. My continued quest has been to obtain autonomy over my care.

My fight for justice has been highlighted on this blog; ME Advocates Ireland blog; Journal.ie, and most recently in the Irish Examiner in the lead up to the General Election. And yet the HSE often remains a “silent partner” in all of this.

Infuriatingly silent!

Yes, I had some good news a few months ago, when I was finally awarded an assessment from Disability Services. Until that time I was not being heard as my illness is not listed as a disability, while at the same time I obviously have a disability and receive support, and aids, from every other part of the HSE.

So, the assessment finally happened in October 2019. Twenty months after starting this journey in earnest. I was awarded 2.5 hours of Personal Assistance Support per week. The remainder of my good care package is still listed as Home Care. Trust me, there is a fast difference. PA hours mean I can leave my home with support.

Twice a week I am legally allowed to go for a walk with my PA support. I truly enjoy these short escapes from my walls. I can relinquish being a hermit for short spells of time.

But.

But my energy, or the weather, is not always in line with these scheduled escapes.

So, I asked the HSE, repeatedly, if more of my Home Care Hours could be transferred to PA hours.

Makes sense, doesn't it?

Especially as it is all Cost Neutral for the HSE: Same care agency, same carer, and same rate of pay. (My main carer was given the PA hours).

Changing Home Care hours to PA hours would give me autonomy over my care, over my life.

Personal Assistance, according to Independent Living Movement Ireland means: “... PA to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, support in the workplace or socialising.”

The HSE ignores this request.

No acknowledgement of my emails since December. Nothing. Not a word. It drives me bonkers.

They also have not responded to the other issues raised during the Disability Services Assessment (October): do I now qualify for respite care, can I access psychological care (much needed after this nonsense of dealing with the HSE…), and access support from a social worker? (I fell, or still fall, between the cracks of the various ‘boxes’: I was/am not disabled (?), and not over 65. There is no plan for the chronically ill people under 65 years of age.)

Nothing. Not a word.

I find these silences abusive.

Every time I tell someone about my struggles to have autonomy over my care, over my life, I am in tears. Everyone seems baffled by the length I have to go through to be heard. I am in tears while writing this.

The behavior of those in power borders on being abusive. Their power they have over my life is abusive.
They don't seem to understand any of this.

I am uncomfortable with breaking the HSE rules of leaving my home with my carers. I don't want to get into trouble. I don't want my carers to get into trouble. My wonderful carers who totally understand my situation and would do anything in their power to give me the life I wish to live. I don't want to risk losing my much needed care, by breaking these ridiculous rules.

So, I ask again and again for clarification.

Situations I find myself in:

Wanting to cast my vote during the General Election: Do I really have to break the HSE rules to exercise my democratic right to vote? My PA hours are during the week. The election was on a Saturday.

At times I really need to be able to look at a different view. I spend 99% of the time at home. Request for eligibility to respite has not been answered.

Friends kindly agreed to take me away for a few nights. As an experiment I made it to Youghal. Half hour from here. But, during these two days I had no access to personal care, so am dependent on my kind friends to help with basic stuff. Not easy. Not right. Friends should be friends, not act as carers.

Next week I will be away, I hope ! for another few nights. But on this occasion I really need to have access to care.
Surely I should have the right to avail of having a bath while there (a novelty), and not having to be pulled out of it by my kind friend. I am there on my birthday. Wouldn't it be lovely to be clean? 

I love the opportunity to float in the pool. Something I haven’t been able to do for years. As I have no idea if I am able for this, I really would appreciate to having my PA there, to pull me out, to help me get dried off and dressed. Or probably to be helped into bed as I imagine it will take a lot of energy… I feel confortable with my carer/PA as she has helped me with personal care for over a year.
Surely I should not have to ask for this support from my friend?

For other short possible escapes, I visited nearby Glencairn Abbey Guesthouse last week (will write about that another day). This wonderful, loving, fully accessible location could be a home from home, for self-funded respite days. 

I just need to have my care transferred. Simple, one might think…

Having access to more PA hours would solve the problems. As I understand it PA hours is to support me inside and outside my home, so surely I can ask for a PA to support me wherever I am? (Within reason).

As there has yet been no response from various people in the HSE if my care hours can be changed to PA hours, I asked if my Home Care hours (which obviously includes personal care) can be transferred for a few days to other locations: same distance for the carer, who is more than happy to do this for me.

No response from those in power in the HSE. The care agency didn't know. My Public Health Nurse totally understands and supports me, but has no power to make these changes in my care. She tried.

Do those in power not realize the unnecessary stress they continue to cause? That having access to a carer/PA, wherever I am (within reason) would make such a difference in my life? Do they not understand how they in a way keep me a prisoner in my own home? Do they not understand that it feels unreasonable to have to ask permission to leave one’s home? Do they not understand that if one requires support at home, one needs it too when escaping the house for a few days?

I feel that I am not asking for the impossible.

All I am asking is to have autonomy over my life.

All I am asking is to have the label of my care and be given the freedom to live the best life I can. It is restricted enough as it is.

And if this is an unreasonable question, please let me know why!

Until they respond I have to take Very Deep Breaths to stay sane.

Strength in fragility

Coming face to face with one’s own fragility is certainly not easy, but maybe there are ways to go beyond this tough reality.

As my health has deteriorated further over the past two years, I have to yet again come to terms with actions I can no longer do. Previously manageable activities, such as going out on my mobility scooter, have not been possible since autumn 2017. Also actions like having a shower independently, getting dressed, preparing meals, and even doing my art, are no longer within my reach.

In the early years of life with M.E. 20 years ago, these were not possible either, but over the years I had seen a slow recovery to the point I could, kind of, look after most of my basic needs. This all changed again from 2012 onwards as a result of another severe viral infection from which I never recovered. To be honest fulfilling a very, very long held dream to attend college one night a week in 2013, and traveling to the UK in 2018 to give talks about puppetry and disability most likely did not do my physical health much favours. Both made me quite ill.

But. 
I feel the need to keep living, to not totally succumb to being ill.
I am more than M.E.

I am more than my disability.

I am still me, and find strength in my fragility.

Choices

The Disability Studies course at UCC (2013) was a logical progression in my intellectual as well as creative development. I loved the studies. I loved being at UCC. I loved the world it opened up for me. My assignments, where remotely possible, were focused on disability arts. I read so many books, then and since by others who found themselves (suddenly) living life as a disabled person. I was very interested in those writers who explored invisible chronic illnesses, like M.E.

Many quotes from the books I read then and subsequently made it into my Artist Book ‘Into the Light’. (See  HERE for author/book list of references used in my book)

The studies also indirectly lead to facilitating the Life Outside the Box Disability Arts Puppet Project with my fellow members at the IWA. This project brought the invite to give talks at the first ever Broken Puppet Symposium on puppetry, disability and health in 2017 in Cork. This in turn led to invites to give talks in the UK the following year. Over a month I met some amazing puppet makers and puppeteers, and others involved or interested in puppetry and disability. Although I had constant support from friends, this journey was physically too much. Way too much. But it was a journey of a lifetime, and I am glad I did it! My creative thought process has evolved as a result of this adventure.

 Budget management

I often make the analogy of having the equivalent of €100 in the (energy) bank per day. Staying within this budget is safe. Spending a bit less, will be a saving, a storing up of a tiny bit of energy. But going over the limit one ends up in overdraft. Overdraft is expensive.

Using only half the allowed budget the following day can pay the overdraft back.

Adding more and more to this overdraft by keeping going, the ‘bill’ becomes so big that it would take months and even years to pay it all back.  Being in a constant overdraft can lead to bankruptcy. Those two big decisions of college and travel lead to my partial bankruptcy.

But.

There is a Big But.

These were conscious, carefully evaluated choices I’ve made. Yes I was aware of the risks, but also looked at the benefits. Taking strength over fragility. Physically it was not beneficial. However, I most definitely benefited from both in terms of my mental wellbeing and my creative development and for assuring contact with the world outside my four walls. 
Unfortunately there are other elements which lead to the most recent decline in health: a stroke like illness a year ago, which affected my speech and swallowing, and further lowered my mobility, and increased the need for care. But the two-year long fight with the HSE (our health system) to obtain support to remain living independently at home, and having the right to leave my home with support had possibly a much bigger impact.

I finally got results, but I am convinced that this senseless battle with the HSE caused further decline, mostly on an emotionally and mental level, but as all our health goes hand in hand, it probably also impacted on my physical health and ability. Every activity takes energy, including mental activity.

Fragility 

This senseless battle showed the absolute fragility of my existence. The fact that the care system is set up in such a way that I, as ‘client’ have no real say over my care: who comes into my home, when and for how long, and what tasks can be performed.

I lost the autonomy over my life.

My health at this point in time makes me pretty much housebound. The reality is that I cannot safely leave my home on my own, or have the ability to do so. I also had to adapt to the fact that I require help with very personal care needs.

After two years fighting the HSE I now have a seven-day a week Home Care package consisting of good hours. A few weeks ago I was finally ‘awarded’ the right to also have support to leave my home with support. 

This story can be read on the ME Advocates Ireland Blog and in short in Irish Examiner  newspaper.

Along the way I have indicated to the care agency (who provides the carers, but is not in charge of the amount of hours) which carers I am comfortable with, and those I would not like to have enter my house ever again. Taking back a little bit of control.

All this fighting for basic care and basic living takes huge resilience to keep speaking up, and standing up for my rights. It took all my writing energy to highlight the ridiculous situation I found myself in.

But!

There is a But again.

Strength

Going public with the HSE struggles lead to some amazing comments received from total strangers about my writing ability, for example: 

“I find your writing on disability/illness give a really good insight into living with a condition, even relatable for someone who doesn't. Other writers rarely achieve this. They lack compassion for the reader.”

Now the main HSE issues are resolved (few minor things to sort out) I hope to start writing again for fun, and to share the other stories of (my) life with you. I hope I can live up to the kind quote above. 
Today I meant to write about an achievement of a different kind… to sit on a beach… but that will now have to wait till another day.

Thank you for your continued support and friendship

Corina