The Barriers We Continue to Face while Living with Myalgic Encephalomyelitis (ME)

It has been just over a year since I wrote about the challenges 

of gaining adequate care to live independently in my home. See here

A lot has changed for the better, 
but the main issue of obtaining PA Services to be supported to leave my home
 has not been resolved. (Yet...)

To recap

In short Myalgic Encephalomyelitis (ME) is not on the Waterford Disability Services approved list of disabilities. I was thus not eligible to get an assessment for Personal Assistant (PA) services.  However I have a Primary Medical Cert, Mobility Allowance, a powered wheelchair from the HSE (our Irish Healthcare System), etc. etc. and my house is fully adapted for wheelchair use. After many emails, and a request from my Public Health Nurse, I did have 5 mornings of 45-minute home care. This was totally inadequate.

After I wrote my account of this senseless and challenging struggle to request to have autonomy over my care the Journal.ie online newspaper took on my story.  Their edited version was scheduled to go out during the Christmas/New Year period. As it happened, I ended up in care the days after Christmas.

Taken into care

I had flagged various departments of the HSE to the fact that there simply was not going to be enough care over the holiday period. Although deemed eligible for weekend care, they kept telling me that there was no funding for this. No weekends mean no Bank Holiday care either. Over the two weeks around he holidays I would have 4 mornings of 45-minute care. Eight days of none. Nothing was done to prevent the inevitable. I became ill a week or so before Christmas and ended up being taken into a local rest home for the elderly the day after Christmas. A totally unsuitable setting for many reasons.

Both the article in the Journal and the blog post written by my ME Advocates Ireland colleague Moira about being in care, gained a lot of attention on social media. They prompted the HSE into action and my care package was increased to twice one hour of daily care, seven days a week.  After nearly two weeks in care I returned home.

Health in decline 

My health had taken a big dip. Over the coming weeks my care package was increased to slightly longer hours in the morning. By February I was so ill that I had great difficulty speaking. It was as if the muscles in my face were unable to perform their basic function. I ended up in hospital with a suspected stroke. I remained there for three weeks. A stroke was ruled out, but I had great difficulty keeping my head up without fainting. Walking even with a walking frame was very impaired. Speaking and swallowing difficulties remained for months.

Unfortunately, one of the assessments I had to have was with a Functional Medicine Psychiatrist, as I was deemed ‘sad’. It cannot be said enough that the biologically debilitating neurological illness ME cannot be successfully treated by functional medicine, and the call for an assessment by a functional medic could only mean that they believed my symptoms were all in my head.

The young trainee psychiatrist with a beautiful open mind totally understood my account of the challenges of life with illness. I am not afraid to show my vulnerability and talk about my life. The medical team must have seen vulnerability as a weakness, and brought me in to see the main psychiatrist. He had no interest in my account of having lived with this illness for two decades and being totally aware of what I am and am not capable of. He drew me a stick figure, a thought cloud and a bolt of lightning.  (I am sorry I didn't ask for this masterpiece…). In a nutshell, I had to push through my limitations and have happy thoughts.

As the hospital is in Cork, and I live in the neighbouring County Waterford, the discharge nurse could not communicate with my Public Health Nurse (PHN). HSE logic. I had to exchange contact details between my PHS and medical team. After three weeks I was discharged, with no idea if I could actually still live independently. Some of the nurses were worried I would end up back in hospital in a few days. A temporary increase in care hours was put in place: Weekdays, morning and evening two hours; and two shorter calls during weekends. Over the coming weeks the evening call was shortened and moved to a midday call. Although my care package is reviewed every few months, these hours are still in place. I am very grateful for the safety this provides and for the wonderful carers I have.

It has taken eight months to regain some level of well being again, but my health is precarious. The numb feeling in my mouth and resulting speaking and swallowing difficulties remained for months. There are many days I spend mainly inside my home, lying in my recliner chair, or confined to bed. There are days I can enjoy the peace of my garden and have my mind focused on creative pursuits. However, I am now rarely able to leave my home. Certainly not unaided.

Which brings me back to the continued request for PA support from Disability Services.

No support to go outside of my home

As outlined a year ago, home care does not involve any care outside the home. My ongoing request for support to go to the shops, to the bank, to GP or chemist, or on a more social and wellbeing level, to go to the library, a café… continued to fall on deaf ears until a month ago. This is still very much a medical model of care. Someone who doesn’t know me decides on what I can and cannot do.

In May I repeated my request, and after many emails back and forth I learned which person in which department would have the ultimate say in whether I would be granted an assessment from Disability Services with the aim to ask for PA support. If successful, the day may come for me to escape my four walls with the safety of PA support.

I never received a response.

In July I forwarded guidelines from the Department of Health regarding Disability Services. These were obtained through Parliamentary Questions on behalf of ME Advocates Ireland.

(abstract:)

  “HSE Disability Services provide personal and social supports based on the needs of the individual, rather than the provision of services base on a specific diagnosis or condition 

The Government is committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose and enhance their ability to tailor the supports required to meet their needs and plan their lives. 

Over the past year I have received many empty promises. For example:

• 22 January: ‘... in relation to other queries [Assessment for PA], I will make enquiries and will revert back with an update once same is available to me...’
• 18th January: ‘... as previously discussed with Corina the local Disability team plan on undertaking a second assessment with Corina...’ [I never had a first assessment]
• No responses to emails 7 and 23 may.
• 3rd July: ‘... is following up on this matter and will revert to you...’
• I wrote again to ask for an update:
• 6 August: ‘ ... is annual leave until 14th August and we will revert with a response on return. Sincere apologies for the delay in responding to you...’
• I wrote again to ask for an update:
• 29 August: ‘... apologies for delay in responding to your below email. The Head of Service for Social Care is following up in terms of the assessment and we will have an update for you in same soon’.

In September I got fed up with it all. It took me a very long time to totally lose my patience and I contacted the Complaints Officer again. She had been so helpful to put the wheels in motion to get me out of care in January. She suggested that at this stage I would be entitled to contact the Chief Officer, which I did. A few weeks later I received a promise of an assessment with Disability Services.
Thank you.

Disability Assessment at last, after 20 months of asking

In October a Disability Services Liaison Officer came to my house with my Public Health Nurse. We had a very frank, open, and considerate discussion. The many cracks I fall in because of ME not being recognized under disability were identified. She could clearly see how much my illness has impacted on my ability to function. And I should be able to go outside my door…

I truly felt heard. Believed. Understood.

I felt at last that my story is being circulated by someone within the disability services and not just via my emails, and via the limited assessment procedures available to the Public Health Nurse. I hoped I would finally be supported to leave my home. And have control over how I use my care hours, beyond personal care. I am immensely grateful for the excellent home care, but I need to go outside my home at times.

I need the personal support as I need help to get dressed, and when arriving home I would be so tired that I need to be undressed, and put to bed. I prefer not to ask friends to do this.

The assessment was a month ago.

I have not heard anything since, other than yet again a promise of a response, when I made an enquiry last week. No response to follow up email this week.

My thoughts go from: “was this a ticking boxes exercise and thus fulfilled my request for an assessment”. To: “they are taking their time to set up a proper care package, looking at all the identified cracks in the system…”

Maybe, now the Personal Assistance Services Motion has passed in the Government on 19 November 2019, I will finally get an answer?

The perception that living with illness is a privilege 

This year I had to totally re-evaluate who I am. I am an independently minded woman, but can I remain living in my lovely home on my own? Can I continue to enjoy my own space and my newly designed wheelchair accessible garden? It truly is my place of peace and healing. What are my creative abilities at present? Although living with this illness for 21 years, this past year has been one of big adjustments. I had to accept strangers into my private space. I had to accept getting help with basic personal care. I had to accept that I am yet again mostly housebound. I had to accept that I also need support to bring my creative ideas into being.

Some people suggest that I am lucky to have so much time for my creative life. That I am privileged to have my house adapted for wheelchair use, to take ownership of a powered wheelchair and have a loan of a HSE profiling bed (hospital bed). Maybe I feed this distorted image by sharing images of my creative pursuits? Even if these images only constitute a few minutes out of a day, or week? I rather share these visual snippets than the reality of pain, days in bed, at times loneliness. I tell my experiences through my puppets and other creative explorations.

I see myself as an advocate for people with ME and other chronic illnesses and disabilities. My quest for care and highlighting these struggles are not just for my own benefit. I hope to have a tiny say in the way people with ME in Ireland continue to hit brick walls.
I might not have the capability to convey politics surrounding ME, but I hope that with sharing snippets of my personal story and my visuals of my creativity I can make a small difference in the lives of my fellow ‘hermits’.

Thank you for taking the time to read this.

And if I receive news regarding PA support, I will let you know for sure.

Corina Duyn

Founder member of MEAI

PS. Soon, I will be sharing thoughts about my most recent creative explorations in puppetry in more detail on my personal blog. My work can also be followed on Facebook or Instagram

Most recent update on the HSE Working Group on ME

Our previous blog post in May outlined some details re the start of the process of the HSE Working Group on Myalgic Encephalomyelitis (ME) and shows the Terms of Reference here.

For those who haven't read anything yet re the Working Group it was set up on the back of a recommendation from an Independent Investigation into Christine Fenton's complaint to the HSE about her HSE journey with ME. 

Update 

The Working Group have identified the next few steps in their work programme and is getting ready to send out surveys to gather important information about people with ME. It is essential that as many people as possible in the Irish ME Community are reached when surveys, etc, are taking place. 

Letting the Working Group know how you or those not on social media, e.g. not on Facebook, can be reached in a way which meets the specific needs of a person with ME is vital. 

Can you please share any ideas you may have, or any suggestions which could help someone else with ME, about how the Working Group could reach others not on Facebook or other social media platforms. Please add your ideas in the comments area below, or email to info@meadvocatesireland.com We will collate all information and pass onto the Working Group.

Your ideas matter. 

Please see important message below from the Chair of the Working Group, Marie Kehoe-O’Sullivan via Christine Fenton

    __________________________________________________________________________

Dear Friends,

The national ME working group have now completed a stakeholder analysis and identified the next two steps in our work programme.

1. We are going to continue to conduct and evaluate international literature on ME in order to identify the evidence to underpin our work.

2. We are going to consult with people who are living with ME, their carers, subject area specialists, health and social care professionals, service planner and coordinators. In order to prepare for this consultation, we would like you to let us know of any particular supports that you may need to participate in this process. 

We will develop a survey tool and some of the ways that we have discussed ensuring participation is that we will offer the survey online, in paper, by telephone and where necessary if you are home-bound, in person. 

Please let us know if there are any other supports that you can think of.

Looking forward to hearing from you,

Marie Kehoe-O’Sullivan, Chair of the Working Group

    ________________________________________________________________________________



MD