ME Advocates Ireland (MEAI)
Sunday, 12 May 2019, M.E. and the HSE: the good, the ‘bad’ and the ‘ugly’. For patients with Myalgic Encephalomyelitis (M.E.) the HSE is an organization full of contradictions. A reflection by MEAI member Corina Duyn on dealing with the HSE
(Ireland's Health Service Executive):
At Primary Care level one can meet HSE staff with up to date medical knowledge of this neurological illness. When being met with understanding and support I am so incredibly grateful. It almost brings me to tears. Yet, of course this knowledge of such a debilitating illness as M.E. should be standard. It is not. The higher one goes up the HSE ladder the more challenges one faces to get the support we need.
I would like to express a big Thank You to my Primary Care Physiotherapist. She fully embraces the dangers of exercise for people with M.E. She is mindful to prescribe only slight movements to at least maintain my current level of mobility. She gave me ‘Hand Putty’ in the hope to improve the strength in my hands so I can work with clay again. It is with deep gratitude that she supports me as a person with a complex illness, but also takes time to listen to my challenges, hopes, and dreams. When she suggested I need some ‘hands – on’ physio work, she expressed concern, correctly, about causing more harm than good.
The speech and language therapist also fully accepted M.E. and respected that I have a good understanding of my illness. I was referred to her after a recent hospital admission, due to inability to speak and swallow properly. My Occupational Therapist shared her knowledge to make my house safe and fully considered my increasing level of disability. Including providing me with a powered wheelchair, which I can use in my small house. My thanks also goes to my GP, and my Public Health Nurse whom is fighting tirelessly to obtain care support at home. A big thank to my carers, and non-HSE support of family and friends.
The next level of HSE staff are further removed, and perhaps therefore not fully embracing the reality of M.E. These are the people who make decisions over my life, without actually having met me. They work in offices, do the ‘numbers’ and make decisions based on local guidelines. Not national HSE guidelines. Getting support is very much a postcode lottery.
I fought relentlessly for a year to ask for a care package, preferably a Personal Assistant (PA), so I could remain living at home, but also have the support to leave my home with assistance. Over time I received 5 days care for 1.15 hours a day. Weekends, although approved were not provided. The continued fight and lack of suitable care while increasingly more ill resulted my being taken into a care home for the elderly just after Christmas. I was too unwell to look after myself. It was a totally unsuitable location. Read the story here:
I am aware that some HSE staff at this level did fight for me, but were not in a position to make executive decisions. Thank you for speaking up for me.
Coincidentally The Journal.ie (link also included in the above Blog Post) published an article about the long battle, at the same time as I was taken into care. Together this seems have woken up the HSE and ‘suddenly’ I was provided with seven-day a week home care package. Thank you. But it all came at a cost to my health.
The clinch is that in order to be in receipt of Personal Assistant (PA) support, one’s illness/disability has to be listed as an approved disability. As M.E. is not on the Disability Services list in my local Health area (CHO) I could not avail of PA services. In other parts of the country, M.E. is listed as disability. The Postcode lottery of care…
I am regarded as having a disability for all other parts of the HSE, and society.
In order to receive home care support one needs to be over 65, or be terminally ill. I am neither. So I fall between the cracks of care. There is a tiny budget for the likes of me within the over 65s HSE home care budget.
Asking for care is not easy. At times it feels like that care is a regarded as a privilege… I would do anything to not need care. To have the freedom to go about my day, in whatever way I please. To have the ability to contribute to society, instead of being a person who is on the receiving end.
Curiously my current home care package is funded by Disability Services. So I seem to have one toe in the door to being accepted as having a disability. Why is this important? Well, the outstanding issue is that with a PA provided by Disability Services, I could also be supported to leave my house. With home care this is a grey area. Home care is what it says on the tin: Home Care. Personal care.
The last time I was able to leave my house on my own was in October 2017. I still had the ability to use a mobility scooter at the time. This is no longer possible and do not feel safe going out on my own in my wheelchair. Unfortunately.
I am still trying to convince the HSE decision makers at this level, the ones whom have never met me, and are not responding to my request to meet me personally, that I have basic needs outside my house too. Like going to the bank, GP, shopping, perhaps even a visit to the library or having a social interaction outside of my house.
This battle continues to this day.
The next level of HSE interaction can be even more challenging. Although there are some positives there too, but lots of room for change!
During my recent hospital admission, only a month after returning home from care, I was met with young doctors in A&E. Some in fairness knew about M.E., others acknowledged that they had limited information but were willing to learn. The sudden changes in my ability to speak properly were taken serious. Through test, a mild stroke was ruled out. I was in hospital for three weeks. As part of the assessments however, I was yet again referred to the psychiatry department.
As you are damned if you agree to meet them, and damned if you don't, I did meet with a young psychiatrist. In fairness he was great. He totally took on board my experience of illness. He admired how I translate my lived experience through my creative work. This young man concluded by saying that he had no idea why I was referred to psychiatry. Thank you.
However, one morning I was plucked out of bed, and brought into a room with the consultant psychiatrist who had nointerest in me. His only aim was to push me into following his ‘knowledge’ on how to fix my now 21 years of illness. He asked me if I was aware of the latest research.
I told him I was aware of ongoing medical trials, and some medication. He proceeded to draw me a diagram of a stick figure standing on a path, a bolt of lightening on the right, a thought cloud on the left. My heart sank. He told me the story behind it. In short, it was my thought pattern that is keeping me ill. Even writing it now (for the first time since this happened in February) brings me great sadness. His solution was that I had to push through my ‘perceived’ limitations. Yet again I was made to believe that I am still ill because I do not want to get better. I am to blame for my ongoing illness. Who on earth want to live like this for a lifetime?
I told him his ‘proven treatment’ of CBT (Cognitive Behavioral Therapy) and Graded Exercise for people with M.E. was wrong. Outdated. Totally debunked. Talked about in the UK government as being dangerous and causing harm. I told him how I managed to live with this illness by knowing my limits. To pace my activities; To have a healthy mind; To meditate; To be creative, in every sense of the word. I told him how activities which give me great joy still result in PENE (Post Exertional Neuroimmune Exhaustion) if I continue any longer than my body allows.
I was dismissed.
My hospital discharge notes state that I ‘declined any further intervention with psychiatry.’
Well hell, Yes! But the sad thing is, that psychiatry made its way into my notes. I feel the care I received after this meeting was different. Maybe I am being paranoid, but that is what it felt like. Being momentarily upset after it proved very challenging to walk a few steps independently, was frowned upon. Grieving, which learned to be a necessary part of healing seemed to be viewed as sadness and not having a healthy mind. Other patients, who shed a few tears or gave out in a rather vocal and public way after realizing the impact of new health challenges, were supported. Was I now seen as suffering from a psychiatric illness? I truly don’t know. I don't know what is written in my medical notes. I just know that I was told to do things I could not safely do, like walking on my own. The hardest part of life with M.E. is to not have my physical illness taken seriously and not to be believed by the ones that should Do No Harm.
I learned to live well with M.E. despite the many challenges, but the ignorance, the lack of understanding and willingness by people higher up in the HSE to be educated about M.E. remains the biggest hurdle to overcome. I became one of the founding members of ME Advocacy Ireland with the aim to bring awareness and hopefully change the way the HSE as well as the Government are caring for people with M.E. We truly need National Guidelines, training of all medical students, a dedicated M.E. consultant, and consistency across the country on the provision of care. On the 14th May, from 11.30am to 2.30pm we are once again Calling for Change for M.E. outside the gates of Leinster House. Unfortunately I won’t be able to be at the protest myself as I am unable to travel, but will continue to campaign from my home, and through my writing and creative work. Please support us on the day and beyond.
For more about M.E. please visit other page on our Blog
Corina Duyn (Co. Waterford)
For more about my work see www.corinaduyn.com