Oireachtas Joint and Select Committees

Thursday, 18 November 2021

Joint Oireachtas Committee on Disability Matters

Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion (Resumed)

Ms Anna-Karin Ulpe:

I thank the committee for inviting me today. Have members ever experienced a phone battery that does not get them through the day, or a battery that dies exactly when they need it? Imagine if that battery were your body, and you woke up one day and your internal battery was only charged to 20% and it could never be fully recharged. You would need to get your priorities right if you did not want to get sicker. What would you choose, showering or having a conversation with a friend? Imagine this is your reality every day and no doctor can tell you what is wrong. You are on your own.

I am 53 years old and my life changed in 2014. From working full time, I could no longer get out of bed. It took me five years to get the correct diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS. It is a complex, multi-system disease and the typical diagnostic criterion is that if we exert ourselves outside our energy envelope, our symptoms get worse. The deterioration may be immediate or delayed, and can last days, weeks, months or forever. Currently, I am mostly housebound, but on my best days when I am able to go outside my home, I use a mobility scooter. For years I have been bed bound.

I will focus on three things essential for myalgic encephalomyelitis, ME, sufferers: healthcare, mobility and housing. Adequate support starts with healthcare. The HSE currently has no pathway to care for ME patients and not a single official ME consultant. Many consultants and GPs dismiss ME or have no knowledge of it. The result is that many patients get no diagnosis or treatment.

In some cases, patients are unable to access healthcare as they cannot leave their beds or houses and home visits are not available. Without early and correct diagnosis, patients risk permanent deterioration. This happened to me when I tried exercising my way out of illness. It ended with collapse and I never got back to my previous level of functionality. Even if there is no medicine specifically for ME, there are possible medical interventions to alleviate some severe symptoms. In my case, I now take medication that helps me to remain upright for longer periods.

Without a supportive consultant, you are also alone in your fight for financial survival. After five years of limbo and relying on my partner for the basics of care and food, I could get a diagnosis and treatment that improved my quality of life. This could happen only because a friend drove me - I was horizontal in her car - from Dublin to Tullamore hospital, where I saw a consultant with a special interest in ME. He is accessible publicly only if you live in the catchment area. Before Covid, he used to see patients privately one afternoon a week; now, we have nobody. Ireland desperately needs public ME clinics in each hospital group. We need healthcare staff trained in ME and willing to keep up with the biomedical research in the field.

A consultant is also essential to accessing relevant mobility aids. I missed out on being outdoors for years and it took an incredible toll on my mental health. It was not primarily the isolation that got to me. I desperately missed the sun on my face, the wind in my hair, even rain in order that I could still feel I existed in the physical world. I have a tiny mobility scooter now, thanks to a friend who organised a fundraiser for me. It is the only mobility aid we can get into and store in our living room. We have no access to a car and my ability to use public transport is extremely limited. I really need a power chair and a ramp but, if renting privately, you have no right to adapt your housing. The welfare system is designed assuming that disabled people who do not own their home live in social housing. This is not true. My household is now on the council's list for adapted housing, thanks to my consultant, but how long will we wait?

In the meantime, despite my partner and I both getting the invalidity pension, we do not get fuel allowance. The maximum household income you are allowed in order to qualify is €1,509 per month, while the average private rent in Ireland is currently €1,334 per month. We cannot afford to keep the heat on. The system increases the risk of my health deteriorating further.

I cannot expect society to give me my previous life back, but I expect everyone with a disability to get their basic needs met, access to appropriate healthcare, mobility and suitable, warm housing. We deserve a life with dignity, quality and independence.