Orlagh Woods- CVID my story ….

“How I Got My Home Funding”

Home Therapy CVID

I’m now almost 22 and I’m still figuring things out as I go, especially when it comes to having CVID.  Adapting to having a new normal was very hard. I spent majority of the past few years fighting with TDs, (members of Dàil Éireann, the lower house of Oireachtas (The Irish Parliament) sending emails, having meetings and phone calls that seemed to go nowhere all whilst trying my very best to get my degree and sustain a reasonably normal day to day life.

I find it both overwhelming and ridiculous that many people in Ireland, especially those who have rare chronic illnesses, must still fight for the things they need to survive.

I would be lying if I said getting awarded funding for home therapy was easy. There were a lot of days where I thought of given up, I’m the type of person that hates confrontation so for me to have to argue with people I barely knew was a very strange experience.

I was asked to share my journey in getting home funding, it’s only fair that I start at the start.

I was repeatedly denied funding from the get go. Taking the advice from IPIA, Irish Immunodeficiency Association (our local Primary Immunodeficiency Patients’ Association) and the amazing nurses at the hospital I contacted as many TDs as possible. Some of whom never replied.

I was lucky enough to get a call from one TD that was willing to help.

She advised me to get as many written statements as possible, from my consultant, my GP, my college, from my parents, employers etc. all to show how much having to attend the hospital every 3 weeks is affecting not only me but the people around me too.

I was also lucky enough to have the help of IPIA – Irish Immunodeficiency Association behind me, where I could get advice from people that have been through a similar situation or are going through the same thing I was, which is always a reassuring thing when what you’re battling is so scarce.

IPIA – supported their Medical Advisors by submitting an important document to HSE/Department of Health in charge of Home Therapy.

Things took a bit of a turn about a year into trying to get funding. Every time I applied I was refused. I was at a loss. I hadn’t heard from any of the TDs in what felt like forever. I was basically ignored and like any human being I didn’t enjoy that feeling. I had finished college for the summer and I made it my goal to make some sort of headway with funding. So, I visited my local TDs office every week. I was told ‘’ sorry she’s not here today, she should be in on “Wednesday’’ Wednesday would roll around and sure enough I was there, but she wasn’t, this happened over and repeatedly. Like I mentioned I hate confrontation, and I would leave to office almost in tears because I was giving these people control over something that was very important, but they seemed to just ignore it.

I got to the point where I wanted to give up on trying to get funding. A friend mentioned writing a letter to the minister for health. I thought why not and I wrote him a letter, to which he replied ‘’ I cannot get involved in individual cases….. ‘’.

That is when I hit breaking point.

The Minister for health, the local TDs, a Minister in the Dáil and local health boards all refused to help.

Many of these types of stories go unnoticed because unless it reaches the gates of the Dáil or the media nobody seems to care enough to help.

I sent a very angry email to the health board that are in charge of the distribution of funding where I live. After I sent the email, I won’t lie I was upset, not because of the situation but because I had given the situation the power over me, I let it upset me. To these people that sit in their offices and hold the power to change people lives, I’m nothing but a name of a file they’ve refused. At this point the Minister that was helping me argue my side had not made any contact with me for roughly a year.

After I sent that angry passive aggressive email, the health board contacted the Minister that was helping me, and she made contact with me. At this point I realized being nice and polite only gets you so far with politicians.

A few months later nothing changed. Even though I was promised by the health board and the Minister that I would have funding in the following January.

I got to the point that I considered meeting with my consultant to discuss intravenous immunoglobulin because it felt like I would never get funding. But I held off in meeting with the consultant, and a few emails and phone calls later I was awarded funding.

It has changed everything so much. I don’t have to base what I do or how i do it around the hospitals schedule. I can administer the medication while sitting on the couch watching Netflix.

I wanted to give up on trying to get funding so many times before I was actually awarded funding. Persistence is the main thing that helped me.

There were so many days that I didn’t want to argue my side, my right to have medication delivered in the way that was best for me.

Getting help from local TDs was both beneficial and a curse. Having to wait for someone to ‘’find the time’’ to help you fight for something that you need right now is difficult. I couldn’t imagine how much more difficult it would have been if I didn’t have the help from the TDs and Ministers because it was through them that I became aware of the process that is needed to achieve being awarded funding.

I hope that by me sharing this it helps people, that are in a similar situation, know that there is always a possibility of things changing. I would encourage you to make as much noise as possible. Write posts about it, annoy your local TD’s, take help and advice from those that are willing to give it, do interviews, contact newspaper, write your story for IPIA, stand outside the Dáil if you have to, because everyone deserves to be heard.

Share your story too you never know who might help!

If you are interested to read all my story since I was diagnosed, please follow the link: Orlagh Woods