No Country for the Disabled

Many of you know that my son Jono has scoliosis and kyphosis (and Asperger’s Syndrome). Many of you also know that he is now in such pain he can’t walk far or stand unaided for long periods of time. I asked the GP to refer him to Occupational Therapy Services. Over two months have passed and we’ve heard nothing so I phoned the O.T office in Markeivicz House who told me there is no record of a referral. I contacted the GP surgery and they said they assumed he was referred but they can’t find a record of him being referred.

So it’s looking like he hasn’t been referred at all. Markievicz House tell me I can refer him myself but he has to go to the back of the waiting list. The last couple of months count for nothing because there’s no record of it. I didn’t even know you could refer someone yourself.

I went into the Citizens Information office three weeks ago and they said there was nothing they could do and I should contact my local TD. I’ve since found out there is a disability advocacy officer in the Citizens Information Centre. This person is away this week so I phoned the National Advocacy Service for People with Disabilities who tell me there is a 28 working day waiting list to be seen in Sligo….but they aren’t sure if there’s anything they can do anyway. I have to admit I got upset, I don’t usually cry but I did today. It was then suggested that perhaps I should go for counselling or phoned the Samaritans.

If I wasn’t angry enough about this whole situation I’m now bloody fuming about it. How dare someone suggest I need counselling. Am I not allowed to get upset when I see my son in so much pain?
Why wasn’t the referral sent to the OT?
Why does Jono go to back of the list even if the GP tells the dept. it was their mistake a referral wasn’t done.
Why is everything a bloody battle?

Jono was born in Ireland, one of the reasons we moved to Ireland was to have our family in a place that would offer them a better quality of life. We had no idea Jono would become disabled and we wouldn’t have him any other way but it’s awful seeing your son suffering and knowing there isn’t a thing you can do to help him. Yes I could buy him a very basic wheelchair but we tried one out and it isn’t really suitable. I’m not going down the crowdfunding route, I can’t deal with the negativity to be honest and I also don’t see why members of the public should bail out the HSE or mop of the mistakes of people not doing their jobs.

This afternoon Jono is upset because we are upset and angry and he can’t understand why, once again, he’s waiting. Much of his life has been spent on one waiting list or another. The 8 years suffering under the team in Sligo Hospital being told to take 2 panadol and lie down until we realised they couldn’t carry out the surgery anyway. The Crumlin Waiting list for the spinal rod fusion which finally happened in 2009, a good few years respite until the curve start again above the rods. On the waiting list for surgery again since April 2017. Waiting since January for pain management injections because somehow although he was being seen regularly and they really made a difference he’s now on the waiting list again.

Without our fantastic physio who told us this week that he believes another surgery will relieve the pain we would be lost. It seems that no one else in the health service gives a damn.

This is really no country for the disabled. Thanks for reading.