This happened me last week. I have a neuro-muscular degenerative disease, progressive and incurable. I use a powered wheelchair.
The health service compounds my suffering...the wheelchair they have given me is a monstrosity , it 'kills' my spine which is degenerating and with severe arthritis. Ditto my twin who has the same neuro-muscular condition.
The fight for a suitable wheelchair has been on-going for 3 years. The local manager refuses to send me (and my twin) for independent assessment, though we've asked why not, we are told "you don't fit the criteria", but they won't send us the criteria! So we cannot get an 'independent' assessment. We asked the specialists in the centre would they do a private (We pay) assessment but they said because they have a contract with the HSE this would 'compromise' their contract. In other words, this independent wheelchair specialist assessment company are in hock to the HSE. so there is no-where we can go for an independent wheelchair assessment. so we're stuffed!
Now I also have dystonia. a painful muscle contracting/spasm as a result of parkinsonism. this results in my left foot contorting and turned on it's side. I cannot put foot flat on the ground. I have waited over two years for special shoes to help me walk pain-free walk. No shoes yet.
I have been in the 'bone & joint ' clinic in St Vincent's three times since late 2013. The referral was made after a huge spinal 'crises' where I was carted off in an ambulance on gas and air after a trip out in my wheelchair juddered my spine so much it went into a huge spasm. Two days in hospital on a drip feeding me pain killers and antispasmodics were horrendous. So referral to 'bone & joint'. I knew I had degeneration of spine, a scan was done whilst in hospital. The first Bone & Joint clinic appointment I saw a physiotherapist, not a doctor! this was a surprise. I had to insist on talking to Doc. They arranged for ultra sound of shoulders and a bone scan. the former never happened, the latter I was reluctant to have as I'd ALREADY had an MRI. Second visit they promised injections into hips and back under x-ray guidance (April 2014). October visit here is the conversation between myself and physio:
"how have you been since last time?"
"well", I said " the same, nothing has happened"
"have you had your injections?"
"no"
"why not"
"because I haven't been called"
"Oh" pause "there is a 5 month waiting list - should be any day now"
consultant arrives , shakes my hand, and relays that the bone scan (which I eventually agreed to have) showed "Active Arthritis in spine" . I really didn't need a scan to tell me that! I haven't slept for over three years with agonising back pain. "we'll refer you to the pain clinic"... (this visit cost me 80euro as I got a wheelchair taxi from co Wicklow there and back)
ok, here is my astounding question "why did they not refer me there when I arrived in agony in their clinic a year ago?". now I'll have another long, long wait. Meanwhile I am on morphine patch and cannot sleep in bed.
I am occasionally incontinent. Advancing bladder dysfunction is no fun. This is the result of my Parkinson/parkinsonism. The National Hospital in queen's Square London advised bladder function tests. The Irish hospital refused. Put me on a pill. But I need to know if my bladder is emptying and why I have Kidney pain. (Back flow from a full bladder may be damaging my Kidney) . But I suspect at age 61 with a degenerative disease they'd rather save money. Indeed Varadkar, our Minister for Health has asked doctors to 'cut back on tests'. Who will they 'cut', us 'oldy-foggies' ; the 'wrinklies'. We are not an economic asset. Quite the opposite.
My bowels don't work. The peristalsis to move food through gut has ceased, almost to function. solution "eat small meals often". Meanwhile I feel sick, bloated, in pain and horrendous.
The neuro-muscular decline is suspected to be caused by Mitochondrial disease. A rare disease. Ireland has no specialists in this rare disorder. Myself & twin have waited over a year to be sanctioned to RETURN to the UK to a mitochondrial disease centre in Newcastle University Hospital in the North of England.
meanwhile I cannot walk far, my wheelchair is crap, my spine degenerating, my foot turning in, I'm vomiting from bowels not working, and I'm incontinent.
Who is supporting me -- all and none!
On paper I seem to have consultants in tow. I appear to be having treatment and support...but it is a mirage. When Enda Kenny asked the HSE about our care didn't the HSE managers sent glowing reports of "all they've done for the Kennedy Twins". Just what Kenny loves to hear! Believe them, Mr Kenny, not us. classic.
So in frustration in the depths of depression because little is being done to relieve my pain and Broken body and no-one to talk to I'm carted off to a psychiatrist. I agree to go, NOT, I hasten to add, because I believe I'm mentally ill...I don't. I agree, because a) there was no one else b) I THOUGHT she being a psychiatrist in St Vincent's she'd understand the frustrations of living with crap HSE services. Wrong! As a true blue HSE aficionado, she tells me BECAUSE I'M DEPRESSED I distort my view of the HSE services.
Isn't that amazing? I mean that is quite a way to conceptualise a patient's despair of the HSE services.
So I'm the one who needs 'psychiatric' treatment because I don't see the joys of the HSE medical services!
NO - I DON'T - On both counts.
So dear wrinklies with any neurological diseases/rare diseases/and body crumbling sitting in crap wheelchairs on morphine - We'll just give you ANOTHER pill to re-align your HSE 'distortion' and make you see us with halo's and wings all fluffy and nice!
Not on your nelly you won't. The HSE is fallen, is defunct, is 'not fit for purpose' and I'm not prepare to be the sacrificial patient thrown into the abyss of a psychiatric hospital for CBT and Anti-depressants because Doctors/HSE/GP's stick their head in the sand like an ostrich and pretend and 'play' medicine in the LEGOLAND of Irish Medicine.
Yep! The pharmaceuticals are high as a kite with the situation. Anti-depressants are rolling off the shelves. not down my gullet they're not!
