Phew, that was close!

My twin is in hospital facing surgery. She had to drive herself there even though she has a neuro-muscular degenerative disease, uses a wheelchair, and was feeling very unwell. Why did she drive there alone? because the Co Wicklow HSE will not give her, or me a proper PA (personal assistant) to help us live our lives in any decent way as disabled women with a rare neuro-muscular disease.

She had spent the night a week previously in the hell-hole A&E of St Vincent's Hospital. I was with her as she waited 7 hours to see a doctor. meanwhile writhing in pain on a trolley. they x-rayed her at 8 hours and two hours later they discharged her.  the pain had eased, ergo, 'better'. With no diagnosis, no follow up arranged, no treatment. She never saw a gastroenterologist even though she has crohns disease.

They offered her pain killers when she arrived - panadol - that were useless. then stronger ones, which she was not allowed to take, and said so.  This was translated into "she's refused painkillers" when I tried to get her some relief. I told the nurse "she hasn't REFUSED, she cannot take them". They left her writhing on a trolley for hours. after she had allegedly 'refused' painkillers, no doctor came. I went out four times to the nurses station to be told the doctors were "busy".

Anyway, the pain subsided after they put a drip up and gave her some 'stuff' so that meant - she can go now.

After discharge, things did NOT improve. She was in a gastro crises, a week later after more considerable pain and bowel difficulties, she could cope no longer... She drove herself to the Beacon Hospital. A PRIVATE hospital. Yes, we struggle to pay the premium, indeed NEVER use the private sector, unless for inpatient, We cannot afford consultants outpatient fees. It does make us feel guilty.  We are socialists at heart. We don't easily 'jump' the queue. We are forced into this immoral system. St Vincent's A&E is a disgrace.  As all our A&E's are in Ireland. In fact all our public hospitals are a disgrace.  putting lives at risk.  offering only a 'patch-up'  and hope...service. Not the staff's fault, its the managers, the government...the system is chaotic - broken.  Mind you I wonder why 'pain has subsided' equates to 'ready for discharge' when the problem has NOT been determined or treated. She SHOULD have been admitted. She wasn't. I query that  I do.

We are afraid, very afraid.  As most who are ill in Ireland are. The fear of entering an A&E war zone so etched in older people's minds they'd rather suffer and die at home. We have no idea how many choose that. But many do! We have no doubt about that.

As patients with a RARE neuro-muscular disease, myself and twin get NO CARE OR TREATMENT in Ireland. None.

Health Care is a HUMAN RIGHTS issue . It Is. but we don't get it!  Ann (left) me (right) outside Leinster house. alone.  

 

Irelands doctors, neurologists, don't even want to determine what this disease we have is.  We are aged 64. 'Old' in the hospital system. 'bed-blockers'.  There's no point expending money on the Kennedy twins, no point in KNOWING what's going on. NO - POINT.  Oh they don't say this. They couldn't. That would be unethical, but all their responses, certainly from the neurologist from hell that we have, suggests very, very clearly "go away, go home - die".  He discharged my twin after "a breakdown in the relationship" which was in fact Ann quite vociferously challenging her treatment of her, by HIM. He didn't like that so 'sacked' her. Be gone, you witch!

He put me on the annual 'routine return' list. Once a year and we don't yet know the real truth of our disease. We are 'discharged' and put on a routine annual list and the tests in the UK are still not back, completed. We are NOT 'routine', we are RARE. and the neurologist doesn't give a shit. go home and die. And no-one can MAKE him 'give a shit'. NO-ONE We are aged 64, too old to spend money on.

Go home and die.

I wonder if that is why the A&E discharged my twin last week, didn't admit her to deal with her bowel crises? Too expensive. Bed blockers. etc., etc.

Now she is in the Beacon, where yesterday two lovely consultants around her bed deliberated on her treatment.  After tests yesterday, and more today.  they are thinking - SURGERY.  Yes, she DOES have a REAL problem St Vincent's.  A PROBLEM, a medically urgent problem.

Now isn't that grand. the public sector saved money on THAT operation...they got Ann OUT before they HAD to do THAT!

Phew. that was close...they're saying in the Public hospital. We saved LOADS there!

isn't that GRAND.