Ann Kennedy & Dr Margaret Kennedy
I was screaming in pain and distress. I was emotionally exhausted, physically wracked in agony, tired of the struggle. I phoned the public health nurse clinic, I left a message - "Please can you ask her to make a visit"? I needed someone to talk to.
She didn't phone me, call or see if I was ok. I have not heard or seen her all this week. THAT is the level of HSE care and support. NADA.
Not that unusual.
I am in severe, severe pain. I sleep little on a crap HSE delivered hospital bed. I've begged the HSE for a decent bed. I cannot move in bed, turn over, re-position without extreme pain. Pain from osteoarthritis which has ravaged my spine, knees, hips. No I can't have replacement surgery because I have a rare (Unknown) neuro-muscular degenerative disease. I am on morphine.
The four diseases that coalesce into my one weird unknown rare disease are Parkinson's/Parkinsonism, muscle myopathy, Dystonia and a defect of energy production (mitochondrial disease queried). No UK specialist has seen this disease before. My twin has the same plus a raft of auto-immune diseases.
Margaret undergoing a CPEX test in Royal Victoria Hospital Newcastle UK
Ann has the CPEX test done
Having been to the UK three times and told by UK specialists we need more tests the Irish doctors think otherwise. Refusing to follow up UK recommendations. In fact the UK reports languished on a neurologist file ignored. He put me on a yearly 'routine annual return' list and ....forgot about me.
He did absolutely nothing to determine
a) what was wrong with me by arranging further tests recommended (He did send us to UK under the E112 scheme - but he decided thereafter not to be active in our care)
nor did he
b) take an interest in trying supportive or even some palliative treatment measures. Of the 'care plan' devised by the UK he admitted on questioning that "I suppose it was my job to [Implement it]". He never did. Nor cause it to be implemented.
The message was 'Go home - live out your life comfortably with HSE support. We won't send you for more tests. We won't treat you, We won't find out what's going on - you are OLD (age 65) not worth it'.
I know what my body is doing mostly, though some aspects of understanding remain.. I'm now in a wheelchair - as is my twin - but I don't know WHY?
Yet Consultants in the UK had ideas and they made suggestions - trouble is the Irish Doctors, I was told; "have a different view" . I don't even know which Irish Doctors 'have a different view. All I know is I left my useless neurologist - and put in a complaint to the Medical Council.
I have serious Parkinson's/parkinsonism features, I cannot walk, I'm on Parkinson's medication but I have no neurologist (since Beaumont Hospital refused to take us rare twins on as patients) to look at my medication to see if more is needed. Or if I need something to help my walking.
I must be the only Parkinson's patient in Ireland with no neurologist. Its terrifying I have no consultant to talk to.
Why? because 'Irish doctors have a different view' to top UK specialists who did tests Irish doctors couldn't even dream of doing.
Yes, the tests were done, things 'found' , and when we returned - ignored and refuted.
I can't get back to the UK for further tests recommended because 'Irish doctors have a different view' and there's no consultant willing to sign me or twin back to the UK under the E112 scheme for cross boarder EU care.
I am put on Island detention. I'm in a prison. Ireland has become our medical prison. A prison that refuses to treat us. Care for us. let us out...
No doctor , HSE official, Minister Simon Harris cares enough to do (or arrange to be done) the tests the UK say we need. The tests we know we need. Why?
because we are OLD. Not worth it!?
its all about costs. Twins age 65 are not 'worth it'. We've been told 'what's the point, there's no treatment, no cure'. Well there is a point - knowing your disease does significantly impact on service provision, mental health, acceptance and coping strategies. furthermore we have a right to a diagnosis. Is that not 'worth it?'
So what of the 'go home and die with HSE support in the community'. This is a joke. Completely farcical.
The HSE has, in my view, done very little to support me/us. They say to TDs who try to get me (and twin) the care we need that we have a full 'highly skilled professional team" caring for us.
I have home help - yes, I'm grateful - I have 7hrs per week 'Personal assistant' (PA) - not enough. Not near enough to affect a 'life worth living'.
So what of my 'highly skilled professional team caring for me' - well that is very debatable.
I have a social worker...I never see, she doesn't return telephone calls. so far she has not done anything to improve my quality of life. (a psychologist has assessed both myself and twin as suffering severe PTSD and with 'quality of life in the bottom 20% of the population) Mostly caused by the lack of 'independent living' support from the HSE.
The Social worker has done nothing to improve my 'quality of life' - nothing. she is not 'available'.
I have a physiotherapist, I'm allowed 4 sessions of physio per 6 months - I hardly ever see him. Though he visited me before Christmas and declared in writing his concern about my risk to falling and supplied me with more walking aids.
He told my GP I urgently needed a neurologist. The GP said he could do nothing about that! (I'm on a 4 year waiting list at Tallagh). he just 'opted out'!
I chose to leave a neurologist who was doing nothing - my 'punishment' was to be put on a 4 year waiting list. and my GP doesn't worry about my lack of neurological care. I despair of medical care in Ireland.
The HSE refuse hydrotherapy , the only form of therapy my body is now capable of. known to alleviate pain, to keep you mobile and strengthen your muscles - it is refused.
I have an Occupational therapist who, so far has supplied a chair to sit on, but not a decent bed to sleep in (I've asked for nearly 4 years), not arranged seating adjustments on my wheelchair which is crucifying me,(I've asked endlessly) nor arranged how I can live my daily life with this disease. I rarely see him.
I have a public health nurse - a nice woman - but whenever I need her she's not available. She doesn't come when I just need support.
and that's it...in effect - I'm 'known to services' but sure as eggs is eggs this doesn't translate as ... I get 'a highly skilled professional service".
I'm on their books...I'm known - but I get very little.
I know its pointless contacting the social worker or nurse if I'm in terrible distress. no-one will come.
No one will come.
on those days I cling to my raft trying not to commit suicide.
Now the HSE has agreed to pay for a years worth of psychological support. They effectively ground me and twin into the ground and decide "oops, we better save the drowning rats".
I am now asking, as well as my twin, for a fully 'independent living, self directed care package'. That the HSE give us a budget and we arrange our own care and support.
The HSE are prevaricating, arguing, delaying, refusing this...
We want 'out' of HSE power and control over us. We want rid of HSE professionals (as far as possible) in our lives.
They've done nothing but crucify us, destroy us, no...try to annihilate us.
They called us 'serial complainers' for complaining about the services we were given/not given. We put in an official complaint about that and won.
https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwin8cPIlKrZAhXMLsAKHdKXDRcQFggpMAA&url=https%3A%2F%2Fwww.herald.ie%2Fnews%2Fcalling-disabled-twins-serial-complainers-is-unacceptable-says-td-35401611.html&usg=AOvVaw0zbGUppSn-P91G-rVsw9j_
The HSE had to apologise.
They were recommended to sort out the mess. two years on from winning out complaint the HSE has NOT given us a 'life worth living'.
THEY seem intent on destroying us.
We are disability campaigners. We are disabled activists.
We are Human Rights defenders.
We will not succumb to HSE destroying us. We will fight for 'Independent Living'. We will fight to LIVE a life worth living.
We refuse to be confined to a 'death wait'. just to pass the day staring at our walls - waiting to die. That's what the HSE want
we will fight for medical care - a diagnosis - treatment
we will fight for 'independent living'
We may be 65 - but we are worth it. We refuse to be annihilated by Irelands health service.
. We will never give up
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