GP's and Medical Consultants must rise up and speak out

Ireland's primary health care system is broken. Completely.
Public hospital care almost equally so.  
Who is fighting for their patients?

 

Having tests in UK not available in Ireland

My GP is a mine of information. Not always welcome. But it is his cynicism that disturbs me. His own 'brokenness' is quite apparent as he lapses into depressing negativism and defeatedness. Its enough to make me sink into the deepest depression concerning my will to live, not die, under Irish Health care.

He often sounds like a man weary and in pain. Too often for me to gain any hope or joy in my medical care. I too, feel defeated.

This scenario is a wasteland of misery. Where fighting for medical crumbs is essential not optional.  Those medical crumbs to keep you alive.

Take some recent offerings from my GP. The dialogue goes like this:

Primary Care Team Meetings

MK: will you attend my primary care clinical team meeting and fight for the care I need?

GP: Margaret, I've long since stopped going to these meetings, nothing is achieved, they are a waste of time and I'm better used seeing 15 patients that morning .

This meetings are vital for the co-ordination of my care as a woman with a rare neuro-degenerative disease with multi-system problems. They are designed to co-ordinate care, to get the best care.

He didn't come. 
Well he was right. Nothing was achieved.
But HE might have made a difference.
I'd have liked the effort - the support...

Physiotherapy 

MK: I really, really need physiotherapy. I'm in so much pain. It was recommended to be 'on-going' by UK specialists.

GP: Margaret, I have a patient who had a stroke, was rehabilitated in Donnybrook , came out walking and got NO FURTHER physiotherapy. She's now in a wheelchair - not walking.

or as in another gem...

GP: you are as likely to get physiotherapy as you are to get a ham sandwich from a Rabbi.

 



Neurology

 

after considerable difficulties with my neurologist, who is profoundly useless - if not negligent. I discuss my frustration and fear with my GP. 

 

MK: He is useless, he's not fighting for my care, my treatment or even trying to find out what's going on; why I have this disease, or even what it is,  He doesn't order the tests the UK say I need, he hasn't put in operation UK recommendations and now refuses to sign the E112 forms to get back to the UK for more tests a London specialist says I need.

 

GP: (reluctant to hear criticism of a consultant - strongly resistant to listening.) I don't want to 'get into this'. 

 

My GP is as much into medical 'brotherhood' as many in the medical profession.

 

 

MK: But I can't talk to him, he doesn't listen, he can't talk to me. There's NO DIALOGUE. NADA, nothing!

 

GP: Margaret, all neurologists are 'on the [autism] spectrum'

 

 

This I understand at least, but doesn't help me. I have long wondered whether my neurologist is on the autism spectrum due to his very weird 'relationship' style. Which includes NOT LETTING you put your own shoes and socks back on after examination.  No, he practically forces you to 'let him' put your shoes and socks on, no matter how much you insist you can do it yourself.

 

I told this to my GP who looked at me in absolute confusion with a smile on his face suggesting something akin to 'are you making this up'. No I'm not! 

 

GP: Does he put men's shoes and socks on.

 

MK:  That is a good question - I don't know!

 

This neurologist also pulls his hair when distressed, challenged or anxious. Yes, starts pulling his hair. tugging at it. it is a sight to behold. A consultant in distress.

 

Primary Care support in the home

 

 

My twin speaking at the Ratify the UNCRPD rally outside the Dail earlier this year. I spoke after her on - Getting medical care in Ireland (or rather NOT getting medical care in Ireland!



 

 

As I degenerate, I need more support to live independently. but the HSE primary Care services refuse to give me the support I need. I go to another, younger, female GP. I go to her when I'm particularly upset. The male GP does not cope well with emotions. I was crying and at the end of my coping rope!

 

MK: I really need more support in daily living. I'm not coping, I am on the edge. So depressed, unable to cope

 

GP: Do you need to think about a nursing home.

 

MK: (Horrified at the 'easy' way out, I say) No, I bloody well don't. I need more HSE care for independent living, that's what I need.

 

I came out roaring crying. feeling my GP's are simply NOT on my side of the court.

 

I need a neurologist I can dialogue with, not one with a compromised ability to relate to his patients

I need further medical investigation/tests into my rare disease.

I need (and my twin with same disease)  overseas medical care as hospitals have said they CANNOT deal with our disease. We have this in writing.

I need primary care medical support - physiotherapy, and more

I need a personal assistant (PA) package to allow full independence.

 

I need GP's willing to fight for me. Not shrivel up into their own 'depressive' moods about Irish Health Care. Willing to pick up the phone...write the letters, go public...on what we patients are going through.

 

But the GP's...our first real medical supporters are depressed, withered in spirit and 'fight', long ago lost the will to fight for anything for their patients. Knowing the HSE primary care, even hospital care...are so collapsed they feel they cannot impact in any way for their patient.

 

This is exactly why our HSE services do not change.  The medical profession has given up the fight. The HSE love it!

 

But this is wrong, even unethical, even unprofessional. It is the GP who MUST fight for every individual patient, and/or the consultant. they must get the care that patient needs. Its hard work, its dispiriting, but has to be done.

 

If GP's/consultants abandon us...we will die and die early. Or live miserable lives of medical hardship and pain.

 

how can we patients support our GP's/Consultants to be full advocates for better care?

 

answers please in comments section.

 

Yes, Health Care IS a human rights issue

 



Bloom - ing Difficult

Can you have a day out without be reminded? No

Can you live one day like everyone else? No

only...if everyone KNEW...how Bloom - ing difficult it is.


Yesterday I had a fab day in Bloom - Dublin, our annual Garden showcase. Thousands go...and yes, it was chocker full. And I did have a great time - I don't want to deny THAT.

But you are, every hour 'reminded' - you are a) sick, b) disabled. c) not walking d) not included really e) causing a hassle

The Journey

Getting there was a nightmare as Ann and I had to travel by public transport and a taxi. Here's the timetable

6.am - up
7.30am - leave house to go meet up with Ann.
8am - Leave Ann's house to go to Station
8.30am - At DART station, man pre-booked to get us on.
9.30am Arrive Connolly station - Man pre-booked to get us off
9.30- 9.45 - loo stop before proceeding onwards
9.45 am Go to LUAS to catch Tram
10.10am arrive Heuston Station
10-15am - find the taxi - we know the driver.
10.15am because only one taxi available he takes Ann off to Phoenix Park to 'Bloom'

I sit at Heuston Station waiting for him to return. Go get a croissant & use ATM to get money

11am Taxi arrives back for me
11.30 arrive Bloom - 3 and a half hours later. already exhausted.

Needless to say had we a PA (personal assistant) and a van for two wheelchairs we would have been there in an hour!

8am picking up coffee - Ann (I don't drink coffee!)

on first train into Dublin

 

Hauling me out of taxi at Bloom

 

We have a great day at 'Bloom' ; crowds were happy, the sun was shining , mostly. the flowers were fab, the show gardens fascinating. We did enjoy muchly.

 

 

Seeking a space to peer & gawp at the garden earmarked for 'a look' was ...complicated. so many people and you are in a sitting position and everyone else is standing.

 

You creep, as much as one can 'creep' in a powered wheelchair, edging towards the ropes of the said garden. People walk in font of you as if they didn't see you, some actually don't. One man fell into my lap (practically) and inadvertently turned off my wheelchair as his hand gabbed the steering arm.

 

Another, a woman also 'fell into my lap' grabbed me and profusely apologised; "Oh I'm so sorry, so sorry, I'm so sorry" all the time shaking and stroking my hand and arm. "it's ok, no, its ok, really its fine ...so sorry myself...its fine" I reply whilst inwardly groaning.

 

You just find room and the crowds think the space in front of you still leaves enough for them to walk in procession...

 

"er, hey, you, STOP, STOP...don't walk in front of me I'm looking at the garden"

 

 

 

One woman actually climbed over my legs and wheelchair to get in front of me.

 

The rain pours in a flash shower. Everyone's under the trees. We get our free gizmo out, given to us at the 'Dementia Garden'...a plastic ball in which is a rain mac. I struggle to open it. Thinking its my muscle myopathy I ask a man to open. He couldn't either...but eventually did.

 

Ann get a stranger to dig out her proper rain mac...whilst a woman 'dressed us both'. Haven't a clue who she was...total stranger. Nice to have my mac on...but...all dignity is surrendered. If only my PA was with me.

 

Lunch (no, they don't expect two bloody great wheelchairs with occupants)

 

We find a huge lunch tent. Q up. trays are difficult. the roped Q narrow. woman in front offers to take anything I need off top shelf; "No, I'm fine, going for a cooked lunch" I say in utter crip gratitude (hundredth time). I am grateful...but it's tiring. Oh for my OWN PA .

 

Get lunch and catering person carries to table but WE have to traverse tables and chairs to get to it.

 

Chairs are moved, shoved, taken away. People shift, move forward, back, move the whole table to let us through. Finally, I'm scrunched sideways on to my table so put plate on my lap. and decide to eat with my hands. sod the knife and fork! (sausages & chips - doable) . getting out, same processes...shift, shove, move, disrupt, bang, clatter, OUT!

 

Departure timetable

 

More garden looking but by

 

3pm we are shattered. We go to Bloom office and call for a disabled accessible taxi. None available - all contracted out to the HSE they tell us..er..its a bank holiday weekend - Saturday? HSE are using all the publics disabled accessible taxi's? huh?

 

The bloom office try to find others, one guy goes down to the phoenix park monument to try flag one down, no luck.

 

3.40pm- after waiting 40 minutes we decide to go under our own steam to the LUAS .

 

We bootle through the park stopping for ice cream. see the deer. sunshine with showers.

 

4.15 pm arrive Heuston LUAS

4.30 pm on LUAS to Connolly station

4.40 pm - at Connolly Station - no DART train until 5.20pm

4.40 pm - 5.10pm cuppa tea, loo stop in station.  

5.20pm put on DART by ramp man

6.30pm arrive Greystones

 

starts to spit rain

 

7pm - arrive at my door, the heavens open.

 

shattered is not the word.

 

Did I enjoy my day - yes

Was it fun - mostly

Was it easy - No

Did I learn a lot - yes

Could it have been better - Yes

Am I glad I went - Yes

 

what's my verdict ...the Bloom 'disabled  accessibility' needs more work on it, but cannot fault the kindness, respect and help we did get. Marvellous.  but it was

 

Bloom -ing difficult!

 





Primary Care HSE - 'assaults' on the Patients - unrestrained

HIQA ; that group of dedicated inspectors of residential care for disabled and older people , in my view do a great job.  I've heard them criticised for a too much reliance on ticking boxes .  However when HIQA rules an establishment to be failing, We need to sit up and notice. Largely we do.

In todays paper HIQA tells us of inspection and regulation of residential care.

http://shr.gs/42pnBHD


But what of disabled people being cared for in the community by the HSE primary care teams (PCT's)?  How good is primary care? who regulates it? who inspects it? where does the service -user/client/patient go when things 'go wrong'?

the answer to that is HSE 'community care' is largely unregulated, un-inspected, have free reign to just 'do what they like'.

Service-users do have a complaints mechanism in 'your service - your say' but 'investigators' of complaints are not trained, not independent and are invariably the line managers of staff you are complaining about. Its designed, conveniently so. For the 'conflict of interest' protects the HSE staff - not you!

In these cases no line manager is willing to sanction his/her own team member. 'The bonds of brotherhood/sisterhood' (to borrow a phrase from the clergy abuse sector) are strong and difficult to break sufficiently to sanction or improve practice. or to offer JUSTICE to he complaining service - user.

in essence, this set up means you have no hope in hell for justice as professionals 'close ranks' against the client.

I am sufficiently knowledgeable, given I am a service user who HAS complained, to know the outcomes of a complaint against the HSE services in community.

Having complained - as is my right - about several aspects of my care as an adult with a Rare Neuro-muscular disease I have been scapegoated, vilified, denied service and demonised throughout the HSE hierarchy for daring to complain. Ditto, my twin, who has been, arguably treated infinitely worse. 

The vilification is not 'kept local' either, it travels the length and breath of the HSE Hierarchy, and even disseminated to TDs and Ministers who might enquire about the service users complaints.

Thereafter TDs and Ministers drop you like a hot coal.

when obtaining our notes under the Freedom of information act (FOI) we discovered therein that we had BOTH been called 'serial complainers'. http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwi-1OyOyp7UAhUFLsAKHZkcCw8QFggkMAA&url=http%3A%2F%2Fwww.herald.ie%2Fnews%2Fcalling-disabled-twins-serial-complainers-is-unacceptable-says-td-35401611.html&usg=AFQjCNHQq3l5pepvmirlESgzkIvhv7qeKQ

We then complained again under 'Your say-your service' arguing we had RIGHTS to complain. That in fact, we did have genuine complaints to make, they were NOT vexatious.

The complaint was investigated by an independent investigator (this was unusual and the only complaint to be farmed out to an independent investigator - he was a former ombudsman) who upheld my complaint and robustly castigated the HSE. Robustly.

He recommended the HSE apologise, 'own responsibility' and mediate' to improve matters. the first has happened the last two are bogged down in HSE resistance, prevarication, and blocking.

the independent investigator castigated the HSE for chaos of complaints processes, poor, inadequate training of the HSE manager who first called us serial complainers' and a total absence of upholding  our 'right to complain' and 'natural justice':

The references made by Ms [name of manager] in the email of 20^th December 2012 were sweeping in nature and without an opportunity for either sister to comment or make any representations in the matter. (B investigation 14^th January 2015)

We had not been afforded 'natural justice'.

This is endemic in the HSE .  Community living under the HSE for disabled, ill, older people is a veritable nightmare.

You, as client, have no protections. Everybody knows it,  Silence is coerced by fears of  'punishment' and withdrawal of care needed. Everyone knows this too, but few challenge it for fear of the repercussions. and there ARE repercussions.

The patient 'grapevine' is scathing and often critical and angry regarding how they are treated by HSE PCT's.  We are not the only patients in conflict with a powerfully 'abusive' mafia-like health care body.

'Rights' and 'due process' (such as a 'right of reply' or 'representation') are not observed, are treated with derision and unnecessary as the HSE seek to demonise patients who complain. "how dare they?" 

Services ARE withdrawn or not given. In fact the HSE have full permission by the patently inadequate,  self-serving complaints procedures to say what they like of the complaining client ...and believe me, they do!

It takes either courage, guts or stupidity to take on this Mafiosi

Many are too afraid to do it.

The Irish HSE as the organ of death

Who kills in Ireland?   the thief? the robber? the murderer? the paedophile? the insane? your mother? father? brother? sister? your husband? boyfriend? wife? Lover?

Anyone can be a murderer.

Murder in the criminal sense is killing of the body. extinguishing life . to stop the breathing. It is devastating and the annihilation extends to all who knows the victim. The loss kills the soul, the pain kills hope. criminal murder is rightly punished. if the perpetrator is caught.

But what of 'death-making', 'death-promoting', 'death-wish' . Pernicious actions to facilitate the wrongful death of another. Either quickly or slowly.

'death-making' is not just killing of the body, it is annihilating living. it is prevention of living, it is freezing of hope, joy, enthusiasm , it is imprisonment , confining expectations, dreams, all that LIVING means.

Living is not just about breathing or physically existing. LIVING is exciting, happy-filled moments that most who are well, are able to have.

Those of us who are sick or disabled are NOT allowed LIVING.

Allowed? oh yes, when unwell, sick, disabled, old we need permission to LIVE and its simply NOT given.

We have NO permission to LIVE.

Not allowed through the front door - the BACK leads to DEATH of who we are - human, citizen, 

 

Once you become sick all expectations of LIVING are supposed to be dropped. Its unreasonable to have hopes, dreams, ideas, creativity, LIVE.

And the organ of DEATH in Ireland is the HSE, supported by the Government - the State . 'The Health Service Executive' .  These entities profess to WANT us to live whilst curtailing, restricting, denying LIFE-giving help.

The government and HSE killing us with cuts and neglect and refusal of proper care and INDEPENDENT LIVING

 

We Crips, Sickees, Oldies all know what we need. NEED. but our voices no longer count. Others decide what's best for us. others have power and control OVER us. Once sick, once disabled, once old;
 surrender all power and control, hand in your citizenship...surrender everything...you don't have RIGHTS, nor POWER, nor CONTROL.

 what we 'need' is reframed by the HSE as 'wants'.

We want a Personal assistant (PA) but its NOT a 'need' they say.
We WANT independent living, but its not a NEED they say.

They are wrong and deviously, death making wrong.

We NEED PA's to live independently

 

we NEED independent living to thrive, live and enjoy.

going swimming with your walking stick is LIVING

 



HSE and government say we NEED home care support - we say we NEED PA support. these two mechanisms are NOT the same. the former restricts and maintains power and control by the provider over the recipient.

The latter, a PA - frees and lets the recipient hold the power and control. The latter is INDEPENDENT LIVING, the former is imprisonment in the home. You will be fed, washed, dressed. You will be clean. but you won't be LIVING.

The government and HSE are into 'death-making'. that death making that denies and shortens your life, and/or (its usually both) death making that kills your dreams and hopes and LIVING.

The crap second hand wheelchair given by the HSE to a woman with a neuro-muscular degenerative disease - DEATH-MAKING provision 

If we disabled, sick, old people are not very, very careful we will accept the lesser HSE given path of death-making rather than LIVING.

Incontinent pads given by the HSE community nurse  to a woman who has a neuro-muscular disease and who needs a PA to take her quickly to a toilet not an incontinent pad she must wee and shit in until home...  and who may I ask will help her 'clean up' once home?

 

Improvements grants to the home are helpful but beware...the real reason for them is to empty hospital beds and free up nursing homes, both in short supply. Its not about your LIVING. not really.

Home Care is NOT about LIVING but only about feeding, washing, dressing so that you are nice and clean, fed and watered,  in your now easily accessible home-prison.


We seek LIFE, we seek LIVING....and ALL it means.
Not death, or death making, or anything that imprisons or dis-empowers us.

We seek POWER and CONTROL over our own lives and THAT is something neither the STATE nor the HSE will 'allow'.

LIVING is NOT their agenda...DEATH-MAKING is.

Euthanasia is all around me

Euthanasia

is all

around

me

I see it in peoples eyes, hearts , mind when they see this old, decrepit CRIP.  That sickly, sweet, 'feel sorry for you - but aren't you brave ' look of pity and patronisation. 'Why would you WANT to live - in a wheelchair' look. The look that says, 'you are NOT like ME - poor YOU' .  You are 'other' and 'other' is 'not NORMAL'.  Poor, poor you for that wretched wheelchair, body, crippled, disabled CRIP you inhabit. Let me free you - Euthansia.

I hear it in Varadkar's statement that he will lead for those who 'get up early', the non-crips, who actually WORK, produce, slave for this money making country. Your crippledom is not productive. you TAKE the freebie benefits, you have high needs, you are expensive, and you DO NOTHING to get these freebies so hey, I can't be giving freebies to CRIPS who are NOT productive.

I feel it in my heart as my GP fails to fight my corner wondering if the 'waiting room' of Euthansia - the nursing home is better for me. No Margaret you MUST accept your crippledom, pain, distress and NOT expect care in the independent community. You NO longer deserve that independence, your own home, your life, your LIVING.

I know it as the HSE refuse to support my LIVING , but rather gloats at saving money and hastening my death by passive Euthanasia.  The sort of way they have of blaming you - the CRIP - for their hardship as they face YOUR resistance, fighting, arguing for Independent living. "I come to tell you YOU do not deserve Independent living. You can't HAVE independent living. you are a CRIP, leaching monies from the state, Got it, have you GOT IT Margaret?" 

They'd rather

Kill me

put me in a nursing home

deprive me of Independent Living

Make me suffer

deny life

than pay one penny towards keeping my old, crip body, ME alive.

But here I say loudly

I WILL fight

I WILL LIVE

I WILL WIN

Why?

Because I am 'The Crip with a whip' and I'm NOT for killing. And....Ha! There are TWO of us!  The 'Serial Complainers' Strike again!   We will NOT be cowed.

We ARE 'The CRIPS WITH THE WHIPS' ...

 

 

 

 

 

 

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.

A desperate need to report the 'old' story: alleged 'Retaliatory Action' by the HSE

It is with concern that we all wonder whether the MEDIA is really truthful or transparent. Trump in America has at least proven something...fake news abounds. Lies and dirty tricks mask as truth and carried in our newspapers as valid news.

But there is STILL truth. There is still the integrity of many good journalists hell bent on TRUTH. Without them the awfulness of life cannot be uncovered. We need these journalists in Ireland now more than ever.

As you all know I've been 'in the news' a lot.  In most cases its to do with my campaigning for justice for sick or disabled people.  Or my other hearts love - justice for victims of child sexual assault, sexual violence and rape and Clergy sexual abuse of children and of adults.

                                                                                                                                   

Yes I got into the news. and it made a difference. it shifted the false to THE TRUTH. It opened secrets to the masses, It uncovered that which those who wanted covered up. It broke those secrets.

YES, DISABLED children are sexually abused, raped, sodomised. That was 'the story' in the early 1990's. I broke it. It changed child protection in the UK where I lived and worked.

YES, there are CHRISTIANS of all denominations that were sexually assaulted, raped, by their church going, god-loving parents. that was 'the Story' in the early 1990's also. I broke it (at least in the UK) . 

YES, Christian Clergy, men who wore clerical collars DID sexually assault, rape, make pregnant Christian women who sought help, counselling, spiritual direction and it was NOT an 'affair'.  That story in the mid 1990's was covered but rejected largely by the masses who blamed The WOMEN for their own violation. I researched this area for my PhD.

YES, Eric Gill the great Catholic sculptor and calligraphist, who carved the Stations of the Cross in Westminster Cathedral, London, WAS a rampant sexual predator who targeted his children, maids, prostitutes and animals. a story that I uncovered (at least in the public domain) in the 1990's to horrific cries of 'censorship' because I wanted those Stations of the Cross removed.  Why I asked, should those of us sexually assaulted as children or adults, be asked to meditate and pray at these stations carved by the hands of a sexual predator? This argument was called 'censorship' and the outrage of my premise was to do the 'uncovering' of Eric Gill's secret for everyone. But the Stations remain and are glorified by the Catholic Church.  Nothing new there.

But the story in Ireland that I try to uncover is still NOT uncovered.  Why? FEAR, fear of an institution so powerful it has the chains on us all. Men, women and children, parents, sick children, sick adults, disabled people, elderly, mentally ill people.  It chains the politicians, it chains the charities, it chains the press. What is this malevolent entity. It is the HSE - The Irish 'Health Service Executive.

Am I the first to 'break this story' no, I'm not.

In 2015 a report by academics in the NUI Galway wrote of a terrible claim
which was reported by Noel Baker of the Irish Examiner:

http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=0ahUKEwiNyYmX99fRAhUpCcAKHfS5BcIQFggZMAA&url=http%3A%2F%2Fwww.irishexaminer.com%2Fireland%2Fparents-allege-hse-retaliation-against-them-327823.html&usg=AFQjCNGgvhsqzeWtOisL_R51CIzNn23-nw&sig2=wIkusEQ23_XDpRvNw_L9BA


"Parents of Children with disabilities have claimed they are victims of "retaliation" by bodies  schools and HSE if they complain about how their child [was]not being able to access services"

He quoted the NUI report further:

"Parents consistently spoke of difficulties in accessing the services their child needed ...many parents experience retaliatory actions when they make complaints against a state body for failure to deliver services...one parent who made a complaint regarding an inaccurate statement ...said that her three children who all had special needs were excluded from HSE services and the family had to pay out of pocket for the support they needed".

My first 'run-in' concerning 'Retaliatory Action' with the HSE and a Charity came when I was professionally obligated to 'whistle-blow' abuse of Disabled people in 2003.  That 'whistle-blowing' resulted in two major inquiries of the Brothers of Charity and the Western Health Board (WHB) now the HSE, by independent investigators.

I was now NOT the favoured 'expert consultant' brought over from London to train Brothers of Charity staff after whistle blowing.  The Director of the Brothers of Charity at the time was allowed to write in a HSE  Professional Investigation (sic) report, which was published and distributed widely in HSE circles about my 'unprofessional' work. Furthermore he was allowed state (anonymously) that I had not reported any abuse I might have witnessed. I sued, and won.  I HAD reported abuses I knew of, in writing and NO-ONE was going to impugn my very high professional expertise and reputation by calling me 'unprofessional' as a Retaliatory Action'  to cover their own failings. It took ten years to 'clear my name,

http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0ahUKEwjG7OaZ5dfRAhXKKMAKHdiZCrYQFggnMAI&url=http%3A%2F%2Fconnachttribune.ie%2Fsettlement-for-former-consultant-with-brothers-of-charity-galway%2F&usg=AFQjCNEPzqObaBU2JSVQ753l84MlAGTlyA&sig2=XNeBvNlhslP79PbyEXy1DQ

My second more recent attack by the HSE of 'Retaliatory action' by the HSE comes not as a professional but as a patient with a Rare progressive Neuro-muscular Disease. Retired due to this disease and living in Co Wicklow, I had cause to complain about lack of services of care and support. so had my identical twin sister Ann, who has the same disease. We went 'public' to the newspapers, we sat outside the Dail, we went on TV. What did the HSE do?

They labelled both of us 'serial complainants' under the HSE policies of Vexatious complainants. I only discovered Ann had been deemed as such a YEAR after a full team of ALL MANAGERS of services in Co Wicklow met to declare her officially a 'serial complainant'.

I found this out when she obtained her notes under 'freedom of information' (FOI) and I read them. Delving further I asked for the policy documents which advised me the person had to be first warned, have a right of reply and if necessary legal representation. None of this happened. She was deemed a 'serial complainant, by every manager in the service, behind her back, without her knowledge or without any right of reply or representation. We would never have known but for obtaining the HSE files under FOI. It had travelled the length and breathe of the HSE . To do irreparable damage. The 'bad-mouthing' by the HSE sticks. We know it. We feel it.

So I got MY notes and I found a senior manager telling another senior manager by email, that we were 'serial complainers', I was included too.  This manager then sent the email to ANOTHER manager. The gossip ruining our reputation, again travelled the length and breath of the HSE management.

I officially complained. My complaint was upheld by a former ombudsman, acting as independent investigator.  He castigated the HSE for not allowing us a fair 'right of reply' , for lack of due process and fairness. For not investigating our complaints about services and recommended the HSE 'apologise, (they did) own responsibility (they said they did)  and enter mediation to sort out our care services (so far not yet)'. He said we had every right to complain, and that several complaints did not constitute 'serial complainants' and each had to be investigated.

We are now 'in mediation' with the HSE about our care and support. Are they sorting the problems? Not a bit of it. Same old 'run-a-round' to deny us the care and support we need. They know we cannot afford to sue them.  There seems NO obligation on them to put in a care and support package WE need. No Disability Act 2005 makes a damn bit of difference and we disabled people have no Human Rights legislation as Ireland is the ONLY EU country NOT to Ratify the UN Convention on Rights for people with Disabilities. We are neither Equal or Human it seems.

The HSE 'game-playing' is exhausting and we allege, abusive. We call and name it, we allege ABUSE but there is no HIQA there to investigate alleged HSE abuse in the primary care, by primary care professional's  or managers in local communities. The 'Your Service - Your Say' complaints processes are useless exercises, as HSE managers of those you complain about investigate their OWN workers. Neither transparent or independent. There is a gross 'conflict of interest'. There is No TULSA to inform, no media who will highlight it.

HSE Managers have free reign to do as they like leaving sick disabled, elderly twins with a Rare Neuro-Muscular degenerative Disease without proper services. They can tarnish our reputation, and have, right to the top of the HSE chain, even to Enda Kenny with impunity .

No-one is willing to break the chains of malpractice and abuse by HSE managers at primary Care level. No media willing to Run with the on-going saga. Its NOT a 'New Story'.

Yesterday a Journalist asked "is it a NEW story", "no" I replied, "its been on-going for over 10 years" . She said she doubted any newspaper would cover it because it was NOT A NEW STORY. 

In one respect , she's right. its NOT a new story. the HSE have punished clients for years, clients who 'cause trouble', whistle-blow', complain.

And vulnerable people will continue to suffer until the media have the courage and persistence to cover this OLD story of Abuse; called 'Retaliatory Action' by the HSE.

who is willing to break the chains..Galway NUI did, Noel Brown of the Examiner did

The Kennedy Twins did.....

But it must continue. It cannot stop until it IS Stopped..'Retaliatory Action' by the HSE is ABUSE. It's got to be named and STOPPED.