I hate the word 'carer'.

Why are disabled children the only children whose Mothers, Fathers, sisters, brothers morph into 'CARER's? Where did 'Mummy' 'Daddy' 'Sister' 'Brother go' ?

Why do disabled people also need 'CARER's'?

"Who is your 'CARER'?"  "Where is your CARER?" "they need a CARER"

CARER - a person who cares for you. Well that's OK . Most people need CARING for. My sister cares for me, I care for her. Boyfriends care for girlfriends, girlfriends care for boyfriends ...its called a relationship, love, to LOVE. It's a human reciprocity that keeps us all flourishing.

But we DON'T call these people in our lives 'CARER's'.

when we use 'CARER' for disabled children, disabled adults, old people we imply 'they' (people like me) cannot do the things others do, are fragile, are incapable, are reliant on others just to live. And added to this the 'carer' must be a saint to 'care' for you. you are MADE TO FEEL this. its forced down your throat.

"you should be grateful" - oh heard so many times.

Well, such a construct of diminishing disabled people and old people needs challenging.

When was the last time, you 'normal' (non-disabled person) needed help?

did you need help when the washing machine broke down? Did you call the engineer a 'carer'?
did you need help to learn how to use your computer? Did you call your tutor a 'carer'?
did you need help learning to drive? Did you call your instructor a 'carer?' (even though he needed to take care you didn't crash that car)

Ah Margaret ....don't be daft, that's not the same at all. 
Isn't it?

Several things the word 'CARER' provokes in other people

1. You can't go it alone
2. isn't the 'CARER' wonderful?
3. you must be so grateful he/she is 'caring for you'
4. You are 'not like' anyone else

Disabled children are growing up with the word 'carer' ringing in their ears. EVERY god damn person is a 'carer'. they are losing ...losing who they are, their identity, where they fit in.

Being 'CARED' for slots you nicely into a charity model way of thinking.

Where you are seen as burdensome, heavy duty, exhausting and a drain.

it provokes the "isn't she good for caring for her/him?" ...mentality.
It provokes awards for 'Caring' for disabled siblings or family members.

It diminishes the disabled person. Its humiliating. Its segregating. its 'othering' in a way 'caring' amongst non-disabled people does NOT do.

I will never have a 'carer'. It gives someone else too much power and control over me.

I accept a 'personal assistant'. Because the ethos here is working together, is not couched in the language of 'poor you' or 'poor carer', or 'oh so saintly' carer'.


I've said this before and I'm criticised for it. Non-disabled people feel I'm judging the 'carer'. I'm not. I'm challenging how society has created a role, a distinct role, for those of us who are disabled and need assistance.

Its patronising
segregating
diminishing
and does not make me feel in control, powerful, able, capable or with any role myself in society.


So Mums, Dads, brothers & sisters and all others STOP calling yourself a 'CARER' .

teach our disabled children about 'Personal Assistants'.
teach our disabled children 'own' themselves
to be in control and powerful

When anyone asks me "Where is your CARER?" Asked by airport personnel, train guards, shop keepers or even someone I've just met I say....

"I don't need a CARER, I'm travelling alone, I CAN do that you know - I'm all growed/grown up"!

if my PA is with me I introduce her. "I don't have a CARER, I have a PA - Personal Assistant"

Thank You for allowing me my own Power and Contriol.

My identity
Myself.

Buying your health - is it morally acceptable?

Got the money - can live

not got the money - can die

I live in a country wherein the Constitution does not give us RIGHTS to health care. Yep....repeat: we do NOT have any RIGHTS to health care in Ireland under our constitution.

Is that why successive governments have simply not bothered about those who cannot 'buy health' in any shape or form?   They don't HAVE to supply a public health service.

and arguably they don't. Though in reality we DO have a 'public health system'.

The government would say everyone is cared for.

But being on a waiting list is not health care
waiting three years is not health care
being discharged because the consultant doesn't like you is not health care
having no service for rare disease patients is not health care
4 sessions of physio in 6 months is not health care
being given incontinent pads/knickers instead of a personal assistant is not health care
lying on an A&E trolley for 8 hours with no pain killers given (in dire agony) is not health care
lying on same trolley in your own faeces for an hour is not health care

I could go on.

Yesterday I bought health care. I'm not proud of it. but I was seriously worried. I am a socialist, feminist, equality campaigner. buying health care sticks in my graw. it goes against all my fundamental beliefs that health care should be free, state provided and available to all.

Why? because we are ALL, part of the State of Ireland, ALL contributing to keeping this State alive. We are ALL contributing. From the poorest to the richest . (though personally I think the rich take more than they give).

But I DID buy my health care yesterday. I walked into a private, palatial, Health clinic. The décor reeked 'rich', status, and privilege.

The pond with goldfish and a little boy squirting water on an umbrella in the entrance atrium was symbolically calm, nourishing, cleaning, wholesome, peaceful and...er...rich.

the see through fancy lift to the 4th floor ...said...money

the vegetation, not sure whether real or plastic, screamed...different...rich

the consultants rooms were pleasant with warm respectful receptionists, newspapers and 'Hello' magazines (suitable for the Rich)

The consultant was equally warm, respectful and exuded patience, explaining, taking time, listening.
(you pay for that)

In fact you really saw where your money went. The minute you walked through the door.

But I bought health yesterday because a public system deemed my eyes were fine...when I knew I couldn't see well. When I knew they were definitely NOT fine.

you know what? I was right.  I had Glaucoma and Glaucoma damage such that my visual field in my left eye is now half of what it should be.
I had a cataract in my left eye causing double vision.

I bought that diagnosis...
I bought the treatment

I will, NOW, not go blind.

Patient Power - 'enough is enough' - seize power and control NOW

Medicine has 'gone too far'.  Patients rights are NOT upheld. Doctors hold all the power.

Here in Ireland if you are sick, disabled or old you are expected to hold no power. There is always a 'way around' depriving you of autonomy and agency and one way round is to invoke your 'unreasonableness', your lack of knowledge, your state of mind, your illness.

This morning I wake and look at the newspapers and find THIS:

http://www.breakingnews.ie/ireland/pregnant-young-girl-detained-under-mental-health-act-after-seeking-abortion-793163.html

If we looked closely would we find that this psychiatrist had a Christian fundamentalist background? Would we find he/she had an authoritarian/autocratic personality? - used to wielding power over patients. Psychiatry is the most powerful profession to belong to. I have long believed it is the profession one enters to enable control over people. Its a pernicious profession.

But psychiatry is not the only field holding and wielding power over patients. reaching consultant level many medics (but not all) believe they have been handed the 'position and permission to control' the patient.



I have met very good consultants who do manage quite easily to have an equal/collaborative relationship with me. these doctors tend to be more mature, more relaxed, more likely to welcome the patients views. They are kindly, compassionate, and respectful. They do not feel the need to have power and control. They are just very nice consultants. They listen. they hear. they respond, they share, they WORK WITH YOU - TOGETHER. They are as rare as hens teeth.

 
With a rare disease, a complex disease, you get to know  medics and it is a hard road if you are unfortunate enough to be lumbered with a power hungry consultant. arrogant and all knowing.

but patients have rights. rights to autonomy, to respect to agency and power over their own body.

some doctors readily agree to patients , for example, making decisions over whether to go for extensive chemotherapy or live out their lives. whether to have a surgery or not. Whether to take that pill or not.

But this is all 'allowed' only after the doctor has been the TRUTH - TELLER of your condition.

No Consultant likes or welcomes these decisions made by a patient...

"I would like an MRI to check for..."
"I want to see Dr .........to discuss ....."
"I want to have ......medication for a trial"
"I would like a course of antibiotics for...."
"I ask you to fill out the E112 forms for overseas treatment please"
"I think .....test would be good to do"
" I think this treatment should be tried"

Because they are pre-fixed "I ..." this immediately takes power and control away from the consultant. They don't like the "I" part.  That part where YOU state your wants. Where you state your medical view (you are not supposed to have one). where you control....

No, these and other patient led ideas are strongly rebuffed by the medical profession.  "we cannot have PATIENTS directing their treatment like this". 

Well why not?  Because it lessons the Dr power over you!  Doctors are trained in medicine...you, the patient, know nothing. You are NOT trained.

But increasingly patients are taking power. The patient becomes the 'expert by experience' , We know our body, we know our disease, we know ourselves.  No matter what the Consultant says he knows....he does NOT know how we FEEL. 

That's me - having special tests in Newcastle -UK

But in Irish medicine the power of the Doctor is huge.  We can be denied a service on the say-so of a doctor. We can get a service on the say so of a doctor. And the pernicious thing is a Doctor can get their colleagues to agree with them very easily. Hospitals will defend their doctors to the hilt. The patient is always at fault. No doctor will challenge another...or very rarely.

But if he dislikes you, because you've taken power away from him, you must be punished. And punished you WILL be. No doctor likes a powerful patient. Its bruising on the medical ego.

Punishment is easy...and has many manifestations.

a) withdraw service "go and seek another doctor if you don't like me"
b) Withdraw a treatment "This patient would like....I do not feel the need for....so I am not recommending...."
c) Withdraw support for overseas treatment
e) defends position even in the light of obvious failures.
d) bad-mouth the patient (not difficult to do)
e) make appointments less frequently
f) refuse to answers emails or letters.
g) blame the patient.
h) refusing to advocate for better primary care services
j) minimizing your condition.

and more.....

Those of us who are patients do have rights. We can hold power. We can hold Control . We should hold power, but many relinquish power with the belief "doctors know best" . Actually in todays medical world where medicine is about saving money, not necessarily about your care...you need to hold power.

Here are some 'pointers to holding power and control':

1. Know your condition/disease better than your doctor. (he won't like it, but you need to be able to make your own decisions and NOT be coerced into a treatment or go without a treatment for lack of knowledge.

2. Keep your own patients notes/file.  Get copies of all test results, all letters, all information about you to put into your file. Call it 'the expert patient file'. Bring it to every appointment.  have the Consultant write in it at every consultation, e.g.  what he thinks and what he intends to do. record all changes to treatment.

3. record your consultation. Write notes immediately on exiting the doctors room. Write what he said, what you said. Your requests, his responses.

4. Never, ever go to a doctors appointment alone. bring a 'witness' and have your witness sign your written notes on the visit as true and valid.  Have your witness write their perception of your consultation.

5. Do not give your consultant permission to speak on the phone to another doctor, your GP or anyone else without your presence.  There's too much 'backroom' stuff going on here. And it is NOT always to your benefit.

6. insist all letters to any other person is cc'ed to you.  (this is mandatory in the UK but not in Ireland)

7. obtain your files under the 'freedom of information' (FOI) act. you are entitled to have your file. read your file and question any redactions (things blanked out )

8. be vigilant. Don't let things slide or drag out for months. chase up results, appointments, tests.



am I a paranoid patient?   possibly...but I've learned the hard way.

medicine is at a crossways...and its going down a bad route.

it does not always respect your need for good expert treatment. If patients don't take control of their own medical care we will be the footballs in medicine. to be kicked about at a doctors whim and wish.

I'm taking power ad control.

that's me at a protest...



Its MY body, my life.

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.