Take-Over of my IPC

Dr Margaret Kennedy

The year 2018 is nearly over , 2019 just around the corner.

We ponder the good and the bad at this time - well I do. And I've considered more than ever my perilous state of health. Simply because with a neuro-muscular degenerative disease you are daily reminded of 'disintegration'. The downhill slope.

Being disabled is tricky enough in a world of discrimination and abuse towards us. But being disabled and becoming more so daily brings a certain underlying dread of demise and inability - dependency and death.

For now, not only are we disabled we are 'taken-over'.  Others decide what we feel, what we can/cannot do, what we must do, and generally 'take-over'.

 I fight for my IPC

It's as if my autonomy has the disease. My power & control 'infected' , 'damaged' , 'lost' by my disease. and 'take-over' is automatic, sensible, necessary to divest me of my independence, power, control, decision making. For most around me this belief is almost universal. I'm not the only one divested of IPC (Independence, Power, Control). All disabled people, all older people, all vulnerable people by virtue of their 'state' are denied IPC.

Twins with same disease

Both resisting 'Take-Over'

Lets look closer at IPC 'Take-Over'.

Doctor's/Consultants:  a conversation.

Dr: How are you?
MK: I'm much worse
Dr: let me examine you
MK (gets onto plinth)
Dr:  (says nothing)
MK: describes difficulties
Dr: takes notes, says nothing.

end of consultation. This 'Take-Over' is subtle.  A complete ignoring of my reality. I'm still breathing, still, walking - a bit - so all is well. My sense of 'owning' my disease, facing reality is shaken by the utter disregard of this Consultant. I'm stressing my downhill slope, I'm holding on to IPC needing his support to do so but he's just using 10 minutes allocated to chart my present situation. we do not meet on any level. I wheel out of his room feeling my IPC has slipped down a further notch as I could not make my reality heard. He's not the slightest interested in my IPC but rather my brain neurons. and even that is debatable.

I've since left this consultant after 6 years of horrendous neurological 'care' - the new neurologist is not much better and I now realise 'care' is not on offer in Ireland. You are but a body and have no IPC to change THAT reality. Your humanity; IPC is totally disregarded. It's not a medical issue.

Degeneration is all I'm 'allowed'.

 

Not allowed in ?

Another Consultation: Nurse assessment of Needs

Nurse: can you wash yourself?
MK: yes & no , describe what I can, cannot do
Nurse: Can you dress yourself?
MK: yes & no - describe the bits I can do, cannot do
Nurse: can you cook?
MK: depends on what meal I'm trying to prepare

She grades scores of what I can/cannot do. however she DECIDES. She decides my competency. my needs, my abilities. all based on my body. there are no social, emotional, psychological or IPC questions. They don't count in the scheme of my 'needs'.

When I read her report I understand I've been graded 'down' so as to deny funding for greater services. it's deliberate. It's an exercise in her Power & Control, not mine. For I've really no say in the scoring. and it's the scoring where she holds PC and uses it. If I say I cannot put on my wheelchair mac in the rain outdoors and demonstrate, it is not scored for her scoring only relates to in house ability. She's not interested in my IPC or how to improve it. all she's interested in is that I'm clean, dressed, eating. I'm only a body to be kept alive. no more than that.

The HSE - Health Service executive.

This is the community service designed to support people like me in Ireland. You tell them your hair colour is brown and they'll say it's not - it's blond!  Daily games of IPC. There's no such thing as 'working together'. it just does not exist. They tell you the level of IPC you are allowed.

They deliberately do not SEE my muscle myopathy, the weakness, the fatigue therefore it does not exist. I cannot tell them - I've tried. Their understanding of me is purely based on economics. budgets, saving the coffers. So I must NOT be judged as a person with a degenerative disease at all. Good God, that is NOT policy at all.

 

IPC is not a plank of HSE 'care'. They don't want it to be. it cannot be, because they have to control budgets and giving me IPC would be too costly. So every effort is made to not hear me, deny my disease, downplay my needs. Deny services or access to services. That's policy.

 

Yes A farce

Family

Being the youngest of a gaggle of older siblings is tough shit! I'm 66, next up is 73, then , 76, then 77. Now I'm not expecting care from older siblings. They are all ill in some way. mostly heart disease. No, they cannot be my 'carer's'. but they do decide my IPC. Oh yes, they do. They decide I should be in a nursing home, or supported living, or residential care. My wish for IPC is seen as stupid, not sensible. if I complain I need more support the stock response is "you need to be in a nursing home".

not only do they decide how my IPC needs to be 'taken-over' by someone else, they decide how I do things. "don't bring your wheelchair or PA (personal assistant) to the party" was a recent IPC 'take-over'.

 

there was such a furore over my choice to do this I was harangued by all siblings and so capitulated. I was told to 'apologise' to the sibling I had argued with. (over my dead body).  I was even told that sibling had NOT said this. I have it by text on my phone. evidence of that particular IPC take-over.

So as I leave 2018 I've learned what I will fight for in 2019. my own IPC.

This is my sole fight. IPC. No-one will tell me what level my disability is at. no-one will tell me where I will live. no-one will tell me how I live.

I will define who I am now.
I will hold on to MY IPC.
no non-disabled person, in whatever capacity, will decide the quality of my life.
I will not be 'reduced',
forced to acquiesce to ableist agendas.


I'm sick of the 'Take-Over', Tired of 'Take-Over'. raging at ableism, discrimination, annihilation, denial of my IPC.

So roll on 2019...IPC is my Goal. I will win.

 

Are they really listening?

PA demonstration 

 

Staying Alive depends on your Status in Ireland

More and more I realise with horror how the health service in Ireland operates.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=13&cad=rja&uact=8&ved=2ahUKEwia8Pz9kfndAhUrLsAKHbgABToQFjAMegQIAhAB&url=https%3A%2F%2Fmagill.ie%2Farchive%2Fhealth-service-catalogue-crises-and-failures&usg=AOvVaw3ZkJk5yqDQm1AYpjfT9_LF

It's not based on "You need help -you'll get it", but rather "are you insured"? because if you are not, you are not going to be diagnosed, or treated anyway soon.

Add to that mix, if you are a woman - misogyny and paternalism

Add to that your position as a 'useless eater'.  Hitler's phrase for those deemed to drain the state of resources, and were killed. Ill, disabled people, older people were discarded. Made to wear a black triangle. https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=8&cad=rja&uact=8&ved=2ahUKEwiz67Hgg_ndAhVXOMAKHerOATIQFjAHegQIBxAB&url=https%3A%2F%2Fwww.theholocaustexplained.org%2Flife-in-nazi-occupied-europe%2Fnon-jewish-minorities%2Fdisabled%2F&usg=AOvVaw0yRVssJ_0VdWG2PvrMZSLc

Today the 'discarding' is more subtle - but it happens. What I notice in Ireland is the withdrawing of treatment if you are a woman, deemed too 'pushy', too demanding, if you are disabled, old or 'not worth it.

Why else am I stopped from getting a diagnosis of my rare disease?

Why else am I not able to access treatments such as physiotherapy, hydrotherapy, rehabilitation, neurology, overseas specialist help as a rare disease patient.

Is it because I'm about to pass my 66th birthday? I am a 'useless eater'. I'm not economically 'viable' , I am not 'worth it'.

yes it is. definitely, yes it is.

I know it, I feel it.

So WHO exactly gets Health Care in Ireland?

The insured (depending on your policy), well off, the rich.

I am insured. I'm not well off and have to make a judgement call as to whether I'll use my insurance. For my policy does not cover all costs; no-where near it. So I can't pay out too often. A consultant fee of 250-350euro must be paid there and then and only a fraction of that is refunded by my policy (not a brilliant one - though good for inpatient care)

But there's no doubt about it being insured brings some privilege and health care.

Take for example my ability to get a rheumatology appointment within days (albeit I was lucky there was a cancellation) because I have health insurance.  Had I relied on the public health system I'd have had to wait possibly years. no kidding - years!

Take for example my ability to have cataract operations within weeks whereas public patients can wait up to 7 years and risk blindness in the process.

Take for example my ability to get a CT /MRI scan within weeks whilst public patients must wait years.

Take for example my opportunity to get a hip or knee replacement within weeks whereas I'd have to about 7 years for public care. A local woman in Greystones waited that long for her public hip replacement and was in excruciating agony all those years.

I know that because I can just about pay my annual insurance encroaching 3,000euro per year, I get preferential treatment. I jump queues. I get care.
I am privileged.

How does that make me feel?

Guilty
Ashamed
Angry
so, so angry...
it offends me deeply ... but my fear about my disease affects my moral stance - I know this, and hate it.

Why should this happen? Where is the morality of leaving public patients suffering and languishing on 'lists' for years?

I go 'private' rarely, but when I do I know I'm privileged. I know it offends deeply my inner heart and soul. I roll through private hospitals, am treated with respect and politeness long gone in the public sector.

The difference in Consultants attitude is significant. (though if you're a rude consultant you don't change your spots that easily - I know - there are many atrocious Private consultants too - I've met them).

Irish consultants/GP's attitudes were highlighted in the Scally report on the cervical screening debacle as 'misogynist & paternalistic'. We women were idiots, ARE idiots.

Take this dialogue I had with my GP (a woman) recently. I had seen the rheumatologist and was reporting back:

MK: The rheumatologist says I can continue to take the Mobic (anti-inflammatory medication which had been stopped due to a suspected 'bleed')

GP: I'll wait to get the consultants letter confirming that.

ergo....you might have;

a) got that wrong
b) be trying to pull a fast one to get medication or
c) you can't tell me what to prescribe - only a consultant can,

forget the fact that left me in excruciating arthritic pain for weeks. Forget the fact I'm an intelligent patient. I have no voice. none whatsoever. I'm not to be trusted.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiZhIj5j_ndAhUkB8AKHdKnAnoQFjAAegQICRAB&url=https%3A%2F%2Fwww.irishexaminer.com%2Fbreakingnews%2Fireland%2Finstitutional-misogyny-dr-scally-says-culture-of-paternalism-left-221-women-in-dark-on-smears-868653.html&usg=AOvVaw3qEeB0xqUlK8mBJbLV8jwx

But largely the private receptionists, nurses and doctors treat you with a level of consideration not seen in the public sector.  Where there are huge queues, general bedlam, and harassed staff - overwhelmed with too many patients and not enough staff or resources.

Seeing a Consultant in the public sector can seem like you are entering the gladiatorial amphitheatre where you know you haven't a hope in hell of surviving!


 

or made to feel that somehow you are very lucky indeed to have the appointment, after-all, you are the 'useless eater'. how dare you take up scarce resources. You are expected to accept the lowest common denominator of care/treatment.

you are expected to 'put up' with bad consultants attitudes, rudeness and dismissiveness.

you are not allowed a voice.

But even if you have a private insurance Consultants or GP's can bar you accessing the private sector.   Asking for a referral letter to a private consultant, facility, or treatment abroad you still must run the gauntlet of whether your doctor will agree to that! 

You can't just pick up the phone and make a private appointment, scan, or arrange overseas treatment. No , you do not have 'control' or 'power' even in the private sector. (Unless of course you are a famous person).

and here is the thing - 'power and control' as patients. we have none. NADA, zilch, nuffin!

forget 'working together'
forget 'medic/patient jointly addressing the diagnostic /treatment endeavour'
forget your status as an intelligent patient who knows more about your disease than your consultant
forget HSE complaints processes
forget hospitals complaint processes
forget the Irish Medical council - https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=2ahUKEwiZhIj5j_ndAhUkB8AKHdKnAnoQFjACegQIBxAB&url=https%3A%2F%2Fwww.irishtimes.com%2Fnews%2Fhealth%2Fmedical-council-guidelines-not-centred-on-patients-scally-report-1.3627293&usg=AOvVaw1hl7qB5B8kIHhMEUdqqfUg

you are 'nothing' either in the public or private sector when faced with a consultant/GP. (Particularly if you are a woman with male consultants or GP).  you are merely a 'patient'. which holds no status in the medical field. none whatsoever.

Public patients fare worse - no doubt about it but you can't guarantee any better response in the private sector. I've met three private consultants, two ENT , one neurology who all were appalling.

So my blog is about three glaring issues in health care that need urgent addressing:

1. 'Power & Control' - who has it?
2. Rudeness, arrogance, autocracy and vile manner of some Consultants & GP's (too many)
3. Disparity between public & private access to care and the discrimination, injustice and unfairness of that.

All is far from well in the Irish health care system.

Patients need to fight for their health care like never before and the 'system' is weighed hugely against you.

Yes - health care IS a Human Rights Issue - Ireland breaches our Human Rights in Health care every day - there's no accountability, no sanctions, no change.

We are abandoned by our politicians.
we are betrayed....

Pope Francis visits Ireland - I won't be there

I won't be there...

The pope's coming visit prompts me to write. I learn that his visit is to cost close to 32m euro, with the state up-fronting 20m. That's US, by the way, Tax payers money.

We have a housing crises, a heath service collapsing and we are spending millions on a wee visit from the Pope,

I am disabled with a neuromuscular degenerative disease. essentially I am 'dying'.

My life is limited now in years. the HSE apparently cannot afford to get me a special bed to sleep in.

Cannot afford to give me a decent 'support in the home' package (I'm severely struggling),

Cannot afford to give me physiotherapy/hydrotherapy that would relieve morphine needed severe, agonising pain.

The HSE Cannot do anything but call me (and twin - same disease) 'serial complainers' and say no to all basic services.

I am to die unsupported. Rejected. As all sick, disabled and older people are.

I've experienced that before...

This Pope will eat up our money - desperately needed by sick, older, disabled Irish Citizens.

32million euro would heal so many who need care and love and support. yet we spend it on a sickening jamboree in the Phoenix park.  

I have worked for years supporting clergy sexual abuse survivors. My 'record' with the Church and Pope

picture: Myself, far left front. shortly before I 'broke free' of cordon and 'legged it to St Peters. Many protesters were Italian Deaf people. sexually abused in a Deaf school in Verona.

has been volatile to say the least. I was once 'detained' in St Peters Square by Italian police along with Brendan Butler of 'We are Church' for several hours - our 'crime' ? Just being in St Peters square as we 'broke free' of a cordon corralling survivors of abuse, to stop us going into St Peters Square,  and 'legged' it (Brendan pushing my wheelchair with me shouting 'Go, go, go' . (They did not think a cripple would be a 'protester'!)  to St Peters, whereupon we were pounced on. Passports taken. Waited hours for their return, surrounded by armed police in freezing cold. I was in my wheelchair.

it caused a diplomatic incident with the Irish embassy involved. It was written up in the Irish Times:

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=2ahUKEwiivLDMk_HcAhWhxIUKHTO8AA4QFjABegQICBAB&url=https%3A%2F%2Fwww.irishtimes.com%2Fnews%2Firish-abuse-protesters-complain-at-treatment-by-vatican-police-1.671250&usg=AOvVaw37D5bNt7UtzO3pTnLdpnFi

The vigil in Rome : survivors of clergy sexual abuse.

When, in 2010, Pope Benedict visited London, UK, I was there. I lived in London for over 40 years (now live in Ireland) and had founded a clergy sexual abuse group MACSAS. It's still running and supports clergy sexual abuse survivors of all denominations.

During the Pope's visit we held conferences and press meetings. we demonstrated.

Snap USA & MACSAS UK demonstrate outside Westminster Cathedral London. self wheelchair

 

We shared our stories and the press heard.
 

me sharing the victims of clergy abuse stories - London 2010 my hand rests lovingly on the Survivors book.

We also asked to meet Pope Benedict to hand over a book of survivors stories, beautifully made and  bound by a Catholic abuse survivor.
 

The survivors book of evidence. The ribbons we wore. 'Truth, Accountability, Justice'

We asked the  Archbishop of London; Vincent Nichols, to facilitate us handing it over as our 'gift'. Our voice, our pain and suffering.

 He refused to allow us meet the Pope personally, but agreed to give the book to the Pope himself.

We declined. If we were to be prevented from handing the book over ourselves no-one else would.

We asked the Papal Nuncio to facilitate the meeting, he refused. We asked the Catholic Church's 'safeguarding' committee to facilitate the meeting...refused.

We were banned utterly and completely from meeting Pope Benedict. We were not welcome. the rebuff/rejection was keenly felt. No bridging of any harm was made. No acceptance, no love... 

In the event,  some other survivors actually did meet the Pope? Carefully hand picked 'safe' victims, carefully 'stage-managed'.  They did not come from our very vocal MACSAS organisation, no...only the shy, powerless, 'nice' survivors who would 'keep the secret' of the meeting and say the right thing afterwards! Survivors who would not 'rock the boat'.

We, vocal survivors were viewed as 'unhealed', 'disturbed', 'unforgiving', 'unloving' (of the Church). I believe we were authentic Christians. Following Jesus who rid the temples of the money-changers. Jesus was all for Justice. Our call was a Jesus call. No less.

We would not give up, we decided to bring the Survivors book to Westminster Abbey, to stand at the railings and try to give it to Benedict as he passed. It was a slim chance! Well, no, it probably was a hopeless chance - but we tried.

Arriving at the barriers, I, in my wheelchair was abused and accosted by young (and not so young) rabid Catholic 'opus dei' types, dressed in 'I love the Pope' t-shirts, and black leather jackets, who, on finding out what I was trying to do, proceeded to physically cut me off from the front space I had found, by forcibly getting in front of me to block me from the barriers.

When I protested and was helped to stand on my wheelchair (unsuccessfully - rather dangerous, I have to say, but I was a messenger, I was certainly not giving up) I was threatened by a police man with arrest. I sat down!

These 'Catholics' screamed at me "the pope has apologised, what more do you want" . As if 'apology' would heal the pain, suffering. As if 'apology' would be all that was needed.

For us we wanted the 'Truth' to be exposed, files hidden - opened - priests hidden brought to 'Justice'. We wanted 'Accountability'. nothing less.

'Apology' is mere window dressing. meaningless without action, change and survivors honoured, believed, supported.  

These angry Catholic's entrenched, with almost cult-like devotion was scary to behold. The Pope was 'God'. They adored him.

I was to them, an anti-Christ, an evil to be shunted into obscurity. I confess that the brutality of their 'Catholicism' rendered me crying and terrified. I was 'rescued by a radio crew who had wanted to interview me and I gave my interview in tears.

I was truly shaken. I'd never experienced such violence from Christians. I could not understand it. Did not expect it.

An iconic photograph was taken of me holding 'The Book' up in the air , I decided to 'offer the book to God' symbolically. The Pope was never going to 'accept it'.

 

The man beside me (first pic) was terrifying! Leather clad 'stazi Catholics in front of me! Scary.

'

 

Then I gave the book a hug and 'told' the victims of clergy sexual abuse I honoured them if the Church did not!

I was shocked by the 'lack of love'. Shocked by the rejection of all those victims of clergy sexual abuse who'd contributed to the book. There was even a video inside, of a Deaf Man signing. He'd been sexually abused by the Catholic chaplain at his deaf school in Boston Spa.  

I was distraught I had failed to hand it over . I had failed to get their voices heard.

After the radio interview, a male survivor who had been handing out leaflets elsewhere came up to me and declared "Margaret, People spat at us, screamed at us, attacked us, told us to go away".

HE was visibly shaking too. A most gentle person, brutally abused by clergy in Australia, as a child - he didn't deserve this.

 

He is custodian now of the book. In his 70's, he is a very ill man. But he guards the book - with deep love. 

 

We left. We saw the Pope, we saw the adulation, the pomp, the celebrations. We had nothing to celebrate.

 

we had been attacked, vilified, spat upon, shoved away from the railings,  rejected by Our Church (yes we were Catholics) we were 'persona non gratia'

We were rejected. It was made clear to us that OUR VOICE was not welcome. we disturbed the Christian charade!

So what of Dublin, in the Phoenix Park? Will I be there? No.

Why should I be there? I left the Catholic Church years ago (but not God/Jesus - I'm a committed Christian - follower of Jesus),

I left over child sexual abuse by clergy, and over clergy who exploit sexually women - adults - who sought pastoral care, spiritual direction and help and were then molested. The Church called it an 'affair'. The women called it rape, abuse, exploitation.

 

Many were nuns. Cowed, bowed, bleeding in their habits of shame.

Abuse of adult women by clergy is not nearly uncovered, spoken about, acknowledged but it was my doctoral research topic.

65 women told me their experiences (I was in touch with 200) - what I heard was evil personified wearing the clerical collar. Protected by the Church.

 

My thesis was entitled: 'The Well from Which we drink is poisoned'.

 

I left the Church where we were not welcome. I left the Church as Bishop after Bishop was found to have 'covered up', allowed sex offender clergy new pastures, new ministries, where no-one would find out who they actually were. Left children and women at the mercy of sexual predators. They did not care about them. only their priests.

I left after I discovered Africa was the church's dumping ground for their sex offender priests. A racist decision, to destroy also the black children of God.

 

I left over the torture and misery created by both clergy sexual abuse and the Church's disgraceful responses.  

 

I cannot 'belong' to a church that betrays those they profess to love and support. This is NOT the 'Church of Jesus'.

I cannot be part of evil. I cannot be a hypocrite.

 

I love too much - survivors of clergy sexual abuse, both child victims and adult victims and God.

 

Whatever their nationality, whatever their colour, whatever their position. Those poor, male, female, British, Irish, African, Deaf , disabled, sick, all victims of this evil.  I care deeply for them.

 

I find this visit to Ireland by Pope Francis stirs up in me the deep horror I felt at the railings of Westminster, where I was attacked by allegedly 'devout Catholics'.

 

It is that cult-like devotion I fear. Where tacky coins, plates, mugs, ribbons, flags and 32million Euro will mark a Pope's visit but ignore victims destroyed by the collared ones.

 

Where state and church which Ignores the perilous position of Irish homelessness and dire health services and squander 31m euro on a 'party in the park',  A 'party' the Pope can well afford.

I am not going to be part of that again. Its not the Jesus I know.

I won't be there.
--

"your disease is progressive"

In my 40's I knew something was 'wrong' when I could not walk easily down the platform of King Cross Train Station in London. Wondering why my legs felt 'heavy', why putting one foot in front of the other felt like walking through treacle. I also felt exhausted most of the time.

Doctors were baffled. I started using a wheelchair in 2006. And doctors wondered why. "Why are you in THAT?" my UK neurologist once said. I told him; "I can't walk".  He hadn't seen me trying to get from the 30 bus in Holborn to the National Hospital for Neurology & Neurosurgery.

In 2009 I graduated PhD in a wheelchair!

I couldn't walk. and he was disbelieving and hurtful.

I was 'shaking', so Parkinson's was diagnosed (by two neurologists in London) but the weakness of walking was dismissed. My wheelchair seen as, probably, 'not needed'.

My walking 'truth' was ignored, was denied, was dismissed. Right up until and including 2017 when an Irish neurologist wrote to a new neurologist that he had seen no progression /deterioration of my disease in the 6 years he had me as his patient!

Interestingly others had!  My physiotherapist had to write twice to plead that I get help. He witnessed my stumbling, near falls, I had had some serious falls, my inability to negotiate my house.

He wrote to my GP who dismissed it as he had seen my neurologists referral letter and chose to believe the neurologist. The physiotherapist wrote to my new neurologist. I had to insist my GP write to my new neurologist also, on the threat of me going to a solicitor if he didn't and I fell and injured myself. He wrote.

Yet in the time the Irish neurologist was my consultant , two muscle biopsies (2012 & 2014 in London) had proven I had Muscle myopathy as well as Parkinsonism, dystonia and an energy disease (CPEX test).

His referral letter was the most devastating doctors letter I'd ever seen.
I was shocked, astounded, numb.

As I increasingly struggled to walk, my neurologist declared he'd seen 'no deterioration'. I, had tried to convey my 'deterioration' , in my last consultation I had said "everything is worse" - I was totally not heard. Which is finally when I realised I needed to leave him.

The pain of that denial of my reality rendered me a 'jelly' of depression, lacking confidence and disbelieving my own reality. I've had to battle emotionally, psychologically to hold on to my 'truth', my 'power', my 'knowledge'. I CANNOT WALK.

This neurologist  ignored UK consultant specialists
He ignored skilled assessments
He disbelieved my reports of continual difficulties.

He even ignored the OBJECTIVE muscle biopsy which in fact proved I had

 

 'Muscle Myopathy' a degeneration of muscles. a DISEASE of my muscles.
 

Seen under a microscope.

He made me feel as if I was going mad. Was making it up. Fabricating. Exaggerating  He was telling me I had blond hair, just as I was telling him I had brown hair!

That's 'madness making'. Its insane making.

And everyone BELIEVES neurologists.

No-one believes the patient.

and who else knows he also ignored the objective tests done in the UK?

No matter how many 'reports' you have, tests results you have, opinions you have, if the lead consultant (or GP)  has an 'idea'  (particularly here in Ireland where misogyny of male consultants is especially pernicious) his, and only his, 'idea' holds sway.  You as a woman, low on the scale of 'belief', are up a river without a canoe or a paddle!

I've laboured for over 20 years with a progressive neuro-muscular disease and my biggest enemy has been one male Irish neurologist in Dublin.  

He was a neurologist from hell.

And I will say that. I will say my 'truth'. why should I keep it a 'secret'?

The additional suffering this neurologist caused has been on the scale of torture. Abuse. Neglect and totally unprofessional.

He devastated 6 years of my life.

Proof!

A film taken from you tube - similar to my test yesterday- I had a lot more wires and 'things' stuck on my legs.

 

Yesterday my TRUTH was validated. Visually, professionally and alarmingly. Through a skilled 'gait analysis' physiotherapist, with a PhD, at the Gait Lab in Central Remedial Clinic (CRC), Clontarf.

I was examined, I was filmed walking. I was filmed walking with all sorts of wires and contraptions stuck to my legs, and wearing a jacket holding more wires and contraptions.

I've had a gait analysis once a year for the last three years. 2016, 2017, 2018. What did it prove? what has it proven?

"my disease is progressive".

 

"I've got worse"

 

"I am not mad" 

I was shown all three videos from 2016-2018. I was shocked, appalled to see my deterioration. It was patently evident.

As the wonderful Dr C said; "we've demonstrated what we needed to demonstrate" .

Yes, we have...and NO Neurologist can dispute it. NONE!

I am unable to walk...period! 

I am a wheelchair user and will be until I die.  

 

Having my wheelchair adjusted to account for my dystonic inverted left leg and foot

 

No-one should endure what I've endured in Ireland since I returned here in 2010. Its been an utter medical nightmare.

This is how HSE works

If you are sick, disabled, elderly and have no family or friends able to support you, you have the HSE - yes?   er...well no

The HSE is all you got and it has a well oiled machinery - fine tuned NOT to deliver but at the same time to appear to deliver.

So this is how it works.

They offer a few sessions of physiotherapy...which becomes sporadic, non-existant very quickly but in answer to TD's or Ministers they say "She has a full physiotherapy service - because you've seen a physio once or twice.

The physio knows all he has to do is offer a few sessions so he can say - a service was given' . So as I scream in agony from severe oseo-arthritis, muscle myopathy, snapped tendons, inflammation, spasm from my dystonia and disease process - I've allegedly got a physiotherapy service - well where is he?

you have one visit from the occupational therapist, perhaps two or three but then no more - nothing is achieved , thereafter he just doesn't answer phone calls or emails. he's never properly 'home assessed you', He disappears....the armchair he gave you is impossible to manage, your wheelchair needs adjustments, its killing you, not supporting you, he knows this, you're still waiting for a bath tap turner, nothing gets sorted, he 'disappears', yet managers still write to TD's and Ministers "She has an occupational therapist "  he knows all that's required of him is to appear to do something, even if it only means 'beginning', not actually complete his tasks!   So I have an OT - well tell me -where is he?

The nurse calls once in a blue moon, and I mean, once in a blue moon. but every time you need her, plead for a visit, she's never available. she's in an anti-natal clinic, pre-natal clinic, baby clinic, immunisation clinic, breast feeding clinic, school visits - she's not available to you if you are old. She admits she  doesn't know how to assess you for 'needs' as she doesn't know anything about your disease. So she assesses 'down', giving you minimum scores, because she doesn't know how to assess you.

She can't support you because she doesn't 'know anything about your disease', She fails to get your promised 'respite care', promised for months, or your falls alarm,  yet the HSE manager tells the TD's and Minister - 'She has the services of a nurse.  Do I?

The social work manager, is supposed to be my 'social worker'.  she never visits, returns calls or does anything much . oh yes, she did try to get my medical card back. but invariably all she does is - not much. You might get her on the telephone, and she'll say "how are things going" which she should know if she's your social worker but she's not. She's described by the HSE manager as part of my 'clinical team' but social workers are not 'clinical professionals.

 do they?

but then this manager described himself as part of my clinical team once only to back-track when I confronted him about this .

But the same manager repeatedly, nauseatingly, describes to TD's & Ministers that 'she has a social worker' - I don't. and as a former social worker myself if she's doing 'social work' I didn't train her!

So yippee, I have a full and active 'clinical care team - '

so why do I suffer so much? Suffer, not able to cope because I don't have...

• enough PA hours
• an armchair I cannot sit in without dire agony
• a tap-turner
• a wheelchair I cannot sit in without extreme pain
• respite
• physiotherapy (recommended by consultants)
• hydrotherapy   (Recommended by consultants)
• pain relief - help
• any life outside my house

if I have a full compliment of clinical care professionals how come a clinical psychologist  assesses me as suffering

• severe PTSD
• severe depression
• at the bottom 20% of the population in 'quality of life'
• not coping, confused and in disarray

due to HSE neglect - this she states in her clinical report.


What is further galling is that TDs & Ministers believe the HSE managers because its easier. They are almost without exception, not willing to fight the corner - over time - of an elderly, old, disabled, sick woman. I'm not a child of 5 in pig-tails and ribbons, with angelic face. I'm an old 'wrinkly'. not worth it, nearly dead. yes, I'm angry by my politicians ignoring the older person.

These TD's/Ministers absolutely KNOW the HSE is not delivering community care - they know it. But it lets THEM off the hook if they receive letters saying 'Margaret Kennedy (or Ann Kennedy - my twin) 'receive the full compliment of community professionals services'.

A senator, known for his 'disability work' didn't even read our reports we asked him to read. He said "send them to me' - we brought them by hand to the Dail, where we sat and had tea. He admitted months later he never read them - and laughed. It wasn't funny!

TDs write one letter on our behalf, receive HSE bullshit "They receive a full compliment of professional services"  and do no more. They never challenge the HSE , never unmask the lies. the 'economy of truth'. NEVER. They've fulfilled their obligation to ask the question - but do no more. They get paid for NOT rocking the HSE boat.

The HSE is 'untouchable', like the mafia, triads, KGB!

Simon Harris, our own constituency TD, ignores us. Stephen Donnelly, our other  constituency TD told me years ago he did not deal with 'individual cases'. I wheelchaired away from his Greystones office swearing never to vote him in again. Ditto Simon Harris. Finian McGrath - minister for disability  - took our reports, promised to read them - nada - NOTHING.

 

Minister for Health: Simon Harris

 

Stephen Donnelly TD  FF  Health

 

                             Finian McGrath - Minister for Disability

 



all political 'betrayers' of the older, ill, disabled women - Margaret & Ann Kennedy in Greystones, Co Wicklow.

So I'm fast approaching 66years old. my last 10 years have been hell on earth and I'm faced with a pernicious, evil, bullying, toxic, abusive tier of HSE managers from hell.

Not the ground level staff - they are pleasant enough...but they don't do what's on the label. they've been 'hypnotised' by their managers to do the tokenistic gesture but not give a service - its cheaper that way. and all of them want to keep their jobs. they don't work for us - they work for the HSE mangers mafia.

Rare Disease Patients are being let down in Ireland

Over 25 years ago myself and twin fell ill with a slowly progressive neuro-muscular degenerative disease. At First no doctor really 'cared' to hear our cries of "what's going on?". 

searching for answers - alone

 

We were women, and this counts in the rejection of patients voices. WOMEN are 'hysterical', 'make things up', exaggerate'.

Male doctors (largely) ignored our presenting disease as probably 'psychosomatic' or 'nothing serious', only mild when we knew our bodies were failing.

At 40+ we found walking difficult, became hugely fatigued,  we began to shake in our 50's, by 60 we were both using wheelchairs. with recognisable symptoms and diagnosis of Dystonia, Parkinsonism, muscle weakness and huge fatigue not yet understood.

Only by fighting, screaming, persisting did we get out of Ireland for more tests, yet this too 'went wrong'.

Delighted to go to a top UK specialist in a top UK neurological hospital in London, under the Irish E112 scheme where the Irish government pays for treatment abroad, we duly arrived for in-patient stay to find the 'top specialist' leaving the country for our whole in-patient stay!

He was not THERE! Tests were done. Things 'found' but he only came back, three weeks later, the day we departed home.

Nevertheless a muscle biopsy was done and defects found - muscle myopathy. Pale central cores (untypical) indicated a 'core myopathy' but no-one knew which one, or what myopathy and our Irish Neurologist didn't care to follow through further.

He didn't CARE.

5 years from these tests we still don't know what muscle myopathy we have - there are many. Some can be arrested, treated, slowed down, (not cured) and no-one wants to know - except us.

outside the Dail, Dublin, protesting health care - in crap HSE wheelchairs that created huge pain and problems.

We begged for more tests outside Ireland and we are again sent to UK via E112 this time to Newcastle.

Our Irish neurologist referred us for further 'neuro-muscular tests', the London specialists made a parallel referral for mitochondrial tests. We landed in a mitochondrial team for mito tests. Even though our Irish Consultant requested 'neuro-muscular' tests. We never got the 'neuro-muscular' tests.

We still don't know what muscle myopathy we have.

Neither our Irish Neurologist, nor the E112 scheme monitored what the UK specialists were doing and it was a disaster!  London & UK took the Irish Kennedy twins for mitochondrial research that did NOT benefit us.

Yes, we discovered we had 'multiple deletions on our MtDna. We know we show evidence of Mitochondrial dysfunction. We know we do not 'make energy' the way 'normal' people do. We use a different metabolic pathway to create energy, found out doing a complex CPEX test.

 Ann undergoes CPEX testing in Newcastle

Margaret undergoes CPEX testing in Newcastle

But we still have no idea why we show features of four distinct diseases: Parkinsonism, Dystonia, Muscle myopathy, Mitochondrial disease.

We still do not know what form of muscle myopathy we have. Even though a London, different neuro-muscular specialist we paid privately to see, said "not all tests, that could be done have been done".

The first London neurologist requested our Dublin Neurologist seek funding for him to do the WES testing : Whole Exome Sequencing. Highly sophisticated genetic tests. He did not.

He showed no interest whatsoever in advancing our diagnosis. Bar signing the E112 forms he did not keep a close watch on tests, tests results, nor did he communicate with the UK and keep himself, or us,  informed of progress. He was a neurologist from hell.

The Dublin Neurologist failed to follow through on the second London Neurologists recommendation (3 years ago) to be re-admitted to London for the tests not done. We gave him the letter she wrote. We begged. we pleaded for the 'tests not done'.

NO. He had long since decided there was no point. 'No Cure - no point'.

Newcastle doctors persuaded us to sign up to the 100,000 genome project and told us this was our best chance of getting a genetic answer to our disease. The problem here...we were NOT eligible for the 100,000 genome project, we were not UK citizens.

But for 3 years we were told 'wait for the genome results', 'wait for the genome results'. But they would NEVER come, we were never ENTERED into it.

This we only found out this week.

But they did get our blood. Our DNA. Twins are valuable in genetic research. Very Valuable.

Yet Newcastle & the Irish neurologist told us to 'wait for genetic tests results' and meanwhile - the Irish neurologist refused all discussion, further tests, further admissions, further investigation.

The Irish neurologist didn't even know we were 'not entered' because he didn't bother to keep in the communications loop with either London or Newcastle.

In late 2017 he was requesting copies of all letters from the Newcastle Consultants because none were on our files! 4 years after our trip to Newcastle.

By this time neither of us were his patients. But he knew we were registering a complaint concerning his medical care of us.

So where are we? What's our status as patients with Rare Diseases in Ireland?

We are pariahs, persona non - gratia ...because we demand investigation, demand answers, want a diagnosis. Because too, we have uncovered medical chaos in our Irish and UK care. Utter chaos.

We have found out the Irish Dublin Hospitals have devised, without our knowledge our 'care pathway'. 

They have met, to discuss us. They have jointly come up with a strategy of 'response to the Kennedy twins'.

How do we know this? A CEO of a top organisation spoke about us to someone in the hospitals group, he relayed back to us "are you aware the Irish Doctors have a different view of how to treat you"?

Yes, we've suspected this for a long time.  We've suspected the brick wall we come up against when we seek further diagnostic tests meant a covert, 'plan of action' agreed by the HSE and Doctors - collusively.

UK doctors were/are willing to further investigate, have requested this, have requested further funding. Know the tests they want to do on us.

Irish doctors refuse.
Refuse to pursue our diagnosis which is our right under the Irish 'Rare Disease Plan'.
It is a collusive plan to passively euthanasia us.

The HSE appear to have covert 'killing' plans.

Only this week HIQA raised the issue of how disabled people were treated in the Cherry Orchard HSE residential unit for disabled people:

 https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.rte.ie%2Fnews%2Fireland%2F2018%2F0704%2F976202-hiqa%2F&h=AT3najwd-fmgYB2vdro5DScuxH6d1ZEKUJCg3WPDrR30ld0SF4EcL6tPoOsh9WR1vXwt5qTVM21-q5sW4H_4wKuRnCFh428IRzOxGl0WV-ft3UzHSCnW6HV8Hv0cmbudlHDccMPV1fp_XbMSd8ebQaTycgVIBpI

This residential place falls within the HSE CHO6 area we live in. The same HSE group that collusively discuss us with the hospitals group without us present.

In Clonskeagh the HIQA reports:

Inspectors examined three residents' files, which instructed that none of them was to be resuscitated.

 

They found that the process that led to this decision was unclear as no documentary evidence was available in relation to discussions with family members, apart from the statement that they had taken place.

There was also no evidence that the wishes of the residents concerned were respected in the process, even though inspectors were assured that all three of them would be able to participate in such a discussion.

This is exactly the same for us. We have a DNR note on our HSE files. We feel it, we know it.

It probably says: DO NOTHING.  Offer nothing. Let them die. They are old (age 65) past their 'sell by date'. They are expensive.

Why do we 'know this'.

Under freedom of Information requests (FOI) we have been refused the HSE CHO6 managers files under a clause it would be too onerous a task for administrators. What do they not want us to see?

The CEO who told us the Irish Doctors view our care differently to UK doctors won't tell us who he was talking to, or what that 'plan' is. He has sealed his lips.


Does this not 'feel' like a HSE covert plan.

it does to us.

at 65 we do not 'count'. Our wishes are ignored.

We want further tests. We need a diagnosis. We will continue to fight. We want to go to Harvard - to the 'undiagnosed' research unit there. We will get there - somehow.

Kennedy twins lead Greystones, Co Wicklow protest about the cervical smear tests scandal

 

Ireland's Rare Disease Plan launched 2014 - on paper only!

 

Margaret Kennedy: I feel utterly betrayed by my country

Ann & Margaret Kennedy organise & lead a protest on Disability Human Rights

Kennedy twins hand their 'health is a human rights' petition - for health care to Mary Lou McDonald outside Leinster House.

 

 

People with Parkinson's do incredible things!

On facebook a video popped up. from Parkinson's UK it was dispelling myths. Some needed to be said , corrected, others were patronising ableist guff!

Myth: Parkinson's will ruin your life

...cue people with Parkinson's running marathon's, cycling, canoeing, pushing children on swings, boxing, doing Tai Chi...etc. With the comment

 "people with Parkinson's do incredible things".  

All great stuff...if you can do that.

As someone living with Parkinsonism, a form of Parkinson's , I cannot even walk let alone do any of that. Getting off my bed to go to the toilet is a mammoth task. walking out to garden to feed the fish in the pond I'm full of fear of falling.

I shuffle, I get 'stuck' in doorways, going around corners, turning around, going backwards. Getting milk out of the fridge, or opening my front door to a visitor demands skills Parkinson's prevents.

You have to open a door and step BACKWARDS to access the opening. it can mean leaving people standing at the open door whilst rooted to the floor 'frozen' as Parkinson's feet/mind don't do 'backwards'.

it can leave me swinging from the fridge door screaming 'now what?' with milk in hand, door in the other unable to move forwards, sideways or backwards!  All fascinating. All 'incredible'.

I cannot hang out the washing, water the garden, take the dog for a walk...
I won't be running marathons...or doing tai chi.

So What do I think of the UK video? 

The balance is all wrong.

Yes, people with Parkinson's do 'incredible' things, some trying to do the things they used to do. not 'incredible at all - merely what they always did.

inspo porn is an ableist patronising device of humiliation. Telling me I'm 'incredible' for doing the things I used to do , as if its perceived as  not possible so is 'incredible' is 'inspo porn'.

I gave a lecture last week. Some might say it was an 'incredible thing to do' given my circumstances...no doubt about it, it was hard graft, ...but no-one saw the blood, sweat & tears it took to put it together. To travel to venue, to speak, to stay around afterwards.

You see the 'incredible' but you don't WANT to see the suffering.

'Incredible' protects you.

'incredible' is a whitewash' for relatives, friends, non-disabled people, doctors, carers.

'Incredible' inoculates YOU from reality. its an attempt to inoculate me too.

'Incredible' for the HSE (Irelands health service - that won't support you) is a testament that you don't NEED any support. 'incredible' overcomes needs. and being 'incredible' means no services offered.

giving that 'incredible' lecture probably had the HSE gleefully exclaiming I'm not disabled, not suffering, not in need.

so, everyone does 'incredible' things...not just those with Parkinson's. living at all, in this world of injustices, inequality, hardship is 'incredible' , many people are incredible.

don't call me 'incredible', or rather...only do so if you really accept my reality, feel the pain, are willing to join in the journey, and not live off the 'inspo porn' that diverts you from the disease I have.

inspo porn is easy

walking (excuse the pun) in my SHOES < NOT THAT EASY!

Women in Ireland this day of all days

Today, 25.5.2018 Irish voters will put a cross beside YES or NO to allow women the agency and power to decide herself, over what happens to her body, her womb, her life. I know what I'm voting.

But I wonder do we closely look at 'power & control' in our lives and see who has power & control over us? 

We women need at ask that question. and we need to vote everyday to have our own power & control over our lives.

Here are some challenging questions.

Do I have full power & control in my own life as a woman?  Yes    No

Do I have full power & control in my own life as a disabled woman?
                                                                                                  Yes    No
Do I have full power & control in my own life as an older woman?
                                                                                                  Yes    No
Do I have full power & control in my own life as an ill woman?
                                                                                                  Yes    No
Do I have full power & control in my own life as an ethnic minority  woman?
                                                                                                  Yes    No
Do I have full power & control in my own life as a Lesbian, transgender woman?
                                                                                                  Yes    No

Do I allow others make decisions for me?                                Yes   No

Do I take responsibility to ensure my own power & control    Yes   No

Do I feel powerless to own my own power and control            Yes  No

Am I forced, coerced, made, to do what someone else directs  Yes  No

Has someone used violence to subdue your power and control Yes  No

Has any medical doctor reduced, coerced, forced you to relinquish your medical understanding, knowledge of your own disability or illness

                                                                                                       Yes  No

Has any HSE official taken away your power and control in how you want your life to be supported as a sick, disabled, older woman           Yes   No

Has any family member taken away your power and control simply because you are ill, disabled, elderly                                                           Yes   No

Do men take away my power and control                                    Yes   No

Do women take away my power and control                                Yes  No

Do churches/religions/organisations take away my power and control 

                                                                                                        Yes  No

I'm sure I could go on. Perhaps you can add more challenging questions. I am hoping women who read this are going to be able to say "I am a powerful, in control of my own life woman"

We, as women, need to own power and control,

we need to take back  power and control. 

however a warning. if in a violent relationship - seek advice and support - you cannot do it alone.

Some will not want you to have Power and Control and will seek to harm you. this includes, partners who are violent, HSE officials, doctors, family members others!

Reclaim yourself - if necessary with help and support.

 Its worth it.

 

 

Friendship & Death : Think About It

When a friend of 48 years dies, you think. You remember...you mourn deeply...

Rachel, my dear friend, like a sister - but infinitely more than 'sister' has 'left' me - gone, departed, never to be seen, spoken to, sit with, laugh with, talk with again.

Liz-Anne, Rachel, me & Stuart on my 37th Birthday

My first 'Adult' party - my only one too!

I wasn't a good 'socialiser'.

This was nerve-wracking for me

 

 



Her impact on my life spanned from age 18 - age 65. That's many years.

SHE saw me though my years of young adult chaos. quietly supporting, quietly encouraging, quietly 'doing' the things needing doing. No fuss, no bother, no anxiety - just instinctively 'there' for me.

My first adult years were, frankly, horrendous. Not to be remembered except for those wonderful people I met & my tenacity to overcome. Yes, I recognise & remember that.

SHE visited me in the hospitals I landed up in. Bringing support, clean clothes, news, friendship

SHE had me stay in her house, fed me, cooked bread, cakes, chatted & walked in Vicky Park, Hackney, London with me.

SHE introduced me to what Christianity really meant. A 'protestant' teaches a Catholic.

Rachel & Sue: Lake Windermere.

I was steering

We had such fun

 

 



SHE supported my CSSA & MACSAS work, took an interest, cut out articles from the Church Times that she thought I'd 'miss', as I don't get the Church Times

SHE came to my final 'graduation' , sitting with my twin, who flew in from Ireland., as I walked up to get my qualification as a GOS Nurse - albeit it the Green Uniform, instead of pink. She KNEW how I struggled to get to this point.

SHE helped me move into a new flat.

SHE cooked my 37th birthday cake as I had my FIRST Birthday party ever - and was very nervous.

 

Early days

Great Ormond Street Student Nurse

Then Staff Nurse

Then district nurse in Hackney where she rode a bike visiting patients

 



SHE cooked a cake for my PhD graduation. Then came and celebrated with me. On her dying days she opened her weak, weary eyes, looked at the Nurse as I sat beside her,  and said "she has a PhD" . Said in pride and love. She gifted me even to the end. And she was part of my 'support team'. I thanked her. I hoped she felt my love and gratitude. I hope she did...

SHE visited Ann & I three years ago in the neurological hospital in Queens Sq, London and again, washed the dirty clothes and kept us in clean clothes.

SHE got her son Tim to look after my puppy - Saffi when I needed help.

SHE showed me around St Paul's Cathedral where she volunteered as seamstress on vestments and altar cloths.

SHE showed me her work training to teach English as a second language to refugees who were learning English

SHE and I had a memorable holiday together in the Lake District. We rowed boats, pulled bulrushes in the rain, walked the fells.

SHE & I had wonderful , relaxing times around her kitchen table.

SHE - was wonderful.

SHE was a true FRIEND. She made no demands, she asked for nothing, she was gentle, kind , quiet and a very GOOD person.

 

My Dear Friend Rachel

I am so, so, in despair & grief.

Yet Rachel's death has me thinking...your life may end any day. DO what you want to do, need to do, should do...NOW

Waste no time

Be strategic, deliberate...plan how each 'wish' will be achieved and get it done.

I ask Rachel to be beside me, to give me the strength to continue on , to do what I really want to do. I'll do it for YOU Rachel. I'll do it for YOU , my friend.

Then I will join you Rachel.

One day.