Monday, August 22, 2016

The MEET project presents: Ann and Margaret Kennedy interview

we are so pleased to tell everyone the dye is cast....our collaborative conference between Irish Mito Groups and the Internatioal mito patients will now take place in Dublin Ireland on the 22nd March 2017.  we are excited.

we need voluteers, we need helpers to make this a great event to bring hope, encouragement and expertise to this small isle and allow something good to come of this for all suffering patient warriors, in ireland who have little support on many levels.



it will give a great start for understanding of a relatively new science, a new concept on many diseases under the umbrella of Mitochondrial disease.

this interview was done in Nijmegen where we met terrific researchers young vibrant and so kind and friendly.

we hope they will come in force.

well we mention november in the inteview but - SAVE THE DATE -  22ND MARCH 2017 DUBLIN IRELAND 'MITOCHONDRIAL DISEASE CONFERENCE - IRISH MITO GROUPS - IMP (INTERNATIONAL MITO PATIENTS.

Twin sisters Margaret and Ann Kennedy talk about their rare disease

we dearly want to have a life in ireland

a video done through the Irish Examiner about two years ago.
nothing has happened since - this is ireland, but nothing has happened and we receive no healthcare services in the community and little in the hospitals either.
please help us reclaim our lives from this awful situation.
we are fun loving but the trauma and stress is presently killing us.

http://www.irishexaminer.com/ireland/video-sisters-have-lot-to-give-despite-condition-336924.html

The Meehan family, tell us about MITO & Liams Lodge!

reality can be very tough and without a supportive country healthcare system it can leave devastating effects on families

Friday, August 19, 2016

such a very difficult time of it in ireland and healthcare

and life is life at all stages

i am sorry my friends and supporters that i have not posted up anything of late.
i have been suffering quite badly here in Ireland.
the situation now i consider quite grave and harrowing, and i now believe its all intentional abuse for i can view this in no other way at all.

when its constant rejection of needs being met then you have to consider it so.
we have had major care planning reports from top hospitals both in UK and also from an expert in Ireland and though the HSE had agreed all along to honor what the specialists have said thus far nothing has been implemented.

reports of care and and planning for our condition have been put down in formal clinical detail as far back as 2009 from a consultant in rehabilitative medicine in ireland.
the plan was excellent and the appraisal of my conditions precise and definite, the care plan also was expert precise and definate.
we then had another from Queens Square London neurology hospital from a very top professor, and this hospital has been awarded the acculade of being a centre of excellence for rare and complex diseases only one of three hospitals in the UK to receive this.
the care planning again was expertly appraised and sent to the clinicians and all caring for us at home.
again the second of three UK hospitals which gave a more detailed care plan was not adhered to.

this too was a plan the HSE said they would honour and to date they have not implemented anything from 2009.
they now take the stance of vindictive stubborness and are being incredibly abusive.
as we have not ratified the convention on the rights of those with disability, my life is being made hell on earth.
with a progressive neurodegenerative disorder, i am exhausted and in pain, i feel at the mercy of the state when so ill and when once i was so independent and dependent on no one.

the tool of blogging can be powerful, but it can be seen as a vindictive tool to get back on another.
this isnt meant to be vengeful.  it is meant to be truthful because of the level of fear i hold for my safety and care in the Ireland of the day.

i am declining too fast with no care at all at present in this state.
i am also perplexed that the Health care executive charged with caring for those who are sick in ireland are ignoring clinical excellence and leaving it up to admin managers to make judgements against all best practise and guidance.
it makes me wonder what this service is about.
it isnt about health and we can be clear on that.
but then the Centre for civil liberties have documented that those that fight for their needs to be met and go public can be victimised and be refused care.
we find this is exactly what is happening here.
i am not afraid to say it here for i have to do something to try and get the care i so badly need.
i have been now fighting ten years.

we as twins have made no headway whatsoever.
it continues to get seriously underfunded
a deepening worry is my health status and the level of neglect.
i can truthfully say, i am having a torrid time in Ireland and all through the lack of care provided and the struggle to attempt to put an 'end of life plan' in place for two very sick people. Ten years fighting is a very long time, a decade i could have had to enjoy life as others do and would do
an also deeper worry being that i cannot be the only one to be in this position, it isnt possible to be the only sick person in this mess and chaos and stress.

People do ready my blogs, but this is the very essence of despair going out today.
those who read this and if have any connection to professional practises in ireland or abroad i am now begging for an active response.
all responses can be addressed to:
Primary Care Services
HSE
Wicklow
Ireland
or to
Pat Healy
Dr. Steevens Hospital
Kilmainham
Dublin
Ireland
finally there are two others who would be interested to hear from you because they are seminal to forward the agenda for best practise in disability care and hope for all in ireland for best practise.
Finian McGrath TD
minister for disabilities,
Dail Eireann
Dublin
Ireland
Mr. Simon Harris TD
MInister for Health
Dail Eireann
Dublin
Ireland
we also have another avenue to explore to help us twins.
it is to the director of the oversight for Rare diseases for which a care plan and policy was launched in 2014
the persons name is
Professor Tracey
Department of metabolic medicine
Mater Hospital
dublin
ireland

we badly need the help and support of the international confraternity who have humanity at heart and care for those least able.

i guess too it is pertinent to state that a positive has occurred too.
I invited the International Mito Patients group to join with Mito families in Ireland for a one day conference in Dublin Ireland in March 2017
i am delighted to say the germ of the seed has been set and the date for the event has been decided and the venue.
it is with great pleasure to report that it is now an operational event and i am seeking as many volunteers to make it the seminar of the year for Mitochondrial disease kills more children than all the childhood cancers combined each year and many irish families struggle and grapple pretty much as we are as twins with mito disease and myopathy
so i end on a positive note and i feel true to the ethos of care.
i care and i care enough to put this together with the Help of IMP and Ms. Elja van de Veer all concious of the effort it takes to be Mito Warriors throughout the world when all countries are suffering in one form or another.

what has it come down to the eugenics that those with disabilities happen now to be less than all other citizens.
the contribution we make to society is immense and we can do so much more than be sick.
sick and disabled advance science.
give jobs
allow human beings hold on to what it is to be human, humane and kind.
without the sick the value of being human will never be known.
without love for all the value of human beings will be undermined and callous.

without having sickness no one can know the joy of wellness and without care the world would be a shoddy place to live altogether and increasingly it is becoming so.

to devalue one over another has to be wrong.
but this is the new way forward, putting money and prestigue over the good will and care we all once had for others.
money versus love and there is no contest.
we cannot live without a certain amount of money, but we sure cannot cope without love.
that is what makes humans trive.





Saturday, June 25, 2016

when HSE and state kills a good person - she will say how she feels

I awaken this morning with the same sickness within my soul.
I wake with bewilderment, thrying to make sense of the past ten years all the while knowing those ten years are gone and they are never going to be returned to me.
I wake also knowing that even before arriving here in Greystones, my awareness of progressive diseases meant that each new year would and did see me sicker than the year in passing.

But i have to look at this now in utter shock, suffering its effects to me and my twin sister and i actually cannot make sense of it at all.

When i came to Greystones, all knew within the HSE that i was escaping profound trauma already,  was escaping alcoholics, a bad housing placement, danger and anti-social behaviour.
What all, also knew was i had been in fact a very fragile and vulnerable person since the day i was born.
The fact that most of this history is on medical files and HSE files doesnt seem to have impacted on the personnel closely attached to the last area of residence as they come under the same managerial umbrella.

I left a county i never left in my entire life.  I left in trauma and against my wishes, i left when totally abandoned by the state both the healthcare services and the local authority housing services.
I effectively was abandoned at a time of great need by all.

The abandonment and extremes of abandonment are noted in Cllr. Pat Kavanagh’s missive to the Hse, that i had been very badly served and horrendously so in recent times by the HSE.

The effects on me is marked.
How can a state body, professing to care, be a health caring and safety upholding entity rubbish and vilify such a person as myself, with known brain damage, known vulnerability and sustain the attack for so long, unabetted irregardless of its reprecussions.
How can a state body for instance in this witch hunt, for that is what this was, manage to brandish me a person who is naieve, frail, elderly and sick as some kind of demon rather than turning around and having some sensitivity over the loss of my home, my home town and community and my brave efforts trying to start all over, when so ill with a neurodegenerative disease.
How can the state do this, knowing that what i was attempting was highly unexpected, unusual and i was doing so alone, alongside an equally sick twin sister.

What was the duty of care and when and how did it go out the window to be replaced with the strong arm of legalese to defend the indefensible.

How can a once fragile individual, shy, nervous but who loved people and tried to help all who were less able suddenly turn into some kind of horned devil?

How could the state perpetuate this myth and allow all its members to act upon this premise rather than reining in the groupthink and saying ‘stop’  which should have occurred a long time ago.

I had deserved as you had too to enjoy the time on earth that is so very precious, its never coming back once its over.
For the past ten years i have fought a mighty organisation, and the fight was unseemly, degrading and physically and psychologically damaging and injurous.

Did the state care that they were defaming a person of good character, trying to twist distress which i was in an obvious way very distressed into some kind of character defect?

Knowingly the state decided to abandon me.
They withheld care at every turn.  All care.
The HSE will fight this tooth and nail.  They claim that we have received the best of professional skilled care.

Can you cite where and when this occurred because i do not see it presently or in the past ten years.

Name calling and defamation is not a professional skilled approach to me or my care.
Bullying and harrassment prolonged and protracted is in fact against human rights and amounts to degrading and inhumane treatment and torture.

Bullying me to make changes to a property is inhumane treatment and against the law.
So too is bullying me into handing back a mobily scooter when no policy actually stated i ever had to, especially as i had maintained it out of my own money.

Bullying me and harrassing me to enter the mental health system against my will, is actually torture and against our fundamental rights, especially when all knew upholding the fact that i was of sound mind, didnt mean i had to be coerced at every turn to get back into the state system of mental health oversight.
This is bullyboy tactics and torture.

We had the withdrawal of services, and the denial of services.
We had the state take all my securities away which is both lack of forsight and also verging on an evilness second to none.
Because of the gross state interference i have lost so much.
Not only have i lost the quality of life i should have had once my twin returned from the UK, i lost her treasured company for happy times now.
What turned out to be a period of my life which i deem the most horrendous i have ever had to endure.
I saw the HSE as an agitator, an attacker on an individual which went uncensured from any source whatsoever.

Such attack was unwarranted.

The attack also emcapsulated punishment, for the punishment to me, for not capitulating to the heavy handed demands of a person i was never to meet who decided something about my property which i fought.
This actually was my right, but i have been severely punished.

I have yet to have any consisency of care if any care really.

I have been denied any type of meaningful physiotherapy, denied help in sorting a surface to sleep upon thus depriving me of sleep which is again a system they used in guantanemo.
I did no wrong!
In fact no one would have to have helped me to this level if they hadnt interferred in Dun laoghaire leaving me penniless.
That property that was small and inherited was to be my twin sister and my security against adversity, that has now gone, due to state interference.
What has happened now is that i am entirely reliant on the state whereas at one point i could have remained sufficient and self sufficent which meant i could be without such intense oversight by the Hse.

Virtually, my life would have been my own, not taken over lock stock and barrel by a seething HSE officialdom who now believe they have personal rights over my psyche, my life, my quality of life and are determined to twart my happiness at every turn.
But leaving me alone in the first instance, would have meant that the hse would have saved themselves thousands upon thousands in monetary terms and would have left me, as an individual intact in self esteem, financially secure and able to manage for the future.

What happened now has been detrimental to both parties.
But one was longing for all this to end.
All i had wanted was care.
All i had receive was anihilation at every turn.

Leaving two sisters profoundly traumatised.
But does it leave the Hse in such a state.  No.

The state you see, upholds its own.
So they can attack during the day and turn into a sweet little family man or woman having barbeques in the garden with extended family or going sailing, swimming or lanquish on a beach without a care iin the world.
What you have left behind is two women in tatters, in shreds and then of course you get into your car and return to your office to resume pretty much, more of the same.
Attack unabated.

I am up to my ears still in copious files, all of which show page after page of unbelievable prejudices, dafamation, cruelity and data breaches and slander.
Its a pile of staggaring documentation of what a huge organisation is very capable of.

But remember come five o’clock you return to the normalised world of the average.
You return to your own family and would never dream of cooking up such shit to them, ever.
But its ok to do it with the backing of a full legal team and in some instances i believe you enjoyed it.
Watching margaret and i suffer must have felt like just rewards to some kind of vindication of your action.

To me its gross.
To me its humanity at its very worst, and also state sanctioned.
Although the HSE seems to be able to hide behind a shroud of legalise, they cannot hide behind the constitution, the fundamental rights which we have signed up to and the policies of the state directives to offer care and healthcare to its people.

One thing you will never be able to run from is from women who say it as it is.
What you have done to my twin sister and myself is an evil.
I do not mince my words.
What has happened here has been a grave injustice because margaret and i are peaceable people.  Kind people and many have said this and documented this.

We had wanted to be at peace, we wanted to enjoy the end of our days, we never envisaged such sustained attack from a state body and we never envisaged day after day for almost ten years attempting to get best practise and attemping to right a wrong, a grave wrong.

Some day the HSE has to say to itself.  We didnt behave well in all of this.
The day you manage to say this, then healing will occur.
Certianly waking this morning i woke knowing we are at midsummer, and in the very same position as we were in ten years ago.
In a personal hell and agony.
This can be rectified, but will you begin the process please.