and life is life at all stages
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|
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
Dr. Steevens Hospital
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,
Mr. Simon Harris TD
MInister for Health
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
Department of metabolic medicine
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.
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.