Nijmegen laughed about shoes, but then ireland is a disaster for healthcare

Ireland of a thousand welcomes, well it is i guess!

its a beautiful country and at present is green enough.

but under the surface there is a grimness not many have a chance to articulate and many are too bogged down in dreary toil to even try to make sense of it, let alone start a blog page cos of your personal sense of outrage.

i am tired my friends.
i am tired of ireland.
the doctors....the HSE...and the crass way we do things here.

i have good reason.
but maybe pasting up detail found in the local newspapers these words do sum it up and give me reason to be afraid:

In his letter to Mr Tony O’Brien on 8 July 2015, seen by MI, Mr Quinn referred to a series of letters he sent to the HSE National Director of Social Care Mr Pat Healy over the previous year about concerns relating to the quality and safety of residential services for people with a disability in facilities run by the Executive.

Mr Quinn also highlighted concerns regarding the timeliness and effective implementation of the HSE’s national safeguarding policy published in December 2014.

“Despite assurances identified by Pat Healy at that time, I fundamentally believe that the risks identified and the circumstances within which residential care for a significant number of adults and children with a disability remains significantly compromised,” wrote Mr Quinn.

He stated that HIQA had taken the unprecedented step of seeking emergency cancellation of Our Lady’s Service provided by St Patrick’s (Kilkenny) Ltd and also had to issue further notices of proposals to refuse or cancel the registration of a range of services.

Mr Quinn pointed out that while a number of these services exist on a campus or congregated setting and have significant challenges in respect of their physical premises, the main issues of concern relate to “regressive models of service provision, negative culture and failure to recognise and protect vulnerable service users”.

He also stated that the notices then recently sent out had the potential to affect 318 adults and children with disabilities.

Mr Quinn also wrote to Department of Health Secretary General Mr Jim Breslin on 10 July 2015 regarding HIQA’s growing concerns about the continued lack of assurance that the HSE, as both the provider and funder of services, could provide in respect of quality and safety issues with the disability sector.

There have been a number of high-profile controversies recently involving the treatment of patients in care homes, including Áras Attracta in Swinford, Co Mayo, and Ard Dara in Cork.

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there is so much lying, deceit, abuse of power, injustice, inequality, lack of transparency, no wriggle room to find the justice you know you deserve.

all our services have been parred down out of existence, including the Human Rights commission, which seems to have found itself lost with lack of funding like everything, if you have a country in chaos, they say it gives rules the change to go mad, i mean 'psychopathic mad' in ruling.

if you get a person down far enough they wont wimper again.

well i will and intend to.

but it would be nice to think one day i will have my life back, this isnt living.

imagary are the order of the day i think,

first demo of my personal pain and grief.

then my gifts

then my wishes.

does that sound really good?

Addi lay in bed and just slept.  i could hardly move a muscle.  i had a bed companion at least! caption

it is.

after a very successful painting exhibition i seemed to have become very unwell, i had no temperature control and had long passed the menopause.  i was shattered all the time

its horrible to know you have been left in a small room with a dog alone.  told to keep taking the 'anti-depressants' but i knew i was very sick, i soon was to act.

here goes.

my pain was so bad....

i couldnt have done without my Ana

i didnt enjoy thinking much.  How can you go from a successful painter with studio to not being able to get out of bed?  and how can you be left?  well i am still thinking, the same thoughts

i was given a mobility scooter which revolutionised my life really, i was able to get out again.  but not after i had thought myself to walk because i had to do that too.  i had been to UK and found i had some problems with sjogrens, lupus and muscles and i was back.  here i am at the Hospice in the 'Rose Garden' on Respite, they give you lacatives here but no zip wires!

some brilliant health service OT persuaded me to move, but alas, she wasnt watching where the council put me...yep...i was shot at...and more...

I had to get away and i moved out of my county where i had lived all my life rarely leaving it.  but  now i was away from all i had known and met another brilliant health service OT who decided i had to give my mobility scooter back!
i kid you not!  so from Hospice Rose Gardens to Bang gone!

I hope Nijmegen experts alike will look at the shoes a person with considerable defects is supposed to wear, do you see holes in the soles, well yes they saw me through a snow filled winter and still - no shoes!  so we are now 2006-2015

 Yes i do consider i have gifts, so here i share....

my brushes snapped by twin when i was asleep

i was beginning to become quite accomplished at an art form i had not done since art college days, then whack i was 'outta it'

I received an Arts Council Award to do photography and i loved that too...rarely do much now as too busy trying to get healthcare.

'You understand, don't you?'
i called this image and entered it for an Irish Times Competition, i got runner up!  not bad!

you have to admit that they are worth photographing?

a really horrendous thing to see - my twin's dog coming up the garden with a knife!  i made a composite.  so i guess it sparked an image...with full meaning!
i do have wishes..a bucket list or wish list or aspirational thoughts.
to go home TO GO HOME AND TO GET THE HSE OUT OF MY HAIR.

KILLINEY BAY FROM THE GREEN LANE

LOOKING DOWN TOWARDS DUN LAOGHAIRE AND THE EAST COAST

THE GREEN LANE WITH MY ANA STANDING 'ARE YOU COMING?' SHE WONDERS

BULLOCK HARBOUR NOT CHANGED IN GENERATIONS, STILL SELLING CRABS FROM SMALL FISHERS

SANDYCOVE HARBOUR, VERY CLOSE TO WHERE ONE OF OUR FAMOUS WRITERS LIVED.

Never too late and never too sick, beats lying amongst the rose bushes in one respite centre to come here to this one in the UK
i want to do more of this ....and more...its called 'Living' which i think we should remind the HSE is the whole purpose of life really

YOU HAVE TO END WITH A SMILE - my great niece who is all grown up now well still teeny but not this teeny anymore!

HSE, NIJMEGEN, Elections, Abuse in CARE homes Ireland

I AM TIRED OF OPPRESSION IN MY COUNTRY
-YET-
I BELIEVE IN MYSELF
I BELIEVE I AM A WARRIOR
I BELIEVE AND KNOW I AM
A
'MITO WARRIOR'

I think I am in love - Nijmegen - where i met such beautiful people, so kind, insightful and caring.
PLEASE NOW MEET THE MIGHTY MITO WARRIORS!

RHODA SCOTT - NORTHERN IRELAND

KAREN AND TIM POLDERMAN - HOLLAND

MARGARET KENNEDY - IRELAND

ANN KENNEDY- IRELAND

Scandal upon scandal hits the media daily.
the HSE, its complexity, duplicity and its abusive powerful arrogence also is evident.

dismissal by the Minister for Health, himself now fighting a general election turns a blind eye up until the last minute.

MY ONCE WONDERFUL COUNTRY IS IN THE GUTTER, MYSELF FEELING VERY NEAR THE WATERY GRAVE THE IRISH HEALTHCARE SYSTEM SEEMS INTENT ON DIGGING FOR ME.

but turns a blind eye too, to a local government motion passed exactly this time last year where he was requested to look into the situation in Wicklow county and the dreadful HSE services in this county.
at first they claim they never heard about the motion being passed, then when it was sent in to them again they state and claim they cannot interfere, yet abuse is occurring in the community, one such horrendous case of Grace hitting media by the hour and day,

I know what Ireland has done to me as a sick and older person.  I know what is possible, now that I have met European Mito Warriors. All suffering but who have far better support all round - state, family and healthcare.

Abuse is occurring to sick people in MY community who cannot get help, even though we spend more per capita than any other country in europe and we are dropping down percentage wise in standards a point for ever year in the last seven years.

We have an election!
we are going to VOTE.
I shall exercise the citizens right to place my vote and vote accordingly to abuse, dismissal, neglect, further abuse and the hideousness of a healthcare system gone utterly wild with corruption at every level.
i will also say this internationally and have just done so.
it is pathetic to think that i state in front of an international group of top research specialists and doctors banal findings in a small country going nowhere fast.

its not often you have a young woman researcher make sure i get back to my seat in the auditorium and lift gently first one leg and then the other on to a chair in front so that my legs deal well with the pain, this is wonderful kindness from Serena above.  I shall never forget.

feeling i have not thanked the Meeters enough i came back in to make sure it was all done according to the way i feel about them, very grateful and very thankful.  Thank you Meeters!

i mention to the professors, to young Fellowship researchers placed in Bologna, France, Nijmegen, and the UK, i mention care for those who have rare diseases and sick in ireland.

when the young people do more then they need to - then you know maybe the world is going in the right direction - hopefully it will stay and last with them through all weathers

We have an election, but more so the truth is unstoppable.  because i will make sure at every opportunity i will state how it is in Ireland.

HOW DOES IT SEEM TO ALL AT THIS SYMPOSIUM AS A WOMAN FROM IRELAND RELATE THE BANAL DETAILS OF NEGLECT?

We say it as it is, which isn't speaking well of Irish Healthcare

its cruel.

its very cruel.
i mention about toe nails being ripped off.
i mention about a doctor, a physiotherapist and a podiatrist all refusing to measure a short leg.
can you imagine how this sounds to professors of clinical excellence>
it must sound pathetic and bizarre but this is Ireland and it is happening.

i mention about wheelchairs being provided that are thirteen years old and shoot into walls because wheels fly and see a fellow adult sufferer with mitochondrial disease sitting in a spaceship of a chair given by the very state and state model we were to instigate here, the dutch model.
alas, that has gone down the tubes, its been forgotten, abandoned, but everything gets abandoned here.

an attentive european symposium heard our voice

we get policies that are unsustainable instead, all under 6's get free healthcare.
what a boob boob, when the country is in the dire straits, and yet thats right even healthy kiddies are going to be over indulged because it looks good.
it doesnt look good that neglect and abuse if rife for really sick children and adults.

it never looks good to neglect our children and their beautiful care givers of parents.
in holland a very sick child can get hospice one weekend out of three, giving the family time and space to recoup to care again, but its respite, how hard is it for the irish mothers to struggle to get even nappies for their children and a wheelchair the right size for growing babies and children.

and what about adults?

IT IS A DISEASE THAT ROBS YOU, SO WHY SHOULD THE IRISH HEALTHCARE SYTEM ROB YOU OF EVEN LIVING A BASIC STANDARD IN DIFFICULT HEALTH CIRCUMSTANCES?

what of their care
it doesnt exist, as i have tried to work with the famous HSE to get the care i need.
barking and bitching about bath chairs, ill fitting cheap stupid shoes that are bought over the net and cause damage to my physical body.
careering into walls and sobbing when a wheelchair crashes and loses a wheel which has been fixed on by wrong bolts.

coming home from Nijmegen i got another missive from our famous HSE, its the same old story.
if the HSE was queried on why they amputated a good leg from the knee down they would stand up and say, to equalise it with the bad leg!
it is that bad.

they have an answer for everything and people in ireland are too darn laid back to do anything about this or kick ass about it.
but i am not.

COMPLEX

but i do know that Elja at Nijmegen says to me, 'do they not know that stress kills mito' i tell her, i say it to them, i say they are killing me and i feel it, my body tells me it and i am not sleeping any more.

I KNOW THE EFFECT OF MITOCHONDRIAL DISEASE, AS DOES MY TWIN AS SHE WAITS FOR ME TO SCOOTER BACK TO THE BED

WE HAVE A COMPLEX DISEASE AND A CARE PLAN FOR A COMPLEX DISEASE
today i received my meds of cannabinoid to ease my pain.
and still the HSE cannot see how distressed how ill i remain and am.
nor can my neurologist, who like everyone else has been muzzled by the HSE not to spend money on a 63 year old.

and this is what is happening when we try to get care package worked out and costed.
no one will do it, because the HSE is everywhere, involved everywhere and you will not do anything to upset the HSE.
we are not in ireland, we are in Mafia land, full square in mafia territory, no better than that.

NOW FOR THE FRIENDSHIP, SOLIDARITY, WORKING TO 'MAKE MITO VISIBLE - IN IRELAND' AND LIFE LONG CONNECTIONS THAT EVEN MY COUNTRY CANNOT ROB EITHER MARGARET OR MYSELF OR OTHERS WITH MITOCHONDRIAL DISEASES IN IRELAND TODAY OR THE FUTURE.  WE KNOW OUR FRIENDS.

WHERE THERE IS THE WILL - THERE IS A WAY! - - - 'I CAN DO IT!'

WE WILL DO IT!
'MAKE MITO VISIBLE!'

WE MADE IRELAND VERY VISIBLE!

THAT TINY INGENIOUS LITTLE VIDEO CAMERA CAPTURED OUR SHORT BUT POINTED WORDS ON HOW WE SEE IT - IN IRELAND - AND WHY WE CAME TO NIJMEGEN

LET US MOVE FORWARD - WE ARE AND WILL 'MAKE MITO VISIBLE' IN IRELAND WHEN ELJA BRINGS THE IMP 'INTERNATIONAL MITO PATIENTS' GROUP TO IRLAND AT THE END OF THE YEAR.....
...................................
COME ON EVERYONE!
GET THAT FINGER OUT OF THE PIE, WE HAVE WORK TO DO!

amazing hse policy documents

well, looking for my Crawford College of Art results which was akin to the cert my twin has just completely i pulled out reems of paper.
they were HSE policy documents.

these make fascinating reading, utterly fascinating.
talk about shooting themselves in the feet!!

Risk and incidents that can harm, will harm, does harm etc et al.

• safety Incident Management Policy comes under Dr. Philip Crowley's office!
• integrated Risk Management Pollicy 
• risk assessment tool and guidance (including guidance on application)
• vexatious complaints - dealing with policy- actually used against me but complaint upheld and i received an apology

Trust in Care - DFI  2005 I am unsure if this still is policy or has been replaced by another, highly possible as the HSE adore their policy making.

Mobility aids

• HSE policy on provision of powered mobility equiptment (PME) for adult

Referral & Waiting list management in care of older people

(i will refer back to this)

Referral & waiting list management for appliances

Waiting list management in COP physiotherapy services

I WOULD COME UNDER PRIORITY P2 FOR MANAGEMENT IN COP PHSYIOTHERAPY SERVICES YET GET NONE AT ALL and all should be screened for class work, eg gym based balance classes (giggle giggle)  group seated exercise classes regularly as time permits ie once/twice a month following individual assessment and screening (giggle giggle)

Upper limb classes with Senior Occupational therapists (giggle giggle)

• 5.3 Priority P1/Urgent waiting list clients should, where possible be seen within 1-3 working weeks of receipt of referral due to current staffing levels.  FASCINATING - HOW MANY FALLS FROM BADLY FITTING SHOES DO YOU NEED NOT TO BE URGENTLY SENT TO A SPECIAL SHOE AND GAIT ANALYSIS AND FOOT AND SHOE CLINIC AND NOT REPEATEDLY BACK TO AN ORDINARY PODIATRIST IN THE SMALL VILLAGE

as i do not come under PI i receive care as standard, which means none at all!

References :  National Health Strategy-Quality and Fairness 2001

                      European Core Standards of Physiotherapy Practise (2008)

                      European Physiotherapy Services Standards (2003)

I have the European core standards of Physiotherapy which is a reference for us in ireland

i also have - wait for it - Quality and Fairness - a Health System for YOU!

Primary Care - a New Direction.  these two documents came in with Bertie and also Michael martin as minister for health - er, was he ever minister for health?  god i forget!

anyway these are all tomes, and yes the first few bar the last two are in date, whatever happened the second two, i believe are still in operation as i received them from HSe.

so they must be or else, i am being lied to again by having them sending me the flotsam lying around their offices.

when we look at the physiotherapy time frames etc of the HSE, these are reviewed and signed off by all in this area, but also in my last area, because i know the managers.

if this is the case then all would have been able to get all the details to my malaise and circumstances through correspondence because they are so intrinsically inter-connected indeed the two areas of Dun Laoghaire Rathdown and Wicklow were and remain under the same primary care team leaders.

two separate individuals both men made contact with me today, both with grieviences with the HSE.

both suffering.

both inform me that the HSE lie, that they do not trust the HSE.

so its not only myself.

its endemic that the HSE is that big baddy all hate so much, yet why are they not trying to make it better.

well for instance, i am in constant contact with what i percieve and see as a 'good guy' in the office of Dr. Pat Crowley, but if he is in the same office in charge of quality and risk and therefore risk assessment as it states risk assessment is then why isnt he doing something about all i have spoken to him about, if the primary oversear to risk and quality is this office my complaints are not being therefore dealt with and i am in no better a situation and i am continually being harmed.

eg four pairs of shoes harmed me, therefore i am at risk from the HSE and still am!

i rest my case furious.

with the HSE and i am not the only one calling them liars at all!