Monday, December 28, 2015

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...

In this blighted house: 'Your allocated 'role' as a Disabled/ill person in...: I have a progressive, rare neuro-muscular disease . I can walk with great difficulty but largely need a wheelchair. I find breathing, walk...

a blog written by my twin sister, and so good i am sharing here.

Saturday, December 26, 2015

the night terror continues but what will new year bring

in reality for most, days run after each other and all the thoughts and the pain continue, i do not think anyone is able to switch that lightbulb in the head.
the lightbulb goes out permanently when there is death or an end to a crisis, a situation or a trauma.

for me the lightbulb remains, but mostly comes to hit at night and in the silent hours of the day.
its there for a few reasons but mainly for one alone, which hits the neurons like none other.

the HSE.
it has caused me such agonising grief and pain like none other.
with a kindly, very kindly conversation with a member of the HSE who rang to wish me well over christmas, he stated that others see the situation differently to myself.
Of course they do!
they ARE the HSE and they are that for nothing.

they know why they see the situation differently, becuase the warped thinking within such a mafiosi organisation says that there is one thing only for them, as opposed to the sick, is, their organisation's integrity must be held intact against even the fleas that hop.

but the strange thing about all this is
1.  the healthcare services was formed to help the sick and vulnerable.
2.  every person in Ireland can see through the 'group think' of the HSE, and really understands what the HSe really is all about, and this i am sure the HSE know, unless of course they are really not listening at all to anyone.  Everyone is aware what the HSE is about - protecting themselves like no other organisation in the state.

We also know health care is not about health but budget.

the reason its about budget is because the HSE and those who were bought in about two years to put management onto a more professional standing still cannot get the HSE to budget well.  At all.

for instance.
problem solving.

problems are solved when they are faced square on.
it saves time to do this.
it saves everyone grief from all angles.
it saves time during the processes of letter writing, phone calls, emails, stamps, office time and group discussions.
it doesnt make economic sense to be answering letters and emails for over five years and do nothing at all.
it absolutely doesnt make sense to be answering the government of the day or representatives, almost on a daily basis about the pain of another and making excuses for why it is occurring.
to bash and bully sick people, is perverse.

it literally is very perverse.
the reason why the HSE was formed was to help the sick and the vulnerable.

why do i not sleep anymore - i feel tortured.
why - HSE are doing this to me.
why is there no let up, simply because the HSE have not done a damn thing to sort a mess of their creation.
alas, they have a situation where they join up arm in arm like the rugby line up during the National anthem, the gig a bit, they shuffle but all along the way they link like a chain in the dynamic all known to well in group participatory sports of a high calibre.
they have 'group think' down to a fine art, and the responses.

when this kindly gentleman rings me and says he is sorry he has been unable to move things on a bit faster for us, i thank him but know to batter against the same individuals, is like flogging a dead horse.

and we have more waste of money.

but what will the new year bring for me.
i am unsure.
when the district nurse txts me and says 'i hope 2016 will be a happier one.'
she knows how terrible i feel.

she also knows where i stand in the pecking order of family and the level of isolation i feel within this area and within the family and county.

i feel very much like as if i am on robin island.
i am very alone.

christmas has been and it is obvious where i stand.
again as twins receiving one slim book from one relative to share with twin sister by way of my christmas present which is also a book that is self published is mean and unfair as we are two different adults.
we cannot get them to think that twinship is not a blood, body bind, it is individuals who were born like this by mistake and chose their own path and ways and are in fact very different.
needing yes, the same love because we are also compared as in 'virtue compared'  which is sick and perverse too.
but then to have people not care enough to buy a present for us as individuals, and to clump two relatives together to get one item for a twin is unfair.

it shows, where love stands i am afraid.
Love is shown by deciding to show it.
to decide to save money by lumping together two individuals into one for expediency is wrong and we see this as lack of love for the individual.
and mean.
they have at least as much to give as two pensioners with high overhead expenses on a very fixed budget and which will never rise at all.

so will 2016  see a change.
someone on facebook put up a saying, you cannot change another but you can change yourself.

i intend to.
for too long i have been bashed and my confidence shattered, intensionally by state and family.
the only way up out of this is by me, bringing myself in to a place i know i have been before.
i have been happy, cofident and proud of what i have done in adversity.

to revel in this pride can only be achieved by piling on achievement after achievement.
this i intend to do.

of the HSE well i will never give up my stance, that there, i hold myself not to blame in any shape or form to what has happened here.
too many confirm for me that this is the case, and i have known from others too who struggle in the same fashion as i do and who are being punished in very much the same way.

regarding family, well they were always like this and that will never change.
Love is for someone else to offer another.
if it has never been there it can not be given so what do you do.
you do alot of loving, if that isnt good enough the love not returned, then i am afraid the colours going out are rainbow and the colours coming back in return are shades of grey.

but then that is showing their true colours.

my wish for myself is to bump up the confidence i have lost over the years.
put my life back on track but never let it be forgotten what has happened me ever and this i plan to continue to do, i will never let it be forgotten on the platform of policy the HSE is a dying breed and they like love can change this, but i will see what the new year brings, they have this choice.

even if they loathe me, to deny care is evil.  positively evil.

Sunday, December 13, 2015

the abuse-neglect behind the stats for those living with a disability in Ireland todayfo

The article in today’s Irish Times by Dr. Clonan sent people into their own personal painful stories of experiences.

I honestly didnt think it was as bad as it is, and yet it appears that it is so.

Many now indicate that the situation is dire, appealing to members of the Dail from all corners of Ireland for their childrens’ needs fall on deaf ears.

It does seem it is but the tip of the iceberg, raging waters of poverty of equipment and services and appliances for all four counties screams from the pages of disability groups and especially the mothers and fathers who are asked to cope against all the odds.

In disbelief of one persons story i asked another who had multiple disabled children, ‘can it really be this bad?’
Confirmation came through her own story.

So the economy is on the rise, the country is seemingly getting back on its feet, people are baying for the extra pennies that were lopped off wages within both public sector and private sector and yet not one disablity group seems to have crawled from the mire of austerity in any shape or form and it doesnt look, indeed as if disabled children ad adults,  life style chances of enhancement is coming soon, if ever.

In one family alone an older child’s powered wheelchair has cost a single mother over 3,000k and the second child coming after is squeezed into an already far too small chair as it is.

Both children have life limiting conditions.
The house is set out like a mini hospital and there is constant lock-down in health crisis, one after the other.

Splints, shoes, tubing, dressings, medicines etc all have to be juggled  alongside the the far larger bills for the wheelchairs and orthotics and shoes and apparatus baying for the limited funds within that household.

Hospital runs, appointments and emergencies are all occurring, sleepless nights, baby sitters to cover staying with one while the mother is in the hospital with the other.

In another case four children are disabled.
Again the same seems to be the case, a 4,500k wheelchair for a child is needed.  Mothers are going to companies who make up from bits and pieces of chairs a half decent one for the child or go to a second hand internet forum to find something similar and do payments in small chunks.

The days seem endless, mothers online for this and that.  The exhaustion much be profound.
The HSE promising to pay back when parents get a chair but this never happens of course.
The despair is reeking through these stories, but who really cares?
Fund raisers and fund raising are the order of the day but many families find ‘what another fund raiser, what for NOW?’ people are asking.
Its endless.

The fund raisers are driving the cash strapped public weary and bleary and the good samaritan is exhausted with the clang from the clash of coins in the next begging needy disabled family or group or for the family group.

Where can all this end?

Adults too find it very tough indeed.
Over 60% of those getting wheelchairs from the HSE services are dissatisfied with the ones they have received, and are seen and felt not fit for the disability they personally have.  (Dr. Gowran)

The idea that the wheelchair is more a luxury than a prosthesis is par for the course.

Even to the eyes of those working within the HSE, if a person stands up, all eyes are agog ‘i thought he/she was disabled’  but most know that there are so many variables that most using wheelchairs are actually able to use their legs, but with such limitations to make it impossible or too painful or tiring.

Not only do we have those with disabilities living below the poverty line we have parents trying to fund the care and needs of growing children and dependent adults also living in poverty as well.

When the Hse runs a second hand ‘outfit’ for second hand wheelchairs, its a disaster.
Wheels fly off and a sick person goes into a wall.  (this commentator’s).
Wheelchairs slither into the muck on the side of a slight gradient, and the user told ‘ah sure they were never made for wet paving. (this commentator’s), yet this time the commentator was told it was because the bar at the back had not locked into place, but as it happened again, i looked at it and sure enough it was in correct position.  Systems failure in other words, or dodgy indoor powered wheelchair never meant for paths going south as in gradient.

Fact being, wheelchairs now-a-days are slithering and slithering off course into a divet to the side could have been fatal.

I heard of one case of a person going into a river in a wheelchair.

So how on earth can we be very chuffed to be pulling away from austerity and getting back into the black.
Who is?
Where is it reflected that Ireland is in recovery?
Is it?

I do not see it.
The mothers and fathers of disabled children do not see it.
And adults with disabilities are still not getting well paid jobs, if jobs at all and the poverty of disease, weighs heavily on top of the poverty of services.

We are in crisis – the disability movements are in crisis and so too are those with disabilities.  We need to see major changes and shifts of emphasis.
Most people caring for sick and disabled children, if given a break and some leaway can offer more in spades.
Most adults with a disability as well, given the chances, the transport etc offer just as good a career path as abled bodied persons, but employers it seems, think maybe they are more of a liability.
Tosh i say.

The only liability is lack of change, empowerment, rights and equality.
I am enraged to hear the stories that i have placed here in this article from only three families i already know about.

The tip of the iceberg

Wednesday, December 2, 2015

thank you! hit the 20,000+ mark and another link to another blog

hello everyone.
just to send out a heartfelt 'thank you' for reading my blogs, in the short space of time i have been doing this, i have reached over 20,000 and i am so happy about that.

now here is another fantastic read and its that of my identical twin sister.
you will see a theme running through both, and i think together the team is strong.

we will never give up and will fight the injustice throughout society for those of us now labelled and having to live with disability.

here is her link well i hope it is, tell me you get it ok.
bye for the moment, the dogs are needing their dinner!

Thursday, November 26, 2015

the disability trail to nowhere fast NDA at Croke Park

due to ill health i was unable to attend the NDA invitation to open discussion on part two of the statedgy for implimenting a disability whatever.

this is disappointing, but reports have filtered back which states that it was pretty much more of the same and being spoken to or down to in the grand old style that is typical of government funded organisations.
this sort of rhetoric of huddling together all the disabled interested groups and organisations and asking their experienced views has been done over and over and over again, for the past twenty years....nb lunacy act 1800 and something still on the books of good old Eire.

we have been asked to write, draft and submit  ad nauseum to the horrible drafting of a disability agreement part TWO no less, that is a 'strategy plan TWO no less'

which basically means its a draft.
just like the one that has hit the dust before this round, and the one the bite the dust before that again.

we are absolutely brilliant at this.
we hand out cakes with one hand at these events and speeches and 'how great thou art' and all that, but nothing ever becomes of this.

nb the lack of ratifying the Human Rights Convention on the rights of people in Ireland with disabilities.
the lack of this shot down a case in court today where an autistic man was hauled off to the police station in cuffs, yep, but because we have no human rights and it doesnt apply in irish law the father who took the case i believe lost this case.

its so idiotic that to be part of something and our gov says its proud of being a part of europe, a part of the EU, the UN and all we still won't agree the Human rights convention for those with disabilities!

so we have no rights.

thats part one of the blog over, and it doesnt get much better.

how it acts out for those who are sick and disabled too.
we are not doing too well.
i am not doing too well.

news filtered out to me over the past many days that there was a suicide within the hse and of course you wont find that in the media.
but it occurred.
i want to know why it did, because if its anything like the brink ship that happens when you are in profound distress as a sickie in holy ireland i can well understand why.

the HSE is a detestable organisation.
raftered up and shored up by a massive legal department, it is need of abandonment and got rid of, grand style and start all over again style.
no one in ireland has the wit to know how to do this, how to put something else in place and how to deal with the dregs that remain.

what we do in essence we sack the vile and keep the good and there are some good but there are pretty vile people there i have to say, they usually are the gate keepers of the cash.

they have no soul, no mercy and no empathy and yet all are qualified in some healthcare field, we are not speaking of accountants or financiers, we are speaking of managers with a primary skill in a healthcare capacity given the remit to manage the finance, something they cannot do well because its not their primary function.
the function of healthcare officials is to be helpful to the sick.
the money minders should not be managers of departments, i am sorry to say they shouldnt.

we do not 'do' management well, but mostly most know already that the HSE have this down to a grand and accomplished scale of zero out of ten.
they just dont seem to be able to manage it.

things like top ups have to stay because someone didnt think of a way out before it was agreed to offer top ups.
junkets on some ridiculous overseas rub shoulders affairs are rampant, most i believe go undetected.
we also have of course, inability to sack a civil servant so if you are shite at your job you cannot be sacked.
but we need to be able to sack em, just about everyone else is if they are lousy at their work.

rules such as these:
they only have mattresses in the HSE which they can give out to sick in the community which are water proof and bedsore preventers.
they do not have the sophisticated skill to tell a person or advise a person how to sleep better when the mattress is causing deep pressure and pain from an entirely different cause than old age, incontency and inability to move.

therefore in a myriad of conditions for people who need to sleep well only bed sores are cathered for.
thats irish.

another daft as a brush rule being if you do not have a diagnosis you do not get care
but then what about the many rare diseases people have who are struggling with the unknown although everyone knows a person is significantly disabled it can bar you from care without the defined diagnoses of a limited known few, and believe me there is a limited known few when many are sick and on death's door sick from an ill defined illness and disease which is genetic in base but yet the defect may not be found soon enough or ever will at all.

that leaves you out in the cold.
heres another, what about having a rare disease that is considered now eradicated therefore it doesnt exist at all, but when was it eradicated, before or after you got it.
well after in my case so i still have the rare disease.

you cannot dumb down everything to a common denominator and then leave the rest off the  radar for attention.
'have you got that in writing my neurologist asks' when he wants to know if my rare disease has been defined as i was told it was from the expert unit.
patients of course are liars, they couldnt tell the truth for love nor money.
we are pathological liars, so if we do not have a name it doesn't exist.
ostrich ireland land of the upturned arses.

Thursday, November 19, 2015

HSE medical treatment and personal history made pathological

i have nothing to hide, nothing to be ashamed of and know i have a chequered history.

it is when this history becomes pathologised then i will speak out.
when i say that all should be aware of something before it ever happens because sure as eggs is eggs when it happens its very difficult to deal with.

I was born with severe deafness and was very shy young lady on leaving school.  i didnt do well when i left a sheltered environment and its because of my profound deafness that both my skills as a diplomatic communicator was nil, but also my social communication was so poor i was left out of everything.
i became depressed about it all.
we were in the 70's then, not a particularly enlightened era (but then what i am experiencing now tells me this era isnt either!)  i entered the psychiatric system as there wasnt any such thing as psychology then, psychiatry was the only discipline open to us who were finding life tough to adjust to.
decades of medications and not a lot of living i left that and went for therapy, i was  fifty.

fast forward again i became very ill and pretty much no one knew what was happening and i was a bit of a mystery.
i was told to take the anti-depressants and with that left at home with not a lot else being provided.
i did receive an apology from the psychiatric services, they tell me i should never have been there.
i asked why was i and if they realized nothing much was changing for me why didnt they change their heavy regime of  over medicating.
they had no answer to that.
with the apology i asked the director of care did she not think it was a bit late, i now was unable to walk much and was on sticks and i then graduated to wheelchairs and more besides.

but i did get far with therapy and began to feel far happier.
nothing prepared me then when i became so physically unwell.

it is ongoing.
there is inuendo as to my past history.
doctors with a specialty of neurology and rheumatology regularly state stuff about suggesting i attend psychiatrists and i do refuse these suggestions and have a right to.  this is seen both negative but to suggest it in the first place is out of order for i am not mentally ill and never was.
the rheumatologist puts down my breathing issues as possibly my underlying anxiety disorder but i never was diagnosed with this either, either when young or now and i see no one now who have the skills to determine this so how on earth are these statements ending up on my medical notes?

they should nt be.
but my history dictates that all within the medical field can say it with conviction when they know once i was and maybe now i need it as i had once before, but i can say i was offered an apology.

no, of course that too isn't believed.

what makes it even more alarming i seem to have some condition that doesn't make sense and no one seems to be able to determine why i am so ill.
now i have already been told i may never know.
but i do want to.
because unless i know the innuendo will remain that this is some kind of fabrication.

when you get notes under foi which you are legally entitled to do, you could weep so you could.
the jury has been signed in, the executioner is whatever medical discipline i have been to and sentence passed without any proof nor without any expert opinions being sought.

the sentence is read out by the least qualified of the courts, the head of the jury but the judge of course has already directed the jury.

i remain pathologized.
and unless i can find vindication from somewhere i don't think i can live in an archaic system where such things are allowed that mistruths, suspicions around sanity, reality and pathology are blurred.

to me there is one way of dealing with a symptom and there is only one way of dealing with it.
you tell a person who is best to advise what it may be.
you ask for help and you are so friggin naieve that these 'experts' will believe you that you trust them to find out why you are having the issues you are having.

but when the doctors fail to care for you, fail to advocate for care and fail to write letters on your behalf and conducting tests to rule out certain things then we know we are in for a terrifying end of life scenario, this is little ireland.
the doctors are mini gods, you simply cannot question them and most don't.

but that doesn't also make it right for them to imply that anything i should say is either psychiatric or anxiety disorder,  neither of which i have and never did.

i was a shy young immature lady in my twenties, extremely deafened and already been sexually abused so i was frightened of entering adult life, again these do not make one mental, nor anything near it.
talk about counting five plus five make five hundred?

but this is ireland.
it could very well be every other country because those who enter psychiatry can never get away from their history.
try being a self injurer as i was then.
well that is instant loopers status, even though i am now in my 60's it still means i am permanently loopers because i show permanent scars.
what say anyone that i got out of that behaviour and took charge?
what if this is what happened, and it did happen, can you ask others to believe you or even by demonstrating responsibility for ones own life can you prove it you have taken charge.
not at all.
you will and always will be the looper.

this is pathologizing an individual to death.
and that worries me because i see i could die from this.
i could be ignored and could die.

it does and can happen and i am an extremely worried woman.
i have that right to be.
i believe i have every cause to be.

Sunday, November 8, 2015

HSE and Consent

i want to make a few things very clear.
this is so that others know and understand their legal rights.

YOU DO have rights in Ireland, they are there and lets not be blinded by the facts that are placed out there  in the lives of many a sick person here in ireland.

I am going to concentrate on the ones that failed me and for which i suffered very badly and because of this i want to warn others of various ways of finding out your rights.

Ok, so you or your loved one is sick or disabled or elderly and wish to apply for an adaptation grant to your home.
up until recently this grant applied for all with a disability, not just to certain brackets as those who use a wheelchair.
these included those with sensory issues, learning disabled, asperger syndrome and mental illness, they also covered problems within the living spaces that are not confined to the bath areas, they include adaptations to the whole home, whether it be the bathroom, the space, the lack of space and the various type of illness disabilities you are applying under.

If you are sick and disabled you do need advice, but be sure you know its advice you need and remember NO state body can ever tell you what you have to do to your home in order to avail of this grant aid.
there may be stipulations, but the ROLE of the Occupational therapist, and you are advised to get one on board, is just that ADVISORY, its not compulsory, there is no compulsory order for you to biff out your home according to his/her plans (HSE OT) and especially without your consent.

they have no rights in law to decide what you have to do with your home and there is no law to disallow  you be present during discussion regarding your own home.
this is actually totally illegal.
they CANNOT ban you from being present at any meeting that takes place when your home is being discussed, this is illegal.
(it is also illegal if they attempt to keep you out of decision making regarding a relative, a sibling or about care or otherwise, you are the important person when it concerns you and your own family, you are not allowed be usurped by the HSE for any reason whatsoever, at all times you have legal rights to be present at meetings and your consent is enshrined in law.
they cannot ban you from the health centre for any reason whatsoever, this is a public place.

they cannot send in any plans regarding your home, any reports regarding your home without your prior approval, your input and without due regard to both your wishes and your disabilities, in total your wishes and disabilities, not concentrate on one.

Remember at all times you DO NOT have to get the public OT on board even to do the advising, you can get a private OT, and there is a short supply of public OT's so a private one is just as acceptable, at least then, the state will not collude against your wishes.
remember, its happened to me and it is illegal.
Fact 2 regarding dealing with the HSE

try and get a second person on board to help you at all times when negotiating around health and health care, there are many good organisations out there and many good people usually alongside a second relative its good to have these people on board, but remember most are being paid by the HSE so trod with extreme caution.
we have both the Centre for Independent Living, Inclusion Ireland and the Disability advocates within the national advocacy service.

also refer at all times to the Citizens Advice Bureau and if in doubt make an appointment to see a solicitor there at the CAB offices in your area or contact Free Legal Aid.

Keep every single piece of correspondence you make with the HSe.
Date all documents you write and keep a copy filed accordingly.
Register every single letter you send and if you speak with an official follow it up with a letter regarding content of this vocal dialogue.

Never meet a HSE official on your own, ever.

Insist repeatedly on getting copies of your file notes under FOI you have this right and you have the right to have this sent to you by a certain time frame and if you have not you are legally entitled to know why and make complaint about this and seek legal advice.

remember too, know the limits placed on you where you can complain to because consistently the complaints processes are not adhered to, half undone if done at all and there is also a legal time frame you can take a case of injury against the HSE.
that is not to say all issues you have can be dealt with as you wish they could but other avenues remain open, you can contact media, make vocal and video recordings of your experiences after the fact, you can place on video your feelings about the wounds and the hurt and the injustice as they are being played out, remember to to 'voiceover' time, date and when and where they occurred.
one day your voice will get heard, those who persist will be heard.

as i write this i am very aware that i put my URL on the bottom of every single email i send including to the HSE.
they come in here i have no doubt.
they know me and they know that i will never let up until justice is seen to be done.

do not get despondent, do not believe just because we have not sanctioned the Human rights convention for the rights of those with disabilities that in law you have no rights, you do.
you have them under the Constitution of the land, look this up in every case of mishandling of your affairs.
you have the 'fundamental rights' which Ireland is a signatory and within the EU you have also rights because we signed up to the EU charter and many laws there, apply to us too, we have rights.

The human rights commission is considerably watered down under the present government and in my mind are in complete and utter disarray.
the Ombudsman's office ditto, its been weakened and there is less cohesion there too i feel.
The equality tribunal is not equal, unless you have pots of money to fund a solicitor you have little right to equality in law here because the hse will descend on you with a ton of bricks and can legally run all  over you in the space of a minute because they have a very weighty legal department and its the largest employer in ireland so in terms of equality its very unequal and you are but a fly in the ointment.

remember too there are places to go to find out rights.
NUI galway and a disability and law unit and many there are incredibly helpful.
most disability organisations will be able to tell you how to cope with the hse and manage your dealings with them.

but be warned, its a very very hard road, and they want you to give up.
they want you to fail.
it is about being true to yourself and your integrity.  if you have been harmed the truth will come out, someone it will and someone will bring it out even if you feel it never will be heard, it will.

never be afraid.
many are in the same boat.

and to make sure you are going to improve the state of hte nation, do not vote this present government back in because what they have done to the legal system, the human rights commission, the equality tribunal and how they weaken the citizens who have least ability to fight is a crime against the citizens of this state.
angry, you bet i am.

about consent:  this is the national policy regarding consent on all levels of healthcare;
Know your rights.
National Consent Policy
What is Consent?
Consent is the giving of permission or agreement for an intervention, receipt or use of a service or participation in research following a process of communication about the proposed intervention.
Why is Consent important?
Consent must be obtained before starting treatment or investigation, or providing personal or social care for a service user or involving a service user in teaching and research (all defined as ‘interventions’ for the purpose of this policy). This requirement is consistent with fundamental ethical principles, with good practice in communication and decision-making and with national health and social care policy. The need for consent is also recognised in Irish and international law.
Other than in exceptional circumstances, it is important to note that treating service users without their consent is a violation of their legal and constitutional rights and may result in civil or criminal proceedings being taken by the patient. Such exceptional circumstances relate primarily to emergency situations where it is necessary to intervene in the absence of consent in order to preserve the service user’s life or health, or where the service user lacks capacity to give personal consent and a decision is made in his/her best interests.

What are the requirements for a valid consent?
In general terms, the constituent elements of a valid consent are:
Decision-making capacity
Disclosure of information
In everyday health and social care practice, circumstances arise which may challenge frontline staff in seeking informed consent from service users. These may relate to, for example, carrying out an assessment of the capacity of the service user to give consent, uncertainty regarding the age at which consent may be given, what legal issues arise regarding children of unmarried or divorced parents, children of minor parents, wards of court, and so on.
What is the aim and scope of the National Consent Policy?
The National Consent Policy provides one overarching HSE policy to guide staff. The need for consent, and the application of the general principles in this policy, extends to all interventions conducted by or on behalf of the HSE on service users in all locations. Thus, it includes social as well as healthcare interventions and applies to those receiving care and treatment in hospitals, in the community and in residential settings. How these principles are applied, such as the amount of information provided and the degree of discussion needed to obtain valid consent, will vary with the particular situation.
Further information
Link to National Consent Policy and guidance documents
Who can I contact for more information? 

Quality & Patient Safety Division

Tuesday, November 3, 2015


today is Tuesday 3rd November 2015, doing a bit of mathematics here i am on this planet now nearly 63 years!  just think of it, thats a long time.
ok then.
i will tell you another fact of MY life, its not a life!
ok then.

If this is the FACT of my Life at 63yrs of age i want to ask my friends who come peek in and see what i have to say, to have their say on it all.
it matters.
on many levels it matters.

well, for starters MY Life matters to ME if not to anyone else, it does to me.
It matters because experience outside of my own might be the very experience i need to move this 63yrs on to 64yrs as a happier adventure.

the criteria for your ADVICE as in 'the bloggers agony aunty and uncles write back' are many.
To be considered....are.....
1.  the blogger is sick....i mean....very sick.
2.  the blogger tires easily....that effectively means she is flat on her back, sleeping alot
3.  the blogger gets depressed....(no, one of your suggestions cannot be head straight to the psychiatrist, can't stand the breed and believe they are more dangerous than the Life itself).
4.  the blogger is cash common language....the blogger is basically out of cash.
5.  the blogger has a sister, twin in fact.
who is..
1. 2. 3. (same applies) 4. and 5.

This blogger needs to regain her joy, the joy of life, the joy of being, the joy of where i am, where i live, etc.

so its a tough task i have set you all.

Find my life and give it back to me.
i have lost it.
many years.
i know its not under a stone or yet under the gravestone or headstone.

its just gone missing a while for a bit.
a bit too long, like.

i kinda want it back.
so i am asking for a road map, as in Treasure Island style, not for money, for my Life...Back.
Ideas.  A task force for Ideas.

the world is spinning as we speak and as i know it is, so too is time.
its running at equal earth shattering speed and before i collapse with a menieres attack i want to live a bit better.
Joy its called.  Well, i think its called that.  it was called that the last time i felt it.

but it may not be here anymore as also i think i am not the only one losing their joy, but then in real terms, the task is to help this one blogger find hers.
it may seem selfish to ask for my life back please, but i think its important.

It cannot be found under a stone (i don't think) because it was never there, before now.
it was up there with blue skies and sunny days, in the head department.
its gone to me boots.

What can I get my life back?.....................Please.

If your life depended on it, will you suggest how to find my life, give me the road map.
(or two even)
there is a shortage of road maps.
I have two on the ledge above the drivers seat of my van, but they are no good.
i need yours.

have you got one to spare then?
i hope the hell you won't say 'no, i haven't.'
i hope its because you are not the equally selfish git and won't allow me in on it or into a type of Joy thats gone missing from my road, map and life.

i want a sort of "how to build"
I want a sort of "where to travel"
I want a sort of "how to find friends"
or something like, Life on a shoe string,"  "Life with no life at all"  "Life with dogs"  not "its a dogs life life, but with dogs"

I want the sun over my head (not strong now cos i don't like strong sun) but there nonetheless.
i want blue skies too.
Not gray, and don't bother telling me i am asking for too much because we are heading into winter, one that the experts advise will be the worst in living memory.
i tell you it couldn't be worse.

I am going to give you a few pictures to sort of help you on your way with the Ideas and road maps.
everyone likes pictures.
everyone loves pictures.
so after i show you some pictures to give you ideas, i then want yours.
as in send back your ideas for me by way of comments and you could get another picture.
you will get a 'thank you blog'  (doesn'
I understand, yes i do, i REALLY do!

And i love you very much...










t have the same ring as 'thank you letters,' but then we are actually out of that time zone now for good i think).

i am praying now that the ideas will be good.

I like photography, people, sheds, nature, sea, driving, the sister and my dogs.
those are hints by the way.
i like sometimes, diy and upcycling and repurposing and tidiness.

I want a new van and a proper usable wheelchair.

after that my life is in your hands.
well before that my life is in your hands.

i will await.
for your Ideas.

Saturday, October 24, 2015

'mustn't grumble'.......why not?

Is it particularly Irish to hold back and not grumble?
What is so awful about saying it as it really is?

If it is not like this, then you wouldn't need to grumble because then there would be nothing to grumble about.
therefore, Grumbling is, usually 'voicing a truth no one wants to hear'  rather than 'grumbling over nothing.'

A funny thing also about 'grumbling' those who 'grumble' are reminded by others, of the dying, the starving, the homeless and the cripples.
That is so you put things in perspective.
But 'Grumbling' is relative, as are levels of 'grumbles' and where one 'grumbles' and about what.

to me, as a person who has a strong social conscience, who hates crookery, deprivation, injustice and cruelty i still have issues.  I want to 'grumble.'
And why?
Because simply put we all have 'issues'  and some 'issues' are worse than others, but remain a grumbling troubling boil - on the bum-er of life itself.

Grumbling IS fair.
its not fair to compare for instance, pain which is caused by disease as against pain which is caused by a snapped spinal cord injury.
Has anyone ever heard this one 'now you would have something to grumble about if you were "Joe Blogs, he can't get out of a wheelchair."
Maybe he cannot.
I am not saying he is having the life of fun, hilarity and is anyway joyful he cannot get out of a wheelchair.  i think its fecking awful he cannot, but maybe he might see it differently, he might say he is bloody lucky not to be dead.
That's the difference.  We cannot presume someone is actually worse off.

therefore we also have to say the levels of grumbles are as variable as there are different continents on the planet and different ways of living and the troubles relative to the different people on the planet.
no two will be the same.
So end of lecture and the beginning of my grumble.

To me its a pretty big grumble.
I am profoundly depressed about it and i mean it.  I can say this in a depressing announcement or i can say it in a quirky way.
it doesn't really matter, hence the way one says it doesn't determine how bad it is.

to me to be honest i am falling apart at the seams.
I am telling my listeners what place i was in and how my life is panning out.  A decade ago it all began.
It wasn't that brilliant, but then i don't think any person has it plain sailing.
It certainly wasn't as traumatic as i am finding it now.
it was my home, my community, it meant the world to me
I was then settled in more ways than one.
i was happier than i was say, growing up. I was happier than I was when I tried and failed to work in the normal sense of the word.   I was as happy as I could be given the circumstances I found myself in.  I was in a real community that bothered and i bothered about them.   A lot.
I felt safe, I felt also needed and i felt  held by my community.

I didn't have a family, I knew really they didn't care, but did I need it (i did actually but even today I know that this may be a bit unrealistic though I need them more than ever), i don't think they are going to actually be there for me.
but i was happy then.
a new laptop awarded by the ADF which attempted to have me continue being creative.  It did until some eggit in the HSE decided i needed to move away from a place I loved
i got very unwell.
here is the biggest grumble on the planet.
i got so unwell i was using a wheelchair and a mobility scooter more and more, and i was languishing horizontal more then ever and the studio was gone and my painting days were over.

my older sister had died some ten years prior to this and my dad left me a tiny town house in a posh side of town, but why move when i felt really good in the secure community i was in.  It was also owned by my twin, who had her rights on this as well.
mags, my twin sister, when she was not yet unwell at the time, helped me decorate the home i loved when i lost my studio and became so very depressed about it all
but what happened next was like something out of a horror film.
there are two very large organisations in Ireland, both state funded therefore state er, funded.
the county council and the HSE.
Which is worse is anyone guess but definitely they have a very 'Irish thing' in common.
Responsibility and 'ownership of mistakes' isn't high on their agenda.

What happened next shouldn't have happened.
The person writing this blog wasn't in social housing for nothing.
I come from a rich and well educated family, so if i too am educated...and i am, it goes without saying that something must have happened.
we use the term in this little country as well, 'down on her luck'  but it was more than that.
i crashed out of living and life, i wasn't able for it.  i was drowning in society and now i understand why even if i didn't then.
so I became so unwell I nearly fecking died on the stairs of this social housing unit.
They were becoming too much for me.
Ending in hospital three times had the OT persuading me that my life wasn't worth living if i could be dead in the morning from them stairs.
Well that's fine i suppose and not a bad notion, in theory, that i could have been dead on them stairs, one poor man was and did die on them stairs across the way.
a 'unit' (that's what a home that is given by the state is called here, a unit ffs.)  came free downstairs.
it was similar to the one i had upstairs, so i didn't see it as much of an issue to move downstairs and ask to move downstairs.
well the council thought it a very big deal actually.
i seem to need AIR but this was before i knew why, i had developed Primary Sjogrens Syndrome, the first of a long list of ailments i went on to develop and Ireland left me to rot.  i had to leave the country to get this diagnosis and others.
they saw it as a big issue.
despite three consultants in medicine reminding the council and the HSE that  I would not deal well with change and  not to move me from a community i felt good and secure in and that my needs were such that i shouldn't be moved away from it.
well sod the consultants says the council, more or less because the did sod the consultants and moved me anyway.

I always loved nature, plants and always wanted a garden, but not at great expense, which was proven to be the case.  Sunflowers never thrived here with the cars and their fumes.  you have to give me some marks and them too for even trying.
and where was the HSE, well they were no where to be seen, they were once begging the council to leave me on the street i loved after that then they left me to it.

it played out like a bad dream.
it was a bad dream, far too bad.

I found myself alone, very alone.
There was  no one helping me move downstairs at all so much so i was shifted out of the area altogether.   Not only that i was shifted to an area which was all male.  I was a vulnerable woman, single, once sexually abused by a cleric was being moved there while most of the little vulnerable children were moved out.
so what is the difference between threat to a child and threat to an incapacitated woman in an enclave of alcoholic men i say?
well either could be dead, from any manner of issues.
i was dead really because as soon as i got there i was dead.

Finally i was shot at.
So the council says to the HSE that 'we didn't manage this well,'  like bloody hell they didn't.
the HSE said 'we am distressed by all of this.'
One thing though neither found it their place to shift me out of there once i was shot at.
oh and I have the evidence of a gun slinger on the wall, for i didn't know what was happening as i am very deaf except i was being harassed.   Up went my camera and i shot her.  Yep it was a girl gun slinger.

I hit her between the eyes.
she was a lousy shot for she left five bullets around my swing seat and two more by the back door.
I was target practise i suppose.
I wasn't dead but i wasn't staying there either.

so i got nine points  and put back on the list for rehousing.
i was told by another HSE OT that i would be dead before they would find me a place to live.
losing the garden but i had lost my soul so what did i care right at that point
when a neighbour said i would never be able to grow anything, that the kids would rip em all up.  They didn't. They had great respect for me, i loved them.   I left presents for each child that i grew to love and they who loved me. why did they not rip up all my plants and cause me that harm?  These were younger but when i left a large table out which wouldn't fit into this new place they battered it to bits.  So angered was I, I went to every home in that cul de sac and demanded the kids write an apology and bring it to my door within 24hrs.  They never thrashed another thing belonging to me again. 
so i felt i didn't want to be dead before that.
we sold the small town house and after all my life living in one county sick, depleted, stressed to the point of a nervous breakdown i moved to a different county.
Yes, there is a human being on this sofa, its my twin, now with a diagnosis of Parkinson's disease, she was living at that time in the house we owned but we had to sell this.  she had no where to live until we both found a home.  She spent eight months on my sofa and it was a small sofa.  There was 'Family' who could have put her up, if they cared.
well no it didn't end here.
well its as if i am withering under the weight of depression, isolation, distress and despair.

but i know not a sod person cares a shit  i was left to it all.  There wasn't a lot i could have done.
So now i am here in this county.
No it doesn't end there because this county's HSE got at me.
I kid you not i have been very unfortunate.

name calling comes to mind, some very suspect stuff put on my medical files and no answers at all but more stress and strain from an organisation that i loathe now with all my might.
i think, well, what i think of the HSE is very evil  and dark thoughts indeed.

yes, there are some nice people within the organisation, but the organisation has one god and that is the organisation itself.
it doesn't really matter if its about people, the Irish people's health which they are all about.
Most forgot that part long ago, including this Government who cite Article 18 section something as to why they cannot get involved with the hokery pokery that is going on with a lot of sad and stressed and diseased and disabled ill in this small land.
Its not their problem according to them.
But then so too is it not the HSE problem, nor the council?

well its someones problem because once i was happy and now i am not.
Not only that, i am miles away from all i know and in the middle of the sticks, with no friends or even one person i know.
i am too sick really to start all over again and i miss my old life.
the life the consultants told them that i would not be able to leave and they are right.
so I am now in the life that the consultants said to them, both the HSE and the council that i wouldn't be able to adjust to.
I am not and i havent, they were right so.
that's my grumble.  i am sticking to it.
its a big one for me.
if i am now angry as well, who could blame me.

the grumble is this.
there isn't one single glorious thing i can think of that is relevant to this country, the state operatives, and the HSE.
there is one person who is also suffering, and partly because i am suffering and partly because she wasn't dealt a great hand once she met the HSE after the NHS, which to her and my eyes is a damn sight more civilised than the HSE.
i rest my case.
Ah, i will end on a better note, after well over two centuries we have or are about to get rid of the Lunacy act, i kid you not.   Many are incredulous about this one too, that it took so long!  They call it 'an embarrassment.'
Yep, we still have lunatics here in Ireland but we shall be getting rid of the lunatics soon.
 unfortunately not the ones in the HSE or the Government.  But those who are lunatic through no fault of their own shall be decently called what they always should have been called long ago, human beings who just happen to be learning disabled or mentally ill.
Not lunatics at all, now or ever but its taken us all this time to scrap a constitutional law they didn't know how to go about scrapping, until two centuries later, they couldn't wrap their little brains around that one so how on earth could they cope with little Ann eh?
god forbid how could they?

You could have said the same about me at the same place at the same time.  'Do not move'
we left -
but arrived at a new type of hell, with the same hell from the HSE, but even that was in complete contrast to the old type of hell. one more innocent. This kind definitely not innocent.

Tuesday, October 20, 2015

Men v. Women The war of the sexes - in H.......

Is the writer a woman? Does she own these dogs?  Is she therefore a wimp?
Answer - the writer is a Woman. Be warned -  The Writer ain't no pushover
there are many wars to be honest, between men and women.

if i am right and the hits on this title are large, we all seem to know about them.

Did you know of one particular one though?


Well, Women know about this alright and its also a proven one, the war is on..... Men!

Its not so much a war, but it is definitely about 'some mothers do have em'  and its about men who are doctors, and i am concentrating on one country, Ireland.

its a fact.
we are an incredibly misogynist country.

but it seems its also in politics and religion, of the latter the whole WORLD knows about that particular war, the fairer species is inferior.

but is it too about 'Trust?'
are women to be trusted.

is that what it is, rather than a war AGAINST women.

is it that we are inferior because we are not to be trusted?

or is it about 'Intelligence?'

Is it that we are stupid that we are not to be trusted and there is a war on.

or is it about 'Being Liars?'

Is it that, we are stupid, we lie and therefore cannot be trusted?

or, wait again, is it about Hormones?

We are stupid, we lie, we are not to be trusted because when our hormones flare we do too, therefore we are inferior!

its none of these things.

In fact women do better, in Ireland in science and maths in the Leaving certificate.
We work harder - fact.
Is this a Doctor?  Is this a Man's Dog or is it a Woman's dog?
the answer ..............This dog is both a doctor and it belongs to a female, who is not a doctor!
Is this a doctor?  Is this a man's dog or a woman's dog?  This is a Doctor!  YES!  SHE is a WOMAN!
this dog is a woman's dog, belonging to a woman who isnt mad on Irish Male Doctors!
therefore we are bright, if not brighter than men.

can we be trusted, well we can actually because we are trusted all the time with little helpless babies, its men that are not to be trusted with them!

is it because we are not strong.

we are actually, very strong.  Why do i say this, because as soon as there is trouble in the camp when it comes to children, men usually just walk away.
if a child is disabled the men walk out.
women don't, they stay, the face it - for better or for worse they face this.

Do we lie?

well no, no more than men, we are trusted to have a bank account for instance.
and we are more trusted to deal in finance and why do i say this?

because what brought this country down were men, male bankers, all of them.
so too the developers, and the housing trade, men, all of them.

so why when it comes to health we are 'perceived' as lying, whinging, stupid, weak, mentally defective and lazy?

its a good question, innit?

and i think the men should begin to answer them square on.
because, i can!
I am bright, intelligent, fair, strong and mentally able.  I am also practical and do not lie.

that's why i can say what i say.
the men are at fault in all of this.

Men chose to see women as weak, feeble, liars, hormonally strung high and daft as a brush.
I chose to see men as misogynist.

because they are!

How do i say this regarding health care and health and medicine.
here is why.

because i have been dealing with two health care systems for the past few years therefore i know men treat women dreadfully badly when they are doctors in Ireland as opposed in the UK, in the NHS.

here is the difference and here is the proof.

I go back as far as 2008.
can you tell the difference?  who may need a psychiatrist?  Is it the women in the wheelchair or the man with a book on his head?
this was my first trip out - i had to get out because Ireland left me for dead, i was to return home and take the anti-depressants.
it didn't matter that at the time i was a wheelchair user and couldn't get out of one!
that's entirely beside the point!

i went to London.
i was treated courteously, i was treated with a friendly embrace (not physical) but it was embracing and wonderful.
within five minutes and a bit of a chat i was diagnosed with Primary Sjogrens Syndrome.
whether it was because Ireland didn't know about this condition or didn't bother to test for it i am unsure.
but it only took five minutes!
i kid you not.
confirmation came with the bloods, but if the Irish had looked at the bloods they would have seen what i saw and which saw me head for the Lupus Centre, immediately i could.
Is this a Woman?  Is this a Doctor?  Is she Mad or an Artist?  This is a woman, who is NOT a doctor, but yes, she is a Mad Artist!
I did not do seven years medical school nor did i do my internship or be a registrar in any hospital.
i just took the same piece of paper with the same blood tests results that all Irish doctors had and i researched.  it was Lupus to me, but ah i was wrong but nearly right so that's clever with no degree so it is, it was sjogrens syndrome, the same spectrum of autoimmune diseases.
it should have been easy peasy to an Irish medic, we are supposed to be trained up well.

anyway a year later i was walking and back for review in the UK.
i was greeted with outstretched arms - they couldn't believe it, i was not in a wheelchair, i came into the room walking.
'my miracle patient!' said the consultant.
not really, i was just treated and under treatment and it was working.

but of course that wasn't the only thing happening and i had considerable muscle wastage.

back in Ireland i was left, i have now been out a few times, and all these outings brought a diagnosis.

OK then after five days in a side room in an Irish hospital i was told to go home and lie in a darkened room, my symptoms were probably migraine.
well there is a vast difference between menieres and migraine.
now even the Irish should know this one.

no i didn't do the research on tis but the next time out they discovered it.
yep, simples.
well it should have been to Irish medics.
they do diagnose menieres disease.

but in my case i was left in a side room.

the bit about dodgy genes and the fatigue, i was simply told i had ME.
well, no i couldn't said a guy from Imperial college UK, if i already have crohns i couldn't have ME.

but there is more to it than this.
its the way the Irish walk too that is different, that is the Irish doctor, they walk funny, see.
the men do anyway.
is this a woman?  Or...Is this a factory made tin woman pretending to be a woman?
Its brainless, therefore its not a woman, its tin, therefore its not a woman, it doesn't not have blood in its veins, therefore it is not a woman. It's a Tin woman NOT pretending to be a woman
In the UK they walk well, well they walk well beside the patient as they push her, yes A WOMAN back to the ward, they actually do not go all paralysed at the thought of walking/pushing a wheelchair back to the ward, and pushing a woman no less.

they do it, and they speak as if you have intelligence, about all manner of things, including travel and art.
here they wouldn't do that, or couldn't, i have yet to determine.
Do Wheelchairs move suspended from ceilings?  Are wheelchairs pushed?  Who is usually in them?
No, wheelchairs are not usually suspended from ceilings, they stay firmly on the ground.  They can be pushed (by a man or a woman!)  Sick or Disabled used them (no, not always those who cannot use their legs, eg spinal cord injury)
finally, do wheelchair users usually wave hatchets?  YES and NO!  Believe me there are many reasons why they can and sometimes do  not or chose not to.
its also physically impossible to swing from the ceiling in the horizontal position.
but they don't walk you to the ward.
they never push a wheelchair
cos they cannot walk that well nor speak that well to a woman patient, or wouldn't.

Who are these Women?  Are they Sick?  Why are they in the same bed together?
They are Ann Kennedy and Dr. Margaret Kennedy
They are Sick.
They are saving NHS Laundry (NO), they are sharing the only Fan on the ward!
Would Male Twin brothers who are Adult do this?
 another thing too.
they dont sit cross legged at the feet of a patient.  let alone a woman.
but they do that in the UK, even consultants.
especially if they are examining legs.
no this isnt sexists, its about doing a medical exam on legs.
they get down the level of legs, bare ones at that, of a WOMAN!  oh my, such a difference, such a shock.
And not only that, but they collaborate.
they actually do joined up thinking, they talk to a lesser species as if she is actually an equal.

no in ireland they wouldnt do that, or couldnt.
they will not work alongside a physiotherapist, that is rarely, i knew one female doctor working with another female doctor, together in the one room.
but never with a male doctor.

they just do not do it.

Men do it so so differently here.
they like to stick to the one room, they feel outside their comfort zone if they do not see a patient in a room which has a desk between patient and himself.

Doctors here, consultants, ask you at every consultation what medication you are on.
over 'there' they do not.
they may do once, the rest of the time, its written in stone, that is on file so they can refer to it, before a consultation.

its surprising too cos in the uk they have a good deal more patients than here.
i mean, we have only roughly four million, given that a million are in effect healthy.
in the uk they have about 50million, given that eight million are healthy.
Is the Owner of this Foot a Woman or a doctor?  is she a Liar, ignorant, feeble, cheat or hormonal?
Does she need a Doctor, a physiotherapist, botox and proper shoes?
The owner of this foot is a Woman.  the Owner of this foot is a Doctor.  She is NOT a Liar, She is Not Ignorant, she is Not feeble, NOR a cheat Nor Hormonal, the hormones are as dormant as most Irish doctors (males that is)
so its not that we are ignorant, weak, feeble, mad as a march hare, liars or cheats, that they treat us as if we are.
its because they perceive us to be liars, cheats, feeble, mad and hypochondriac.
they chose to do it.
the part that tells me one thing about the inferior versus the superior bit is, they dont push wheelchairs.
they simply wouldnt do it, its beneath them.

i call this absolutely pathetic so i do.
some of our most famous scientists and doctors have been female.

and i will leave one note to dwell on here with pure joy to be hold.

Every single condition that i have now presently, has been diagnosed in the UK.
nothing in Ireland.
Bar of course, hypothyroidism, which i think would be easy and crohns which is dead easy cos you can be absolutely sick as a parrot with that and i had to have surgery.
but, here is the catch, he didn't believe i was feeling unwell on the day of discharge.

what happened, my wound burst three days later and i was back in hospital.
i nearly flipping died.

we have the most amazing male doctors in Ireland.
someone should say something about this, i really think they should.
they could even do a doctorate on it.

it would be such a revealing thesis, but i think my blog wins me that doctorate.
i have it in one.
men are too posh to push - in Ireland
they don't trust women.
they are misogynist in Ireland.....Finally.....Would you TRUST these Dogs?
No, especially the one on the left, SHE BITES both Male and Female!