Sunday, October 15, 2017

Healthcare in Ireland - not for identical twins- rights and evidence of RIGHTS to healthcare denied to Twin sisters in Ireland

the fight has been 'unreal'  and our needs have certainly NEVER been met here.
On all levels we have been let down and consistently so.
my journey has been 'unreal'  left like this for two years (dated circa 2007) before i was allowed over to UK to find out why i was so ill and could not walk at this stage - though i taught myself to walk again after this first "out."
first image was 'then' (2008) and this is 'now' (2017) - the fight within has to be for all sick and disabled, as we had planned a camp out but gave up, too ill and it did lack organisation, next time it won't!  Should we have to do this in Enda's so called 'modern society?'
a level headed piece in the Sunday Independent today, really encapsulates needs which doesn't 
seem to be too much to ask given the complexity, i will share its link here
this image that goes with this latest article belies the pain beneath this facade, the facade is a 'truth in personality' if allowed, we want to live life with a sense of fun and happiness, but this image belongs to the time to come, not the present experience as we feel it right now.
an obscene situation to be trapped in Ireland like this, taken this year in dire distress at decline and no care here

should very sick old women have to nobble the Minister Finian McGrath outside the Dail about the ratification of the Human rights convention and more besides, and get an equally consistent fob off for our efforts?
 i have consistently fought my corner for the care i know we should be getting and faced the state with very real disadvantage for those of us at the lower end of the economic strata who have to use the public healthcare system here.
it was and has been an 'obscene' battle of wits pitching very sick people against a massive organisation - this time the bullying that forced this article as they threatened to take away the wheelchair i had

Public Healthcare is for people who do not have insurance.
this means we are being provided for as is our right as citizens, but what many do not fully realise - very few are getting the care they need, lists are huge now, dangerous practises are at play and unqualified staff are doing complicated surgery way beyond what they are trained to do.

this is 'guinea pig' style healthcare where 'anything goes' for the poor.

i am fighting this injustice.
i have a limited life left and i experienced a packed full life of hardship and abuse but i never expected any of this to stem from our state systems, this was a real eye opener that the abuse we had had to overcome through our younger life is multiplied when you become so ill at the end of a difficult life span and face large faceless organisations who are in complete denial of their remit to care for the sick and the vulnerable.

fight on i will.
watch this phrase 'persistent complainers' and look for it on your files, because those who fight their corner can be labelled this and thereafter you will be ignored.  they made this stance unknown to us under their 'vexacious complaints' policy, thankfully we won our case against this awful terminology and with that the engagement with the HSE has begun, but its very slow and far too slow to sort a veritable mess.
condemnation of this accusation came from many groups and politicians.
looking at the fabulous expansive detail in policy that has been enacted which must have taken yardage and funding to produce remains that sophisticated papers still take ink but after that we have what appears to be 'impasse'

Standards of care for people with disabling (progressive and static) neurological conditions in the hospitals and community

the Rare Diseases Plan

Plans devised by Experts spanning 7 years.

Action thus far – zero – for Ann and Margaret Kennedy in the context of complex disabling progressive neurological conditions (in the hospitals and community) and the Rare diseases Plan of 2014

we contend that NO diseases specific care, treatment, oversight, diagnostic tools have been use in the past two years and some date back to lack of disease appropriate treatment and therapies have ever been implimented as first recommended in 2009.

this is a violation of our rights to healthcare.


The Nice Charter of Fundamental Rights will soon be part of the new European constitution. (i believe it already is) It is the basis of the declaration of the fourteen concrete patients’ rights currently at risk: the right to preventive measures, access, information, consent, free choice, privacy and confidentiality, respect of patients’ time, observance of quality standards, safety, innovation, avoidance of unnecessary suffering and pain and personalised treatment, and the right to complain and to receive compensation. 

These rights are also linked to several international declarations and recommendations, issued by both the WHO and the Council of Europe. They regard organisational standards and technical parameters, as well as professional patterns and behaviour. 


The Charter of Fundamental Rights, (we have signed up to this) which will represent the first “brick” in the European constitution, is the main reference point of the present Charter. It affirms a series of inalienable, universal rights, which EU organs and Member States cannot limit, and individuals cannot waive. 

♦ Article 35 of the Charter provides for a right to health protection as the “right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices”.

Article 35 specifies that the Union must guarantee “a high level of protection of human health,” meaning health as both an individual and social good, as well as health care. This formula sets a guiding standard for the national governments: do not stop at the floor of the “minimum guaranteed standards” but aim for the highest level, notwithstanding differences in the capacity of the various
systems to provide services. 

♦ In addition to Article 35, the Charter of Fundamental Rights contains many provisions that refer either directly or indirectly to patients’ rights, and are worth recalling: the inviolability of human dignity (article 1) and the right to life (article 2); the right to the integrity of the person
(article 3); 

 2.Other international references

The fourteen rights illustrated below are also linked to other international documents and declarations, emanating in particular from the WHO and the Council of Europe. As regards the WHO, the most relevant documents are the following:

- The Declaration on the Promotion of Patients’ Rights in Europe, endorsed in Amsterdam in 1994;


This part proposes the proclamation of fourteen patients’ rights, which together seek to render the fundamental rights recalled above concrete, applicable and appropriate to the current transitory situation in the health services. These rights all aim to guarantee a “high level of human health protection” (Article 35 of the Charter of Fundamental Rights), to assure the high quality of services provided by the various national health services. They must be protected throughout the entire territory of the European Union. 

1-Right to Preventive Measures

Every individual has the right to a proper service in order to prevent illness. The health services have the duty to pursue this end by raising people’s awareness, guaranteeing health procedures at regular intervals free of charge for various groups of the population at risk, and making the results of scientific research and technological innovation available to all.

2-Right of Access

Every individual has the right of access to the health services that his or her health needs require.
The health services must guarantee equal access to everyone, without discriminating on the basis of financial resources, place of residence, kind of illness or time of access to services. An individual requiring treatment, but unable to sustain the costs, has the right to be served free of charge.

Each individual has the right to adequate services, independently of whether he or she has been admitted to a small or large hospital or clinic. Each individual, even without a required residence permit, has the right to urgent or essential outpatient and inpatient care.
An individual suffering from a rare disease has the same right to the necessary treatments and medication as someone with a more common disease.

3-Right to Information

Every individual has the right to access to all kind of information regarding their state of health, the health services and how to use them, and all that scientific research and technological innovation makes available. 

Health care services, providers and professionals have to provide patient-tailored information, particularly taking into account the religious, ethnic or linguistic specificities of the patient. The health services have the duty to make all information easily accessible, removing bureaucratic obstacles, educating health care providers, preparing and distributing informational materials.

A patient has the right of direct access to his or her clinical file and medical records, to photocopy them, to ask questions about their contents and to obtain the correction of any errors they might
contain. A hospital patient has the right to information which is continuous and thorough; this might be guaranteed by a “tutor”.

Every individual has the right of direct access to information on scientific research, pharmaceutical care and technological innovations. This information can come from either public or private sources, provided that it meets the criteria of accuracy, reliability and transparency. 
4-Right to Consent

Every individual has the right of access to all information that might enable him or her to actively participate in the decisions regarding his or her health; this information is a prerequisite for any procedure and treatment, including the participation in scientific research.
Health care providers and professionals must give the patient all information relative to a treatment or an operation to be undergone, including the associated risks and discomforts, side-effects and
alternatives. This information must be given with enough advance time (at least 24 hours notice) to enable the patient to actively participate in the therapeutic choices regarding his or her state of

Health care providers and professionals must use a language known to the patient and communicate in a way that is comprehensible to persons without a technical background.
In all circumstances which provide for a legal representative to give the informed consent, the patient, whether a minor or an adult unable to understand or to will, must still be as involved as possible in the decisions regarding him or her.
The informed consent of a patient must be procured on this basis.
A patient has the right to refuse a treatment or a medical intervention and to change his or her mind during the treatment, refusing its continuation. A patient has the right to refuse information about his or her health status.

5-Right to Free Choice

Each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information. The patient has the right to decide which diagnostic exams and therapies to undergo, and which primary care doctor, specialist or hospital to use. The health services have the duty to guarantee this right, providing patients with information on the various centres and doctors able to provide a certain treatment, and on the results of their activity. They must remove any kind of obstacle limiting exercise of this right.  
Ann and Margaret Kennedy believe this fundamental right has been quashed through prevarication, stalling and claiming 'ignorance'

A patient who does not have trust in his or her doctor has the right to designate another one. 
Ann and Margaret Kennedy contend this should NOT take over a year and a half to deliver!  it therefore contravenes their right to treatment in a timely manner consistent with their disease burden

6-Right to Privacy and Confidentiality

Every individual has the right to the confidentiality of personal information, including information regarding his or her state of health and potential diagnostic or therapeutic procedures, as well as
the protection of his or her privacy during the performance of diagnostic exams, specialist visits, and medical/surgical treatments in general.

All the data and information relative to an individual’s state of health, and to the medical/surgical treatments to which he or she is subjected, must be considered private, and as such, adequately protected. 

Personal privacy must be respected, even in the course of medical/surgical treatments (diagnostic exams, specialist visits, medications, etc.), which must take place in an appropriate environment and in the presence of only those who absolutely need to be there (unless the patient has explicitly given consent or made a request).

7-Right to Respect of Patients’ Time

Each individual has the right to receive necessary treatment within a swift and predetermined period of time. This right applies at each phase of the treatment. The health services have the duty to fix waiting times within which certain services must be provided, on the basis of specific standards and depending on the degree of urgency of the case.  Ann and Margaret Kennedy contend that this is about the most serious error of protocol within these rights for time is of the essence and the protracted prevarication to offer and deliver service has endangered both their physical health and their psychological wellbeing

The health services must guarantee each individual access to services, ensuring immediate sign-up in the case of waiting lists.
Every individual that so requests has the right to consult the waiting lists, within the bounds of respect for privacy norms.
Whenever the health services are unable to provide services within the predetermined maximum times, the possibility to seek alternative services of comparable quality must be guaranteed, and any costs borne by the patient must be reimbursed within a reasonable time.  Ann and Margaret Kennedy contend that there has been NO effective oversight, care or delivery of treatments, diagnostics for the past two years and this is far too long and we have the RIGHT to seek althernative services of comparable quality and this must be guaranteed

Doctors must devote adequate time to their patients, including the time dedicated to providinginformation.

8-Right to the Observance of Quality Standards

Each individual has the right of access to high quality health services on the basis of the specification and observance of precise standards.
The right to quality health services requires that health care institutions and professionals provide satisfactory levels of technical performance, comfort and human relations. 

This implies the specification, and the observance, of precise quality standards, fixed by means of a public and consultative procedure and periodically reviewed and assessed.  We have been denied this right

9-Right to Safety
Each individual has the right to be free from harm caused by the poor functioning of health services, medical malpractice and errors, and the right of access to health services and treatments that meet
high safety standards.
 To guarantee this right, hospitals and health services must continuously monitor risk factors and ensure that electronic medical devices are properly maintained and operators are properly trained.
All health professionals must be fully responsible for the safety of all phases and elements of a medical treatment. 
we believe we have been harmed by both the delays, the hospital lack of care and lack of being allowed question the safety of all phases and elements of a medical treatment - eg sticking needles in my head forming a blood clot from a registrar who had no patients.  eg not being told i had had a stroke.  eg no delivery of a care plan and admitted as such from the primary consultant who has left us in a horrible situation of no care whatsoever
Medical doctors must be able to prevent the risk of errors by monitoring precedents and receiving continuous training.  my rights to have addressed complaints made to a hospital and by a doctor have been ignored, this is wrong and violates my rights to medical safety and clarity of information and discourse and communication
Health care staff that report existing risks to their superiors and/or peers must be protected frompossible adverse consequences.

10-Right to Innovation

Each individual has the right of access to innovative procedures, including diagnostic procedures, according to international standards and independently of economic or financial considerations.  
we had always known this and no one should tear asunder a process that is available in protocol of rare diseases and complex cases and prevent us from leaving the county leaving us prisoners of the state
The health services have the duty to promote and sustain research in the biomedical field, paying particular attention to rare diseases.
Research results must be adequately disseminated.

11-Right to Avoid Unnecessary Suffering and Pain

Each individual has the right to avoid as much suffering and pain as possible, in each phase of his or her illness.
The health services must commit themselves to taking all measures useful to this end, like providing
palliative treatments and simplifying patients’ access to them. 
 Our suffering for the past ten years with no implementation of a plan and for the past two years with no oversight, doctor and an ability to use new pathways for assessments, overviews, evaluations and diagnostics has been denied and we are in severe pain

12-Right to Personalized Treatment

Each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his or her personal needs.
The health services must guarantee, to this end, flexible programmes, oriented as much as possible to the individual, making sure that the criteria of economic sustainability does not prevail over the right to health care.  we had known this to be our right

13-Right to Complain
Each individual has the right to complain whenever he or she has suffered a harm and the right to receive a response or other feedback.
The health services ought to guarantee the exercise of this right, providing (with the help of third parties) patients with information about their rights, enabling them to recognise violations and to
formalise their complaint. A complaint must be followed up by an exhaustive written response by the health service authorities
within a fixed period of time. this has been denied both Ann Kennedy and Margaret Kennedy who has received not one single response from the hospital, consultant nor the CEO or the HSE regarding our complaints, that feedback and the right to both make a complaint and receive a response.  Please note there are outstanding complaints placed to the HSE itself which have received absolutely no response, investigation or feedback
The complaints must be made through standard procedures and facilitated by independent bodies and/or citizens’ organizations and cannot prejudice the patients’ right to take legal action or pursue alternative dispute resolution.  Margaret and Ann are aware of this and we must receive due process

14-Right to Compensation
Each individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical or moral and psychological harm caused by a health
service treatment. The health services must guarantee compensation, whatever the gravity of the harm and its cause (from an excessive wait to a case of malpractice), even when the ultimate responsibility cannot be absolutely determined.  Ann and Margaret Kennedy believe this to be the natural next step if by not adhering to the above and sorting our situation swiftly and well we shall activate recompensation without prejudice to the present proceedures undertaken right now.
we cannot go on indefinitely in such a manner and it has caused severe harm to us. 

I wish these to be studied and by the end of this week for resolution forthwith on Neurology care input as of end of week.
unless this is forthcoming the activation of legal process will have to take place.
the denial of care, treatment and diagnostic pathways in operation is a denial of our rights and medically entraps us in a state that is inert to our issues and difficulties and causing severe harm, physical decline and psychological harm, distress and suffering.
it is untenable

Friday, October 13, 2017

an Irish way of sorting a very difficult situation

when we entered a process to sort out a mess, we never anticipated years on from that date nothing being sorted.

Yes almost two years of talk has produced talks on talks but no real evidence of change in my life.

my twin and i had been left for a full ten years in severe and agonising fall out from suffering by an organisation, the largest in the state.
only feisty women fight this level of chaos, suffering visited upon them and try to sort it through a process to find that more of the same is occurring.

this is so wrong and abusive.
it amounts to torture and at least we have ratified that convention.

if you agree to sort a mess -the full idea of sorting such a situational mess is to sort it swiftly and move on for waiting in the wings is surely even more of the same.

Nothing in Ireland happens as 'once offs' and if it happened to us, its happening to too many others.

the idea was as the aggrieved to place on the table what you feel will aliviate the suffering, pain and trauma that resulted.

what you get is very different.
the usual word is 'no.'

or the usual word is 'we will look into that and come back to you on that.'  meaning they will give this some thought.

but that too can take forever here, most Irish people know this.

we have sorted nothing in this process.

my life has been turned upside down by this very powerful organisation.
i am lost in this mess.

this sense of 'loss' they love, because if a person shows that they are struggling they will keep up the pressure hoping to break you down.
i am not for breaking down on this, but certainly it is all robbing my quality of life and any life at all.
Life has come to a standstill for ten years.
three filing cabinets later and all the documents tabulated and searched i have a book in there that will equal any McCabe case or 'grace case.'  I see it as another.

what i have seen on file would make your hair curl.

right now i want this organisation to stop playing games with my life, the only life i have and need.

if people come to ireland to work or spend time, be warned.
things turn sour if you need the help of the healthcare system, public that is, because its rotten to the core and dangerous territory to enter into, so beware it will never serve you, ever.
it has no capacity or will to do so.

this also includes many consultants in the hospital settings who treat you as equally dirt like the rest of the public directed services to serve the sick here.

remember we are not a sophisticated nation.
we may have a lot of laughter, wit and intelligence, but that doesn't equate to sophistication.

everything about the healthcare system is dangerous.
but it doesn't have to be that way.

there is no reason for instance to prolong the agony of a mediation process taking place as agreed when they can then walk on by to the next mess they need to sort.

there is something strange in the psyche that to argue over two ants dancing on the head of a pin, consistently and constantly for a protracted time is utterly perverse.

time is money.
time is money when you sent three professionals to a house of a single woman to look at her bedroom, stand at the doorway, look in and see a bed frame with no mattress.

three health care professionals wondering if they gave you a bigger bed would it fit in.
did anyone hear of a measuring tape?

this seems like a war and again it doesn't have to be.  many officials on the ground are decent people, so we have to start looking at the famous managerial groupings to wonder how it all comes about that people act the way they do.

so after coming to look at the bed only they then take themselves off to a public pool to test the water temperature!
i kid you not.

they are unable to provide proper hydrotherapy for two woman with progressive neurodegenerative disease and a complex and rare one so they are going to see if the local swimming pool is warm enough for us.
it isn'

it never has been.
its freezing.

my sister asked on the local forum how did people find this pool.
variations on the theme and word 'freezing' came back as an answer.

the harbour is warmer one said, before deleting the comment probably worried about a slating at the pool, this is a small community.
i am still banned from that forum.

ireland remains a toxic country.
it is toxic to those who cannot pay to get out of trouble once they are in it.

it is toxic for the poor, the sick the vulnerable, the isolated and alone and the needy.

its a tiny slice of USA and trumpitism.
its a tiny slice of UK with the extremes of conservatism killing thousands of their sick and disabled with their pips.

its not a nice place to be and you can feel very trapped and alone here with no ally in the right places.
i hate it.
it may consider it second to the vatican in holiness, but thats not the same as godliness.
it stinks.
not a nice thing to say of your country.

Saturday, October 7, 2017

NO way to run a health (caring) service - THE HSE - refusal to treat

i was 'turfed' out of the hospital where the neurologist had ditched me from but a week later ended in another hospital, CRP rising from norm of 4.0-5.0 to well over 350!
Difficulties arose around Neurological care for me in the public system in Ireland through lack of communication and lack of 'follow-through' of clinical recommendations from many consultants, some also neurologists and some other disciplines.

Notes under FOI sought i found shocking information including a fact that i had had a stroke and no one had informed me.
coupled with suggested tests for:

MRI following raised troponin T
Tests recommended for Dystaumonia and was told to my neurologist.
Tests recommended for 'Auditory Brain Stem potentials'
Tests recommended for pulmonary function.

suggestions regarding CARE PLANS also left completely untouched even though these came from centres of excellence never implemented.

If a person has a stroke, a person a sick person should be told.  the stroke occurred in 2013 no less and this was discovered through FOI in 2016.

Also found on file was an ovarian cyst for immediate attention - this was in 2011 and nothing done until 2016. the cyst has doubled in size and the consultant i showed this to say 'well, if it was cancer you would be dead by now.'
i do not find that very uplifting.

the stress of also not knowing what was going on in the diagnostic fields and no clarity of those tests either had me stressed to the hair roots.
i was asking major questions and getting no responses.

i still have been stone walled.

All my complaints to the hospital group ignored.
HSE have not sorted any of this and i have been sacked by the consultant neurologist who blamed my personality over his lack of interest, care, communication, follow through and his laissez faire attitude to clinical care and governance.

i was sacked and left.
i have been left now for well over 18 months.

the recommendations from the UK still remain undone.
diagnostic tests still remain undone.

the idea now is to go home and die.

the HSE also have their own way of dealing with my healthcare governance.
they have ignored all recommendations for clinical auxillary care too.
'its not going to happen' when they hear the consultants have recommended 'ongoing physiotherapy.
I say 'it hasnt happened' when the clinical experts recommended hydrotherapy in 2009 and its 'not happening.'
The suffering is extreme.

this reads " you are currently on the Neurology waiting list since 20/12/2016.  the current wait time is 41 months for a new patient appointment
what it fails to recognise the medical council clearly states a patient cannot be ditched when there is a dispute, but should be transferred for continuity of care, but here the neurologist 'referred' and therefore i am now being punished by this neurologist in an unseemly manner and it has caused me much pain and distress.  I have been under neurology care for over ten years,now nothing.
A neurologist who will not engage in clinical oversight and governance and make sure he informs his patients when they have strokes can dismiss a patient rather than answer the serious questions around all of this.

this leaves me and my twin now without any medical or auxilliary care for neurological rarity disease/no diagnostics continued and no oversight for a serious mixed connective tissue disease as well.
it absolutely does mean that for two years we have had no clinical oversight for any of our conditions for all this time and now we are imprisoned in the state unable to move.
this amounts to 'refusal to treat' and 'neglect'
we are also now trapped in a country providing no care whatsoever and trapped away from the expertise i can get abroad because of one neurologist behaving badly.

but then who else is behaving badly.

this is a copy and pasted information intro to our National Hospital for Neurology.
'we're known countrywide as the centre of National Neurosurgery and Neurology'....'as a result of this our staff are treating patients on a daily basis who are referred from all corners of Ireland'
they are refusing to treat us, twins with a rare complex disease at a specialist neuromuscular clinic which we do not have access to locally.
they will not take me on saying i only need a general neurologist and its only 'special' if we need surgery and we are outside the catchment area.
this is poppycock, because there is no such thing as 'catchment areas.' in any acute hospital.
the HSE refuse to allow us go to another National Centre even though they advertise as taking people from across Ireland but the HSE demand we stick in this area which is not our wish.
the National centre have a website describing who they permit to come to use their clinics.  they take referrals for all over.
Here is a cut and paste from the website:
Again this flies in the face of the new 'social model' and engaging the patient in an equal role of say in their personal care, it doesn't exist.  It may be policy since 2011.  It may be so, on paper but in actuality, they do not listen, don't care a toss and demand you do as they say while showing the politicians and europe they are forward thinking in adopting the social model and announcing to the world we have also adopted 'NOTHING ABOUT US WITHOUT US (THATS US, PATIENTS)! 

Assistive Technology and Specialised Seating (ATSS)

Who we see

Children and adults with a primary physical disability who use wheelchairs in their daily lives. We give priority to people who

  • Have a progressive condition
  • Are already attending CRC services

Who we accept referrals from

  • Adults with physical disabilities
  • Parents or carers
  • Medical consultants
  • General practitioners
  • Other healthcare professionals

We give priority to people who

  • Have a progressive condition
  • Are already attending other CRC services

About our catchment area

CRC Assistive Technology and Specialised Seating is a national service. It accepts referrals from all parts of Ireland. Clients will be seen for assessment in the clinic closest to where they live.

 its been a night mare of a journey.
one i cannot get my head around at all.

the HSE offer an independent psychologist and three months later 'pull it.'

the whole system is in chaos, but there is fallout as i am suffering.
there is not one single part of my life covered by expertise in healthcare right now.
not one.
while stretched centres deny us care on very spurious pretexts we fight on to get a morsel from the tables of public healthcare when all the consultants really want is an easy life and money from the private sector.
after that the public are shits, causing shits and too expensive for the HSE, the government and when you are older you can go home and die.
it is outrageous and it has been an obscene journey for the past ten years.
i charge both the hospital groups and the HSE for 'refusal to treat'  also 'neglect' and wreckless endangerment of my life.
we have signed up to the law against torture.
we have signed up to constitutional rights to healthcare.

well i am not getting it, in any shape or form.
someone has to be held responsible and accountable for a MESS on a grand scale.

we literally are being refused healthcare.
if you cannot get it, and are being refused it, thats called refusal of healthcare when once we were in the neurology services we have been pulled from it in a horrible nasty way by an errant neurologist who wouldnt and couldnt answer serious questions.