Old too soon, review of summary REVIEW

I was in bray co. wicklow today and found a summary review on disabled people in nursing homes, aptly called 'old too soon'  

there will be typos in my review of this review, but even seeing this, its a damming endictment on what ireland believes to be 'ok' for those who are disabled in nursing homes.

most of these disabled people were mentioned as never leaving their bedrooms, rarely leaving their bedrooms, never engaging in outside acitivities or rarely engaging in outside activities.

we are always calling ourselves a modern society, if you can see below what disabled people are expected to put up with its astonishing in a modern age.

and also astonishing that this review is over a year and a half old and if i am anything to go by, the medical model is alive and well and living in bray/greystones!

nothing has changed, even though a cluster group concerned for disabled persons say it should and say it must.

here is my alalysis as i believe there was a parallel with myself in this area but living in the community where this report clearly says internationally thats where i should be and most disabled people should be, once there doesnt mean they are neglected all over again! 

see what i say, say what you think?

report back to me on this report!

Old too soon

Younger people with disabilities living in Nursing homes in the bray and greystones area of co. Wicklow

Summary version

March 2013

Personal indicators that Ann Kennedy is on the right track for her rights to be met.

Although i am not in a nursing home, the instances of need are appropiate to myself living alone in the community of this same catchment area.

The need too of best practise is highlighted.

The need as well for the social model to be implemented over and above the medical model.

Page 17 of this report:

Living in the community, is recognised worldwide as being necessary to provide better quality of life, while still supporting the person to stay as well and safe as possible.

The Social-Rights based model, person directing their own supports style of supporting people with a disabiity is replacing Medical and deficits-focussed Models of Care

Please note this review of disabled people and approach to disabled people was published in March 2013.

It is done in the Bray Greystones area to which i have been living in during this time.

The emphasis on intrusion on Medical model of care was fully implemented in my case whereas both HIQA and the HSE now undertake as policy the guidelines for the social-rights model, person directing their own supports style of support, this has been denied me under the medical model with no recourse to my wish or my belief as an individual.

Page 18:

For many residents therapeutic or other health and social-related services (occupational therapy, Professional Social Care services, Key workers, speech and language therapy, psychololgy services, community facilitator), other than GP or hospital appointments and physiotherapy, were either not available at all, or only available in a limited manner, and privately paid for by the person or the NH in some cases.  Most had no contact with a Social worker from any service, and this was identified by NHMs as being a major gap, as having a named Social worker was viewed as a route to referral into other services, as a form of Case Management.  A small number of residents had accessed the CIB-funded National Advocacy Service.

This is shocking.

A year and a half since this report i would like to know if this has improved.

It states that unless you have private means you receive so little as  not to make life anyway more pain free, enjoyable or less stressful in management.

This i have found for myself living in the community.

For all intent and purpose, i own a home and that is it, it prevents me from being in a Nursing home, but after that i have as little as the residents in a nursing home.

It is deemed unacceptable.

It appeared that residents with ID or Physical Disability were not on the relevant HSE databases, such as the National Intellectual Disability Database or the National Physical and Sensory Disability planning systems, as would generally be the case if they were in receipt of services for disability providers.  While being on the NIDD or NPSDD is no guarantee of getting an appropriate service, it does ensure that the person is identified, has a Personal Identicfication Number (PIN), and is logged as having qualified and costed support needs. 

I have what is classed as a learning disability as in Aspeger Syndrome and also a Physical and Sensory disability.

Am i on the Data base for either NIDD and NPSDD and do i have a PIN number and have i been logged as having qualified and costed support needs?

Page 19:

An interesting conclusion to the above few paragraphs on changing circumstances the report includes this message:

As can be seen from this information, there is a strong message that the HSE Local Health Office wants to know and hear from individuals who want to change their arrangements – taken to mean housing and care.

Page 20:

With the absense of an independent person-centred review mechanism, it is usually impossible for many residents to give an informed view, state where and with whom they wish to live, due to their knowledge of options, communication capacity, fear of the unknown and known.’

The next paragraph states that clients in NH need to have knowledge on their benefits, access to social workers and other clinical services from the HSE and other Private sources.  Knowledge of how to apply for assessment of housing need and access advocacy and HSE enhancement packages.

There is a strong onus on the NH, as with all providers in this area to protect the persons basic human rights.

It is a worrying trend to keep disabled people in the dark.

I do believe before i fled to Wicklow there wasnt one single person telling or advising me on alternatives to a dreadful social housing unit housing provision for a person who was in danger there.

Lack of knowledge leads to poor outcomes as we see in my case coming here to greystones.

I do not know how to access a social worker, the HSE have denied me one.

I do not know how to access other clinical sources.

I have never heard of the HSE enhancement package.

These are vital even if not in a nursing home environment i am in the local area and the next sentence states clearly :  There is a strong onus on all providers in this area to protect the persons basic human rights.

I have always believed the HSE area of Greystones have not protected my basic human rights.

The HSE has denied me any options other than what they wish to allow me to hear of, allow me to avail of and are not conducting my care under the

(a)The Social-Rights based model, person directing their own supports style of supporting people with a disabiity is replacing Medical and deficits-focussed Models of Care

In dis-allowing empowerment through knowledge, through the Social rights based model my human rights have been violated profoundly and i have been denied my rights to allow me ‘live’ (b). Living in the community, is recognised worldwide as being necessary to provide better quality of life, while still supporting the person to stay as well and safe as possible.

Page 17 of this report.

Chapter 7:  themes for recommendations.

Page /22

·      The person gets lost easily; case management is, apparently, non-existent in the majority, if not all, cases reported on in this study.  Few people access advocacy at this stage.  It is known i needed case management, for i was in crisis, left a state funded housing unit in crisis and arrived in crisis against my wishes to a new county.  It is known i got lost quickly and easily and it is known i attempted access to advocacy eg requested psychological support, social worker and appropiate gp service for my disabilities.

In the situation i was in, the crisis was named and highlighted and ignored, even though i was known to be vulnerable, disabled and with a sensory disability, a physical disability and a learning disability.

·      Timely provision of individual support packages to enable people to return home with support, or transition to shared supported accommodation settings.

In the situation i was in, i was in effect moving away from state social housing and timely provision of my individual support package to enable me to be ‘home’ was all refused, there is little difference in effect from being in a NH here or being in a bought home here, i was here in greystones/bray under this HSE catchment area, the report clearly states its deficiencies, yet even as known, nothing was done for me.

·      Advance planning with targeted intervention in a timely fashion with people with long-term physical or intellectual disabilities, rather than waiting for a crisis to force entry to NH, through strong person centred palnning involving Circles of Support.

·      It is VITAL to note that I had asked for ALL of the above, and advanced planning for myself to prevent me being too old too young and in a NH was requested as a matter of urgency and denied me.

·      When i placed one before the table the social model was denied and i had to ‘take it or leave it’ announcement/pronouncement what the HSE would give, without any consultation or sensitivity to my wishes and my needs as under the social model policy now in practise in Ireland and as in Policy in Ireland.

Page 24

Suggested strategies: 

1.    (this is a review over a year ago by the Bray area Patnership cluster group) and we are now, even in austerity reviewing services and best practise, a plan for best practise is stated as being the solution, i consider this to be paramont, in my case.

2.     austerity does not deny me ‘best practise policy as laid out. 

3.    Austerity should allow me (a year after such has been laid down for nursing homes and applying for disabled persons) and  should also apply to disabled persons living on their own in the community, namely myself in this instance.

4.    Austerity and non residential NH disabled person should receive this equable belief in best practise as stated as policy in this report.

·      A review mechanism must include the person and advocate of his/her choice, must be person centred and must work to include the person’s perspective, even when this is difficult to determine, is changeable, is contrary to the family or medical views and/or is deemed unreliable.  The HSE placement forum may have a role in this review.  /  this is similar to the suggestion of routing of a review by the HSE Local Health Office Manager in the above comments.  This is uncanny and i consider although the word ‘must’ is used here, it has not been considered for myself, myself with learning disability, sensory disability and a physical disability.  I have always been cared for by the state and received state payment of disabilty pension from a very young age.

·      Establish a system for case co-ordination – the case co-ordinator would be required to work in partnership with the person and, where appropiate, their support network and the NHM, to monitor and respond to and highlight changing needs, and to seek out resources matched to the person’s changing needs over the future.

Case co-ordination was established, my suport network chosen and my changing needs over the future named, but no working in partnership has been allowed by the HSE, since the case conference with my support network yielded everything against all our suggestions for my wishes and needs to be met, a resounding NO on the medical ‘take it or leave it/you do not count, medical model ethos of what is now supposed to be passe in favour of the social model of inclusion.  Resources were matched to my changing needs but these were not accepted by the HSE.

·      Ulitmately, where no review of the placement is available to the person, and where the person is deemed ‘fit’ and the person considers, they cannot leave, their human rights violation issue for the person, and needs to be considered and addressed as such.

Human rights of Ann Kennedy have been violated, for there was no review available and i could not leave the medical model, be included in decision making which was denied me (adaptation grant/therapy options/keyworker suggestions and more)even though the Disability Act 2005, the Charter of Patients Rights, and the WHO recognises all these considerations as policy and accepted by the Irish Health Service Executive and named as policy even in the Rare Diseases policy recently launched.

On an annual basis, provide individual personal planning for the person to have a meaningful day and as full a life as possible.

Three and more years have elapsed since i have arrived in Greystones, i do not have a meaningful day and as full a life as possible.

I have been denied all of this under the HSE decision to never consider my needs as i have stated them to be and that of my network of supporters under the Disability Act, the charter of patient rights and WHO also under the new directive of the social model as policy.

Page 25:

Explore with the person their preferences for community activity/or acessing day service off site.

·      The annual personal planning review shold seek out the person’s views and interests regarding community presence and participation; while going out tyo a day service or getting a volunteering role or even a job may be too demanding for some, the possibilities need to be explored for all residents.

In my view this very necessary inclusion has been made so that people have as meaningful and purposeful an existence as possible.

This should apply to all disabled people whether in their own homes or in NH settings, therefore i shall never be splitting my need as less than that of a disabled person under the care of the HSE in a NH situation, for i receive HSE care and am on a disability pension.

I have been denied my rights to any planning review, let alone a plan and not only never yearly but never even three or more !

Page 26:

·      As noted in the HSE comments above, enhancement packages can be applied for to facilitate some of these interests; while these may be difficult to obtain and were not highlighted as NHM;s information.  These packages need implementation planning and monitoring over time to ensure the supports are delivered in an accountable and skilled manner.

Here i will not chose to say i am different because i have my own home, i live on a basic disabilty state pension and cared for at insistance of HSE and yet no package has been put in place for me in this catchment area at all.  IN fact a package on the social model has been denied me and i do not even have a package yet alone an enhancement package!

Page 27:

·      Partnering with existing affordable and social housing schemes is necessary to the scale and variety of housing required for these individual.

I wish not to differentiate here for myself against those in NH.  I had wished to be independent, in the community but i am being denied the opportunity of a housing alternative to being in Greystones against my will and against my wish for i escaped a gun slinging social housing tenant and fled like a war victim to another war zone (HSE) greystones.

I need to be facilitated in an assessment of need to return home.  I mean HOME!

·      Provide timely access to assistive technology and customised equipment which may be different to that which needed by other NH residents.please note the operative wording ‘different to that which is needed by other NH residents, pertinent to my always saying my needs are not the same as others.

·      Identify funding streams, and HSE procedures for accessing assessment, provision of equipment, and training of use of, for example, aids to mobility, seating. My twin sister and i were never trained in the sue of our mobility aid, mine arrived in a box in the first instance and then with an OT and supplier, but only details on a standstill for all were pointed out.

·      Many people with disabilities, these are not just essential for best health and safety but are also essential for exercising the basic human rights of the individual, such as the right to Freedom of Movement, right to Freedom of Speech.

It is exceptionally nice to end my review of the review and find at the end the last paragraph being the ‘tour de force’

The BASIC human right of myself as an individual to Freedom of Movement has been denied me over a protracted period, this is stated in the Disablity act, WHO and Patient charter of rights.

The HSE of this catchment area Bray/Greystones have denied me this from the start.

Plenty of water today from a different Irish source, and its our birthday tomorrow

without further ado, i wish to wish my dear twin sister (relative) a wonderful birthday tomorrow, and i shall be celebrating it with you.  lets hope its a blast.

i guess you can say 'today was not one of my better days.'


I woke in diabolical depression, a combo of wondering what the hell life is about - anyway, and wondering do i really have to fight another day for medical needs to be met, something that is the question every Monday.

its a fact, in Ireland it seems relentless, the fighting for basics if sick and unwell and disabled.

reminded today through tears, that this all takes time, that is getting my health needs met and something sorted, takes time.

i say to the person involved 'surely to god three and a half years is enough time?'
there was a stop for consideration.
i think the hesitancy meant, she felt, yes its a while alright and a long time to get a few things sorted regarding health care needs met.

in a person aged 61yrs of age fast approaching 62yrs of age (tomorrow) three and a half years is a lifetime, wasted because of HSE, wasted through bullying, bitching, begging and torturous engagement.

three and a half years with a neurodegenerative disorder means i am worse now than three and a half years ago, so every day is a time for enjoyment, not bitching, begging and being shredded and tormented by health care officials.

We have had half suggestions 'yes we will'  then there is a pull back an inch 'well, who would if...' then again, 'this is a temporary wheelchair, yes.' followed by 'this is permanent'  regarding the 'yes we will,'  or 'yes we are considering'  that too has now translated into 'no we wont.'

we are talking here, bloody wheelchairs.

when also the same person reminds me that the HSE is broke and Wicklow has been  incredibly hard hit, i say well sure as eggs as eggs they drew on the empty well when finding the top barristers in the land to fight a case AGAINST me in the equality tribunal didn't they?

they have it when it is needed.
that is producing twenty files, all the hSE in wicklow and all that time, time and money for all that time.  spend on defending what i consider something they cannot defend because they have engaged in my mind, dirty practises, all along the way.

I bailed out as you know because i couldn't face it.
was i a coward then?
of course not.
but with FLAC even stating that the Equality Tribunal is anything but equal, you have to consider how can it ever be considered that when i couldn't afford a solicitor or barrister at all.
i was expected to fight against such a brutal organisation on peanuts when they had gold nuggets?

there is another case i have heard of, which is proving even more expensive by far.
it is causing a whooping lot of money both to do what they are attempting to do illegally and doing what they are doing at present, illegally.
strange to say, when they can want to prevent litigation, money is no object.

when they want to smother you too, money is no object.

the fact being Wicklow has over three years and more, done some weird things here.
giving OT's all across the county when we should have in place an OT less than five minutes away but to actually suit themselves, they gave me one fifty miles away and then another forty miles away, this is called MONEY, money badly spent on a whim.
another misspend is defective wheelchairs out to their clients.
hours and hours spent repairing the bloody things, hours of a Workman's time, and far more.
WASTE.

they do not have a one stop shop solution.
sort it at source and move on.
its an idea that the HSe have not grasped.
we sort this issue and then forget it.
to me it amounts to 'simples'  but no, never when we have the HSE involved.
its gyrations on a grand scale, for the like of me i cannot even conceive how they perceive it all to be cost effective.

when another HSE official drew me to the health centre in the name of physiotherapy, i was very depressed.
i told her i was, and it was obvious.
i gave her a bad time too, justifiably.
i had driven to the next town for twenty minute physiotherapy which literally consisted of her pressing a finger into each shoulder at the top and pressing down on the ball and socket joint.
then she turned my head left, and then right, then forward and then back.
followed by asking me to put my arms up and down and back and forth.
now onto the slab of a bench and can you remember what exercises i showed you last time.
i demonstrated for ten minutes and i got finally another print out and then it was out the door, that took all of twenty minutes.
that's mind boggling physiotherapy to me i have to say.
i asked her 'do you mean you got me to drive all this way for THAT!' take out the wheelchair, scoot along to the clinic twenty minutes of asking me did i remember exercises, which she could have asked me over the phone or indeed she could have said 'remember your exercises'  over the phone.

she wanted to question me about all my falls too.
yes well we have been there and done that.
i have been questioned.
the man who questioned apologised today he hasn't been to the house, he was in hospital.
well he has come here three times and done nothing and he has been my twins foot guy for all the time she has been here and she still hasn't got even one pair of shoes, for an inverted dystonic foot.

well the physio asked me 'what happened newcastle'  and i said oh we are still working on that, i thought she meant Newcastle in UK, but she meant Newcastle in wicklow.
its a psychiatric place.
i calmly said, 'if there was a health service i wouldn't need a shrink.'  and even then, i do not need a shrink.

lets say it was a bad day at the office/
i had received a letter from central command saying no they say we have wheelchairs that suit our needs but the woman mentioned above says, i am to expect another letter from her in the coming days.

jezus they screw you so they do.
why not send one letter.
it goes something like this:

"We would like to inform you that because it is your birthday tomorrow, we realised we had a lottery ticket we failed to cash.
in our good natured way we are VERY pleased to inform you that you are the lucky recipient of (wait for it) a proper powered wheelchair, a proper physiotherapy regime and a proper good fairy in the guise of a psychologist who will help you struggle forth with a neurodegenerative disorder.
he may or may not help you when next you are in a head to head with us!'

on another note, i think i would like to add this little nugget.
someone in my family said that i am not being invited to Christmas because alas the person who is having the Christmas celebrations only really wants the family.
HEY, relative!
relatively speaking....we ARE relatives.
just not married.
but we remain, relatives, of the blood kind, not of the extinct dinosaur kind.

In this blighted house: Natzification of right wing politics in Europe aga...

In this blighted house: Natzification of right wing politics in Europe aga...: The second world war showed us all dreadful things happen if the silence of the majority fail to speak out. We are alleged to have 'lear...

the European Union and how it plays out for the 'little people'

i do believe we have a Union initiative.
its called European disabled - WIPE-OUT.'

because 'disability' is a dirty word.
its something that happens others.

it doesn't happen you.
Yet it does.

it can
it could
and it most probably will - in some shape or form, and when it does its then you wish that you had kept your finger on the pulse for the next generation and the next.

harsh austerity at the level of the vulnerable throughout Europe will impact on you - later, if not doing so already.

that is why being an active political force on a community setting can activate good policy around disability.
otherwise others are making the decisions when you least know about what, you may become sick, disabled or ill and there is a woopsie.

if others make the policies, they are WELL making these policies, and they too forget this fact, they are making policies of cut-backs and butchery towards the sick when they cannot hope to comprehend these actions because the ability to emphasize with disability is little in an able bodied person.
with a few exceptions of course, most have to 'feel' sick in order to understand.

the separateness of this type with say, water charges is simple, money can be felt by ALL, be they poor, middle income brackets or for the socialists amongst us which is a political ideology of working with the least well off, but it cannot impact on your health that is sickness and disability and will only directly impact on a family as a unit as a unit of payment that could be used for other areas when a family is so badly stretched to the limits.

the energy then of political force can be heard, can be understood by all.
it effects all.

disability doesn't.

the one mistake in all this of course, you are allowing others to make policy now that may effect you or your family in years to come.
those affected now are not your family but someone Else's, you usually cannot feel their pain, unless of course its your family!

that is why the fumes of toxic gases herein are toxic yes, but only if you know about it.
like radon gas you do not feel it, until you are dead - so.

when people say that all are worn down by years of austerity.
but tell me how many of you who read this blog can comprehend that Ireland who has given more to the bail-out than any other nation within the whole EU has also the lowest poverty rates for the disabled in the whole of Europe.

with one of the highest cost of living, it provides for the sick and disabled so badly there is permanent economic distress.
you will have not only the stress of basic costs everyone incurs but you have the bonus points of disability.
the charges many will never face because they may never be disabled.

when you have a health service that is  non functioning, as in dysfunctional and corrupt, which is disconnected and obscene which provides Nada to the sick and disabled the situation of basics as in living in a minor way as opposed to a normal way are hardly achievable.

disabled people in Ireland, unsupported by the Irish people have gone into a hole of apathy and despair.
we have done so because the fight is endless, draining and seems to produce nothing at the end of it.

something tells me i cannot do this.
give up.
i cannot sort of just forget the wrongs occurring in Irish society in the general domain of disability.
i cannot be bought off by large groups of people out of the poverty trap and so shut mouth and never be heard again.
People are NOT as vocal now within the disability groups because the voice isn't allowed.
In Irish society and the health services, you cannot be heard as a person with a disability.

Here is the way it goes OK.

1.  you request a better, functional wheelchair, one that does not run away with you or hit walls without wheels.
2.  you tell people what happened, via the media and through links with the Department of health.
3.  you go on radio.
4.  you sit out side dail in pink hats.

what you will never see is the despair all this engenders because of the very vicious approach to you as an individual.

the HSE dig very deep to uphold the collective Will to destroy that voice in you so that they can silence you and be shut of you and keep you at a certain distance.

three years on you are getting no where fast but some believe you are telling the story for many therefore it will sink in somewhere that Irish health care is poor, creates more pain then it helps lessen and therefore its all worthwhile.

but action is short on the ground right now.
we have a situation where the HSE are playing the game, 'do not give in to those feckers, the Kennedy twins'

while you are telling the media and the department of health the reality on the ground they are pushing pens to write vile letters to you personally and all the while responding to the accusations we present with rather a flourish.

'they have been expertly assessed as having wheelchairs that suit their needs'.
this seem to work on some levels.
but half are not fooled simply because the HSE is known for its deviousness and it doesn't go unnoticed how dysfunctional the HSE is.
the problem is they are quite plausible.

Powered wheelchairs can be described as:

Indoor use only

• For indoor use
• Small turning circle
• Could be used on a level patio area or in a small, level garden
• Short distance range

I put the above in here, because this is the type that ran away with me, its mentioned above on the AssistIreland.ie site and even a picture of MINE can be seen there, it was never meant to be outdoors enjoying a country smooth pathway because its not designed for this.  its of very basic limited use.
They do not tell you that the expert assessments for the right equipment was the equipment that went into a wall losing a wheel when the wheels were put on by the wrong bolts and was 11yrs old!

What is a Wheelchair Seating Assessment?

Wheelchair seating and mobility is a technical and specialized area of Occupational Therapy. The therapist must have a good understanding of not only the physical and functional needs of their client but also of the current technology available in order to choose the equipment that is best suited to your needs.

Above found on Therapy plus ca 

they will leave that bit out.
so too their expert assessment will never included where it was conducted, how it was done and what small nuggets of useful information they care to leave out, eg we stuffed a roll of her scarf under her bottom and saw that once we did that she shifted more or less upright, for the ten minutes remaining of the assessment.

they will not tell you that the wheelchair they provide is actually an indoor lightweight not meant to be driven outdoors on awful terrain or even not so awful otherwise it will run away with you.

TURNING AND USING ON A GRADIENT GUIDELINES

• Avoid sharp turns at high speed as this could result in the powerchair tipping over. This is especially relevant when turning on a gradient.

• The powerchair has been designed for use on gradients up to 1 in 6 (10%). However, other factors such as the surface of the gradient or the attributes of the user can vary this figure. If you are in any doubt about going up or down a gradient please find an alternative route.

• Please slow down when driving on gradients.

This is found in the manual for my wheelchair.  well, its online but i have no copy of any manual.

the next thing i am expecting is not to be on a losing flyaway but being tipped out of the thing and incurring an injury.

they will not tell you either that they have heard from the disabled person in utter anguish that the person reports suicidal ideation and has actually attempted suicide as a vulnerable young adult and very nearly succeeded on more than one occasion.

they do not even see that at 62 with a progressive neurodegenerative disorder that my needs are not like others, that i do actually need a better wheelchair.

the most worrying factor being...most of the people dealing with wheelchairs, don't seem to understand the item, they do not seem to understand the different kinds, and i mean this because we have tested this knowledge and they have been unaware.
they do not know how to power one up or how to turn one on.
these are our Occupational therapists, they should even know that basic, but they do not.

a letter was received today.
decision making time by the new disability manager of the area HSE she AB tells me that a wheelchair that suits my needs has been provided.

period.
waiting news of Newcastle and further reports.
well they did the assessments without any reports whatsoever you know.  they asked for none and made vital decisions without even knowing what was wrong with us.

that's how good they are.
this is how dreadful it gets.

but you who are not disabled at present, cuts are being made every single budget and by the time you or your loved one becomes disabled, you may be a bit weepy because by then they will take your disabled or yourself, line you to the therapeutic line - and shoot you dead.

they did that before and that's where its heading.
i am dead serious.

information station ---wagon!

well.
more information on the wheelchair situation here.
there isn't much to report.
still not a decent wheelchair in sight.

a phone call came to ask me did i want a repair man to come and look at the new wheelchair, that is for the one that ran away.

well, i don't think it needs repairs.
there isn't anything wrong with it, because its been built to do little and when it was doing little it was fine - that is, it didn't run no place on the flat floor of a hospital recently.
it didn't run no place either when i had to use it in the kitchen.

it hasn't run away since, but i have been afraid to use it for more than its able, or tax it more than one should.
like a sick child or adult, you do not strain the item.
well my friends, that's a wheelchair we are talking about.
the stress and strain is enormous for the human!

the OT came today...the local one.
the nurse came to day, the local one.

the OT asked again, 'will i send someone to look at it?' and 'tell me what happened'
well i told them already what happened.
i told them again!  its a crap wheelchair.

the nurse said it best to get it checked out we do not want an accident!
that is a tad bit rich considering the HSE gave me a wheelchair that lost a wheel causing me and whats left bolt  into a wall in July 2013.
so they are worried about accidents!

here is another.  YOu may like this as well...

'i am worried about all the falls you are having.'
said the nice nurse (she is nice).
'Yes, nurse i am too'.
but i tell you for sure most of the falls i am having is when i am too tired and i shouldn't be walking.
i should be in a decent wheelchair.
a proper one.

'seriously, i am worried about all the falls you are having.'
well i am serious too.

i then told her about a possible 'site accident'
we have had water coming down in buckets, (god  bottle it you say), and i had to avoid a mighty big puddle down by the harbour.
i had to go up on a grass prom and if the wheelchair didn't make it i was out of it and crack onto pavement, concrete like.

I have EXPLAINED all this before.

the bloody wheelchair given to me is the cheapest you can get, its a stock chair and neither does it 'fit' for a woman of 5.6.2in, yep measured to that height today, i have lost half an inch friends!  its far too small for a large lady.

if you read on any forum about wheelchairs, don't go there, do not go and buy the Energi cos mate, it isnt suitable for any other surfaces than a nursing home, they say.
the way the HSE are treating me i wont be in a nursing home but a mental asylum.

i explained what happened two weeks ago with the cheap wheelchair.
i explained why.
there are a few grades of wheelchair and it runs like this (excuse the pun).

Indoor chair - this is for indoors ONLY (the one i have).
outdoor chair - this is for outdoors ONLY.
indoor/outdoor chair, used indoor but with capabilities to be used outdoors.
Outdoor/indoor - outdoor with capabilities for indoor use.

now you cannot use a chair that is ONLY for indoors - outdoors.
they are not built for it.
they are light (no suspension for the bad roads) they do not have balast, so they can run away with you and tip to the side with you in it, (i do not wear a crash helmet.)

my twin sister and i are still able to go out.
yes, we do not hibernate, we do not stay behind closed doors, we are not hermits or reclusive.
we go OUT, a lot, because we need to and like to.
we need OUTDOOR chairs.

and far more besides.
(but thats all another days story).

the main one being, i have still this crap wheelchair.
and i call this torture and it has to be regarded as a form of torture under the 'human rights' legislation.

the HSE is driving us nuts, and causing us pain and driving us down paths and into orange leaves, and muck.  (and walls).

oh by the way, the top brass (our government departments) who inquire after i weep down the phone to them are told certain things.

the twins have had expert seating and wheelchair assessments and they have the suitable wheelchair for their needs.
yes, very expert to do this assessment with not a wheelchair in sight and also the most scientific and sophisticated measurement taken being having a scarf rolled up and shoved under my bottom to shift me from keeling to the left to more or less straight, until i get tired of course and i will keel to the left.
that will not take long.

they are told these assessments were professional yet they have been done with no reference to medical consultants analysis of what is wrong with us, at all.

a year ago my twin took a leap of faith.
she no longer has Parkinson's disease, so the HSE say in this expert seating/wheelchair assessment, you know what then,  she has prayed and a miracle occurred, because suddenly my twin has gone from having parkinson's to being pre-parkinsons disease, now that is a miracle by any stretch of the imagination.

here is another great gem of an assessment.
'she claims she is deaf and uses hearing aids.  there was no evidence of hearing impairment'
oooh now thats a great assessment.

we are back from a top UK hospital and we were both tested again by a consultant there.
a proper consultant.
we are both Profoundly deaf in one ear and severely deafened in the other, and the consultant was aghast to see that our audiogram was identical.
she has never come across this before.

so margaret my twin has effectively seen either a ghost, a saint, a witch or nada cos she no longer has deafness of any kind and she no longer has parkinson's disease of any kind.
Funnily when it suited them a reason given to why i needed a 'wetroom' and the twin didnt was because she has parkinsons disease and i have a neurodegenerative disorder.'  well i best inform the Health service, that parkinsons disease is a neurodegenerative disorder!

what else...
well this expert assessment forgot, yes forgot to tick some very relevant boxes on the questionaire.
this is a mystery not a miracle.
because if answered they would have given evidence of the whys and wherefores, the better wheelchairs are needed.

so this expert seating/wheelchair assessment has been the response of the HSE to all enquiries by the Department of Health.

economical with the truth?  yes, not pre-nothing, just post parkinson's disease diagnosis.

i could write a book on all this.

so they tell me today they want to send a repair man and you better have it done cos we 'are worried'
well, you should be on that score for sure, you should be worried.

some bright spark told me i shouldn't go out in it if it does this, run away on you.
well why is it that i cannot go out in the community like everyone else?
this bright spark said, you know you have a disability you just cannot use this machine in those places if its dangerous.
hey, its not them places that are dangerous, its the bloody wheelchair.
people almost climb mountains in wheelchairs.
if i cannot use a simple path in a wheelchair, jez what can i do - become that famous hermit and recluse when i want to be OUT there where everyone dares to go!

'Ann' says the nurse,  'I will come back next week and discuss the falling because you know i AM worried about this.'
'NURSE!  so am I!  can you give me a wheelchair?'

i am on the left with slippers, note the way i do lean to the left, note how my legs are
slipping away and note the size of my legs.
you have to if you are using/chosing a powered chair.

evidence has it when you become too tired and walk too much when diseased what happens - you fall down.
crack i have hit the deck down.

that is what happens, its not rocket science, its even more scientific than shoving a rolled up sausage under the bottom of a sick lady.

what is the point of a health care system

please please tell me anyone who can...what is the reason for having a 'health care system' when its one that is from HELL and doesn't care?

what is the point of being sick and disabled and being intelligent enough to know how best your needs could be served if a health care system will not listen and certainly will never believe you, cos they know best.

tell me who is sitting in a wheelchair in the first place?
who is taking the medication?
who is being denied a full quality of life due to be so unwell all the time.
who is deaf and cannot hear a bloody thing unless from close range and even then with difficulty.

how can a health official say no obvious signs of deafness at an assessment when a clinical consultant does very sophisticated testing which shows that you have profound/severe hearing loss, so obviously i would trust the consultant on this one.
not a person in the village health centre who hears you speak from a couple of yards and sees you answer her questions so says, well no obvious signs of deafness but she (the client) states she uses hearing aids!
we do!

how would they like to be as deaf as a door post, never hear the sound of waves, birds, TV (neither bother anymore with the sound we read the subtitles and only watch TV programmes with them.)

can they too, feel the pain we in and are they wearing our morphine patches.
are they taking three pain meds a day.

are they wearing clapped out (HSE) shoes which cause such danger to me personally that i have incurred two snapped shoulder muscles, complete tears and now one Achilles tendon from going over on my ankles in shoes that are supposed to be orthotic supportive!

i have sustained serious injury and the most diabolical pain due to the provision of inappropriate footwear by the HSE.
i could have been killed going into a wall when the wheelchair i was in lost a wheel.

and they are the ones who are the experts?

can they be so when they give items that go into walls and down paths but end in the muck and leaves?
are they when the items cause more pain than ease the pain.
causes injury to a persons body and they are a health care provider (cutting costs so cutting corners)

i am truly sick of it all.
i charge this state with neglect of the least able they are instructed to support and act for, as citizens of this state, this is what i gave them a vote and mandate to do - to honor all citizens of Ireland be they sick or otherwise.
i charge this state for causing such neglect as to cause grievous bodily harm and i mean it, for what more could you do to a person but make all limbs of that person incapable of doing things it was doing before being provided with dodgy supportive aids.
how grievous is it, that i can no longer lift a chihuahua without severe pain from the floor surface to a sofa?
tell me, causing that kind of harm is a crime and nothing short of a crime.
tell me is causing such harm that i can no longer turn in bed using arms that are snapped at the top.
causing such harm i cannot get out of bed by using these arms without excruciating pain.

what more i charge the state with neglect by providing NO physiotherapy for me since the accident in MARCH when i fell and snapped the tendons in my shoulders.

this isn't health care, this is a slow, torturous end, on all fronts a slow torturous end and not an end in sight for it getting that much better either.

its time readers to show that you at least care, here are the triple whammy for you and i beg you to show such solidarity that it will make a difference to my life and that of my identical twin.

The petition is really important and could use our help. Click here to find out more and sign:
http://www.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?mFFiTcb

http://youtu.be/zwLgHc8uBOA

awnyah todaysay: more damage to limbs because of neglectful HSE

i am not a happy woman, anger rages with the deficient HSE (Health Service Ireland)awnyah todaysay: more damage to limbs because of neglectful HSE: image taken in 2010 - when i had the major trouble attempting to get away from a child who uses a gun against me. also be aware that my tw...

more damage to limbs because of neglectful HSE

image taken in 2010 - when i had the major
trouble attempting to get away from
a child who uses a gun against me.
also be aware that my two front teeth were
pulled by HSE and never replace for two years.
can you imagine going around as a woman with no teeth provided for the gaps?
we have the same neglect in 2014
I am sick of it all

yes, i have incurred another injury.
this time i have partially ripped an achilles tendon, due to three falls in ten days.

now i was wearing the so called special shoes for disability provided by hse but they are useless, as can be seen.  we had three occassions where i went over my ankle and hit the deck.

the first time meant a visit to A'E, it wasnt broken.
the second time i didnt go to A'E and now when i could not put foot to ground i have spent two afternoons in A'E where i was told it was torn and to return to the fracture clinic on monday.

i fell in march in the garden and sustained two torn, complete, muscles to the shoulders.
since then i have seen an orthopaedic surgeon privately and he told me he cannot mend due to danger, and seriousness of it with my health.

therefore i shall never be the same again.
this fall causing this damage occurred due on going fight with HSE for them to supply me with proper shoes for a person with deformed feet, pes cavis and muscle weakness, when i failed initially look at what happens.

the fall over the past few days now will have me immobile again.
if its not done directly by lack of provision of a wheelchair it wil be done by accidents.

we had also as i have said, dodgy stuff with regard to the wheelchair provisions.

i am sick of it and the amount of pain i am now in.
its horrendous.
the muscles are torn since march and no one is assisting me, i believe i should be having physio, well where is it?

this is called neglect, lack of care and also a disregard for human safety and against all human rights and disabled persons rights under the Disability Act 2005.
surely to god i count?
surely to god health care provision is not to cause harm but to prevent it!

i charge the HSE with wanton distruction of my life.
I charge the HSE with neglect
I charge the HSE with dangerous behaviours and appliances leading to injury which can never be repaired.
i charge the hSE with causing grievious bodily harm when it is not in their remit to do so.

they should be strung up.
i am so injured now i cannot walk at all and i cannot even lift my chihuahuas.
but having to engage as normally as i can i am increasing the pain levels by ordinary living.

this is caused by the neglect.

In this blighted house: When you wake every morning crying.

i link you into what i have deemed a very upsetting blog written by my dear twin sister, every word is true, everything here is from the heart and soul of a good woman being, abused.  abused by the HSE after all she did for society and she was a giver.

i hate to see this happening to one i love dearly.



In this blighted house: When you wake every morning crying.: I didn't think it would be like this!  Ann, my twin in front, I coming up the rear, saying No to water charges, but NO also to all the a...

Rejection out of hand by the HSE of Ireland services to two wonderful women

it is 3.52am and i have been tossing around in my bed unable to sleep from shear anger and pain.  i am hurt to the core knowing what is happening here - for two Irish Women who never sherked their role of care, their  role of responsibility towards the least able.

let me remind all of who we are.
firstly my twin sister left these shores at a young age as most young people are doing again today.

she chose a life in social care and became one of the first women to recognise through her work that disabled people were being abused in institutions.
 disabled people were being sexually abused behind the doors of so many places where no one even entered or to people no one really cared enough about - to protect.

after becoming an internationally renown lecturer in the care and training of those who work for the disabled so that the disabled are considered part of society and are treated well and with social responsibility, she received the acclaimed Emma Humphries Memorial Prize in the UK for her contribution to caring for women,  her work in Clerical sexual abuse of women which, through  setting up of organisations where women abused could gather for mutual support she made it known that clerical sexual abuse of vulnerable adults was not to be tolerated and such women should be treated equally as that of clerical sexual abuse of minors and she also worked tirelessly to get justice for these women.

with the plastic bag and gown, she reflects on her fortune, coming away from her Phd graduaton ceremony.  Justly proud after leaving Ireland without even her Leaving cert, a primary degree or secondary degree.

margaret had good tutors at
the university, being profoundly/
severely deaf she needed them

this area of work she studied relentlessly and in her doctoral thesis she argued why the church, the state and other bodies should consider for support and care the women sexually abused by the clerics of the day, in their role as care givers and state bodies who had a political and ethical role to do just that - care.

it was also one of my happiest days, 2008, i rose out of my wheelchair to stand close the
person i adored and admired all the work
she had done over the years.
(doctoral thesis on clerical abuse of adult women)

Mary Raftery admonished the Irish for not recognising the work of this wonderful person  here, no one knew that she had won the Emma Humphries Memorial Prize and no one acknowledged that such an Irish woman of such stature existed even.

None the less the HSE 'bought' her in, to train up those who care for intellectually disabled in the west of Ireland and elsewhere, with the brothers of charity and other state funded bodies.

she was known as a whistleblower who couldnt keep her lips sealed when she heard of the mismanagement and abuse of intellectually disabled here in Ireland and she had been bought in to address these issues through training Irish HSE personal to do the exact opposite, care.
she immediately lost her job and another organisation did not retain her excellence in the field and told her she was not needed further.

RTE made a documentary of my twin sister, during a series called  'the spirit moves'  and called it "the Letter and the Law."  it is still on an RTE podcast and can still be viewed online.

given the work my twin sister chose to do, on her return to Ireland as a sick and disabled woman with the shoe on the other foot we see again what has happened to her - abject neglect by her own country and its official carers, the state body, the HSE.
Neglect.  Let it be known that the state, the HSE has turned its back on one of its most famous women who did more good for others than they themselves could find to acknowledge firstly after her awards in the UK and secondly as a disabled woman here, living out her days where she was born as a citizen of this 'glorious' state.

Margaret began her work in the UK comparatively late in life, her career therefore was short but good and productive as i have stated above.
she was not so careful with her finance, simply because she gave most of it away in her work with the women she wanted to protect and help.
so she returned not remembering in her working productive days that money may be important to herself if anything should happen her.
this is her one big failing,  her lack of understanding of her own self care.

but then NOW, she is sick with a rare neurodegenerative disorder, back in Ireland.

why is it then that the Irish cannot protect her and give her that care she extended to the Irish when she could do so herself?  A lifetime of care for the least able, she is now just that, an elder who has succumbed to a rare condition of muscle wasting, parkinsons disease and far more.

she came home to neglect.
she receives no physiotherapy for her body structure and muscle wasting.
she receives no specialised shoes for a severely inverted dystonic foot, fixed as turning inwards making her have to walk on the very edge and not on the flat of her foot on legs already weakened through myopathy muscle wasting,  giving her excruciating pain, and has done for YEARS, again neglected by lack of provision of suitable foot wear, by the state health care providers, the HSE.

she receives no support whatsoever from either a social worker or from a psychological supporter which may help her in her need when she is now declining through very severe degeneration, she is left, neglected by the Irish.

she came home because she loved Ireland.
she came home to be amongst her own and amongst her family.
she had left  these shores at seventeen.
what a shame and what a disappointment and how she regrets her move.
she is shocked, that no one seems to care for her at all, neither her own family nor the HSE who has actually a caring role to play and are being in her professional eyes, neglectful of that role, which she would have told them in her training days when she was bought in to train them up in how to do things well when dealing with disabled people.  Irony personified.

as we see she and i have together been fighting for appropiate wheelchairs for our end of life quality of life.
three and a half years later we still remain in dangerous appliances for very sick people.

Myself, i believe too i am owed care from the STATE.
unlike my twin i was only a small player in a caring capacity and life.
unable to work most of my life i was drawn quickly into the psychiatric system because i had been abused by a cleric and there was no other system then in the 70's but when i did get out, i never looked back.

i too trained up to bring best practise to another group of people, the elderly.
i did a post graduate diploma in Arts & Empowerment so that i could bring some skills to the nursing homes i was visiting weekly and help them there to feel empowered and less depressed, something hard to do when they knew one thing only - they had been left to rot and to die, forgotten elderly of the Irish people.

I too receive nothing for my days of volunteering care, volunteering  tocreate a safe environment for the elderly to speak and to paint and to create for themselves a small piece of joy in an otherwise dreary and useless life or so they had felt anyway.

I too receive nothing and we fight too hard for a basic standard of care as laid down under the charter of care, the disability act and the rights of the disabled laid down by the UNited nations and the World Health Organisations

we are being neglected in our country of Ireland, against all best practise as laid down by the above organisations.

the two of us in 2012
a time for reflecting by a lack
i make a composite image
for my neice abroad

we are examples of how the state treat the disabled of ireland - they don't.
they do not care and they do not provide.
we are the 'useless eaters' as Hitler referred to his disabled, and burned down in the gas holes of the gas chambers for which we all now show a rightful outpouring of shock and horror decades later.

exhaused after being shot at in a social
housing unit, i take a break away and
bring my 'Irish Therapy Dog'
as you can see, my pet is doing her job on
me!

no shock and horror at the way the Irish state treat its own disabled.
can you by making it known to the Irish Health Service Executive and Dail Eireann that the Kennedy twins deserve far better then they are receiving now after their lives of service to the least able in society?

lying in a cot, my coat and gloves on
the glare of light hurts.
i am recovering after having all my front
teeth extracted after disease, undetected
in Ireland, but recognised in UK.
(primary sjogrens syndrome)

can you effect change for at least us, and show that you will not accept neglect of the sick and disabled.

i enjoyed bringing my chihuahua to
nursing homes to cheer the ladies
here she is in a mobility scooter i used
it was taken from me by the HSE and
they then gave me an 11yr old
banger which lost a wheel and i went into a wall
on my way to the neurologist.  Shame on
the HSE

a lady who is nearly
blind, gets comfort
from maggie
this was the first
smile i had seen
from her

can you do this as your token of outpouring of anger for what Ireland is doing to its own all across the land.

can you do this so that we, as elders now can live a less painful existence in our own country with a potentially life shortening disorder which is so rare there isn't







 even one consultant in ireland for this condition and there is no cure and no treatment.
all the more reason to give us the services of wheelchairs, special shoes, for both of us with our deformed feet, appliances such as suitable beds, and give us services such as ongoing physiotherapy and an input of psychology so that we can cope without the support of others that most do have, their family.

we are alone in all of this.
but you are there and can show you care, please do.
sorry this is so long and waffly.  i am angry and its early morning so not the best in editing terms.
I hope your night was a better one than mine has been