Pope Francis thanks Irish teenager for supporting mother

Pope Francis thanks Irish teenager for supporting mother



nice but easy to do.  Where are the BIG gestures.

Political 'abuse' of disabled people - an email to my politicians

On 25th July 2014 I winged this email to my local County Councillors, a TD and a few other 'key' people. NOT ONE, not ONE person replied! 

 

I am shocked and appalled. I know some are away, but others are not. Maybe next week...wait & see.

 

 

 

Dear All,

As you know I have been engaged at the 'coal-face' more than I'd like to with the HSE over services in the community.

 

and being an intelligent woman, former nurse and social worker, now living with a rare neuro-muscular disorder more than most, I see the flaws.

I am not 'sitting back' and doing nothing. that's not my 'style', much to the annoyance of service providers. for I can attest they do not LIKE service users who are empowered, intelligent and point out injustice and unfairness. there is, of course a cost to my position.

Service providers become bullying and then write and say much about me - usually negative  - to destroy my 'reputation', my 'credibility'.  Those who 'complain too much' (whatever that means in a context of begging for a proper support service), are quickly in Co Wicklow labelled a 'serial complainer'. that eases the conscience of the service provider.  Blame the client is better than blaming yourself, or the 'powers that be'. It's simply...easier.

Doing this service providers seek to stem the vision of reality. For REALITY is what I place before them. A person who NEEDS a service or services, which allegedly  cannot be provided due to 'no money' is a person who makes the professional feel impotent, worthless and useless. To be reminded by the client that your job is almost, no more than a token gesture rather than 'professional' and all that means is soul destroying.

The picture, the stark picture, of sick, disabled and elderly lives ruined by service providers who are aggressive, argumentative, in denial, scapegoating the client and rather than being honest and caring they become vicious and attacking, this is my reality, and also the reality of people I know and people I love, like my twin sister, who has this same disease and more! and who has more cruelly been abused by service providers. Yes, that's the word I will use.

This is NOT professional care. This is bullying of vulnerable clients. I sometimes see where my service providers are coming from. Tired and stressed that they cannot provide a service, they attack the client for asking.  It's called 'scapegoating.  But it cannot be condoned. It cannot be allowed to continue.

I ponder on whether or not the 'politicians' are aware that, in reality, there are NO public health services to speak of. We have NO community service. NADA, does not exist.

Let me tell you what MY position is. just ONE person in Greystones, in Co Wicklow....

I live off benefits and have virtually no savings. I may be intelligent, middle-class, professional with 'Dr' in front of my name but that does not mean I have money! I don't. However written on my twins files (obtained under FOI) there is a statement "we believe she has independent means" (WHAT!??? - my sister has no money at ALL). where this view comes from is a mystery. But lies also serve to deal with the guilt the service providers feel. Or if it is NOT guilt, it is evil.

I need basic stuff...

Shoes; due to my neurological disorder my left foot turns over. Think walking on your ankle bone! I cannot put my foot flat on the ground due to Dystonia (muscle contractures). I need special shoes.  this morning my podiatrist told me special insoles - second best and have not, so far, worked (not shoes - which I need) have NOT been sanctioned by the HSE. I must walk on my ankle bone, I must SUFFER the pain of this, the restriction of this, the inability to walk!

Wheelchair - I have muscle myopathy - Muscle wasting similar to muscular dystrophy ....yes, serious stuff. HSE refuses, refuses to give either my twin or I a suitable powered wheelchair.  Oh we have been 'assessed' by SKILLED professionals as not needing 'high-end' powered wheelchairs.  there is no such thing as a 'high-end' wheelchair. this is a wheelchair with additional features that suit better certain clients with certain conditions. calling it 'high-end' suggests I am asking for a Royals Royce when I allegedly 'only' need a chair on wheels. !!   I am not ALLOWED say why my 'chair-on-wheels' is totally unsuitable. Or why I need a better powered wheelchair. 

bed - I have 5 degenerative lumber spinal bones. excruciatingly painful.  a hospital bed has been supplied, but still I do NOT sleep past 3am. The nurse promised about three months ago to supply a mattress 'topper'. It has not arrived. My twin has also severe 'bed' issues, not being addressed. also due to pain.

Now pain is horrible . no-one can bear it...we all try to avoid it, alleviate it. The HSE prefers to ignore it even exists!

Physiotherapy: I have a lovely physio. However physio now consists of a visit with sheets of paper with exercises pictured on them . this is your physio session. She tells you how to do exercises but does NOT touch your body, even if your muscles are in a dystonic mess (spasms) she will not manipulate these knots to relieve the pain.

So you stick a morphine patch on become addicted, and feel sleepy dead all day.

There is no transport service to hospital so my approx. 3 visits per month to consultants costs 300e for taxi's.

My prescription charges are large.

my visits to GP frequent (luckily I have a medical card)

So I'm left here at home with a bed I can't sleep in, a wheelchair I can't use (it crucifies my back ), shoes I can't walk in and no service to get me to hospitals.

Then the service providers wonder why I pick up the phone and scream in frustration and pain, tiredness and despair. Then I'm called 'aggressive' and the phone goes down. A neat response which completely avoids responsibility and 'scapegoats' - yet again. whichever way we look THEY (HSE) 'GET YOU!' .

Ditto for my twin sister...who as some of you know has been 'targeted' for even worse treatment by the HSE due to her upset and distress (which she also expresses loudly) .

It seems to me that POLITICALLY clients/service users are Expected to 'not complain'.  After all the whole country is in 'austerity mode' and we should 'understand' the countries broke!  We should buckle down in 'war' mode. Accept the deprivation, accept the hardships. accept your life ebbing away in misery and pain.

No the country is NOT broke. Nor are we in a war!

the country finds money for e.g. the mother and baby enquiry, the Palastinine relief effort, for upgrading committee rooms, for hikes in salaries in Government or perks to high office holders.

I am not saying don't do inquires into mother & baby homes, no that is needed, so too relief for Palestine...no, I'd be the first to support these decisions.  But I want to ask you all...

WHY do sick, disabled and poor and elderly have to suffer the political abuse of no HSE community services?  For this is what it is! 

I've spent all my professional career in the child protection field. we social workers called to account parents who failed to care for their children. There were strict sanctions, strict care proceedings, law was available, jail too.

but the corporate 'parent', this government, can abuse the most vulnerable in this state and just walk away as if it doesn't care, we don't matter.

Enough is enough. 

I say to all you politicians, those who abuse us daily, you are causing profound suffering, profound pain, profound depression.

the priorities are all in the wrong places.  A HEALTHY nation is a nation that can WORK to repair the brokenness. But we are like the soldiers on the River Kwai, beaten daily, starving, and dying from a regime of abuse towards us.

on OUR backs of deprivation and hardship you intend to 'rescue' Ireland for the elite. Medical cards for under 6 years old - for all - regardless of income,  means WE suffer.

I am not a politician , I'd hate to be one, except perhaps if I could be an ethical compassionate one. But I say this....

this country under THIS government has created more suffering for underprivileged people than at any time in the recent past.

I don't want your excuses e,g. it's all FF 's fault, it's the Bankers fault, it's the EU 's fault. I want our politicians to face the reality of sick, disabled and elderly people suffering in a community which has NO PUBLIC SERVICES and where professionals are teetering on brinks of nervous breakdowns and lashing their very clients in THEIR despair!

You have created an apocalypse ...annihilation...suffering beyond measure.

I am angry,  not just for me, not just for my twin...I am angry that so many in Ireland suffer because of choices made by right wing politicians who frankly, don't care.

I doubt this missive will impact anyone's soul - except the few here who know it's not aimed at you!  You'll know who you are.

But writing it is a damn sight better than doing nothing! 

Yours Sincerely

 

Margaret Kennedy

 

The wheelchair given by HSE to Ann Kennedy was 11 years old. it now sits in her hallway - dead as a dodo. Finally it hit the dust. She was told (via her twin) that a replacement would be set 'within the next few days' she's STILL waiting!

We have missed several events because Ann has no powered wheelchair.

 

'Outwith' the Church - Sunday Morning

It's Sunday...the traditional 'day of rest', the 'Church' day for whatever Christian Church you belong to. I feel the 'outwith' status of Church I now inhabit. The threshold of Church I cannot now pass for a myriad of reasons, none essentially to do with God or Jesus with whom I have no argument.

I searched the internet this morning to find a place I could be...to no avail. I don't want the traditional, nor the wildly ultra 'other' which often irritates me too.

There has to be 'a place'. it's finding it that's proving difficult. It has to be feminist...Christian...but not too 'alternative'.

I like to challenge, I'm not a subservient woman, bowed down by years of orthodoxy. I had my 'traditional' era somewhere between age 24 - 30years. Thereafter I diverged on seeing the mirage of a black buttoned up cassock walk into my Church in Hackney straight from Rome. He only opened his mouth 5 minutes when I knew my time was up. it was a blessing in actual fact. I found my voice and strength and 'womanhood' never seemed so urgent to reclaim spiritually.

I was 'tainted' woman, not of the flesh, but of the spirit. that spirit of misogyny lurked disguised as 'truth' somewhere deep inside and I did not like it. I spent years 'vomiting' up this spiritual bile! and it took years to understand...and then I was free and 'outwith'.

But what is freedom if it means 'on one's own'. the yearning for spiritual connection is deep, unfilled and lonely. The days with my fellow travellers, CSSA, were the closest to my Nirvana, my fulfilment, my dream of a 'Spirituality of Vomiting' - the stuff we were MADE to swallow.

But we filled that void with love, humanity, vulnerability, sharing, crying and praying in authentic 'oneness' with a God of understanding. and the vomiting ceased.

The icons of our 'theology'; doves, leaves of trees, Teardrops, brick walls, coloured ribbons held the meaning of our pain and suffering and we for short periods were NOT alone. and in that space Jesus came, light-footed, gently, softly, carefully and tenderly. He did not bulldoze minds and hearts and spirits with dogma, certainty and masculinity. No, he joined, but did not order, force or make us into some mould that spoke 'Church'. A Church proscribed by maleness and power and preaching and domination.

He came as a spirit in each of us, wandering in the dessert, crying in the wilderness, seeking, water and refreshment. And he found us, and he loved us. and we were at the well, being nourished. Together.

and we were right, we were perfect in his eyes. He, with US,  filled our liturgies with healing and with light. and we left more whole, more WOMAN, stronger in our self-belief.

We did this...we women, gathered around the hearth and DID this TOGETHER.

Whether Jesus is male or not, was immaterial. His likeness seemed female. Motherly, warm, tender and silent and waiting.

The Wall Hanging: 'A Visible sign of our presence' - Christian survivors of Sexual Abuse.

and this I miss...I miss those WOMEN.  I miss that SPACE.  I miss that PLACE.  It was not 'Church'...it was MORE than Church.

I am 'outwith' , and I feel lonely. 

can I find that place again...?

Land of the Free? Ireland's inertia

Since coming to Ireland I've tried to utilise my skills and experience as best I can. Every effort has either been ignored or abused.

I try to do a survey of disabled, elderly and sick people's lives in Co Wicklow, only 10 stepped forward. Things are not good in Co Wicklow regarding community supports but people WILL NOT react to this deprivation. Say nothing in case you loose the little you get. I know the feeling but sitting there 'taking it' won't improve the situation. But challenging the status quo is not 'in the blood' of disabled people. One overnight demo to save Personal assistants -PA's (for themselves) did not save PA's for ALL disabled people. One big disability march did not equal a revolution! And there has been none since despite government cuts continuing to decimate disabled people's lives.

I start a group DAG:T 'Disability Action Greystones: Together' in my local town, thinking 'just do something small', for disabled and non-disabled people to come 'together' to 'make an inclusive community'. There are 4 stalwarts on the group and work hard, there were a few others but they left. But every time I post on the Greystones forum about a DAG:T issue  I'm abused by trolls and no one defends me. The moderator just says "free speech" . The seriously horrible disablist remarks such as I'm not disabled and don't need a wheelchair because "I've seen her walk" is allowed.

Yesterday it was almost asserted I didn't need to use taxi's for disabled wheelchair users simply when I asked where in Greystones these taxi's were? I was attempting to draft a wee flyer of wheelchair accessible taxi's. I had to delete the post.

Such abuse hurts because it's from the very people I meet in MY CHOSEN TOWN to live in. This is a close community. Everyone knows everyone. I am appalled not just at the personal abuse but at the acceptance of it. I really, really intended to generate a well-spring of 'inclusiveness' here in a sea side town not easy for wheelchair users. But I am not the only one targeted. Other disabilist comments are made about other disabled people without any sanction. even if you request the moderator's to intervene. I can only conclude that DAG:T is very much needed but it's going to be an uphill struggle. and political disability activism is not favoured, only the charity model! And I despair of this 'closed' town who know nothing of Disability except a charity model.


I then switched to my other area of concern...clergy sexual abuse and asked if people would like to contribute to a wall -hanging similar to one done by survivors in the UK in 1990's. I thought it'd be an 'easy' way to do something of value and become a 'visible sign of our presence' like it did in the UK.   I posted on a clergy sexual abuse site. not one person either liked or were interested. OK so maybe this group is more men than women...even so...my EFFORT  was not even acknowledged.

Now either I'm seriously out of touch here or Ireland is seriously 'Dead'. I don't think it's me. I think people in Ireland after years of Catholic Church domination are 'sheeple'.

There is NO real user-led uproar about issues. What there is tend to be seen as organised by either fanatics or fringe radical left political lunatics!  I've come to the conclusion Ireland is not a country where 'dissent' is liked or supported, despite our great history in freeing ourselves from 'slavery', (only now to be 'slaves' of the EU TROIKA and especially Germany).

It's not that people don't complain, they do, and the clergy abuse groups and the Magdalene groups have been vocal, loud and enormously successful, and still active, and now the mother and babies home groups are raising up . So 'user-led' groups have changed the scene , at least in that area.

The disability groups are, unfortunately hampered by established 'disability charities'; no active 'user-led' groups exist. Those disabled people who do challenge are those employed by the charities. So disability 'activists' are not independent. and I've found 'getting -in' to these already established disability groups almost impossible. WHO ARE YOU is almost roared in your face!  I'm never invited and never told what's going on, It's lonely and it's hurtful and I don't think I've done anything 'wrong'. Believe it or not I am shy, and generally nervous, I have to be 'helped' to join in. It does not come easy.

But 'dissent' is just not HERE!  Keyboard warriors urge people to protest, demonstrate, challenge and no-one does or says anything. It's left to the few who do on a regular basis...and these are viewed as cranks. and others mumble "what's the point?"

The community activism problem is more acute if you are a 'blow-in', you come from outside. And I did. There is suspicion, hostility for the 'outsider' trying to 'get in'.  But I don't know HOW to 'get-in' other than to try what I've always done and successfully in the UK. that is...to do something.

Am I culturally 'out of step' ? Have I not done an 'Irish' thing? Or is the Irish psyche so damaged by Catholicism and 'do as I say' then we'd all like to admit, which has created a whole nation of people who don't know the word 'activism' or 'direct action'?  I think so, sadly, I think so.

I will keep trying to help here in Ireland because 'helping' is what I like to do...but constant knocks do nothing for my self-esteem and Ireland is proving a hard place to live.

When all we want to hear is GOOD News!

When all we want to hear is GOOD News!

Failures of Disability Activism in Ireland, no ‘army of discontent’

 

This was NOT a ‘good news’ week for me.  But as a disabled/sick woman I am not allowed to complain.  Not allowed to express what people may perceive as ‘negativity’, ‘moaning’, or ‘self-pity’. 

I suspect as we all suffer in some shape or form ‘austerity’ politics, all read daily of the misery of ‘austerity’ from homelessness, cut medical cards, increase in a range of ‘taxes’, sick people not getting treatment; that if I ‘complain’ I’m seen as ‘the woman who thinks she’s the only one suffering’. There is reality in that, I know I’m not the only one, yet when personal is so painful I’d like to know someone will listen.

But in expressing the truth, the frustration and the injustices of health care and community non-provision to myself and twin sister I’m seen as the sick person who is not ‘Brave’, ‘stoical’ or the person who on dying they might write “she never complained”.  Well there’s no chance of this latter comment being etched on my gravestone. I will, no doubt go down as the ‘grumpy sick/disabled witch’ who reminded people too often of a) their own suffering (fellow sick/disabled people) and b) reminded ‘well’ people of their guilt and collusion in doing nothing to make sick/disabled people’s lives better and c) reminded HSE professionals of their own complicity in creating suffering on those they profess to ‘care’ for, but mostly d) for placing full responsibility for the ‘chaos’ of my life, and other disabled/sick people’s lives, at the Dail gate! (Particularly Minister Kathleen Lynch who ignores everything I send to her and her secretary who does a marvellous job of not allowing me within earshot of her). 

This is where the collective national plot has been lost!  Too many acquiesce – stay silent – or ‘bravely bear their sickness/disability’ towards sainthood and admiration. Or else they take on the ‘brave-quiet’ persona, so much applauded.

Is this why the Irish Wheelchair Association sells angels when fund raising? Is this why more and more fund-raising is based on ‘look at those poor sick/disabled people’ rather than challenging policies that create our hardship in the first place.  It is far easier to see us as pathetic ‘poor’ miserable creatures than vilify a government hell bent on creating suicidal sick and disabled people. 

It serves non-disabled people well to put us in the ‘brave’ box rather than the ‘agitator-fighter-complainer’ box.  I know the box I’d rather be in.

That’s the box I inhabited this week after a totally and utterly futile visit to my consultant.  Who was more intent on writing facts in my file than listening to my daily living ‘gripes’. Who; basically, is not able to have a CONVERSATION about the complex issues I face.  Who was it who said only women can ‘multi-task’?  Well I went in with the ‘multi-task’ and all he wanted was singular tasks. If my bowels don’t work take lactulose and stop the morphine!  Simple.  Er well, not that simple. I need the Morphine and lactulose will not help a bowel that, due to neurological/mitochondrial disease, no longer has peristalsis.  Oh and what do I do about the medication (which I need for parkinsonism) that lowers my blood pressure to such an extent that I recently landed in hospital on monitors for 24 hours? That didn’t get discussed. Why?  Because I forgot! In the multi-tasking of dealing with mitochondrial disease, muscle myopathy, parkinsonism, dystonia, walking, sleeping, pain, foot inversion, nightmares, night time tinnitus; (sounding like a huge extractor fan, which keeps me awake), urinary incontinence and just a few more things too, I forgot!  All which needed to be addressed in my 6 month visit of less than 10 minutes, yes I slipped up.

This consultant (public) was on a fast moving train and I couldn’t get on it!  My train was slower and he couldn’t get on mine!  (or wouldn’t). We both went through the station on different tracks. Consequently I left with NOTHING addressed, but he had it all written on the file. That was important. I came out depressed as hell, feeling not heard, only a number on the seat of his fast moving train. There was no passenger there at all.

A few days later the HSE OT department refused my request to move my hospital bed from a front room to a back room so that I could be in a room where I could open windows for air in summer. After over a year battling for a suitable powered wheelchair for self and twin (we have the same rare disease) which as yet is not forthcoming, refusing this ‘minor’ request (and I thought not too onerous a job),  was a blow too much.

This was to push me over the edge. It was but a simple request and as a 61 year old single woman, with no family support, how was I to dismantle a specialised electric bed and move it? It seemed insurmountable – the last straw. Why do they make it so hard I cried? I was weary and very tired.

Then I decided (totally bad idea, and will never be repeated) to express all my frustration on my local village facebook forum.   Of course I should have known better…that the affluent village I live in only wanted ‘happy/brave/sick/disabled people’ whom they could patronise in fundraising events.  I was lynched. Apparently I was always moaning, always criticising, always self-pitying. I refute that entirely, I raise disability issues as an activist but in this village disability equality is simply not on the agenda. I had discomforted them.

The local lynch mob comprised three people, but their vile comments were ‘liked’ by seven more. None of these people know me, nor I them…their vicious words had me weeping all day and night. None knew the battles I was having with my body, my doctors, or my alleged HSE ‘helping’ ‘professionals’. 

They didn’t know how depressed I was that day or the accumulated frustrations that had reached a despairing pitch of anguish and they didn’t care.   I now understand why teenagers are suicidal, or commit suicide when ‘trolls’ target them. It’s a vicious medium facebook. I was so distressed I rang the Samaritans at 2.30am suicidal and weeping.

Now on reflection I realise it was naïve to think a village facebook forum would offer kind supportive words when all people really want is the ‘heroic’ disabled person, carrying on life as if not a care in the world. A hero who local people are proud to have in their midst, not a miserable git like me!  

A hero who will make non-disabled people feel comfortable in their role as helper to those ‘poor disabled ‘heroic’ people’ for whom we can raise funds for’.

Sad fact is, disabled people have colluded with this ‘hero’ persona by silence.

‘Activism’ is not political in the sense of ‘in your face outrage’ about the plight of hundreds of suffering disabled people.  ‘Activism’ is polite, careful, conciliatory and democratic’. One big demo does not make a movement of disabled people’s voices; ‘enough is enough’ which can be demonstrated daily or weekly in the media.  Instead disabled/sick ‘complainers’ like me; are targeted by vicious trolls as ‘moaners’ and ‘self-pitying’. I am not the grateful!  

If disabled activism was a high profile event, my ‘complaints’ would have been seen as political, not personal, or where the personal IS political.  But in that void all ‘complaints’ are therefore seen as ‘moaning’.

No, we have, and I blame disabled people just as much as non-disabled people, become the ‘hero’s’ and the ‘brave’ and fallen victim to the pressure to acquiesce rather than to charge forth and raise the army of ‘discontent’.  This is facilitated by our ‘charities’ who fearful of losing funding are ‘careful’ how they protest and in ‘carefulness’ collude and fail to represent the reality. Even worse squander money meant to help us on senior employee salaries, and employ relatives and friends, making a cosy little network on the backs of our suffering. Even worse reduce us to the ‘cripple’ needing funds rather than the ‘cripple’ crippled by society and government!

This has led to professionals who are apathetic, disheartened or comfy, and a public apathy where looking after no 1 takes priority over sick or disabled people.  There is anger towards us, subliminally ‘blamed’ for requiring benefits or medical cards, increasingly portrayed and perceived in the media as ‘drains on the economy’. This provides ‘permission’ for government and the HSE to cut with impunity most community services. After all, we ‘cripples’ do not advance society, no we impede it.

This all happens because disabled/sick people do not stop it, (nor anyone else) and with no ‘disabled army’ of discontent, people like me are vilified, locally and nationally for sharing the pain of oppression in a political system of oppression.

This is all satisfactory for the majority of the well/’able’ population, who will not rise against this political oppression of disabled people, and disabled people have lost the fight to mobilise a force for radical discontent in a country where ‘oppression’ has become the political norm.  

 

Dr Margaret Kennedy PhD

Disabled, disability activist, political ‘complainer’!

Austerity power wheelchair assessment

On Friday I had what was called a 'seating assessment'.  I was assured by the OT manager this was not a wheelchair assessment. I still don't know the difference.  The history of this assessment is that Wicklow HSE refuses (to date) to give my twin a decent safe power wheelchair, and mine is not suitable either.

With a new OT manager on board she offers a 'seating assessment'. But it was not a SEATING assessment.  Everything about me was assessed, my eye sight, my movement, my spine, my 'seat' (bum) and ability to move arms and legs. asking questions about concentration, memory and focus were in fact quasi-psychological testing.

I became profoundly distressed in being asked to do movements I can no longer do and burst into tears.  My twin became distressed over the eyesight tests, as it became more apparent this was NOT a 'seating' assessment but a full assessment of our ability to use power wheelchairs. Furthermore it was a MEDICAL assessment done by an OT.

Now this WOULD be good in the normal scheme of events, but Ann and I were fully OT wheelchair assessed in 2012. We were fully assessed medically in London in February. We have been driving powered wheelchairs for two years.  crap HSE second hand ones. But there has  been no 'fault' on our part in driving or using these power wheelchairs. 

The faults are with the power chairs given where wheelchair tyres split, wheels fall off, steering arms fall off etc. dangerous machines, yet the manager said 'health and safety' was paramount (hence the assessment).  But as Ann points out 'health & Safety' is not being addressed by leaving Ann with a wheelchair where wheels fall off, needs new break pads, and has defective motors.

This assessment was NOT about our NEEDS, no, it was about "how can I make sure we don't give the Kennedy twins power wheelchairs"?

When all tests were completed she had to agree we needed them.  But then went on a 'speech' to tell us that the HSE could not provide 'high end' wheelchairs for us, such as wheelchairs with tilt facilities and headrest, etc.  Well excuse me, we have muscle myopathy and sitting bolt upright with no-where to put head is very difficult indeed in various situations such as waiting in outpatients (anything from half an hour to 3 hours) , travelling on long train journeys. Weak muscles and profound fatigue from a disease that causes the energy making organelle - mitochondria- to die is surely an important aspect of our condition?

Then she mentioned that as we 'could walk' this was another barrier to provision.  This is a completely ignorant comment.

wheelchairs are not just for those who cannot physically walk...they are used by people with a range of diseases from Cystic Fibrosis, Lung diseases, heart diseases, muscle weakness, extreme fatigue due to disease processes. Those who , essentially, cannot walk far...We fit that criteria due to five separate processes a) parkinsonism b) mitochondrial disease c) dystonia d) auto-immune diseases e) muscle myopathy.

Coming away from the assessment I was both angry and upset.  Upset by having to 'prove' I was not trying to 'filch' the system, having to 'prove' I was sick and disabled, having to do tests I could not do, and basically being made to feel that in asking for decent, good, safe, stable power wheelchairs designed for our needs constituted asking the HSE for 'high end' wheelchairs.  Even if we were, if it fits our needs so be it!

this was an 'austerity' assessment, a manager trying to see whether we needed power wheelchairs...whether she could deny our needs.

The whole conversation afterwards proved it! I have no doubts about it, Wicklow County Council do NOT want to give disabled /sick people DECENT wheelchairs!

Second hand, reconstituted wheelchairs of 11 years old is a disgrace and a perversion of 'care'. Its time we disabled people told the HSE that wheelchairs are not a luxury item.  'High end' is what is needed for MOST sick and disabled people.  Not crocks with bits flying off!

We will continue to fight....

But why should we have to?

The Hippocratic Oath

You might think this is going to be a 'poor doctor under so much pressure' blog.  But it is not.  The principles of medicine are just the same as they were pre-austerity as they are now, post austerity.  The Hippocratic oath used to be sworn by all doctors but I believe Irish Doctors no longer swear it. Such a pity. 

Basically most people believe it's perfectly simple: "I swear to do no harm" .  Yet daily we hear that Doctors may not do 'any harm' by actions performed but MAY by actions NOT performed! In others words ignoring issues does harm, but does not constitute , necessarily, misconduct. 

Not referring a patient to physiotherapy, or not agreeing for a letter of referral may not be seen as 'misconduct' as doctors can usefully argue "it was not necessary - in my view" .  Thus they save government money by keeping clients away from these services.

Part of good doctor-patient medicine is communication.  but this is not happening in the public sector. you email, you write, you phone but in the public sector RARELY does a doctor respond.  This is true in Ireland as well as in the UK.  I know.  However if you are a private patient the 'communication' link keeps the patient engaged so that the patient comes back and gives you MORE money, so it's in the best interest of private doctors to 'communicate'...and they DO. I know.

It is NOT in the best interests of public doctors to communicate with patients (outside their outpatients appointments - which can be 6 months to a year apart) because they are not rewarded for doing so. It takes up his/her time, the patient is not paying you and sure as hell the public sector HSE won't be paying you...so don't bother communicating.

Take an example of a patient who persistently rings her public consultant's secretary to seek a few words, even an appointment with her consultant to have continuing, to them urgent or at least distressing and important, issues 'sorted'. Well it doesn't happen.  Endless emails and phone calls are ignored and the patient becomes more and more distressed, more and more frustrated, more and more feeling abandoned, isolated, rejected. Such rejection sets up a deep hurt and further deep need to 'connect' with the consultant who can help him/her. So the cycle continues....more emails from patient.

What happens then.  The consultant becomes raging and angry and sends a letter to his/her GP to say if the patient is 'unhappy' he/she should seek another consultant. Perfect.  How to win friends and influence people.

I know this consultant and I was not happy with this communication to the GP. cc'ed to the patient. The patient was NOT contacted directly.  This is not nice, in fact this is horrible.

But such is the position of 'austerity'; austerity is creating very poor practice indeed.  Consultants and GP's take it out on their patients and somehow create a scenario that it's all the patients fault, and nicely gets off the hook as the patient is blamed.

Bring back the Hippocratic Oath before the ethics of doctors becomes so bad that the patient dies.


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