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.
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