Values, Hopes, Ambitions of the HSE in Ireland. 2015-2017

Yesterday forms that my consultant filled out to ask that myself and twin go to the UK were acceptable.  Today they are NOT.

He has to fill out a whole new set of forms for the 'overseas treatment purchase fund' , the E112 forms that allow Ann and I travel abroad for treatment.

Did my consultant know this...NO!
Did we know this...NO!
Did my TD know this....probably (he's FG)
Did the media know this...NO!

Do I know what the changes are ...NO!
Does my consultant know...NO!
Does my TD know...I don't know
Does my GP know...I don't know
Does the media know...I don't know.

Who knows?

It seems only the E112 office.
Changing the goalposts is for one purpose only - saving money.

The rhetoric of this government and the HSE stinks...

The Director General of the HSE, Tony O'Brien, presented the Corporate Plan for 2015-2017. He declared these as 'ambitions' for our services ('Health Matters'; Summer 2015). So health 'matters' to Tony O'Brien. 



here are the 'Ambitions'.

You could weep, I do weep,,, look at it!  Care, Compassion, Trust and Learning. Is this a sick joke? do they truly believe WE believe this guff?

So much care in the HSE that they refused two seriously ill, disabled 62 year olds, with rare neuro-muscular disease decent wheelchairs. That they refused one of them a bath lift, leg risers for her sofa... and so on.

So much compassion that they refuse to dialogue, visit, talk with same two older women. They run rough-shod over policies, denying and interfering when they are not allowed to do so. calling the older sisters 'serial complainers' , when all they do is ask for the care and compassion they are entitled to.

So much trust and confidence that the sisters have they want 'out' of this country, want to commit suicide, want to take the HSE to the highest courts. So much trust and confidence that both have panic attacks on receiving letters with the HSE franking stamp on it. Who handle it as if it is contaminated with ebola!

So much learning is undertaken the local occupational therapists don't know how to properly assess for powered wheelchair and seating for neuro-degenerative disease.  So much learning that consultants don't know anything about rare diseases. So much learning that consultants don't appear to know what a 'care' plan is!

"We will try to live our values every day...."

Dear Director General,

How pleased I was to read of the ambitions of the HSE for 2015-2017. Sadly I can give you evidence that the HSE has breached these 'ambitions' spectacularly in the case of Dr Margaret Kennedy PhD and her twin Ann Kennedy, of Greystones, Co Wicklow.

It is urgent that you instigate a public, independent inquiry into the 'care, compassion, trust and learning' that has been the experience of these twins for over 5 years in Co Wicklow.

Your 'Ambitions' are a mirage, a vision, or hallucination more likely. Drafted on paper worthy of better plans.

You do yourself no favours by writing 'Ambitions' that are truly never intended for operational implementation.

We are willing and waiting to meet you to discuss our experience of Co Wicklow's HSE 'ambitions' for us. The 'values' are breached almost on a daily basis.

Yours Sincerely

Dr Margaret Kennedy PhD    & Ann Kennedy


Will he meet us...probably not.


Where does this leave us...up a river without a paddle. Sure as eggs is eggs, the HSE has no 'Ambitions' for the Kennedy twins, let alone a paddle.

testing for rare disease in Newcastle UK

 

 

HSE trying to take wheelchair off one twin

 

 

 

When the news is not 'sexy' ; is not tragedy 'porn'.

A conversation with an Irish times journalist recently confirmed what I also knew.  'News' has to be exciting, traumatic, disastrous or downright scandalous if it is to be printed. Such news is a 'seller'. The term used is 'sexy' or 'Porn'.  Poverty porn, vulnerability porn,  disability porn, elderly porn, political porn...in other words the new 'porn' has become the titillation required in our newspapers.

So the older person or learning disabled person abused in a home, the young child damaged at birth by medical blunders, euthanasia debates over elderly , sick, dying, homeless people dying , This is grist to the mill...it stirs people, it enrages, it titillates in a different way.  It strikes the heart of those of us who care. and I do care, about all of this. These are worthy stories which need to be reported.

They are what 'sells' newspapers. Big murders, scandal, skulduddery, people in high places unmasked, and so on.  the voyeuristic new 'porn' sells.

So the daily drudgery of ordinary individuals whose lives are decimated by a failing health system, failing care system, failing support system does not draw the heart in quite the same way as a child dying, a young person loosing their legs (particularly if in an heroic act or utter tragedy), or a murder of an older person by their son, or terrorist or vagabond!

The ordinary daily decimated life is not 'porn' enough. it does not sell.

Another thing which does not sell...is any criticism of the 'system' that newspaper owners rely on. Politics has invaded journalism like never before. journalists seem unable to be 'pure in heart'. They write what will sell, Not what will change or improve the system.

There are exceptions of course, there are journalists who have their slot and use it well. Beatrix Campbell, Julie Bindal, Carl O'Brien, Finton O'Toole, come to mind.  The greatest of all in Ireland were Veronica Guerin and Mary Raftery. Both now deceased. Cut down in their prime.

I know Mary Raftery would have highlighted mine and my twin's plight. She would have 'heard', she would have reported it.  She had integrity, she had 'soul', she cared. I knew her...she knew me...I miss her...she was NOT into 'sexy' or 'porn' journalism, she was into truth.

But no newspaper wants the story of the daily trudge of the Kennedy Twins lives as two elderly people with an obscure unknown rare disease, whose lives have been tormented by HSE officials who rather than helping have created further suffering,

Looking at how and why we have been reported over the last few years is interesting.  It has been 1) if we holler outside the Dail with catchy visuals like pink bowler hats or red scissors...this is 'sexy'!  innovative, new, interesting even eccentric.  especially if a 'notable' endorses us in some way.

2) as vibrant, brave, independent twins with rare disease but battling on regardless.

3) if a disaster happens such as wheels falling off a HSE wheelchair...

These are all in the category of 'porn'. All 'sexy'.

But over ten years of struggle to get a diagnosis; of an Irish health system ignoring rare diseases, putting up barriers, not caring, and just...well...treating us (and many others we know with rare diseases) with utter contempt is not 'porn' or 'sexy'.

The fight for a decent wheelchair off the HSE is not 'porn' or 'sexy'.  It WOULD be if we were 5 years old with an horrific disease or physical disability...certainly too, if pretty, with pink ribbons in our little pig tails. This is the 'aw' factor that sells. Not pictures of the 63 year old wrinklies from Greystones, Co Wicklow.

It never is a NATIONAL concern, never reported in the NATIONAL press...I mean, come on...wheelchairs are NOT 'sexy' !  No-one wants to know if I can get from A-B in safety or comfort. Or indeed, get from A-B at all!

this is not 'self-pity' writing here, this is reality. This is how the media works.

The fact older twins with a rare disease are being daily 'neglected' by the HSE services; mostly the managers, intent on not spending money. Not generally the front line workers who try to be kind but have their hands tied.

The fact disabled and ill twins have no-where to turn to get our story heard doesn't 'grab' the journalistic 'porn' industry. The industry of 'sound-bites' not marathons!

The fact those in residential care have HIQA to fight for them but those in community care, living in their own homes have no-one, doesn't seem to be 'sexy' either!

This is all boring Margaret, Boring, Not the 'porn' we need.

So what are twins who languish in an Ireland that largely has ignored the suffering of elderly, ill, disabled, person living at home in their own community...we carry on creating new ways of getting the story out. Trying not to fall into 'porn' or 'sexy' sound-bites which we abhor. Yet being catchy enough to raise interest.

We do-not give up.  We seek to improve the lives of all in our 'boat of despair' .  We fight for all.

The daily toil of many disabled and ill elderly DESERVE to be heard.

                  NO we don't give up easily...even in torrential rain.


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