The HSE is all you got and it has a well oiled machinery - fine tuned NOT to deliver but at the same time to appear to deliver.
So this is how it works.
They offer a few sessions of physiotherapy...which becomes sporadic, non-existant very quickly but in answer to TD's or Ministers they say "She has a full physiotherapy service - because you've seen a physio once or twice.
The physio knows all he has to do is offer a few sessions so he can say - a service was given' . So as I scream in agony from severe oseo-arthritis, muscle myopathy, snapped tendons, inflammation, spasm from my dystonia and disease process - I've allegedly got a physiotherapy service - well where is he?
you have one visit from the occupational therapist, perhaps two or three but then no more - nothing is achieved , thereafter he just doesn't answer phone calls or emails. he's never properly 'home assessed you', He disappears....the armchair he gave you is impossible to manage, your wheelchair needs adjustments, its killing you, not supporting you, he knows this, you're still waiting for a bath tap turner, nothing gets sorted, he 'disappears', yet managers still write to TD's and Ministers "She has an occupational therapist " he knows all that's required of him is to appear to do something, even if it only means 'beginning', not actually complete his tasks! So I have an OT - well tell me -where is he?
The nurse calls once in a blue moon, and I mean, once in a blue moon. but every time you need her, plead for a visit, she's never available. she's in an anti-natal clinic, pre-natal clinic, baby clinic, immunisation clinic, breast feeding clinic, school visits - she's not available to you if you are old. She admits she doesn't know how to assess you for 'needs' as she doesn't know anything about your disease. So she assesses 'down', giving you minimum scores, because she doesn't know how to assess you.
She can't support you because she doesn't 'know anything about your disease', She fails to get your promised 'respite care', promised for months, or your falls alarm, yet the HSE manager tells the TD's and Minister - 'She has the services of a nurse. Do I?
The social work manager, is supposed to be my 'social worker'. she never visits, returns calls or does anything much . oh yes, she did try to get my medical card back. but invariably all she does is - not much. You might get her on the telephone, and she'll say "how are things going" which she should know if she's your social worker but she's not. She's described by the HSE manager as part of my 'clinical team' but social workers are not 'clinical professionals.
do they? but then this manager described himself as part of my clinical team once only to back-track when I confronted him about this .
But the same manager repeatedly, nauseatingly, describes to TD's & Ministers that 'she has a social worker' - I don't. and as a former social worker myself if she's doing 'social work' I didn't train her!
So yippee, I have a full and active 'clinical care team - '
so why do I suffer so much? Suffer, not able to cope because I don't have...
- enough PA hours
- an armchair I cannot sit in without dire agony
- a tap-turner
- a wheelchair I cannot sit in without extreme pain
- respite
- physiotherapy (recommended by consultants)
- hydrotherapy (Recommended by consultants)
- pain relief - help
- any life outside my house
- severe PTSD
- severe depression
- at the bottom 20% of the population in 'quality of life'
- not coping, confused and in disarray
What is further galling is that TDs & Ministers believe the HSE managers because its easier. They are almost without exception, not willing to fight the corner - over time - of an elderly, old, disabled, sick woman. I'm not a child of 5 in pig-tails and ribbons, with angelic face. I'm an old 'wrinkly'. not worth it, nearly dead. yes, I'm angry by my politicians ignoring the older person.
These TD's/Ministers absolutely KNOW the HSE is not delivering community care - they know it. But it lets THEM off the hook if they receive letters saying 'Margaret Kennedy (or Ann Kennedy - my twin) 'receive the full compliment of community professionals services'.
A senator, known for his 'disability work' didn't even read our reports we asked him to read. He said "send them to me' - we brought them by hand to the Dail, where we sat and had tea. He admitted months later he never read them - and laughed. It wasn't funny!
TDs write one letter on our behalf, receive HSE bullshit "They receive a full compliment of professional services" and do no more. They never challenge the HSE , never unmask the lies. the 'economy of truth'. NEVER. They've fulfilled their obligation to ask the question - but do no more. They get paid for NOT rocking the HSE boat.
The HSE is 'untouchable', like the mafia, triads, KGB!
Simon Harris, our own constituency TD, ignores us. Stephen Donnelly, our other constituency TD told me years ago he did not deal with 'individual cases'. I wheelchaired away from his Greystones office swearing never to vote him in again. Ditto Simon Harris. Finian McGrath - minister for disability - took our reports, promised to read them - nada - NOTHING.
Minister for Health: Simon Harris
Stephen Donnelly TD FF Health
Finian McGrath - Minister for Disability
all political 'betrayers' of the older, ill, disabled women - Margaret & Ann Kennedy in Greystones, Co Wicklow.So I'm fast approaching 66years old. my last 10 years have been hell on earth and I'm faced with a pernicious, evil, bullying, toxic, abusive tier of HSE managers from hell.
Not the ground level staff - they are pleasant enough...but they don't do what's on the label. they've been 'hypnotised' by their managers to do the tokenistic gesture but not give a service - its cheaper that way. and all of them want to keep their jobs. they don't work for us - they work for the HSE mangers mafia.
You don't say why you need all these services. It would be good to clarify the need so people could understand your issue. The services you mentioned are not required indefinitely. There's usually aims and goals to accomplish and a timeline. Once interventions are complete then the service ceases unless further assistance is required. Yes the HSE is not a well oiled machine, however the professionals working within it are required to carry out interventions based on need. Perhaps you should give a clear scenario or case example of your grievances. Have you actually put in a complaint about something specific? And if so what was the response.
ReplyDeleteTHE SERVICE NEED, REASONS FOR THE SERVICE NEEDS ARE DOCUMENTED IN SPADES BY CONSULTANTS, SIGNIFICANT EXPERTS AND FAR MORE. COMPLAINTS HAVE BEEN MADE, THE NEED IS ONGOING FOR TEN YEARS AND STILL THE SITUATION IS NON-PROVISION AND A LACK OF REAL UNDERSTANDING OF THE LIVED EXPERIENCE. BASICALLY IT HAS BEEN 'FORGET THEM' THEIR IDEA OF SERVICE PROVISION IS ACCEPTED BY THE POLITICAL ELITE, THE PERSON WHO DOCUMENTS LIKE THIS DOES NOT HAVE EQUAL STATUS OF BELIEVED REALITY, THE HSE'S WORD ABOVE ALL IS BELIEVED, YET THIS WOMAN THOUGHT THE HSE BEST PRACTISE IN DISABILITY AND ABUSE AND NOW FACES THE VERY SITUATION SHE FOUGHT SO HARD TO ERADICATE BOTH HERE AND THE UK, ITS AN ABUSE OF POWER AGAINST THE SICK, AND THE CLINICAL EVIDENCE IS WITH THE HSE, IN SPADES.
ReplyDeleteI have a rare neuro-muscular disease. It comprises parkinsonism, dystonia, muscle myopathy and a defect in the 'energy-making' processes of the body. I also have severe osteoarthritis leading to severe spinal degeneration, hip & knee degeneration. I am on morphine. All consultants talk about needed therapies and support to be 'on-going'. The HSE asked "what do they mean by 'on-going'" . The reality is the HSE has a complete unwillingness to enable 'quality of living'. They think...just throw a few sessions, of this or that, and then withdraw. That means huge suffering. Further impairment, and actually contributes to me not coping. If the therapies and support were there I'd be less 'expensive' to hospitals & community services. Its called being 'sensible'.
ReplyDelete