it is not difficult to say what the HSE have NOT done for two sick women in ireland

Irish heathcare, the Irish HSE.

studying the 'form'

she is also sick and tired of being sick and tired

a pretty embattled scene we have here, i truly hope our minister for health can effect change.
it is tough though being at the receiving end of er, nothing

how many people know how terrible our genetic services are? they are this terrible!

its tough for the fight for care has now gone on for ten years.
what do you do? Expose them?

its very sad to even know, that all, patients and clinicians, hse and departent of health know this fact!

I think you have to.
you can do this through naming the departments approached and the inaction that resulted.
Lets first look at "needs" these are those that the consultants both irish (with international acclaim) and UK professors,head of centres of excellence.
there has been a significant amount, all top and noteworthy.

the hse turn a blind eye.

knowledge breaks ignorance and should bring change. worth a try?

DESPITE saying they would 'honour' the UK reports - they have not.

who is in charge?
Well Tony O'Brien is of course the Director General of the HSe.
he received some emails from top notables, including the retired chief ombudsman for Great Britian and x MP who is my first cousin - he got the standard letter they all got.  it didnt say alot.
the other departments in charge of areas of great concern were all contacted and no response or input,namely - Department of Primary Care, Department of Social Care, Department of patient care quality ??? and Department of Quality Care verification ( i kid you not!)
there were others too, all notified, Ms. Marian Meany, Dr. Aine Carroll, Philip Crowley, and far more.  these are HSE department heads.

they got a run down of my complex disease and our great need.
they didn't respond.

we met Ms. Meany and felt she was nice enough, but effecting change, nah.
We met someone from the quality division, very nice indeed but not a lot coming from that either. He does want me back doing my artwork - oh ye gods i wish! but i still have to make sure i stay alive and get care. 
i have contacted the department of health who say they have no remit over the HSE, i kid you not. they only pay them their wages, well who pays their wages - we do!

so what have i asked for, well:
requested ten years ago and still being requested by top consultants in uk and ireland;

• ongoing physiotherapy ( the hse have a problem with understanding the term 'ongoing' so while they grapple with that for the past ten years we have got nothing.  we get some now, but have been told it will be in small blocks and then six months nada again.  small blocks are six sessions.
• hydrotherapy waiting ten years to dip a toe in a warm pool yep not seen and recommended.
• metabolic nuitritionist - dont think we have them here in ireland
• neurophsyiological work up - don't think we have them here either, we havent seen one and badly need to.
• rehabilitation (whats that?) we don't do that, only in worse case scenario, eg stroke or spinal snap.
• bed surface begging for five years to sort this, through all the above and my area take note of it - in case you feel able to lobby for us - Area CHO6 - manager there is Martina Queally - never met her and dont even know what she looks like.

its so so easy too not to put a face on a client you might begin to 'feel'and that would not be good.

we have a serious problem here in ireland, unlike the UK where they have been hauled over the coals for human rights violations in europe, we can't get that far -we have no human rights so the europeans cannot intercede for us - so much for being best buddy in europe and we giving them all our money!

ireland hasnt ratified the convention on rights for those with disabilities, human rights which means, we either are shit and not human and dont deserve them or we are not equal therefore shit and dont deserve to be noticed

can i come on board? will you have me?

'at the heart?' I feel i am biting dirt and being treated like dirt.  No heart involved at all, at all

it all sounds GREAT, but - where does it get us patients - at the end of the day, do we or have we ever counted.

i am not going away HSE
soon when i recover enough, you are going to see a lot more of us.  and i am thinking serious campaign with information on the damage this group has done to me.
there is some major stuff on my hse files i would like to get out in the media.

it would make your hair curl.
any international individual who reads my blogs, and are moved will you contact Mr. Tony O'Brien DG and ask him what the hell is going on.
should it take ten years to provide basic care for people with a progressive neurodegenerative disorders and will you ask him while you are at it, does Ireland have a eugenics program on at present.
i believe it has!
i also believe the medical confraternity are being bribed not to treat as is happening in the UK, i believe its happening here.

i simply wont allow you kill me off 

yep! says it all!