I once worked for a company that made its fortunes on a product called 1-2-3. It was that easy to use. That was their message.
Here is my 1-2-3.
(1) Persons with severe acquired brain injury have been abandoned by the Irish health system – with dire consequences for them and their families. I could go on and on and on about what these ‘dire consequences’ are, from mental health, to physical health, to financial and relationship issues, and I am sure many of you could add to this list yourselves. This is a, largely untold, scandal.
(2) The Irish health system, represented by the HSE, is not capable of providing the support these persons require – and, I would say, are entitled to in accordance with their human rights. This is despite the Minister of Health and the HSE publicly stating that they would provide this help, at least in terms of the provision of funding for a three year pilot project aimed at connecting what research into neuro rehab for severely brain injured persons has been telling us for years with the reality of neuro rehab. This is, sadly, not surprising, given the dysfunctional state of the HSE. And there is not much we can do about that.
(3) We need to offer an alternative to the offering by the health system and demonstrate how neuro rehab can be brought into line with recognised standards of care and the human rights of those affected. Rather than continuing to write begging letters to the HSE to please honour their commitments; rather than wasting time trying to comply with their requirements which are largely an exercise in ticking boxes anyways and an attempt to protect themselves; rather than draining energies and becoming depressed because of a lack of progress. I will start writing and implementing a plan that will allow us to deliver much of the services that are needed. Starting tomorrow. And to be implemented before the end of the year.
Couldn’t be easier.
And. I could not even contemplate what failure would mean.
What you have written is wise; all I can add is I have been an activist in writing; talking to politicians where possible and with the back-up of my partner KT and all I know is that 20+ years seems to be in vain and lots of lever arch files. It is a real case of if you have TBI; a mental health diagnosis/prognosis the message is loud and clear and it is ‘paddle your own canoe’ we will run you through all the bureaucracy you want and in the end you may even get to be mentioned at the Public Accounts Committee for your toil but the honest truth is nothing gets done and people are just put out to pasture. This is why I want to support you and Padraig on your journey in any way I can. My partner and I have done the donkey work of writing and a lot of it is there on citizen journalism sites. You have the opportunities to leap frog; alas my energy is low because now I am 10 months into breast cancer with as Prof Crown puts it the methodology of a “Sledge Hammer to catch a fly” ie operation, chemo and then radiation. Today was good news. I have no further appointment with the Oncologist Radiologist Professor Armstrong until next year.
It is essential you continue to support Padraig and I mean there must be a system of neuro-rehab similar to Germany; or to Denmark (someone told me they are very pro-active there).
I know it is one way with me writing back to you but I have a narrow range of thought so understanding beyond basics is impossible for me. Twitter is my augmented memory connection with the world kicking my brain into gear but I remain a constant for action and improvement especially related to brain injury and mental health (now cancer).
Enjoy the evening … at last summer is here.