Run. I’ll sing it one last time for you, then we really have to go. You’ve been the only thing that’s right In all I’ve done. And I can barely look at you, but every single time I do I know we’ll make it anywhere, away from here. Light up, as if you have a choice even if you cannot hear my voice. I’ll be right beside you dear. Louder. louder! And we’ll run for our lives. I can hardly speak I understand why you can’t raise your voice to say. To think I might not see those eyes makes it so hard not to cry and as we say our long goodbye I nearly do.
Everybody has a choice. In elections (like today). In life (like every day).
Isn’t that absolutely fabulous? Taking charge. Pádraig making his choices. Like them or not. Isn’t this what it is all about?
Not about meetings. Not about people covering their backs. Not about people worried about what’s not theirs. Not about reports. Phone calls. Patronising decisions. Making decisions on behalf of others. – It’s about Pádraig making his choices. For candidates and parties. For life.
P H A N T A S T I C.
And you know what? – I bet his vote will make all the difference. I mean that. In so many different ways.
Back to Berlin. Or is it ‘from’?
Made some great contacts at the Hannelore-Kohl Stiftung’s “Nachsorgekongress” (Conference on After Care) and learned a lot about how the support for survivors of ABI is constantly evolving in Germany. I have discussed some initial easy-to-realise collaboration with the Hannelore-Kohl Stiftung and with the Selbsthilfeverband Forum Gehirn (Self-help Group Brain Forum) for persons with an ABI and their families. Also learned a new acronym: MeH, Menschen mit erworbener Hirnschädigung (People with ABI). As there was also a French group of people affected by ABI, to me it looks like as if there was good chance of a European Initiative in the making for some time in the future.
It is strange phoning home to find out how Pádraig and everyone is doing. Can’t wait to get back. — There was a lot of reassurance from people here in Berlin that what we are doing is the right thing. Life continues, maybe life is different, maybe it’s a different life (on person affected said that this is his ‘second’ life). They all highlighted how important mobility and inclusion is. One incredible (but perfectly logical) point various DOCTORS made was that every opportunity for ABI survivors to move and to feel their bodies was crucial AND that transfer in a lifter was absolutely ***inappropriate*** in this context. I wonder if that figures in the education of physios and OTs.
I mentioned in a previous post that I wrote up a draft proposal for “Teach An Saol”. Here are the links:
I also mentioned that I was going to share some quotes from draft reports prepared by Irish Experts on neuro rehabilitation. Note that this is not final and not signed off. It’s a bit long, but worthwhile reading it.
There is a significant body of international evidence to support the benefit and cost effectiveness of specialist rehabilitation services within a modern health service. In Ireland there are profound resource and delivery gaps in rehabilitation services when compared with those in other European countries. Chronic underinvestment and the lack, until recently, of a coherent national strategy to guide the development of neurorehabilitation services are the principal contributors to this position.
Emergency trauma and medical care in now more responsive and effective; more people are surviving catastrophic injuries with complex, life-changing neurological, vascular and orthopaedic effects. This has led to an overwhelming unmet requirement for specialist rehabilitation services particularly for people who have sustained major central nervous system injuries. This is evidenced, for instance, by the inexorable growth in numbers of people with newly acquired complex disability after neurological injury on a national specialist rehabilitation list.
Many community residential options for younger, severely disabled people do not meet their unique needs where continuing slow functional recovery is possible over many years after their injury. Development of more structured community based rehabilitation teams is required to support patients during gradual step-down from tertiary centres and regional units so that they can be supported in reintegrating within their local communities. New funding paradigms that recognise the unique and complex long-term requirements of severely disabled survivors of catastrophic illness or injury require urgent consideration. One suggestion that warrants closer scrutiny is that of ring-fenced central funding allocated after detailed needs assessment.
Effective and realistic goal setting, with patient and family engagement, across the continuum of recovery and service delivery, is the cornerstone of the rehabilitation process. Timely access to acute and post-acute specialist rehabilitation in facilities equipped to treat patients with complex rehabilitation needs must be realised to optimise the functional recovery of those who survive catastrophic injuries and illnesses. Expansion and standardisation of community rehabilitation services is essential to ensure that the benefits of post-acute rehabilitation are sustained and reinforced as patients make progress in their new lives.
I think our proposal, if supported by the Health Service, would go a significant way in achieving what the Irish experts say needs to be done.
Wouldn’t it be great to collaborate on this exiting project and, together, celebrate the improvements to the current services, and, more importantly, the huge improvements in the condition and quality of life it will bring to survivors?