Maybe it’s because I’ve been away for a few days. Maybe it’s because I’m still a bit jet-lagged. Maybe it’s because I’m still exhausted. Maybe it’s because of all this that today I’ve nearly had it. Maybe I’ve nearly had it today because even very high thresholds of patience and understanding can be exhausted.

You might remember the extracts from an official paper being worked on by Irish Government Offices (I referred to them before).

In Ireland there are profound resource and delivery gaps in rehabilitation services when compared with those in other European countries.

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.

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.

While we are trying to address the recognised profound resource and delivery gaps in rehabilitation services, we have to deal with the reality and try to deal with it to help Pádraig.

So – to address the lack of physio (Pádraig now has one visit a *month* by the community physio for an *assessment* – not treatment) we were trying to look for alternatives and were made aware that the HSE do not allow private therapists become involved (ironically, in our case we were given the name of a recommended neuro-physio therapist in our local HSE centre, as no neuro-physio is available in the community); then, the HSE statement was slightly revised telling us that it could only happen under certain conditions.

It’s a well-known fact that a “lack of movement accelerates the degeneration process of the human body” – which is why a German doctor had prescribed a MOTOMed with arm trainer for Pádraig, the insurance company had reviewed and approved it, and we had used it over 8 months with 4 times a week physio sessions. When we had expected a call from the HSE a couple of weeks ago to tell us that this MOTOMed with arm trainer was now on the way – it was, in fact, a call announcing that Pádraig’s three months to use a MOTOMed (without arm trainers) were up and that it would now be collected! We managed to stop this, for the time being. — We were told again that it would be unsafe for Pádraig to use an arm trainer and that Pádraig would not get one. So, we called the distributor and asked for a MOTOMed with arm trainer — just for a trial, to see if there was any way he could use one in order to stem the stiffening of his left arm.

Today, we got a call from the rep to say that he could not deliver a MOTOMed with arm trainer for trial as an HSE representative had told him that Pádraig could not use one.


To be clear
— Pádraig could not even try one;
— the rep had contacted the HSE and received  Pádraig’s private health information;
— the HSE effectively had stopped the rep providing us with a MOTOMed arm trainer for a trial.

Now –
What has happened to Pádraig since he returned to Ireland, if now, after just a few months, he can no longer use exercise equipment he had been using for eight months previously?
How can the HSE decide whether a piece of equipment is no longer suitable without trying it, without trialling it?

We are getting a second opinion.

Because we know that therapists and doctors are not always right. I am thinking about their decision not to remove Pádraig’s tracheostomy – when it turned out to be the correct decision. I am thinking about their decision to PEG-feed Pádraig upon arrival in Ireland – when it turned out that this was not necessary (I had stopped them re-introducing PEG food). I am thinking about the administration of laxative drug against our expressed wishes – which, as it turned out, were not necessary.

My thresholds are exhausted. As am I.