Acquired brain injury - badly need advice

Bobby Womack · 18-05-2015 12:18pm #1

My question relates to getting neuro-rehabilitation care in Ireland, which is urgently required (waiting lists of several months will not cut it in this instance).
My brother recently suffered a cerebral anoxia event in the US and after hospitalisation and a short period in rehabilitation in the US was brought back to Ireland. In hindsight, he was in no way ready to be brought back as there had been a huge number of complications associated with the original condition.

Since his return to Ireland, we’ve been passed from pillar to post in terms of trying to get him the care he desperately needs. We’re stressed, exhausted and frustrated. I repeat, he is not being given the care he requires. He has an acquired brain INJURY. An injury! It’s not psychiatric (although there are implications from the injury). Imagine breaking your leg and being told to go home and let it heal without a cast. That’s what’s happening here. He is now sitting at home and his family is somehow supposed to be responsible for his recovery from a brain injury event. Appalling! There has been no neuro-rehabilitation as part of his treatment. We are desperate here. Can anyone suggest a roadmap? Should we bundle him into an ambulance, drop him off at the Emergency department and demand he be seen? Any feedback really welcome!

neemish · 18-05-2015 1:20pm

Have you tried contact ABI Ireland? They might be able to send you in the right direction.

Bobby Womack · 18-05-2015 1:46pm

Yes. Have tried ABI, Headway etc and all talk about waiting lists. The fact that he didn't acquire the injury here has left him in somewhat of a limbo. He's been to see GP's but there seems to very little few options with regards to his long-term care

Triangla · 18-05-2015 1:49pm

Has he seen a GP to ask for a referral to a specialist conultant/area?

Bobby Womack · 18-05-2015 1:55pm

We have been pushing for a referral for the neuro-rehab area, but the crux of the issue seems to be that it is thought there are multiple cases more pressing than he's in the queue. Therefore, some token respite (one day every second week, and things like that) has been offered. As for residential care, all same the same thing - "the services simply aren't there"

Triangla · 18-05-2015 3:35pm

When you say pushing for a referral, may I ask did you speak to a gp and ask them for a referral straight up?

MrWalsh · 18-05-2015 3:38pm

Bobby Womack wrote: »

We have been pushing for a referral for the neuro-rehab area, but the crux of the issue seems to be that it is thought there are multiple cases more pressing than he's in the queue. Therefore, some token respite (one day every second week, and things like that) has been offered. As for residential care, all same the same thing - "the services simply aren't there"

Can you just clarify the above:

Is the referral you are pushing for in the public or private system?

What do you mean by "it is thought there are multiple cases more pressing than he's in the queue" - who thinks this, is this a medical call that some medical professional is making?

Bobby Womack · 18-05-2015 4:00pm

thank you for the feedback and apologies for the vagueness. i'm not (clearly) a health professional.
@Triangle. Yes, we have asked for a referral and they have provided us with one. The problem, as i see it, is waiting lists. we are repeatedly told that the services aren't there.

@MrWalsh. I don't think they are putting others ahead of him. it is a unique scenario where he became ill abroad so was never brought into the system in ireland when the injury occured. we are trying retrospectively to get him admitted but it seems he has fallen between 2 stools with regards to his care. Every medical professional we have spoken to understands the severity of the case and the need for rehabilitation, so, for example, he is on a waiting list for the NRC in Dun Laoghaire. However, it is care in the short term which is our issue. My elderly parents are charged with his everyday care. This is unsustainable and clearly not best medical practice

MrWalsh · 18-05-2015 4:20pm

So are these public or private waiting lists you are talking about?

Bobby Womack · 18-05-2015 4:33pm

Public. He was living in the US when this happens so doesn't have health insurance in Ireland. i'm guessing that that prohibits him from care here? can he still access private care in that instance?

MrWalsh · 18-05-2015 4:38pm

Bobby Womack wrote: »

Public. He was living in the US when this happens so doesn't have health insurance in Ireland. i'm guessing that that prohibits him from care here? can he still access private care in that instance?

Well anyone with cash in hand can pay to see a consultant privately. But if there is no insurance to pay for treatment then it probably is a case of having to wait.

Did he not have health insurance in the US? If he did can he not have it transferred here?

The unfortunate truth is that unless you have insurance the public waiting lists can be dire for something like this.

Bobby Womack · 18-05-2015 4:59pm

yes, he had US health insurance but is was not international. we have paid for consultants' appointments, but, to date, that is where the treatment has stopped. we were advised that the best thing was to get him a medical crd and then get him 'into the system'. Btw, appreciate the help here

Forest Demon · 18-05-2015 5:05pm

You were right first time. Bring him to A and E if he needs help. They will then be responsible to discharge him if it is not safe. It will take forever to go through the GP. Typical of our health service and I am afraid. Prepare yourself to have to fight at every turn for decent services outside of trauma and surgical.

Bobby Womack · 18-05-2015 5:32pm

yes, Forest. Is becoming very clear that accessing care requires us to bang the table tops. A bit perverse that this is what's needed to get someone with an injury seen to

MrWalsh · 18-05-2015 7:27pm

Bobby Womack wrote: »

yes, he had US health insurance but is was not international. we have paid for consultants' appointments, but, to date, that is where the treatment has stopped. we were advised that the best thing was to get him a medical crd and then get him 'into the system'. Btw, appreciate the help here

Yes. Its getting into the system is the problem.

I had a similar situation myself with a family member who post stroke was not coping at all and yet was discharged from care. In the end we left her in A&E to force them to take responsibility. It was heart breaking though. But it did result in her being admitted and more supports being put in place.

Would it be worth contacting your local public health nurse to find out if there are any supports offered in your community?

Beyond that I think making as much noise as possible with local media, local councillors, etc... is your only option.

Bobby Womack · 19-05-2015 11:37am

I had a similar situation myself with a family member who post stroke was not coping at all and yet was discharged from care. In the end we left her in A&E to force them to take responsibility. It was heart breaking though. But it did result in her being admitted and more supports being put in place.

May i ask how you forced a & e to take your family member? On what grounds did they agree to accept her and not discharge her back into your care?

Bobby Womack · 19-05-2015 11:37am

Bobby Womack wrote: »

I had a similar situation myself with a family member who post stroke was not coping at all and yet was discharged from care. In the end we left her in A&E to force them to take responsibility. It was heart breaking though. But it did result in her being admitted and more supports being put in place.

May i ask how you forced a & e to take your family member? On what grounds did they agree to accept her and not discharge her back into your care?

MrWalsh · 19-05-2015 2:05pm

Bobby Womack wrote: »

May i ask how you forced a & e to take your family member? On what grounds did they agree to accept her and not discharge her back into your care?

I cant remember the exact details but as far as I recall her carer was in hospital himself so she was home alone (and couldnt even use a loo) so we brought her in and explained to triage that there was no one home to look after her as her carer was hospitalised (in the same hospital). Then we left. So as she was in a wheelchair and alone they had to do something. I think she spent the night in on a trolley then they admitted her as a "social" case (cant remember the exact term) but basically it meant that she wasnt ill but because of her condition needed care.

As soon as she was admitted we insisted on a social worker being assigned and forced meetings with medical staff etc and reported all the issues which were ignored upon the original discharge.

She ended up staying for a few weeks then being discharged with better supports in place, meals on wheels, brought to the central remedial clinic daily, home help etc... They were quick to organise all of that when it meant they could free a bed but no one was bothering when she wasnt an inpatient.

It was quite drastic but it did work to some degree.

Bobby Womack · 19-05-2015 2:24pm

[/quote]It was quite drastic but it did work to some degree.[/QUOTE]

This has been most helpful. Much obliged

Bobby Womack · 19-05-2015 2:25pm

[/QUOTE]It was quite drastic but it did work to some degree.[/QUOTE]

This has been most helpful. Much obliged

Acquired brain injury - badly need advice

Comments