Hi David,
Here are some comments from the Stroke Foundation Facebook community. Your blog kicked off a great discussion - thank you.
Cate English
Same for me. I was lucky I had private health cover & savings. It is so critical to get straight onto neuro rehab & allied health to help your brain whilst it’s healing. Excellent post, thanks for sharing, I hope it helps others & I hope you are doing well in your recovery
Barbara Wolfenden
In a situation like this it can also be beneficial to contact local universities eg. Speech pathology dept, and ask if they run a clinic or research project that could assist you.
Michelle Truman
I could write a book on this topic, but I'll try to keep it brief
In private rehab the length of inpatient and outpatient care is determined by the person's health insurance policy.
In public rehab hospitals for every patient who is occupying a bed, they have another person stuck in acute care, waiting for a bed to be available so they can be transferred. For public outpatient rehab there is a finite number of available hours, linked to staff numbers.
Allied health teams need to make very difficult decisions to give the beds and the care to the patients who need it the most. It's a system that delivers a 'good enough' outcome. This came into very sharp focus for me while I was an inpatient. One of my therapists said to me 'You've got young kids so we need to get you as good as we can.' I smiled and nodded happily in agreement. But afterwards I reflected and realised that meant 'good enough' and moved on out, is what the system delivers for most people. Can the person get around without injuring themselves and can they safely make themselves a cup of tea and something to eat? Righto, see you later.
The reality is that in our system of universal free health care, that care is not infinite. It's limited by the number of beds and the number of staff. If we want more funding directed to our hospitals (and most of us here would) it means less money for some other public service. Policing. Education. Take your pick. With population growth and an aging population the demand on the system is growing faster than we can fund it. Anyone want to pay more tax?
In terms of accessing ongoing post discharge rehab, some services are offered at community health centres. There's some Medicare coverage for part of the cost for some allied health services with a referral and sometimes a Mental Health or Chronic Disease Plan from a GP. How often a person can see these services is dependant on their finances and it adds up pretty quickly. This is prohibitive for many stroke survivors in their first year post stroke when they are potentially not working, or on significantly reduced hours. There's a limit of 10 visits per year for psych and 5 in a chronic illness plan. The Medicare coverage doesn't go far.
For those with private health insurance, there's still an out of pocket cost. Say a person fractures their wrist. They might see a physio 4 or 5 times. After rebates it might cost them $70-80 a pop. All up they're out of pocket about $350. Now imagine a person is seeing two or three different allied health services. They might see them once or twice per week for 6 months or more. Any Medicare or Health Insurance cover runs out after a few weeks. It's a whole different ball game and genuinely beyond what most people can afford.
Then there's the issue that almost all Speechies, OTs, neuro physios and psychs are fully booked out. Some have waiting lists. Most have closed their books. A VERY BIG part of this is the NDIS, and in particular NDIS plans for Autistic children and teens. The average funding for an Autistic child is around $10K per year. I know, I'm the parent of an Autistic teen with such an NDIS plan. Pre plan they saw a psych 10 times a year (once every 4-6 weeks) because that was the limit of Medicare covering around half the cost. Post plan they see a psych fortnightly; 26 times per year. Pre plan they didn't see a Speechie or OT at all because I couldn't afford it. In their plan they have funding for fortnightly Speech and OT. We're on many very long waiting lists and some places that would be perfect for what they need aren't taking new patients.
Of course people with NDIS plans have the funding because they need it. I'm certainly not arguing that they do not have a very real and legitimate need. But the system hasn't grown to match the additional demand that the NDIS funding has generated.
I have a teen starting university next year. With my guidance they have enrolled to study OT at LaTrobe. I'm trying to be part of the solution! We attended their open day a week and a half ago. They told us that 98% of LaTrobe OT graduates have a full time job within 2-3 months of graduating. The other 2% have chosen to travel once they finish uni. Many OT students have secured a job before they even graduate, that's how strong the demand is.
Like our poster, I connected to ongoing rehabilitation through personal networks. In my case it was in research settings.
The 6 month magic window is a myth. Our brains are plastic and can be retrained for the whole of our lives. Norman Doidge has a lot to say on this. The gains are not time dependent, but they are therapy dependent. Brain rewiring doesn't happen through osmosis. If it did we wouldn't have rehab hospitals.
To find the positive in this problematic delima, sometimes a break from rehab isn't such a bad thing. It gives a person a chance to consolidate and practice what they've covered so far, and be a person rather than a stroke patient for a while.
After a break GPs can refer patients back to public rehab hospitals for further bursts of outpatient therapy targeting specific persistent issues. Whether the hospital can offer this service and for how long is resource dependent, but 6 weeks of rehab, with 1 hour sessions, twice per week, is often not beyond the realm of possibility.
Some people are able to incorporate therapy into their everyday lives, although that's a bit trickier with speech. For hand therapy I did A LOT of cooking and gardening and threaded more pony beads than I thought was humanly possible. Other people I know have set up home woodworking and music studios to improve dexterity. It's about doing the things that you love that align with your therapy goals.
Although it's not ideal by any means, sometimes even one or two sessions with a Speechie or OT is enough to get advice about where to find resources for ongoing self directed therapy. I was fortunate that I was given this advice by the discharge team in my family discharge meeting.
The people I feel for the most in all of this are the people who are discharged from acute care without any therapy at all. Rehab hospitals give patients access to a range of psychosocial supports and even people who can walk need access to these vital services.
Not so brief, but not a quite a book!
Dave Curry
Same as. It feels like everyone is " it's the way, we always have done". Where are the renegade health professionals who are willing to make a significant change!!
And yes I always ask.....
Jenny Sellars
Many survivors will tell you that the "6 months" is a myth. While I agree it is good to start therapy early you can get improvements for years after. I've heard of others and seen it with my daughter that patients can be very anxious and depressed if they think they are running out of time. The stroke journey is already an emotional and stressful one. Do the best you can with the therapy and celebrate the achievements/, milestones on the way-even if it doesn't happen in the first 6 months.
Mirela Giles
Thank you for sharing! I felt the same after I was discharged: very much on my own. Sooo, I did a bit of research and scientific evidence indicated that traditional speech therapy coupled with music/ singing therapy is so much more efficient than traditional speech therapy alone. I found a local music college and took some basic singing classes. These helped get my tongue untied, so to speak, BUT the game changed completely and my speech improved immensely, in a very short time, after I took drumming & singing classes with another local music therapist.
Hopefully this info helps.
Jo Barron-Perry
This happened to me - sent home without a rehabilitation plan or contacts for suitable specialists. I was deemed to be not affected neurologically as I passed their tests quickly done in hospital. When in actually fact it’s taken years for me to recover due to lack of financially help especially with stress, fatigue and sensory overload, reading and numbers. As an engineer that’s been the most distressing part. So using LinkedIn would not be of use to me as it’s totally different field
