Physiotherapy was a weekly fixture for the first 18 years of my life. It became cloaked by a sense of normalcy, and sometimes it even attracted curiosity or scorn from my peers in school. When I turned 18, all my connections to allied health were cut. As a child, my physio was funded through the Royal Children’s Hospital, but once I turned 16 – I was no longer considered ‘a kid’ in the eyes of the health system and the funding was no longer provided.
Prior to the NDIS, there weren’t any great adult substitutions and unfortunately, I had to pay full fees like everyone else. I didn’t even consider the implications at the time as I think I very naively assumed I wouldn’t need access to services that focussed on maintaining my body.
Growing up, I had been conditioned with very generalised information about my cerebral palsy. I was told time and time again; it was a non-degenerative condition. The expectation of sameness made me complacent, and even lazy about looking after my body.
That, combined with the fact that I have relatively mild CP that enabled me to move about unaided, gave me a sense of being immune to the rigours of having a disability.
However, by the time I approached my late 20s, I began feeling the effects of my diagnosis more intensely. I couldn’t tackle my disability with the same ferociousness as before. Melbourne winters were brutal, and still are, sending my body into a tin-man state. I became more easily fatigued, and I even cut back my work hours.
There is an interesting domino effect that comes with having this diagnosis. As a child you are bombarded with allied health and professional interventions. I never considered the economic cost of physiotherapy when I was a child because I didn’t have to – neither did my parents.
How does someone make sure they’re getting the best service possible? What are the questions you should ask before working with a physiotherapist one-on-one?
The general approach of most physios is to set goals within the confines of that one relationship. However, everybody’s medical circumstances are unique to themselves. A good physiotherapist should get a detailed medical history, and assess how your body is able to perform, and set realistic goals of where you would like it to be.
A good physiotherapist will observe and learn the quirks of your body
You may hear this a lot, but everyone’s CP is different. The second physio I saw under my NDIS plan was much more thorough as she completed two long assessments. The first session was focusing on my medical history and getting to know me, and the second was focusing on observing my balance, movement and coordination.
My left foot does this thing where it sticks out to the left when I move. During our assessment, my physio asked, “has your foot ever been assessed?” I thought about it and realised it never had.
“Ok, we need to look into that, because that could lead to hip problems in the future,” the physio replied.
When she said this, I was caught off guard. Why hadn’t it been addressed? People with CP, and particularly adults, report chronic pain, complications with hips and spinal issues that often result in further surgeries. It seemed startling that this can all be prevented with earlier interventions.
A good physiotherapist should make you feel involved in your treatment
The first physiotherapist I saw under my NDIS plan did an initial consultation that was too short, and our follow-up sessions consisted of deep massages. A treatment plan was never discussed, so during our first treatment session, I was completely caught off-guard when she asked me to take off my pants and shirt.
My second NDIS funded physiotherapist took a different approach. She identified some specific barriers in my movement, and we had an open conversation about potential risk factors I might have to face as I got older.
So many people with CP are told their condition is non-degenerative – but this doesn’t mean it is unchanging. People often report chronic pain, changes in mobility and quality of life. Changes like these result in complex surgeries, osteoporosis, hip replacements – often by the time the person is in their 40s.
Your physiotherapist should make you feel educated and empowered about understanding your own body and its unique needs. A good physiotherapist won’t just tailor an exercise plan, they will explain why they want you to do such specific exercises and its benefits.
A good physiotherapist will work with families
Sometimes individuals with CP require extra support from their families, particularly if they need help absorbing information, or there is a learning barrier.
Naturally, loved ones will want to ensure the person is being supported and looked after and will want to see the treatment first-hand so they can replicate it at home.
A good physiotherapist should be open to collaborating with families and communicating the individual’s needs. The physiotherapist should be open to answering questions and addressing concerns the family may have.
A good physiotherapist should understand the NDIS
Many physiotherapy practices are NDIS registered, which means that the patient can receive therapy without paying any out-of-pocket fees. While this is hugely beneficial to people who need it, there are other benefits that you may be eligible for beyond basic appointments.
My physiotherapist and I discussed what was and wasn’t working in my life during our earlier sessions. A massive barrier I dealt with was that I was using a cane to walk. However, the one-point stick that I was using didn’t make me feel safe and secure when walking.
We discussed my consumables package and arranged for me to get an improved cane for purchase. Within a week, the cane arrived, and I was able to perform tasks in my personal life without the assistance of a support worker.
She also ordered exercise equipment for me to use at home. It’s not enough for a physio to create a strict regimen inside the walls of their office; they should be researching any other resources that are in your existing plan, and they should ensure the exercises they prescribe can be performed at home.
A good physiotherapist will work alongside other allied health specialists
It’s all too common for people with CP to adjust to gaps in the level of care they receive, especially after adulthood. However, with access to the NDIS, people can engage with more specialists.
A good physio will identify gaps that need to be filled; they may suggest occupational therapy, orthotic equipment, and other medical specialists. Your physio should also get some medical history from your GP. Working alongside other allied specialists will give the patient a better outcome.
The right physiotherapist will have a background in neuro rehab and developmental medicine
There are lots of reputable physios out there, but different physios specialise in different areas. It is important to make sure your physio understands CP and how this neurological condition affects your body.
Talk to your physio openly before booking your first consultation. Ask your physio if they have worked with patients who have CP before, and what kind of goals they have accomplished with other clients.
A good physio should let you know how confident they are working with CP clients and advise you if they are not specialised in this area.
This article is written by Natalie Corrigan, CPSN’s Information Officer
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