Interviewing Neuro Heroes’ cerebral palsy specialist
In May 2021, I started a 6 week workshop with Neuro Heroes. The Neuro Heroes CP empower course is an exercise programme that’s designed with cerebral palsy in mind. I didn’t know what to expect but I really enjoyed the course!
If you want to read my full review of CP Empower, be sure to check out my previous blog post which I’ve linked below.
Read more — Cerebral Palsy and Exercise: Reviewing CP Empower by Neuro Heroes
I appreciate the range of experiences that people can have when trying to access healthcare. Having cerebral palsy as an adult can feel like unknown territory, yet I felt Bex had a lot of wisdom to share. It can be so difficult to find a physiotherapist who specialises in cerebral palsy.
As a result, I was so excited to interview Bex. I wanted to ask her all about the CP Empower workshop and how she came to specialise in CP.
Hi Bex, tell me a bit about yourself and what brought you to Neuro Heroes?
I am 32 years old and currently living in London but grew up down on the South coast near Brighton. I currently work full time in the NHS over three different part time jobs. It is great as it’s so varied, but can have its challenges.
My collaboration with Neuro Heroes all stemmed after dinner with Anna, one of the founders, who I worked alongside when she was in the NHS. She was talking about her classes and the ethos of Neuro Heroes. They, above anything, tries to be fun, dynamic and motivational. It seemed to come at the perfect time as I had already formed the concept of CP Empower in my head. This gave me the push to get it down on paper and work with Laura and Anna to bring it to life.
For someone who hasn’t heard of a neurological physio, how would you say this is different to the physio you would typically receive on the NHS?
Most people when they think of physiotherapists often mean musculoskeletal or outpatient physios. These are the physios that most people would routinely be referred to by the GP. They more commonly deal with problems of the bones, joints or muscles for example back pain or after injury.
Neurological physiotherapists, which is where I specialise, tend to work either in acute hospitals, rehabilitation centres or in community and outpatient settings. People can access on the NHS with a referral from people like a GP, consultant or orthotist. We help to optimise function for those with new diagnoses or long term conditions such as multiple sclerosis, Parkinson’s disease or cerebral palsy. We also assess and treat people in hospital after stroke, neurosurgery or following spinal cord injury among other things. Neuro Heroes focuses on offering additional exercise opportunities for people living with a Neuro condition. All the sessions are at home, so run remotely over Zoom.
There are a number of different specialist areas of physio such as respiratory, orthopaedic, paediatric and a lot of overlap within all areas. This is the reason as physiotherapists we rotate through a number of departments or hospitals prior to specialising.
What made you want to specialise in cerebral palsy?
Prior to joining the cerebral palsy team at the National Hospital for Neurology I had only treated a small number of adults with CP within the spasticity clinic at NHNN. In these clinics we would often see those with complex dystonia or spasticity but It was the more mobile patients that initially piqued my interest. I had never completed paediatric rotations as a junior physiotherapist. This means I wasn’t exposed to the changes growing up with a condition such as CP can have on the body. Leg length discrepancies, orthopaedic surgery, boney torsions are commonplace for adults with CP. However, adults that develop a neurological condition later in life usually don’t experience this. It was the added complexity in problem solving, why they may be experiencing things such as pain or difficulty walking that first got me interested.
It was only after I started working on the service that I truly realised the extent to which adults with CP tended to fall through the cracks during transition and especially in adult life. I’m hoping to have an influence on this with Neuro Heroes courses like CP Empower.
Read more — Cerebral Palsy and managing pain
Unlike other neurological conditions that have regular reviews, we are frequently referred patients once they have hit crisis point. This can be with falls, pain, nutrition, spasticity or other ailments rather than trying to prevent these changes before they occur. I have learnt so much in the last three years from adults with CP. Specifically in regards to resilience, empowerment and not letting disability dictate what is achievable and this ethos is the basis of CP Empower.
How did you design the CP Empower course?
As mentioned before, the basis for starting CP empower was due to common themes I was seeing in adults attending the CP clinic in the NHS such as pain, fatigue, or walking changes. These are all problems that can occur when getting older with CP and falls under the umbrella of ‘post impairment syndrome’. I am surprised at the amount of adults with CP who had never heard of post impairment syndrome. I felt this was a key area that people should be informed of, to help manage their CP in the long term.
My main aim for this course was to provide a supportive place to educate individuals. I wanted to talk about ageing with CP and empower them to either start or continue exercising. The exercises were designed to target and address different areas such as strength, balance, coordination and flexibility. It is the variety in exercise week to week that I am hopeful will allow people to find something that suits them. This will allows them to continue long after the course has finished.
Neuro Heroes is all about using evidence and the physiotherapists’ experience and expertise. In tern, this brings people lively and varied opportunities to exercise. We know people are more likely to keep active if they work in a group than on their own.
What evidence or research is behind it?
People with CP tend to have constant input through childhood and as they become adults are left to their own devices. Falling, for example, is common place but often isn’t questioned or addressed until it may result in a hospital admission.
Evidence shows that the average age adults with CP can experience a deterioration in their walking is 35. They have 5.83 times more falls than adults without CP, and are 1.6 times more likely to develop hypertension (high blood pressure). Research tells us that adults with CP have significantly higher levels of mental and physical fatigue than those without CP.
From a typical CP Empower session, what can someone expect?
Each class working the course is a combination of 40 minutes of exercise and a 20 minute discussion. The course is delivered over six weeks, in a group of up to nine people, over Zoom.
The tailored exercises are suitable for different abilities, with seated and standing varieties. I aim to make the exercises challenging to their ability but above all ensure that we have fun whilst doing it. The benefit of the smaller groups allows feedback through the class for technique and motivation.
For the discussion component I have focused on the six different topics commonly associated with ageing and CP. We discuss why adults with CP may experience this. Also, how exercise among other things can help to manage these symptoms.
The aim of the section is allow peer support and learning among the group, It is also a fantastic way to reiterate that there are others who are also experiencing the same things. We provide a handout each week so people have all the vital facts and information they need, in one place.
Can someone join if they’re an adult who hasn’t had physio input since being a child?
Absolutely!! This group is open to anyone that wants to join it – from those who haven’t exercised in decades to others that regularly go to the gym, we can all learn from each other.
There will always be aspects that aren’t being incorporated into your routine, for example balance exercises. During the six week course I am available and can be contacted. This can include any queries or questions they may have regarding their exercise or activity levels. This may be beneficial particularly if they haven’t been able to access a physio in a number of years.
We ask everyone who wants to join to fill out an assessment form prior to starting. This is so that I can gage activity levels, baseline mobility and things that may impact their ability to participate in the class, such as pain. But the most important thing is that they come to the course ready to support each other, work hard and have fun.
How did you find the first set of classes?
I loved it! I had so much fun creating soundtracks for the different weeks. As well as trying to balance the exercises so that they were challenging but also exciting and varied. Watching this come to life through everyone that joined CP Empower was amazing.
Everyone gave it 110% no matter how silly some of the exercises were which was fantastic. Topped off by such a great group with team spirit throughout the sessions and discussions which made it all the more enjoyable. Neuro Heroes has had lots of interest in the next course already!
The next CP Empower workshop starts 28th September. You can sign up on the Neuro Heroes website or contact them on social media if you have any questions.
~ Chloe x
Make sure to check out my full review — Cerebral Palsy and Exercise: Reviewing CP Empower by Neuro Heroes
