Cerebral Palsy training day brought valuable insight and connections

Neurokinex was honoured to co-sponsor the Cerebral Palsy Training Day alongside Stanley Smith Case Management on March 3, 2022. 

Co-ordinated and hosted by the Brain Injury Group, this event had a varied line-up of expert speakers sharing their views on diagnoses, therapies, surgical intervention and rehabilitation practices for people living with Cerebral Palsy. 

The audience was primarily case managers, solicitors and therapists working with children, adults and families affected by this condition.

Starting with Dystonia

The morning got off to a fascinating start with Dr Venkateswaran Ramesh, consultant paediatric neurologist at King’s College Hospital Trust talking about dystonia – a condition characterised by uncontrolled muscle spasms.

After covering the definition, causes and clinical features of the condition, he looked at the pharmacological option, including Baclofen, and non-pharmacological treatments, including deep brain stimulation. Dr Ramesh showed some clinical case studies, including some impressive success stories and covered the medicolegal implications of working with clients who have dystonia.

Audio neuropathy

He was followed by Gerard Kelly, a consultant ENT surgeon at Leeds Teaching Hospitals NHS Trust who spoke in detail about audio neuropathy. 

He defined hearing loss and explained how hearing tests can help doctors diagnose hearing problems in children, underlining the importance of taking action as early as possible to mitigate the communication and learning barriers faced by children with hearing impairment. He explained how auditory neuropathy is a specific form of hearing impairment whereby sound is heard but words might not be understood. 

He illustrated this by showing a pixelated image of colours that could be ‘seen’ but not ‘understood’. When the picture was revealed as a tiger’s face, we were literally left with a lasting impression of how this auditory impairment can manifest itself. 

We learned that Cerebral Palsy is one of a few perinatal factors for audio neuropathy, hence the importance to screen babies as young and as thoroughly as possible for its potential.

Visual impairment

We went from hearing impairment to visual impairment associated with Cerebral Palsy with the next speaker, John Elston, consultant neuro-ophthalmologist at John Radcliffe Hospital.

He explained that more than 70 per cent of children with CP have problems with their vision and that all CP cases should be referred to their local Hospital Eye Service for evaluation by a specialist orthoptist, optometrist or ophthalmologist.

John explained some of the common symptoms that indicate visual impairment in young children including wandering eyes that cannot fix on an object, squint (inward or outward facing) and dropped gaze. 

He outlined treatment options that are known to help including wearing glasses and patching and pointed out the importance of having a visual impairment support teacher at school to ensure children didn’t fall back in their learning due to their reduced vision.

Neurosurgery including SDR 

The morning’s talks ended with a fascinating and greatly encouraging talk from Mr John Goodden, consultant neurosurgeon (adult & paediatric), clinical lead for Children’s Neurosciences in Leeds. He spoke eloquently and enthusiastically about neurosurgery treatment for spasticity covering Intrathecal Baclofen (ITB) and Selective Dorsal Rhizotomy (SDR) in most detail.

John explained how pharmacologic agents, including BoTox, can help to improve muscle tone, alleviate spasms, control gastrointestinal effects and help to improve bladder function. John also took the audience through a quick explanation of various physiotherapy and occupational therapy options and functional aids for children including splints, customised walking frames and customised wheelchairs. 

He then went on to talk in-depth about SDR surgery speaking from his great experience of having completed 150 such operations, all of them successful. John emphasised the need for close MDT teamworking for patient selection and post-operative rehabilitation to ensure that the best outcomes are achieved. He explained the selection criteria and showed some very encouraging examples of youngsters for whom the surgery has had a huge positive impact on their physical ability and independence.

As we know all too well at Neurokinex Kids, the rehab after such surgery is of critical importance as children, essentially, need to learn how to move and live with their new body. It can be daunting as their weakness is unmasked following the surgery and they seem to go ‘backwards’ in their ability to co-ordinate their limbs while they re-learn essential movement patterns having lost much of the spasticity. 

John’s talk set the scene perfectly for our Neurokinex Kids presentation where we spoke in detail about our activity-based rehabilitation and protocols and showed our emphasis on strengthening the entire body, working on functional movement and re-training the gait. 

Little big things

John echoed our appreciation of how the ‘little big things’ can be difficult to quantify but can make a big difference to quality of life following surgery. These include improving continence, reducing constipation, improving upper limb function and manual dexterity.

The day-to-day benefits for children able to stand to brush their teeth, walk holding just one hand, dress themselves and use the bathroom make a huge difference to their independence and confidence. We know this so well from our work too!

Recovery, not compensation

By the time Jenny Suggitt, Neurokinex centre manager and clinical lead occupational therapist, got up to speak, the audience was primed to hear more about rehabilitation techniques.

She explained our unique activity-based rehabilitation protocol, how we use locomotor training and wide pulse stimulation to support recovery rather than compensation among our clients. 

Jenny also explained how working with cerebral palsy clients is fundamentally different from working with those with a different form of spinal cord injury, because in the case of a child with CP, their nervous system is intact. She spoke about the importance of not relying on the traditional approach to children’s rehab of bracing the body in anatomically-correct supportive positions and, instead, how to train the body to realign and support itself.

Using case studies to illustrate the success of Neurokinex Kids, Jenny challenged the common perceived wisdom or what Cerebral Palsy rehab looks like, without or without surgical intervention and she left the audience with a clearer understanding of how our unique protocols work.

Community physiotherapy

The day finished with Nicki Keech from SJF Physio and Centaur Physiotherapy Ltd speaking about her work and impressive results. She emphasised the need for services to work together to support physiotherapy at home and in the community and gave some ingenious examples of the benefits to be gained from really understanding what will most motivate a client which becomes increasingly important as youngsters grow up into independent-minded adults.

Heidi Stanley and Nikki Smith from co-sponsors Stanley Smith Case Management closed the day by sharing the work they do with entire families – not just the individual clients. They illustrated some serious points, while lightening the mood perfectly, by highlighting common ‘bear traps’ that can befall physios, occupational therapists and families.

We thoroughly enjoyed the day, learned a great deal and felt inspired by the excellent work being done to support individuals and families living with Cerebral Palsy. Our thanks once again to the Brain Injury Group for inviting us to sponsor and speak at this event.