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.
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.
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.
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.
Dementia care – how to use storyboards
Dementia Carers Count look at how this valuable creative tool can be used at home
Do you know that people living with dementia often process visual stories and information better than verbal communication?
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships. Visual aids such as storyboards can help maintain mental wellbeing for both the person with dementia and for the carer.
Sue Hinds, head of services at Dementia Carers Count, takes us through a range of techniques that carers can adopt (or adapt).
When and why visual support might be useful
There may be times when you need to support a person with dementia in attending events which are important to them. This might include appointments with the GP or other services, family events, shopping excursions, planning a trip and opportunities to engage in hobbies and pastimes.
We know that people with dementia often have challenges in both understanding information provided to them and/or retaining the information for long enough for it to be meaningful.
Carers tell us that a range of situations and emotions can arise. This could include the person with dementia refusing to go because they genuinely believe they were never told about it. Anxiety about where they are going, confusion, disorientation, agitation, distress, tearfulness, a sense of unease, and many more emotions can all emerge.
These situations can also provoke a range of emotions for you as a carer including stress, worry, fear, frustration, and anger.
Things we know:
- Providing information in bitesize chunks can help a person with dementia.
- Providing visual reminders can help.
- Visual information is often better understood than verbal information.
- Visual information can be referred back too, spoken descriptions (unless recorded are fleeting).
- Step-by-step instructions help.
- Visual formats can help a person express their concerns more clearly.
What are story boards?
Storyboards are one way to help support a person to understand, remember and engage fully with a meaningful visit, event or routine either inside or outside the home. They can capture key elements and stages of an event with images which can help the person to understand the event and will help to describe the actions at each stage.
By creating a storyboard, it can help you to identify all the stages and can help you think about what situations might arise, and can support a person with dementia to express areas which give them concerns.
Often storyboards can then be adapted or used again for other events.
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships, and a storyboard can help maintain mental well being for both the person with dementia and the carer.
They provide a way to cope, help to maintain relationships and provide a new way of coping with challenges – providing a new way of thinking, behaving and interacting together even when things are tough.
How to create a storyboard
Generally, a story board can look how you want it to look, but they should not have too much information on a page as this can be overwhelming.
You may wish to create a storyboard on one page, or a storybook where you flick from one page to the next, or even a storymat where you can add, remove drop things down into a ‘we are here now’ section.
Follow the steps:
Think about the task e.g. Going to the doctors, and then think of all the steps which will happen (this is unique to your own routine):
- We need to get up and out of bed at 8am
- We will go downstairs
- We will have breakfast
- We will go to the bathroom and have a wash
- Clean teeth
- Get dressed
- Go to the car
- Travel to the surgery
- Wait in the waiting room
- Go in to see the doctor and talk to the doctor
- Say goodbye and leave the surgery
- Get back in the car and drive home
- Arrive home
- Sit down in the kitchen for a cup of tea and a cake
Ideas of things you can use to help you
There are lots of symbols and resources which you can purchase to help with this, but a good tip is to also take photos within your own home and when you are out and about with the people and places you visit. This will help you to tell the story with as many familiar pictures as possible.
It’s also often worth taking photos during a familiar event so these can be used in the future. However, if you need some symbols there are various sites you can purchase them from and I have listed a couple below.
The creative visual aids website also gives a wonderful explanation of how visual aids can be used to support children, but the principles are exactly the same. The video below talks about the use of storyboards with children and I am currently in discussion with Gina regarding storyboards for people with dementia.
Talking Mats is another incredibly useful resource for supporting conversations, with videos and case studies of how visual aids can help a person with dementia in conversation and day to day life.
Good luck creating one, and have fun – we would love to hear from you with photos, descriptions and stories of how and when you use them. Perhaps you could also inform other carers through our forum: Virtual Carers Centre | Dementia Carers Count
Supporting mental and physical needs in complex dementia
St Andrew’s Healthcare look at the importance of meeting the needs of this client group
In supporting the mental and physical healthcare needs of people living with complex dementia, specialist expert support is vital to achieving the best possible quality of life.
St Andrew’s Healthcare is renowned for its work in this area and for its support of people and their families. Based within its Northampton site, the St Andrew’s neuropsychiatry service supports people with the most complex neuropsychiatric needs.
The service extends across Kemsley, the hospital’s brain injury unit, which has pioneered specialist neurobehavioural care since it opened over 40 years ago, and Lowther dementia hub, a bespoke environment opened in 2020 that is designed to meet the needs of people living with complex dementia and other progressive neurological conditions.
Working with older people within a neuropsychiatric service requires a range of specialisms. Here, we meet two of the multi-disciplinary team at St Andrew’s as they explain the importance of meeting the mental health, but also the physical health, needs of this particular patient cohort.
Muthusamy Natarajan, consultant forensic psychiatrist
My name is Muthusamy Natarajan, I’m a consultant forensic psychiatrist and also clinical director for the neuropsychiatry service at St Andrew’s Healthcare.
How do you approach the care and support of older people in a neuropsychiatric service?
It’s important when working with and supporting older adults with mental health problems to consider how their organic and functional illnesses intertwine and how we progress them in their pathway at St Andrew’s and onward into the community. Connections with the patient’s family are also key so we also need to make sure we work to maintain those links whilst offering support to family members too.
We have a lot of our patients who are living with dementia and obviously communication with those who are caring for them is a tricky challenge sometimes and making sure that their voices are heard. We have multiple methods do that including our advocacy services, but also our staff are really experienced and skilled in making sure that the patient’s voice is heard.
How do we support people living with dementia and complex needs?
In 2020, we opened the Lowther village. The Lowther village was very much a critical part of our ability to deliver the best care for patients who are living with dementia and other complex progressive neurological conditions such as Huntington’s disease.
The dementia village concept comes from the Netherlands, where the key area of focus is making sure that patients are able to experience familiar activities throughout their journey with dementia and that they are able to link with the community, and that’s what we try to do. Our aim is to make sure that patients have the least possibility of feeling like they are in an inpatient setting and that includes people who are on Mental Health Act sections and Deprivation of Liberty Safeguards (DoLS).
What key interventions do you use when working with people living with dementia?
When somebody comes to us, we carry out a comprehensive multidisciplinary assessment that is the basis of their care and treatment.
An individual might require specific psychological therapies and that may include things like reminiscence therapy, individual sessions to look at what their actual cognitive impairment is meaning for them on a day to day basis and we will use tools such as life story work.
One of the key things we will look at when an individual comes to us is what activities and supports are going to help them through their journey, and that will include activities within the unit, but it also may include activities within our grounds and also further afield in the community.
The third intervention is obviously in terms of our medical support, and we have a full complement of doctors, a responsible clinician, a geriatrician who works alongside us and also our specialty doctors and the medical team who look at the treatments we’re offering and make sure that is the most holistic approach to that individual’s care.
Having worked across a number of organisations what do you think makes St Andrew’s different?
What makes St Andrew’s different is that the culture and the organisation are geared to deliver care to very complex patients who come to us. The challenge to us is that we need to be able to demonstrate we can meet the complex care needs of our patients and ensure their journey is delivered in the best possible way and that we maintain our links with the carers and family for that patient. St Andrew’s does that incredibly well, and it does it holistically and in some ways, effortlessly. So building on that is a key area I think within the neuropsychiatry division and also within the charity as a whole.
Parul Shah, consultant geriatrician
My name is Parul Shah, I’m a consultant geriatrician, and I joined the St Andrew’s neuropsychiatry multi-disciplinary team in February 2021.
As a consultant geriatrician, what is your role within the neuropsychiatry team at St Andrew’s?
My role as a consultant geriatrician within the team is to pick up on the subtleties of medical issues amongst our older adult cohort of patients and implement proactive management of their conditions so that patients don’t deteriorate any further with their physical health, reducing visits to acute hospitals and improving their safety whilst they are in our care here.
What are some of the key areas of focus for you with St Andrew’s neuropsychiatric service?
One of my key areas of focus is to improve the overall strategy for older people’s health within the neuropsychiatry service with a particular emphasis on identifying frailty. Older people are often living with multiple conditions, and as they physically decline people become frailer, if we identify this and are aware of increasing frailty we can put approaches into practice such as exercise programmes and lifestyle changes that may prevent people’s physical health deteriorating.
Sometimes our patients exhibit very advanced stages of frailty, and then we need to recognise that they may be approaching end of life and that maintaining their quality of life is of prime importance, rather than necessarily focusing on physical health care interventions.
So I think that’s one of my main aims; to provide comprehensive assessments to older patients and identify why they’re getting frailer. If there are no reversible factors we then need to think about how to make them more comfortable and make the right decisions for them in their best interest by involving them.
To find out more about the St Andrew’s neuropsychiatry service visit: Neuropsychiatry services » St Andrew’s Healthcare (stah.org)
The impact of stress on sleep
Dr David Lee at Sleep Unlimited offers advice on how to reduce stress and improve sleep
In response to acute stress, our body produces adrenaline, to help us with the fight or flight response.
When our body perceives there is an immediate threat to our lives, this activates our Sympathetic Nervous System (SNS) to increase our heart rate, respiratory rate, stop non-essential functions such as digestion and produce stress hormones.
During acute stress you may experience issues falling asleep and entering the restorative sleep stage as your body believes your life is in danger and so prevents you from entering a deep sleep in case you need to fight or flee during the night.
Once the threat has diminished the Parasympathetic Nervous System (PNS) is activated to lower our heart rate, respiratory rate and stop the production of stress hormones.
Evolutionarily this response was useful as we had to fight for survival if, for example, a bear was going to attack us. However, now our stressors tend to be due to relationships, financial stresses, or work-related stress. Things we are unable to run from, which can cause long term stress and SNS dominance.
Long term stress increases our cortisol production. Cortisol is normally at its highest peak in the morning to help us wake up, get out of bed, and have enough energy for the day. Levels of cortisol steadily decrease during the day, reaching its lowest point at around 10pm. This is so we are relaxed and able to fall asleep.
When cortisol levels are low, the PNS is activated during sleep, and we enter the restorative period of sleep. Cortisol levels start to slowly rise again at around 2am. If you are experiencing long-term stress, you may wake up at around 2am/3am as cortisol levels are already high.
To help reduce stress, you need to allow your body to feel safe. Here are some tips to help reduce stress and improve sleep:
- Stick to a good sleep routine but try to go to bed earlier rather than later. If we are constantly stressed the PNS system may only be dominant during times we are asleep. As PNS is only dominant until around 2am, going to bed around 10pm will provide you enough time to rest and restore.
- In times of acute stress, exercise is important, so we move our bodies as if we are acting upon the fight or flight response. However, in terms of long-term stress more restorative exercise, such as yoga, may be helpful as this activates our PNS. High-intensity exercise activates our SNS as it increases our heart rate and respiratory rate, so try to incorporate restorative exercises into your routine as well. Remember exercise outside in the morning is better as it increases melatonin production for release later in the day to help you fall asleep.
- Try deep belly breathing when you are feeling stressed to helps you to feel relaxed. When we are stressed, we tend to breathe short quick breaths from our chest instead of long deep breaths from our stomach.
- Allocate time during the day to write down your worries and your to-do list as this will prevent you from worrying about them as you try to fall asleep.
- Try to reduce caffeine intake. When we do not enter the restorative stage of sleep, we can wake up feeling unrefreshed and groggy, this can cause us to make a cup of coffee to increase our energy. However, caffeine also increases cortisol so try to reduce the amount of caffeine you consume, at least try to stop caffeine intake after lunchtime as this can increase difficulty in falling asleep. If you improve your sleep practices you are likely to feel refreshed in the morning, making it easier to reduce your caffeine intake.
- Avoiding screens and working in the 2 hours before bed allows us to wind down and help us to switch from SNS to PNS. If we engage in work or see something on social media that causes our stress levels to rise, then this may cause us difficulty falling asleep.
* Dr David Lee BSc PhD CertEd CPsychol AFBPsS CSci is clinical director at Sleep Unlimited
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