Are you the parent or carer of a child or young person with cerebral palsy, another similar sensory motor disorder, or global developmental delay and you live in the UK, if so Pace needs you!
Pace, a longstanding partner of Action Cerebral palsy is looking for your help and support and shaping the future for children and you people with Cerebral Palsy.
Please take a look below
Cerebral Palsy and Covid-19
As the Covid-19 Pandemic continues here is some information about Covid19 and Cerebral Palsy (reproduced from Cerebral Palsy Scotland)
Will having cerebral palsy put me more at risk of getting infected with coronavirus?
NHS Inform's guidance on social distancing sets out the group of people who are at “increased risk of severe illness from coronavirus”. This includes people with chronic neurological conditions and cerebral palsy.
Having cerebral palsy does not necessarily put someone at higher risk of getting infected with coronavirus. However if you have an associated condition or treatment that affects your immune or respiratory system, it may affect your ability to deal with the virus if you were to get it, and therefore puts you at increased risk. For example, some people with cerebral palsy have specific respiratory conditions, asthma, or have severe postural difficulties that affect their ability to cough well.
Government advice says that if you would normally qualify for an NHS flu vaccination because of your condition, you should consider that you are at increased risk. The Scottish Government has said that people in this category will be contacted over the next few days with specific advice.
The Association of British Neurologists issued Guidance on COVID-19 for people with neurological conditions, their doctors and carers on 22 March. They recommend social distancing for all people with any neurological condition, their carers and family. They estimate the risk of COVID-19 for people with cerebral palsy as "low", but also state that "people with a neurological condition with low or moderate risk might be considered high risk if they have additional risk associated with other conditions affecting the lungs, heart, kidneys etc."
It is also important to bear in mind that the implications of Covid-19 may extend
beyond the risks from the disease itself e.g.
Disruption to services including access to medication/hygiene products
Changes in who is available to help with daily tasks etc., particularly if those who typically assist become unwell
Unable to self-isolate due to need for assistance from other people for daily tasks such as self-care and domestic activities
Government advice says that people who are at increased risk should stay at home as much as possible and significantly reduce unnecessary social contact until further notice.
Is there anything else I should be preparing/thinking about?
Equipment: If you/your child typically use supportive equipment you may want to check about making arrangements for this to be accessible if circumstances change e.g. arranging for standers/walkers etc to be transported home before schools are closed indefinitely.
Wheelchair/accessories hygiene: Pay attention to regularly cleaning wheelchair handles, armrests, breaks of the wheelchair and clips of the harness/hip belt/feet straps. These components are regularly touched and serve as risk areas for contamination.
AAC users: If you are responsible for helping someone manage their communication system there are some specific things you should consider:
Ensure whatever (high & low tech) communication systems are being used, are kept current to reflect the vocabulary that someone may want/need to access. Any new additions/changes should be made known to everyone involved and the vocabulary itself should be easily accessible i.e. not embedded deep so lots of navigation is required.
Ensure you wash your hands before you handle the communication aids and their bags (e.g. before you mount/programme/switch it on/off).
Ensure communication aids and access devices such as touch-screens, switches, styli, joysticks etc are regularly washed and dried thoroughly. You may need to check manufacturers recommendations for this.
Don’t forget to regularly wash the mounting brackets and edges of devices – many people with cerebral palsy stabilise themselves on these and so it is important that they are kept clean.
If I can’t wash my own hands what do I need to tell those who care for me to support me to do?
Integral to government advice is the reminder to regularly and thoroughly wash our hands and not touch our faces. Here we take the time to consider whether there are any specific implications for people who have cerebral palsy.
Hand washing: For some people with cerebral palsy, this task can pose some challenges if they experience spasticity through one or both upper limb – usually resulting in bending at the elbow and wrist, with a fisted hand:
Unilateral Cerebral Palsy (UCP) - People with UCP/Hemiplegia are likely to be able to manage washing their own hands. Where the hand is particularly tight it is very important to ensure that every ‘nook, cranny and crease’ is reached and dried.
Bilateral Cerebral Palsy (BCP) - Many people with a moderate to severe form of BCP (e.g. Severe Spastic Quadriplegia) are dependent on others to wash their hands. It goes without saying that any carers should first ensure they have washed their own hands (and where appropriate wear gloves) before assisting someone else. It is important to remember that good in-hand hygiene is important at any time and not only in the current climate (e.g. for comfort and feeling fresh, to prevent skin breakdown and risk of in-hand infection).
Avoiding touching our faces: While it is important to get hand-washing nailed, it is also worth bearing in mind that many people with a moderate to severe form of cerebral palsy may be unable to bring their hands to their face. The positive aspect of this is that they are less likely to be touching potentially infected surfaces and spreading this to their eyes/mouth/nose. However, it also means that they will be dependent on others to wash their face or to help them manage coughs, sneezes, tears and runny noses.
Practical tips and ideas for those supporting people with cerebral palsy with hand washing
Preparation: Ensure your own hands are thoroughly washed and dried first. Where appropriate wear gloves e.g. if this is part of your regular routine/protocol. Check if there are already any individualised recommendations regarding positioning and handling of the person’s hand/arm.
Washing: Do not force hands open or force fingers/thumb to move. Use slow, gentle-but-firm handling. If possible immerse the hand in a basin of warm soapy water. Gently use your thumb to work into the palm – it can help to start at one end (eg at pinkie finger) and use small rotating movements to ease into the fist.
Handling ideas: Working for arms away from body to help loosen tightness.
Other: Involve the person with CP in the process: check they are ready to start, check if they have a preference over which hand to do first. Drawing attention to the hands can often result in the muscle tone increasing. Distraction can help – chat about other things!
Action Cerebral palsy Launches Variations in Care update report
On 24th February 2020 Action Cerebral Palsy launched our Variations in Care update report at the House of Lords.
This report is the result of Freedom of information requests made in 2018 and follows up on the original "Variations in Care" report completed in 2016, which highlighted large variations in the level of care and provision for children and young people with Cerebral Palsy in the UK.
This update report shows some progress since the original 2016 report however it also highlights significant work still to be done to ensure the best care and education for children and young people with Cerebral Palsy throughout the UK
The update report is available to view here
The text of the speech given by Action Cerebral Palsy Chief Executive Amanda Richardson can be viewed here
Dr. Helen Hunt mother of Wilf who has Cerebral Palsy also spoke at the launch about her and her family's experience of navigating the health and education systems to allow Wilf to reach his potential. The text of the speech is here
William Little Foundation; Cerebral palsy: causes and prevention A study of current knowledge and research funding
Action Cerebral Palsy welcomes an important new report on cerebral palsy and its causes and prevention, launched by the William Little Foundation on Thursday 24th September 2020.
Re4ad the report here