Cerebral Palsy

Coronavirus (COVID-19) and Cerebral Palsy


We have put together the following advice for people with cerebral palsy and those that support them to answer key questions about coronavirus and CP. 

Please also check the latest information on how Bobath Scotland is currently providing support and information to the CP community.

Updated 27th March 2020

Will having cerebral palsy put me more at risk of getting infected with coronavirus?

On Monday 16 March the UK government announced a package of measures, advising those who are at increased risk of severe illness because of COVID-19 to be particularly stringent in following social distancing measures.

https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults

Cerebral palsy is named as a condition in this category. 

This wider at risk group, who broadly speaking comprise the criteria of adults eligible for an annual flu vaccine for medical reasons, should be contacted by a letter from the Chief Medical Officer to ask that they take steps to reduce their social interactions in order to reduce the transmission of coronavirus.

Simply 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. 

What does this mean?

Measures that people with cerebral palsy should take include:

  1. Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
  2. follow basic hygiene precautions, such as washing your hands frequently, avoid touching your face and covering your nose and mouth with a tissue when coughing or sneezing
  3. Avoid non-essential use of public transport when possible
  4. Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information
  5. Avoid large and small gatherings in public spaces, noting that pubs, restaurants, leisure centres and similar venues are currently shut as infections spread easily in closed spaces where people gather together.
  6. Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
  7. Use telephone or online services to contact your GP or other essential services

 

Advice for Carers and support workers who come to your home

Any essential carers or visitors who support you with your everyday needs can continue to visit, unless they have any of the symptoms of coronavirus. All visitors should wash their hands with soap and water for 20 seconds when they arrive, before and after preparing food and frequently during their visit.

It is also a good idea to speak to your carers about what happens if one of them becomes unwell. If you need help with care but you’re not sure who to contact please visit: https://careinfoscotland.scot/topics/how-to-get-care-services

The Scottish Government has produced guidance for unpaid carers: https://www.gov.scot/publications/coronavirus-covid-19-advice-for-unpaid-carers-march-2020/

 

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! 

Carers Scotland and the Carers’ Trust Scotland have been involved in creating this helpful guidance for carers, including your rights and how to create a contingency plan in case you or someone else in your household becomes unwell.

Should I be Going to Work?

Employees from defined vulnerable groups in which cerebral palsy is included, should be strongly advised and supported to stay at home and work from there if possible.

Employers and employees should discuss their working arrangements, and employers should take every possible step to facilitate their employees working from home, including providing suitable IT and equipment to enable remote working.

Sometimes this will not be possible, as not everyone can work from home. Certain jobs require people to travel to, from and for their work – for instance if they operate machinery, work in construction or manufacturing, or are delivering front line services.

If you cannot work from home then you can still travel for work purposes, provided you are not showing coronavirus symptoms and neither you nor any of your household are self-isolating. This is consistent with advice from the Chief Medical Officer.

Employers who have people in their offices or onsite should ensure that employees are able to follow Public Health guidelines including, where possible, maintaining a 2 metre distance from others, and washing their hands with soap and water often for at least 20 seconds (or using hand sanitiser gel if soap and water is not available).

Employers are bound to follow Health and Safety at work guidance on safe working practices: https://www.hse.gov.uk/news/coronavirus.htm  Employers are still responsible for ensuring that the work environment is safe and in line with current safe social distancing rules etc.  If this is not the case, then employers are breaching health and safety regulations. 

Further advice for employers can be found here: https://www.gov.uk/government/publications/guidance-to-employers-and-businesses-about-covid-19/guidance-for-employers-and-businesses-on-coronavirus-covid-19

Taking Routine Medicines 

The government is helping pharmacies to deliver prescriptions, prioritising those who are not currently able to leave the house. Prescriptions will continue to cover the same length of time as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:

  • Asking someone who can pick up your prescription from the local pharmacy, and leave them at your door for you (this is the best option, if possible).
  • Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) to deliver it to you or they may deliver it themselves.
  • If you get medicines or equipment from your hospital care team, they will make arrangements to have them delivered to you.

 

Planned hospital appointments 

NHS Scotland has written to your hospital to ask them to review any ongoing care that you have with them. It is possible that some clinics and appointments will be cancelled or postponed. Your hospital or clinic will contact you by phone or letter if any changes need to be made to your care or treatment. Otherwise you should assume your care or treatment is taking place as planned. Please contact your hospital or clinic directly if you have any questions about a specific appointment or the care you usually get from hospital.

Urgent medical attention

If you have an urgent medical question relating to your existing medical condition (ie not Coronavirus), or the condition of the person you are caring for please contact your GP practice, or your specialist hospital care team, directly. Where possible, you will be supported by phone or online. If your doctor decides you need to be seen in person, we will arrange to visit you in your home, or where necessary, see you in a hospital.

To help the NHS provide you with the best care if you need to go to hospital as a result of catching coronavirus, we ask that you have ready a single hospital bag. This should include your emergency contact, a list of the medications you take (including dose and frequency), any information on planned appointments and essential things you would need for an overnight stay (snacks, pyjamas, toothbrush, medication etc). If you have an anticipatory care plan, please include that.

 

What if I get infected with coronavirus?

It is important that everyone keeps up-to-date with NHS Inform's guidance on coronavirus in order to protect themselves but also those they come into contact with. Here are some additional suggestions that may help: 

When resting: Try propping yourselves with extra pillows to keep you comfortable. V-Cushions can be very useful. Re-position yourselves regularly – change sides. 

Hydration and nutrition: Drink plenty of fluids and try to maintain a healthy diet – nutrition is important for your body to manage illness. 

Face masks: Much has been written regarding the use or non-use of face masks. Unless using a highly specialised mask it is unlikely masks will protect you from the virus. However using a facemask may be useful to prevent spread of the virus if you have it and you find it difficult to cover your mouth or respond quick enough to catch a cough or sneeze. Links regarding the use of masks can be found at:

 

Remember, while we are reducing face to face contact and support we are still working and you can contact us with any questions by phone or email and we will do our best to help.  Please keep in touch with our website and social media channels as we look at providing consultations either virtually or by telephone.

 

How do I try to keep well at this time?

It is important that everyone keeps up-to-date with NHS Inform's guidance on coronavirus in order to protect themselves but also those they come into contact with. Here are some other general ideas for keeping well: 

Sleep: Sleeping has been shown to restore our immune system and help us feel more mentally able to deal with challenges that we face.

Nutrition: Maintain a healthy diet with lots of fruit and vegetables. Vitamin C and Zinc play an important role in this. Our body can’t store vitamin C so it is good to ensure our diets regularly include fruit and veg that are vitamin C rich. 

Water: Keeping well hydrated helps keep secretions moist and therefore easier to clear (cough).  This is especially important if you are already prone to respiratory problems.

Keeping active: Whether in a wheelchair or mobile – keeping physically active is a good way of looking after our mental and physical health.  Aerobic exercise in particular is beneficial to provoke deep breathing.  We have pulled together some ideas and resources to get you started.  Even if you don’t have respiratory difficulties you may find the following suggestions useful:

Keeping active: Managing Posture - Where practical – aim to change position regularly. This could mean getting out of your chair e.g. standing frame, side lying, sitting up, rolling, moving position within your chair. Continue with any recommended physiotherapy programme you have been provided with. This is very important if you have a chest-physio programme as it can play an important part in helping to keep your chest clear.

Keeping active: working out - See this resource on activities for children who use wheelchairs

Keeping active: Take a moment to breathe well - Practicing deep breathing and exercise to stretch your chest will help you to expand your lungs capacity. This is very good strategy to be able cough productively and it will help you get better sooner. Try the following exercises – don’t worry about getting into the exact pose at the expense of holding your breath. Work within your abilities – the main thing to focus on is getting deep breaths that will expand your chest. (You may need a carer to assist if unable to assume positions yourself.)

  • Lie comfortably on your back - if your lower back arches a lot, place one or two pillows under your knees.
  • Your parent or carer can lift your arms above your head as far as you feel comfortable and possibly prop your arms with additional pillows for support. Once positioned comfortably, focus on taking slow deep breaths and even slower releasing your breath.
  • Practice for few minutes and then turn on your side and bring on arm up to your ear and breath in the same slow manner into your side for few minutes. Repeat on the other side too.
  • Other breathing exercises: Bubbles - blow bubbles to help with respiratory function and breathing control try to catch them with their fingers; Windmills; Blow on 1 ply tissue; Yoga for wheelchair users

 

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! 

Carers Scotland and the Carers’ Trust Scotland have been involved in creating this helpful guidance for carers, including your rights and how to create a contingency plan in case you or someone else in your household becomes unwell.

Contact Us

If you have an enquiry about coronavirus and cerebral palsy, please contact us and we will do our best to help or signpost you.

Additional references 

Association of British Neurologists - Guidance on COVID-19 for people with neurological conditions, their doctors and carers

Neurological Alliance of Scotland - Coronavirus - information for people with neurological conditions and carers

CP Adult Cerebral Palsy Hub - Coronavirus and cerebral palsy

Carers UK - Coronavirus guidance

Forbes – Five things to know about coronavirus and people with disabilities

Nursing Times – Improving hand hygiene after neurological injury