We have put together the following advice to answer some key questions about coronavirus and CP.
Please visit www.gov.uk/coronavirus for UK Government advice and updates.
What is coronavirus?
Coronavirus (COVID-19) is a new illness that can affect lungs and airways. The most common symptoms of coronavirus (COVID-19) are recent onset of:
- new continuous cough and/or
- high temperature, over 37.8 degrees celsius
- a loss or change to your sense of smell or taste
For most people, coronavirus (COVID-19) will be a mild illness. Some people with the virus can show flu-like symptoms, including a fever and a cough. Sadly, for a small percentage of people this can progress to severe pneumonia which can then cause breathing difficulties. The dedicated NHS 111 phone line is available for those who display symptoms, and an online tool will guide you on what action to take.
Who is at risk?
People most at risk or considered vulnerable are being contacted by the NHS. These people need to take extra steps to protect themselves and avoid getting it. This is known as "shielding". It is recommended you follow this advice for at least 12 weeks.
These people include those who:
- have had an organ transplant
- are having certain types of cancer treatment
- have blood or bone marrow cancer, such as leukaemia
- have a severe lung condition, such as cystic fibrosis or severe asthma
- have a condition or are taking medicine that makes them much more likely to get infections
- are pregnant and have a serious heart condition
Will having CP put me more at risk of getting infected with coronavirus?
The UK Government’s guidance on social distancing, published on 16 March, sets out the group of people deemed to be at “increased risk of severe illness from coronavirus”. This includes people with chronic neurological conditions and CP.
Having CP 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 CP have specific respiratory conditions, asthma, or have severe postural difficulties that affect their ability to cough well. Some of those associated conditions are considered higher risk conditions and preventative steps are advised to be taken. The advice for people with CP is to stay at home (shielding).
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. It is important to bear in mind that the implications of the coronavirus 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
How can someone with CP protect themselves from coronavirus?
NHS advice is - simply put - by staying at home and practising shielding. Significantly reduce unnecessary social contact until further notice, and carers/family members should also take extra precautions to minimise exposure.
General advice includes:
- Wash your hands with soap and water often – do this for at least 20 seconds
- Use hand sanitizer gel if soap and water are not available
- Wash your hands as soon as you get back home
- Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
- Put used tissues in the bin immediately and wash your hands afterwards
- Do not touch your eyes, nose or mouth if your hands are not clean
I care for someone with CP/I have a carer. What precautions do we need to take?
Vulnerable people are being contacted by the NHS. If a person you care for has received this letter, the instructions are very clear. They must stay at home at all times and avoid all face-to-face contact for at least 12 weeks, except from you as their carer and healthcare workers continuing to provide essential medical care.
Carers need to take extra measures. Advice has been issued specifically for professional carers, available on Carers UK website. In the first instance, it is advisable to protect yourself and others by following the hygiene and infection control guidelines illustrated on the BBC's video and included under How to avoid catching or spreading coronavirus on the NHS website. Limit your movements and travel for essential purposes only.
The Government and World Health Organisation has set movement limitations for everyone not considered in an essential job role, to only leave their home for a limited set of purposes. If you are a family member caring for someone with CP, this will help you avoid bringing the virus into the home. Consider travel only for:
- shopping for basic necessities, as infrequently as possible
- one form of exercise a day – for example a run, walk, or cycle – alone or with members of your household
- any medical need, to provide care or to help a vulnerable person
- travelling to and from work, but only where this is absolutely necessary and cannot be done from home
Practice robust hand washing every time you re-enter the home from travelling outside, before you touch anyone or any surfaces in the home. The virus can live on some surfaces after contact from 3 to 72 hours depending on porous surface level, so protect others by washing your hands immediately when you return home. Avoid disseminating your saliva to someone (e.g. via sneezing) by covering your mouth and nose when necessary (e.g. with a tissue) and avoiding hand contact (e.g. hand shaking) and avoiding touching your face or the face of the person you care for.
If you are caring for someone who can not wash their own hands, advice includes:
- 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 (e.g. at pinkie finger) and use small rotating movements to ease into the fist.
- Handling a person: 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!
Extra considerations for caring with someone with CP:
- 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. Any carers should first ensure they have washed their own hands (and where appropriate wear gloves) before assisting someone else.
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.
- Before putting on a mask, clean hands with alcohol-based hand rub or soap and water.
- Cover mouth and nose with mask and make sure there are no gaps between your face and the mask.
- Avoid touching the mask while using it; if you do, clean your hands with alcohol-based hand rub or soap and water.
- Replace the mask with a new one as soon as it is damp and do not re-use single-use masks.
- To remove the mask: remove it from behind (do not touch the front of mask); discard immediately in a closed bin; clean hands with alcohol-based hand rub or soap and water.
Links regarding the use of masks can be found at:
- World Health Organisation – When and how to use masks
- A video showing how homemade masks can be made if you know someone who is handy with a sewing machine. These are an alternative to disposables and can be washed at hot temperatures.
- Equipment: If you/your child typically use supportive equipment, you should check to make required arrangements for standers/walkers etc to be transported home.
- Wheelchair/accessories hygiene: Make sure you are frequently 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. Check manufacturers recommendations for how to clean.
- Don’t forget to regularly wash mounting brackets and edges of devices – many people with cerebral palsy stabilize themselves on these and so it is important that they are kept clean.
How can I look after my/someone with CP general health whilst isolating?
First, by reducing unnecessary contact. Helpful tips to reduce unnecessary social contact include:
- use a telephone or online services to contact your GP or other essential services instead of going out to the surgery
- if you need food or medicine, ask a friend, neighbour or delivery driver to bring them and leave them on your doorstep for you to collect.
- you can go outside to be in the open air. If possible, keep a distance of around 2 metres (6 feet) between you and other people.
- keep connected with family, friends and your community through phone calls, online forums and social media.
Recommendations to keep well during this time include:
- Sleep: Sleeping has been shown to restore our immune system and allows us to mentally prepare.
- Nutrition: Maintaining a healthy diet is key to good health. 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 include it.
- 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.
- Managing posture: 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 aid in keeping your chest clear.
- Breathing: Practicing deep breathing exercises allows your chest to stretch, in turn expanding lung capacity and allowing you to get well sooner.
More tips for those with restricted movements:
- 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.
What if I get infected with coronavirus?
It is important that everyone keeps up-to-date with UK national guidance on coronavirus in order to protect themselves but also those they come into contact with.
The most common symptoms of coronavirus (COVID-19) are recent onset of a new continuous cough and/or high temperature. If you have these symptoms, however mild, stay at home and:
- Do not leave your house for 7 days from when your symptoms started (if you live alone) and your symptoms do not get worse (if they do, contact NHS 111). If you live with people, isolate yourself from them to avoid spreading the virus.
- Do not leave your house for 14 days if you live with someone who has symptoms, in case you become affected. NHS advice is that you do not need to call NHS 111 to go into self-isolation if your symptoms are mild and you start to feel better.
Your body’s immune system will be working to remove the virus. To help yourself stay well while you're at home:
- Rest and sleep.
- Drink plenty of water to avoid dehydration – drink enough so your pee is light yellow and clear.
- Take paracetamol to lower your temperature.
- 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.
The majority of people experience mild symptom and get better/symptoms improve within the 7 days. If your symptoms worsen during home isolation (for example if you develop shortness of breath) use the NHS 111 coronavirus service. If you’re not in immediate danger but you feel you cannot cope with your symptoms at home, your condition gets worse, or your symptoms do not get better after 7 days, use the NHS 111 coronavirus service. If you do not have internet access, you should call NHS 111.
For a medical emergency dial 999. If it is an emergency and you think you may need an ambulance, call 999 and make sure to mention that you have symptoms of COVID-19.
You should also remember to avoid spreading the virus.
Nursing Times – Improving hand hygiene after neurological injury
UK Government Guidance for Households: https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance
UK Government general information: https://www.gov.uk/government/collections/coronavirus-covid-19-list-of-guidance
World Health Organisation advice: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public