We truly appreciate that parents are seeking reassurance at the moment and that this is a truly worrying time. There is a sense of confusion about the current coronavirus (COVID-19) situation with advice seeming to change on a day to day basis. The facts about how COVID 19 may specifically affect our children and young people are not as clear as we would like them to be, largely because this is a new virus and we don’t as yet have firm scientific evidence. Please be assured we are doing everything in our power to find information specifically for those we support. We are working closely with UK specialist centres and keeping up to date on developments.
The latest Government guidance advises those who are at increased risk of severe illness from coronavirus to be particularly stringent in fully following social distancing measures. Please read and follow all of the detailed guidance in the following link. As far as we are concerned all the children and young people we exist to support would fall into this category.
While the guidance does not specifically mention children/young people, it states that under 70s with an underlying health condition including those with a chronic liver disease and people who have received an organ transplant and those taking ongoing immunosuppression medication.
People in these groups are advised to avoid social mixing in order to minimise their risk of contracting the virus. The advice also states that there will be additional advice issued by NHS England next week directly to patients who fall into a number of groups, which include those who have received an organ transplant and remain on ongoing immunosuppression medication
Stringent social distancing measures advised include:
- Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough
- Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible
- Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information
- Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs
- Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media
- Use telephone or online services to contact your GP or other essential services
Everyone should be trying to follow these measures. Hand hygiene remains an imperative
For most parents, their biggest question is ‘Should my child go to school or college?’. If the above advice issued on 16th March is followed, the answer would be ‘no’. No-one knows your child’s situation better than you. The final decision is yours, we can only give you the most current advice as issued by Public Health England as linked to above.
If you do decide to remove your child from school or nursery, it is important that you have a discussion with your child’s school regarding this before taking them out in order to develop a plan for missed lessons.
We have been advised that hospitals and transplant units are considering ways to limit hospital attendances for patients where appropriate, such as:
- rescheduling non urgent out-patient appointments
- virtual or telemedicine appointments
- home delivery of immunosuppression
You will be notified directly by your hospital team if this occurs.
If a young person or child is experiencing symptoms of COVID 19 use the 111 online service. If symptoms are mild without a fever over 37.8 you can follow the advice about self-isolating at home. Any deterioration in condition should be referred through NHS 111. Immunosuppressed children with a fever over 37.8 will need review by the clinical team.
It is important that all of us follow the advice being given by Public Health England. There are some pieces of encouraging news for our patient group coming from other countries affected by COVID 19 who are slightly ahead and have seen more cases than we have, but it is very early days.
This includes older adults appearing to be more severely at risk from the new coronavirus; young people, children especially, have made up very few of the confirmed cases so far. However, it is still important for children and young adults with a liver condition to be vigilant due to the complications that can occur if they contract the virus.
There are also some suggestion that the disease course in immunosuppressed patients isn’t necessarily more complex and that the risk for patients receiving immunosuppression and for liver transplant recipients does not seem to be increased.
While these reports are encouraging, it is important to note that greater evidence is needed. Furthermore, it is vital that families continue to follow all UK government guidance and measures and crucially, children and young people need to keep taking their immunosuppression and other medications as prescribed unless told otherwise by their medical teams. It is also important that you and your child have enough medication to last the month in case of the need for self -isolation so make sure your repeat prescriptions are up to date.
Please use the following link for the UK government advice on Corona Virus. It will have the most up to date information. https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response
We will keep you all updated with any further communications we receive from our contacts within the UK.
Throughout the next few weeks, we will be providing resources, tips and advice on coping with social distancing and isolation for families, children and young people. We are here for you so please do get in touch. We want to help, however, the only direct guidance we can give is as stated.