News

Coronavirus

Published: Thu, 2nd April 2020, 12:40:00 PM
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We understand that many people born with OA/TOF (and families of those born with the conditions) are concerned about the fast-evolving situation caused by the coronavirus.

(Please note:This page is updated regularly as new information becomes available.  Please visit it often for the latest advice.  The most recent updates include: 'Is it safe to take my child to A&E with non-Covid related problems?', 'Helpful OA/TOF resources', 'Why haven't I received a letter from the NHS', 'Where do I stand with my employer', 'How will I get tested', 'Tips for parents of OA/TOF children', 'A&E and non-COVID related problems' and some information added to the 'Are TOFs at increased risk' section.)

What is COVID-19? 

COVID-19 is the new respiratory illness which the coronavirus causes, and it has now been described by the World Health Organisation as a pandemic. 

Symptoms of COVID-19 will be mild for many, but are most severe in those with existing lung conditions.  There is huge media coverage of the pandemic, but we advise looking at these trusted websites for the facts.  In the UK, please visit the NHS website for up-to-date information.  Or visit:

Are TOFs at increased risk?

Whilst many OA/TOF patients are used to coping with respiratory illness, they have an increased risk from all types of flu and viruses, including COVID-19.  Our understanding is that younger people are generally coping well, however not all TOFs are the same and we must all exercise common sense to help protect ourselves and control spread of the virus.

Current government guidance is for all of us to STAY AT HOME and avoid non-essential contact with others.  And for those with increased risk (those over 70, with underlying conditions or pregnant) to be particularly stringent in following social distancing measures.  The government guidance for social distancing is hereAdult TOFs with a history of long-term respiratory disease should read these, as should all parents and carers.  Whilst the virus seems to have a worse effect on adults than children, we all have a duty to protect the vulnerable.

The NHS website lists those categories of people thought to be at most risk, referred to as 'shielded' or 'extremely vulnerable'.  It isn't surprising that OA/TOF patients aren't listed, many of those born with a rare disease won't be included.  And many TOF patients, who are fortunate not to have ongoing respiratory issues, or only mild respiratory symptoms will not fit into the shielded/extremely vulnerable category.  There is no 'one size fits all'.  

Prof Alyn Morice, respiratory expert from Hull, tells us ‘The advice depends very much on the status of the patient. Someone who has just a chronic dry cough but is otherwise well there is no need to take any other measures than that recommended by the government.

If people have damaged lungs, bronchiectasis or repeated "chest infections"– in reality aspiration events then I would regard them as a vulnerable group and the current advice is that they should consider self-isolation for the duration.’

The government advice for people at higher risk is available here.  General guidance and resources from the Royal College of Paediatrics and Child Health (RCPCH) is available here.

How long should we self-isolate for?

If you/your child is in the vulnerable category (see above) then you should self-isolate for the foreseeable future.  Current rules allow for one walk (or alternative form of exercise) per day, observing two metre distance from others.    

I think that I/my child fits into the 'extremely vulnerable' category.  Why haven't I received a letter from the NHS?  

Every TOF is different and advice will vary depending on the individual's history of respiratory illness, lung infections etc.  We understand that patients at very high risk are receiving written notification from the NHS to inform them of this.  Our medical colleagues tell us that many TOF children are NOT in this category. 

Consultant Paediatric Surgeon, and co-editor of The TOF book, Mr David Crabbe, tells us that 'If you don't receive a letter it is because the risk is not thought to be extremely high. That, unfortunately, doesn't mean the risk is low, far from it.'  

If you have been told that you are in the extremely vulnerable group, you should read the guidance here.  Parents and Adult TOFs may be interested in reading the letter that is being sent to patients considered at extreme risk here If you are unsure which category you or your child falls into, our advice would be to take no chances, and shield where possible.  

I'm a TOF parent.  Should I trust my instincts re worsening symptoms?

Yes.  Government advice for Covid-19 is that if you suspect you have the virus you must self-isolate (please see guidelines) and manage your symptoms at home. It has been found that children are generally coping well with the virus, however due to the complex nature of OA/TOF and VACTERL it is important to keep an eye on symptoms and follow your instincts.  If a call to 111 is required, be sure to detail past respiratory issues and surgical history.

Is it safe to take my child to A&E with non-Covid related problems?

Yes.  In some situations, if your child is significantly unwell to the point that you would take them to A&E then please do so. Speak to your GP or A&E assessment team (in the case of open access) first.  It is important to not be too afraid to take your TOF child to hospital in the same way that you usually would as waiting too long for medical help can result in a worsening condition and greater medical attention being needed.

Where possible, your child should attend scheduled procedures, however you may need to contact your surgical hospital ahead of time to make sure this is going ahead.

Where do I stand with my employer if I am especially 'vulnerable' and need to be 'shielding' as per government advice, or self-isolating?

This is an especially difficult question as every employer will have different challenges and policies in place.  Please see these links for current government advice to both employers, and employees.

The most recent government directive says that ALL workers should, where possible, be working from home.  If you are an Adult TOF or parent to a young TOF, and employed as a key worker, you may well be concerned that continuing to work puts you/your child or your colleagues in danger, and, in these instances, you should speak with your line manager.

Should we attend routine hospital appointments?

Hospitals have differing policies in relation to this, and this is something that will change in the weeks ahead.  Currently some are changing appointments to telephone consultations instead, some are postponing, and some seem to be going ahead as normal.  We want to avoid attending hospital unless necessary just now, so our advice is to ring ahead and doublecheck. 

If my TOF is generally well, isn’t bothered with respiratory issues so isn’t classed as vulnerable, can I carry on as normal?

No.  There are new UK rules in place (from 23 March) asking us all to STAY AT HOME and leave only for the following reasons:

  • Shopping for essential food and medicines
  • To provide care, or help a vulnerable person
  • Once-daily exercise such as walking or cycling (and observing the two metre distancing rule whilst doing so)
  • To travel to and from work - but only when it's absolutely impossible to work from home

Non-essential travel has been banned, and gatherings of more than two people should not take place, unless those people live together.  Shops selling non-essential goods have been shut.

We don't have any symptoms.  Do I really need to stay at home?

Yes, you do.  These measures have been put in place by the UK government to curb the spread of the virus.  These restrictions will be in place for at least three weeks and everyone must comply.  Staying at home is necessary to protect the NHS and save lives.

With the schools now shut, should I be home-schooling my child?

Many schools will have sent a programme of work home for your child.  How much over and above this that you do depends entirely on the age of your child and your own personal view of what you feel is best for your child.  As always, the most important thing is reassurance and love.  Please read our tips for parents of OA/TOF children who are juggling managing children at home from school, and much more, during these difficult times.  

Should Ibuprofen be used for managing symptoms of Covid-19?

There are conflicting views in relation to this.  You may be interested in this article that appeared in the BMJ.

Will the drug Azithromycin reduce Covid-19 symptoms in an Adult TOF?

We have consulted with Prof Morice, respiratory expert from Hull, and he says “I use a lot of azithromycin. It is a broad-spectrum antibiotic, but also has a very beneficial effect in patients with oesophageal problems since it mimics the hormone motilin – the technical term is a motilin agonist. Motilin is the hormone which controls the movement of the oesophagus which is often defective in TOF patients. This dysmotility exacerbates the TOF cough.

It is a very safe drug, but will have no activity against Covid 19.  It may well help to reduce excessive coughing if you have the virus since the TOF cough will amplify the coughing produced by the virus. Being a broad-spectrum antibiotic it will also prevent secondary infection by bacteria. So it is not an unreasonable drug to give particularly to those TOFs who chronically produce sputum and whose chests are likely to be colonised with bacteria such as Haemophilus influenzae. It will thus prevent secondary infection at the least.”

What to do if you or your child develops symptoms

Symptoms of COVID-19 are a cough, high temperature and shortness of breath that can lead to pneumonia.

Current NHS advice is for anyone (including children) with symptoms such as a new, continuous cough or a high temperature to stay at home for seven days, (if you live alone; 14 days if you live with others) even if the symptoms are mild.  After this time, if the patient is becoming more unwell or has not recovered, you should use the NHS 111 Coronavirus service on this link

Current medical advice is that the best chance of getting over the virus for those with underlying chest issues is to get your chest as healthy as possible.  For TOFs this means taking prescribed antireflux treatment regularly.  This will reduce the risk of reflux irritating the airways.  If you are prescribed inhalers, it is particularly important to take your preventative inhaler regularly (usually a brown/steroid inhaler) as this settles airway swelling and reactivity.  If you/your TOF is prescribed other chest medication such as montelukast or carbocysteine (amongst others) this should be taken regularly too.  In addition, if you do chest physio, or help your child with routine chest physio exercises, please continue these as part of your daily routine. 

If you are outside of the UK, please follow the advice issued in your country, or visit the official source of information websites that are updated regularly, as listed above. You may read more about the UK government response here.

You can help control the spread of the virus by maintaining good hygiene, such as washing hands thoroughly and regularly (as per NHS guidelines) and disposing of tissues that have been sneezed/coughed in to.  Do not touch eyes, nose or mouth if your hands are not clean.   The UK is now considered high-risk and avoiding areas of over crowding could be beneficial. Current advice is to avoid travel to known high-incident areas, or countries. 

How will I get tested if I suspect I’ve got COVID19?

From Monday 23 March the NHS is due to be communicating with people who are considered to be at high risk. You will be given specific advice about what to do if you are in the ‘shielding’ category.  

If I am self isolating, should my family be doing so also?

It depends.  If you are self-isolating because you have symptoms of COVID-19, then yes.  If you are self-isolating because you are in the high, or very-high risk category, then close family members should be taking extra precautions and practicing enhanced social distancing to keep you safe.  Where possible, sleep in a separate room, and use separate bathroom facilities.  Follow the NHS guidance outlined here.

I'm an Adult TOF and a key worker.  I'm particularly conscious of my TOF cough.  Can you help? 

We can't post any badges out currently but you can print one from our resources here and here or use one of our TOF cards.  Scroll down for more helpful resources availabe from TOFS.  

Look after yourself

Whilst social distancing or in self-isolation it is important to take time to consider your own mental health. Looking after your own emotional and physical well being can help to make this period feel less stressful and help you to develop your own coping mechanisms.

Try to maintain regular routines as much as possible, this will help you and your family maintain a sense of normality. You can keep contact with friends and loved ones by using social media and video calls, these are great ways to give yourself something in your day to really look forward to. Encourage children to play, learn and explore through a range of creative activities in order to give them a positive outcome during this time and have a focus for their own worries.

Taking regular exercise can have a wealth of positive effects on your mental health, if you are not in isolation you can go for a walk or run, this can be done with family members living in the same house and make sure you maintain a two metre distance from others. There are also many online exercise programmes that you can follow to help you stay active.

Try to keep your mind active by being creative, reading, listening to music, doing a crossword, keeping a journal or getting crafty around the home – find something that works for you.

Try to avoid watching, reading or listening to the news too frequently, as this can be a source of great anxiety. Seek information only to help protect yourself and your loved ones or to get updates on Covid-19 once or twice a day from trusted sources, such as the NHS and Gov.uk. Limiting this will help to ensure that you are getting accurate information.

You can find some useful information about looking after your mental health during this time from the following websites:

Every Mind Matters

Guidance on Shielding

WHO Mental Health Guidance

More guidance

Please be aware that, in line with Government recommendations, the TOFS team are currently working from home and are currently unable to respond to messages left on the office phone but you can reach us on 07568 390271 or email on info@tofs.org.uk if you have any queries or concerns. You can also get in touch with other members on our closed Facebook group (www.facebook.com/groups/TOFSMEMBERS) 

Please refer to the following organisations’ guidance for further information on the outbreak and how to protect yourself. Please note that the advice about what to do may vary between the devolved nations.

Other useful links:

British Lung Foundation

Asthma UK

Helpful OA/TOF resources

We've compiled some resources which may be helpful during this time.  Resources can be found on the links below for you to print and use at home.

TOF cough badge - Suitable for TOF children and adults

My cough is not contagious badge - Particularly useful for adult TOFs

My cough is not contagious poster - Useful awareness for adult TOFs

Covid-19 poster - You can stick this in your window to advise people if you are isolating 

Emergency card - Particularly useful for adult TOFs in order to record emergency contacts, health care team, medical history and medications

TOF cough card - Useful for adult TOFs to explain that a TOF cough is normal for you

 

This page was last updated on 2 April, and will be updated regularly as new guidance becomes available.

© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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Our team at TOFS is working tirelessly to bring you the latest advice regarding Coronavirus. The support and advice we provide are only possible thanks to kind donations from people like you. If you're able, please consider donating now.