News

Coronavirus

Published: Mon, 1st June 2020, 10:00:00 AM

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: 'What is the new advice for those who have been shielding?', 'How will I know if someone I've been in contact with has coronavirus?', 'My child is vulnerable, am I legally required to send them to school on June 1 and will I be fined if I don't?', 'When are schools likely to re-open?', 'What are the known symptoms of Covid-19?', ‘Should people born with OA/TOF be following the governments guidelines for shielding?’, ‘I’m an adult TOF, how can I cope with anxiety during the outbreak while managing my condition?’, 'Will the ‘lock-down’ affect care for me and my TOF?' and 'Will routine care still be available for TOF patients?')

TOFS’ Chief Executive, Diane Stephens, recorded a Facebook live video which highlights key Covid-19 information as of 24 April. The video includes information and advice from RCPCH (Royal College of Paediatrics and Child Health), such as ‘should TOFs be shielded, sign posted information for respiratory health, getting you/your TOF seen during the pandemic and very importantly ‘looking after yourself’. The video can be viewed here.

 

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:

What are the known symptoms of Covid-19?

Covid-19 affects people in different ways, for most symptoms will be mild, including a dry cough and high temperature. It has recently been recognized that an additional symptom of Covid-19 is a loss of sense of smell and taste. You can find more information here.

If you suspect that you or your child have symptoms you must follow guidelines on self-isolation.

You can now request a test if you suspect you have coronavirus, more information here.

Covid - 19 advice for TOFs

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'.  More information on who is considered to be at higher risk is available here.

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.

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.

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. 

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.  

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.

When are schools likely to re-open?

On 10 May the government announced their plan for certain age groups to return to school on 01 June. It was stated that children should prepare to return to early years settings and for years 1 and 6 to return with smaller class sizes.  There is ongoing debate about this and further plans for all primary age students to return to school before the summer holidays.  More information is available here.

My child is vulnerable, am I legally required to send them to school on June 1 and will I be fined if I don't?

The government 'strongly advices' that eligible children return to school 'unless the child or a family member is shielding or the child is particularly vulnerable due to an underlying condition.' There are at present no fines in place for non-attendance. 

There are a range of measures that will be put in place to ensure the safety of children when they return to school and pre-school, these include:

  • Reduced class sizes and students placed in small groups without mixing with others.
  • Staggered lunchtimes, drop offs and pickups.
  • Increased cleaning, reducing the use of shared items and increased use of outdoor spaces.

From 1 June all returning students, their families and teaching staff, who display symptoms of Covid-19, will be eligible to take a test and must remain at home pending results.

The full statement from the Department for Education is available here.

How will I know if someone I’ve been in contact with has coronavirus?

From 28 May the NHS are launching a new test and trace service where anyone that is displaying symptoms of coronavirus is required to report their symptoms and take a test. There is currently a task force in place who will quickly make contact with anyone who a symptomatic person has been in close contact with. Those contacted must isolate for 14 days and are required to take a test if they develop symptoms.

In the coming weeks The NHS will be rolling out a new test and trace app which will make notifying those who have been in contact with someone who has coronavirus even more efficient.

It has been announced that tests are now available for children under 5.

You can find more information about the NHS test and trace service here.

 

Non Covid - 19 related hospital visits 

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.

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. 

Will the ‘lock-down’ affect care for me and my TOF baby?

If you have recently given birth to a baby with OA/TOF you will be feeling uncertain about the pre/post-operative support that you will receive during this time. Rest assured that the level of support will not be detrimental you the health of your baby. While non-essential surgeries may be postponed your baby will not be discharged from neonatal intensive care without the necessary procedures first taking place. Babies may be discharged before being able to fully orally feed but you will receive a high standard of care via video/telephone to help support the progression from tube to oral feeds over time.

New babies may be discharged earlier (primarily due to parent anxiety of being on a ward) but will continue to receive midwife support but appointments may be by video or telephone and weigh-ins may take place in the home but be carried out by the parents meaning that Health Visitors do not need to go in to houses.

There is likely to be stricter rules on visiting during and post birth. Many units are permitting a partner to be present during labour, however they may not be present before active labour, or on the postnatal ward. One parent/carer may be allowed in the neonatal/paediatric unit during your child’s stay and in some cases it may be the same parent/carer for the duration of the stay. In some cases babies may have to stay in an out of area unit, depending on availability of cots.

My/my child's endoscopy has been postponed.  What should I do if my/their symptoms are worsening?

Both adult and paediatric patients are likely to have to wait longer for planned surveillance endoscopies and biopsies, however parents/adult TOFs are encouraged to monitor any worsening reflux symptoms and more frequent food bolus obstructions and should report this to their surgeon, consultant or GP as more urgent investigation may be needed.

I'm scared to take my child for his/her routine vaccination.  Should I wait until the crisis has passed?

No.  It is important for TOF children to continue with their routine vaccines. The following information has been shared by Prof. Helen Bedford ( Prof. of Children’s Health, UCL Great Ormond Street Institute of Child Health) and Nigel Hall (Consultant Paediatric Surgeon at Southampton, and member of BAPS Research Committee) and is important to take note of:

"It’s vital for babies to have their routine vaccines. Vaccine-preventable diseases will continue to circulate during and after the pandemic”

Public Health England has confirmed that routine vaccinations should continue as normal and parents should contact their GPs to arrange these.

The Royal College of Paediatrics & Child Health has produced the following poster which gives advice for parents for what to do if your child is unwell or injured. You can download the pdf here

I'm interested in finding our more about good respiratory health, can I find out more?

There are lots of resources on the TOFS website.  Have a look at the Covid section in our Leaflets and Resources page.  And watch these videos that have been filmed at TOFS conferences:

Dr Satish Rao discusses 'Respiratory illness in TOF children' (2018 TOFS Conference)

Prof Alyn Morice discusses 'Issues pertinent for Adult TOFs' (2018 Adult TOFs Seminar)

Dr Omendra Narayan discusses 'Managing respiratory problems in children with TOF' (2019 TOFS Conference)

These articles, previously published in our newsletter, Chew, may be useful too: 

Tips and tricks to help with respiratory problems, with Dr Lianne Van der Giessen, written by Vicky Martin (2019 TOFS Conference)

Bubble Pep and the Huff Cough, written by TOFS local contact Jenny Byrne 

Previous editions of Chew are available in full, on the members-only section of the website

 

Medication advice

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.”

Can taking vitamin D supplements help limit the severity of Covid-19?

Thanks to Paediatric Dietitian and TOF mum Julia Faulkner who has written an informative article about some research in to the benefits of taking vitamin D supplements. You can read it here.

There has recently been research published suggesting that vitamin D supplements may help to prevent, or limit the severity of respiratory infections such as Covid-19.  The evidence isn’t specific to COVID-19. Researchers are drawing conclusions from observational studies indicating that those with higher vitamin D levels have a lower risk of respiratory tract infections/pneumonia. However it reminds us that the majority of people should be taking vitamin D as per current guidance’

Please visit The Association of UK Dietitians, Vitamin D: Food Fact Sheet here.  The published evidence report is available to read here.

 

Shielding

Should people born with OA/TOF be following the governments guidelines for shielding?

Due to the rarity of OA/TOF and the broad spectrum of different experiences of those that have had repair surgery there is no clear guidance, Dr Rebecca Thursfield, Consultant in Paediatric Respiratory Medicine and Associate Director of Research at Alder Hey explains more:

‘Translating this to our population with TOF; I feel that MOST people with repaired TOF/OA repair would NOT fall into this category. Those with significant tracheobronchomalaica, those with limitations to their respiratory function and those with recurrent respiratory tract infections/bronchiectasis would fall into the category of those whom require home shielding.  The family could either make this decision for themselves, or discuss with their usual team. There is no specific guidance in this group (that I am aware of) due to it being a rare disorder, so it will be a matter of judgement for the patient/parent or clinician if need be.’

Further information on shielding for those with OA/TOF can be found in TOFS CEO Diane Stephens' Facebook live video at the top of the page (information relevant as of 24 April).

You can also find further information on who is at higher risk of coronavirus and what to do 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.

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.

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.

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.

What is the new advice for those who have been shielding?

It has been announced that from 1 June all those who have been shielding since the lockdown began can now begin to go outside. It has been suggested that clinically vulnerable people can meet with one person outside of their household but must ensure that they maintain a distance of two metres in order to reduce the risk of infection. The updated advice on shielding is available here.

Those that haven’t been shielding can now meet in a group of no more than six people, whist adhering to social distancing, this must take place outside. Information about the amended lockdown rules can be found here.

 

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

How can I support my child throughout this challenging period?

Specialist Senior Educational Psychologist and TOF mum Claire Cooper-Jones has kindly shared her research with us. You’ll find support for parents as well as advice on maintaining emotional wellbeing. Click here to read more.

‘The Coronavirus outbreak means that we are all facing uncertainty which may have an impact on children and young people’s mental health. We have put together some general tips to support children, young people, parents and staff throughout this challenging period.’

I'm an adult TOF, how can I cope with anxiety during the outbreak while managing my condition?

Adult TOF and clinical psychologist Dr Vuokko Wallace has written a piece on how to manage stress and anxiety during this worrying time while ensuring that your health conditions are properly managed. You will find this information plus some useful links here.

 

Coping Financially

How can I cope financially if I am unable to work?

Depending on what your employment status is the government has put in place various ‘safety nets’ to ensure that you can continue to be paid if you are unable to work. Many will still be required to work during the lock-down period, this may be because you are considered to be a key worker or are able to continue with your work from home with the support of your employer. This is not always possible for all types of work or for those who are displaying symptoms of Covid-19 or isolating. A list of key workers can be found here.

SSP – If you are unable to work due to sickness or isolating due to the sickness of a family member you may claim statutory sick pay, which can be claimed form the first day of Covid-19 related sickness. You can apply for an isolation note here, this will replace the standard ‘fit note’.

Self-employed – If self-employed you may be eligible to claim universal credit. New claimants will not need to attend the jobcentre to demonstrate gainful self-employment. You can find more information here.

Furlough – the government has announced a furlough scheme, to insure that employers can continue to be paid even if they are unable to work due to remote working not being possible within their job role. If eligible, the government will pay 80% of a workers salary (up to £2500 p/m) to help to reduce potential redundancies. You can check eligibility here.

Accommodation costs – If you are eligible for universal credit you may receive support for rental costs. If you have a mortgage your lender may allow you to take a 3 month payment holiday if you are unable to keep up with payments. More information can be found here.

More information for employees can be found here. 

Note, regardless of Covid-19, some TOF families may be eligible for Disability Living Allowance (DLA).  DLA is the main benefit for children under 16 with a disability.  It helps to meet the extra costs that you might have as a result of your child's disability. There's lots of guidance on the Contact charity website.  Contact is the charity for families with disabled children, more information here.

 

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:

Royal College of Paediatrics and Child Health

British Lung Foundation

Asthma UK

European Lung Foundation - your questions answered by a respiratory expert

 

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 01 June, and will be updated regularly as new guidance becomes available.

© Tracheo-Oesophageal Fistula Support
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Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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