News

Coronavirus

Published: Wed, 13th January 2021, 10:40:00 AM

As we enter the third phase of rises in Covid-19 cases in the UK, we will continue to update this page regularly.  Advice is changing frequently so please check back often.  With the identification of a new, more rapidly spread, variant of coronavirus the RCPCH reports that although the strain is affecting people of all ages they are not seeing any greater severity amongst children and young people.  Read more here.  The British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) has released a statement relating to how Covid-19 is affecting young people, read the statement here.

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 a respiratory illness which the coronavirus causes.  Symptoms of COVID-19 will be mild for many, but are most severe in those consider to be clinically extremely vulnerable and those over the age of  70.  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, loss of taste and smell and high temperature. 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.

 

Where can I find current information about what I can and cannot do?

Current advice and information about covid-19 in each of the devolved nations

England - www.gov.uk/coronavirus

Scotland - www.gov.scot/coronavirus-covid-19/

Wales - https://gov.wales/coronavirus

Northern Ireland - www.nidirect.gov.uk/campaigns/coronavirus-covid-19

Restrictions are currently in place, for details on what you can and cannot do follow the links below:

England: National lockdown: Stay at Home - GOV.UK (www.gov.uk)

Scotland: Coronavirus (COVID-19): stay at home guidance - gov.scot (www.gov.scot)

Wales: Alert level 4 | Sub-topic | GOV.WALES

Northern Ireland: Coronavirus (COVID-19) regulations guidance: what the restrictions mean for you | nidirect

School advice

It was announced that from 05 January 2021, until February half term, students in England in primary and secondary schools, and colleges will be required to learn remotely, unless they are the children of critical workers or are vulnerable.  A full list of critical workers can be found here.  Nurseries are currently open as normal.

Face coverings

A face covering must be worn when in public enclosed spaces, such as supermarkets, shopping centres and hospitals. For more information, how to make a face covering and printable resources for those unable to wear one click on the following links:

Advice for England

Advice for Scotland

Advice for Wales

Advice for Northern Ireland

 

Covid - 19 advice for those born with OA/TOF

Are those born with OA/TOF at increased risk?

Whilst many OA/TOF patients are used to coping with respiratory illness, many have an increased risk more severe symptoms from all types of flu and viruses.  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 here.  Adult 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, lost of sense of taste and smell 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 request a test and self-isolate from the day your symptoms started (or the day your test was taken if you do not have symptoms), and the next 10 full days (more details here) 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 anti-reflux 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.

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

We have a range of resources available, including the Hidden Disabilities ‘My Cough is Not Contagious’ lanyard and ‘Don’t Worry it’s only a TOF Cough’ badge, these are available to order free of charge to TOFS charity members here (www.tofs.org.uk/leaflets-and-publications.aspx).

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?

Following a 3rd national lockdown in England, schools are due to reopen after February half term.  Provisions will continue to be made for vulnerable children and children of key workers.  More details can be found here.

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

The NHS test and trace app is available to download. Once connected to Bluetooth, you will be notified if you come in to contact with someone who has received a positive test result and will be required to self-isolate.  You may also be required to ‘check’ in to certain public places using the app’s QR code reader.

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

How can I protect myself and my family when in public?

When in public it is important that social distancing measures are adhered to. You should maintain a 2 metre distance from those you do not live with (and are not in a support bubble with).  Current government advice is to only leave home for the purpose of outdoor exercise, essential shopping and to attend appointments.  You must work from home if it is possible to do so.

Where social distancing is not always possible (eg. in shops), wearing a face covering is required (it is not recommended for a child under the age of three to wear a face covering for health and safety reasons). Although a face covering does not protect you from catching coronavirus, if you are infected but are not displaying symptoms it may protect others that you come in to close contact with. Wearing a face covering does not replace social distancing and this must be maintained where possible and if you suspect you have Covid-19 you must self-isolate and arrange to have at test.

If you wish to make your own face masks you can find out how here.

What is a ‘support bubble’ and what are the rules?

Those living alone (or as a single parent with dependent children), have a child under the age of one, or care for a child under five who has a disability requiring continuous care, are able to form a support bubble with one other household. Those in a support bubble can treat each other as if they are a single household and may enter each other’s houses and do not need to adhere to social distancing rules when together. Support bubbles are exclusive and you must not switch the household which you are in a bubble with. Further guidance can be found here.

What are the new national restrictions that will be in place from 05 January 2021?

On 04 January it was announced that we will enter in to a third national lockdown from 05 January, until February half term.  Much like the first lockdown, there will be restrictions, such as working from home if possible, the closure of schools and colleges, all non-essential shops to be closed and the closing of all non essential businesses.  You may not meet with any person outside of your family or support bubble.  Full details of exceptions as well as what you can and cannot do can be found 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 are currently stricter rules on visiting during and post birth, units are permitting a partner to be present during labour, however they may not be able to 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

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.

I have heard that dexamethasone has been found to be useful for fighting the coronavirus, is this true?

Dexamethasone, a steroid regularly prescribed to TOF children to help relieve symptoms associated with croup, has been found to reduce the chances of death significantly of patients being treated in hospital for covid-19 that require oxygen or a ventilator. You can read more on the effects of dexamethasone 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.

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, contact your GP, consultant or surgical team for further advice if required.

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?

Those who are considered to be extremely clinically vulnerable will once again be required to shield, you will be notified in due course if this applies to you.  As of 05 January 2021 further restrictions have been put in place, use the links at the top of the page to find current advice.  The current rules relating to shielding can be found here.

Should I continue to shield my TOF child?

The Royal College of Paediatrics and Child Health (RCPCH) has issued guidance for clinicians which outlines what childhood conditions require continued shielding and which do not. TOF children come under ‘Group B’, which states the following:

‘Conditions listed…will require a case-by-case discussion to decide whether, on the balance of risks, a child should be advised to continue to shield.

A decision to shield will depend on the severity of the condition and knowledge that the secondary and tertiary care clinical teams have of the particular circumstances of the child. If following a discussion, a child is advised not to shield, they should maintain stringent social distancing.’

Specific advice to TOF patients suggest that there is a need for continued shielding if the following circumstances apply:

‘Children with repaired congenital thoracic abnormalities such as congenital diaphragmatic hernia / trachea-oesophageal fistula only if significant airway or lung problem.’

You can read the complete advice on shielding guidance here.  Read a recent statement from the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN), in relation to shielding and how covid-19 is affecting young people, 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 or those in your support bubble. 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

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 re-introduced the 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 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 covid-19 and how to protect yourself. Please note that the advice about what to do may vary between the devolved nations.

 

Current coronavirus information for each of 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.  The Hidden Disabilities ‘My Cough is Not Contagious’ lanyard and ‘Don’t Worry it’s only a TOF Cough’ badge can be order from our leaflets and publications page.

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

Cloth face covering - how to make and wear a cloth face covering

 

This page was last updated on 13 January 2021, and will be updated regularly as new guidance becomes available.

© Tracheo-Oesophageal Fistula Support
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