COVID-19 (coronavirus) – information our Cystic Fibrosis Team - click to read

We understand that you might be worried about Coronavirus – also known as COVID-19, particularly if your child has a long-term condition such as Cystic Fibrosis (CF).  This newsletter from the Cystic Fibrosis Team at Birmingham Children’s Hospital (BCH) sets out our advice for children and young people who use our services.  Please read this alongside our general information about coronavirus (COVID-19) available online at www.gov.uk/government/organisations/public-health-england

Does COVID-19 affect children?

The evidence to-date shows that although children do develop COVID-19 very few children will develop severe infection with COVID-19.  The Cystic Fibrosis Trust has enquired internationally for evidence of how infection with COVID-19 has affected individuals with cystic fibrosis.  In those who are well it may be a mild illness, but those with significant chest problems may be at risk of more severe illness.  Your child is classed as ‘vulnerable’ due to their cystic fibrosis so you should follow the guidance on shielding from Public Health England which is the most up-to-date source for this information. 

What will be happening to CF outpatient clinic appointments?

The BCH CF team has worked to remove the need for patients to attend face-to-face appointments wherever possible during the Coronavirus pandemic.  We are reviewing children and young people with CF via telephone and/or video consultation.  It is important to continue to monitor your child’s progress. Therefore, if your child has a forthcoming clinic appointment booked this will not be cancelled.  A member of the CF team will call the week before a planned appointment to discuss and make a plan for your child’s appointment. If your child was due annual review blood tests and chest X-rays these will be discussed at this appointment and a plan made for how and when these will be done.

What will happen if my child is unwell or needs to come into hospital for intravenous (IV) antibiotics?

If your child is unwell, the BCH CF team will arrange to see your child in a safe way, it will still be important to see some children in hospital, but this will only be done if required.  If your child requires urgent care, the BCH emergency department continues to see all children in a safe way during the Coronavirus pandemic. Children on regular IV antibiotics will be contacted by their CF team to plan their admissions.

Specific advice about medicines from the Cystic Fibrosis Team

Your child must not stop taking their medicine without first discussing with their CF team.  If your child is taking Orkambi or Symkevi they will need to have regular blood tests to monitor liver function. It is essential that we carry out regular blood tests, although we may do these less frequently than originally planned if it is safe to do so.  In order to do these tests we may ask you to come to hospital but this will be done in a safe way.

 

Specific Information about keeping active from the Cystic Fibrosis Team

Your child should be following guidance from PHE on shielding.  If you have a garden your child can exercise there but there are plenty of options for exercising indoors too.  Your physiotherapist can help with this and we may provide you with some specific guidance. 

Sample Collection and Lung Function

The BCH CF Team is developing processes to collect respiratory samples and record lung function from children and young people with CF who are shielding at home.

 Further Information and Support

Information from the BCH network website at www.wmscpcfn.nhs.uk

Information from the Cystic Fibrosis Trust at www.cysticfibrosis.org.uk/

Information from the NHS at www.nhs.uk/conditions/coronavirus-covid-19/

Information for children is available on the BBC Newsround website at www.bbc.co.uk/newsround

Information for children and young people from NICE – COVID19 – rapid guideline www.nice.org.uk/guidance

Guidance for paediatric services – COVID19 from Royal College of Paediatricians www.rcpch.ac.uk

Contact

Finally, we aim to respond promptly to any Government and PHE changes to current guidance so please do look out for further updates by using the highlighted link above for our network website.  Please do contact us in the usual way if you have any questions or concerns. 

We are here for you all. 

CF Nurses: 0121 333 9248               #StayHomeStaySafe

Respiratory

Respiratory and Cystic Fibrosis Service

The department of respiratory medicine and cystic fibrosis (CF) provides comprehensive services to the West Midlands including cystic fibrosis, sleep disorders, difficult asthma, invasive and non-invasive long term ventilation, rare respiratory conditions such as primary ciliary dyskinesia (PCD), interstitial lung disease, bronchiectasis and cross working with other subspecialties.

We’ve recently successfully developed a multi-purpose respiratory and CF unit (RCFU) and established a managed paediatric CF network, as well as long term ventilation, difficult asthma, lung function and regional sleep and non-invasive ventilation (NIV) services. We work closely with other healthcare providers to offer the National Primary Ciliary Dyskinesia clinical service.

The cystic fibrosis service sits at the centre of the South and Central West Midlands Paediatric CF Network, one of the largest paediatric CF networks in the country. We have close links with the West Midlands Newborn Screening service based at the Children’s Hospital and also work closely with liver services.

Who we treat

We treat children and young people aged between 0-18 years with asthma, including 40 to 50 with difficult asthma receiving specialised treatments. We also see more than 300 patients with cystic fibrosis, those with chronic lung disease of prematurity, non-CF bronchiectasis (including 40 with primary ciliary dyskinesia) and currently about 70 children and young people needing non-invasive and invasive ventilation and more than 1,000 with chronic long term respiratory conditions.

The team

Our department is highly regarded both locally and regionally as providing comprehensive high-quality diagnostic and clinical services delivered by a multi-disciplinary team of doctors, specialist nurses, physiotherapists, dietitians and clinical scientists. The team provide care in the community and the hospital. They work with families to improve their journeys and avoid unnecessary admission by early intervention.

Although the majority of our respiratory children and young people are managed as outpatients, there are significant and increasing inpatient numbers. We aim to review the conditions of our children and young people regularly to avoid the need for hospital admission, where possible, helping patients and families to manage their conditions at home.