CHEERS (Paediatric Rheumatology)

Children's Services (Paediatrics)

The paediatric rheumatology team provide the best possible evidence based care for all children and young people with rheumatological conditions.

Urgent advice: Covid-19 - Paediatric Rheumatology

Advice for paediatric rheumatology patients with regard to Coronavirus (COVID-19)

A coronavirus is a type of virus, which presents with symptoms of:

  • a high temperature
  • a new, continuous cough
  • a loss of, or change to, your sense of smell or taste

The evidence shows that most cases in children and young people are mild, even in those on medications for arthritis. The virus causing COVID-19 infection is called SARS Cov2 and like the common cold, COVID-19 infection usually occurs through close contact (within 2 meters for more than 15 minutes) with a person with coronavirus via cough, sneezes or hand contact.

To protect yourself and others, when you leave home you must:

  • wash hands - keep washing your hands regularly with soap and water (or use sanitiser)
  • cover face - wear a face covering over your nose and mouth in enclosed spaces
  • make space - stay at least 2 metres apart, or 1 metre with a face covering, from people not in your household.

Further government advice is available here:

gov.uk/coronavirus

nhs.uk/conditions/coronavirus-covid-19/

If your child develops symptoms and you are concerned this may be coronavirus:

Stay at home: what to do if you or someone you share your home with has coronavirus symptoms

If your child is on regular medications of methotrexate, mycophenolate mofetil, azathioprine, leflunomide or biologics (eg etanercept, adalimumab, tocilizumab, infliximab, anakinra, abatacept):

  • If in contact with suspected infection – continue medications as usual
  • If coronavirus symptoms develop, follow government advice
  • If the symptoms remain mild, continue medications as usual
  • If your child becomes unwell with persistent cough or fever, withhold the above medication/s, and notify your team who will advise when to restart treatment

Being on any of the above medications does affect your child’s immune system. However the scientific evidence shows that these medications do not put your child at risk of severe infection were they to catch COVID19.

If your child is on steroid treatment (‘prednisolone’): do not stop steroids abruptly; continue them on the regime advised by your health professional team. Contact your team if you wish to discuss this further.

Shielding

A small number of children were thought to be ‘clinically extremely vulnerable (CEV)’ due to the medications taken or the combination of illnesses they have. They were placed on the CEV list, held by NHSE. The decision about who should be on this CEV list was made following national guidance early in the pandemic. You will have been notified if your child was on this list.and you were advised to take extra precautions during the peak of the pandemic in England. This is known as ‘shielding’.

UK paediatric rheumatology consultants have recently had a virtual meeting to discuss the scientific evidence collected during the pandemic so far. Following which the national advice has changed. It is agreed that no child or young person needs to be on the ‘clinically extremely vulnerable (CEV)’ list because of their rheumatology disease. We are contacting those who were on the CEV list for their rheumatology condition advising them that they will be removed from the list. All children and young people are currently advised to go back into education If there is a case of coronavirus at your child’s school, you should adhere to the advice given by the school.

National advice is now as follows:

Our advice has changed because of evidence that has now become available from across Europe. 

There is no evidence that children and young people with rheumatological conditions are more likely to be infected with COVID-19 than those without rheumatological conditions. 

If they do become infected with COVID-19 there is no evidence that children and young people with rheumatological conditions will become more unwell compared with children and young people without rheumatological conditions. 

This advice includes those on immunosuppressive medications. 

Our advice is paediatric rheumatology patients should continue to attend school

Use of Non-steroidal anti-inflammatory drugs (NSAIDs) e.g. Ibuprofen

There were early media reports regarding the use of NSAIDs in relation to COVID-19. These have been thoroughly investigated and the resulting report is in the link below:

Commission on Human Medicines advice on ibuprofen and coronavirus (COVID-19)

  • Taking NSAIDs does not increase the risk of catching the virus
  • If you think your child needs the medication for pain or swelling you should continue
  • For treatment of possible COVID-19 symptoms (fever and cough), paracetamol can be used, if it is suitable for your child to take this medication. Ibuprofen can be used in addition or as an alternative.

Further advice

If you need further advice about your medication or you become unwell and the doctor looking after you needs advice, please contact the paediatric rheumatology advice line at the hospital where you have your specialist appointments, during working hours (8:30-16:00, Monday to Friday).

Addenbrooke's Hospital: 01223 254988

Norfolk and Norwich Hospital: 01603 287911

Additional resource:

Helpful information from the charity Versus Arthritis

versusarthritis.org/news/2020/april/coronavirus-covid-19-and-arthritis-where-to-go-for-information/

And from Kids with Arthritis (CCAA)

ccaa.org.uk/coronavirus-support-resources/

Specific advice relating to hospital attendance

Outpatient appointments

Regarding your child’s out-patient appointment at CUH, Jenny Lind, and our paediatric rheumatology outreach clinics:

We are now able to see a limited number of children and young people in person in the clinic environment again. We are prioritising urgent cases where there may be a flare up of disease or new disease and it is important for us to examine your child. Other appointments will be telephone appointments. The outpatient team will contact you to confirm whether your appointment is by phone or in clinic. If you have not had contact prior to your appointment, please phone the clinic to confirm the arrangements. If you are attending clinic, only one parent can accompany your child (and no siblings).

If you think your child may have COVID-19 or is unwell, please do not bring them to their routine hospital appointment, but contact your team to let them know you cannot come.

Routine blood monitoring

In order to reduce hospital attendance we will increase the interval between blood tests for certain patients on disease modifying anti rheumatic medications (DMARDs) and biologics to 3 months. This extension will only apply to those who have been on these medications for at least 6 months and have not had an abnormal result in the last 3 months.

Booked infusions of medications

These are going ahead but may not be in the usual place. We are making arrangements to keep you as separate from other patients as possible. Please confirm the venue and procedure for your infusion before you attend. Hospital policy again allows one parent to accompany your child and no siblings.

If you have to self- isolate due to suspected COVID 19 infection in your home, you should not attend for your infusion. Please contact us to defer the infusion date to after the isolation period.

Our goal is for the child and young person to be able to fulfil their potential in all areas of growth and development, without any restriction associated with their condition. Care is therefore tailored to the individual needs of the child and family and delivered as close to home as is practical and safe. We will see children and young people up to the age of 16 years with all the conditions listed in the National Service Specification for paediatric rheumatology. Young people from 16 to 18 years who need ongoing rheumatology care will be transitioned to the adult service at a time which is best for them.

Clinics are held in Clinic 6 or in the Child Development Centre throughout the week. Outreach clinics are held in Norwich, Great Yarmouth, Kings Lynn, Ipswich, Basildon, Colchester, Harlow.

The paediatric rheumatology team provide the best possible evidence based care for all children and young people with rheumatological conditions. Our goal is for the child and young person to be able to fulfil their potential in all areas of growth and development, without any restriction associated with their condition. Care is therefore tailored to the individual needs of the child and family and delivered as close to home as is practical and safe.

We will see children and young people up to the age of 16 years with all the conditions listed in the National Service Specification for paediatric rheumatology. Young people from 16 to 18 years who need ongoing rheumatology care will be transitioned to the adult service at a time which is best for them. 

In collaboration with Norwich and other networked centres around the region we aim to provide a child, young person and family centred service, and treatment is tailored to this end. We promote young people’s confidence and independence and have raised charitable funding to run yearly ‘independence break’ weekends for high school age young people in a safe but physically challenging environment to foster a ‘can do’ attitude. We also work with National Rheumatoid Arthritis Society (NRAS) to provide Juvenile Idiopathic Arthritis (JIA) family ‘fun days’ in the East of England, providing education around the conditions and promoting and facilitating peer support.

Referrals

To make a referral to the Rheumatology department please email add-tr.paedrheumatology@nhs.net or post to Paediatric Rheumatology Secretary, Box 267, Children’s Services, Addenbrooke’s, Hills Road, Cambridge CB2 0QQ

GP’s can also use the Advice & Guidance service via the eReferral system for Paediatric Rheumatology.