Inborn errors of immunity (IEI) are a group of rare, genetic disorders which can cause an increased susceptibility to infection, auto-immune problems, and sometimes also certain cancers among affected children. Severity can range from recurrent but generally mild and self-limiting infections, right up to life-threatening illnesses.
Children with suspected immune problems are usually assessed first as outpatients in general immunology clinics and those with confirmed inborn errors of immunity are then seen in follow-up clinics.
There are also specialist clinics for children with specific conditions and some are held jointly with others, such as children’s respiratory and rheumatology teams.
We accept patient referrals from local GPs and from other children’s doctors/paediatricians regionally, nationally and internationally. Children are cared for by a lead consultant and are managed as outpatients, day cases or as inpatients, according to their needs.
Where will my child be seen?
Children’s immunology clinics take place in the children’s outpatient department, on the ground floor next to the main entrance to the New Victoria Wing of the Royal Victoria Infirmary. Most clinics take place in the mornings, please check your appointment letters for the exact time and location.
The children’s day unit is on ward 2B on level 3 of the Great North Children’s Hospital.
In addition, we hold a number of outreach clinics with colleagues based in centres across the UK. These allow particularly complex patients who are already under the care of a doctor in their local area to be seen in a hospital closer to their home, without necessarily having to travel to Newcastle.
Location and accessibility
Find out more information about how to get here. If you are driving, please allow plenty of time to find a parking space at busy times.
We have a number of support options to help people with particular access requirements. Please visit the AccessAble website which provide information about the Great North Children’s Hospital for people with a wide range of different abilities or impairments.
If you need a translator, please contact us in advance of your appointment so that we can arrange for the attendance of an interpreter or use the telephone translation service.
What will happen at my child’s appointment?
Newly referred patients are generally seen in clinic within 3 months of referral, and ongoing management and investigation of those who need it takes place over one or more follow-up appointments. These are planned according to clinical need and urgent reviews can be scheduled through our administrative staff, if required.
If the appointment date or time is inappropriate, please contact our administrative staff so that it can be rescheduled – telephone 0191 282 5984. There is also an option for telephone and video clinic appointments.
Investigations usually involve various blood tests and sometimes x-rays or scans. Occasionally such tests are done under sedation or general anaesthetic.
Important information about tests is provided verbally and in writing where appropriate, such as when formal, informed consent is required.
Patient care is also provided by other members of the team including resident doctors, specialist nurses, psychologists, dietitians, and administrative staff. Once children reach the age of 16 years, we begin to transition care for those who still need it to our adult immunology service.
Clinic times and frequency
What if I have concerns about my child or my child is unwell?
If you have any concerns about changes in your child’s condition or their treatment, please discuss these with your consultant during your appointment.
If your child is admitted to another hospital, please contact the department to let us know, so that our specialist input can be provided to help with their care if necessary.
If your child is unwell between clinic appointments, you should visit your GP or appropriate out of hours service (urgent care centre or children’s emergency department).
Please request that any clinical correspondence is then directed to your immunology consultant.
Your consultant might also ask you to notify them by telephone if problems emerge.
Research
We are actively involved in research aimed at improving the care of children affected by inborn errors of immunity, especially those treated with bone marrow transplant.
Patients and their families may be asked to consent to take part in research studies while under our care. This might involve sharing data with collaborators around the world or giving extra blood or tissue samples for further tests. Sometimes we ask for permission to store samples for use in future projects.
Research studies are always explained to patients and families in full and written information provided before consent is sought. Participation in research is completely optional and whether or not patients participate does not impact their care in any way.
Allergy service
Our allergy experts work closely with our immunologists.
Useful websites
- European Society for Immunodeficiency
- Immunodeficiency UK
- Hereditary Angioedema
- International Patient Organisation for Patients with Primary Immunodeficiencies (IPOPI)
- UKPIPS
- Chronic Granulomatous Disorder Society
- British Society for Immunology
Jeffrey Modell Foundation
We are a member of the Jeffrey Modell Foundation’s global network of centres with experts in immunology (adult and paediatric).
Contact for professionals
To make a referral, please write to the department at:
Paediatric immunology
Royal Victoria Infirmary
Queen Victoria Road
Newcastle upon Tyne
NE1 4LP
For urgent advice, including out-of-hours advice, please contact the Great North Children’s Hospital switchboard and ask for the on-call paediatric immunology consultant.
