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 IEIs are seen in follow-up clinics thereafter. There are also specialist clinics for children with specific conditions and some are held jointly with clinicians from other related disciplines, such as respiratory paediatrics and rheumatology.
We accept patient referrals from local GPs and from other 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, located 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 housed on Ward 2B on Level 3 of the Great North Children’s Hospital. There is also a separate day unit within ward 3, our haematopoietic stem cell transplant (HSCT) ward.
In addition, we hold a number of outreach clinics with colleagues based in centres across Great Britain. These allow particularly complex patients who are already under the care of local paediatricians to be seen in a hospital closer to the home, without necessarily having to travel to Newcastle.
Accessibility
Find out more information about how to get here. If you are driving, please allow plenty of time for finding a space at busy times.
We have a number of support options to help people with particular access requirements. Please visit the hospital’s AccessAble website which provide information about the accessibility available at 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. There is also option for telephone and video clinic appointments.
Investigations usually involve various blood tests and sometimes imaging, such as x-rays or scans. Occasionally such tests are done under sedation or general anaesthetic on the day case ward. Important information about tests is provided verbally and in writing where appropriate, such as when formal, informed consent is required.
Patient care is also delivered by other members of the multi-disciplinary team (MDT), including junior 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 colleagues.
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, in order 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.
Patient feedback
We abide by the core values as enshrined in the national dignity in care campaign.
You might be asked to give anonymised feedback on the care you or your child have received after your appointment or stay within the hospital. This information is fed back to consultants and helps us to improve and develop our services.
If you have a specific complaint, please contact North of Tyne Patient Advisory and Liaison Service (PALS) on Freephone: 0800 032 0202 for advice.
Research
The paediatric immunology department at GNCH is actively involved in research aimed at improving the care of children affected by IEI, especially those treated with bone marrow transplant.
Patients and their families may be asked to consent to participate in research studies whilst under our care. This might involve sharing clinical 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 clinical care in any way.
Training
Our department, working closely with Newcastle University, frequently host regional, national and international courses, meetings and conferences.
We deliver educational sessions for various medical and nursing professionals and students. We also offer training opportunities such as observership for up to 3 months, and fellowships in paediatric immunology, subject to availability. GNCH is a centre for national subspecialty clinical training in the field of paediatric immunology and many other paediatric subspecialties.
We could accommodate overseas self-funded clinical fellows who wish to improve their knowledge and experience in paediatric immunology and haematopoietic stem cell transplantation (HSCT).
Contact
For further enquiries please contact Roz Scott, for observership and Gale Roberts, for fellowship.
Allergies
Our allergy experts also work closely with our immunologists.
Useful websites for patients and families
- 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 using this address:
Paediatric Immunology
Queen Victoria Road
Newcastle upon Tyne
NE1 4LP
For urgent advice, including out-of-hours advice, please contact the GNCH switchboard and ask for the on-call paediatric immunology consultant.
