ID UK (Immunodeficiency UK) is a patient organisation that has produced useful information for patients with primary and secondary immunodeficiency.
The UK PIN (UK Primary Immunodeficiency Network), an organisation of specialist doctors in Clinical Immunology in the UK, is another useful source of information.
If you have been diagnosed with an immunodeficiency and are followed up by our department, please inform us if you are admitted to hospital for emergencies like an infection, on 0117 4143456. Please also let any other medical practitioners involved in your care know about your immune deficiency.
We are advising our patients to follow government guidelines in terms of protecting themselves from COVID-19. These are updated regularly and can be found here. If there are specific extra precautions or information we feel you need to know we will either communicate this with you (e.g. via letter) or inform you at your next appointment. ID UK also produces expert guidance on patients with immunodeficiency in relation to COVID-19.
Our services will flex according to the situation in the hospital and consultations may be performed in person, by telephone or by video call.
If immunodeficiency patients develop symptoms of COVID-19 (e.g. temperature >37.8oC, a new continuous cough, or change in sense of taste or smell) then, as with other patients, you should follow government advice. Patients with significant immune deficiency should have access to lateral flow testing for COVID-19 at home and should test if symptomatic. These can be ordered from the gov.uk website, and the department should have informed patients if they feel they would qualify for having these tests. If patients with significant immune deficiency test positive for COVID-19, they should register their result on the gov.uk website. Additionally, they should try and avoid contact with other people for 5 days, and potentially longer (e.g. 10-20 days), particularly in respect to contact with people at higher risk from COVID-19. If you are a patient under our Clinical Immunology service and are not sure what to do about avoiding contact with others then please do get in touch with us. If patients are due to come to the hospital for a routine appointment (e.g. immunoglobulin infusion) then they should not attend and should get in touch about what is required prior to them attending.
Treatments for COVID-19 infection for patients with immunodeficiency are available. If patients become infected and have a positive test, they should discuss this with their GP or 111 urgently who can potentially send a referral to a COVID-19 Medicine Delivery Unit (CMDU) via eRS if appropriate. Alternatively, patients can contact us - our Immunology service is open office hours, Monday to Friday, and patients can get in touch on the phone numbers above. If patients are very unwell with COVID-19 then they may consider attending their local A&E.
Evusheld is a prophylactic antibody therapy for people who had a suboptimal response to COVID-19 vaccination. It has not been approved for use in the UK yet, but Immunodeficiency UK, along with many other charities, are lobbying for its availability. If you would like to support this, please sign the online petition.
Useful information with regards to COVID-19 vaccines can be found on the government website, the ID UK website and on the BSI (British Society of Immunology) website. Individuals who are immunosuppressed who have completed their primary course are now advised to have an autumn booster dose, 3 months after their last one. In England people who are eligible can book their booster online (or call 119 to book). The NHS has also advised local sites to allow people with a weakened immune system to self-declare and attend walk-ins and vaccination centres, to make getting the extra protection as easy as possible. It might still be worth taking our clinic letters with you to demonstrate your immune condition. Self-declaring household contacts of people who are immunocompromised can also book their own Autumn boosters online.
Information for GPs - Clinical Immunology/ Immunodeficiency Service
We run regular Adult Immunology/Immunodeficiency (and Allergy) clinics on Tuesday mornings, Thursday afternoons, and all-day Friday reviewing patients referred (see Patient Referral Pathways) to our service with suspected or confirmed immune deficiency. Criteria and advice for whom to refer can be found on the Remedy website.
Our service provides replacement antibody therapy (immunoglobulin) to patients with confirmed antibody deficiency. This can be given in hospital (as a day case) or at home.
For patients with recurrent infections please try to confirm the nature of the infection before referral. For example, by sending relevant microbiological cultures, viral swab tests, taking the patient’s temperature, inflammatory markers, radiology etc.
Last updated: 02/11/2022