How to work with your GP Practice

Your GP is a vital part of your health care team and it is important to foster a good relationship with members of your GP practice. This article offers advice about how to achieve and maintain this good relationship.

People with PIDs often have a long journey to diagnosis, encountering many health professionals along the way. Some encounters will have been positive and others less so. Patients can slip through the net even in centres of excellence and this can cause frustration and resentment.

Primary immunodeficiency disorders are rare. According to the British Society for Immunology about 5,000 people in the UK have a PID.  The incidence of CVID is between 1 in 25,000 and 1 in 50,000 of the general population and many other PIDs are extremely rare.

To put this in context, the average GP Practice has a list of 8,757 patients (NHS Digital October 2019). The average person sees their GP about six times a year. GPs often work 12-hour days consulting with patients, dealing with correspondence, lab results, prescriptions, arranging referrals etc. GPs are well trained and knowledgeable about more common health issues but may not be familiar with PIDs. A GP can spend their whole career without ever seeing someone with a PID.

So when you have been diagnosed you may be equipped with more information about your condition than your GP, but remember your GP is highly experienced in looking after a patient's overall health needs, addressing concerns and implementing management plans.

Aim for a positive relationship! Try to stick with 2 or 3 doctors, get to know them and allow them to know you. At the outset it is a good idea to ask for a double appointment. Choose a doctor who is a permanent member of the practice and not about to retire or go on extended leave. Have 1 or 2 doctors 'in reserve' who will be familiar with your case.

Ask for your notes to be flagged. In this case an alert will pop up every time your notes are accessed and reminds all staff that you have a significant condition and should have ease of access.

Take a folder with your hospital notes (ask to be copied in all correspondence) and any guidelines your consultant may have provided, for example antibiotic prescribing protocols. Ask your GP for a printout of your notes and make sure this is updated if anything changes. Take this folder with you to all appointments and have it ready if you need to attend A&E or see any other health professional for example your dentist. Take notes at each consultation and make sure you understand what is said. Consider taking a relative or friend along if you think this would be helpful.

Educate your doctor! PIDUK have booklets available on specific PIDs, and a useful booklet for GPs so take these with you or direct your doctor to the Immunodeficiency UK website. There is a lot of printed and online information available from

Practice staff  Receptionists play a vital role in keeping the practice running but can sometimes appear obstructive. Stay calm and remain polite. Explain that you have a serious condition and that there is an alert on your notes. Explain that Dr X or Y is familiar with your case and that you need to speak to him/her if no appointments are available. Most practices have a policy for emergency appointments, don't hesitate to ask for one. If you feel that a problem is developing seek help sooner rather than later. It is better to ask for help on a Thursday morning than late on a Friday afternoon.

Practice Nurses It is advisable to get to know the nursing staff at your practice. They are usually responsible for immunisations and for monitoring some long-term health conditions like diabetes and hypertension. It may be helpful to provide contact details for your Immunology Nurse who can give specialist advice.

Pharmacists. Pharmacists may query prescriptions as you may need high doses of antibiotics for long periods, or unusual combinations of drugs. It is helpful to keep to the same pharmacy, make friends with the pharmacist and let them have prescribing information from your GP or immunologist.

Remain Positive!

Your GP is your advocate. S/he can liaise with your immunology team, provide advice about your general health, manage any other conditions you may have and be generally supportive. A good relationship with your GP is beneficial and achievable!

Finding a GP practice

You can search for local practices by entering your postcode on the Care Quality Commission (CQC) website. Immunodeficiency UK suggests that people only register with a practice which falls in the top two categories which are outstanding and good.

Approved by the Chair of our Medical Advisory Panel, 12th January 2021