What happens in the immunodeficiency clinic?
The immune system is the part of our body that protects us against infectious diseases caused by microorganisms, such as bacteria and viruses. Immunodeficiency is a very broad term that refers to any defect, big or small, in this system.
You might also like to read this letter and testimony from a patient, all about their individual experience.
For information about car parking please visit our 'getting here' page. Allow plenty of time for finding a space at busy times and sufficient change for parking.
When you arrive at main reception, you will be directed to the outpatients department. Once you have checked in a member of the team will call you for your appointment. In the unusual circumstance that you have not been called and it is more than 30 minutes after your appointment time, do let the receptionist know.
If you are unable to attend your appointment please call the number on your appointment letter or the appointments office: 01782 676676.
Our clinics are located in the cancer centre due to availability of space.
One of our specialist doctors or nurses will first take the full details of your symptoms and how they have affected you. A medical examination might be necessary, but you will always be offered a chaperone if you would like one.
It is likely that you will have some blood tests. There is a phlebotomy service based within the clinic.
Since these conditions tend to be complex, the appointments are necessarily thorough and long. Please allow 1-2 hours for your first appointment with us.
Please make sure you bring a list of your current medication.
In the clinic we look after patients with a variety of immune deficiencies including Primary Immunodeficiency (PID).
These are a group of over 300 different conditions that affect how the body's immune system works. People affected by PIDs have parts of their immune systems missing or not working. This leaves them with reduced or no natural defence against germs such as bacteria, fungi and viruses, which surround us every day.
The consequences are that people with PIDs get infections more often than is normal. They can take longer to get better when they have antibiotic treatment and the infections can keep coming back.
Susceptibility to infection is one of the most common symptoms of PIDs. Often PIDs are diagnosed early in a child's life. However, signs of immunodeficiency can also occur in older children, teenagers or adults.
A small proportion of patients may need regular immunoglobulin treatment, which can be provided either at home or at hospital.
Hereditary Angioedema is a rare but potentially life-threatening inherited condition. HAE symptoms include episodes of oedema (swelling) in various body parts including the hands, feet, face and throat. Other symptoms may include severe abdominal pain and vomiting.
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We support patient self-management of these attacks.
Chronic Granulomatous Disorder Society
European Academy of Allergy and Clinical Immunology
British Society for Immunology
Primary Immunodeficiency UK
UK Primary Immunodeficiency Network
UK Patient Immune-deficiency Patient Support
We hold regular coffee mornings for patients on regular treatment with our service. This allows you to get together with other people on the same treatment, compare notes and ask questions. Please ask more about this when you come to clinic or look at the notice board in the waiting area for the next date
Making the most of your appointments
Practical advice for taking the stress out of hospital appointments and making sure you get the full benefit from the important time you spend with your doctor and nursing team.
Whether you’re meeting your doctor for the first time or you’ve seen them on many occasions previously, it’s good to be prepared.
Make notes in advance of your appointment that include:
• any medicines and pills you take, or bring them to the appointment with you
• any symptoms that concern you (aches, pains or feelings)
• when the symptoms started and what makes them better or worse.
The dates of any recent illness.
You can ask your GP to print out a list of appointments and medicines you or your child has received.
If you require an interpreter or any other communication aid, speak to the hospital in advance of your appointment so that the necessary arrangements can be made.
Plan your journey to the hospital, building in extra time for parking if you’re travelling by car.
Arriving for your appointment with time to relax and gather your thoughts is worthwhile.
Write down your questions and concerns
Write a list of questions you would like to have answered, with the most important ones at the top. That way, if your appointment is short, you’ll be sure to get your most pressing queries answered. Questions that remain unanswered could perhaps be emailed to your doctor or if not urgent left until your next appointment.
Take someone with you
Hospital appointments can cause stress and anxiety. Taking someone with you, such as a friend or relative, may help to relieve any nervous tension. They can offer emotional support, think objectively about what is being said, and listen and take notes while you ask questions. If you do ask a friend to accompany you, gently explain to them that unless the doctor directs any questions or requests opinions from them they are there for support only, because the doctor will want to spend time talking to you. It’s your right to have someone accompany you, so don’t be dissuaded by a doctor or anyone else.
Be on time and don’t get stressed if the clinic is running late.
If on arrival for your appointment you discover your doctor is running late, remember that the most likely reason is because someone else is
getting the help they need. Take something to
keep you occupied in case you have to wait to
be seen, and try to keep calm. The receptionist
should be able to give you an idea of the waiting time.
You may feel angry and frustrated at times, but it’s vital to try to stay positive, especially when you’re seeing the medical team. This doesn’t mean you can’t show your emotions or explain how difficult you’re finding something, but focusing on being positive and removing extreme emotion from a situation may help you
get what you need. As time goes by and you deal with more and more doctors, you’ll get better and better at communicating with them.
What you have to say about your condition and your thoughts about how to manage it are just as vital as what the medical team is doing.
Take notes during your appointment
Taking notes during your appointment will help you to recall what the doctor has told you. If you don’t want to make written notes, record the appointment with your smartphone or get a family member or friend to write down the major points for you. This will enable you to review the appointment at your leisure once you’re in your own (less stressful) environment. You also have the right to request a copy of the doctor’s notes.
Ask for visual prompts
Your appointment may involve being given explanations about something that’s happening in your body or a procedure that’s being planned. If you’re having trouble visualising exactly what is being explained, ask your doctor to show you a picture or draw a diagram to help you understand what they mean. Ask them to write down the name of any complicated medical terms, too.
Ask how you can learn more
Ask your doctor if they can recommend a book, pamphlet or website (e.g. the PID UK website: www.piduk.org) about your condition or the treatment you’re going to receive. The more understanding you have, the more effective you‘ll be in helping to treat and manage your condition.
Remember, if you believe you are not being dealt with properly, then you can complain.
You can find further information on this at:
Before you leave your hospital appointment,
make sure you’re happy with the information
you’ve been given. Use the following checklist
as a prompt for your questions:
• I would like to check that I understand what you said (then repeat back what the doctor has told you).
• Can you explain it again, please?
• Could I have a copy of any letters sent to other doctors?
• What are these tests for?
• How and when will I get the results?
• What do you think is the best course of treatment for me?
• Are there any side effects or risks?
• How long will I need the treatment for?
• How will I know if the treatment is working?
• How good is this treatment?
• Have you treated similar cases, and if so, what was the outcome?
• What will happen if I don’t have any treatment?
• Are there other things I can do to help myself?
• What happens next?
• Should I come back and see you again, and if so, when?
• Who should I talk to if I am concerned/ if things get worse?
• Are there leaflets about my condition/ this procedure that I could read?
Remember to write down your doctor’s and pecialist nurse’s name, and the email address and telephone number of the nurse and department’s secretary. These may come in handy in the future.
After many years of endless chest infections (and occasional hospital admissions) my life revolved around constant visits to my GP with more and more antibiotics and steroids being prescribed with each visit. I felt exhausted and slept many hours during each day and my social life was almost at a standstill.
What a relief it was to have an appointment to see Dr Sarah Goddard at the Royal Stoke Hospital, because I was finally getting to see someone who could help me. I had blood tests prior to the appointment and I was quite nervous going into my consultation. Dr Goddard immediately put me at my ease and explained that my immune system was so low that I could not fight the continual chest infections. She explained that the treatment I was about to start was called Gammaplex which is a solution for intravenous infusion, which was to start within a few days.
There is no pain (apart from a tiny scratch as the needle is inserted) and one sits in a comfortable chair for the duration. My infusions last for about four hours but once over I am able to drive home.
Initially, it was a shock to my system and I had a few minor side effects but after the third treatment I started to feel so much better as my lmmunoglobulin levels increased so the tiredness decreased, but the most amazing thing to happen was that within a few months my chest infections had lessened considerably too. I am now over 18 months into my treatment and I rarely need to take steroids and my energy levels have increased considerably.
I do believe in self-help too, so anything I can do to help the treatment work can only be a good thing so I exercise regularly by walking four miles three times a week. I also joined a Health Club to take advantage of their swimming pool which I attend three times a week. I swim underwater to help build up my lung capacity and the Asthma tests at the hospital have proved this to be working well.
With regular blood tests and consultations with Dr Goddard and her team and also the nurses who administer my infusions every three weeks I feel am being really well looked after and I send my sincere thanks to them all for giving me a new life.
Why are my infusions being stopped?
Immunoglobulin (Ig) is purified from donated blood and is called a blood product.
We are always very cautious about using blood products as there is a theoretical risk of infection, although we believe that all viruses and other infectious agents are removed. All Ig has to be imported to the UK at the moment to avoid any possibility of infectious agents called prions being passed via Ig. For these reasons Ig is a scarce and precious product. As you know Ig has to be given by infusion, which may be inconvenient and may cause some side effects. We therefore always review patients regularly to make sure they still need it.
We will stop your Ig if we believe there is an alternative option that would be better for you, such as a regular antibiotic. Sometimes we are not certain if Ig will improve your symptoms and the only way is to give a trial of Ig and then stop it and compare your symptoms when you are on the infusions and afterwards. Finally, sometimes your immune system may recover, and the only way to find out is to stop the infusions and retest your immune system.
How long does it take for the Ig infusions to wear off?
It takes about 3 months for your body to clear the Ig from the infusions.
What if I get a serious infection and the antibiotics don’t work?
In most cases you will be asked to take a regular antibiotic, such as doxycycline or azithromycin. This is called a prophylactic antibiotic. You must take these antibiotics continuously. Most people are aware of government advice to avoid taking antibiotics unless necessary. This is good advice to prevent build-up of resistance to antibiotics in the population. However, because your immune system is not working normally, you are at risk of bacterial infections and need antibiotics. Taking a regular antibiotic will prevent many infections and we will give you an alternative type of antibiotic to keep as a standby and this will prevent any problems of antibiotic resistance.
What should I do if I get an infection?
If you develop symptoms of infection such as a cough, shortness of breath and fever:
1. STOP your regular or prophylactic antibiotic
2. START taking your standby antibiotics
3. Make an appointment to see your GP to be assessed and replace your standby course
4. If possible send a sample of sputum to the hospital. This will help us to understand more about the cause of your symptoms and whether the Ig is helpful or not.
5. RESTART your regular or prophylactic antibiotic when you have completed the standby antibiotic course
6. Record details on your Home Infection Record
For home therapy patients -As usual, do not infuse immunoglobulin when you are unwell, even if you have some at home still. It can cause more severe side effects and will not help you get better any more quickly.
I still have some Ig at home, shall I return it? (Home therapy patients)
Unfortunately we cannot use any of your immunoglobulin for other patients. If you have some boxes of immunoglobulin left at home, then keep these safe and if you need to restart infusions they can be used.
I am worried that I will get severe or frequent infections despite the prophylactic antibiotic?
Some people will need to restart their Ig infusions. We will book you frequent clinic appointments so that we can check how you are. However please contact the immunology nurse on 01782672504: if you have a severe infection that does not get better with your standby course of antibiotics if you have to go to hospital
If you need to take more than two courses of standby antibiotics before your appointment