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.

We hold real and virtual 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.

We accept referrals from primary care via the choose and book system and from hospital services.  We have consistently met national waiting list targets. All referrals are viewed by a consultant and where there is a clinical need appointments will be expedited.

During the pandemic we developed more telephone clinics and this has proved popular for some people.  You can usually choose how you prefer your clinic appointment, face to face or by telephone.

It is important that blood tests are done at County Hospital in Stafford or one of the other UHNM phlebotomy sites.  Blood tests carried out elsewhere are not available to the allergy team, and the blood forms used by UHNM are not always correctly interpreted by other laboratories, which means you may have to have the test repeated.

Telephone appointments

Telephone appointments can work really well, however please check the following points to make sure you get the most from your appointment:

  • we have the correct phone number
  • your phone is working and has reception
  • your phone accepts calls from unidentified numbers
  • you are in a quiet place, where you can talk privately
  • for young adults we need you to be on the call.  You are welcome to include your parent or guardian on speaker phone

We will often try and call back if we do not initially get a response.  However this is not always possible as we have a timeslot for each patient in the clinic. 

If you are unable to attend your appointment, please call the number on your appointment letter or the appointments office: 01782 676676.

Face to face appointments

Face to face appointments are useful, especially if you need examination.  As much as we are all used to telephones, many conversations just work better when you are there in person.

For information about car parking, visit our 'getting here' section.  Allow plenty of time for finding a space at busy times and sufficient change for parking.

We have appointments in the Cancer Centre as this is where there is space for our clinic. 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. 

Arriving for a face to face appointment at County Hospital: The outpatients department is on your right after you have walked through the main entrance and then right again off the main corridor on the ground floor.

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.

What happens in the immunodeficiency clinic?

One of our specialist doctors or nurses will first take the full details of your symptoms and how they have affected you.  You will be offered a face to face appointment if a medical examination is 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 if you attend in person.  Following a telephone appointment you will be sent blood forms with your letter.  It is important that you attend County Hospital phlebotomy service or one of the UHNM phlebotomy centres with the blood form.  You can book an appointment on line at: https://patientconnect.uhnm.nhs.uk/.  Blood tests done elsewhere go to other laboratories and we do not have direct access to the results.  Also, sometimes other laboratories do not interpret the blood form correctly and the test has to be repeated.

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.

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.

Learn more about PIDs from one of the primary immunodeficiency patient groups.

A small proportion of patients may need regular immunoglobulin treatment, which can be provided either at home or at hospital.

Watch a video about self-administration​

Hereditary Angioedema is a rare but potentially life-threatening inherited condition. HAE symptoms include episodes of oedema (swelling) in parts of the body including the hands, feet, face and throat.  Other symptoms may include severe abdominal pain and vomiting.

Click here for more information from the HAE patient organisation.

We support patient self-management of these attacks.

www.cgdsociety.org
Chronic Granulomatous Disorder Society

www.eaaci.org
European Academy of Allergy and Clinical Immunology

www.haeuk.org
Hereditary Angioedema 

www.immunology.org
British Society for Immunology

www.piduk.org
Primary Immunodeficiency UK

www.ukpin.org.uk
UK Primary Immunodeficiency Network

www.ukpips.org.uk.
UK Patient Immune-deficiency Patient Support​

The immunodeficiency UK website has some useful information about making the most of your appointments:

Dear staff
 
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.
 
Marjorie Thornbar

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

Download Home Infection Record

HAE score sheet

Shared care immunoglobulin record sheets

Management of HAE patient information

 

Winter is a difficult time for some of our patients with immune deficiencies.  Here are some handy tips to keep yourself healthier and better informed this winter (and beyond).

General tips:

  • get outdoors in natural daylight as much as possible
  • get a good night's sleep – go to bed and wake up at the same time every day
  • Eat well- try and get  at least 5 portions of fruit and veg into your diet every day
  • Keep warm- this is especially important if you suffer with chest problems.

Make sure that you:

  • receive your flu jab from your GP surgery
  • keep a course of antibiotics at home. These will usually be supplied by your GP. Ensure that these are in date and that you have enough for a 10-14 day course of treatment (as recommended by your specialist).
  • have the contact numbers of the delivery service handy (if you receive home delivery for your immunoglobulin)

   If you suffer with chest infections, it is important that you

  • Start your antibiotics at the earliest sign of infection. Remember that it is important to treat infections early. It is easier to get rid of infections if treated early.
  • If you have arrangements with the hospital or your GP surgery to get sputum/ spittle tested, take a sample before you start taking the antibiotic. Testing sputum after starting antibiotics is generally not helpful
  • Stop your regular antibiotic
  • Complete the course of antibiotic provided by your GP
  • Restart your regular antibiotic

 

    Immunoglobulin infusions during infections:

  • Postpone your immunoglobulin treatment until you have completed at least 3 full days of antibiotic treatment AND you start to feel better (if you are on home therapy)
  • If your immunoglobulin treatment is hospital based, call ward 202 (number 01782672642) to make sure that your infusion can be postponed if necessary
  • If you don’t start to feel better within 3 days of starting your antibiotic, please make sure that you contact your GP for advice