If you’re well, going for a CGD check-up once or twice a year may seem unnecessary. But it’s always a good idea.
Check-ups can spot any problems early, so you can sort them out quickly and easily. It’s important that you don’t let problems build up. Another advantage of regular check-ups is that your doctors and nurses may pick up on an issue you hadn’t thought about.
Where do check-ups take place?
In the UK, adults have their annual check-ups at the CGD clinic at the Royal Free Hospital in London. These are in addition to appointments at your local hospital.
Royal Free appointments are part of the NHS’s ‘shared care’ system. You’ll remain a patient of your local consultant, but you get the benefit of seeing a CGD specialist too.
Children have their check-ups at Great Ormond Street Hospital in London. A Transition Clinic for people aged 16 and over who have primary immunodeficiency disorders takes place every quarter at Great Ormond Street Hospital. An adult immunologist and specialist nurse from the Royal Free Hospital sees these patients into adult life.
It may be tempting to skip your annual appointment, particularly if you’re busy, feeling well or don’t want to take time off work or make a long journey. But it is vital to go – the care you’ll get at the Royal Free will help to keep you in the best possible health.
What are check-ups for?
Check-ups give you the opportunity to:
– Discuss any problems in confidence
– Get treatment for symptoms
– Take advice on how to prevent infections
– Get test results. These will also go to your GP, your local immunologist (if you’ve been at a specialist centre) and anyone else you’ve asked to receive them. That means everyone involved in your care has the most up-to-date information, which is important if you become ill. It’s helpful to bring letters or results from local appointments to your check up.-Find out about research or clinical trials that may help people with CGD.
Who's on the Royal Free team?
Immunology consultant Dr David Lowe runs the CGD clinic. Other staff include Dr Siobhan Burns and clinical nurse specialists (CNS) Andrew Symes and Helen Braggins. Most months Dr Cate Orteu, Consultant dermatologist, is also in the clinic. The team is geared up to provide an excellent ‘one-stop’ service to deal with any problems you may be having.
How do you hear about appointments at the Royal Free?
You will get a letter with details of your appointment. Andrew Symes, the immunology specialist nurse, will be able to answer any questions about the service.
Find out how to get to the hospital.
The CGD clinic is held on the second Wednesday of each month.
What happens when you get there?
The first thing you’ll be asked to do is register. You will need to confirm all your contact details and make sure your GP’s details are up-to-date. One of the nurses will weigh and measure you before you see the CGD team.
After seeing the doctors you will most likely have a blood test and may go for an X-ray, a CT scan or a lung function test, if necessary. These departments are close to the CGD clinic, as is the pharmacy if you need to visit it to collect medication after your appointment.
What Dr Lowe says about the clinic:
“The Royal Free Hospital is one of the largest centres in the UK for primary immunodeficiency. We provide care for the majority of adults with CGD in the country”
“CGD patients who visit us have multidisciplinary clinical assessments with an immunologist, dermatologist and clinical nurse specialists.”
“Sometimes we also do joint consultations with a gastroenterologist or respiratory specialist, depending on what the patient needs.”
“We aim to provide the necessary monitoring, investigations and treatment to ensure that CGD patients get the best care possible.”
Contact details
Dr David Lowe
Phone: 020 7830 2141
Email: david.lowe7@nhs.netAndrew Symes
Phone: 020 7830 2140 or 020 7794 0500 (extension 34425)If you’re receiving benefits, you may be able to claim money for travel to the clinic. Please ask for a claim form while you’re at the Royal Free.
You may decide to travel the day before. There is a Premier Inn a three-minute walk from the hospital, which costs around £80 to £90 per room per night.