Your NHS journey

Who's who?

Meet the team whose help will be on offer:

1. The GP

   Your GP is likely to be your first port of call. If your GP suspects you have Ankylosing Spondylitis, he or she is likely to refer you to a rheumatology specialist to confirm your diagnosis and manage your treatment.

2. A rheumatologist

   A rheumatologist is a doctor who specialises in treating conditions that affect joints and muscles. The rheumatologist will take a detailed medical history and carry out tests, such as X-rays and an MRI (magnetic resonance imaging) scan, to help him or her decide on what’s causing your symptoms. Once you are diagnosed the rheumatologist will recommend a treatment and oversee the long-term management of your condition.

3. Specialist rheumatology nurses

   These are nurses who work alongside rheumatologists in hospitals. They might also be called clinical nurse specialists, rheumatology nurse practitioners or liaison rheumatology nurses. You might see a specialist nurse when you go for follow up appointments in hospital, before you see the rheumatologist. The nurse is trained to monitor your condition and may carry out tests and ask you about how you are getting on. Some specialist nurses are also trained to examine joints, give joint injections, review tests, and even change treatments if needed. They will work closely with your rheumatologist.

4. An occupational therapist

   An occupational therapist specialises in helping people manage their day- to- day activities and adapt their lifestyle to minimise the impact of the condition on their home and work life.

5. A physiotherapist

   A physio uses exercise and other physical treatments – like massage or heat packs – to reduce painful symptoms and improve flexibility. They help people with ankylosing spondylitis to maximise an active life both at home and at work. Some physiotherapists specialise in treating people with inflammatory conditions such as ankylosing spondylitis.

6. An orthopaedic surgeon

   This is a specialist doctor trained in diagnosing and treating conditions that affect bones, joints and soft tissues. If your rheumatologist thinks you might need surgery to have a joint replaced you will usually be referred to an orthopaedic surgeon.

7. An ophthalmologist

   This is a specialist who is responsible for examining, diagnosing and treating diseases and injuries of the eye. You may be referred to an ophthalmologist if you’re having problems with your eyes as a complication of ankylosing spondylitis.

8. A gastroenterologist

   A gastroenterologist is a doctor who specialises in diagnosing and treating conditions related to the gut, or gastrointestinal tract. You may be referred to a gastroenterologist if your ankylosing spondylitis is causing you to have bowel problems.

Seeing your GP

If you have been getting painful and stiff joints you will need to see your GP. He or she will ask you questions about your health in general and about the symptoms you have been getting. Your GP will probably look at and feel your joints.

Referring you to a rheumatologist

If your GP thinks you may have ankylosing spondylitis he or she will usually refer you to a rheumatologist at the hospital. The rheumatologist will ask you detailed questions about your medical history and whether anyone else in your family has had symptoms or been diagnosed with ankylosing spondylitis. You may need to have an x-ray and an MRI scan of the affected area to get a clearer idea of what is happening in your joints. Specific blood tests aren't usually helpful in diagnosing ankylosing spondylitis

How is ankylosing spondylitis diagnosed?

A number of assessments are used to help diagnose AS, measuring any pain, limited movement or swelling in key joints.

These may include:

• Physical examination by your nurse, physiotherapist or doctor to assess your flexibility and joint tenderness
• A general history of eye or bowel problems in the past Blood tests such as the erythrocyte sedimentation rate (ESR), which measures the level of inflammation in your body
• A genetic test to identify if you have the HBL-B27 gene. Many people who have this gene go on to develop AS. About 90% of people with AS in Europe have this gene
• X-ray or MRI scan of your lower back to help your healthcare professional determine the degree of damage, if any, and to measure the progress of your disease
• Ultrasound to help your healthcare professional to assess any inflammation in your lower back

Assessment of your AS

There are a number of ways in which ankylosing spondylitis is assessed when a diagnosis is being made. You may have physical examinations by your nurse, physiotherapist or doctor to assess your flexibility and joint tenderness. Blood tests may also be used to assess your AS, e.g. erythrocyte sedimentation rate (ESR), a blood test that measures the level of inflammation in your body. There is also a genetic test which can identify if you have the HBL-B27 gene – about 90-95% of people with ankylosing spondylitis in Europe have this gene. Ongoing assessments may also be carried out to see if there are any changes in your condition. One or more of the following assessments are normally used.

1. Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)

   BASDAI measures the extent of five main symptoms: • Fatigue (severe tiredness) • Spinal pain • Joint pain/swelling • Areas of localised tenderness • Morning joint stiffness The score, calculated by a healthcare professional, is based on answers to six questions. It will record a score between 1 and 10. A higher score indicates more disease activity.

2. Bath Ankylosing Spondylitis Functional Index (BASFI)

   BASFI measures the impact of AS on your ability to carry out everyday tasks. The score (between 1 and 10), calculated by a healthcare professional, is based on answers to ten questions. A higher score indicates a greater impact on your ability to carry out everyday tasks.

3. Bath Ankylosing Spondylitis Patient Global score (BAS-G)

   BAS-G assesses the effect of AS on your wellbeing over the previous week and the last six months. Based on answers to two questions, a healthcare professional will calculate the score (between 1 and 10). A higher score indicates a greater impact on your wellbeing.

4. Bath Ankylosing Spondylitis Metrology Index (BASMI)

   BASMI measures the impact of AS on the spine’s mobility and on your physical ability. A healthcare professional will assess the spine’s flexibility and take five clinical measures. The higher the score, the more limited movements are. It is expected that the BASMI score may get higher over time as the disease progresses.