Hospitals run rheumatology clinics so people with arthritis can see their specialist doctors and nurses as outpatients (outpatients are people who do not need to stay in hospital overnight.) When people go to a rheumatology clinic they may be examined or have tests in order to monitor their arthritis, discuss their treatment and check for any side effects from medication. Clinics offer people a chance to ask questions and ask for advice about anything connected with their illness.
A paediatric rheumatologist explains what young people can expect when they go to a clinic.
A paediatric rheumatologist talks about patient confidentiality.
When people attend a clinic they are quite likely to have a physical examination and to be asked about how their symptoms have been. The physical examination involves a doctor or nurse looking at, feeling and moving the affected joints. It’s a good idea to wear suitable clothing when you go. When Zoe went to the hospital she wore skinny jeans, which made it difficult for doctors to examine her knees.
When Zoe went to a clinic she got her height and weight checked. If she had a physical…
Chantelle was weighed at the clinic and had her blood pressure taken. She filled in a…
Full physical examinations may not always be needed. People who had arthritis for a number of years said their examinations were sometimes quite quick. Sonia has not had an examination for a while.
People often need blood tests to make sure that their medications are not causing unwanted side effects. For example, methotrexate can damage the liver. Blood tests are used to detect early signs of liver damage. Some people went to the hospital to have their blood taken but others had it taken at home. Sometimes people had a cream to help numb the area before blood is taken. Although several people said they had got used to blood tests over the years, others struggled emotionally because they were afraid of needles.
Bradley’s blood was taken at home by a community district nurse who also gave him his…
Gemma stopped having blood tests when she stopped taking methotrexate. Even though the tests…
Ultrasound, X-ray and bone density scans
Some of the people we spoke to had ultrasound scans and X-rays to assess inflammation and potential joint damage. Others had bone density scans (DEXA scans). These scans are used to see how weak or fragile people’s bones are. Bone damage may be caused by the arthritis or may be a side effect of long-term steroid use (see Steroids). With advances in modern treatment it is rare for young people to experience permanent joint damage (see DMARDs and Biological therapies).
An x-ray it showed Dean’s jaw did not fit in the socket properly. He was told that he could have…
A person who has arthritis is now less likely to have surgery because treatment options have improved.
Cat had blood tests, x-rays and bone density scans to monitor her condition and determine how…
Dan’s bones have been weakened by steroids. He used to have a scan every two months but now…
Because certain eye conditions like iritis and uveitis are associated with arthritis eye examinations may also be needed.
A paediatric rheumatologist explains that young people with arthritis may get experience eye…
When Sara had an eye exam her doctor looked for inflammation. Sara was also asked to read from a…
When Jessica was younger she had visits from the homecare team after she was sent home from hospital. Nurses would check her temperature and blood pressure, examine her joints for signs of flares and make sure her mum was OK with giving her the medication.
When people went to clinics they talked with their doctors about how effective their medication was and whether the dose needed changing (or a new medication needed). Doctors tried to reduce Jessica’s dose when she was having a good patch and put up the dose if and when she needed it.
A paediatric rheumatologist suggests young write down any questions they have before going to a…
Michelle goes to an Anti-TNF clinic to have her medication assessed.
Sometimes people went to a clinic to have a joint aspirated. This means fluid around a joint was removed using a syringe and steroid injected. If people needed a joint aspiration or injection before their next clinic appointment they could contact a nurse or doctor and organise a date to come in. Being able to get in touch with doctors and nurses between appointments was something people really valued.
When Tom moved to a children’s hospital he could contact his healthcare team whenever he needed…
Kyrun’s struggled to get through to his doctors on the phone. He used a yellow card system at A…
Doctors, nurses and other healthcare providers
People had lots of positive things to say about their doctors and nurses. Specialist nurses are often the first point of contact, and people liked being able to build up a relationship with the same nurse. They also liked being able to contact their nurse or doctor by phoning, texting or sending an email. Kerrie said she had “a great relationship” with her doctor. She can contact her whenever she needs and said, “It’s nice to know I have the freedom to do that.” Lu said she could email her doctor directly and get a quick response.
Doctors and nurses gave medical advice and discussed treatment options. One of the main reasons for regular monitoring is to check if your current treatment is still working and discuss whether new or different treatments might suit you better. Bradley was pleased that his doctor was “proactive” and had a “plan of action” to treat his arthritis.
Having a good relationship with clinic staff was one of the most important things people talked about. Anna was pleased because her new doctor was gentle during joint examinations. Caitriona said her clinic had a friendly atmosphere even though the hospital kept cutting back the number of beds on her ward. Kerrie was pleased with her new doctor because he gave her more time than her old doctor did to ask questions. It was important to people to be given plenty of time, to be really listened to and to have trust in the staff to give them the best possible information. People who had care in different hospitals or different parts of the country were able to compare how some teams did this better than others (see Messages about arthritis to doctors and nurses).
Doctors and nurses sometimes gave out phone numbers and website addresses for support groups and charities. Kerrie said that her doctor helped her navigate the scary “minefield” of differing information she came across on the internet. She felt confident that she was getting the best support and information from her healthcare team (See Learning about arthritis and treatment.)
Discovering that your arthritis has got worse could make clinic visits a bit depressing, but Bradley explained how his healthcare team always gave him hope and reassured him that treatment these days has improved a lot.
A paediatric rheumatologist explains what to do if symptoms get worse.
As well as dealing with their medical care, some people said that doctors and nurses asked how they were feeling, talked about how they were getting on with life generally, and listened when people felt stressed or upset. If necessary they might put people in contact with a counsellor or psychologist; Lu found it really helpful to talk to a psychologist when she was a teenager. Dan talked to his doctor about being lonely. She found him volunteer work in the hospital.
Sometimes people saw a whole team of different healthcare professionals when they went to the clinic, including occupational therapists, physiotherapists, podiatrists (for foot care), eye specialists and psychologists. Sometimes student doctors or nurses were present too.
When Teresa and her daughter, Elly, went to a consultation there were 7 or 8 people in the room…
When health professionals discuss treatment at clinic visits, they may ask if people would like to take part in clinical trials for new arthritis medication. Clinical trials are carried out when we don’t know if a new treatment works better than existing treatments. (See also our young people’s site on Clinical trials and medical research and Clinical trials: parents’ experiences). Before they agreed to take part people were told about the trials by doctors and nurses and could ask questions. They were also given information packs that told them all about what they would need to do and any risks or possible side effects. Ryan’s mum, Marie, said there were too many medical terms and too much information for Ryan to read. She had to read the packs and use words Ryan would understand so he could decide if he wanted to take part or not. But other people felt they were given clear information.
People that agreed to take part in the trials often felt there were differences between how they were treated normally and how they were treated on the trial. This included feeling they had more time and attention, better information, closer monitoring, and quicker access to some tests. Study nurses answered questions if people were worried about the trial or potential side effects. People said that the study nurses were very friendly and knowledgeable. If they did not know the answer to questions they would speak to the doctor running the study. Ryan liked having a study nurse because he got to know the nurse and found her easy to speak to.