People who are newly diagnosed with arthritis often want to learn about and understand their condition and how it will affect them in the long term. They may have questions about treatment or the impact arthritis can have on day-to-day living. Sometimes people want to know where to go for emotional support or how to tell family or friends that they have arthritis. There are lots of things that people feel they need to know and there are many places where they can go to find answers.
Doctors, nurses and other health professionals
Some of the young people we spoke to said that they relied on what doctors and nurses have told them about arthritis and the different treatments. They said that they could trust their healthcare team more than anyone else because they were the experts with the specialist training. Some described how they could phone, text or email their healthcare team whenever they liked. Usually a nurse would reply but the nurse would speak to the doctor if needed.
The people we talked to often stressed the importance of being confident around healthcare teams and asking lots of questions. Some said they went to the doctor and suggested possible new treatments that they had learned about from friends or on the internet.
When people try to learn about the medical side of arthritis it helps if doctors explain what the scientific words mean. Some said that they did not know what ‘juvenile’ meant for a long time and said it would have been useful to know earlier (juvenile means young people).
Some of the people we spoke to were happy with how doctors explained things. Others found the doctors difficult to understand and some relied on nurses to explain what was said. Some people felt that they did not have enough time with their doctors. Zoe said that she sometimes gets confused when doctors “go all science on her”.
People with medical or scientific knowledge or training understood the terms being used. Some wanted as much information as possible. Emma said she “asked for every information sheet under the sun”. People also emphasised how important it was for health professionals to tailor the information to the individual needs of each person.
To help people learn about arthritis healthcare teams sometimes give out leaflets or information packs to read, DVDs to watch, websites to visit or helplines to call. Sometimes people go to a “breakaway camp”. These camps are sometimes organised by doctors and nurses but charities also organise them. They usually last between a weekend and a week and involve outdoor activities as well as talks about arthritis.
People we spoke to often felt unhappy with the amount and type of information they had been given. Some said that there was too much information. Others said that they received no information at all.
Ryan said the language was sometimes too difficult to read. A common complaint was that the information was not written for young people. Tom said he was given a booklet that was “frightening” to read. It was designed for older patients who needed surgery, had heart problems or were using catheters (a tube to help with peeing).
Another problem was that the leaflets were not designed for specific types of arthritis, so people with systemic JIA or ankylosing spondylitis had to seek out information in different places.
Some found the information boring.
It was often parents who processed and helped people understand the information, especially if the son or daughter with arthritis was very young. Marie read the information and then told her son, Ryan, what she thought he needed to know. Marie did not want Ryan reading about the possible side effects of medication and getting worried. Some people said they only relied on their parents for information and did not want to search for themselves.
Some of the people we talked to were members of an arthritis charity, such as Arthritis Care or the Children’s Chronic Arthritis Association (CCAA). Sometimes charities cater for specific types of arthritis, such as the National Ankylosing Spondylitis Society (NASS). Arthritis Research UK also provides information for young people with arthritis and for health professionals. These charities often have websites with information on or a helpline people can ring if they want further information (see Resources). Some of the people we spoke to had used these helplines to find out about various things, such as disability living allowances (DLA) and information about treatment. Some charities send out information in the post or have magazines people can subscribe to. Some also organise camps and activities for people with arthritis and their families.
When it comes to using the internet people had mixed feelings. Some thought that the internet was a great help and did a lot of online research. They used the internet to find out about symptoms, medications and surgery. Sheri and Charlotte X used the internet to find out information about their consultants. The internet was also used for emotional support. By reading or writing blogs, chatting in forums or using Facebook and Twitter, people could get things off their chest and learn how others cope emotionally. They also enjoyed helping others learn about the condition.
Some people struggled to find relevant information on the internet. Others did not feel that they could trust what was written. This happened when the information was not written by medical experts, or because the information appeared inconsistent. Some said they went to the internet for help and came away even more worried.
Rob said that the websites were full of “doom” and negative stories. Kerrie found “all sorts of scary stories” when she first started browsing the internet for information.
Not everyone wanted to share personal information on the internet forums. Learning how to filter the information found on the internet was a key skill that developed over time.
School and studying
Sometimes people talked about how they learned about the biological side of arthritis by studying science and PE in school, college or university. Some university students read medical research papers on arthritis.
People who did not study science found the papers difficult to read. Catherine studied psychology. Through her studies she found a meditation technique that helped her cope with the pain.
When it comes to finding out about arthritis people said that “you learn as you go along” or you “muddle through” and gain experience.
Often people learned most about arthritis from living with the condition day-to-day. People developed knowledge about their bodies and limits overtime. People said it was important to “know your limits”, “pace yourself” and “make plans”. Parents talked about knowing their children better than anyone else and said they learned about arthritis by raising a child with the condition. Jazmin’s mum was very confident around doctors and was happy asking lots of questions. Jazmin said she learned to be confident by watching her mum.
Sometimes people do not remember how they learned about arthritis but assume somebody must have told them in the past.
Information services that hospitals offer can vary from region to region, but one thing that a lot of people we spoke to said is that things have improved a lot over time and that younger people have access to more information now than they ever have.