Seeing the GP: Advice and tips for young people

Here, people talk about:

•    what is a long-term condition?
•    young people’s experiences of being diagnosed
•    messages to GPs
•    young people’s experiences of living with a long-term condition

What is a long-term condition?
A long-term condition is a health problem that can’t, at the present time, be cured but can be controlled by medication and other therapies. Long-term conditions impact on a person’s life and need ongoing care and support. Examples include Type 1 diabetes, asthma, eczema, long-term pain, inflammatory bowel diseases such as Crohn’s disease, thyroid problems, irritable bowel syndrome (IBS), epilepsy, juvenile arthritis, kidney disease, and sickle cell anaemia.

Young people can be diagnosed with a long-term health problem at any age. This can be at birth or when they’re a few months old. Some people find out about their illness when they’re children, in their teens, or in their early twenties. GPs will normally be the first port of call for long-term conditions. They may diagnose the condition themselves or refer the person to hospital for further tests. For many long-term health problems, the ongoing care after diagnosis is organised (co-ordinated) by the GP and specialist nurses in the surgery. This can include helping to chase up tests and talking with the specialists as and when needed. Some people with long-term conditions need to have regular blood tests – these are often done at the GP surgery and the results are sent to the specialist. Young people’s experiences of being diagnosed
Emma was diagnosed with diabetes in 2000. She was tired all the time, feeling run down, and went to the toilet a lot at night. Her dad, who was a GP, suggested she see her doctor: Jalé rarely saw the GP until she was 16, when she had muscle twitching in her arms and legs. She saw several doctors about this until one of them found a walnut sized lump in her neck some months later. Jalé had to have her thyroid gland removed and lives with hypothyroidism. This is when the thyroid produces less thyroid hormone than it should, which causes the metabolism to run too slow. Metabolism is a process that the body uses to generate energy from food. Simon lives with two long-term conditions – juvenile arthritis and Crohn’s disease (a condition that causes inflammation of the digestive system or gut). He was diagnosed with arthritis at the age of three and Crohn’s at the age of fourteen, and sees his GP whenever he needs advice on managing these, in between visiting specialist doctors at the hospital. Simon believes that ‘good continuity of care’ is particularly important for anyone living with a long-term or ongoing condition. This involves being able to see the same GP every time rather than repeating his story again and again to different doctors. Caitlin had health problems as a child too. Her parents noticed that she couldn’t put her heel down or walk properly. She was diagnosed with a rare long-term condition called ‘Chronic inflammatory demyelinating polyneuropathy disease’ (CIPD), which affects her movement, muscles and breathing. She was 9 at the time and noticed that her arms and legs were losing strength, and she soon needed to use a wheelchair. Caitlin now has no movement below her neck and needs a tube to help her breathe more easily. While Emma called the GP her ‘first port of call’, for people with rarer conditions, such as Caitlin, that role was also sometimes a hospital specialist.

Amy, like several other people we talked to, found that it can take a long time to get a diagnosis. Both Amy and Emma pointed out that it can be difficult to know whether to go to the GP; in Amy’s case her symptoms kept coming and going, and Emma at first put it down to just feeling tired. Simon was diagnosed with Crohn’s disease at the age of 14 but he’d had symptoms for two years. It was frustrating being unwell but not knowing why. Jalé recognised she needed to go to the GP but was always told that it was stress. She felt that, ‘being a young person, it was quite difficult to get across what you were feeling’. She went to the doctors’ about six or seven times because of stomach pain and low energy levels, and was eventually diagnosed with an underactive thyroid. Young people’s messages to GPs
•    use words that are easy to understand instead of medical jargon and acronyms. Use age-appropriate language.  

•    talk to the young person instead of to their parent(s)
•    give young people all the information they need about their condition, including how it could affect them emotionally and where they can find support  
•    appreciate that there’s a lot of pressure on young people and even more on young people living with a long-term health problem 
•    involve young people in making decisions about their health, including tests, treatment and long-term plans
•    ask young people during the consultation (appointment) how they feel physically and emotionally
•    acknowledge how hard it might be for a young person to live with a long-term condition
•    listen to what a young person is saying. They might have found things that are helpful that doctors don’t know about, especially if it’s a rare condition. Young people’s experiences of living with a long-term condition
Living with a long-term health problem can be very challenging for young people as they’re at a time in their lives when they’re studying or starting a career, making new friends, having an active social life and relationships. Thanks to advances in the care and treatment of many common long-term conditions, more people can now lead a longer and more active life. 

See more young people talk about their experiences of living with long-term health conditions here.