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.
Emma sees the nurse regularly for blood tests and reviews because she has diabetes. The nurse is knowledgeable and answers all her questions.
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:
Emma was told there and then that she had diabetes, and sent to hospital. It was a shock to get such a life-changing diagnosis.
After several appointments where JalÃ© had been told she was stressed, it was good to have a GP that referred her for tests. She needed a scan on a lump in her neck.
Simon’s mum noticed symptoms when he was 2½. He was referred to hospital for tests. It was a shock and hard having to miss school because of hospital appointments.
Caitlin’s parents had always known something was wrong. As she got older, her legs started getting weaker. Later she started losing strength in her arms and hands too.
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.
IBS symptoms are confusing. When Amy eats the wrong food, her stomach has spasms. She feels bloated but empty and needs the toilet.
Simon’s GP referred him quickly to hospital but it took 2 years before specialists tested him. If they’d tested him earlier, his Crohn’s might have caused less damage.
JalÃ©’s symptoms wouldn’t go away. It was hard to describe them and the appointments were rushed.
use words that are easy to understand instead of medical jargon and acronyms. Use age-appropriate language.
For younger patients, it’s better to talk in an easy to understand way. As Simon got older he started learning more about his condition and understood more complex words.
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
Young people have lots of pressures and expectations. They may be going through a roller coaster of emotions. Giving them information helps.
The emotional health of people living with long-term conditions can get pushed under the carpet. Patients shouldn’t feel guilty or ashamed about feeling stressed.
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.
It’s important to respect the knowledge patients with complex needs often have about their own health and care.
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.
More young people talk about their experiences of living with long-term conditions.