Seeing the GP: Advice and tips for young people

Simon

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Brief outline: Simon lives with juvenile arthritis and Crohn’s disease. He has usually had very positive experiences of GPs and thinks that ‘good continuity of care’ is essential for young people with long-term conditions.

Background: Simon is a university student. He lives at home with his parents. Ethnic background / nationality: White British.

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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. Simon has had a number of GPs over the years and most of his experiences have been very positive. He believes in ‘good continuity of care,’ which involves being able to see the same GP every time rather than repeating his story again and again to different doctors. 

Simon’s first GP (who helped diagnose the arthritis) looked after him for a number of years and was very good at keeping in touch with the hospital that treated Simon for arthritis. He recalls his GP being friendly and much like a ‘grandad figure,’ always knowing ‘how to get things moving fast’, which Simon believes is very important for young patients who can’t always speak for themselves. 

When Simon was around 8 or 9, his first GP retired and he was assigned a new one. Simon’s first doctor used to prescribe antibiotics whenever he got an infection as he knew Simon’s medical history well. His new doctor, though, was unfamiliar with it and recommended that he wait before taking medication. This led to a tonsillitis flare which affected Simon’s joints. He had to have them drained at hospital and steroid injections. He found this experience very difficult to deal with as a child – having to go to hospital appointments also meant missing out on important stages at school. 

Simon’s parents later heard about another GP at the local practice who was recommended by other people, and they asked to have Simon under his care. Simon is still with this doctor today and has been very pleased with the care, describing his doctor as ‘going the extra mile’. The GP involves Simon in decision-making and has supported him through childhood to young adulthood. He has offered him support before his exams and has always taken an interest in Simon’s life outside of illness. 

The GP is also good at chasing up hospital appointments and keeping on top of any new treatments and medications for arthritis. Simon feels well supported and that there is open, two-way communication. He feels he can contact his doctor at any time, even if this means out of hours. Simon feels that his GP knows him well and can give him good personalised care. This was particularly evident when he first noticed symptoms of Crohn’s but had a difficult time getting diagnosed at hospital; his GP made all the referrals and tried to speed things up in getting a diagnosis. 

Despite this, Simon’s local surgery is large and busy and he often sees whichever doctor is available on the day. A new online booking system at the practice, though, allows patients to see all the vacant appointments and which GPs are available each day. This means that Simon can book an appointment with his own GP as long as he can wait to be seen, which he believes has been a positive change. The surgery also offers patients emergency same-day appointments, which has been helpful when Simon has needed to be seen urgently. 

Simon advises young people living with long-term conditions to manage their health as much as possible by themselves. He began sharing his own thoughts and opinions about his health from the age of 11 or 12 when he realised that he is the best person to tell the doctor how he is feeling. He also recommends being prepared for appointments by keeping records and writing everything down, which makes it easier to tell a doctor what has been going on. Simon urges other young people not to be afraid of asking questions and to speak up if they are unhappy with any aspect of their care.

Simon advises parents of children with long-term conditions to be honest about every aspect of treatment and diagnosis in order to develop trusting relationships. He also encourages parents to prepare young people for adult services by teaching them about booking appointments, making repeat prescriptions, and preparing for appointments. 

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