Simon

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.

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.

Before an appointment, you could ask yourself what you want to know and write things down, including questions.

Gender Male

Simon wasn’t told that his telephone consultation could be any time between 9.30 – 12.30. He phoned the surgery to find out why he still hadn’t heard.

Gender Male

Clinics for young people would be a great way to share experiences and meet people going through similar problems.

Gender Male

Even if GP surgeries opened until 9pm on just 1 or 2 days of the week, that would really help people who are working. It might help the economy too.

Gender Male

Simon would only go to A&E if it was very serious. Ideally, he’d like it if his local surgery stayed open longer.

Gender Male

Simon never feels rushed by his GP. He’s approachable, communicates well, and is reassuring. He sent a letter to Simon’s college in case he felt unwell before exams.

Gender Male

Simon’s doctor wrote a letter for him to take before a school trip. He was easy to contact and phoned to check how his hospital appointments had gone.

Gender Male

Simon prefers booking online. It’s fast, convenient, and he can book a slot that suits his schedule. He likes seeing his own GP whenever possible.

Gender Male

It’s good for young people to learn the skills to manage their own health. Transferring from paediatric (children’s) hospital care to adult services can be hard.

Gender Male

Little comments that Simon overheard about him and other young people made him feel like avoiding some receptionists. It’s off-putting when they’re rude.

Gender Male

Making his own appointments gave Simon a sense of control over his care. He’d speak to the doctor and ask questions, and the GP spoke to him rather than his parents.

Gender Male

Continuity of care’ is important to anyone with a long-term condition. It means they don’t have to repeat their story to a different doctor each time.

Gender Male

Simon lives with arthritis. It was important for him to have a GP with an interest in this and to see the same doctor whenever possible.

Gender Male

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.

Gender Male

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.

Gender Male

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.

Gender Male

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.

Gender Male

Simon has been to the chemist for colds and sore throats and bought over-counter remedies. For more serious issues, such as his juvenile arthritis or Crohn’s, he goes to the GP.

Gender Male

The nurse listened to Simon and advised him about whether he needed to see the doctor that day or not. Simon has juvenile arthritis and Crohn’s disease.

Gender Male