Long term health conditions

Getting on with your healthcare team

Consultants, nurses, physiotherapists and other health staff can all play a very important role in helping young people understand their condition and how it needs to be treated. Most of the young people we talked to have lots of experience in dealing with health professionals and attending consultations. In this section young people talk about their healthcare team and about what they have found worked or didn't work - for them.

What makes a good doctor or nurse?

In a young person's eyes a good doctor or nurse is someone who gives choices in terms of medication and treatments; who is caring and supportive even if there are differences in opinion, and who is honest about what could happen in the future. They also like doctors and nurses who talk directly to them rather than their parents. It is important to them to feel treated as a young adult rather than as a child. A good doctor or nurse is also relaxed, friendly and approachable, puts the patient at ease, provides reassurance, listens to concerns, is well-informed and is willing to answer questions. 

The young people we talked to found nurses an enormous support and described them as chatty, friendly, and easy to contact. They also provided useful information and were usually seen as the people in the medical team with a sense of humour. Many said that their nurses were less formal than their doctors so were more approachable and better at explaining things in an 'easy to understand' way. Several young people indicated that it took some time before they were able to see a specialist nurse. One young woman with epilepsy said that she still doesn't have a specialist nurse. Another woman in her early 20s was only recently referred to a nurse but has been living with asthma since the age of seven. She had not known that she could be seen by a specialist asthma nurse.

Continuity of care

Many young people stressed the importance of seeing the same people each time they attended clinic. Getting to know the team and building a good open relationship with them reassured young people that they were getting the kind of individualised care that many said they wanted and could trust. One young woman with cystic fibrosis said that her team is like 'family' and because she has been seeing them for so many years they have actually become her friends. Several indicated that they have taken part in charity events like the Great North Run on behalf of the Cystic Fibrosis Trust or that their parents are involved in fund raising events alongside members of their care team. 

When young people had to see different consultants at their clinic they sometimes felt the appointment was wasted because the new doctor didn't really know them. Several said that this made it harder to develop good rapport and trust between them and their doctors. Advice from an unfamiliar doctor was not as welcome as advice from doctors they knew well. Some young people had seen several consultants at different times.

While many consultants were described as 'brilliant' because they inspired trust and confidence, a few young people felt unable to open up and talk to their consultants about their worries and feelings. 

One of the most important things for young people is to feel reassured that they are getting the best available advice in terms of knowledge and expertise. One young woman with epilepsy said that her condition became better controlled after she was referred to an epilepsy specialist. As a teenager she neither knew that she was entitled to see an epilepsy specialist nor that the aim of her medication was to stop seizures (fits) altogether. Another young woman, with scoliosis, is hopeful that things will improve regarding healthcare now that she has been transferred to a specialist. She already knows about the reputation of her new consultant because she has 'checked him out' on the internet.

Many young people found that their doctors and nurses provided a lot, if not most, of the information they needed and were more than willing to answer all their questions. One newly diagnosed young woman said that the information and instruction she received from her diabetes nurse made her feel secure and was not patronising. She would, however, have valued more information about weight gain. Several young women pointed out that as teenagers they lacked confidence to ask questions about issues that were relevant to them personally like alcohol, sex and contraception. (Also see 'Information and support').

When appointments are infrequent it can, if you are a young person with a health problem, be frustrating to forget to ask something if you feel that you have to wait until the next consultation. One young woman with type 1 diabetes said that more frequent appointments would have enabled her doctors to picked up earlier on the fact that she was not doing all her insulin injections. In contrast many young people said that they could phone, email or text their consultants and that they received a reply the same day. This helped them to feel more confident about managing their condition. (Also see 'Talking to doctors and nurses').

Not surprisingly, not all the young people we spoke to had entirely positive experiences. One young woman said that, in general, all the consultants she has seen in the last fourteen years have been either dismissive or bossy. Another young woman said that there is little the NHS can do for her because it doesn't have enough resources or time for patients. Young people that have experienced pain as an ongoing symptom said that sometimes medical professionals have made them feel 'a bit of a fraud and a liar' and that they have felt that if they cried it was seen as a sign that they personally were unable to cope with their condition.

Last reviewed July 2017.

Last updated May 2014.

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