Long term health conditions (young people)
Information and support for long-term conditions
We talked to people who had had their condition all their lives and others who were diagnosed as a child or teenager. So some people had learnt about their condition gradually, as they grew up, mainly through their parents, doctors and nurses. People who were diagnosed when they were older sometimes already knew something about an illness because another family member or a school friend had it too, or if it was a relatively well-known condition such as asthma.
When young people are diagnosed with a disease that may affect them for years to come there are many questions that they may want answered. It can be particularly difficult to take in all the necessary facts (what it is, how it will affect your life, what the different treatments are etc.) when you are shocked by the diagnosis or if you know little about the condition. People sometimes avoid information at this time because they hope that the condition will 'go away' if they ignore it.
She lacked basic information about epilepsy and its treatment. It was only when a new doctor...
She lacked basic information about epilepsy and its treatment. It was only when a new doctor...
Which other type of information would you have wanted from the doctors?
I think just basic information about what the condition was, and more information about treatment as well. With epilepsy and with a lot of the other conditions there's multiple treatments. You know, with epilepsy there are about maybe fifteen different drugs. And some will work for some people and, you know, others will be more suitable for other people. And I never knew that when I was first diagnosed. I was given one tablet, and I just assumed that was the best tablet and that was going to work. And I didn't know that there were other options. So for many years I was just on a couple of tablets and I didn't really push for anything more because I didn't really know there was anything better. And it was only when I met my current doctor, who provided me with more information, that I went on to a different treatment that, that really improved the epilepsy. So I would have really valued more information about what it was and about the medications, about what I was entitled to, how they could help me, that kind of thing.
So the weight problem you had, that went on for quite a while?
Yes, that's right. Because I stayed on that treatment for a number of years. And again I didn't realise that, you know, I could have, chosen a different tablet and the weight wouldn't have been an issue and, you know, I wouldn't have had to be unhappy for so many years because of it. So, yes, that went on for quite a while. And I do wish that I'd brought it up with my doctor and, you know, we could have changed the tablet and maybe not had those problems. So, yes, when I came off that tablet and chose another one, I lost a lot of that weight. And it really improved things. You know, I got a lot of self-esteem back. So that was a good time.
Several young people said that they wished they had been given leaflets, phone numbers or web site addresses to guide them, especially during the early weeks. The information needed often changed as people tried different treatments (see 'Finding the right medication') or as they got older (see 'Contraception and pregnancy').
Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks...
Has had information from the hospital, the Arthritis Research campaign and the internet. Thinks...
At first it was the hospital obviously. They advised us what the condition involved. The Internet's been a great resource particularly for finding out what medicines have side effects and what, what the medicine, the history of the medicine is because you're prescribed them and you think, 'But what is it?' If you just put in on the Internet there's lots of, you know, material out there. There's also the CCAA website which is useful. And the Arthritis Research Campaign is quite good as well. So I'd say that the Internet's been the main secondary source of information apart from the hospital. And [city] 's also issued lots of leaflets and provided on various aspects of arthritis from just. They gave us one to give to school. They've given us one that's all about taking control of your medication. Just growing up in general. So leaflets and the Internet really the main secondary source of information apart from the hospital.
How have you found the information from the Internet?
A lot of it's relevant but some of it's aimed at adults not children so it's just picking out the good stuff but it's general across the Internet really.
And you have done, so you have done the search, the Internet search or your parents?
Both of us together. Me and my mum really just, you know, had a look what. Like when I went on Embrol had a look at that. When I went on Methotrexate had a look at that on the Internet. So it's been both of us really just interested to have a look what's out there.
I think there should be more publicity of what resources are available. I don't think it's a lack of resources, it's a lack of promotion. Because particularly if you're not at a big clinic like [city], not all people are going to be aware of what's available. So if it's publicised more I think that'll maximise the resources that are available which are very good. I found to be very good. So I think it's more about promotion of what's out there and than improving the material that's available.
Thinks that people should be given written information when they are diagnosed and also have...
Thinks that people should be given written information when they are diagnosed and also have...
I think it would be useful to have some written information available because you know when people are diagnosed and maybe if they're given a pamphlet and then just quite regularly really because people as they grow older they might have different questions. And you know they might sort of discarded the information the first time. I think it's just important to keep giving people the written information but then also offer them the support of the nurse and you know people that they can actually talk to because people probably don't talk to their GPs about it. And the GPs probably don't ask those sort of questions, well the sort of questions that the nurse would. And give you all the information that you need. So yeah I do. I think it would be useful for people to be given more information at the outset and then sort of as they get older really.
Do you think that there are different needs or new needs as you grow older regarding managing asthma?
I suppose as you get older you, you do have different questions because you aren't, you don't really because you aren't. You don't really think about why it's happening and what your triggers are and things when you're younger. You just accept that that's happening and you just want a cure for it. And when you're older you want to understand about why it's happening and, so you can be in control of it I suppose. I think when you're younger your parents are the ones who are more interested and they look after you. And then when you're independent you, you want to know the best way of doing things really for yourself. So yeah.
Doctors and nurses provided a lot of information and were usually willing to answer questions - though it was sometimes hard to know what exactly to ask. A young woman said that knowing that she could call her specialist diabetes nurse was very reassuring and a young man said that his doctor told him everything he needed to know. Another said that doctors need to be patient with teenagers who may act as if they know everything but really need time to absorb new information before they can ask appropriate questions. A person with sickle cell disease said that doctors might be a good source of information, but that sometimes they didn't necessarily listen to them. People who had lived with their illness all their lives said that doctors sometimes wrongly assume they know all about it. They need a chance to ask questions without feeling foolish.
Some genetic conditions - like sickle cell disease and cystic fibrosis - had been referred to in young people's science lessons at school. A young man with HIV said that the sexual health information he had been given at school was all about biology and pregnancy - and as a result he knew too little about the broader aspects of sexual health.
Says that young people should know where sexual health (GUM) clinics are and what they need to do...
Says that young people should know where sexual health (GUM) clinics are and what they need to do...
Parents are usually a major source of information, although young people tend to want to find out things for themselves as they get older. Some parents got involved in voluntary groups and fund raising - one even researched and wrote a book about her child's condition. Parents, children, teenagers and young people often each want to know about different things related to the condition so some organisations have different sections for each group.
People often looked for more information on the internet, in books and through the national support organisations associated with their condition. Some wanted facts and figures; others prefer to hear about other people's experiences. Many people immediately looked on the internet for health information and support. They also used chat rooms, email and social media.
Her mum found an internet group for young people with ME. She felt scared to ask the GP for...
Her mum found an internet group for young people with ME. She felt scared to ask the GP for...
It can be very reassuring to hear that others have had similar experiences - whether they are...
It can be very reassuring to hear that others have had similar experiences - whether they are...
Is the Internet something that you've used?
Yeah, I've dabbled. I've looked around on the Internet. And read different articles and in fact my GP's emailed things off the GP Internet or with the GP whatever. I think it's really important when you need, what something happens and you can just dab into the Internet and just read somebody's else or read whatever it's instant reassurance. And again it's profound when you're in a world of grey or you know or perceived black, sometimes it can be you know at really, really enlightening. It makes a huge difference.
Some warned that even though the web contains masses of fascinating information you need to be careful to use trustworthy sites. One young woman pointed out that some sites are just trying to sell dubious treatments. She said, “ A lot of it is trying to sell you a specific course of treatment that is going to, what was it? 'Decrease your scoliosis curve by half'. It will also decrease your bank balance quite a lot because it's so expensive.”
Sometimes information can be scary - especially if there is a reduced life expectancy associated with the condition. A person with sickle cell disease told us that she had stumbled on a website which contained depressing facts and decided not to look at the web again.
Originally learnt about sickle cell disease from her mother. She has looked for information on...
Originally learnt about sickle cell disease from her mother. She has looked for information on...
Mostly my mum and probably her through the doctors and she's read up about it. When I, when I got older she, I stopped going for hospital as much and my mum was able to look after me at home. And then as you get older you, you know the things that, like if it's cold outside and say if your friends are going out and they're not wearing a jacket you know that you have to wear a jacket. Otherwise if you get too cold then you're going to get ill. So in that sense I could take care of myself but if I did get ill because it happens my mum can look after me at home to a certain point with the medicines that I take. And if I'm taking the highest level of medicine and it's not working for me then I know that I have to go into hospital.
I said sometimes I don't listen to the doctors so maybe I don't know if that's a good way because other people might not listen as well. Maybe giving out like letters or something or holding. I suppose they do hold functions and stuff. That kind of thing.
Have you looked on the Internet for information or not?
I think I did when I was a bit younger but I think the information that I came across of sickle cell more or less tells you you're going to die at a young age. So it wasn't very encouraging for me to go back and look at more information [laugh] because the information I found was quite negative information but I don't know if there are and websites to go on or if I just Google 'sickle cell' the first thing that comes up. I just clicked the first thing that came up and it was a bit negative so I didn't really go back.
How did you feel about finding this information? Were you scared or?
I was upset, upset. I think I was definitely upset. So I just never went back to look at it again [ha].
People do not always want a lot of health information - some told us that they preferred to concentrate on other things and not feel that they were being defined by their condition. There is more to life than illness and it could be boring to think about it too much.
Last reviewed July 2017.
Last updated July 2017.
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