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…

Age at interview 29

Gender Female

Age at diagnosis 15

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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.

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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…

Age at interview 17

Gender Male

Age at diagnosis 7

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Where have you found information about arthritis at a young age? Who has provided you with that information?

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.

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Thinks that people should be given written information when they are diagnosed and also have…

Age at interview 24

Gender Female

Age at diagnosis 7

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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.

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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…

Age at interview 26

Gender Male

Age at diagnosis 17

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I think you’you know, at 17 I was very na’ve, I was very young, very believing. And when I was lacking confidence it was because I just didn’t have all the knowledge. I wasn’t worldly enough, I was just you know kind of, newly arrived and wanted to experience life and learn as much as possible. But if you don’t have all of the information and knowledge at school you know it boils down to luck. It’s like a national lottery that you get a teacher that’s able to talk about these issues with you and that’s not how sex education should boil down. Everyone should know where their local GUM is, know where you get tested. Know what service is available in case it is a positive result. But even when you access medical services or, you know you speak to medical professionals and you want to get the best advice, because you’re at such a young age sometimes they want to protect you, they don’t want to just give you the information and that was what happened to me.

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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…

Age at interview 28

Gender Female

Age at diagnosis 19

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And that’s when we started looking on the Internet. My mum actually looked on the Internet to find out information about M.E. and she wanted to find out if there were any kind of groups for just young people. And that’s when I got involved with AYM which is the Association of Young People with M.E. And that, they have like a website and they have a newsletter that they, they send out. It’s like a magazine now because I think it’s grown since I’ve been [laugh] involved. And that was just the first time that I realised there was lots of other young people who had it. And it was the first time that, you know, I actually had some leaflets that explained what M.E. is. And they, they produce a leaflet that shows the Functional Ability Scale which is essentially 0% is when you’re totally bedridden and you can’t do anything for yourself at all. And then it grades up to 100% which is obviously when you’re better. And that, on, on that ability scale you can have a look and see whereabouts your, you know, condition is. And at one point I was about 20% because I could just about sit up in bed but I couldn’t hold a glass and I couldn’t. You know I had to have somebody hold the glass up for me. But that grew, you know, I was very lucky. It improved quite quickly to around about 60% which is where you can go out for a short period of the day. And then it sort of hovered around there for a good sort of five or six years and now it’s gone right up, you know, to about 90% I think. And that was the first time I really had any information was just by going and looking for it. I mean my mum went to look for it herself. And it probably was because I didn’t ask the GP because I was scared of asking the GP and I was scared to ask, you know, that they might think that I was trying to sort of, you know, make a bigger deal of it than they wanted to. They, I felt like they really wanted to underplay it. And I felt like they really wanted to sort of, you know, that they were quite. I’m sure they were quite sure scared themselves because they didn’t know what to do. And that goes so against a doctor’s whole training isn’t it. They like to be able to cure you. And I felt like the GP was sort of saying, ‘Well there’s nothing we can give you. There’s nothing we can do for you. And I don’t think she felt very comfortable having to say that. So I didn’t want to then ask, ‘Well can I have some more information. Because I felt like, you know, I just felt nervous about doing that really.

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It can be very reassuring to hear that others have had similar experiences – whether they are…

Age at interview 28

Gender Female

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But having information available that of all sorts hits of everything of positive and negative I think reaches a person at the, you know, at the right time, can make a huge difference to them. If they are looking on the Internet, you know and they feel particularly positive about something and they read it, and somebody else felt positive about that thing it could be profound. And the same thing about feeling negative about something to be reassured because somebody else felt negative is as equally profound because it is reassuring that you are not going completely bizarre or potty. I think all of it is really important. Really, really important. You know and I’m rubbish at using support groups and support mechanisms but I think it works for people, everybody’s different and having all these things available means that it meets somebody’s needs if those needs are being met it’s so important.

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 Gps 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.

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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…

Age at interview 23

Gender Female

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Who had provided you with information about sickle cell and how to take care of your condition?

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].

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When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to…

Age at interview 21

Gender Female

Age at diagnosis 4

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Have you talked to the doctor about any concerns regarding life expectancy and things like that or have they told you about it?

That was probably one of the biggest things that I’ve had to get my head around because they don’t really tell you anything like that, apart from there was once when my consultant was away, and I had another, I think he was like, another Doctor came in, and he sort of blurted it out, and I’d never really been told about it. And again I was about 14 or 15, and he sort of blurted it out, and it was the first time I’d ever been told it, and it was, that was quite awful to hear, and everybody knew, everybody could tell, at the time, that you know, I wasn’t expecting it, and that was quite a big thing for us to deal with you know, I wasn’t very good at you know, going to my Mum, and talking about it to my Mum because I didn’t want to upset her, and I didn’t want to upset my family, so, it was quite a difficult time, maybe mid teens, when I was sort of like Oh n like, What have I got to look forward to and things like that, but, it’s just one of those other things that you know, it’s always so been in the back of your head, but you never really hear it, so it was quite difficult to get over, but you know, like being, and the net’s quite a useful thing, and you can talk to people, you don’t have speak to people face to face, you can talk to them about it, and you can hear different stories from people so, that really helped us, that’s probably what got us, got us through that sort of thing, people who understood what you were going through and.

People the same age as you and with the same condition.

Yeah, well if not older, so, or younger, like you’d speak to people who are young who are going through what you went through, like, oh you know 31 and am I really not going to live past 31? And you know, it’s awful, because you think to yourself, Oh, like these poor people and I went through that, but as long as you sort of talk about it, and get in touch with people and realise that you know, not, it’s an average its not, like, its not a sentence, so, that’s probably quite an important issue that a lot of people with CF would have to cope with.

And for you, I mean what helped was to be in touch, with through the net, with other people?

Yeah. I didn’t really let a lot of people know, like around us, I didn’t let a lot of people know that it was bothering us, but through, just the phone on the internet and forums as well were really helpful, you just post like a message, and like say your concerns, and then you go back maybe a day later, and they’ll be five or six people who, whove like says you know I’ve been through this, and you’ve just got to realise that you know, take each day as it comes, and, like you used to just get like letters of support coming back and it’s a lot more helpful, because if you feel like you can’t talk to people around you, it’s just that, a little bit more than like a resource that you didn’t have.

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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.

Peer support and support groups

Some of the young people interviewed told us that they definitely would not want to join a support group because they thought it would be...