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Long term health conditions (young people)

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. 

 

Has a very good rapport with her children's consultant and his direct approach inspired her to...

Has a very good rapport with her children's consultant and his direct approach inspired her to...

Age at interview: 21
Sex: Female
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Right. Paediatrics I started off with Dr. [name] and she was, I can't actually, I was I think, I was about 10 when Dr. [name] came, and she was good. She diagnosed me, obviously my family loves her. And then Dr. [name] came and we were kind of, I think I was wrapped in cotton wool till that point. Basically wasn't really aware of CF. I knew I had it, I had things sprinkled over my food, I had, I took these tablets, and that was about it, and I remember the first, the first clinic with Dr. [name], my Dad went along as well, because my Mum and Dad are divorced. And it was just horrendous [laughs]. It was awful, he basically said, 'Right this is what's going to happen, this, this, this', my life expectancy, and I was like 'what's going on?' I think I was crying my eyes out, my mum was, my dad wasn't happy.

How old were you?

I was eleven. I was quite, I should have been more aware of what I had, and I, but from then, it did get better I think, when he came in, it was telling us what we had. And this is what it could be like. But to give you a shock so we would start taking care, and his words were, 'You have to be a little bit more grown up than your friends to, you have to be able to know this, understand why and do these things, just to get past this time'. And you do get like the teenage years, and I was quite close to them, kind, we get on very well, I still, I'm not actually there anymore, and we still e-mail and I talk to him quite a bit. I've done the Great North Run with him a couple of times as well. It was good that he did that, he kind of inspired me to learn more about myself and what was going on so.

They've all got nick names.

You gave them nick names?

Yeah. Dr. [name]'s actually called 'Jesus', [name] is 'The Clown', because the first time I had an IV, I was distraught, and she decided to dance around the ward as a clown for us. She was a bit odd, she's like that. [name] I call 'The Care Bear' because she is so lovely and caring, and, my new nurse, [name], is, it's the first time I've had a man as a nurse, '[name]', he's very crude, he's actually quite funny, he just he has to censor things he says to most of his patients because it's a chest clinic, and they are quite elderly, and then I come in and its just, it's bizarre because everyone laughing and they're all hiding in a whole room and one of the nurses, she's a bit older, she walks in, and she'll say, 'Oh I don't want to hear it', she walks back out [Laughs]. Doctor [name], he looks like a thug, [laughs] he's got quite short, shaven head, he's always running around, he's a surgeon as well, and he's always just got a bag of crisps because he hasn't got time to eat. And he signs his letters 'Ali G'. Because he's called [name] but he signs Ali G, so he's a bit of a nutter. And Professor [name], she's lovely, she's always asking, because we've got similar interests, and she's got into diabetes because she loves metabolism, and that's kind of what I like doing at university.

 

He feels reassured by his consultant and diabetes nurses and at ease to ask questions. Trusts...

He feels reassured by his consultant and diabetes nurses and at ease to ask questions. Trusts...

Age at interview: 16
Sex: Male
Age at diagnosis: 11
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I go to [name] hospital. They've got a home care unit which is very good. Two nurses who do home visits and stuff to really help you.

So they go to your house?

Yeah. I think when I was first diagnosed I was having home visits like every day, they'd come every day, every evening to help me with my injections.

I think I can ask Doctors and Nurses any question you want. I go to a clinic, I think its every six months, or three months, and they, they look at my blood sugars and tell me what I need to change and things, but as I'm getting older I'm learning to do that myself now. Which is good, I can change my own dose now, according to what my blood sugars are like.

I don't think I've ever had anything really where I haven't agreed with them, because I know that they're acting in my best interests. And that's what they are trying to do, so, generally I just take their advice and trust them and that.

When I go to the clinic they ask how school's going and things. I think the doctors and nurses went into our school when I was first diagnosed to talk to the teachers, especially on trips away and stuff, they go in and talk to them, as it's important that the teachers know.

The nurses?

The nurses tell the teachers while we're away what to do if I had an accident or anything.

Okay. And you're able to contact  a member of your health care team if you need their advice?

Yeah, there is always nurse who I can  phone the hospital and they will bleep her to ring me, so I can, wherever I am, even in the middle of the night, I can be in contact with a nurse. Which is a great help, it's happened a few times.

Okay.

There's times where I've used that where I would have had to have gone to the hospital, and I couldn't have used that.

Okay. Are your nurses still in contact with your school or not?

I don't think they have been recently, I don't think there is really much need for them to be, because nothing has really changed, regarding school or anything.

But to start with after you were diagnosed?

I think they just talked to some teachers and, my form teacher and my head of year, about diabetes.

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. 

 

Says that the doctors and nurses she sees at the hospital for her sickle cell do really want to...

Says that the doctors and nurses she sees at the hospital for her sickle cell do really want to...

Age at interview: 17
Sex: Female
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I haven't really, haven't really been to the adult's one yet. I've got an appointment on the 24th of January and I'll be in the adults one then. But in the kids one yeah it's alright really. It's alright. They just tell you more. They just tell you more about even more information. Tell you that's going to be ok but you must take your medication.

And in terms of, do you see the same team every time you go to the hospital?

Yeah the same team.

How important is that?

Well it's like, if you don't see the same team it's like they will give you all different information. One might be saying, 'Oh you take this, take that but I will not allow you to take four of these'. And so you get muddled up so that it is very important to see the same person because they can keep record of how you've been. And how many, have you been in hospital this year and if you're taking your medication, if you've lost weight, yeah or if you've shrunk or you've gone taller and yeah.

How do you think they communicate with you? Do they, are they friendly? Do they use a language that you understand or do they use big words that you?

No they use a lot of language I can understand. They communicate, their communication is, is very friendly like. They will tell you the facts and they won't be like, oh they won't be wishy washy. They will just tell you what's happening. Tell you what you should do and. They're not, they don't really hide anything or do anything that shouldn't be done or.

I think it's a good service. It's a really good service. Just have more understanding on like what it is really. It's really good because they are very friendly, not like they're not friendly. And they really do want to help you even though at the time it feels like they want to kill you and they just don't want, they don't like you, they just want to stab you with needles but [ha] they do want to help you [laugh]. Yeah so yeah I think it's good. I just think they should, yeah it's good. 
 
 

Her children's and adult medical teams are very good, but she established a strong relationship...

Her children's and adult medical teams are very good, but she established a strong relationship...

Age at interview: 21
Sex: Female
Age at diagnosis: 4
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I mean the children's clinic, it's, when you move up to the adult clinic, you kind of gain a lot more control, when you're at the children's clinic, you're just given an appointment that you know you're expected to turn up to, and they do, they give you a lot more pressure and a lot more commitment to you, so that you go, so that you go and get regular check-ups and they give sort of a really big emphasis on, on like looking after you and working as a team, they are a brilliant brilliant team, then when you go to the adult clinic, they sort of let go of all that pressure, and they just say, 'Look you can come if you want, you don't have to, it's up to you, if you want to come and get checked out every four to six months you can, or even more so if that's what you need to do," but, it's a lot more laid back, it's not as controlled, its just sort of, its just a lot easier. So.

Did you or do you trust your children's consultant to tell him about your concerns and how you were feeling and things like that?

Yeah, probably 90% of stuff, sometimes you know, like they'll be things that you, you know, he would ask at every single time you went like, you know, are you exercising, yeah, you've lost weight, why have you lost weight. Are you eating properly, you need to look after yourself, de da, de da, de da and it was sort of like yeah ahah, and you were just going in there just to sort of nod your head and, but like, on a more serious note he was a really good consultant you know, he was, he gave you, [deleted by respondent] his e-mail address, you had everything you needed in case you know, you needed him, so you know if you, if you had a concern you could phone his receptionist and he'll phoned you up ten minutes later and say just pop in to the clinic and I'll see you.

He was brilliant like that, he gave a lot of commitment and that was probably quite hard to lose because you know, you sort of lose that, it's more of a friendship as well, so, you know, I've stayed in contact with him, quite a lot because obviously he's in contact with my Dad with the fundraising, so, you know, he'll e-mail us, and see if everything's alright, and, see how my family are and because you do, you go in and you tell them, you tell them you know what's going on, and how you're doing at school and things that are happening with the family, and they do ask you and they make notes about things like concerns or troubles, and then check up on them, like maybe a couple of months down the line, they'll say, 'Are you still worried about this? Is it still a problem?' And they were brilliant like that, so.

And what about the nurse?

The nurses were the same. They sort of gave you support, like it would be things like school trips or things like that maybe I couldn't afford to go to, they would arrange for us to be assessed for funding for things, and I think there was only one time that I did that, it was for like a school trip that was quite pricey and my mum wouldn't have been able to afford it, and the nurses just says, 'Oh there's a fund that you can go to for things like this, and they'll supply you with the funds that you, you've got to go on these trips' and so I did that once, and they helped us through that. And as well they are really helpful, they give you, you know their offices numbers and you can tell them things, and in confidence, and you know you sort of build up a relationship with them as well. So it was it was a really, live overall the team worked closely, but still you could go and talk to each one for something different if you wanted to.

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. 

 

Her biggest criticism is that consultants are ill prepared to advice young people about illegal...

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Her biggest criticism is that consultants are ill prepared to advice young people about illegal...

Age at interview: 19
Sex: Female
Age at diagnosis: 16
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Yes, apart from smoking cannabis. I carried on smoking weed and I smoked weed for quite a long time. I gave up a few months ago. But that, I mean the doctors never said anything about that to me. And it's something that they didn't talk about at all like was the fact that, you know, other than, 'You can't take drugs' and, 'It's really bad for your epilepsy to take drugs'. That was sort of it.

Did you want to ask the doctors?

Yes.

But you didn't.

No, because of the reaction I got when I, when she asked me if I'd, you know, when she said, you know, 'Had you taken anything before you had that fit?' And I said, 'Yes, I'd, I'd taken Ecstasy the night before and had smoked weed'. And the, the way she looked at me. It was just like, I felt like I was at school again, like I was a little kid and I was being like told off sort of thing. And so I was like, 'Oh my God. Right, definitely not going to, definitely not going to disclose anything else about that'. Because it just, I felt like I was a little kid again and I was being told off for being naughty, you know, and just re-, being judged like and being looked at as though I was a complete, you know, fuck-up rather than, you know, actually most teenagers nowadays do take drugs at some point in their life. And it's something that I think, like particularly if you're dealing with teenagers who are being, diagnosed with illnesses, like that you have to be honest about and you have to talk to them about it. And you have to sort of say, 'This is what you can do. This is what you can't do. You know, if you do do this, this is the safe way of taking drugs if you're going to do it'. I mean with epilepsy, Ecstasy and cocaine and stuff are just a big no-no really. I think they do sort of cause you to have seizures if you take them. I don't know, because I've stopped taking them.

But it would have been good and very useful to you to know, to have had this open discussion with your doctor?

Definitely. But I mean, that for me, that's my biggest criticism of the doctors, is that I don't think they're very open to talk about those sorts of things. Or they weren't, they weren't with me. 

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.

 

At every stage of her illness she has felt reassured and well advised by her medical teams. Some...

At every stage of her illness she has felt reassured and well advised by her medical teams. Some...

Age at interview: 18
Sex: Female
Age at diagnosis: 13
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They'd always be very good; they'd always spoke to me and my Mum rather than just my Mum. Which I found helped a lot, because maybe they'd explain things very clearly and very well. And if there wasn't anything I didn't understand that the consultants had said, if I asked one of the nurses they were quite happy to go into more detail about it and explain it better for me. Which was very helpful. We did find that at points, I mean after my transplant, my Mum felt a bit pushed out because I kept getting little bouts of mild rejection at certain points, and they didn't seem to be able to get on top of it, and me and Mum felt that there was something that they weren't telling us, which was quite difficult, and I think me and my Mum had quite a few words with the consultants and they had little meetings and said how we felt, and because they weren't getting on top of it and we said well what aren't you doing right, you said you know you can stop rejection, I'm on all these medications and yet nothings working. So then they did start telling us more about what they were trying, what they were thinking about. Which was, that was better because you know, they'd realised that we wanted to know more information about what they were going to do. But then towards the end they were really good, they did start explaining things a lot better to us, so.

Okay, this was the team in London?

Yes.

And what about the team in the hospital near your house?

They were always really good before my transplant, they told us everything. Since I've had my transplant I've only had one appointment back there so far, so I don't really know how it is going to go.

You went back to the same consultant you've had before?

Yeah. Well I had, there were three consultants when I was on dialysis, but when, after you've had a transplant you can pick to go to any one of those clinics, and I chose a certain consultant because he was, I found that I got on with him a lot better than I did the others. So I chose to go to him.

What made him different or better?

I think it was just the way he explained things and he tended to speak to me, like I was an adult and he was, he wasn't all, I mean if you were in like a clinic meeting, it would be me, him, or my Mum and if my Mum couldn't get someone to look after my brother he would have to be there, and the consultant wouldn't mind that, he would talk to me and my Mum and then he might talk to my little brother and you know we felt like we were all welcome with him. But then with certain consultants we've felt like, I don't know just as if they thought we were a bit rude, having my brother there with us, which made us feel quite uncomfortable. Yet if my Mum had a choice she wouldn't have brought him into the appointment.

 

Talks about what it is like to see several specialist teams in different cities. Feels most...

Talks about what it is like to see several specialist teams in different cities. Feels most...

Age at interview: 16
Sex: Female
Age at diagnosis: 7
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You were referred to your hospital here, to your local hospital?

Sarah' Yeah.

And for how long did they  look after you?

Sarah' Well they were keeping an eye on me since I was referred at seven and. But they told me that there was nothing that they could do. Because it wasn't my local doctor that put me on the tablets and it wasn't the local hospitals that give me the operation. It was up in London.

At the beginning you had to go London?

Sarah' No.

Mother' A few years before.

Sarah' But my local hospital told me that there was nothing that they could do. They said that. I spoke to the plastic surgeon and he said that he can't do anything. And so then they, we had, in the local hospital they had  like a, a conference thing and they came round and doctors from different hospitals all in the countries and from the. 

They explain things and tell me the details. And they ask me if I have any questions and I ask them if I do. But they make sure that before I go out of there that I know exactly what was going to happen or how, what is, if it's increasing. If they're increasing the tablets why they're increasing it or like they will tell me what they'll do.

And how do, what about the language they use? Do you think they use easy to understand language?

Sarah' No sometimes they will talk to the other consultants with all big words about medical stuff but, but then they will sort of translate it back to us and tell us what really they said.

And before the operation, just before the operation do you remember how you felt?

Sarah' It was mixed feelings 'cause I was feeling scared because of an operation but then I was feeling happy that it was, something was going to be done and that I'd. And then I was nervous 'cause I didn't know what the outcome was going to be like.

Can you tell me more about what the doctor or the plastic surgeon said to you?

Sarah' That he was going to take some fat from some part of my body and put it into my nose, inject it into my nose to build it out. And he said that he was going to inject it into my forehead and my cheek and my nose to make it more evenly. But he did say that it, it would have reduced, that the fat would have gone, in like, in a certain amount of time. Like it has gone down a lot now. When I first came out of the operation it was like a really round, big thing [laugh]. But now it's gone down normally. And I don't know what else like.

Your medical team now is your consultant in London?

Sarah' There's the consultant in dermatology, there's the consultant in rheumatology, and there's the plastic surgeon, maxifacial, ear, nose and throat, and who else?

And thermography person [laugh].

How did you feel about your medical team, all these?

Sarah' Sometimes I'I am thankful because, for London, because when they told me over here there's nothing they could do I was a bit upset. But then

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').

 

Says that she usually saw a different consultant every time she went to the diabetes clinic. She...

Says that she usually saw a different consultant every time she went to the diabetes clinic. She...

Age at interview: 17
Sex: Female
Age at diagnosis: 6
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What about the doctors? What about your consultant?

We do actually change our consultants a lot and that is a big problem because you go and see, you go and expect to see the same doctor and you don't see the same doctor, it's, like they do see a, you do see a different person and they have, they don't know anything about you and they're like, they, once I, she did go to the hospital and I sat outside the room for about forty-five minutes while the doctor read my file, and I went in and she was like, 'Do you know what happens if you do this?'. And, 'D'you know what happens if you get lumps?' And I think she was, she was a new doctor and she, kind of overlooked the fact that we have been told a lot of things before, and she, I think she was, she was trying but I think it was a complete [laughs] waste of time when I went to that appointment because, we talked more about the effects of diabetes than what had happened in my diabetes, and then the next time I went I had another doctor again so [laughs] it wasn't the best.

And you talked again about diabetes in general or '?

I think we talked more about it in general, I used to have the very good woman as my doctor, I think she was my doctor [laughs], and it was [name] and she was absolutely brilliant she, I saw her every time and, she remembered things from time to time, and she had remembered, like if I'd said that I had planned to do this, not only had she written down she'd like said to me, 'Have you kept up with this? And have you kept up with things that I've said that I'd keep up with?' But now it's, I think we've had it quite hard trying to find a consultant to stay.

It's important for diabetics to have a big say I think in their treatment because the treatment is a lot around them but I've, I know I've been quite lazy with my insulin and taking it and I think in many ways my doctors should've picked up [laughs] on that a little bit earlier, but for them to have seen it I think they should've asked me a few more questions like, 'when I have my insulin am I, how much shall I thinks getting in?' or 'if I'm sure that I'm, my insulins getting in all the time?' and just things like that would've been more helpful in a way, and I think probably it would've been better if I could've had someone just checking on me a little bit more regular than three months because I was finding that a lot of my appointments were close to six months appointments rather than three months so.

 

It would have been helpful to see the same consultant when she went to the hospital. She should...

It would have been helpful to see the same consultant when she went to the hospital. She should...

Age at interview: 22
Sex: Female
Age at diagnosis: 16
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What support you needed?

I just needed someone to tell me that it wasn't in my head and it was actually real. Because I was made to feel a bit of a fraud and a liar. Because I was saying that, 'I've got all this pain'. And they said, 'Well, no. You haven't got that much pain'. I said, 'No. I really have'. And one doctor told me if I did some exercise my spine would straighten up fine. So that was, it's not so much an issue now, healthcare, because I'm really lucky, I've got a really good set of doctors. I've got a good GP and I'm at a good GP practice overall. So they're very helpful when you ring them up over the telephone. And I've got like, I've got an understanding now with the hospital as well. And, but I think also the problems with the healthcare, it was partly my fault and it was partly the doctors' fault as well. It was partly my fault for them saying, it was, let me start again, it was my fault for thinking that they could just make everything better, they could just perhaps do an operation on me and it would all be fine. And I also think it was partly the doctors' responsibility that I would, they never actually sat down and said to me, 'You know, this is something that you've got to learn to live with'. Rather than just X-raying me and saying, 'Right, we'll see you in the next six months, we'll see you in the next six months'. So everything was always the next six months. And I was expecting the next six months for them to tell me, 'Oh, we're going to do this and make you better'. So that was, healthcare was a big issue for me.

So that was your expectation. And in, in which ways were they failing?

I never got to see the same doctor twice. I always saw a different doctor. And it was like little things, it was, I used to go in there and the seating is absolutely appalling in hospital. So bearing in mind I'm there for a back pain clinic, and then they make you wait for three hours on the most uncomfortable seat ever. And then I'm not exactly in a good mood when I get in there. It's just little things like that. And it's like when I ring up for an appointment. Like, because I had an appointment a few weeks ago, and two weeks before I tried to cancel it and rebook it. And they said, 'No, we're not booking any more appointments'. I couldn't get another appointment for a year. So it's quite difficult when you're planning holidays and, and things like that. So I think if I'd had a bit more information, like when they make an appointment to say to me, you know, 'The clinics are really booked up. You're not going to be able to change this appointment. So please plan your life and your holidays around this appointment'. I mean it doesn't take long to, to say that. It takes not even a minute. I think that really would have helped as well.

It's like, take the instance, last time I went to clinic a few weeks ago, they'd lost my previous set of X-rays. And because I hadn't seen the same doctor before, they couldn't exactly remember what the X-rays were like before. And it's things like, because when they measure the curve it's quite subjective, because it's down to the individual. And if you've got like five different people each time measuring the curve, all the measurements are going to be different. So one might say it's got worse, the other one might say it gets better, and then it doesn't continue. It makes me laugh sometimes, because I have to laugh about it.

Have you told them about this? 

Yes, yes. But I've got, finally now I'm having my surgery I'm being referred to [hospital] Hospital. And it's up in [city]. It's quite far from where I live. But I've got a feeling things are going to be a lot better now.

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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