Young people’s experiences of dealing with health professionals in primary, secondary and tertiary care were varied, see ‘Dealing with health professionals’. Over months or years they had learnt what worked best for them and how they felt health professionals could best support them. Many were passionate about young people’s voices been heard and listened to in mental health care, and about communicating these points across to all those working with young people.
“Do your job”
While being “young people orientated” was a very important characteristic for a health professional, at the same it was important for them not to come across as patronising. Young people wanted their doctors to do their jobs, not pretend they could personally understand what it was like to live with depression. As one woman put this;
“‘Cos they don’t know how people feel, so they shouldn’t say it.”
Just that it’s easy to tell someone that it’ll be alright and but they’ll be able to, they’ll never be able to know what’s really going on. Like someone could sit there and blurt out well everything, but they will not be able to understand what someone’s been through. It’s alright to sit there and say, “You’ll be alright,” and “Keep your chin up,” but it’s hard to go through that, but for someone to sit there and think I haven’t been through it, but yeah keep your chin up if you know what I mean.
Do you find it like difficult to believe them?
Yeah. ‘Cos it’s like they’ve got a job like, they can do what they’re doing and they’ve got a happy life, they can go home and chill out and I just don’t believe them because, it’s, I’ve still gotta go home thinking the same thing and being depressed.
Young people wanted their health care providers to allow them time and to be patient with them, in the same way they wanted their parents or carers to respond. While being professional, young people appreciated a human side and “going the extra mile” and said they could sense who took a genuine interest in their wellbeing. Many also described how hard it was to talk about the sorts of difficult experiences they’d been through and hoped for sensitivity from doctors. One woman said;
“I know you’ve got this text book of depression and you use these things you have to treat it, but please half these people hate it, they hate the stigma of being told to sign something that has the words “mental health” in it. They hate the fact that they feel like this.”
And just to have a bit of patience. And there was, I’ve had friends that have sort of, that have looked like they’ve not wanted help because they’re still continuing and the, they’re not, they don’t look like they’re trying to stop and sometimes it takes a bit of patience. When I was first sort of diagnosed and I wasn’t listening to any of it, I thought, “Well it’s all rubbish what they’re saying anyway and I’m gonna continue what I’m doing and it took a while to realise that actually what I’m doing it probably wasn’t the best idea. Sort of it took a while to be able to accept that, because I thought, “Well I can do it on my own, why do I need these people anyway?”
Besides offering conventional treatments of medication and / or therapy, people hoped for their health providers to adopt a proactive and “encouraging” approach to recovery. Many wanted to get as much information as possible, to be told of all the different options available for them. Some emphasised the importance of finding coping strategies together. For example, health professionals telling young people how taking up a sport, a new hobby or learning a new skill could help boost their confidence, alongside treatment. Many young people had been told by their doctor how common depression was and that they weren’t alone. However, some felt that demonstrating this in more concrete ways, like recommending books or highlighting “successful case studies” would’ve been helpful.
And they know you only have a designated GP time, but most people are just kind of feeling really lonely and lost, and think about other ways to encourage them.
Don’t just give them this, but you know, if someone could say search for a few well known authors on depression, I can’t think of any off the top off my head, on Amazon, that would have helped that me. If someone had said, regular exercise, join these groups, join your local, don’t necessarily join your gym ‘cos I think, I don’t think that would be a good idea, well the exercise would help but like a team thing. Go and learn something that makes you feel good about yourself. If someone had told me that I probably would’ve thought it was weird, but if they’d given me a reason, I think it would have done an amazing thing.
Age at interview:
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I think would be to if possible find someone you know, that they would kind of, find a suitable case study to relate to, so if you can, like if you can, if I could’ve been associated with someone that had gone through very similar process of events, then and saw the guy or the girl that’d come out of it, you know, and was doing, having a great life, so the same, similar symptoms and the desired outcome you want you know, then great.
‘Cos it, what made things so much worse was knowing that, not, not knowing about the subject you know, the doctor saying, “Oh yeah, this happens all the time.” But you’ve got no proof of that at all. And it’s just him, you could, you know I know doctors don’t lie, but at the same time you’re thinking well, is there really someone else that’s gone through this?
“Treat us as people, not as diagnosis”
Above all, young people with depression or low mood are young people. Not patients, diagnoses or conditions. Several young people felt that some doctors had been more focused on their diagnosis or treatments, than looking at them as individuals and their lives as a whole. They felt that they benefitted more from their treatment and care when the decisions were tailored to their overall life situation and they were involved. Being treated with respect and above all, as people, rather than “a walking illness” was essential. Being treated as a young adult rather than a child could also boost young people’s sense of self and confidence. Young people didn’t want to be treated any differently, even if they had a diagnosis of a mental health problem;
“You feel like you are actually insane. So don’t react to people like they are, just because they have a mental health condition it doesn’t make them any less intelligent, or any less capable of dealing with the minutest detail of their condition.”
Some people also pointed out that the better their doctor knew them, the better they could treat them. They resented doctors taking a blanket approach and explaining their behaviour too quickly through their diagnosis. They felt sometimes doctors made quick assumptions about how people with depression or low mood behave rather than find out from young people about their specific situation.
Just give us a break you know, dude. We’re good people at heart but things are difficult. Don’t judge us and if people are obnoxious and rude, this is to the professionals okay? If you’re rude and obnoxious don’t work with children, don’t work with children with health problems ‘cos you just don’t need it. They don’t need it, we don’t need it. Get out.
Just consider what you say and what you do, because saying the wrong thing, or reacting in the wrong way, considering you are a professional, and if people have decided to take a chance on that, and are there even if it’s voluntarily, especially if it’s voluntarily, it’s gonna be very hard for them to open up if they’re taking the risk, deciding to open up, don’t, just don’t criticise her because it’s very difficult to be open about what you’ve experienced, how you’re feeling. And some things that you say or that you feel just make you feel crazy. You feel like you are actually insane. So don’t react to people like they are, just because they have a mental health condition it doesn’t make them any less intelligent, or any less capable of dealing with the minutest detail of their condition.
See 'Brief Outline'
Frankie' Advice, Advice to professionals would just be, “Do your bloody job.”
Frankie' Do your job. Don’t pass us off.
Sian' Don’t just do the job though, because…
Mandy' Remember a person,
Sian' Yeah, remember they’re a person, don’t just do your job, go that extra mile for them, do that, twist things just slightly just to help,
Frankie' What they tend to do is once you’ve got a diagnosis they treat you as a diagnosis not as an individual. So they don’t find out why you do certain things, or why you, they don’t tend to look at your background, they just tend to say, “Well you’ve got this, this is how we’re going to deal with it.”
See 'Brief Outline'
Mandy' Another patient number. We, you know there is a person behind that illness. You can’t just treat the illness, or you’re not gonna see the person, you’re not going to help the person back, especially when it comes to depression, because the illness takes over that person, and takes over that person’s personality. And you’re not going to discover the best way to treat them unless you actually talk to them, and take the time to try and see what’s going on there behind there and who’s the one that’s struggling to survive inside type thing. So you know…
Sian' Just be there really,
Frankie' Treat us like people, not patients.
Mandy' Treat us like you’d like to be treated if you were in the same situation. Because you know we’re not an illness and we’re not a patient number.
Young people didn’t want to be patronised or “mollycoddled”. They wanted honest and straightforward information and open communication. Trust and confidentiality were essential elements to establish in the care relationship. Some people worried about telling their doctor or therapist certain things, in case their parents would find out. A couple had been to the clinic with their parents and had felt uncomfortable about being honest about self harm or any suicidal thoughts, for example. Also, they wanted their doctor to talk directly to them, rather than to their parents. Again, young people wanted their doctors to be open and inclusive.
Don’t say one thing to them and another thing to their parents, because that’s just pathetic, okay? We can deal with it, just don’t lie to us. We’re pretty cool like that. We’re people as well as conditions.