“I’m not going to give you another prescription”
“What... but I need it.. (panics)”
“Don’t worry, I was just testing to see if you really did still need them..and I think you do”
GP in Fenham, Newcastle
“Just take them when you feel you need to” - to me aged 17.
GP in Cumbria
“So, do you want to kill yourself then?” - on a routine prescription pick up.
GP in Bow, London
“It’s important you stop taking this medication as soon as possible, we have no idea what impact it can have, especially if you start taking it when you are under 18”
GP in Fenham, Newcastle
“It’s fine for you to take it as long as you need to, even for ever”
GP in Tower Hamlets, London
“They’re not addictive”
GP in Cambridge
“You will get withdrawal symptoms”
GP in Byker, Newcastle
The above is a selection of the contradicting information and advice, as well as frankly bizarre approaches and attitudes I have experienced in the twelve years I have been seeing GPs regularly, mainly around mental health.
At YouthNet, we spend a lot of time supporting young people to take the first steps to support. For mental health, their GP is usually the gatekeeper for services. We find a lot of young people really struggle to get the mental health support they need from their GP, facing a number of personal or practical barriers along the way. As well as support in articles, live chat and on our discussion boards, one of our latest projects involves crowdsourcing and discussing experiences of young people in order to create community content to help others overcome these barriers. This project has really highlighted the frustrating reality for many people of trying to get the support they need from local health services.
I can really sympathise with many of these issues on a personal level. I need regular medication but (like many young adults) I spent the years between 18 and 25 moving around - to university and back in the summer, to two new cities for jobs and even within those cities as short term rental contracts ran out. As a result I have found myself explaining myself and my history to many many different GPs - and I have experienced a huge range of approaches, attitudes and education towards depression, medication and treatment.
I’m not, by any means, saying that all GPs are bad at providing mental health support - I have had some wonderful ones and some of the difficulties I faced were potentially ones caused by my thoughtlessness. However I find the lack of consistency striking and I don’t think my thoughtlessness was anything more than GPs should be prepared for in young people.
Personal experiences of inconsistencies and 'bad' support
Before leaving home
I visited my GP when I was 15 about going on the pill. She gave it to me without asking any questions about my family history, nor explaining the potential impact of hormonal contraceptives or other options available. On the pill I became extremely depressed and, like many young girls who start taking the pill without adequate explanation, I had no idea why. I became jealous, tearful and completely dependent on my teenage boyfriend, while also blaming him for how I was feeling. Unsurprisingly he backed off. Even after I stopped taking the pill, the weeks before my period continued to feel very similar and I didn’t have the understanding or resources to be able to identify it. I remember thinking ‘well, I feel fine now, but I was in tears all last week, so there must be something seriously wrong in my life’. As a result of feeling so bad so regularly, I didn’t believe my own emotions when I felt ok. I also remember the relief when I identified it as PMT and found a book on its effects on relationships which completely mirrored my own experiences.
I finally went back to my GP to try and get some help and she gave me Citalopram, 10 mg, to take ‘when I feel I need it’. As a result, for a long time, I understood Citalopram as something to take when I’m feeling low that would perk me up - and, more importantly, I understood it as only a crutch to prop up my mood. It was only years later that it was described to me as something that can be used to actually make changes within my brain, to ‘cure’ over a short period whilst I am also getting additional support - for example CBT.
In addition, the casual way I was instructed to take it meant that I failed to understand the nature and impact of what I was taking and how it could affect me long term.
This attitude of using antidepressants as a crutch and nothing more was one that my initial doctor at university helped to sustain. I returned to him regularly, reporting worsening depressive feelings, not only pre menstrually but all the time. His reaction was to consistently up my dose, without offering me anything extra, until I was on 30mg a day and still struggling. I am happy to admit that my university life was not one that was particularly helpful for someone with a diagnosis of depression but, looking back, I was never actually diagnosed in that way. I was just given more and more of the medicine I was initially given for PMT. Personally, I think some kind of diagnosis would have been helpful for me - it would have given me perspective and something to work with. I don’t feel that I should have been ongoingly prescribed anti depressants without some sort of discussion, with me, about why and for how long.
Eventually I reached crisis point and decided, late one night and very low, that in order to sort this out once and for all I needed to stop taking my medicines, get back to ‘the real me’ and work from there. Looking back, I can’t believe I didn’t realise the impact this would have. I think it was symptomatic both of my muddled thinking but also of the casual way they had always been prescribed. Of course, stopping taking them like this caused horrible physical and mental withdrawal symptoms and I was soon back on 40mg a day, taking a break from university and finally seeing a different doctor - one who was able to give me a more official diagnosis and who was hugely comforting and understanding compared to any I had seen before. Unfortunately, the appointment for CBT I was referred to while I was back home didn't come through until I had to return to university, and mental health services in my university town had been cut to the extent that the waiting list there was longer still.
After finishing my degree (something I still consider one of my greatest achievements given the state I was in) I moved to a new city. The next few years were ones of both explaining and of trying to understand - as well as trying to do what I saw as regaining control by cutting down my pills.
I moved from rental house to rental house, staying casually in friends' spare rooms in between. To get my prescriptions, I ended up having to see a number of different GPs and to explain my situation over and over again. It was here that I came across hugely differing views on the nature of my medication. One doctor told me I really needed to get off them as soon as possible, especially given I’d been on them since before I was 18, another telling me it was fine to be on them as long as I needed.
In addition to all the explaining, I really wanted to try and understand what was going on when I tried unsuccessfully to cut down on my dose. Some doctors had told me that Citalopram is not addictive - and I thought this meant that I should not get withdrawal symptoms - something which directly contradicted my experience. None of the doctors I discussed this with explained to me that my understanding of ‘addictive’ was not the same as the medical definition. It was only when I chatted to a psychiatrist in London that I understood that an addictive substance is something you need more and more of to get the same effect. Citalopram is therefore not addictive, but stopping taking it can cause withdrawal symptoms. I think it’s a real shame that not one of four or five GPs I asked about this during this period recognised that my understanding of addiction was confused. In this period, I managed to cut down my dose to 30mg a day and then to 20mg, but after a difficult patch following a termination I returned to 30mg again. It felt like I would never be able to stop taking them.
It was also in this period that I came up hard against the problem of receptionists. While I have come across welcoming and helpful receptionists, in my experience and in the experience of our users, they are by no means the norm. I wrote an example piece for TheSite.org's personal stories section about a particularly difficult time I had with receptionists who clearly just wanted me away from the desk or off the phone. For someone shy, nervous and unfamiliar or uncertain with the surgery environment, unfriendly and unhelpful receptionists can be at best off-putting and at worst an actual barrier to accessing support. I understand that those at front of house in surgery are often rushed off their feet, with many conflicting demands on their time. However I think that there should be a recognition that the way someone is treated in reception can affect whether and how they access support - and those who are working there should have appropriate training and sufficient time to treat people looking for help properly.
Mind the gap
Now I have my meds on repeat prescription, so I only see my GP every six months or so. In fact, even within the surgery I have been with for the last 3 years, I rarely see the same doctor twice. I have discussed cutting down with more than one of them and feel I have reached the limit of the support they can provide for me. Luckily, I have enough knowledge, understanding and support from elsewhere to manage my tendency for depressive periods without them. I just wish that I wasn’t in a situation where I have been taking medication for so long - all my adult life. I don’t even know if I really need it, or at least if I needed it in the beginning. All I know is that I feel dependent on it, and that the withdrawal I experience if I cut down too quickly brings back the dark fog and makes my thoughts bounce uncontrollably back from it in endless negative spirals.
My experience, both in terms of my mental health and in terms of the help I received was nowhere near as bad as many who struggle with more challenging conditions with much less support. However, I think it’s worth identifying where the gaps were, and are, in the support on offer to young people with depression or other mental health difficulties. These are some initial ideas, based on my experiences personally and through work. Many people have had varied and relevant experiences in this area, which it would be great if they could share.
Gaps in ongoing support
I think if I had had one GP throughout, or even two, my experience would have been very different. My GP would have known me and my medical history better and would have known what we had talked about and what we hadn’t. They would have had a better sense of what I knew and what I didn’t know - and I would have been given consistent information. In addition, I would have been able to access counselling without having to leave a place to go home, or back to university, or to a new job as soon as I reached the top of the waiting list. New GPs and gaps in continuous support are inevitable, but I think young people, many of whom move about much more in their late teens and early twenties, are more vulnerable to the problems caused by these gaps.
Gaps in understanding
I now feel I have the knowledge, confidence and understanding to navigate the system, to ask for what I want and need, and to say if I don’t feel I am getting it. However, looking back, it feels as though I was always expected to ask the right questions, to make the right decisions and to know the right things. For someone who didn’t know what they didn’t know or what was the right thing to ask, for someone who was confused about what was going on and what was causing it, who trusted their GP to do the best thing and who didn’t have much idea about how to help themselves, the system didn’t really work so well. This, I am pleased to say, is one of the areas where TheSite.org can help. We are often approached by people who are in the position I was before I went to the doctor to get the pill, or to talk about my worsening pmt and depression. Through a combination of expert and peer support, both emotional and practical, we can better equip them to navigate the complexities of the services available, and to get from them what they need. I hope that if they are better equipped than I was, they might be better able to get better support, sooner.
Gaps in training
Finally, without getting into complex debate about NHS's limited funds, I feel I can only tentatively suggest that, given the widespread nature of depression and mental health problems, it might be worth spending more money on training. Training that ensures that everyone is given consistent, accurate and respectful information on mental health and training that ensures both GPs and receptionists are more aware of the specific needs of young people accessing their services.