I’ve been talking to a few people about mental health care on the NHS, and how difficult it can be to get the right treatment. After I told the story of my experiences, a couple suggested I write it somewhere permanent because it could be useful as a guide – so here it is!
The mental health system (at least where I am, and for a lot of people I’ve talked to) is based on a sort of ‘ladder’ of different levels of treatment, where you have to go through one level before you can move to the next. This is probably a really useful system for people with acute or minor needs, like a period of stress or mild depression. It makes sense for those people to see a counsellor for a few sessions of basic CBT at first, because there’s a good chance that will be all the treatment they need.
But it’s not a good system for people with complex and long-term mental health needs. If you need more intensive or advanced treatment, you still have to go through all the lower levels first. If the duration of treatment isn’t enough, you just have to keep on cycling back through them again. That means wasting time repeatedly seeing new people when you know it won’t be for long enough to help you, having to explain yourself over and over again, and lots of waiting to move from one level to the next. If at any point in that process you are deemed to not be ‘committed’ to the treatment, you’re liable to be discharged and will have to start from the bottom again if you still need help.
Trouble is, if you are disillusioned with the system and have been trying to get help for a long time, you’re even more likely to be perceived as not committed to treatment. I know that I looked like I wasn’t committing, for a bunch of reasons.
- Every new person I saw, I knew I was limited to small number of sessions. And I knew from experience that it wouldn’t be enough to make any progress (maybe not even enough to fully explain my needs!). It was hard to put in the effort of getting to know a new therapist or to start doing really difficult work when I knew I would soon be dropped and sent somewhere else.
- I’d experienced basic CBT before, and knew from experience that it wasn’t helpful for me. It was hard to bother doing tasks and techniques which I’d tried many times without success, and which were clearly designed for people with minor or simple needs.
- The very nature of my complex needs was in itself a factor. I’m autistic, and that means I process everything differently, which is part of what makes my mental health so complicated to deal with. But it also means that I express emotions very differently (and generally less), and have trouble describing or understanding them at all. So I would seem to not be feeling things I said I was, or contradicting myself in what I said, or just not doing the tasks I was given.
All of those things made me look, at first glance, like someone not at all committed to treatment or interested in getting better, not bothering to do the work needed, and exaggerating or misrepresenting my problems.
In the past, I’d always assumed I should defer to whoever I was seeing at the time, and let them choose what they thought was most relevant or important. I figured, they’re the professionals, they can work out what I need and how to achieve it. But in all my experiences, that was a generally unsuccessful approach. People misinterpreted my communication and drew inaccurate conclusions, or they started out with simplified assumptions that didn’t apply. The general pattern seemed to be that people didn’t realise just how much I was struggling, and so they tried to treat a more minor version of the problems I had.
I’ve spent about ten years so far being juggled around various mental health services, being misunderstood and not getting the right help. Luckily, having years of bad experiences gave me one superpower: knowledge. I know about myself, my mental health, the mental health system in general, the many and varied types of treatment I’ve attempted, and the responses of the countless different professionals I’ve met. I know much more about those things than a typical patient with simple or minor needs would – and certainly more than someone who was uninterested in getting better.
In the end the method that actually worked to get the treatment I needed was to stop deferring to the ‘experts’, and start wielding my knowledge to get them to listen to me. The next time I went back onto the treatment ladder, I was upfront and stubborn about several things from the start:
- I needed to see someone particularly specialised.
- I needed to see someone for a long time.
- I wanted to make progress, but the work needed is very difficult for me.
In fact I wrote a document which I gave to the first few people I saw, because I don’t communicate well in real-time. I wrote:
- Details about my history and how everything had been ineffective so far.
- Outright demands about the help I needed (including an explicit statement that a short course of basic CBT would not be remotely sufficient and wasn’t what I needed).
- Honest information about what made me a complex case, like my autism diagnosis and the fact I struggle with some of the skills needed for traditional treatment.
Some of the first people I saw found it unsettling that I was so upfront about these things. One particular person, a low-intensity CBT therapist, tried to discharge me. We did not get along. She seemed to refuse to believe that I knew about myself, and insisted on giving me low-level CBT tasks that simply don’t work for me. When I explained that I struggled with those tasks because I find it difficult to distinguish between thoughts and feelings, she told me I just needed to try harder and ‘stop overthinking’.
This is where the stubbornness came in especially handy, as well as the fact I’m lucky to have a strong support system. With the help of my parents, I complained to the service and met with someone more senior. She took some convincing, but eventually she acknowledged that I was committed to treatment and that I did need more intensive therapy than the person I’d been seeing.
Finally she agreed to refer me to secondary care, which is the step beyond the usual treatment ladder. She made vaguely threatening implications that they might refuse the referral if they didn’t deem me needy enough, and that I wouldn’t be able to go back to primary care if that happened. But I already knew that primary care wasn’t remotely meeting my needs, so I had nothing to lose.
Secondary care accepted my referral and took me on. I am now seeing a specialised therapist with – most importantly – no strict limit on the number of sessions. It was tough getting here, but the treatment I’m receiving now is way out of the league of anything I’ve had before.
This method is not necessary for everyone. For lots of people, short blocks of CBT are enough to handle their mental health needs – and that’s great! If that’s the case, you can commit fully and do the work you’re recommended, and make progress to feel better. My experience has absolutely no bearing on situations like that, which presumably make up the majority of mental health service users.
My experience – and therefore my advice – is a lot more niche. It’s for people who have more complex and long-term needs which are not currently being met. In that kind of situation, it can be very difficult to get into the right part of the system – because the system is designed to keep people in the lowest level possible. When that is the case, being explicit about what you need (and what you don’t) is a way to demonstrate commitment without having to go through endless levels of treatment which do nothing for you, or having to misrepresent and simplify your experience to fit it into those levels.
I’m not saying this method is foolproof. It’s certainly risky, because if you can’t express your certainty and experience clearly enough then it will just come across as being completely resistant to treatment. Some practitioners (like the troublesome one I saw) will find it confrontational and become defensive – an understandable reaction when you are repeatedly telling people that they can’t help you. But if you can be honest and persistent (or you have people who can help you do that), it can enable you to take back control over your care.
I also don’t want this to come across as a negative view of the mental health system. The NHS is an incredible thing, I can’t imagine life without it. The NHS mental health system specifically is also an incredible thing that helps many people. I absolutely don’t want to discourage anyone from seeking mental health help from the NHS – quite the opposite! I just want to help everyone get the best care they can. And that includes anyone who might be like me, and having trouble finding their way to the right treatment. Hopefully reading my experience may be a small help to even a few people.