It’s Mental Health Awareness Week so I thought I’d share some of my experiences in accessing mental health care. I have depression, partly because my situation is depressing in general, partly because I’m taking steroids which also cause depression/low mood and partly because I don’t make a lot of the hormones/chemicals I’m supposed to, so I can’t actually control some of my anxiety and depression with therapy alone and need medication.
I have to say, accessing mental health care can be just as frustrating and complex as getting appropriate care for a physical illness. And that says a lot, since I have many problems getting appropriate care for my physiological illnesses. However, I always have the ‘this is life threatening if left untreated’ card with my physical illness. It’s not quite so straight forward with mental illness.
Waiting lists are long.
It’s the same for most services in the NHS, but, unlike physical illness, mental illness changes. It presents differently- you get used to it and it manifests differently and messes literally with your head. If a physical illness changes while waiting for specialist input, you can go back to your GP and put something temporary in place. That doesn’t always exist for mental health problems. And while being in pain or feeling ill for a long time on a waiting list is terrible, dealing with a mental illness feels a whole lot more isolating and wears you down so much, it literally messes with your head. Which makes everything feel so much worse even if it’s not.
You don’t necessarily have appointments when you actually need them.
Part of my endocrine condition means I get myself into full meltdown mode and I can’t stop it. Biologically, I can’t control it and the resulting panic attack or outburst can actually kill me because of the nature of my adrenal insufficiency. I can, however, probably do something psychologically about it before it gets to meltdown stage, but none of my doctors have seen me at that stage to be able to help. And I always seem ‘fine’ at appointments or I don’t feel like talking about stuff then. So, like other people, I don’t get the help when I’m actually having extreme issues, because it’s impossible to coordinate it, even if I can get some input into every day problems.
Difficulties describing symptoms.
I’m pretty sure lots of people feel like this, but when I’m having a bad mental health day, I don’t really remember what goes on. Which makes it hard to explain what the problems are. If something hurts, you can point to it at the very least, but you can’t do that with emotions. So sometimes I say ‘I’m fine’ and I’m not lying, I’ve just forgotten that I wasn’t. The trouble is, some mental health professionals sometimes either assume you’re lying by covering something up when you’re not, or they assume you’re over exaggerating when you’re not. You have to find a practitioner who’s a good fit for you. Quite a lot of the time, the people who assess you in the community aren’t always medically trained and go by a criteria which clearly isn’t going to be easily applied to every person.
You’re a bit stuck either way.
If you are proactive in trying to manage your condition, you’re seen as ‘coping’ so get less support or told to go away and come back in X months. A couple of my friends have been told that ‘depressed people wouldn’t be able to do that’ when they’ve discussed their strategies. The other side of it is, if you do nothing and leave it to the professionals, you’re often told you’re not doing enough to help yourself. It’s a double edged sword.
You’re made to feel like you’re ‘different’.
I get a lot of appointment letters from 4 different hospitals, 3 different trusts and various other medical people. But the only ones which come with ‘PRIVATE AND CONFIDENTIAL’ all over the front are the mental health ones. So automatically I feel like having a mental health problem is something to be secretive about. Which is stupid I know, but shouldn’t all my appointments either be private and confidential or otherwise? I can’t explain it, and it possibly is me being oversensitive, but being in that part of the hospital(s) feels weird.
Other HCPs judge you.
They do. They see the medications you take or see ‘depression/anxiety’ listed and sometimes don’t take your physical illness as seriously, ‘blaming’ your problems on your mental illness. The amount of times I’ve had an asthma attack but been told it’s an anxiety attack (when it’s not) is ridiculous. Or I tend to cry when I have an adrenal crisis because my hormones are not functioning properly and it’s sometimes implied by people who don’t know the condition that I need to ‘get a grip’ of my anxiety, whereas actually it’s my physical illness causing it.
There’s a lot of admin.
Lots of mental health services operate under self referral systems, meaning you have to sort it out yourself. Which is the last thing you want to do when you’re feeling overwhelmed, and quite often the forms sit on my desk until someone makes me do it. Particularly if it means ringing people on the phone. Then you’ve also got to remember to be the liaison between your GP/hospital which can also be hard work.
Like everything on the NHS, treatment is free but there are limited resources. Some therapies come with a limited number of sessions. With a physical illness, you can say ‘this isn’t working, let’s try something else’. With a mental illness, you might spend all of those sessions getting comfortable with your therapist and only just start making headway when you’re told ‘you’ve had your sessions, you need to be re referred or moved to a different service’. Even if you end up with the same practitioner, that gap in waiting can be the difference between progress made and negative progress. And it’s another waiting list…
Lots of people dislike visiting their doctor for physical illness, but it’s so much tougher going for an appointment for a mental health problem. You feel like you’re a failure, that you should just ‘get over it’ and, to a degree, a level of shame. Taking the step to ask for help is hard enough, let alone with extra hoops to jump through. Mental health impacts on physical health and vice versa, but there doesn’t seem to be joined up thinking between the two when accessing healthcare at the moment.