It’s mental health awareness week 2016. Everyone following all the action? Ok, just in case, like me, it’s passed you by I’ll do my own bit of awareness raising. You will undoubtedly have heard on the news about mental health services being severely lacking. It’s hard to know what this means until it affects you so here’s my little (arduous) journey through trying to access MH support. Jargon explained at the end.
It’s Dec 2015 and I recognise the all too familiar symptoms. I see my GP. He refers me to IAPT and starts me on antidepressants.
I receive a letter from IAPT fairly soon afterish telling me that I can have a telephone assessment in January but I need to opt in to this. IAPT are difficult to get a hold of. I try several time to send them an email but it bounces back every time. Eventually I ring. It’s a date! The phone assessment could take up to an hour and may be upsetting so I have to book time off work for this.
During the assessment I get scored on depression and anxiety using a handy little quiz – the sort of thing you’d do in a magazine. I am never told my result but many months later I look up what the numbers mean and the scores I register, back in January, mean both severe depression and anxiety. Anyway IAPT say they’ll ring back a week later with a treatment plan. IAPT don’t ring me back so I ring them. Worth pointing out here that lots of us with mh problems find making calls or asking for help incredibly difficult. I have to build myself up to do it! IAPT tell me I can have counselling.
Counselling is where you get 6 (I think?) sessions with a counsellor who talks through your difficulties with you. It is considered the most basic, first line treatment. It is a treatment that the IAPT lady agreed probably wasn’t right for me and that my GP didn’t feel right for me either but there you go. I was very unhappy with this course of treatment however there’s a “system”, a “process” and these hoops must be jumped through. Fair enough. The bigger problem was that there was a 6 month waiting list for this likely ineffective treatment that I’d have to do. That was quite a knock. Everyone has gone to work ill. Maybe a tummy bug or a hangover? And you can get through a day, maybe even a couple but months of feeling that bad? Every day? Well, it’s intimidating. Truthfully I wasn’t sure how I’d get through another 6 months feeling like this so I looked for alternatives. I tried Mind – they offered counselling – also a 6 month waiting list. I contacted l some private psychologists for advice – they never replied. I found a private counsellor which was very expensive and a sticking plaster to help me get through the 6 month wait.
In February my GP increases my antidepressant dose. Antidepressants can be rather nasty medications. They can bring a load of side effects which have to be managed on top of the illness. They also take a long time to work so when starting an a/d you’ve got to give it 6-8 weeks before the Dr can decide if they are working or not. It is usual in this time for things to get worse. So, having dragged myself through 2 months on my a/d, the GP increases the dosage. This starts the cycle again. Happy pills they ain’t. All the while I still have work and family commitments. I’ve now been struggling on for 3 months (that’s a hell of a tummy bug! Imagine how that’d feel!) but I’m coping less and less. Ben does more at home. Work slides. It’s inevitable but, at least, time is passing. I’m seeing the private counsellor, taking the medication and doing everything I should.
Unfortunately, like any illness, time passing just allows the illness to develop and grow. It gets worse and worse but there is no help/support available. I regularly see my GP to monitor the a/d and we decide to change the a/d. Again, not a quick process. I wean off a/d 1 and then begin a/d 2. The whole side effects thing starts again but this time the GP increases the dose more quickly. He also gives me a beta blocker for anxiety which works a treat actually! I’d been shaking for months with the adrenaline and the beta blocker really helps. It’s a bit too late though to prevent a lad in my form deciding I’m an alcoholic. He couldn’t be further from the truth, desperate to improve things for myself I had cut out all alcohol. As there is nothing else the NHS can do I just have to wait, wait and wait some more to receive my ineffective treatment.
I have exhausted every option available to me. I have to stop the private counselling as it destabilises me further. This point really does feel like the end of the road: all options exhausted, struggling to cope, still not had the first line of treatment from IAPT.
When things get really bad my GP bumps me up to the CMHT. He writes the referral letter in front of me. The CMHT never get in touch. The letter gets lost somewhere. The GP asks the Crisis Team to contact me immediately- which they do.
The CT come to my house and assess me for an hour and a half. They tell me I’m experiencing severe and significant difficulties. They give me a leaflet with phone numbers of Mind and Samaritans in and say they will refer me to CMHT. Yes, that’s the same CMHT that my GP referred me to. I ask how long before they will get in touch. It’s a 4 week waiting list. I utterly despair. I am now on 3 waiting lists (IAPT, Mind, CMHT). I really try to keep going but I’m so exhausted now. If we stick with tummy bug analogy it’s been 5 months and rather than get better it’s gotten worse. Work is completely overwhelming. Leaving the house is difficult. Actually everything is difficult. A shower becomes an achievement. I watch my life crumble around me frustrated that apparently I have done absolutely everything (and more) that I can to help myself yet I’m still here sicker and sicker because of waiting lists.
The CT visit me again. Assess me again. Disappear again.
Finally my CMHT appointment comes through and I spend over an hour being assessed (again) by a CPN. She tells me that it is likely that the CMHT will take me under their care. I daren’t hope though as I’ve become so used to let downs. In fact I will find out this Thursday if the CMHT will treat me and what this treatment will provide. So I’ve reached this point now where just day to day functioning is a challenge and actually it’s 6 months later and I’ve not even started any treatment. That’s pretty ridiculous right? I’m scared to imagine what might have been had there not been a 6 month waiting list. Would I have reached this point? Would I still be working?
And this is only the start. For what it’s worth I still haven’t received the flippin’ IAPT appointment through.
And if you think that’s laborious to read then I promise you that’s nothing compared to living it. I’m posting this so that next time you hear the ‘mental health services woefully underfunded’ headline you know what that means. It means people like me (who are just like you) living in a total hell, watching their illness progress uncontrollably. It means days off work sick with colleagues bearing the extra load (and probably grumbling!), it means kids wondering why mummy is in bed so much, it means my life falling apart and I am only one of many.
There is so much stigma around this. I’m not really supposed to talk about it. Imagine if people knew…well, this is the tip of the iceberg folks and if you think it sounds shitty you’d be right. If this has affected you at all then guess what – mental health services are actually relevant to you too!
Now, I’m going to convince myself to get up and try and act normal. Fake it til you make it right?
IAPT – ironically named Improving Access to Psychological Therapies. They are a primary care provider. Primary care is like the entry level care, the first people you see. GPs are also primary care.
CMHT – community mental health team. This is a cross disciplinary team made up of psychiatric nurses, social workers, psychologists and psychiatrists. This is secondary care ie more specialist. The CMHT discuss your case and decide on a plan.
CPN – community psychiatric nurse. Part of the CMHT.
CT – the crisis team. These are, I dunno, CPNs maybe? They are a bit like the emergency services of mental health. Essentially if someone’s having a crisis then they bob along. They could recommend hospitalisation or they could give you a leaflet and many things in between I reckon.
Hope that helps.