Yesterday I got an unexpected phonecall. It was a private number. That always fills me with dread. What I really wasn’t expecting was that during a global pandemic, while my country is on lockdown, my mental health service would phone to discharge me. A lot of what ensued is a blur. I was on my back foot from the start and was just completely stunned that a stranger was calling me and trying to discharge me back to my GP. I’ve not been checked up on during this crisis so when this woman introduced herself and where she was calling from, I was immediately really pleased and impressed that they were phoning to see how I was. They weren’t. In fact, I don’t think I got asked any questions about how I am, how or if I’m coping or if I’m getting enough support. She went straight in for the kill and said they were planning on discharging me. I then spent nearly 20 minutes trying to find out why, what that would mean, how I can stay on their books, what criteria I have to meet, all the while trying not to burst into tears and have a panic attack.
More and more unexpected information came out during this phonecall including the fact that my psychiatrist retired in September or October which I’d not been told. I apparently should have been written to by him but even she couldn’t find a record of that letter on their system. He had, seemingly wrongly, promised to keep me on their books until I was well enough to attend treatment in the future. He’d apparently promised this to a lot of patients, all of whom I’m assuming are getting the same out-of-the-blue phonecall passing them back to their GP with no warning or support. It means that I’ll no longer be allowed to have visits from my support worker, the only professional involved directly in my care who actually sees me and knows what I’m going through and how damned hard I’ve worked despite the lack of visible progress or improvement and who continues to support and boost my confidence and self-esteem and treat me like a valuable human being. She has to work under a clinical lead and I’m not allowed one of those because I don’t fit the criteria and so she won’t be allowed to work with me either.
I know that mental health teams are increasingly underfunded. Before all of this, I worked in one. I know all too painfully the limitations of the services, the understaffing and the squeezing from all angles. I’ve tried to make myself as little of a burden as possible on the NHS and specifically on my local mental health team. I’ve not agreed to appointments unless I really believed I’d be well enough to attend. I stopped booking them when it was making me worse and I was becoming unreliable at attending because I didn’t want to waste appointments that could be given to other people. I didn’t agree to have therapy that I’ve previously had that I knew wouldn’t help me and that again, I wasn’t well enough to attend. All I asked was to see my support worker for an hour every couple of months and to be kept on their books, under a named psychiatrist, so that I didn’t have to wait weeks to be re-referred in the future by a GP surgery where I’ve met none of the doctors and the last doctor I was under kept me on a medication that my psychiatrist described as basically poisoning me with horrendous side effects.
Oddly, this phonecall came the day after I had a completely unexpected letter from the same team telling me that an appointment had been booked for me to have a telephone consultation with a new psychiatrist. I have no idea who booked this or why and the lady on the phone yesterday wasn’t aware until I highlighted it and she checked my records and even she didn’t actually know why it had been booked. I was already stressed and anxious because of this random appointment but it also really upset me and made me pretty angry because I begged to have telephone appointments 5 years ago so that I could still engage with support but not make myself really ill trying to go to appointments. I was always flat-out refused this and told that it was completely impossible. I know that we’re living through “unprecedented times” right now and that people are having to change and adapt their work in order to maintain services during this pandemic but I cannot for the life of me work out how it’s possible, doable, and acceptable to have telephone appointments with a psychiatrist now, when a few years ago it was completely impossible even though that meant that I had to stop having any support from a trained professional because I was too ill to do it in the way that they offered.
All I kept being told yesterday was that their service only offers time-limited, goal-specific help, none of which I’ve ever been well to engage with because the offerings are so limited and are all aimed at people who are much less ill than I am. All I’ve ever been offered (apart from medication which we’ve all agreed I can’t and shouldn’t take again) is 6 sessions of CBT and group art therapy run by a support worker, the same job role I had when I was working. Yesterday, I asked what people like me are meant to do, those of us who are too ill to engage with what they offer and she said there were community treatments, all of which she acknowledged required you to be well enough to physically attend. I’m severely agoraphobic. I can’t go out. So the upshot seemed to be that there’s nothing for me, no service, no treatment, no one to keep an eye on me or make sure I’m not spiralling. No one unrelated to me who I can talk to about how this is actually all making me feel or what it’s like to live like this which actually leaves me with no one to talk to about that because I just can’t bear putting that on people around me. My social network has reduced and reduced over the years of my illness and each time I’m struggling, there are fewer people to talk to and I feel further and further away from them and from normality. I’m good at getting through the day-to-day stuff, I’m great at ignoring my limitations and working within them to the point where I sometimes forget that I’m ill and often forget what I’m not capable of until I’m rudely reminded by circumstance and it all comes flooding back. I don’t have people to talk to about how frightened I am, about how much my belief and hope are fading as each month passes. It’s not because I don’t have people close to me, it’s because I can see how painful it is for them when I talk about these things and I know that what often keeps them going is my grit and determination and continuing belief that I’ll get better. I don’t have the heart to tell them that I don’t know if I believe that anymore and that although I mostly do think that I’ll be better, albeit not cured, one day, that image is increasingly vague and I’ve got no idea of how to get from here to there, what to do to make it happen or when it may occur. Never in my wildest dreams did I think I’d be 6 months from turning 30 and still severely agoraphobic and unemployed. I know I achieve a lot and this isn’t meant to be a pity-party but it’s very hard to keep yourself going, day after day, year after year, when you have to fight for even the basics of medical support and then have that randomly threatened with being removed.
The only reason I’m not now discharged is because of this mysterious appointment that’s been arranged for me. She eventually agreed that I could speak to the new psychiatrist and see what he says and that we’d “discuss it”. So now, I get to spend the next month, waiting and trying to work out how or even if I should try and persuade them to keep me on their books. Because even if I manage to stay this time, how long will it last? It will always be hanging over me. They offer me next to no support and no treatment anyway so in many ways I won’t be any worse off without them. But it feels like I’ll be even more alone, even more adrift and cut off from reality, normality, and help. It makes me sad and angry that people like me are just abandoned. That we’re so ill we can’t function and are essentially punished for that by having accessible treatment denied. So many people have the opposite problem of needing help but not being so ill that it’s deemed necessary and having to wait until they deteriorate before anyone will treat them. Increasingly it seems that there’s a right way of being mentally ill and more and more of us are failing to do it that way and then get denied treatment. I can’t make my illness fit in with the criteria they set, I can’t get myself well enough to attend the treatment that they say will get me better and so rather than bring any of it to me or even keep it paused until a miracle happens and I can get myself there, they decide that I look bad on their books and need to go. I wonder how many people out there exist as I do? I don’t think we’re even counted. They know how many people have a diagnosis, how many people went through therapy, how many people had a psychiatrist. But once I’m discharged, I won’t exist anywhere as a statistic. I won’t be counted as one of the people they failed, I won’t be listed somewhere as one of the people who was so severely ill that they couldn’t be treated. I’ll just disappear. Even statistics for houseboundness don’t seem to exist. I’ve looked and looked over the years and never found anything that even attempts to give numbers to how many people are physically or mentally ill enough that they’re confined to the house. I know there are many of us. The sheer number of people who, well-before lockdown or Coronavirus, were arriving at my blog because they wanted advice or help to cope with being housebound, is huge and I’m just one blogger with a small following and a pretty small reach. There must be thousands of us. But we’re all hidden away and mostly we’re forgotten about and just left. Lockdown has shown just how hard living your life indoors is to the masses. People are going stir crazy. They can’t work out how to entertain themselves, how to stop eating every 30 minutes, how to work, how to get medical help. This has been my life for 6 years and I’ll tell you for nothing, there’s never been a better time to be housebound because of the sheer number of free resources that have been released. So many things have adapted and been made accessible so that life can continue despite us all being indoors and still it’s unbearable for many people. Spare a thought for those of us for whom this is our life permanently, who don’t get to do PE with Joe or have church services via Zoom or watch Andrew Lloyd Webber musicals in our lounge the rest of the time. The majority of the time, these things are completely inaccessible to people like me and now even mental health treatment, in the midst of a pandemic, is being withdrawn because I don’t fit into the box neatly enough. As yet, I’m undecided about what to ask for in this appointment and whether I’ll put the energy into trying to fight or just give in this time because as seasoned readers of my blog will know, absolutely every step of the way, I’ve had to fight to get any treatment or support and I’m so unbelievably tired of doing that and being let down. I always thought that I’d get through this on my own, in my own time and I have no idea if that’s true but it looks like that’s the only option I’m left with and I’ll just have to hope that one day, the solution will reveal itself and I’ll somehow get from here to “better”.
In The Midst Of Madness 