@lucywriter‘s #MadCovidDiaries 19.11.2020
They’re off-rolling us. To make room for people who are likely to be a quick fix, who’ll show that the service gets results.
How long does it take from the point of crisis to being considered stable enough to be discharged from community mental health services? According to my psychiatrist, it’s six months.
That’s the time that has elapsed between my last trip to A&E after serious self-harm in May, and now, two weeks into lockdown two. In that time, I’ve had two appointments with him, both by phone: hardly the best way of establishing whether someone is well or not. I’ve also been allocated a new care coordinator, but again, we’ve only communicated by phone and text.
I’m no expert, but these circumstances don’t seem optimal for deciding whether a patient should be discharged or not, but my psychiatrist has decided that (barring any major incidents) I’ll be dropped by secondary services in the new year, and referred back to my GP for ongoing care.
Why? Because there’s been an influx of new referrals to the community mental health team due to the emotional effects of the pandemic, and it’s resulted in a bigger caseload than the CMHT can cope with.
How do I know this? Because he told me.
I suspect that maybe he shouldn’t have. He’s a very effusive Italian who is somewhat unrestrained in what he says. He also repeatedly tells me that I’m an ‘intelligent woman’ with ‘good personal resilience,’ so perhaps he thought that I would be calm, understanding and accepting of his decision.
(I have been calm. Very, very calm. I know what happens if you disagree with a psychiatrist’s plan, especially if you’re angry or upset about it. Three little letters: BPD).
But whether the decision was his alone, or whether it’s trust policy and he was under pressure from the powers that be to off-roll as many long-term patients as possible, it feels wrong on so many levels.
Reason 1: I don’t think six months is long enough to prove that I’m well enough not to need to be under the CMHT. Historically, my severe depressive episodes – the ones that have nearly killed me, and see me hospitalised for my own safety – tend to recur every six to eight months. I very much hope that the medication regime that I’m now on is going to keep me stable, and I certainly don’t feel like I’m about to spiral into chaotic crisis, but at this stage, it’s just too early to know.
Reason 2: I’m on quite the cocktail of fairly heavy-duty psych meds at high doses. The last time I tried to reduce one – under medical supervision – I ended up in hospital for weeks. There’s a fair amount of evidence suggesting that people who have recurrent severe depressive episodes should stay on treatment long-term: anywhere between five to 10 years and for life. My GP is okay, but he’s not confident at all in managing my psych meds, so who’s going to be in charge of monitoring doses and side effects, and deciding if, when and how I should try to wean off them?
Reason 3: he’s making a decision purely based on how I sound on the phone. I haven’t seen him in person since January, and a few weeks after that, I ended up in the day hospital after being talked down from a bridge. Without seeing me face to face, how does he know how I really am? Can he tell whether I’m ‘kempt’ (that classic psychiatric demarcation of whether someone is Mad or not), or speaking to him in unwashed pyjamas? Does he know if I’m calm and composed, or shaking with anxiety? Okay, I’m doing well at the moment, but can he confidently make that decision on the basis of two phone calls?
The irony (or maybe hypocrisy) is that the day after my last phone appointment, I received a generic letter from the CMHT. It read:
‘I know that this [lockdown 2] is likely to be a time of increased anxiety for you, and I want to reassure you the NHS and [name of trust] are working very hard to ensure our service users feel supported and that you and our staff feel safe during this uncertain time.
‘Staff will be in touch if there are going to be any changes to the way we deliver your care and support, otherwise please assume that the service you are currently receiving will continue as usual.’
Continue as usual? I’d literally been told just 24 hours earlier that I was to be discharged. And while my care coordinator is trying to find out what’s going on, I don’t hold much hope of the decision changing.
I feel much empathy for people who have suffered mentally as a result of the pandemic, whether through loneliness, unemployment, bereavement, or working on ICU wards and witnessing multiple deaths. But there’s a difference between the reactionary onset of depression or anxiety caused by Covid-related issues and enduring severe mental illness.
To me, it seems pretty obvious what’s going on. Mental health trusts are under pressure to keep waiting lists down for new referrals – under 18 weeks is the aim. It’s also within their interests to ‘fix’ people quickly, whether through six months of meds or six sessions of CBT, so they have demonstrable success rates.
Those of us with long-term mental illness and/or complex presentations, however, are bad for their stats. Many of us have been under secondary services for years with no drastic improvement. We take up valuable caseload space with no end in sight, monitored, managed and maintained with no realistic hope of being ‘cured.’
And that’s why they’re off-rolling us. To make room for people who are likely to be a quick fix and show that the service gets results. I’d like to think they want to help people get better, too, at least on an individual level as doctors, nurses and social workers, if not at board level, but I question the ethics, decision-making and safety of choosing to ditch patients who spend large parts of their time very unwell. It feels a little like discharging a patient in need of a hip replacement to treat someone with a sprained ankle.
I don’t think I’m anything special. I know I shouldn’t feel entitled to be under the CMHT. My care coordinator may yet be able to pull strings so that I’m not left unsupported, but this isn’t just about me. I’m in the fortunate position – unlike many, many others with severe mental illness – that I can go private if need be, but this is systemic, and it’s not right.
People will die, not with Covid, but because Covid-related mental health issues have cast them out of services that they still need. There will be a hidden cost to this pandemic, and I’m afraid that it will be paid with Mad people’s lives.
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One thought on “They’re off-rolling us. To make room for people who are likely to be a quick fix, who’ll show that the service gets results.”
This is really well written, it’s so hard to explain that we (long term service users) are in need of help without sounding like we think we are more entitled than anyone else and making it sound like they don’t deserve help when that isn’t what we mean.
I feel like the services forgot about me before the pandemic so now it’s even worse.
I really hope things do get sorted out for Lucy and they get the help they need.