Archive | February, 2021

Accept your fate

23 Feb

I am being buried alive by professionals. Each fresh attempt to get care, treatment & support for severe & enduring mental ill-health in the past 3 years since I was discharged from community mental health services has led to more & more professionals covering their own arses.

There is no way, simply no way, to get NHS mental health services or social care to respond in a constructive way when they’ve decided to exclude you from care – even when they’ve assessed you as needing that care. They’ll do anything to impose their will. You cannot win.

If you are at the start of this journey – if you’ve just been discharged from NHS community mental health care or social care – know that you cannot win. You will not get the care you need. When they discharge you saying you can be referred back quickly if needed, it’s a line.

It’s a lie.

It’s something the professional sitting in front of you is telling you because it makes their job easier. It makes it easier to get you out of the room, so they can get on with their day. It’s a line. “You can be referred back any time you need.” That’s a lie.

NHS commissioners decided a decade or so ago that the NHS would no longer provide ongoing care to people with ongoing serious mental ill-health. That’s folks living with conditions like schizophrenia & bipolar disorder who are discharged back to GP, often with no care plan.

That’s folks who live with conditions so serious they’ve been sectioned; folks who experience repeated serious health relapses; folks on depot injections. Folks who have effectively been parked, receiving no care except in crisis, with no hope of progress. They are Dustbin Patients.

That’s folks who could be living ordinary lives, whose health conditions are highly treatable, who at the very least could have suffering alleviated to a considerable extent. Tossed in the dustbin. Reduced to living in the shadows, living like animals, left in waves of agony.

If you live with severe & enduring mental ill-health & you’ve just been discharged by NHS mental health services, it’s the end of the line. Do not waste time hoping that things will get better. They won’t. When it comes to psychiatric care, it’s not “Our NHS”.

If you live with severe & enduring mental ill-health, what you’ll find is all sorts of professionals distanding themselves from you – they don’t want to witness your suffering, won’t provide any relief & just want to work with people who can be “fixed”, for that hero buzz.

Even patients who will never get better, who are terminally ill or who have lifelong conditions should receive care – we are still human beings – but no. The NHS tosses us in the dustbin. If you’re a psychiatric patient, you are worthless. An inconvenience. Toxic waste.

If you find yourself discharged from NHS mental health services while still poorly, you’re faced with a choice. Do you want to spend your time in a painful, fruitless fight with bureaucracy? Or focus on your bucket list instead?

False hope causes so much pain. False hope wastes so much time. It’s just pushing air.

What we’ll see with covid is a load of new patients going to the front of the queue – poorly “through no fault of their own” – who’ll have the meagre resources reallocated to them. Those of us already poorly further from help than ever. We will never get on a waiting list.

If you thought it was bad before, it’ll only get worse.

Specialist services will be set up, cherry-picking favoured patients – those deemed fixable within 12-18 months. Good for them! I hope they get the care they need. I hope they go on to lead ordinary lives.

For the rest of us, though, nothing. The NHS will not be providing care for those of us with existing serious mental ill-health. It doesn’t now. It’s not about to start. Don’t waste your time asking. Accept your fate.You are a Dustbin Patient.

Or fight if you fancy it. Good luck if that’s what you choose. We’re all different. I hope you succeed, I really do.

I tried everything – & I’m pretty resourceful. It didn’t work. I’ve wasted years trying to get care, all the while becoming more & more disabled. I’m pretty simple to help – I know what’s worked before. It’s not rocket science. I’m pretty ordinary. Just couldn’t get the help.

If I’d known years ago that all I had ahead of me was years of suffering & decline, I would not have put myself through it.

I’ve tried patiently waiting. I’ve tried asking nicely. I’ve tried asking firmly. I’ve tried writing letters. I’ve tried getting my GP to ask. I’ve tried my MP. I’ve tried advocates. I’ve tried solicitors. I’ve tried everything I can think of. And yet I cannot get healthcare.

I’ve had people DM with suggestions – “Have you tried PALS?” “Have you tried your MP?” “Have you tried, have you tried, have you tried?” Yes. Yes I have tried. For months. For years. No matter how poorly I become, I cannot get care. In mental health, it’s not “Our NHS”.

For any mental health professionals who’ve read this far, it is possible for you to be working really hard, to have a full diary & be seeing patients all the time AND for people like me to be going without needed healthcare. Both can be true at the same time.

If you are working within a system that operates the so-called “recovery model”, by design you will be excluding from needed care folks with severe & enduring mental ill-health & condemning us to a cycle of crisis relapses. You are working within a system that causes known harm.

If this is what you’re experiencing as a poorly person now, I don’t know if it helps to realise that your inability to access needed mental health care is not your fault; that it’s not that you’re a bad person or undeserving; that you’re not alone; that it’s the system.

The system – designed by people with fancy titles & big budgets sitting around big tables in meetings – has weighed up competing priorities & decided that people with your diagnosis or type of suffering will not be provided with care by the NHS or social care.

I tried. Now I know.

Whatever fancy plans people are coming up with for the future of community mental health care it’ll just mean one group or another excluded from care. Currently it’s folks like me, who need long-term continuity of care & treatment. We’re excluded. Who’s next?

Who’s the next category of Dustbin Patient?

Dustbin patient

10 Feb

Today in Nobody Will Take Me Seriously Till I’m Dead …

There was never any need for me to become this unwell and, the more unwell I become, the more services – GP, mental health, social care – withdraw. I have been “reaching out” for such a long time.

What those mental health awareness campaigns don’t tell you is that “reach out”, “just ask for help” is a one-time thing. Miracle cure. Get better, or get lost.

For the first few years after I came into contact with mental health services, I believed I simply had to ask the right way or find the right door or get onto the right waiting list, & that I’d eventually get the care, treatment & support I needed to get back on my feet. Not so.

I started to notice on twitter other people struggling for years to get mental health care. I assumed perhaps services in their area were unusually bad; or they needed a better advocate; or there’d been a mistake. I felt sorry for them.

Then I became one of them.

I didn’t realise till it started being done to me that, the more time that passes, the less likely you are to receive help. That, if you’re not fixed first time or become unwell again, there’s no second chance. That, the longer you are unwell, the less of a priority you become.

That it’s not an individual problem, it’s the system design. That NHS mental health services are designed on an up-or-out basis which excludes people with long-term serious mental ill-health. That I will never get the care, treatment & support I need.

Most people don’t want to see this – they want to believe there’s a just world, that there is hope, that things do come right in the end. But no. No they don’t. Get well soon – or get lost.

Funny how things turn out, isn’t it? All the time I could’ve saved myself if I’d realised this sooner. Instead, I’ve continued to put myself through a system which serves only the professionals. If only I’d realised sooner that all I was doing was prolonging my own suffering.

I tried to fight the system, but the system won.

I don’t have an inspirational story. There’s no happy ending. And there seems to be nothing that anybody can do to either get me needed care or to hold the system to account. I have become a cautionary tale. #mentalhealth

I seem to have been left behind – shoved into a zombie zone where I am the responsibility of nobody; where my suffering is irrelevant (despite what it says in all sorts of fancy laws & policies); and my demise seen as inevitable. Everyone’s got their paperwork squared away.

The professionals can all go home & sleep soundly at night, safe in the knowledge they’ve maintained their boundaries, protected service resources & done as they’re told – or, otherwise, that there’ll be no comeback because there’s no way to hold them to account.