I am technically supposed to be discharged from rehab in five days. (We’ll come back to that a little bit later.) In preparation, two important meetings occurred this week which have significant bearing on both my short and long-term futures. In many ways it now feels as though I am awaiting sentencing after an extraordinarily long trial.
The first meeting was with a representative from my local authority belonging to the emergency housing department. This is because I am at the moment basically homeless. My old apartment was inaccessible for wheelchairs, and so my family have had to sell it. The sale is going through at present. Unfortunately, though, they haven’t yet been able to find an alternative for me to buy and move in to as, unsurprisingly, it is difficult both to find somewhere suitable and also to purchase it quickly.
So whilst it is good news that the local borough has accepted me for consideration, the main outcome of the meeting this week was to tell me that because I need somewhere wheelchair accessible at short notice, they probably just don’t have anywhere for me. What this means, my case manager later explained, is that the most likely destination for me once I leave rehab is some kind of care home. This won’t be an old person’s nursing home, as the level of care I need is of a higher grade. But it’s not exactly going to be a specialist unit where they regularly deal with spinal patients, or which even has gym facilities I can use to try and somehow continue physical rehab. So barring some miracle on the property market, the housing future in the short term looks bleak.
Although perhaps not immediately. The lack of there being anywhere for me to go means that I cannot in fact be discharged from rehab just yet. The most likely outcome for the rest of January, at least, is that I go onto what is here called “maintenance”. This means I am allowed to stay rather than being turfed onto the street, but entitled to only the barest physiotherapy provision. In essence I am bed blocking, and so do not get the level of rehab treatment that somebody considered not ready for discharge is entitled to. (If I thought I was bored before, it looks like I’m about to enter a whole new level of tedium.) At any rate, the total lack of clarity about where I will even be in two weeks’ time is pretty harrowing, and hardly a recipe for stress relief at a time when my life is already far from a pretty picture.
The second meeting this week was even more important. This was to determine whether the care funding I receive in future is provided either by the NHS or my local authority. This matters. If it comes from the NHS (at least as I understand things), it is not means tested and I could be entitled to the maximum possible funding available, helping to pay not just for care but also specialist disability equipment. If it comes from the local authority, it will be means tested, and I will get significantly less.
This has a further bearing, of severe importance. If the money comes from the NHS, then I get what is called CHC funding. CHC funding entitles me to 24 hour care once I leave. If I don’t get CHC funding it is very unlikely I will get care beyond two or maybe three visits a day. Why does this matter? Because if I don’t get CHC funding, I don’t see how I can survive. This may seem melodramatic, but it is not really. Given my history of autonomic dysreflexia (Google it, or see previous posts), if I am left alone for long periods, especially overnight, then it is just a matter of time until I die. This is because several times now my catheter has become blocked due to sedimentation, and I’m simply unable to unblock it by myself due to being paralysed from the chest down with only the most minimal of hand function. Here at rehab I am able to ring the call bell and have trained staff resolve the problem. By contrast if I am left alone every single night then it is simply a matter of time before a blockage happens, AD ensues, with nobody to call for help, and I lie there going through strokes and seizures until I die.
So this was, evidently enough, a very important meeting. It was somewhat surprising therefore to discover that nobody from the NHS side of the assessment was assigned to join. The staff from rehab were staggered. After some phoning around to establish why nobody from the medical side was joining the MS Teams call (itself set up by the NHS part of the assessment), it transpired that they simply weren’t bothering to send anybody. A social worker from the local authority did attend, and actually came in person, and so the rehab team decided to proceed as best they could. This apparently was new territory for them, having never had the medical side of the assessment simply in their hands without having to fight the patient’s corner against an NHS representative whose job is to claim that the case isn’t that serious, ie trying to make sure the person doesn’t get the maximum funding.
Having no desire to sit through an hour of people debating how bad my situation is, after showing my face I wheeled off to sit in another part of the hospital. As it happens, I was later told that it might be a good thing that nobody from the medical side came to try and downplay my condition. This way around the team from rehab could make the strongest pitch for me to get maximum CHC funding without anybody there to contradict them. But at the moment only time will tell how it went. There is no guarantee that the dice roll my way, I have been warned, and as incredible as that they seem. For all I know I may be deemed not eligible for CHC funding simply based on a bureaucrat rejecting the application put on their desk. We’ll see.
I do feel therefore that this is a crux moment in whether or not my life goes on. Put simply, I refuse to spend weeks being left in a room every night, wondering if this is finally the occasion my catheter blocks and I die alone in the dark. If I fail to secure CHC funding, and that is the future that awaits me, then I refuse to wait for it. I will instead take matters into my own hands, or what is left of them, and put an end to this nightmare sooner rather than later. There is a cold spell forecast soon, which means all I need to do is sit outside one evening long enough for hypothermia to finish me off (which shouldn’t take long given that my tetraplegic condition means my body can’t regulate heat anyway). It won’t be pleasant, or even peaceful, but I will at least have the dignity of choosing how this ends: one last flurry of agency.
A strange situation to find myself in, I have to admit. Three months ago, I couldn’t even bear the thought of having any carer whatsoever, too great an assault on my sense of who I fundamentally am did it seem. (Coming to terms with the realisation that the NHS definition of independence is consistent with having somebody wash you after making you shit in bed every morning was initially too much to handle.) But eventually I managed to process this and accept some level of care as necessary, at least in the short term. Now however my future seems so dire that I am faced with two potential paths. The first is permanently sharing where I live with a stranger, with whom I probably have nothing in common, and with whom I have nothing to talk to about other than the mundanity of my bodily functions. I despise this option. But the second is even worse. To be left alone in the dark from 8pm for twelve hours, wondering if this is the night that I die painfully by myself.
And so I await my sentence. If nothing else, this bleak account may help you to understand why I fall asleep every night hoping I never wake up, and wake up every morning wishing I was already dead.
With everything up in the air, I can sympathise with the impulse to be master of your own destiny and steer a Hoth-bound course of your own making.
I am concerned that your proposed one-way journey onto the pack ice will negatively impact the likelihood of you being accepted through the portals of Valhalla. You deserve better and I think you should fight for it if you have to. That would be a more positive way of taking back some measure of control.
Discharging long-term inpatients is an area where, in my direct experience, the NHS was prat-falling on a regular basis long before the current funding crisis. In fact, a pair of dire incidents both involving the improper discharge of patients were the source of my first and second resignations from the service. (They enticed me back the first time. I stupidly ignored my gut instinct which was telling me to run for all I was worth.)
At the point in your hospital stay where you are nearing the end of the conveyor belt and are perhaps expressing concerns that there doesn't appear to be anything beyond it, responsibility for your care, and your future, will have shifted, usually rather gracelessly, into the hands of individuals who will, at best, have only briefly met you in person, and who seldom, if ever, engage with patients at any meaningful level.
It is often a jarring transition and could certainly be done better and with more consideration. To these people you are an abstraction. Some will argue that this distance and detachment is necessary to do the job. I beg to differ. The absence of empathy, that was a disturbing hallmark of members of the Discharge Team at the hospital where I worked, was rivalled only by a collective dearth of common sense and a tendency towards covering their eyes and their ears, so as to avoid being made party to any inconvenient truths. The impact of this is that decisions were made that practically guaranteed patients would end up back in hospital when, had a little more thought been given, and a little more care been taken, the patient would have stood a better chance. This perverse model of care - that is exacting and committed right up until the end, when people who have had no prior involvement step out of the shadows, push all the chips into the middle of the table and make some wild speculative gamble - never sat well with me. Sometimes – actually a lot of times – the NHS is its own worst enemy.
I assume that, after you are discharged, your notes will make their way to your hospital's equivalent of the coding office where esoteric formulae copied from the walls of mysterious South American pyramids will be used to calculate how much money you have cost the NHS. From that limited financial perspective it makes sense that, if you are no longer a patient and only remain at the hospital because there is nowhere else for you to go, then they should dial down your treatment. The reality is that you still occupy a hospital bed. You are not sharing it with the person who is waiting to take your place. So why not provide the rehab. Why allow a patient to languish and potentially backslide, undoing the costly and painstaking work that has already been done by the hospital?
My experience of working for the NHS left me with a pronounced nervous tick that made me want to reach over the table and slap anyone of the useless middle-men (I was one for a while) who uttered the buzz-phrase 'joined-up care.' There is no joined up care. There are yawning canyons and it takes good people to guide you over and around them.
It is concerning that the NHS wilfully avoided sending a representative to a meeting that will have a fundamental impact upon your future. I would go so far as to call it negligent. There may adult safeguarding issues if they have not taken appropriate steps to see that your best interests are served, given your vulnerability. Added to that, they have placed you in a position of mental anguish where you don't have a clear picture of which way the NHS is leaning. You are expected to subjectively divine their intent from their absence, as if you are reading tea leaves.
You disability is profound and I fail to see how you can manage without CHC funding. If it were denied then you would be left in a demonstrably unsafe environment, tortured by the knowledge that the failure of a piece of fundamental medical equipment might bring about your painful and humiliating end. Added to this is the mental torture of knowing this event, which might occur at any time, is avoidable with the right care. Nobody should be expected to live like that. It is inhumane.
I read, many years ago, one of the Greek philosophers – you would probably know who. He was describing a person who is not evil but who, in the knowledge of what is the right thing to do, fails to follow through and take the appropriate action. There seem to be a lot of individuals like this who take the path of least resistance, even when they are aware that doing so will cause harm. Should such a person deny you the appropriate funding, I would urge you to fight back. Don't allow someone so mediocre to draw the blade across your throat without at least spitting in their face, figuratively speaking, of course. Don't allow a pawn take you off the board.
courage Paul on pense beaucoup a toi meme si j'ai conscience que c'est une aide minuscule par rapport a tes souffrances. on t'aime