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.
I have no words to express how much I sympathize with your plight and hope that the NHS will take you on and that, somehow, things will improve for you in the future. Keep writing. I hope it helps. It certainly gives the rest of us some insight into how it feels to be in a situation which, god knows, could happen to any one of us any time.
As I read this edition of your blog, my jaw kept dropping until I realized that I was so astonished that my mouth was wide open with disbelief and consternation. Your situation is Kafkaesque to say the least. Who the hell are these people blithely deciding your fate? I agree with Kathy Sale who posted below and used the word "scandalous." It's beyond belief to think that you could not get someone to monitor your care overnight in your situation. I am keeping you in my thoughts that people come to their senses and soon.
Hoping that Paul can find someone with real clout - a journalist or an MP ? - to bring attention to his situation. Maybe someone reading this Substack post has contacts and can help out.
Sharing your home with a paid carer is not fun. But at least you get them to do things in your own terms. I would go for that option. And I'd take anything that comes from health authorities, of course.
This level of anxiety on top of everything else you are dealing with is just torturous. I don’t think they could possibly refuse you when no one from the NHS even came to the meeting!
Hoping the borough and the NHS is doing it’s all for you Paul. Have thought often about the difficulties you articulate so powerfully. You are so brave, so authentic and so clever. These things matter. So very much.
I have no words. It is shameful, disgusting, etc. You need to contact a newspaper and make your plight known to the media. Fingers cross you get the care you need. You are in our thoughts.
Paul, that sounds terrifying. I am willing the best possible outcome for you: a new home you like, and own, and have some independence in. I am imagining beautiful views for you, and a carer(s) who is good craic as well as being extremely competent and kind. May this come about soon!
Read this once but need to read it again. I did note your strong suicidal surge and ask you as I have before to please share this - ring up one of the many charities or talk to a trained member of staff. Glad you shared it on here. I know it will not change your desperate state but what if it did - there's always a maybe in life. Back when I've read it again. Maddi from the small village Seamer in North Yorkshire x
following up my own comment above - I did reread to make sure I got the picture. If I've got this right, at some point in the future you will have control over where it is you live - when the sale of your flat is finalised. so some control there - I know of CHC because my brother has this funding - don't need to tell you all about that, and in any case it makes me feel suicidal!!! But it was an adult social care worker that got him to that point - I take it you have such a person managing your circumstances? The assessment goes through every single aspect of your life - now at the point of assessment my brother was independent in many regards so I can't see how this plays in - it has to be the amount of additional care required to make sure you can have as much independent living as possible. And the risks - of which you have many. apologies as think you get all this - I am thinking and writing out loud so to speak. And you are right to want that funding. There are further reviews to it of course but the main thing is to get it in the first place. Wait for the decision before you go down the dark road - and even then there will be an appeal process. Pleased to hear that the LA are involved - do you have to live in this area, is it possible to find somewhere out of the LA area ? it is an emergency and you are in effect homeless. if it were me I would be exploring all areas and all opportunities. There cannot be a situation where you are left to yourself overnight - do you have an Advocate by the way, there are many organisations that provide this service. You need a voice right now and to be heard. The biggest thing you are facing though is your fear. This is sometimes overwhelming you - please talk about this - god knows it is a frightening thing what you describe. If you can meet this fear, not alone, but with the strength of family and friends it might be easier.
I think all due care will be paid and I also think you stand a good chance of the CHC funding. Paul I have gone on enough - wishing you all the calm in the world and to leave tomorrow to itself. Just be in today. The garden by the way is a place of healing - if you do go out there, use it to be calm and connected again. with love Maddi
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
This is indeed staggering--keeping you in my thoughts.
I have no words to express how much I sympathize with your plight and hope that the NHS will take you on and that, somehow, things will improve for you in the future. Keep writing. I hope it helps. It certainly gives the rest of us some insight into how it feels to be in a situation which, god knows, could happen to any one of us any time.
As I read this edition of your blog, my jaw kept dropping until I realized that I was so astonished that my mouth was wide open with disbelief and consternation. Your situation is Kafkaesque to say the least. Who the hell are these people blithely deciding your fate? I agree with Kathy Sale who posted below and used the word "scandalous." It's beyond belief to think that you could not get someone to monitor your care overnight in your situation. I am keeping you in my thoughts that people come to their senses and soon.
Hoping that Paul can find someone with real clout - a journalist or an MP ? - to bring attention to his situation. Maybe someone reading this Substack post has contacts and can help out.
Sharing your home with a paid carer is not fun. But at least you get them to do things in your own terms. I would go for that option. And I'd take anything that comes from health authorities, of course.
They need to get cracking on your aftercare. Scandalous that you should have to face such inefficiency.
PS. Maybe contact a paper like the Guardian and offer them an article on your story?
This level of anxiety on top of everything else you are dealing with is just torturous. I don’t think they could possibly refuse you when no one from the NHS even came to the meeting!
YNWA
Hoping the borough and the NHS is doing it’s all for you Paul. Have thought often about the difficulties you articulate so powerfully. You are so brave, so authentic and so clever. These things matter. So very much.
I am so sorry you are enduring this. I hope something positive happens for you soon. Keep writing. People need to understand how hard disability is.
This sounds so difficult, I’m so sorry.
I have no words. It is shameful, disgusting, etc. You need to contact a newspaper and make your plight known to the media. Fingers cross you get the care you need. You are in our thoughts.
Paul, that sounds terrifying. I am willing the best possible outcome for you: a new home you like, and own, and have some independence in. I am imagining beautiful views for you, and a carer(s) who is good craic as well as being extremely competent and kind. May this come about soon!
Read this once but need to read it again. I did note your strong suicidal surge and ask you as I have before to please share this - ring up one of the many charities or talk to a trained member of staff. Glad you shared it on here. I know it will not change your desperate state but what if it did - there's always a maybe in life. Back when I've read it again. Maddi from the small village Seamer in North Yorkshire x
following up my own comment above - I did reread to make sure I got the picture. If I've got this right, at some point in the future you will have control over where it is you live - when the sale of your flat is finalised. so some control there - I know of CHC because my brother has this funding - don't need to tell you all about that, and in any case it makes me feel suicidal!!! But it was an adult social care worker that got him to that point - I take it you have such a person managing your circumstances? The assessment goes through every single aspect of your life - now at the point of assessment my brother was independent in many regards so I can't see how this plays in - it has to be the amount of additional care required to make sure you can have as much independent living as possible. And the risks - of which you have many. apologies as think you get all this - I am thinking and writing out loud so to speak. And you are right to want that funding. There are further reviews to it of course but the main thing is to get it in the first place. Wait for the decision before you go down the dark road - and even then there will be an appeal process. Pleased to hear that the LA are involved - do you have to live in this area, is it possible to find somewhere out of the LA area ? it is an emergency and you are in effect homeless. if it were me I would be exploring all areas and all opportunities. There cannot be a situation where you are left to yourself overnight - do you have an Advocate by the way, there are many organisations that provide this service. You need a voice right now and to be heard. The biggest thing you are facing though is your fear. This is sometimes overwhelming you - please talk about this - god knows it is a frightening thing what you describe. If you can meet this fear, not alone, but with the strength of family and friends it might be easier.
I think all due care will be paid and I also think you stand a good chance of the CHC funding. Paul I have gone on enough - wishing you all the calm in the world and to leave tomorrow to itself. Just be in today. The garden by the way is a place of healing - if you do go out there, use it to be calm and connected again. with love Maddi
Just mind blowing this situation can occur. Praying for best outcome for you.