The journey through dementia is often a lonely one , with carers tormented by guilt & left frustrated by the care system. Yet you hope that the system will work , that eventually it will kick in at some point .
For us it never has … every little step has been us the family pushing for more care, pushing for diagnosis, pushing for needs to be met.
Last week my Mum I was informed was not at End of Life - a miracle ? Sadly not , after the heart wrenching phone discussion at the beginning of July “quality of life over quantity” a consultant & doctor stated that “life wasn’t sustainable”
“comfort care only , no unnecessary meds”
Apologies made as face to face not available & that this discussion was done over the phone . As only days before we were told that Mum would be discharged home as Social Services deemed that the package of care in place was adequate 4 visits a day it seemed that finally someone actually saw Mum as she really is ( doubly incontinent, not mobile, unable to feed herself resulting in over 5 stone rapid weight loss , unable to communicate apart from no/ piano / mummy/ daddy / upstairs) The hospital finally stated that Mum needed nursing care , was at end of life, palliative care & blue book would be in place along with morphine. The air mattress & hospital bed with cot sides were in place & we could travel the 2 an a half hours to visit Mum at anytime of the day & night & stay as long as we wanted. Fast track CHC sent off & would we like Mum @ home / nursing home / near us or in the county she lives in?
TMI ( too much information ) at that moment in time - could we the family talk & get back to them please.
The relief meant I slept knowing Mum was pain free & cared for 24/7.
Imagine my surprise to be emailed last week stating that Mum isn’t at end of life, & a discharge to assess bed was being looked for?
The home close to us we put in contact with the hospital were told Mum was very mobile & aggressive, meanwhile no communication from the ward so emails to follow up unanswered phone calls.
As LPA health & welfare we asked for updates , Ward notes etc only to be told that we needed to apply to access any patient files or information - despite Ward / hospital / GP/ CCG all having copies of LPA active since 2016! Access to information not only wanting LPA but driving licence, passport, utility bills … plus Mums signature on the form . Mum not able to hold pen for years let alone sign !
Then a clerical assistant phones to say if we want to visit we need an appointment .. time slots of 1 hour every three days within a four hour time slot if available. Not able to reason or explain the situation as this clerical assistant was just letting us know yet more confusion
What was going on?
Email replies didn’t answer questions just added to confusion, leading to being told by Ward that the placement didn’t do nursing care. When asked about Fast Track CHC the reply said that the ward only did the Care component & that had been returned - but what did that mean in real terms?
Phoning the placement uncovered yet more discrepancies .. information given by the ward stated Mum was mobile, able to feed herself etc. Unable to speak to anyone on the ward - not available / will call back I decided to track down the consultant who phoned me & ask what is going on?
Google came into its own & I rang & spoke to the medical secretary.
How lovely to be told that yes what I wrote as notes from the consultant was factually correct.
Yes - Mums at end of life !
yes - Fast Track CHC should have been sorted weeks ago
yes - Mums not mobile just able to move arms & legs
Yes- morphine & driver prescribed
reason why Ward doesn’t know ???
Main hospital uses a different information portal to the community hospital - so the community hospital couldn’t see consultant notes
Reality is the ward ignored the family / phone calls / emails & created a narrative that would free up a bed irrespective of the patients needs.
The family were not communicated with, but their concerns were dismissed & ignored.
The last insult to injury after receiving 2 replies to an email after contacting PALS was a further email stating that all of my emails had been going into junk / spam - even though I’d rung to ask the Ward if they had received them.
Now don’t get me wrong - I think the NHS is amazing , family & friends work for the NHS; but there are flaws in the system!
My questions are
-when did dementia stop becoming a terminal illness?
- when did severe brain damage become a part of old age?
My solution to the care crisis is simple - stop privatising care! The D2A bed scheme brought in to allow a 6wk rehabilitation period easing pressure on a Covid stretched NHS now replaces community hospital & community based rehabilitation. The NHS are funding assessments that hospitals are uniquely placed to competently provide. Yet wards are full of care bank staff, why not invest in staff & stop private businesses profiting?
Meanwhile amidst all of the chaos patients are not getting care, medication that they need.
It’s no good creating another job title if basic care & communication has broken down.
I don’t want to say it , but I’m pleased that Mum is in hospital as Social Services wouldn’t admit that Mums care needs were beyond the 4 visits a day . I’m grateful that Mum has 24/7 care it’s what we knew was needed.
But our family’s experience of dementia mean we have no faith in the system - it’s broken beyond repair !
Honesty & patient welfare should be the priority - not the first thing that’s said “who’s paying for it”
My Mum & Dad were the first generation to pay into the NHS system & also the first generation to be so publicly discarded by their own Prime Minister as being expendable!
i have openly documented my parents dementia journey & have one piece of advice for anyone recently with a diagnosis
Your GP needs to have your corner, & be willing to advocate for you. Change GP / surgery if you aren’t happy & don’t take no for an answer.
The system is set to fail you mostly due to funding issues, so family & friends need to read NICE guidelines & quote them. Family & friends have loved & supported you for a lifetime- sadly social care etc won’t. I have been told soo many times that the “ book went out of the window with covid” ; sadly “the book” never went anywhere the moral compass of those saying that was what got lost out of aforementioned window.
Without highlighting the issues dementia patient experience change & reform cannot be brought about.
Keep posting , pushing , requesting & asking the difficult questions folks because someone somewhere will act one day to change this care system.
For us it never has … every little step has been us the family pushing for more care, pushing for diagnosis, pushing for needs to be met.
Last week my Mum I was informed was not at End of Life - a miracle ? Sadly not , after the heart wrenching phone discussion at the beginning of July “quality of life over quantity” a consultant & doctor stated that “life wasn’t sustainable”
“comfort care only , no unnecessary meds”
Apologies made as face to face not available & that this discussion was done over the phone . As only days before we were told that Mum would be discharged home as Social Services deemed that the package of care in place was adequate 4 visits a day it seemed that finally someone actually saw Mum as she really is ( doubly incontinent, not mobile, unable to feed herself resulting in over 5 stone rapid weight loss , unable to communicate apart from no/ piano / mummy/ daddy / upstairs) The hospital finally stated that Mum needed nursing care , was at end of life, palliative care & blue book would be in place along with morphine. The air mattress & hospital bed with cot sides were in place & we could travel the 2 an a half hours to visit Mum at anytime of the day & night & stay as long as we wanted. Fast track CHC sent off & would we like Mum @ home / nursing home / near us or in the county she lives in?
TMI ( too much information ) at that moment in time - could we the family talk & get back to them please.
The relief meant I slept knowing Mum was pain free & cared for 24/7.
Imagine my surprise to be emailed last week stating that Mum isn’t at end of life, & a discharge to assess bed was being looked for?
The home close to us we put in contact with the hospital were told Mum was very mobile & aggressive, meanwhile no communication from the ward so emails to follow up unanswered phone calls.
As LPA health & welfare we asked for updates , Ward notes etc only to be told that we needed to apply to access any patient files or information - despite Ward / hospital / GP/ CCG all having copies of LPA active since 2016! Access to information not only wanting LPA but driving licence, passport, utility bills … plus Mums signature on the form . Mum not able to hold pen for years let alone sign !
Then a clerical assistant phones to say if we want to visit we need an appointment .. time slots of 1 hour every three days within a four hour time slot if available. Not able to reason or explain the situation as this clerical assistant was just letting us know yet more confusion
What was going on?
Email replies didn’t answer questions just added to confusion, leading to being told by Ward that the placement didn’t do nursing care. When asked about Fast Track CHC the reply said that the ward only did the Care component & that had been returned - but what did that mean in real terms?
Phoning the placement uncovered yet more discrepancies .. information given by the ward stated Mum was mobile, able to feed herself etc. Unable to speak to anyone on the ward - not available / will call back I decided to track down the consultant who phoned me & ask what is going on?
Google came into its own & I rang & spoke to the medical secretary.
How lovely to be told that yes what I wrote as notes from the consultant was factually correct.
Yes - Mums at end of life !
yes - Fast Track CHC should have been sorted weeks ago
yes - Mums not mobile just able to move arms & legs
Yes- morphine & driver prescribed
reason why Ward doesn’t know ???
Main hospital uses a different information portal to the community hospital - so the community hospital couldn’t see consultant notes
Reality is the ward ignored the family / phone calls / emails & created a narrative that would free up a bed irrespective of the patients needs.
The family were not communicated with, but their concerns were dismissed & ignored.
The last insult to injury after receiving 2 replies to an email after contacting PALS was a further email stating that all of my emails had been going into junk / spam - even though I’d rung to ask the Ward if they had received them.
Now don’t get me wrong - I think the NHS is amazing , family & friends work for the NHS; but there are flaws in the system!
My questions are
-when did dementia stop becoming a terminal illness?
- when did severe brain damage become a part of old age?
My solution to the care crisis is simple - stop privatising care! The D2A bed scheme brought in to allow a 6wk rehabilitation period easing pressure on a Covid stretched NHS now replaces community hospital & community based rehabilitation. The NHS are funding assessments that hospitals are uniquely placed to competently provide. Yet wards are full of care bank staff, why not invest in staff & stop private businesses profiting?
Meanwhile amidst all of the chaos patients are not getting care, medication that they need.
It’s no good creating another job title if basic care & communication has broken down.
I don’t want to say it , but I’m pleased that Mum is in hospital as Social Services wouldn’t admit that Mums care needs were beyond the 4 visits a day . I’m grateful that Mum has 24/7 care it’s what we knew was needed.
But our family’s experience of dementia mean we have no faith in the system - it’s broken beyond repair !
Honesty & patient welfare should be the priority - not the first thing that’s said “who’s paying for it”
My Mum & Dad were the first generation to pay into the NHS system & also the first generation to be so publicly discarded by their own Prime Minister as being expendable!
i have openly documented my parents dementia journey & have one piece of advice for anyone recently with a diagnosis
Your GP needs to have your corner, & be willing to advocate for you. Change GP / surgery if you aren’t happy & don’t take no for an answer.
The system is set to fail you mostly due to funding issues, so family & friends need to read NICE guidelines & quote them. Family & friends have loved & supported you for a lifetime- sadly social care etc won’t. I have been told soo many times that the “ book went out of the window with covid” ; sadly “the book” never went anywhere the moral compass of those saying that was what got lost out of aforementioned window.
Without highlighting the issues dementia patient experience change & reform cannot be brought about.
Keep posting , pushing , requesting & asking the difficult questions folks because someone somewhere will act one day to change this care system.
