Over the past few years, I have drawn much strength from the posts in Talking Point, but have never posted myself. This time I can’t hold back!
I lost both my parents this year within 3 months of each other. For mum, it was a slow degeneration with Alzheimer’s but Dad’s decline was somewhat different! He cared for Mum at home until he was no longer able due to stress and what became ill-health and the beginnings of the loss of cognition. He visited her daily in the care home where he himself became a resident in October 2017 following a serious accident at home. He had advanced metastatic prostate cancer and a diagnosis of Lewy Body Dementia, having worked with the Dementia Rapid response team for a while at home he had tried medication which made him worse (hallucinations and mobility/balance problems). During the accident at home, he sustained a fractured skull and brain haemorrhage. 2 days after the accident his cognition was significantly lower than previously along with his mobility, communication and daily living functions.
He was assessed for CHC in early January 2018 but was only granted FNC, then moved to the nursing floor of the CH. His decline was remarkable, all the staff said the same, he became aggressive and was unpredictable. He was suffering pain (bone metastases), kept removing his catheter, repeated urine infections and was trying to escape. His hallucinations were very traumatic for him and he could recall them vividly. Eventually, the CH requested support from the dementia support service (because they were finding him difficult to manage without medication and wanted to know if there was anything they could give him to calm him/make him more manageable). The Dementia specialist said no. During this period of time, my mum died in the care home and we were a little distracted from our pursuit of help for dad for a few weeks.
Dad’s 3-month review was due in early April and we had requested in March that when this came it should be conducted as a repeat DST. The review never happened until a safeguarding case was opened against the nursing home for trapping dad in a room to keep themselves and other residents safe (middle of the night). Suddenly the SS and CCG thought it may be a good idea.
On 10th July, as the investigation into safeguarding was ongoing, the nursing home manager out of the blue told me that they could no longer allow dad to live at the CH because of his challenging behaviour and that we would have to find a specialist home which would come at a heavy cost for us. (Dad self-funding). I was very shocked to hear this as I understood the home to be an EMI setting.
3 days later on the 13th July I was contacted by the nurse with a message from the GP that Dad was dying and where did we want him to be looked after – home/hospital or at the care home. The DST review meeting was scheduled for 18th July (which was immediately cancelled) and the CCG told me that Dad would be fast-tracked and so pay no more towards his care. The care home cancelled the meeting with social services which was scheduled for July 27thand Dad’s case never got heard/reviewed. He died on July 25th.
We then received a bill for the care home final month for the full amount – apparently, the fast track application had been rejected. I spoke to the CCG who informed me that it had been filled in by someone at the care home who wasn’t allowed to do this (RGN at the home), it was sent back to the CH for them to refer it to the GP. Meanwhile, they closed the case until the GP sent it back to them. They never received it from the GP - hence Dad didn’t have the promised funding for his remaining days.
My questions are:
1. Is it a complaint or an appeal? Do I make a complaint (delays in assessments) or an appeal for his funding from the time that the 3-month review SHOULD have taken place?
2. Should it be a family’s responsibility to chase up fast-track funding? Surely the GP making the prognosis should automatically call it in to the CCG.
3. We firmly believe that Dad should have had access to funding as his needs were so complex and unpredictable. His cancer was terminal and his dementia was worsening by the day. We would like to appeal for retrospective funding from the time his 3-month review should have happened (considering his decline there should have been NO delay in this assessment). Could we do this or do we have to lodge a complaint first? If we make a complaint who are we actually complaining about? This sounds stupid, but it’s the whole ‘system’ that let dad down. Always ‘waiting to be optimised’, ‘waiting for the Dementia service or the Psychiatrist report’ before committing to action, ‘waiting till the doctor pays a routine visit to the Nursing Home the following week’… all delays were out of our control and totally frustrating.
Apologies for the essay… and I deleted half of it as well!!!
Any advice gratefully received.
PS> I have downloaded and digested all advice from everywhere but despite the research, I just can’t answer the above questions…
I lost both my parents this year within 3 months of each other. For mum, it was a slow degeneration with Alzheimer’s but Dad’s decline was somewhat different! He cared for Mum at home until he was no longer able due to stress and what became ill-health and the beginnings of the loss of cognition. He visited her daily in the care home where he himself became a resident in October 2017 following a serious accident at home. He had advanced metastatic prostate cancer and a diagnosis of Lewy Body Dementia, having worked with the Dementia Rapid response team for a while at home he had tried medication which made him worse (hallucinations and mobility/balance problems). During the accident at home, he sustained a fractured skull and brain haemorrhage. 2 days after the accident his cognition was significantly lower than previously along with his mobility, communication and daily living functions.
He was assessed for CHC in early January 2018 but was only granted FNC, then moved to the nursing floor of the CH. His decline was remarkable, all the staff said the same, he became aggressive and was unpredictable. He was suffering pain (bone metastases), kept removing his catheter, repeated urine infections and was trying to escape. His hallucinations were very traumatic for him and he could recall them vividly. Eventually, the CH requested support from the dementia support service (because they were finding him difficult to manage without medication and wanted to know if there was anything they could give him to calm him/make him more manageable). The Dementia specialist said no. During this period of time, my mum died in the care home and we were a little distracted from our pursuit of help for dad for a few weeks.
Dad’s 3-month review was due in early April and we had requested in March that when this came it should be conducted as a repeat DST. The review never happened until a safeguarding case was opened against the nursing home for trapping dad in a room to keep themselves and other residents safe (middle of the night). Suddenly the SS and CCG thought it may be a good idea.
On 10th July, as the investigation into safeguarding was ongoing, the nursing home manager out of the blue told me that they could no longer allow dad to live at the CH because of his challenging behaviour and that we would have to find a specialist home which would come at a heavy cost for us. (Dad self-funding). I was very shocked to hear this as I understood the home to be an EMI setting.
3 days later on the 13th July I was contacted by the nurse with a message from the GP that Dad was dying and where did we want him to be looked after – home/hospital or at the care home. The DST review meeting was scheduled for 18th July (which was immediately cancelled) and the CCG told me that Dad would be fast-tracked and so pay no more towards his care. The care home cancelled the meeting with social services which was scheduled for July 27thand Dad’s case never got heard/reviewed. He died on July 25th.
We then received a bill for the care home final month for the full amount – apparently, the fast track application had been rejected. I spoke to the CCG who informed me that it had been filled in by someone at the care home who wasn’t allowed to do this (RGN at the home), it was sent back to the CH for them to refer it to the GP. Meanwhile, they closed the case until the GP sent it back to them. They never received it from the GP - hence Dad didn’t have the promised funding for his remaining days.
My questions are:
1. Is it a complaint or an appeal? Do I make a complaint (delays in assessments) or an appeal for his funding from the time that the 3-month review SHOULD have taken place?
2. Should it be a family’s responsibility to chase up fast-track funding? Surely the GP making the prognosis should automatically call it in to the CCG.
3. We firmly believe that Dad should have had access to funding as his needs were so complex and unpredictable. His cancer was terminal and his dementia was worsening by the day. We would like to appeal for retrospective funding from the time his 3-month review should have happened (considering his decline there should have been NO delay in this assessment). Could we do this or do we have to lodge a complaint first? If we make a complaint who are we actually complaining about? This sounds stupid, but it’s the whole ‘system’ that let dad down. Always ‘waiting to be optimised’, ‘waiting for the Dementia service or the Psychiatrist report’ before committing to action, ‘waiting till the doctor pays a routine visit to the Nursing Home the following week’… all delays were out of our control and totally frustrating.
Apologies for the essay… and I deleted half of it as well!!!
Any advice gratefully received.
PS> I have downloaded and digested all advice from everywhere but despite the research, I just can’t answer the above questions…
