Palliative Care - Hopefully this may help someone…….

[prittlewell]

My Mother had dementia for 8 years, and due to other health issues, she could no longer manage at home with carers, so she moved into residential care in March 2018.

Almost from day one, despite having both PoA’s, it seemed a continuous fight with her GP and Care home to get information and to input to Mum’s care.

I was fortunate, in that my DIL was a Palliative Care nurse, and knows the system, and also, many of the local GP’s.. She advised me to apply to have Mum put under the care of the Palliative Care team. She knew Mum’s GP and said he would likely object, and will tell you that you can only be transferred to the Palliative team at End of Life. He did, and so did the Care Home………but this is NOT true, you CAN be referred and placed under the Palliative team if you have ANY life limiting illness, even if death is not imminent. Contrary to what your GP may tell you, It is NOT just End of Life.

After a couple of strongly worded emails to the GP, Mum was placed under the care of the Palliative team a year ago when she was in relatively good health, although doubly incontinent, and needing a hoist.

Mum deteriorated, unexpectedly, very quickly in June this year, and I am so glad she was under the Palliative team. They stepped in straight away. Once we knew Mum was likely End of Life, the Palliative team arranged a GP video call and provided the home with all the EoL drugs that may be needed. I had the mobile number of Mum’s personal PC nurse, and Mum was put on pain patches (we did not know if she was in pain, but just in case).

The PC nurse arranged and approved CHC funding within 24 hours (Mum was self funding) and she remained on this for her last two weeks. They made sure the home allowed us to visit anytime day or night.

It was so much easier dealing with the PC team, with their out of hours contact, as opposed to trying to deal with the GP, if you could even get through!

What I am trying to suggest, is think about asking for your relative to be placed under your local Palliative Care Team as soon as possible. You may not need them for weeks, months, or years, but once your relative starts to deteriorate, they are only a call away and can assist immediately.

I also had a lovely call from Mum’s dedicated nurse after Mum passed, asking if I was OK……

 

[Grannie G]

Thank you @prittlewell

 

[Duggies-girl]

Hi @prittlewell My dad was under palliative care for almost two years. He had alzheimers and oesophageal cancer. His oncology consultant arranged for him to be put on palliative care with the local hospice who used to ring me once a month to see how he was getting on. Dads GP was also involved and was very helpful. I could ring his hospital or the hospice or his GP at any time. His GP also made a number of home visits for minor things including a flu jab.

A lot of people are under the impression that palliative care means end of life and no treatment but this is incorrect.

Being on palliative care means doing the best for the patient by doing anything that may keep them comfortable and causing no harm. It was decided that dad was not suitable for surgery or chemo due to his frail state of health but palliative radiotherapy may be possible if his symptoms worsened. Dad had an oesophageal stent so he would be able to eat which worked wonders, he was also given antibiotics when he had pneumonia and when he needed a blood transfusion he got it. He also received an iron infusion at a later date as it would make him feel better.

Eventually his condition deteriorated and he became unsuitable for radiotherapy, in truth the daily journeys would have been unbearable and probably would have hastened his death. Instead he remained at home until the very end.

I cannot fault his treatment or his hospital team, dad did really well and was very happy and his oncologist said that he was the perfect advert for conservative treatment of the elderly. She also said that he did better than many of her younger patients with the same cancer. He far exceeded his prognosis and he was comfortable throughout. He died a month before his 90th birthday.

 

[prittlewell]

Hi @prittlewell My dad was under palliative care for almost two years. He had alzheimers and oesophageal cancer. His oncology consultant arranged for him to be put on palliative care with the local hospice who used to ring me once a month to see how he was getting on. Dads GP was also involved and was very helpful. I could ring his hospital or the hospice or his GP at any time. His GP also made a number of home visits for minor things including a flu jab.

A lot of people are under the impression that palliative care means end of life and no treatment but this is incorrect.

Being on palliative care means doing the best for the patient by doing anything that may keep them comfortable and causing no harm. It was decided that dad was not suitable for surgery or chemo due to his frail state of health but palliative radiotherapy may be possible if his symptoms worsened. Dad had an oesophageal stent so he would be able to eat which worked wonders, he was also given antibiotics when he had pneumonia and when he needed a blood transfusion he got it. He also received an iron infusion at a later date as it would make him feel better.

Eventually his condition deteriorated and he became unsuitable for radiotherapy, in truth the daily journeys would have been unbearable and probably would have hastened his death. Instead he remained at home until the very end.

I cannot fault his treatment or his hospital team, dad did really well and was very happy and his oncologist said that he was the perfect advert for conservative treatment of the elderly. She also said that he did better than many of her younger patients with the same cancer. He far exceeded his prognosis and he was comfortable throughout. He died a month before his 90th birthday.

My Father had this awful cancer and died in 1986 aged 59, a year after diagnosis. However, dad suffered with indigestion for many many years, and was always taking Milk of Magnesia’. So I think he actually had it a while before being diagnosed.

 

[Duggies-girl]

@prittlewell We only got dad diagnosed when he was unable to keep food down anymore and his doctor sent him for an endoscopy. He had been investigated for weight loss for months but we suspected it was due to the dementia and so did his doctor and I was quite shocked to find dad had cancer. He must have had it for a while. He used to tap his chest a lot after eating but I never connected it because he never complained.

Sorry that your dad had it too and at such a young age.

 

[TNJJ]

My Mother had dementia for 8 years, and due to other health issues, she could no longer manage at home with carers, so she moved into residential care in March 2018.

Almost from day one, despite having both PoA’s, it seemed a continuous fight with her GP and Care home to get information and to input to Mum’s care.

I was fortunate, in that my DIL was a Palliative Care nurse, and knows the system, and also, many of the local GP’s.. She advised me to apply to have Mum put under the care of the Palliative Care team. She knew Mum’s GP and said he would likely object, and will tell you that you can only be transferred to the Palliative team at End of Life. He did, and so did the Care Home………but this is NOT true, you CAN be referred and placed under the Palliative team if you have ANY life limiting illness, even if death is not imminent. Contrary to what your GP may tell you, It is NOT just End of Life.

After a couple of strongly worded emails to the GP, Mum was placed under the care of the Palliative team a year ago when she was in relatively good health, although doubly incontinent, and needing a hoist.

Mum deteriorated, unexpectedly, very quickly in June this year, and I am so glad she was under the Palliative team. They stepped in straight away. Once we knew Mum was likely End of Life, the Palliative team arranged a GP video call and provided the home with all the EoL drugs that may be needed. I had the mobile number of Mum’s personal PC nurse, and Mum was put on pain patches (we did not know if she was in pain, but just in case).

The PC nurse arranged and approved CHC funding within 24 hours (Mum was self funding) and she remained on this for her last two weeks. They made sure the home allowed us to visit anytime day or night.

It was so much easier dealing with the PC team, with their out of hours contact, as opposed to trying to deal with the GP, if you could even get through!

What I am trying to suggest, is think about asking for your relative to be placed under your local Palliative Care Team as soon as possible. You may not need them for weeks, months, or years, but once your relative starts to deteriorate, they are only a call away and can assist immediately.

I also had a lovely call from Mum’s dedicated nurse after Mum passed, asking if I was OK……

Thank you for this. I have had an ongoing battle with dad’s doctor about being on the palliative care teams list. Apparently he is not ready for it. Dad has congestive heart failure kidney disease diabetes etc. He won’t consider putting dad on it. Dad is 88 and getting worse . He is not going to get better..

 

[prittlewell]

Thank you for this. I have had an ongoing battle with dad’s doctor about being on the palliative care teams list. Apparently he is not ready for it. Dad has congestive heart failure kidney disease diabetes etc. He won’t consider putting dad on it. Dad is 88 and getting worse . He is not going to get better..

I would contact the Palliative care team direct. The guidelines for palliative care state it can be implemented at any stage, and not just end of life. I emailed a copy to Mum’s GP and advised it would be a formal complaint if he refused. TBH I think he was quite happy in the end to pass me to them!

 

[TNJJ]

T

I would contact the Palliative care team direct. The guidelines for palliative care state it can be implemented at any stage, and not just end of life. I emailed a copy to Mum’s GP and advised it would be a formal complaint if he refused. TBH I think he was quite happy in the end to pass me to them!Thank you.I never thought of that.

 

[Jale]

Thank you for posting, it is advice like this that is very helpful

 

[DesperateofDevon]

Thank you for posting, it is advice like this that is very helpful

Only by my own experiences & inexperienced have I found out a lot of information . Sadly there doesn’t seem to be any connectivity / communication between agencies