End of Life CHC funding

[Anne19]

Dear @Tilly13 so sorry to hear you are at a similar stage with your dad. Thank you for posting your questions too as it all helps. Sending a big hug to you x

 

[Anne19]

Dear @donkeygirl it is horrible that you are having to watch your mum going through this and like you say it can feel very isolating at times and this forum is great as you don’t feel so alone with it all. Thank you for your comment although I hate that anyone else is going through this it’s nice to feel understood.
Take care x

 

[Anne19]

Dear @JackieG1 so sorry to hear of your recent loss of your mum. We are just how you have been - anxious all the time and dreading it if the phone rings but also wanting this to be over for her.
Like you say we need to remember all the happy times and there were many of them throughout my mums life.
Thank you so much for your kind words and look after yourself x

 

[luggy]

Hi @Anne19 you've already had some sound advice from other members, so I won't repeat that. My mum was Fast Tracked last August and the application form was completed by the District Nurse, with some input from mum's GP. It was accepted and approved by the ICB, but it did take about 8 days for it to be set in place, instead of the recommended 48 hours. Mum was assigned a Fast Track case manager who was a registered nurse. Initially, I was told that it would be preferable if mum was moved from her residential care home into a nursing home where they thought her care needs would be dealt with better. At the time, I felt that mum would be better off staying where she was as the carer's knew mum very well. The ICB agreed but, after a few weeks, mum had to move anyway due to the closure of the care home and she is now in a nursing home.

During the Fast Track period, I received a monthly phone call from mum's case manager to check that I was still happy with the care mum was receiving.

After 3 months, the ICB will conduct a review of your mum's needs with a view to conducting a full CHC assessment where they will be pushing to withdraw the funding. In this eventuality, it would be wise to keep yourself fully informed with regards to your mum's care by checking care home records, GP records etc. Obtain copies if you can. Make notes of any conversations you have with care/medical staff.

Good luck and I hope it all goes smoothly for you and your mum.

 

[Anne19]

Hi @luggy thank you so much for your informative reply. Did you find it difficult to get the District Nurse to agree to do the Fast Track application?
I have spoken to the Practice Nurse at the surgery today - she sees my mum once a week on her rounds to the care home. I asked her about the process of applying for CHC funding for mum given how quickly she is deteriorating and the fact that she is now classed as end of life. The Nurse was very nice but I felt she was trying to put me off a bit - she said that it is rare that someone in residential care gets fast tracked - it is usually for someone still living at home. She said she could do a check list to see if mum would then progress to a full assessment. I know from reading that this can take many months and I honestly can’t see mum being around for that long (but I could be wrong there).
it’s hard to know what to do as if the nurse from the surgery doesn’t agree that mum can be fast tracked what do we do then? You do feel that there are always blocks put in front of you at every turn - especially when it boils down to money and budgets!

 

[luggy]

Hi @Anne19 it's so frustrating and disappointing when these obstacles are encountered, but not uncommon. It seems that many clinicians are just not familiar with the CHC process.

My circumstances were that my mum had stopped eating (see note below*), and it would appear that this is often the yardstick applied by clinicians when determining whether someone is 'actively dying', or in other words, expected to die within short weeks. My mum's GP made the prognosis that mum was imminently EOL, at which point I raised the subject of Fast Track. The GP agreed that, in his opinion, mum was eligible and he asked the District Nurse to complete the application. I was lucky that this particular District Nurse seemed to have a good knowledge of the process and she submitted a very comprehensive application.

Have you come across the National Framework for NHS CHC? This is the official guidance for everything concerning CHC and paragraphs 240 to 269 cover the Fast Track process. I would advise that you try and get a copy for reference, if you haven't done so already. I'm afraid that your District Nurse is incorrect in her explanation that Fast Track is usually for those living at home - anyone can become eligible for FT as long as they meet the criteria, no matter where they reside.

In your original post, you mentioned that your mum's GP had prescribed EOL medication, otherwise known as 'anticipatory' or 'just in case' medication. This tends to suggest that this particular GP has arrived at the prognosis that your mum is 'rapidly deteriorating' and 'may be entering a terminal phase' (see National Framework para. 251). If I were you, I would try and speak to this particular GP about the prognosis and tell him/her that your mum needs to be Fast Tracked.

I hope that helps. Let us know how you get on.

*Re. not eating - this is not the only reason why someone should be Fast Tracked, but it indicates that the decline is gathering pace. The National Framework also states that 'strict time limits that base eligibility on a specified expected length of life remaining should not be imposed'.

 

[Duggies-girl]

Dad got CHC fast tracked at end of life, he had dementia and cancer and we got a carer twice a day to get dad out of bed and then back to bed. It was helpful but this was only for the last couple of weeks of his life. He was at home with me caring for him, the hospice arranged it.

 

[Dave63]

@Anne19, a couple of links to the information @luggy mentioned.

The Fast Track Pathway Tool is used by clinicians and details the 'when and who' the process should be used for. Paragraph 9 to 15 is the bit your district nurse is may be not knowledgable about.

https://assets.publishing.service.gov.uk/media/62fd04148fa8f504bd845834/Fast-Track-Pathway-Tool-for-NHS-Continuing-Healthcare-guidance.pdf

The National Framework is the guidance for the CHC process as a whole (both regular and fast track) and therefore covers every aspect of the process.

https://assets.publishing.service.gov.uk/media/64b0f7cdc033c100108062f9/National-Framework-for-NHS-Continuing-Healthcare-and-NHS-funded-Nursing-Care_July-2022-revised_corrected-July-2023.pdf

 

[Anne19]

Hi @luggy and @Dave63 Thank you both so much for your help and I have had a good read of the National Framework Guidance. I do feel that the nurse I spoke with is not aware of this so I am going to put my request in writing to her so that I have a record rather than just speaking to her over the phone.
I think, like your mum @luggy, it’s the fact that my mum is barely eating and drinking that is making her condition rapidly deteriorate.
The GP that prescribed the end of life medication was an out of hours GP that came in the middle of the night to reinsert mums catheter, so I might be best speaking to her GP maybe.
You are all so helpful and just to be pointed in the right direction gives me a good starting point for my battle!!
I shall let you know how it goes and if we are successful 🤞🏻 x

 

[Anne19]

Dad got CHC fast tracked at end of life, he had dementia and cancer and we got a carer twice a day to get dad out of bed and then back to bed. It was helpful but this was only for the last couple of weeks of his life. He was at home with me caring for him, the hospice arranged it.

Hi @Duggies-girl - That must have been a bit of a help in those last few weeks but I bet by that point you were exhausted. Im sorry you have lost your dad and I do hope you have lots of happy memories of him x

 

[Duggies-girl]

Hi @Duggies-girl - That must have been a bit of a help in those last few weeks but I bet by that point you were exhausted. Im sorry you have lost your dad and I do hope you have lots of happy memories of him x

Thank you for that @Anne19 , I have lovely memories. I am sorry that your mum is at this stage and I hope that you get the outcome that you want.

I am amazed at how some people hang on like they do, they must get some internal strength from somewhere.

 

[Sterlingtimes]

I did not even know about CHC when the process started. My mother was in a hospital setting. I discussed my mother's condition and my own condition (leukaemia), making caring stressful and difficult. I could not have had more sympathy from the NHS, and everything was completed in a relatively few days. I worry a little about the 3-month review, but my mother's needs are unchanging given that she is completely bedbound.

 

[Anne19]

I did not even know about CHC when the process started. My mother was in a hospital setting. I discussed my mother's condition and my own condition (leukaemia), making caring stressful and difficult. I could not have had more sympathy from the NHS, and everything was completed in a relatively few days. I worry a little about the 3-month review, but my mother's needs are unchanging given that she is completely bedbound.

Hi @Sterlingtimes I think so many people have never even heard of CHC Funding. It’s not wildly publicised . I’m so glad you got everything put in place in such a short space of time and hopefully the three month review will mean that things stay as they currently are. x

 

[Sterlingtimes]

Hi @Sterlingtimes I think so many people have never even heard of CHC Funding. It’s not wildly publicised . I’m so glad you got everything put in place in such a short space of time and hopefully the three month review will mean that things stay as they currently are. x

Thank you, Annie. Given the difficulties others are having, I suspect that obtaining CHC from a hospital is easier. Yes, it is a bit of a secret.

 

[donkeygirl]

My own mother very recently passed away and I understand completely how you are feeling. Those last few months were tortuous watching her decline. Like so many others, she stopped eating, surviving only on sips of milk. She's stopped speaking, didn't interact, but I knew she'd could hear us. She may not always have been able to process what we were saying but when we sang to her favourite songs her lips would move. Who knows what goes on in the dementia brain!!
Like you, the stress was with my sister and I 24/7. Every phone call was potentially bad news. No chance of ever switching our phones off and the anxiety was constant.
I can only say that it will eventually come to an end and if you are like us, we wanted it to be over. Our lovely mother as we knew her had long slipped out of the door before her body gave up. We sat with her throughout, but like you, like everyone reading this, we loved her and always tried to do the best for her.
Instead of dreading her death, treat yourself with kindness, don't fight back your emotions and be grateful for the life she lived.
Try to remember her as she was before dementia became part of your lives. I'm sure she had many happy years before this awful condition came along.
Thinking of all of you out there walking this path.xx

My Mum finally got her peace today.
Like a lot of us full of guilt wishing this long journey was over.
After being ill at Xmas and not really eating/drinking regularly since then she passed away very quietly today.
Like others I have watched her going downhill and then rallying again but this time no. I had to move her to a nursing home in May and perhaps that was the last straw. Guilt again on my part but she needed the care.
This awful disease takes away our loved ones slowly if unlucky or sometimes quicker.
My son is in Ireland and told me the story of being "away with the fairies"
The Irish say the fairies take them to a beautiful place and leave what we see behind. A lovely thought that our .over ones go somewhere to have a wonderful time!
As so many people say it is not their relative they see.
You are all so brave and take joy from moments of fun and recognition.
They will stay with us and the memories of life before this disease took over.
Wishing you all strength in the days to come.

 

[Anne19]

Dear @donkeygirl so sorry about the loss of your mum. I am sure you have been on a long and awful journey but at last your mum is now at peace and hopefully with the fairies. Hang on to your lovely memories and try to let go of the guilt - you have been and we all are, just doing the best we can under circumstances that none of us wished for. Take care - sending lots of love and a big hug xx

 

[Tilly13]

Good Morning @donkeygirl
Sending you love and sincere condolences x