Hi everyone, dad was admitted on Tuesday night as he had been choking on excess saliva for over 9 hours at home, eventually after ringing 111 four times and being cut off and left hanging on for an hour before being told that a doctor would call back within 2 hours I gave up and called 999. An ambulance duly arrived and he was taken to our local hospital where he was taken to A&E. The next morning he had been taken to the Clinical Decisions Unit. They did a swallow test and have informed us that he is totally unable to swallow anything at all , solids, liquids or meds. They tried to insert a nasal gastric tube with no success by which time dad was in distress. He has now been moved to another ward and seems more comfortable but still no swallowing, no food no drink and no meds only liquid paracetamol in a drip. We have been waiting 2-3 months for a CHC assessment and they are dragging their feet somewhat despite dad passing the initial assessment. But still not being allocated a social worker and this is being used as a reason why CHC is not being assessed yet. When was in the Clinical Decisions Unit yesterday they seemed positive about fast tracking the CHC for him but now the sister on his new Ward has told me that fast track is for patients who only have 3 months life expectancy or less - I thought there was something called end of life care for that stage or have I got the wrong end of the stick. Or as I am wondering is he being given the run around? Sorry this is a bit long winded but I would really appreciate any advice. JR61 x
Fast Track CHC/End of Life Care: Hi everyone... - PSP Association
Fast Track CHC/End of Life Care
Hi jr61
Get the hospital social worker involved and they should hurry it up and help even the ward should beable to put a word in
We got our chc while he was in hospital and it was pretty quick
And if your ok with it tell them until care etc is in place he cannot come home and they cannot put him anywhere else but the bed he's in till care is done also get o/t involved and speech and language too
Hope it helps and good luck
Sue x
After Googling this I have found that I think he would qualify as he has entered a 'period of rapid decline in his condition'. His mobility is very poor and his eyes are affected badly now we have the total loss of swallow and he is to be assessed by another neurologist, endocrinologist, nutritionist,OT and Physio. Think they will suggest a PEG, this will help with nutrition and medication but not the salivation issue and he has other health issues which have contraindications for some medications they could use for this issue. He is as yet still continent. JR61 x
Sounds so much like Archie but he has got the peg done and I must admit we are lucky that we have a good package
Regarding the saliva he has regular mouth clean and because he hasn't got a good cough on him he now has a cough assist to help fetch it up
If you go on the psp site go to the section for guide for chc professionals and print it off and give them that as 95% don't know psp
Again good luck
Sue x
Yes I am thinking that a peg may help him now but he had been against one back in March when we asked him his wishes. The ward sister said she had nursed other PSP patients and I got hopeful that she would be a good help but then started talking about Parkinsons and the meds and I could have screamed BUT HE HAS PSP ! JR61 x
Yeah Most are muppets ignorant to psp I always take a folder about it when he goes in
And tell them to read
Sue x
Thanks - that post has really given me a chuckle - I'm going to adopt that approach too.
The front page will of course be titled "Muppets Guide to CHC"
Hi Kevin
I adopt that saying it a lot
Like I tell the home care manager I don't want muppets in who don't listen
It makes me laugh as he bows down to me all the time (fool)
Cause 19hrs in total per day is a lot to loose
Hope you and Liz ok
Sue x
We're good right now... you know how it goes.
We are now recorded as a 'sensitive case' with the current care agency.
I don't know how often I have had to quote CQC standards at agencies.
One agency would regularly turn up anything from one to two hours late or not at all with no response from the 24/7 phone line.
Requesting carers do not come back if they would not listen to Liz's requests and who I tried to school up over a few visits and they could not get it.
Carers who frankly were just too dim to learn about her risks and how to do moving and handling.
Carers with no English beyond a smile and hello.
I don't mind being a 'sensitive case'.
And, for all of that we get on really well with any carer worth their salt.
The current lot, who are superb, are well cared for here. Fresh home made biscuits or similar, on some visits, if they are sitting there will always be an extra portion of home cooked food. I have even started helping them with their travel expenses and Tax, how to get a good deal out of Virgin and doing brief cooking lessons if they particularly like a dish... bread making in a bread maker is popular... and I source good second hand machines for them!
But never, never, demand decent care standards, or like me you will be marked as a 'sensitive case' an get decent care.
I like your style!
Strength to you
Kevin
Hi jr61
Non CHC staff often get it wrong.
As for the CCG refusing to assess because there was no social worker. They are abrogating their duty to assess. Should you or anyone else find yourself in that position simply write to the CCG stating that you were given that response and want your letter recorded as a complaint as well as requiring a formal response to take to your M.P. You might be amazed how quickly they remember their legal duty!
I am sorry you are in such a terrible situation now, with systems complicating and great stress too.
I agree wholeheartedly with Sue, but I would add... They have a duty of care. Do not do their job for them, before you know where you are they will be doing a discharge.
It sounds as if you are nowhere near discharge at the moment. The hospital must first get your Dad stable. Until he is established on a working feeding system he cannot be discharged.
When you get nearer discharge you might want to use phrases like:
"I want a Fast Track Assessment doing as part of a workable discharge plan."
It is not for you to find the Social Worker... The hospital will do that (They actually have hospital discharge teams including Social Workers.) However you need the fastrack assessment to become a part of that process to secure proper services after discharge.
Your Dad has a legal right to a Fast Track Assessment prior to the discharge planning being completed.
I wish you the best at this awful time.
Kevin
Thank you so much for your brilliant response Kevin_1. I will learn it by heart and quote it chapter and verse! Your knowledge is invaluable to everyone on this site and your efforts are very much appreciated JR61 x
No worries
Keep coming back... there are a quite a few folk here who are good at this. Between us we will try to get you there.
Warmly
Kevin
Thanks Kevin appreciate that
Please, please, please, state as much as you can for the unpredictability and complexity of PSP that is how we got funding. Push as hard as you can. Jx
Many thanks for your support Zeebrrdee. I certainly will, complex, progressive and unpredictable has become a mantra! Unfortunately, this is the second time this year I have had to deal with an elderly parent in hospital and the last time they discharged my mum too soon (her condition did not involve wrangling about CHC fortunately though) and she was my father's primary carer at the time - she is 82 has scoliosis , arthritis and was recovering from emergency bowel surgery. I will not allow them to be bitten twice! JR61 x
That is absolutely dreadful I am so sorry this has been a really bad time for you. It is easy to say but don't give up everyone on this site has tons of information and their support is so important to sufferers and carers. Jx
News to me that fast track was for people with a short time to live? Disgraceful, I thought I heard that you don't need a social worker anymore to get CHC? Wishing you all the luck we are all right behind you xxxxx
Many thanks Yvonneandgeorge and to everyone for all your help and support JR61x
Hi Jr. What a disgraceful way to treat anyone. Chc is for health related issues that need to be addressed now. Ask for a palliative care nurse or find one in your nearest hospice. They can fast track. Thats what happened to us even though ger has a PEG because he can't eat or drink. His mouth is closed now but still chokes on saliva. Don't listen to anyone telling you your dad can't have it. You fight for his rights.
Good luck and god bless.
Thanks Duffers he has been seen by the Hospice palliative care team only last week as he was having issues with excess salivation and intermittent swallowing issues but unfortunately his swallowing has stopped
Completely and suddenly so now considering his limited options and will be going to see them today with my new found knowledge of the CHC fast track etc to back me up 😉🤞JR61 x
you have you tell your docter that you wont this i did he stayed at home and everything was put in place they have to do this take care and my prayers are with you on this journy
My Aunt also has the problem with saliva I had her doc write a prescription for a suction machine and it helps a lot a peg tub sound like a good idea we had one put in if you are confused or scared as we were at first go to you tube a watch a video on peg tube it help us a lot to understand because my Aunt thought she would never be able to put food in her mouth and that is not the truth I'm glad and so is she that we did she gets all her nutrition and meds through it and she still gets to have soft stuff and I do not have to worrie about her not getting enough protine and stuff. The suction machine she likes to do her self and it does wonders. Ours was ok but I needed more stronger suction so I went and bought a little shop vac, stuck the hose in and tapped it down so no air was getting out and it works great. I have an invention for people who have to get the peg tube but cant tell about it till I get it pat. Its going to help a lot.
Never thought of U tube to help explain it all to dad and mum thanks for the tip. What a great idea hope you get your patent! JR61 x
Can you tell me about the suction machine? Did you get it on the NHS? Thanks M
The suction Machine is like the one a dintiest uses when sucking saliva you of your mouth when he is working on your teeth but its smaller and portable also like the one they use in the hospital usally behind bed. It helps a great deal with her saliva because its ropey and sticky llike glue. I asked her doctor to write a prescription for it and they sent it to a medical supply store and we had it with in a few days. Any thing that I have needed as long as her doc writes a prescription Medicaid will cover most everything. Even her electric scooter and hospital bed ramp for wheel chair . If you need something just always remember to get a prescription.
Lots of hugs Kryste
My Mum didn't have a social worker involved in her successful application for CHC. What she did have was support from local Hospice OT. Your local Hospice will be a great help for n so many ways
Hi we are in a very similar position! My lovely Mum has been in hospital for 12 days with swallowing a and choking issues. She has CBD and is on a neuro ward with ENT and respiratory consultants on board. Video fluoroscopy tests (2nd one) xrays oxygen overnight tests etc. We were turned down for CHC in April this year. My Mum is totally incontinent, can barely move or communicate, or eat much, her cognition is failing, and pressure sores imminent. She is on anticoagulants, colevodopa etc etc. The doctors are saying we need to decide this week on peg feeding. I'm thinking of asking for fast track CHC this week. We have a social worker and social services haven't been able to find carers to manage her substantial care plan so we have had NHS carers for the last 3 months. If this isn't enough evidence for CHC I don't know what is! Let us know how you get on with fast track and I'll do the same!
Good luck to us both lol!
Mx
Dad is still in hospital and hasn't had anything to eat since Tuesday. He has had a drip intermittently, as he keeps pulling out the cannula and he has pulled out the NGT several times even before they managed to use it to feed or medicate him. He is black and blue from his efforts! They put mittens on to stop him and he has removed them with his teeth! I rang his community neuro matron and she now says that she has sent all the paperwork off now that he is in the hospital. So I am now satisfied that she now appears to have made the application even though the ward sister seems to be misinformed over qualifying requirements. Fingers crossed he will be granted CHC and someone helps us to work out who and what we need to keep dad comfortable before he is hopefully discharged to a care home or his own home, although I seriously doubt that this can be achieved given my mother's failing health. However, things are not looking great for him ATM if he continues to thwart the hospitals efforts to help him. JR61 x
Hi JR61
My Mother is still in hospital too. I have asked for CHC assessment and we are having the DST meeting on Wednesday. We are having discussions on PEG feeding as her swallowing reflex is now poor. We have been offered a mini lift (like an electric hoist) to transfer Mum. However my Father is refusing to have it in the house. It therefore seems that we have reached the point of finding a nursing home. I don't understand why he is refusing it, but i think he is losing the plot to be honest. Is your Dad still in hospital? any news on CHC?
mx
Hi, Martina, yes dad is still in the hospital he is deteriorating badly but has managed to regain a little swallow so he is now on purée thickened drinks and liquid meds and patches. I have been so busy that there has been no time for an update on his condition. Sorry. We've had brilliant news that he has been fast tracked for CHC and has been granted it!! No fuss at all I rang the Community Neuro Matron and told her he had been admitted with swallowing and choking difficulties and he was falling all the time and she rang a couple of days later and said she had submitted the documentation necessary and a few days later rang to say it was all sorted! Unbelievable after the conversation at the hospital! However he is really bad now but the hospital want him out so now looking for nursing homes as we are unable to do it at home due to the house being unsuitable and mum being 82. We have been to 3 so far 1 was like a 5 star hotel and is my preferred option. Obviously. 1 was just about ok but I would feel guilty till the end of time. And the 3rd was like something out of a Dickens novel describing Bedlam and he will go there over my dead body. So very mixed news I'm afraid but that is PSP to a T! Hope all is well with you and yours keep plodding on. JR61 xxxx
Hi JR61 I am so glad you got the funding but sorry to hear about your Dad deteriorating. We are having a home assessment as I don't think my parents house is suitable either. It would be if my Dad would allow her hospital bed downstairs and allowed the electric minilift in but he is saying absolutely no way. We have no alternative but to find a nursing home too. That and the CHC meeting on Wednesday as well as work and looking after my family its all getting too much! Just off to the hospital now..good luck with finding a nursing home and let me know how it goes?
mx
Dad has the concrete thinking too nothing must change and routines once started cannot be altered. He has refused peg and NGT and drips etc so now he has a bit of swallow he is being risk fed. Their decision making is altered by the changes in cognition I'm afraid and they don't assess risk and benefit x
Hi everyone, this is turning into an emotional rollercoaster, just been to visiting at the hospital fully expecting dad to be asleep and unresponsive again but no, miraculously he was sitting in a chair by his bed in clean PJs having eaten a puréed lunch which he said was 'frogspawn' washed down with 'wallpaper paste' he was even having a slow and quiet conversation with sparks of mischief and a smile! He does however think he's been on an outing into the hospital grounds, which he hasn't but today has turned out to be much better than we were expecting - totally amazing! I know it won't last but was lovely whilst it did. JR61 xxxx
Great news! Make the most of it! My Mum also looking better...she was able to communicate much better than she has in months! She was also under an illusion though..said the doctor was coming at 2pm to tell her she was going home. When I asked the nurse she said there is no such arrangement and mum is imagining it..oh dear lol! Yes it is an emotional rollercoaster isn't it?!
Hi Martina, yes I know exactly where you are coming from, there is no rhyme nor reason to any of this, it is pure torture for all concerned. Just hang in there, keep pressing for CHC as everyone on this site advises, emphasise the unpredictability and progressive nature and keep records of what is happening , e.g. (and not exclusively) - falls/mobility, swallowing/choking/ feeding/ communication, eyesight, incontinence, medication/ infection monitoring (this is not a comprehensive list, just stuff I have thought of off the top of my head) and do not forget any issues you have with your own health, I believe the patient should be assessed as if you are not there to provide back up, so should be looked at as if they lived alone, correct me if I am wrong but this is the impression I have been given. Much of this I understand comes under the heading of nursing and not just social care and as such should be provided free, at the point of contact, by the NHS. I'm sure others on the site have a much better understanding of this and will be able to assist if I have misunderstood. There should be a list of diseases that automatically qualify for CHC, in a so called civilised society, as all of this paperwork, assessments and admin nonsense is costing each and every one of us an absolute fortune in taxes, we all know the conditions that should be accepted without question, so why is this happening in this day and age???? The thing I am having nightmares about is what happens to the poor patients who have no one to be their advocate? They are the ones whose wealth is plundered and are suffering in inadequate care such as the patients I witnessed the other day in a modern 'Bedlam' - that home had a GOOD rating by the CQC - I kid you not! JR61xxxx
Sorry, just realised I have used my husband's ID to send the last post - very tired but full of righteous anger! take care JR61 x
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