I had a meeting with the staff nurse today she said I can only apply for continuous care fund if Geoff has about 6 weeks to live which she said he is not at that stage yet I asked how can you determine who will only live 6 weeks I said as Geoff was refused a peg feed his illness is deemed terminal I also said the rules changed in march she said Geoff needs something called chc I think its critical health care so I tried to stick to my guns and said politely please look at ccf she said she would talk to the consultant tomorrow but she was not well pleased the doctor then came to see me to ask if Geoff has more problems should they not recusitate I despair I queried about his dhiarea because no one had mentioned it they told me he was refusing food he cant feed himself so if he refuses they wont feed him as it ts classed as force feeding so now I know why no dhiarea I am taking hot food in flask tomorrow ill feed him myself he really does get better care at home I am going to ring pals back tomorrow to see if I can get some help
confused : I had a meeting with the staff... - PSP Association
confused
When Chris was in hospital they suggested a PEG. I said we were both agreed no. So he was on a purreed diet and that was enough for them to see him as terminal. I understood that to mean 12 weeks as they said that was the initial fast track but was reassured not to worry, it could be extended. He couldn't move, speak much or feed himself.
He was definitely happier at home with me but I wouldn't have been able to manage without help as he couldn't move.
I hope they will be more proactive for you.
Big hug from Jean x
*** I think you are getting a CHC Fast Track Assessment now? Please confirm. I will leave this post up anyway ***
Hi Doreen
They are completely wrong.
This "so many weeks to live" is a fallacy.
The only criteria for CHC are having a qualifying illness and meeting the scores. How else would we be receiving it for three, going on four years?
She will not go to the National Framework... She simply does not have time and it's not her field.
Besides, it's not her call whether Geoff is eligible or not. It is for the CCG to decide.
Now is the time to go back to PALS. Tell them you have consulted a specialist Advocate in CHC who has told you that you have the right to have an assessment for CHC and the nurse simply does not know the law. I would tell them you will make a formal complaint if you do not get your legal right to this assessment. Formal complaints are recorded and form part of that hospitals assessment. They are taken very seriously.
I am styling myself as an advocate here just so that you have an easy way of saying you have access to legal advice and so you know you are correct. (insert inflated ego here 
)
I could give you links for all of this info, but you don't really need them.
For your own info. though.
caretobedifferent.co.uk/17-...
Click on this - see No. 15
She is wrong.
In looking up this info I came across an article which says that many Hospitals have adopted a policy of discouraging applications for CHC.
Stick to your gun's, tell them you have a specialist advocate and that you want them to abide by the regulations. Or something like that.
You have a right, by law, to seek an assessment for Continuing Healthcare at any time.
Best to you.
Kevin
Hi Doreen
I assume this post has been corrected by the one here?
healthunlocked.com/psp/post...
And that you are now getting fast track?
I will leave my other reply up in case it helps others.
Please confirm that you are getting a Fast Track Assessment.
Best to You and Geoff
PS - Get some sleep - you have so earned it - You are a great carer - Be proud! 
Hi Kevin just saying a very big thank you for all your advice. I am Doreen and Geoff’s daughter in law Michelle 🙂. It’s really heartbreaking for all the family at the moment and I feel for Doreen and also feel for Geoff! Poor Doreen is very emotional and feels that everyone is working against her and trying to take Geoff away. I am trying to convince her that what in fact they are trying to do is make life easier, safer and more comfortable for both Geoff and herself. Upto Geoff being rushed in on Friday Doreen was caring for him solely and doing an amazing job! Doreen has been lifting and moving Geoff un aided. She gets him up and out of bed on her own, he is showered shaved and sat comfortably ready for his breakfast every morning. She regularly has to shower Geoff several times a day due to his diarrea. This is morning and night! Geoff said to Doreen in his early stages that he didn’t want to go into a home but to remain at home with just the two of them. If only it was that easy! Forgetting the problems with who agrees to what etc regarding the funding Doreen feels that having being observed in the hospital how she gets Geoff out of bed occupational health have said it’s not safe. She feels they are saying that she isn’t capable. I have tried to say they are looking into her safety too. If she hurt herself, pulled her back, fell with Geoff etc and was unfit to manoeuvre Geoff what would happen? She would have to let Geoff go into care until she recovered herself. Doreen is three times stronger than me and I am nearing 50 and Doreen is in her 70s! I cant believe she has managed so long. I have been to see Geoff every night whilst in hospital. He is fed up bless him. He doesn’t want to be there. The house has been measured up for hoists now and will take about four weeks. My hubby has been to see his mum tonight and I believe that they are going to keep Geoff in a while longer. Then put him into respite care for a couple of weeks until the house is ready. We are relieved that these hoists will make life safer and easier now for both of them. If we can get some care sorted too life will be a little less stressful! The chc funding is the next obstacle! I wish I could help more and feel useless. Unfortunately I can’t go with Doreen tomorrow due to work as I want to try and help her! Aggghhh this disease is terrible! After all that lol thank you again and hopefully Doreen will get somewhere tomorrow with your advice and info sending a big hug and kiss x
How good to read how supportive you all are. I have been in Doreens' position and I know how much that matters. These are the things that matter in the long run.
Thinking of you all. love from Jean xx
Hi Michelle
You clearly have a good understanding of all of the processes and you all sound wonderfully loving and supportive. Despite the difficulty of the situation you are all in you post was heart warming to read.
This disease is awful. It affects everyone in the family so much.
I am a little confused. Doreen posted last night that Geoff was being referred for Fast Track CHC. If that is the case nothing more needs to be done at the moment. Fast Track is just another route into CHC funding. If that is the case there is no need to see PALS.
Don't forget that Social Services 'lend' equipment. My experience has been that they buy in good quality stuff and most of what we were lent was new. This includes wheelchairs, commodes, everything. They will also check the house and put rails in and so forth, but it sounds like you have already had an OT in to do that.
Hugs to you too - you sound like you are doing a great job despite going to work as well.
Warmly
Kevin
xx
PS - The care your Mum in law has been putting is is astonishing! Strength to her.
thanks kevin I will ring pals today before I go to see Geoff I am also taking him some food I will feed him myself I will let you know how I get on you ought to work as devils advocate for the psp association as I'm sure you have been sent to this earth for a reason how do you cope with everyone elses problems when you have enough of your own I love my family more than they will ever know but I loved Geoff first your wife is very lucky doreen
Hi Doreen
If they have made a referral for Fast Track then you don't need to do anything more. Fast Track is a quick route toward Continuing Health Care.
Your going through a lot right now. Please pace yourself and take care of yourself too.
Warmly
Kevin
Hi Kevin I will try and speak to Doreen this morning to confirm / understand who is who and doing what! It does get a little confusing and I think we need to contact the OT who has sorted out the hoists and chair etc to ensure that this is fast track then we will know that CHC will hopefully follow. My hubby went to see Doreen last night for a chat about various things DNR etc. Paul is not a man of many words lol but has tried to diplomatically say if it was him in his dads position he wouldn’t want to be! I think Doreen understands and I whole heartedly feel the despair before the inevitable happens. I am very lucky that I have both of my parents and both of my in laws and would love to think it would stay that way forever but know in reality life is not that generous ! However selfish this would be I also don’t want to see suffering. Oh if only I had a magic wand! Although Geoff is in hospital it’s good to think Doreen is not stripping beds several times a day, can visit the allotment without feeling guilty and catch up with the other guys there ( I have told Geoff I will be keeping a watchful eye on her as it’s all men!! ) the break will do her the world of good and it’s because Geoff was rushed in she can’t feel guilty that she hasn’t got him at home. It’s also going to hopefully push things on in the funding and equipment side.
Well I should be getting some work done!
Thank you Kevin once again xx
Hi Michelle
Given the extent of care your Mum in law has been doing she is as strong as an ox emotionally and physically. I think you should go to the allotment with her, to protect them men from any foolishness they might make.
This illness is so hard with regard to care.
Wishing you all, the best
Warmly
Kevin
xx
hi kevin I'm fighting again they said they will put in a referral for chc but flatly refused to fast track it they still insist you only have to have appox 6 weeks left she also said they are running short of funds so its hard to get I said it is not her desicition to make its up to the ccg anyway Geoff has gone down hill again his pneumonia is back his temp is sky high and the xray showed he had a shadow on his left lung and the right lung and asophegus is stretched they are puzzled as to what is happening so they told me will be there for a while yet I'm beginning to feel like I cant keep going with all hassle its bad enough watching Geoff I will keep you posted regards doreen
Hugs to you Doreen and well done
As you say it is not for them to decide whether it should be fast track and that the CCG will make that call.
As for running out of money - that is not your issue. Would they refuse surgery because they were running out of money? No.
She does sound like a very difficult lady!!!
I would give it until Tuesday and then telephone the CCG to ask if they have received a referral. Given that it is only a phone call or email that is plenty of time. If they say no then ask them what you should do as you were promised a referral by the ward.
Anyway - you have done well!
Best to you all
Kevin
thanks kevin would like to say sorry if I appear thick how do I find out how to contact ccg without going through the ward Geoff is in a medically elderly ward most of the patients have dementia its heartbreaking to watch and the staff work so hard but because he is quiet and doesn't cause problems I wonder about what I can do to help get him home in 4 years he never had a sore bottom today it looks very red the doctor came to see us and said his pneumonia has returned our daughter and daughter in law called me back to hospital last night as he was fitting the doctor suggested it was the parkinsons I said his eyes have never rolled except when the paramedic told me he was fitting she said it had returned because of the way he is fed my reply was you have been feeding him for the last 7 days and I said when admitted I told them soft diet anyway today she told us he can be fed normally but it will kill him or he should have all food liquidised and drinks thickened it was our choice I said its a no brainer then she also said he will get to the point of no return and he would not be recucatated as his quality of life is poor like I need to be told I did talk to our children and they agreed I feel so tired at the moment I think its stress as I cant sleep and I had to pull my knitting back five times as I kept doing it wrong not at all like me maybe I need some gallows to sit at to knit don't you get fed up of all the moaning I just want to give some good news for a change by the way there was a message on my phone to ring dolphin on Tuesday they want to fit the hoists urgently so that's a start yippee once again kevin your a star love to all doreen
Oh, Doreen. I am so sorry that you are having this stress.
Say you want him home to be cared for properly, even if he is dying. You will then be in charge of his eating and general care.
We're all rooting for you.
love, Jean xx
Hi
Good news on the hoists.
That ward doesn't sound very confidence building.
If you private message me the name of the Trust I will pm you the telephone number.
And, you are not being 'thick' at all. This is all new to you.
Your tenacity is doing you proud.
Hugs to you
Kevin
Oh, I'm so sorry, Doreen. It makes me so angry that you have this going on just when you need support. How long does she think he has ? Its not an exact science and he sounds in need.
You are a warrior, Doreen.
Big hug from Jean xx
I don't know how she has managed that all on her own with no carers to help. Does he attend the hospice day service as they were of great support to both Ben and myself and helped to get the CHC funding to pay for extra care and respite. The Speech and Laguage Therapist and Parkinson's Nurse also supported the application and Ben was awarded it first time almost a year ago. We had a nurse who tried to convince us that Ben wasn't eligible as it was only awarded for end of life, Not True. I hope your Mum in Law can get more support, she won't be able to do this on her own.
Sending my warmest wishes
Love Kate xxx
Hi Katie
No Geoff hasn’t attended any day centres etc. He expressed to Doreen when first diagnosed he want to be at home just the two of them. As time goes on I think it’s harder to introduce these things! Doreen has / does everything for Geoff with no help at the moment. She is a very determined strong lady but we all fear her health to. Hopefully this will be the opportunity to get hoists and care in place to make life a little easier for them both.
It’s so wonderful to have such thoughtful and caring people in one place offering support and help in such a loving manner.
Sending warm wishes, happiness and comfort to all who have to deal with this terrible illness xx
If Geoff is incontinent, as Chris was, although I resisted help it was wonderful when two carers came in three times a day to do the business. They were able to move him and bathe him so efficiently. They were very loving with him. It meant I only had to deal with the washing and was able to focus on feeding him and "grooming ".
At different stages of PSP the stress changes but is still immense.
I would recommend you consider carers.
love, Jean xx
Bless your heart dear lady. There is no comparison for good home loving care anyplace. I feel sorry for you trying to stand up to sometimes know it all health care providers. The doctor has prescribed lomotil 2.5 mg for Genes diarrhea. It has not stopped it but slows the movements down and given me a break today. It does make him even more tired but I got to make homemade bread with chicken and homemade noodles today. Yum! Good luck in finding help for Geoff. Nancy
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