At Last

We had our CHC assessment yesterday . It was done by a nurse sent out by CHC themselves - new system . Well we scored two "severes " several " highs" and a few "moderates" and she said she would have no hesitation in recommending we received funding . It still has to go to the verification panel but she said that if she had to present or offer more information she would NOT be changing her mind .So hopefully it will all go through . Phew !

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  • Oh I do hope so Georgepa.



  • Wow about time George πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰πŸŽ‰ with a few of these 🍷🍷🍷🍷🍷

  • Good luck Georgepa, I do hope you get it, it's worth fighting for but its so annoying that you even have to fight for it, absolutely disgusting under the circumstances!

    Love and big hugs....Pat xx

  • How's Keith, Pat?

    Lots of love


  • He's not great Heady, OT has given us a standing hoist as he's so rigid, he's forever peeing in his clothes and all over the floor, he seems completely oblivious to how this is affecting me, I don't think I can cope with this awful situation much longer, I just don't know what to do for the best!

    How are you and Steve? This disease is completely s---t!

    Lots of love....Pat xx

  • Pat my heart goes out to you get the district nurses in a n d make them sort it , it is possible .

  • 😘😘😘 Thank you Georgepa! xx

  • Nothing to thank me for I think you are amazing the way you keep going .Don't give up you are stronger than you think and yes you are right this illness is totally s..t

  • Like Georgepa has said, it can be sorted. Ask about catethers. They really are life changing. Like you, life is s..t! S is really struggling to eat now. Asked if he was ready for a Peg, but said No, although he has agreed to a DNR today. Don't know what is going on, but something is, illness or mental? Who knows! Life is going to have to change yet again, I can't cope with how things are. Jane from PSPA, phoned today, caught me in floods of tears, so is making calls to tell various people how I feel. Whether it makes any difference.........

    Lots of love


  • I'm seriously thinking about Keith going into a home, while I'm writing this Im waiting for him to finish in the toilet! He won't keep a catheter in he just keeps pulling it out and making himself sore! Twice today I've had to strip his clothes off then clear up the mess on the floor, I'm so tired of my life now, it's absolute rubbish and the worst thing is he doesn't even seem to care! I don't have anything to look forward to apart from respite breaks, at least I've found out today that the cost has been fully funded! I sometimes wish I wouldn't wake up in the morning, how pathetic is that, slowly but surely I'm turning into a self pitying wreck πŸ˜₯

    Sorry I'm rambling again, this is so unfair on everyone involved and I detest it!....xx

  • Don't run yourself down every one of us has tipping point Remember you have a right to a life just as much as the next person .Maybe it is what you have to do to retain your own sanity there would be no blame or shame in that .Maybe a happier you visiting would be a better solution than a very unhappy you trying to cope against the odds .

  • I know that makes sense Georgepa, but it's so hard to make the decision isn't it? I'm just not strong enough to deal with the things that are happening now and I'm frightened of what may happen next....xx

  • I am a fine one to talk - haven't even managed to fix up any respite care yet .All mouth and no trousers ,full of advice but hopeless at taking it ,ask Heady .

    But you will find a way -is there anyone who could talk to Keith .I think if the situation was reversed and someone told me I was driving my wife into the ground I might try to think what she needed. Mind you I suppose it depends on how this terrible illness has affected his mind. V wouldn't consider my needs as her mind can't work like that anymore in fact she can't see why I am tired and grumpy. I don't know but is there anyway one could go into a home fulltime but come out for short breaks at home.I guess after a while one would settle in to the routine become institutionalised and then not want to come home -just a thought .

  • That soundslike a good idea George, if I do decide its for the best I'll certainly suggest that, I don't think for a minutethey wouldn't object to that!

    I'll sleep on it and see how I feel in the morning....xx

  • Pat, you and me both!!! I am in EXACTLY the same place. So know you are not alone. Somehow, we will survive this, just don't know how!!!!!!!!!!

    Sending big hug and lots of love


  • Heady I feel terrible now, I've just asked Keith how he would feel about going into the nursing home permanentlyand he said "devastated" and a big tear rolled down his cheek, it's so heartbreaking! πŸ˜₯xx

  • Oh, how awful for you both.

    I know I will find it hard when the time comes for Chris but I understand absolutely the anger and despair at the complete lack of understanding they show. Its so alien to the Chris I know.

    Just want to walk away.

    love and a big cuddle, Jean x

  • I KNOW how you feel... Hugh hugs x

  • Please do as George say's , you can't continue on your own. Thinking of you

    Flicka x

  • Pat you should be getting pull up padded pants from the ot team

  • Thanks Barbara, yes they're apparently on the way! xx


  • Hey shahsha! How are you doing? Are you in Wales now?


  • Christmas in Wales...should be a story there...I'll keep my fingers crossed for you, Sharon.

    And how are you doing otherwise?


  • Good luck George, first positive step sorted. Nurse should be supportive at the CHC meeting but try to get there if you can.

    Well done best wishes Tim

  • Not a meeting I am allowed to attend but as it was their own nurse who did the assessment she gave me the impression that it was more of a formality as the social services representative didn't turn up for the assessment but has to be there for the panel they say ! They failed to show at the appeal panel we went to so who knows .

  • Good news at last! Doesn't it make a world of difference to have someone who actually "sees" you and understands something of what you are living with?

  • Yes she actually spent all of two minutes with V who was singularily uncommunicative with her head on kneesand drooling alot .When she was going through the questioning with me V was constantly calling out but not actually able to say what she wanted .The nurse did ask me if it was normally like this and I said no this is a good day !

  • "No, this is a good day" LOL, Good one Georgepa....a good day....yep in two minutes time they are to ascertain the full extent of the patients needs....over here in the US,I just read that Medicaide/care is considering to consider the needs of the caregivers....I dare them....will they even know how? and with what will they award us; 4 hours of respite time every two weeks? that comes out to be 1/2 hour a will mean very little to the caregiver yet cost the American govt...millions of dollars spent by narcissistic senators so proud of themselves considering "the needs of those dear little caregivers"......keep your money fellas....


  • Brilliant, as already stated George!

    Lots of love


  • Good news but they do hang it out, don't they ?

    Love, Jean x

  • Don't they just ! :-)

  • That sounds very promising, I wish you luck 😊

  • You have worked sooo hard for this ...Let's hope this one will be the deciding factor in your wifes needs...

  • Well done George, steady as she goes. My love to you both x

  • this visit because you made an appeal. We are submitting for the third time tomorrow but we still have to meet with the MDT. These are my wifes OT, Comm. Nurse and Care Manager.


  • No we lost our appeal back in June but I am going for an Idependent Review Panel to challenge the appeal which if it was successful would mean that our claim could be backdated to last September .This is now a new assessment which in our area is no longer done by the community matron and OT but by specialist nurses who are appointed by the CFC people.I was a bit worried that it might not be independent but talking to the nurse who did it it seems to be free from any pressures from above and it is all they do so they know the system inside out and they see the client in their own home even if only briefly .You are allowed to start a new assessment whilst appealing a previous one .So best of luck Barrie it's a nightmare process isn't it.

  • Thanks for the reply.

    We live in Dorset and have submitted 3 times and it has been returned each time. I spoke to the CHC manager dealing with jenny,s application only to be told that it has not been rejected but returned because of the errors made by our MDT

    I think the whole process is flawed and causes a lot of distress.

    Hopefully 4th time lucky.!!!

  • That's terrible-have you had any advice from Beacon .They do a very good booklet outlining how to apply and what CHC arelooking for .They will do it all for youfor a price but their guide is free and they will give a number of free minutes of telephone advice .Just google beacon chc ..But I agree with you the whole process is seriously flawed .

  • That's disgraceful! If you have any energy, I would seriously start kicking some butt!!!

    Lots of love


  • About bloody time!! Well done Georgepa I'm sooooooooo pleased for you!! πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

  • Glad to hear that things are `looking good` for your CHC - no more than you deserve !

    Let`s hope they are quicker to process and actually cough up some payment. We have been waiting since December 2014 when we first applied for CHC. We were then refused funding in July 2015, I appealed last September , granted CHC in April and still haven`t received a penny !

  • Wonderful :)

  • Hi Georgepa I will keep my fingers crossed for you that everything goes well with the CHC funding. It must be very hard coping with everyday living with PSP plus fighting for the funding you so obviously deserve. hope you don't mind me contacting you but I have had a discussion with a nurse at the hospital dad is in and we have an appointment for an initial assessment to see if dad can be put forward for an actual assessment for CHC. I think dad will be ok for the initial assessment but not sure what the big assessment entails. I've heard it's very lengthy and that hardly anyone gets it !! Could you possibly tell me what this entails. At the moment dad has PSP and throat cancer they think he's had PSP for about 2 yrs. we have been told that dad has roughly a year to live with the throat cancer. He is on thickener for drinks and pureed food but what worries me most is the hallucinations he sometimes has and his mental state bless him. Again I hope you don't mind me contacting you but as dad has only just been diagnosed I feel overwhelmed by all the decisions I am having to make for dad and just really don't want to let him down. Take care with love Millie 1218 xx

  • Of course I don't mind .There is nothing to worry about with the full assessment although it is as well to be prepared . Phone the PSP association03000110122and they will send you areally good guide .Beacon on0345

  • Sorry pressed the wrong bit ! Beacon also do a comprehensive guide on how to approach the assessment They will send you a free copy if you phone03455480300 .Really the full assessment is just an expanded version of the pre assessment . But it is worth looking at what they are looking for . Each area seems to have its own approach as to who does the assessment . But it is likely to be your OT and community matron and check that they have done these assessments before .It is also worth gathering as much back up stuff as you can e.g. supportive letters from your Dr , Consultant etc plus any input District Nurses have had as what you are trying to establish is that your dad has a primary health need and requires more than just social care . From your description it very much sounds as though he does .Don't be put off , it is a battle but one worth fighting . Good luck - if I can help further just contact me .

  • Thank you so much for getting back to me and for the telephone numbers, I will call them tomorrow and ask for them to send me the information you mentioned. Fingers crossed he will meet the requirement to be able to be considered for the full assessment. I have learned so much from just reading everyone's comments and gain comfort from everyone's kind replies. Take care x

  • Hi there, well the meeting went well for dad and the nurse has said she is going to recommend dad has the full assessment, so first stage over with phew!! I now have a huge envelope with what the next stage of the assessment involves which will keep me quiet for a while. I have called the numbers you have given me and they are posting me some information so thanks again for those. Dad is still smiling which is lovely to see but he's very confused at times and we have noticed his swallowing is strained with the purΓ©ed food but he seems to manage the chocolate mouses we take upπŸ˜€ Thank you so much for your help, reading the many replies and posts really do help me understand dads condition. Take care hugs to you xx

  • 3 Cheers and well done!

    We are still waiting for the panel to meet. They keep cancelling - Well that's one well used old trick to preserve cash flow.

    Oh. this is such good news.

    Thanks for the cheering up.


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