Hi everyone, especially Heady. We have been successful with CHC application. After 4hours of discussion, evidence giving and questioning all of the group felt that hubby had "Primary Healthcare Needs". Have to say the Team were very supportive but were very careful to ensure evidence was available to support their decision.
Next stage is being given funding to find nursing support ourselves as we will be the employers of the "carers". Have to get my head around this so anyone who has been through this or going through it all ideas/info very welcome. Not sure where to go to get carers so again a steep learning curve ahead.
THANK YOU ALL for your kind wishes and great advice.
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denmob
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Jillian6, I am looking into getting a software program called Dragon for my husband. He may have broken his hand in a last fall and it is hard for him to type. Have you ever tried it? I know of someone with CBD and it seems to be just the ticket. nuance.com/dragon/index.htm
we have got it, but its too complicated for my wife to ever master use, and shes not that interest. Instead just uses small dicataphone wgich is cheap.
I am happy for you that you have been able to secure this funding, I never went down this route again after my husbands first assessment. However, he did get the Higher Attendance Allowance which is a DWP benefit, and non-means tested and I was awarded 15 hours per week care allowance paid for by Direct Payments through our local social services who were extremely supportive, with these two allowances, plus our contribution, enable us to get 20 hours of care per week in the home. I was also lucky to be awarded funding for respite care, again live-in care. I was able to enjoy a weeks holiday in June through this.
I do not really like to advertised but I used an agency called Bluebirdcare, who were wonderful.
But, and I have not way of knowing the validity of this, I was recently told by someone that they are going into the care profession and that he was given just one weeks initial training and just one day "shadowing" a more experienced worker, he is then expected to pick it up as he goes a long.
However, they are not called carers for nothing, because they really do care.
Ye of little faith!!!! Love to say " i told you so!!!" In a case like this. Makes your existence worth while.
I am really glad you got the funding, use it wisely, make sure it's what YOU want and need, not what others think they will provide. Like you said, you are going to be the employer, so take charge!
Hi Denmob, I am so pleased you have managed to secure this funding. It is such a relief to know care will be provided and paid for. I live in Kent and once funding was awarded, carers were found for me and they are brilliant. Up until now I have had night staff from 10 pm til 7 am Monday to Friday but have had a phone call today to say the night nurse will stay til 8 am and someone will come and help get my husband up on Saturday and Sunday as well. this is because I mentioned to the hospice staff on Friday that I was having difficulty getting him out of bed by myself if he isn't awake before 6.45 am. If he is both me and the carer get him up together. We are going away for a week in September and October, self catering, and they have arranges night staff for then as well.
I hope you manage to find carers as good as ours. We have the same girl from Tuesday to Friday and another every Monday.
I think this good news deserves a celebration so I will open a bottle of wine tonight. Cheers!
Hi again, I've just looked back at your original post to see how long the process took and realised you asked me to let you know about how we use the funding. I'm really sorry I didn't reply then as I've only just seen your question but have answered it now anyway. I don't do anything, it's all taken care of.
ARE YOU HAPPY IWTH YOIUR CARERS WHO COME IN - I CNA WHOLEHEARTEDLY RECOMMEND HOME INSTE AD SENIRO CCARE WHICH IS A FRANCHISE AND THE SAME 2 CARERS COEM TO ME MORNGING AND EVENING S ) I AM NOET IN NEED OF CONTINUING CARFE YET BYT THE DAY WILL COME I KNOW
UNTIL THEN IA AM HAPPY OT PAY TOWAR DS MY CARE = JHI ARE MORE EXPENSIVE THAN TH ECOUNCIL AGENCIES BUT R REALLY GOOD1
As promised I will let you know how CHC award proceeds. Have been told that there will be a review in 3months and could lose it if the situation changes, ie if T becomes fully bedridden then his scores under mobility category will decrease because he is less at risk of falls! If his needs in the other categories remain the same then he no longer meets the criteria for CHC and he loses the award! Strange as it may seem he is apparently less in need of nursing care! Obviously everyone's needs are different but factors that seemed to be important were that he was a danger to himself and others and his behaviour is unpredictable.
Will continue to describe our CHC journey as long as you all feel it is useful. However there is no consistent assessment across the country as the judgements of the teams are very subjective. Also if the team who make the assessment all agree then the award is confirmed immediately; if any member of the team doesn't agree then it all has to go to a panel who make the judgement instead. We had a report from our GP, our Speech and Language Therapist and the Hospice Doctor and Senior Nurse. All were very supportive. The Neurologist, although agreed to write a report, didn't send one!
That's all I can give at the moment except to say making notes before the meeting meant I could give lots of details about daily life and used these notes during the meeting. You can also have others there to support you, as Heady said it is your opportunity to describe how difficult living with PSP is. My health has been affected as I'm sure yours has, and our GP also commented on this thus PSP puts family and others at risk.
Yes, please keep us up-to-date. We are no where near that stage, ( I hope!) so it great to hear all the pit falls, what works and how to proceed. Let's face it, none of us had even heard of CHC until PSP came into our lives.
I will be relying on you to help me and anyone else through this!!!!
Hi D, yes Kent does things differently. After the pre assessment and assessment and completion of huge form, it automatically went to Panel which is not attended by anyone who knows Colin. I wasn't invited but as I said before, supplied lots of further information. Colin was assessed after 3 months by the continuing care manager and said there and then that it would continue and she wouldn't come out to see him again for a year. I've had several telephone conversations with her since and today the night nurse stayed an extra hour for the first time and showered him. Oh the difference that made! We both got him back into his rise recliner and I dressed him. I still gave him his early morning hug when he stood to transfer and he laughed. I think he thought he'd miss out on that with the carer here. I did have to warn him to keep his hands off her as it wasn't me in the shower with him and gave her permission to slap his hand if it wandered. They both laughed so the day started brightly.
I hope you don't have too much difficulty finding the caring carers you need.
I don't know what it has been like for you or anyone else . We have had carers for 14 months and so far had 78 different ones . It is double handed because he is ceiling hoisted . I can get him in and out of bed using it on my own but obviously it isn't good for me to do so all the time .e
I CAN FULLY RECOMMEND HOME INSTEAD SENIOR CARE WHICH I GOT OFF THIS WEBSITE WHEN I 1ST JOINED -THEY A R A FRANCHISE AND OPERATE ACROSS THE UK (ORIGN FROM THE USA)
For the first 2 weeks we had different people nearly every night. I had to explain Colin's needs and what to be aware of umpteen times. All were from other countries and some we could hardly understand. One forgot never to let him stand without something behind him and he ended up running backwards across the bedroom and falling on the landing. Another woke me up with her snoring. I ran in to Colin thinking he was choking. He was sound asleep and fine. The night nurse who was supposed to stay awake, had made herself a bed out of 2 armchairs and I ended up shaking her as shouting didn't wake her. I found out she worked all day at another job as well. After the 2 weeks I phoned the company and told them it was not acceptable having so many carers and I would contact continuing care requesting a different organisation if things didn't improve. Since then we have had the same girl 4 nights a week and a different one every Monday. When the Monday one is away, the other one does Monday as well. Obviously there are times when they can't work but we usually have one of half a dozen who we know to fill in. Our Monday girl does spend most of her time on her mobile, texting when I'm talking to her but she is kind to Colin and he likes her. The other one is brilliant. She is from Slovakia, taking a psychology degree at the open university. She is caring, funny, and nothing is too much trouble.
Could you ring the care company and tell them how you feel. With the amount of staff they have, they must be able to offer more consistency, unless the turn over is the problem. You don't need the stress of this, you have enough already and it's not fair to your other half to have so many people involved. I do hope something can be done to improve things. I'm not sure what our situation would be if I hadn't voiced my opinion firmly.
Wow what a variety of experiences we all have re: carers. It is a minefield. I am very grateful to you all for your responses. Just like your comments about CHC I have noted them down and building up a new file. This "journey" we are all on - sorry for the cliche - seems to be full of potholes and quicksand. It definitely helps me be more on the alert hearing about your experiences.
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