My wife, Pat, has PSP. I look after her 24/7 at home. It's been suggested that I apply for CHC but I cannot find out whether CHC is suitable in our situation. If it were granted what would it do for us? How would we use it? Could it help with respite care for myself? Is CHC a form of nursing care or is a regular sum of money to be spent on carers? Would we lose attendance allowance? Any help very much appreciated.
An at lost husband.
Contact either your local Hospice, or the district nurses. The hospice should be involved with you by now any way. Get your GP to refer you. They provide support, my husband regularly went to a day centre, which was brilliant. He got a day out, being well cared for, I got a day off and lots of support, carers groups, counselling etc.
With our CHC, they paid for all Steve's home help and respite in the local nursing home, when I needed it. Even paid for a week in Paignton, so we could go and visit my daughter.
If you are providing 24/7 full care now, then you must be eligible, although beware, it is a postcode lottery. I got it easily because they had dealt with PSP before and had been well training by that particular Carer!
Phone your GP NOW!
Lots of love
Anne
I could not have survived without CHC, although I know many folk have to. It is not means tested and you shouldn't lose any other allowances you receive. My husband continued to receive disability living allowance. It will pay for carers and respite. You may not think your wife needs carers yet, apart from you. I was coping alone until it was granted and then within days of it being granted, my husband was given night carers 4 nights a week. They put him to bed and got him up in the morning as well. It was a life saver for me and I was finally able to have more than 3 hours sleep a night. By the time he died he was given 6 nights. One of our carers was with us for 40 night hours a week for 3 years and another did 20 hours amounting to £1500 a week (sadly the carers only saw a fraction of that). I didn't need any further day help but others prefer days to nights. It's whatever is best for you both.
I managed to take my husband away on holiday to adapted accommodation and CHC payed for night staff then as well, 4 holidays in Suffolk and Bournemouth. He also spent a week in a care home near to my son so he could see our son's new home without having to sleep there. We took him out daily. All paid for.
If it has been suggested, go for it. You may not get it the first time you apply but keep going for it as, although you may not see it at the moment, it will make a huge difference to you as PSP progresses.
Best wishes.
X
Get in touch with your local hospice, who organised it for me, your GP and the district nurses.
We got it for mum via the district nurse. It does take a long time to be processed and there are many criteria to satisfy. Mum only received 1 payment before she died-she had deteriorated very quickly.My dad was her full time carer and it really took its toll on him too. So apply for it as soon as possible. Im so sorry youre in this position-xx
My husband has just been awarded CHC funding and I am on my first respite period as we speak and it's all paid for, you get respite paid every few weeks and all home care paid for. At the moment we only have one and a quarter hours care each day to get Ben up and put him to bed (2 carers each visit)I could have more visits but don't want the intrusion at the moment. He gets a taxi to the hospice one a week and I collect him. As Bens condition deteriorates I foresee it will be more difficult to manage and will need more hours. I requested a morning sit so that I could attend a class but that hasn't been forthcoming as yet as will need 2 carers to help Ben with the loo as he isn't doubly incontinent as yet and need 2 to get him to the toilet and clean him after, so not perfect. If he was doubly incontinent it would be much easier, they added if he would wear a pad and he gave me the thumbs down and I'm not prepared to undermine his dignity so we will manage as we are. Ben doesn't get agitated at night at the mo and sleeps well so we don't have night carers yet. I know all this can change in the blink of an eye and have been reassured that the help will be available as and when needed. All is paid for and Ben didn't have his PIP payment stopped. I would really recommend that you get the hospice to support you, the speech and language therapist and Parkinson's nurse also great with support for us. Best of luck
Love Kate xxx
CHC 
CHC level of support given
