Hi all,
My father has advanced PSP and we are considering applying for the NHS continuing healthcare package. Has anyone in the UK had any success with this? I read that the eligibility criteria are very strict, but it sounds like a very good service, which would be invaluable for us.
Thanks for any advice 😊
Hi from what Ive heard the patient needs to be pretty near the end of life to get this. How advanced is your father? This is my understanding anyway sorry cant be more help xx
We have CHC. It seems to depend on your postcode, to how easy/hard it is to get! They are quite understanding in our area, North Somerset. We got it relatively easily. One visit from the district nurse, one from the CHCpeople and hey ho, it was awarded. The thing to remember, PSP is an illness not a old age disease. Keep stating that at every opportunity. Tell EVERYTHING on the worst day case.
It is good, as we are above the means tested care. Now I don't have to worry about money at all. I get a reasonable amount of care, think it probably needs to be upped again and I can have respite every so often. Which for me, is the only thing that is keeping me going.
Best of luck!
Lots of love
Heady
What do you mean by having respite every so often? Is that something I can talk to CHC about? Do you mind me asking how that works? Many thanks.
Every so often, S goes into a nursing home for a week, that they pay for. We have had one session so far. It did me a power of good, able to carry on for a bit longer. At the beginning of April, he is going back for two weeks, while I have work done on the house.
Lots of love
Heady
It is worth getting the help of one of the voluntary organisations who are experienced in completing the applications. They know how to answer the questions , we had the support of the local hospice, though my husband died before we got anything
Have a word with your area PSPA adviser, they wiĺl advise. Peter.
Hi we got CHC after my wife fell and broke her arm and NHS combined Local Gov fell on me went from no care with occaisional OT visits to daily care package, DN daily contact, then while M still recovering DN raised and got M CHC, saying if we waited until M's arm healed probably not eligible. ( M's arm never healed properly now fixed and clawed).
Agree with Heady and others that CHC is a postcode lottery especially if you are in England, in Wales seems more joined up between local gov and NHS. It is well worth applying for especially before nursing home needed as if you have it and need to move to a nursing home the NHS pays the fees.
Best wishes Tim
I don't think so Tim we still waiting after two years . Nofacebook.com/rita.morgan.5/... have palliative care involved as well.
You have to dead before you get it here . My mums was allowed the week she died after being in a nursing home for tHeee years unable to do anything for herself after a severe stroke. .
I am hopeful this time but time will tell , will let you all know .johns not been outside the house for three years and I only get two X two hours of respite care. I don have carers three times a day . When they turn up .
They are useful if They turn up at a time when we need them but other than first thing in the morning I have already see to John .he isn't incontinent so I am not going to leave him and wait for them to turn up am I ,
Thank you all so much for your responses. We'll seek advice for the assessment completion and keep our fingers crossed that we win the postcode lottery!
Do stress all the awful things , all the things now that's something I find very difficult to do I shoot my self in the foot. You. An it do and he cannot , how he changes , unpredictability , swallow bowels bladder , behaviour etc etc
Don't hold back . I wish you the best of luck . Don't give in
Hi, welcome to the site although I'm sorry you have reason to join as psp is horrid. My father and I are currently having mum assessed for CHC. Basically CHC is nursing hours allocated to the patient. Although mum doesn't need nurses at the moment, things are changing very quickly so there's no harm getting the assessment done. The patient can be reassessed four to six months down the line as things progress. One thing mum does get is carers every morning to wash and dress her and carers 3 nights a week from 10pm-7am so that my dad can go in a different room and get some sleep as mum very rarely sleeps. We had to push for the night care but finally got it. All this is funded by social services. I hope this helps. Good luck 😞
New Member Looking for Help with Continuing Healthcare Plan Process
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