Hi there - my wife was diagnosed with PSP last December after six years of the healthcare profession being unable to work out what was wrong with her. Since then her symptoms have deteriorated rapidly and she was admitted to hospital last week following a fall where she cut her head open. She has undergone several 'assessments' where eventually one consultant agreed that she now needed to have a proper continuous healthcare assessment but has since been transferred to another hospital where they appear to be going through the whole initial assessment process again. They seem to think that she might be able to return home but the family and I feel that her condition has deteriorated so much that this will not be possible and that she really now needs some specialised care for the time she has left. If anybody has been through the same process and can offer any advice on how best to manage the continuous care assessment, it would be great to hear from you.
New Member Looking for Help with Continuin... - PSP Association
New Member Looking for Help with Continuing Healthcare Plan Process
Welcome to the site where you will finally meet experts in caring for PSP
You say your wife has deteriorated. Can she eat or walk ?
Others will give you their experience of claiming CHC
My husband was in hospital and I then nursed him at home with the support of the excellent palliative care team from our hospice.
Ask any question you want and someone will know.
Jean x
Thanks for your prompt reply.Swallowing is difficult and her balance is dreadful.Daytime care is more than I need but nothing available at night time when I need it most.
I had no help apart from what I paid for. The hospice gave him a day every week and occasional respite.
When he was in hospital with an infection because he had swallowing issues they offered a PEG which we had already agreed he didn't want. I
I said I wanted to nurse him at home. They wanted him out . At that point I said I needed help and everything was put in place with no further assessment. If they say she needs palliative care you are in a strong position.
When he was no longer able to get out of bed nights were easier !
How very frustrating to wait six years to get a diagnosis. Seems most everyone on here has a variation on that story.
Welcome to the site. I am not really familiar with CHC processes but there are several members who can help you. My father, CBD which is similar to PSP, spent the last 11 months is a nursing home. If you wife doesn't come back home just keep in mind you are her medical advocate, stay in touch with the staff, explain what PSP since they'll like not have heard of it. Things that don't seem right for her, question it.
Ron
It seems that even with an advocate funding is not certain and the cost seems prohibitive.
Look up the posts by Kevin. They were of great help to me going through the CHC funding process. The key for me was preparation and having the Community Health team on side. Particularly the Community Matron. The hospital should begin the process as part of the discharge procedure. Hope this helps
Thanks for your prompt reply. It seems an advocate is needed but the cost seems prohibitive with no certainty of succeeding.
Hi Welshrugby and welcome!
There are posts from others which will give you references, advice and experiences.
At the top of this page is a looking glass. Search here for 'CHC funding' and I think you will bring up a number of past posts.
I live in New Zealand and support the AllBlacks! Hope you won't hold that against me!
Hugs
Jen xxx
Hi Jen - Not at all ... unless you beat us in the World Cup! Many thanks for the advice. The family and I are now on the case. Graham x
I am my wife's advocate and manage her care through the fund manager. in the assessment process you must try and become the expert studying the input on CHC funding on this website.You will have to push for funding because the default position will be to deny funding. Two important points. CHC funding is not means tested. Secondly do not be morally blackmailed into accepting more than you can cope with. Your health is important too. If you pm me with contact details I would be happy to talk through my experience and find out what stage your wife is at ( bear in mind no two psp cases are identical). Rob
My phone No. is 02920 750763 and my E.Mail is grahamjames 121@btinternet.com In fact my daughter is supporting me mainly in this case and it might be better if you were to talk to her. Her phone No. is 01525860478 and her E.Mail is cathy@lawlers.co.uk.I am very grateful to you for your interest in my case.
Hi. I agree that you should look up the posts by Kevin. He has provided some very useful links. I am in the process of appealing so I know how daunting it can be. Also take Jen's advice about looking at related posts. Good luck and all the best AliBee x
Thanks .I will do so.
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