brandisuki

[brandysuki]

my wife was diagnosed with PSP in january ,she is receiving plenty of nhs help and we now have carers coming twice a day. I have been reading about applying for chc funding, I know it is extremely difficult to obtain but am wondering when is the best time to apply and who to approach to get the ball rolling? Any help would be greatly appreciated. Mike( husband) carer.

[Bergenser]

We've been told that too few people get assessed for CHC - and some get the assessment too late when the needs might appear more predictable (e.g. when the patient has lost so much mobility they are no longer at risk of falls...) We went in circles until we got the GP to ask the community (district) nurse to do the initial checklist. You won't be "frozen out" if you don't get through initially but they may be unwilling to do another assessment unless/until you can demonstrate that something significant has changed from the previous attempt, so you would want to feel reasonably sure that you you can demonstrate some of the needs in accordance with the criteria.

If you wish to do a sense check first, try downloading the checklist (available from the government website if you search for NHS continuing health care) and also download the PSPA advice for health care professionals.

It may take you a few hours but make your own assessment, and if you feel you are at least close, ask for the district nurses to do it for real.

Best of luck. Give the PSPA a call, they will be really helpful - and there is a lot of advice on this site.

Our meeting is tomorrow so I am likely to post about it soon.

🍀🌻🤗

[Barnsleygirl]

Please could you let me know what NHS support you are getting. I really struggle to understand what support is there. Thank you

[Mel547 in reply to Barnsleygirl]

I contacted our Adult social services department at our local council , they were amazing ! They coordinated OT, SALT, helped with advice for any benefits we could claim , blue badge , motability car . Our GP unfortunately was as good as useless! I also contacted PSPA for literature that I could give to relevant services .

[Barnsleygirl in reply to Mel547]

Thank you

[Diggerandsam in reply to Mel547]

Hi, you say your GP was as good as useless. I find that very interesting. I had a stroke five years ago which left me paralysed on my right hand side. Over the next couple of years I started to improve; to the extent that I could tie my own shoelaces! slowly and with difficulty but I could. Then I noticed that i appeared to be ‘going backwards’. Over the next year I deteriorated so much that I had a GP appointment. She put it down to old age!!! when, in fact, it had nothing to do with my stroke - it was PSP. GPS? I no longer take everything they say as Gospel

[David750]

Hi brandisuki, additional to all the valuable advice you will find on this site, if you have not already done so contact the PSP Association (pspassociation.org.uk) Helpline. You can talk to someone who knows your area and the help available in regards to CHC funding. Most of the successful applications I am aware of have had a medical professional involved in filling up the application. The PSPA website carries guidelines to filling up a form. All my very best wishes.

[brandysuki in reply to David750]

Thanks, will follow your advice. X

[Kelmisty]

The hospice did my Mum’s.

[brandysuki in reply to Kelmisty]

Good idea, we have hospice help.