Success rates with CHC funding application

[SallySmith]

We are in the process of appealing a CHC rejection and I am looking for any evidence of the % of CBD suffered who successfully get funding.

If you are in the U.K. please could you indicate whether you were successful, successful on appeal or declined.

We have had very little support for my Mum and we are trying everything !

Thanks in advance

[Javan]

For my wife the young people dementia team sorted all the paperwork and this was successful. You need good people to help you, we were lucky.

[SallySmith in reply to Javan]

Thank you can I ask with NHS trust area you are in?

[Javan in reply to SallySmith]

Cambridgeshire

[enjoysalud]

I suggest writing in on the SEARCH PSP ASSOCIATION bar.....CHC and CBD.

A number of past posts came up....some may be relevant and helpful.

I live in the USA so can offer no guidance.

[SallySmith in reply to enjoysalud]

Tried this already but thank you. Trying to rally some specific if anecdotal evidence to support an appeal and letter to our MP and chair of the local health authority.

[kenh1]

My wife has CBD and was awarded CHC funding on discharge from hospital the discharge nurse was super efficient, I was permitted to attend all the meetings, we have since had 6 annual reviews all carried out by the same nurse who truly understands the condition. I also found the Social worker from the council to be very helpful. She pointed out she was on our side as getting CHC funding saves the council a lot of money. There are many posts on this site regarding CHC and it is very much a post code lottery. Find out what criteria they are looking for and match it to your Mum's symptoms.

[SallySmith]

Thanks you. Can I ask which health authority you are in?

Both social service and district nurses have been utterly useless. We have had 3 different social works and 5 different district nurses in the last 6 month. Social worker have been appalling.

So trying to rally some evidence, even if anecdotal to support letters to our MP.

Thanks again for your response

[Willow_rob]

Dear Sally, my wife was awarded CHC funding for PSP after 7 months during which time she deteriorated to such an extent that the assessors fast tracked her instead of subjecting her to a full assessment. We were fantastically supported by our community matron, our OT and Social services who had already conducted their own review. In addition Kevin (contributor) provided invaluable advice. I suspect you are being caught in a postcode lottery and may now need to seek legal advice. In the meantime try to find an ally like your community matron. All the best. Rob Need

[SallySmith in reply to Willow_rob]

Thanks for the advise

[NanBabs]

Good luck.

I have a long history of `fighting` to get (or maintain) CHC funding. My husband was funded after 18 months of appeals, for over 2 years, then it was withdrawn in October 2017 after a review in July 2017. I appealed again and went to a local panel meeting last November. Waited until February for their decision and of course it was NO. In July 2018 I applied for an IRP (out of area appeal panel) but haven`t heard anything yet. In the meantime my husband died at the end of May.

I challenged every domain I thought was incorrectly graded, with evidence, but the local review panel was `a done deal` because they then `downgraded` (sorry, "interpreted the evidence differently" as they sharply put it) some domains even more.

I have had no support from social workers which I believe is because they are aware of my finances. I discovered this through a freedom of information request while putting together my IRP appeal. I resisted a financial assessment until earlier this year and yet the information I received shows that they were aware of my situation as long as 2-3 years ago.

It is all about funding - or rather the lack of it - no matter what they say, and it depends on who is in charge of your local CHC team. My area `imported` someone from elsewhere because she was known to cut costs !

Don`t give up. xx

[Satt2015 in reply to NanBabs]

A bloody disgrace Nanbabs!!

Quite honestly I can’t think of any other words except bloody disgraceful and I’m so very sorry you’ve gone through this unnecessary s**t!!

Hugs x

[NanBabs in reply to Satt2015]

Thanks Amanda, but sadly I`m not the only one to endure all this just at the one point in our lives when we need support.

xx

[SallySmith in reply to NanBabs]

Thank you x

[BattlingCHC]

Beacon Healthcare (

0345 548 0300) offer up to 90 mins free advice and a fee funded case-work / advocacy service. They're independent but have the free advice services funded (or part-funded) by NHS England and are approved of by various charities for the elderly and disabled (eg Age UK, Parkinson's Society, etc). They're difficult to get hold of (I suspect they're a small organisation, overwhelmed by work) but I've been impressed by their knowledge and helpfulness when I have been able to get through to them.

Suggest you work out what the most pressing problems are that you can think can be sorted out in a 90 minute free session … and then get in touch.

For what it's worth, my family plans to use their fee-funded service. The cost of advocacy last time I looked was less than half the weekly cost of my relative's self-funded nursing care.

You might also like to look at the "Care To Be Different" website, advice, blogs and links.

GOOD LUCK!

[NanBabs in reply to BattlingCHC]

Be wary of the cost of Beacon with personal representation. They are certainly good and generous with the free 90 minutes but when I had them accompany me to the local appeal last year the cost was £1500 - and we lost ! I was told before what the cost would be but the brochure I had was 2 years old and the costs I had previously estimated to be around £500.

Since then they have given more free advice on the IRP appeal which, if successful, I will do myself.

[BattlingCHC in reply to NanBabs]

OUCH! Thanks for your advice.

[Dance1955]

Hi Sally that's terrible do you have a diagnosis from a neurologist? ignorance that's what it is

I am English and live in Australia we have got top Level care for my husbands PSP had to fight for it don't give up keep insisting do what you have to do for your mum go to the TV whatever it takes how dare they reject your mum good luck my friend we're all here for you maybe come to Australia 🤗

[SallySmith in reply to Dance1955]

Thanks, yes we have diagnosis from UCL in London, local trust were useless and we had to fight for a referral. Will keep fighting!

[Evertonian]

Go and speak to the people at your local hospice. 😄

[SallySmith in reply to Evertonian]

No hospice support either. All accesed

via the local GP and they won’t refer as the hospice has no capacity !

[Evertonian]

I was just wondering if the hospice could help you with your appeal, I suppose we were lucky our hospice got my wife fast tracked. Their social worker helped us. Good luck Sally and you win the appeal xx

[SallySmith in reply to Evertonian]

Thanks for the advice