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Elderly parents

Chc funding but no practical help

18 replies

Nearlyoldenoughtowearpurple · 06/06/2018 21:20

My dad has Parkinson’s, dementia and now metastatic melanoma brain tumours. He has been sent home from hospital with an expected prognosis of 6 weeks.the nurses at hospital were fab and have arranged a fast track chc package to fund at home care as that’s where he wants to be. My mum is same age and has her own health issues but has so far cared for him .
This afternoon we brought him home and the chc office has phoned to say that basically they can’t provide any care as they have no agencies that cover our area. She is going to look but doesn’t seem to think she can find anything .
I have found an independent carer who can do a bit, they can’t fund this as they can only pay via agencies that are chq registered. We can self fund this but she can only do four mornings a week.
I feel a bit abandoned, they promised us help but now say tough, you are on your own.
Bizarrely they would be fully happy to fund a care home place.
We live next door so as a family we will be providing support but we have work commitments.
Has anyone had any experience of this situation ?

OP posts:
UnderTheOakTree · 06/06/2018 22:15

I'm sorry that I don't have any advice or experience to help with your specific situation but my DF has Parkinson's & dementia - I just wanted to send you a supportive hello, so you know you're not alone here. (I love your username - it's such a great poem!)

Stillnotready · 06/06/2018 23:27

I’m so sorry you are facing this.
Ask them if your father can have a personal health budget www.nhs.uk/NHSEngland/patient-choice/personal-health-budget/Pages/about-phb.
You may be able to recruit someone else to pick up the care but manage this yourself.

hatgirl · 06/06/2018 23:37

It's completely and utterly unacceptable.

He shouldn't have been discharged from hospital without a care package in place although I understand he and you as a family probably wanted him home ASAP.

This is a common issue with CHC funding in people's own homes as many CCGs still aren't set up to properly case manage/ broker care for domiciliary care as traditionally it's been the role of social services for whom this type of set up is their bread and butter.

The problem is that if you kick up a fuss they will probably just offer a care home placement instead as that will 'meet need'.

Personal health budgets are a lovely idea but I can guarantee will take longer than 6 weeks to set up.

Unless you are very rural I would be surprised if there are absolutely no agencies that cover your area. You wouldn't have to but I suspect if someone got on the phone to the main CHC registered agencies in the area one of them would be able to provide at least some of the care.

hatgirl · 06/06/2018 23:38
  • you shouldn't have to
hatgirl · 06/06/2018 23:39

grr

*Main CQC registered agencies in your area

Needmoresleep · 07/06/2018 07:32

Given the short time left to him, I assume you wont want to seperate him and you mother. Is there any chance of a 24 hour a day live-in carer. Someone from an agency like Saga or Country Cousins? Perhaps supplemented by nursing visits of some sort.

If it can be arranged perhaps SS will accept the costs (hatgirl may know more) and it would save you all from spending his last weeks in an on-going battle.

And Flowers.

Needmoresleep · 07/06/2018 07:35

And if you have not done so before it may be worth a quick look on the Macmillan website for other help and ideas. (If needed there are fast tracks for things like blue badges, attendence allowance etc.)

CMOTDibbler · 07/06/2018 07:47

Have you been in contact with your local hospice? They have outreach programs to provide hospice care at home and so may be able to assist in organising appropriate care

hatgirl · 07/06/2018 08:09

It's the NHS rather than social services that needs to accept the costs unfortunately nomore that's what the problem is.

Social Services have systems and processes in place for this kind of situation because it's a very common situation for them to manage. Social services employ social workers to manage and broker care packages in people's homes, check care plans are working, provide support to carers etc. They have systems in place to to approve one off, urgent or bespoke packages of care like this.

The NHS often doesn't have the same systems in place because they work on a much more structured and hierarchial/institutionalised model so other than district nursing type provision they don't have a huge amount of 'community care' services at their immediate control and disposal, and due to it being the NHS it's often a slow process to set up and broker new contracts with care agencies. The people in charge of 'case management' (all the 'stuff' that makes lives easier at difficult times) are nurses whose background and expertise is clinical rather than social welfare, and their role is usually to assess, award funding and then move on to the next person, not to continue to manage packages of care in people's homes. They simply don't have the resources, skills or time.

The NHS manages this as best they can usually by having contracts with a few agencies yand give all of their 'domiciliary CHC' work to those few agencies, but that system breaks down if those agencies don't have the capacity to cover urgent care packages or if they are required quickly in areas they don't already have staff.

On top of that there are huge care staff shortages in many areas anyway.

Sadly the NHS only have a duty to provide and fund care, so if they can't find an agency they will probably try and push the family towards residential care instead. There's pretty much zero chance they will pay a non CQC registered live in carer.

hatgirl · 07/06/2018 08:11

Sorry needmoresleep it appears I also need more sleep Grin

onedayiwillmissthis · 07/06/2018 08:29

Speak to your GP and get District Nurses involved. This happened with my husband...discharged terminal brain mets 2-3 week prognosis.

Once alerted our GP referred to a hospice and the district nurses arranged for the 'Rapid Response Team' to come out same day.

We were told they were the team who 'fill in' on a short term (days/weeks) when patients have no care package set up and would assist until the full care package (2 carers, 4 x daily plus 3 night sitters) could be organised.

My husband lived a further 6 months however the 'care package' care only actually started in his final week. Many cock ups on their part plus shortage of agency available...lots of apologies and 'this shouldn't happen' etc...Not much help.

Luckily the Rapid Response Team and Phylis Tuckwell Hospice people were more useful...and lovely people.

So get on to GP & District Nurses. Good luck x

Nearlyoldenoughtowearpurple · 07/06/2018 09:21

Thank you so much all
One day, I’m so sorry xx

Yes, I was just a bit shell shocked yesterday I think, they promise so much yet within an hour of getting home they tell us sorry you are on your own.
Am sorry for all those people who don’t have family to support them, it’s scandalous .
Financially ridiculous as well, she said, after saying they had no carers, that they would happily finance full nursing home care .
Am on the phone now to all the local cqc registered agencies, hopefully someone can offer something.
Thank you all again, feel better to hear your stories and for the support

OP posts:
hatgirl · 07/06/2018 09:41

Be clear to the agencies when you speak to them if you are willing to accept any support over no support at all. Many won't be able to provide all of it right from the word go but may be able to increase what they can offer as the weeks go on and other clients go into hospital or pass away etc.

Oneday's suggestion of asking if district nurses, rapid response and hospice at home could also be utilised in the short term is also a good idea. It's not ideal because realistically continuity of care is crucial in end of life care but if it fills a gap until something more appropriate can be put in place so be it.

Devilishpyjamas · 07/06/2018 09:47

When time is limited I go right to the top. Find out who the commissioner is and get in contact with them. I’s Email and cc the MP ‘for information’. Even with their ridiculous procurement systems they can commission services quickly when they have to. And if they can’t they could arrange a personal budget quickly if the commissioner says they have to.

Agree about finding the provider you want (that’s a good idea). Then go straight to the commissioner. Copying in the MP does help ime. Also if you can find who is the top of the NHS England tree for this sort of thing copying them in helps as well.

UnderTheOakTree · 07/06/2018 10:21

Have you contacted Parkinson's UK to see if they have anyone in your area? They're really helpful if you ring the helpline & seem to be able to put you in touch with the relevant person very quickly. Just an idea - it may be outside of their remit, but they might have suggestions?
I hope you're able to take the odd moment for yourself too. BrewThanks

Needmoresleep · 07/06/2018 13:21

May I also join in to thank hatgirl for her clear and informative posts both here and on other threads. Most of us post from individual experience where we may have been lucky, or unlucky, or have been in a position to support care needs personally or buy our way out of problems. It is such a maze.

Nearlyoldenoughtowearpurple · 07/06/2018 21:24

Thanks again
Community care team phoned today and she couldn’t believe that we hadn’t been offered any carers or that they wouldn’t fund the only carer we had found. They didn’t seem to know as much as hatgirl !
Have phoned all agencies I can find and one thinks they might be able to offer some cover, they are phoning back after weekend, so there is hope.

OP posts:
Stillnotready · 08/06/2018 21:37

Once again I am so sorry you are going through this, where I work we have jointly commissioned CHC and social care and use the same referral tool and pay the same rates. But here I am with my work hat on.

As a daughter watching my own DF need the same support I remember how hard it is, all I can advise from personal experience is to make the most of every chance you have to be together, and time becomes elastic, minutes spent together can feel like days, if you pause, and be present.
Much easier to write, so difficult do.

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