Hello again fellow travellers. I posted recently about our Continued Health Care (CHC) assessment - and today I had a telephone call confirming my husband has been found eligible. Hurray 🎉
I wish it was that simple. The phone call was from someone tasked with provisioning care for us - describing it as a "day sit" - 10 hours a day 7 days a week.
She was asking what agency our current (self funded) carer was with, then made it clear that a self employed carer couldn't be part of her package.
I asked about a Personal Health Budget (PHB) and she immediately said "well if that's what you want I'll refer you to the PHB team. But it will take 4-6 weeks to set up. And you will have to source your own PAs."
We agreed she would hold off sourcing until I had more information from the PHB team.
I've searched previous posts but found very little. NHS had this
Does anyone have more experience with this and how flexible each option might be? Do you know what is implied in "day sit" and "PA" - for me neither of these sound like they do personal care, handling, or any kind of medical intervention? Any idea what rates are covered?
And similarly - if the sourcing is done for you, what flexibility do you get about changing shifts or going on trips or getting some continuity in who turns up and how they interact with you as a family?
I know I should be really happy today but it feels like there is lots more to navigate in this complicated process. 🌻🌻🌻
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Mums care is sorted by CHC but they haven’t really stipulated what they need to do, they do all mums personal care, drinks, food and even escorting her out to the patio for a cigarette (not sure if she’s even going to be able to do that for much longer).
If you have a good care firm you will get a couple of regulars to come if, some not so good rely on agency staff which can be problematic due to lack of knowledge of Mum even though there is a detailed care plan from the care firm which was written with me and Mum.
I believe the personal budget means you receive the funding but have to arrange everything. Keep audit trails of all expenditure for them to review, sometimes in the form of a card for payment or bank transfer to your account. Downsides is if you don’t use an agency sick leave etc won’t be covered. Also if the rates are higher than the budget you may not easily get the extra (I think).
The conversation has started and I feel the communication with the PHB team is good. I have questioned the options for respite and night care. Typically we are up in the night (0-5 times) with the obvious fall risks as he tries to get to the toilet or stand up to use a bottle. Total sleep is often less than 6 hours.
I did find out that there was no recommendation for respite or night care - apparently the MDT had noted "G sleeps well - supported by wife" - no idea what would have given that impression! The conclusion was that only day time care was required 😫.
(Edit: I've now read through the "Care Act Assessment Document - updated version with CHC outcome" and it says in so many words "G also has night times needs as he requires support with accessing toilet facilities and he remains at risk of falls". So I've pointed that out and hoping it can be included in the care plan. Happy to undergo a separate assessment as long as we can establish that G cannot be left unattended overnight)
The contact from PHB is going to arrange a separate assessment of night time needs before the plan goes to be signed off. Hopefully that won't delay things too much but he advised against leaving it for the 3 month review as it might take a lot more than 3 months before it takes place, it's better to get it right.
I've got lots of homework to do still but feeling positive. X🌻
I don’t know what the other stuff is, but I do know that PA means personal assistant; I know that as I have one. She’s wonderful and I hope if you need to get one, you’re as lucky
What a difference a day makes 😊. This afternoon I had a phone call from the Personal Health Budget (PHB) team.
In very simple terms, they explained that I could mix self-organised care and provisioned care. In other words, I could keep our existing "PA" who has a great relationship with my husband, takes him out and pushes him to do exercises . She has so much experience with what makes him happy - and we don't have to change her! Additionally they could find and contract with a care provider to give the wrap around care needed - within the identified needs - so I don't need to scramble to find cover and negotiate my own prices. There would be some time spent on setting things up including a dedicated bank account for the direct payments - but we'd be talking a few weeks, not months.
I am so happy and relieved. Good luck to everyone else navigating the funding path. 🌻🌞
Congratulations. Very happy you have been successful. You articulate everything so well in your posts which I will use to help me start the process for my husband.
So pleased to read that your CHC funding was approved by the ICB and that you’ve spoken with the PHB team too. The direct payment set up can seem a little daunting but I’m sure the PHB team will help you navigate through and support you all of way to ensure that you can keep your regular familiar carer and if needs be, recruit additional PAs too.
We also have mixed provision - both notional and direct payments. Ideally, I would love all direct payments but find having the mix more manageable from a contingency point of view. However, this only works due to the agency provision being a selective team of regular/familiar faces who have a good relationship with Mum and both understand and respond well to her specific care needs.
Thank you, I'm glad to hear these arrangements can work well and I am really hopeful. I think what I learned is that I had to ask i.e I had to know that there was an alternative or I would have been pushed rapidly down the full provisioning route with little or no discussion. And there are clearly some very good professionals in the CHC teams - and some that need to improve their communication skills 😀🌻
sounds like they are trying to wriggle out of providing care are trying to put barriers in place so you decline -get help from the spe ialist PSP nurse if you have one
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