I last posted a few months ago when I was in the midst of a CHC application for my mum, which luckily was granted. My dad is essentially my mum's carer, but she is can barely communicate, can't walk (or even weight bare), needs to be fed soft foods and is barely continent. As both have resisted any help, we thought it best to have carers in for an hour and a half in the morning to get her out of bed, dress her and wash her and in the evening to put her to bed.
To be honest, it's been a shambles.
The carers are supposed to arrive at 9am, (we wanted 8 - but no availability) but they usually get there closer to 10, by which time she has usually soiled herself and become distressed. There is rarely twice the same carer, so she has built up no rapport. Until I complained only one carer was often turning up ( she needs two) so my dad was having to assist anyway. They are usually there for 20 mins a session, even though they are paid for 90 minutes and so on. The standard of care itself is often poor with mum not being washed properly. One even put my mum's dirty nappy in the food bin. Frankly, the situation is probably worse than if we had no carers.
I don't so much as blame the carers as the management of the company as the carers are clearly under loads of pressure. I have looked at the independent commissioners report for the company and it is dire. It's the only company in my area approved by the Council / NHS (sorry, never remember who is responsible for what, these days).
So I did some independent research and came up with an alternative care company who have excellent reviews and I have spoken to them and it sounds that they are committed to offer more care. I have spoken the CHC lady (again, I'm sure she has a more official title) and as they are more expensive and not on their books she is coming out to see us to discuss private health budgets. However, she was at pains to tell me that this would involve a lot more administration and liability on our part, so I am a bit worried.
I know nothing about these budgets and how they work. Ultimately, I'll do what I need to do to ensure Mum has the best care.
Does anyone have any guidance to offer?
Thanks to everyone in this forum for their input, by the way. I read every post and it's been so helpful to me. I'm a bit embarrassed that I only post when I have a question. I'm sure that with all that I'm learning I will be able to help others sooner rather than later.
Karen
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mattnkatsmum1
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You have the right to have this sort of payment instead of direct services.
All you have to do is set up a new bank account to receive the payments and to pay all invoices from there. The account cannot be used for anything else and you must keep invoices in order to submit them to the NHS if requested. It's easy to do.
Additionally if you run into difficulties obtaining the services you need the NHS (CCG) are obliged to assist you in finding them. You can purchase additional services, or in your scenario 'top up' the payments. Though I expect this should be using your normal bank account with separate invoices from the Pers. Health Budget Bank Acc. (Get clarification).
Having said all of that:
I find it disturbing that the Care Commissioning Group seem to regard the inadequate service as acceptable. Keep a diary of how the agency is failing and the consequences. Care routinely arriving late resulting in incontinence is not acceptable care. Put this to them and say that you want an agency change. Don't get caught up in discussions about money. It is unlawful for the NHS to consider or discuss costs when providing care and treatment which they have deemed necessary.
Simply put my initial approach has been to complain, give evidence of the inadequacy of the service and give them the problem. We got through some five agencies before we actually got one which did the job well.
Thanks Kevin. Could I take this a step further please? My wife has both CBD and PSP and a broken hip from falling down the stairs. We received CHC approval back in March and since then I have been grappling with the CCG to ascertain what the personal budget figure will be to help me recover some of the domiciliary care costs etc because she needs and we wish her to remain here at home. At long last a couple of weeks ago I was notified the total annual figure but I have searched high and low to find out how this is meant to work in practice. It was agreed I could manage the personal budget and while the PHB Choices website can enable me to 'purchase' services this is not what I had sought . At least not in isolation. A bank account was opened exclusively to handle her PHB costs but there is no mechanism that I can find for me to be reimbursed for eligible expenses incurred by me direct ie the domiciliary care 24/7 which was approved in the original assessment.Ironically I can 'purchase' a month of care from PHB website for the same agency I use but it is higher than I currently pay direct to the same agency which seems a waste. I have sought answers from CCG as to how and to whom I should submit paid invoices from agencies or independent self employed relief carers for example etc to justify the reimbursement request. To date I have yet to receive a response. Given this is now August and CHC was approved in March I am getting increasingly anxious about the delay let alone trying to find out how one can be reimbursed for eligible costs backdated to whenever is the approved trigger date ( CHC Approval date or when the application was submitted?)
I don't want to sound ungrateful as I am very relieved we shall be getting help from CHC - although not for the private physios/masseuse etc which don't appear to be eligible but so be it. But the budget implementation process has been a very frustrating experience with no help or guidance offered at all. I can't believe this is the norm so I would welcome any suggestions or guidance for how I can progress from this standstill. Thank you
Each CCG arranges things a little differently. I have not heard of a purchasing site before.
You highlight one of the key issues with Personal Budgets. The CCG buys in bulk and they get a discount on the agency fees. However if they have agreed X hours of domiciliary care the amount for that in the PB should reflect the prices you have to pay.
It sounds like they have done a poor job of explaining things. They should be paying into the account at least monthly in advance so that you can pay the invoices. You don't generally submit the invoices to them unless they have told you do do so. You keep them, along with bank statements (print them out if needs be) so that if they do a check you have them all to hand.
The payments start from the point they approved you CHC. This is what the regulations say.
The amount they have agreed should be sufficient to meet the care plan at the prices you can get. That is that there are agencies providing a service which is within budget. Now, if all the agencies you approach, which are within budget, turn around and say they have no capacity to take the care on, then you need to telephone the CCG and ask them to find one for you. They are obliged to do this. Despite the fact that they are giving you the money, they are still responsible for you getting the care.
Do you have a copy of the care plan? If not get one and then cost out the care for a month and see if the funds are sufficient. If not go back to them.
Lastly: There are no restrictions regarding where you get the care excepting that any home care agency has to be 'approved'. They cannot limit you to the website services. For example you might decide to 'buy in' a private professional carer. The whole point of personal budgets is, in some lingo, 'to free up the customer to avail themselves of the open market.'
If you go for an independent carer they must be a 'business' or you become an employer with all of the issues of N.I. The CCG will as you to provide evidence that this is being done. You cannot employ a family member.
How to mobilise a CCG? We all want to know the answer to that question!
I would write to the CHC manager saying that you need an urgent discussion as financial hardship is now putting your wife at risk because you can't get the services in. I would take the letter in (if you can) and mark the envelope 'By Hand'. They know if they don't respond in a timely manager they are open to the charge of negligence.
After four days I would start telephoning and asking to speak to the manager daily.
You should be able to get the managers name from the Website. Or, telephone and ask for their name. They are obliged to tell you.
I hope this helps a little.
Do come back if you have subsequent questions, or if I have missed something.
Oh, and please, if you would, come back and let us know the outcome and what worked for you... That way we all keep learning.
Thanks Kevin. I have already offered to give them the bank details and indeed would like to manage her affairs exactly as you suggest with the monthly sum transferred into her bank account. Fortunately I have agency and/or independent carers working fine for Emmy - my problem is entirely one of how to get CCG to help in practice by responding to my questions and explaining how best to go forward to mutual satisfaction. I am therefore glad to know I am not asking the impossible and will, as you suggest, chase them yet again and indeed deliver it by hand - a good idea for which thanks too.
Had our review today, went very well, carried out by the same nurse as the past 5 reviews. She offered personal health budgets as she has in some past years. I am interested that you say you used to have one. Is there a reason why you gave it up. It all sounds very complex to me and I am tempted to say better the devil you know.... the leaflet I received also offers two companies to help with admin Solo and Salvere. I would value your opinion. Best wishes Ken
Yes, they are obliged to offer them, but seldom do. Essentially they work out more expensive than direct services because by 'bulk buying' they get lower rates.
It's a very long story!
We got CHC when we shouldn't have done. We had direct payments very early on for physio and massage. Not a very large sum. Then they simply stopped paying into the account and it took a month to get an answer and even then they merely said that the payments had been stopped.
When we eventually got CHC on a proper footing I used them as if they were a Direct Payment. I telephoned and ask for agency changes or an increase of service when we needed it, sometimes specifying the agency we wanted. However there is a dearth of Home Care services in our area and the agencies were coming in from neighbouring towns. They were ding this under pressure from the CCG who, of course, is their main source of income. The service was often terrible. No shows, up to three hours late and quite often no-one picking up the phone when we called the office or the out of hours number. I just couldn't find an agency to take us on. So I dropped my requests for Direct Payments and let them use their clout to get the services we needed. That same clout often served to improve sometimes abysmal services.
Eventually we got a superb agency.
We were only asking for a basic standard of good practice and a modicum of reliability. I dread to think what sort of care is going on for those more vulnerable or less likely to complain, or make demands.
Thanks Kevin, the company I use for my respite breaks and are superb have indicated they could provide our care. But whether they would be paid enough may be a problem. I mentioned this to the assessor, she hadn't heard of them but took down their details. I looked at the Solo and Salvere web sites and they just do what the NHS currently do in finding and funding the care companies. I will wait and see. Be interested to hear from anyone who has had personal health budgets.
If only....! The bureaucracy and lack of clarity is a constant battle which I find so debilitating as her primary carer, when what really matters is trying to manage the myriad of symptoms arising from the progression of both diseases to ensure my wife is properly cared for and supported during these awful times. You asked for an update and in a nutshell we have reached an impasse - principally over their insistence that independent self-employed professional carers must be legally 'employed' by me as a 'PA' ( personal assistant) which is not only illogical, impractical and contrary to their own contract terms but enables them presumably to apply the lower hourly rate of support as a PA that bears no relation to carer market rates let alone agencies. It is a boringly technical issue but an important principle that my particular CCG seems to be rigidly ignoring. The consequences have a real impact on my ability to continue using the same night awake care support that I have had to pay for myself for over a year now, which was approved and recommended under CHC for a Personal Health Budget five months ago! What I hadn't realized until I started dealing with the CCG was that the CHC and CCG are two quite separate organisations under the NHS with different objectives.
I am sorry for the rant but I find this whole process extraordinarily slow, time-consuming and very very frustrating.
At least they have now offered to meet, which is progress...of sorts.
So thanks for your comments and views Kevin. Much appreciated.
Well, I believe the CHC team is a sub team which comes directly under the CCG. Writing to the Chair of the CCG can often be quite effective. You will see that the Framework refers to the CCG and not the CHC team.
Sounds like they're making the rules up as they go along. I get the sense that quite a few CCGs are putting up impediments to anything, but their direct services which, as you say, are cheaper.
Ironically this problem seemingly doesn't arise if one is dealing with the Council Social Services, which I told them. Even the CCG's own employment document specifically states that members ie PA's cannot be self employed and yet this particular CCG chooses to ignore its own advice! Anyway I will see what happens when I meet them and hopefully have something useful to impart afterwards.
When the PHP Budget support care plan was submitted for their approval months ago following CHC approval I was also asked to sign something called 'An Employment Guidance' attached to the CCG contract because clause 7 of said contract stated ' Whether you intend to employ a member of staff or not, you must sign a copy of the employment guidance and return a copy to us to indicate that you understand and agree to these responsibilities’.
Then when you read said actual schedule/addendum cause 17 states ‘ A member of staff cannot be self-employed’. My point to them is surely this is simply contradicting itself isn't it? How can I have an employment contract with someone who is already self-employed and then have to call her a personal assistant? All I want to do is either submit the self employed carer invoices settled by me to the CCG for reimbursement assuming they are eligible ( just as they do with Social Services and as described in the brochure you sent me a link for). The alternative is presumably to set up an account on the PHB Choices website for the self employed carer to which she sends her bills which once sanctioned by me online are then settled by PHB Choices direct - just as they do for the domiciliary agencies. But no, they want me to actually employ my self-employed carer and do eg their tax and NIC and all the rest of the employment duties including dealing with HMRC etc. It just seems completely daft to me, let alone onerous, inefficient and more expensive. I don't know, am I missing something?
I wonder if by self employed they mean sole trader? Someone who is a registered company is no different from any other company. They just have fewer staff to allocate.It sounds like they are contra contradicting themselves, as you say.
I wish you well with the meeting and, if you have the energy and inclination, it wuld be good to hear what they say.
I am now being offered a personal health budget and have a meeting next week. Your reply to my previous query and the above correspondence means I will go into the meeting well informed. So far I have found our CCG to be very fair and helpful.
Just read Kevin's reply which as usual is spot on. When we had an unsatisfactory company we complained to the district nurses and where switched to our current company within a week.
We had 3 agencies before we were sorted! Some carers were great, others dire. Complain to the council or CHC in fact complain to both. They need to know this. The agency should be closed if they can't offer decent care.
By the way, my husband was always an early riser but I got him to agree to carers arriving at 8am. This was before we got CHC and so the council tried to find an agency who could do that time. We were offered 12.00pm!!! So I politely told them that was totally unacceptable. We ended up having the council's reablement team in the morning and they were great!
We had to have an agency for the other three visits however. If the CCG is giving this agency a poor review then time to shout? Ask them why they are still allowing them to operate. There may well be people who are not happy but are not given the right training and the management sounds terrible? Our last agency wasn't based locally they were based quite a few miles away. Look up other agencies and see how they rate. Then tell CHC you need to change to the one you choose and why.
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