Post Code Lottery

[RDHCarer]

IHi
I am a new member to this Forum. My mum was diagnosed with Azheimers back in 2005 and is now fairly advanced although she is still able to be cared for safely in her own home a short drive from where I live. A care agency do the three "meal-time" calls each day, getting her up, washed toiletted etc and I supplement this care with an afternoon social call and a "put her to bed" call which either I do or I am lucky to have 2 ladies that help me to share the load. She seems happy - she laughs every day - my rather unscientific measure of her wellbeing. She is not prone to falling and can still transition from chair to anywhere downstairs - with prompting. So I believe her home is still the best place for her. And it was always her wish she should stay and die there - so I am trying to be true to that!

The care company have been good and we generally have regulars who know her - though as with any care company there are occasional hiccoughs when they are stuck and send someone new in - rarely successfully. They pay a bit more to their carers - a massive £10 per hour not including travel!!!, but still above the average rate which is so desperately low. There is no escaping the fact though that the rate paid does affect the care quality - even though I have met many heroic carers who do it for almost nothing, these little miracles are the exception in terms of being able to deal with the complexities dementia presents. Mum's care is arranged through the LA Social Services at the moment and she has been self-funding for 10 years - though that has taken a big toll on her finances which are now below the £23k threshold.

I have just been alarmed to learn that the care company have given the Local Authority mum is in, notice that they are going to withdraw from this authority because the rates in this LA are much lower than the rates paid by the surrounding LAs where they also work - it is just not profitable for them. Mum has been with them for 3 years now and a change like this will be massively disruptive - especially now. Introducing a new team and getting them used to mum's needs and managing her successfully takes time, skill, professionalism and the right attitude and sadly my previous experience with other companies tells me these are in short supply! The last transition of care we had to do was a disaster until I fought for change and found this company with some individuals help! And if the LA are chasing the price to the bottom, as they seem to be, I feel I'm unlikely to get the right care from their provision.

It looks as though my best bet is to get her care needs re-assessed. To get a financial assessment. And then to ask to go Direct Funding. I have been putting this off thus far for 2 reasons - 1) while it was all working I didn't want to upset the apple cart and 2) I was loathe to take on the burdens of becoming an employer - tax, NI, setting up a pension scheme!! Do we really have to do all that just to care for our parents? I am also concerned that by re-engaging with Social Services again they will try to take control and dictate the care my mum receives.

Has anyone had similar experiences? Are my worries justified or am I just being paranoid (it can happen ). Have people any advice about the Direct Payments / employing care companies / carers directly option?? Thanks for any help / advice.

I have to say - I think the Post Code lottery applying here is an appalling state of affairs and has nothing to do with the wellbeing of the cared for. Surely there needs to be some standards introduced to avoid this scenario? I thought the new Act was supposed to help? Seemingly not!

Thanks

 

[kaycee30]

Hi, dont have any direct experience but did start looking into this for my Dad. The charity Mind were extremely helpful and their legal help line is superb.
Hope this helps in some way

 

[Kevinl]

Hi RDH, welcome to TP.
Personally I'd go down the Direct Funding route then employ through an ageny so you don't have to deal with the tax, NI and all that side of things. I'm sure there will be several in the area and once you're the customer tell them how you want things doing.
In a way it's good that this company has turned this particular council's business down, if they're not paying a realistic price then hopefully all the care companies will refuse the business too and this ridiculous race to the bottom can stop, likewise, care homes should set a price for both self funders and the council and if the council don't want to pay it invite them to take their business elsewhere.
K

 

[rafferty]

Hi , I live in Wales and have just been through a similar situation as you , mum was under the care of an agency, like you with mixed experiences . The care company withdrew their care for the county mum resides in. I have gone over to direct payments but although I am the employer we have the option of using a government funded managed banking company called diverse Cymru . They deal with all payments to the carers ,their national insurance and tax . All I have to do is sign the time sheets and confirm hours . It is the best thing we have done . I have employed a carer from mums previous company who visits mum 3 times a day 7 days a week . It has made such a difference . I hope you can sort something out . Good luck . X

 

[RDHCarer]

Thanks for the comment! I think it definitely looks like the way to go. Finding someone you know that is good is the key I think so you have done well there. I would be a bit nervous about being so dependent on one carer though however good they are....people need a break and the people coming in need to be familiar. So I was thinking I am probably going to need to try to find three or four carers at least. I have seen some "register" websites that list "Personal Assistants" (not the business type but experienced carers). Looks worth a shot but there are just so few with availability. Think I have secured the current agency privately for a while so hope that can tide us over. Good luck!!

 

[RDHCarer]

False Teeth

So here's a funny (or not so funny) one. Mum has an upper denture plate for her front teeth. It stays in most of the time fine but came out on a sandwich at the weekend and now, try as I might, I cannot persuade her to put them back in. I'm worried that without them she won't eat properly and that leads to decline in understanding and everything else.

Anyone know any tips or tricks to get her teeth back in??

 

[arielsmelody]

(Sorry no advice for false teeth!)

We've just been through the direct payments process with the LA for my MIL. I wouldn't worry too much about becoming an employer, dealing with payroll etc. Our LA put us in touch with a charity which helps with direct payments, and through them they signed us up with a payroll company which deals with all that side of things.

For the direct payments, the LA set up a bank account (which they can also access to see transactions) and they email to say when they've paid the monthly amount in. We can then access the bank account online and have a bank card to make payments to carers.

There is a certain amount of extra paperwork inevitably, but if you are comfortable dealing with online banking it isn't too bad. For us, the biggest headache is that the LA took six weeks to set up the bank account, and since we started mid-month there was a muddle with several weeks money being paid to the old provider which hasn't been resolved yet. So don't be scared of doing it from an admin point of view, but make sure the bank account is up and ready to use in good time.