Self Directed Support

I was diagnosed in 2008 but my neurologist is confident my first relapse was in 1998. I’ve now moved on to Secondary Progressive and a wheelchair. Enough about me though, I have a problem that is impacting my care and I’m sure I won’t be alone.

About 3 years ago, I was moved from Direct Payments to Self Directed Support to pay for my care. I was told how great it would be because I was in effect an employer and my carers were my employees. For 3 years it has worked well until 3 weeks ago. My local council have decided to introduce charges for my care. These charges are having a real detrimental affect on both me and my care. I have had to pay £613.25 in back charges to 1 April and £63.25 per week from now on. I’m at a loss as to how they expect me to live on two thirds of my benefit and I hear today that the government are planning a further £12 billion of welfare benefit cuts. I’m no mind-reader but I’ve got a good idea where the axe will fall. Back to the SDS though, I know I need to contribute something to my care and I’m happy to do so but at a level whereby I can live not just exist.

As a footnote I’ve learned from the SDS website that there is no legislation in place compelling a local authority to introduce charges. That leaves us in a split society where some authorities charge and others don’t.

Maybe I should move house!!


I do not know if there’s anything you can do about the ongoing charges, but I would certainly challenge the imposition of retrospective charges you could not possibly have known about. Surely, it’s a basic principle of anything you have to pay for that you know up-front you have to pay for it, and how much.

I know you probably wouldn’t have, but you could argue you would have made other arrangements, and/or agreed to reduced care hours, if you’d known what it was costing you - or that it was costing you at all! How can they impose back-charges on something you’d already accepted on the basis it was “free”. Or did you get some kind of notification, back in April, that you would be liable for charges, but they’ve only just got round to letting you know how much?

If the demand for back-charges was the first you’d heard of it, I’d certainly be querying how you can be “back-charged” when you hadn’t been told there was any cost to you at all, and therefore didn’t have the option of either declining it, or going elsewhere. I do not realistically think you would have done either of those things - probably because you couldn’t (I conclude you depend on the care, and that if you’d turned to the private sector, it would have been dearer still, because you’d have paid the full whack, and not a “contribution”.)

But the principle remains - if you had known you were going to be charged, you would have had the opportunity to decline, or look into alternatives.

It’s a bit like if my water company suddenly decided to double or treble the price AFTER I’d already used the water. True, not quite the same, because I’d have known the water would certainly cost something, but not that it was going to double or treble. Changing it going forward is one thing, but not to change it for what you’ve already had.

There must be a way to challenge the back charge, if not the rest.

I assume the contribution is means tested, and that they’ve somehow arrived at the conclusion you can afford it. Have you seen the calculation on which it was based? Have they included the value of your house, for example, as if that was cash you have available to spend?


I agree with what Tina’s said. If they hadn’t previously advised you of anything, I don’t see how they can back-charge you. I’d speak to the Citizens Advice Bureau too for advice on appealing. They should know all the ins & outs of it all. And call the MS Society helpline too.

I get direct payments at the moment without any charges, so I’m interested to know what happens - keep us posted with your progress : )