CUTS IN RESPITE CARE PACKAGES

[Guest]

Have any other carers experienced cuts in respite care packages in the last few months?
What action ,if any, have they taken to try and get their origional respite restored,and have they had any success?

[Matt Hill]

Hi there

I'm sorry to say we have had lots of examples of cuts. We ran a campaign earlier in the year called "Support Families : Don't Cut Care" to try and influence budget decisions but now most of those decisions have been taken.

The most high profile challange has been in Birmingham. A couple of Carers UK members from our Birmingham branch were involved in this challange -we're all very proud of their fight.
http://www.bbc.co.uk/news/uk-england-bi ... m-13455068
http://www.communitycare.co.uk/blogs/ad ... gners.html

Best wishes
Matt

PS _ Although this is about cuts I'm moving it from cuts watch area which is more for specific examples. I'll put this in general discussion and hopefully more people will see it.

[Guest]

As a carer of 3 children with learning difficulties(ASD) we had an asessment from our local authority (both my wife & I are carers -I left work to support her as her health was deteriorating with the stress).
This has now been unilaterally withdrawn with the comments that " you need the respite payments but we don't have to fund it".

Where do we go from here as we have no support network, just each other and whilst we can survive the day to day stuff without prospect of a break at sometime in the future who can tell!!

Any advice????

[Booksey]

No a cut in care but we have been told there is no money for the extension we require. Which leaves my hubby sleeping in living room with no access to washing/showering facilities or toilet.

[SezzieC]

As a carer of 3 children with learning difficulties(ASD) we had an asessment from our local authority (both my wife & I are carers -I left work to support her as her health was deteriorating with the stress).
This has now been unilaterally withdrawn with the comments that " you need the respite payments but we don't have to fund it".

Where do we go from here as we have no support network, just each other and whilst we can survive the day to day stuff without prospect of a break at sometime in the future who can tell!!

Any advice????

Hi David,

I am a proud mother of two daughters with ASDs and am also recovering from a nervous breakdown brought about by stress and very little in the way of support (not to say constant battles with Local Education Authorities over school placements, etc... long story).

It's difficult being a couple, isn't it? We try to bond during quiet times though (they do happen - usually by about 2am at the moment when we're both too exhausted to even watch the TV together).

I'm awaiting advice like you... just wanted to say hello and let you know you're not alone though.

Sezzie x

[Eun]

What respite? The only respite we have ever had has been through the children's hospice but since my son didn't conviently die when he was supposed to at the age of 18 (now being 26) there is nowhere else for him to go to.

Adult hospices don't cater for his age group and the childrens hospice wants him and his friends out. In a way I don't blame the childrens hospice as they are a charity (although it does annoy me when they want to use him for fundraising purposes but then don't want to have him stay at the hospice). Some kids hospices in England have built units for the older lads on to the hospices but they dont want to do that up here. Of course in some other English hospices the kids are kicked out at 18 (despite there being no other suitable services) and that is what they want to do up here.

My husband and I have had two weekends break in the past year and I am disabled as well. The health of both of us is starting to break down and like others say its a wonder we are still together with the amount of stress we have been under for the last 20 years of caring since our son was diagnosed at the age of 6.

I love my beautiful son and I don't want to lose him but what is the point of better medical care etc keeping our sons alive but then not providing services for them to make their lives worth living?

Eun

[shrek]

What respite?
been wait 2 year for care package to be set up

[sue31didit]

I have had to complain, its a very long story, and the complaint is still going on, I've not brought it in here due to it being so intense and a lot to explain, however, they have offered a respite a week away 4 times per year, for my husband to be taken care of in a respite home, [I was told I am expected to have 4 weeks off from caring per year........excuse my giggle at that! what after 29 yrs!] anyway, he is also being funded by my carers plan to have one day per week at a day care center [he suffers from Bi Polar and other needs] its been a long haul, yes there are cuts, but mine only came about because of a huge complaint and I tell you, its a loooong story that if I write it up on here no one would beleive it!

[Lazydaisy]

I would definitely believe it Sue. It wrings you out even more than with normal caring, when there is extra stress with not having your needs met,and then having to complain to be able to put something into place. xx

[g.herschel]

I say this time after time ..just who is the respite for??? it is or should be for the carer, be the carer a spouse , parent, son/daughter the respite care break is not for the disabled person to have a "HOLIDAY" it is for the carer to have a break a rest some time to recharge their batteries this break will enable the carer to return to caring revigerated ....i have been informed time after time that i req a certain amount of respite breaks weekends off even the odd day to give me some " me time" but who pays my mother does not have savings or own a home yet when we asked for the breaks to be set up we were informed because your mother has a "good monthly " pension she can pay for her respite care break this will allow me to have a rest ...but why should she pay for her own respite care to allow me to have a break ...respite care costs £900 per week and then for my "holiday" £500 , £600 per week carers breaks should be funded by the local authority or the N.H.S. ...we deserve a non means tested respite care service ....