Respite

[Jude]

Dear Gang,

If Storm is spitting feathers and I'm spitting chips, then it looks like we've got crispy chicken and french fries all simmering in a hot vat of boiling oil, ready to pour on any any bureaucrat that comes for dinner!

Right! It's pretty well apparent that WE are not happy with the SS, nor are we particularly enamoured of any Private Care Agencies, Nursing Homes or Nursing Unskillaries who can't take blood, but still manage to get their £ of flesh without any worries.....

I think it's time to HIT THE MEDIA in a big way, guys...! Stephen Ladyman is not a great deal of use to anyone, emails to MP's don't seem to getting us too much further and has anyone yet had an answer from their letters that I posted to Old Tone in August? I certainly haven't.

As much as it is very comforting to air our views on TP every day [and thank God we have a forum in which to do so], BUT it still doesn't get us any further forward really. We are preaching to the converted! We ALL know the problems, we ALL live them daily after all....

What I think we need is a very big National Media blitz. I'm not thinking about two paragraphs on Page 47 of the Daily Mail, but a series of articles aimed at getting the message out and delivered. Panorama did a wonderful job, but it's all gone quiet again now.

Is anyone interested in collaborating on this? Just off the top of my head, I think we need a series of articles probably along the lines of:

Living with Dementia and AD
A Day in the Life of a Carer
Caring for a Spouse with AD/Dementia
Caring with Parents who have AD
Respite, Nursing Homes and Community Care
Who Cares for the Carers?

If anyone is interested, then let's see what we can come up with.
Let's see if we can do something positive. More and more people seem to be suffering with AD, which means more and more carers sooner or later. If the whole country is at home looking after their loved ones, then there will be a bigger crisis than now. Mind you, it should solve the unemployment problem. No doubt the Goverment will claim this as a victory, whilst refusing to pay benefits to the unpaid and unappreciated masses.

Jude

 

[storm]

Hi jude, I am totally with you on this one we need the media to listen to us the carers .The information on A/D benifits care homes social services etc etc are already available i had no problem getting hold of leaflets and booklets telling me what was available to me as carer but you try and get these services thats when the trouble starts you are just passed around from one dept to another i really do think that they hope you will give up! What we need is a carer being followed from begining to end in thier struggle to get what is supposedly thier rights.Iwill give this a lot more thought.We need a positive plan of ACTION. STORM

 

[Chesca]

Dear Storm

Interested, yes. Right now, too tired to think but do have a shred of a thread of an idea.

Will have a good thunk and see what I can contribute.

Lotsa
Chesca

 

[Heather A]

Hi Storm

The SW is wrong. You are not responsible for sitters' NI. tax etc when you use the direct payment scheme. SS organise all that. They are fobbing you off or the person you spoke to is not fully informed of the facts. Try ringing the 'Head Office' of the SS in your local authority and ask them for the number of the direct payments office. All these different SS departments are scattered around the county and I dont think one department actually knows anything about what goes on or is available from other departments. I have direct payments and i do not deal with any of the paperwork. The only thing I do is to return each month a time sheet of the sitting hours I have used and then they work out the tax etc It is definitely not your responsibility.
So good luck. Keep fighting for your rights even though you feel as if you are banging your head against a brick wall.

Heather

 

[storm]

Hi all, Had a call yesterday from yet another gov body but i think the mist is clearing, she explained that we will be assesed by the mental health unit and they will provide a support worker and they arrange suitable respite and care support.S/S are there to provide any equipment or domicillary help needed i think thats what she meant but she is coming out to see me in 2wks also she is going to give mental health team a push to come out and do assesment.I have definatley not had a carers assesment so S/S got that one wrong.People keep promising the earth and saying you should not have to do all this alone but nothing seems to change we will wait and see. storm

 

[Jude]

Dear Storm,

Please could you keep a diary and short notes of all of these calls and visits. Could be really helpful later for an article about wading through SS red tape.

Thanks.

Jude

 

[storm]

Dear jude, ok will do but i think it may equal war and peace before we get any sense out of anyone. STORM

 

[Chesca]

Dear Heather

Thanks for the information re the 'bull' being talked about NI and other contributions should anybody come into your home as a carer.

Isn't this just part of the confused messages we are all receiving from untrained advisers? it's almost Chinese Whispers. I care for my father, not AD, but otherwise immobile not to mention his bereavement at losing Mum to AD. His simple (from a SS view) physical needs have recently involved me in hours and hours of phone calls, recompleting allowance forms 'lost'; visits, 'heated debates' with people possessed with the brains of rocking horses, far too young to even envisage the problems and fullly equipped with a get out clause of buck passing to another department. And this after the virtual maze of Mum's financial affairs!

I also found, in this miasma, that I suffered from information overload delivered in a language second only to computerspeak in its deliberate attempt to make the speakers feel important and the audience non the wiser. I eventually switched off and to some degree am still in 'snooze' mode. It's such a bore, so damned unnecessary and bordering on the cruel when people are undergoing such emotional and lifestyle upheaval.

Anyway, where was I? Thanks for the concrete advice: next time you're mixing some (concrete that is) I've a few boots I'd like you to mould.

Lots of good wishes
Chesca

 

[Sheila]

Hi all, you are so right Chesca, WHY is everything surrounded by gobbledegook, just when you need it the least? Overstretched from caring, battered by paperwork, then they land all the claptrap in creation on you which is so often irelevant or just a way of using up time if you ask me. I think it's thought that the longer they take sorting things out, the more likely we are to agree to whatever THEY say! Love She. XX

 

[Jude]

Dear Sheila,

If the plot is to wear us down with confusion, then they'd all better go back to the drawing board. We carers deal with confusion every day and are a bunch of very tough cookies. We have to be, to do what we do and survive every day.

Jude

 

[Sheila]

Too right Jude, think the've picked on the wrong bunch here if they want us to go quietly! Love She. XX

 

[storm]

tThis is just what i mean we want them to listen to what we need and off the top of my head we need the differant gov bodies to work together and keep us properly informed. Supposedly my mum had a care in the community assesement the other week i was talking to the social worker when she came out and at no time did she tell me that was what she was there for, the first i knew of it was when the care plan came in the post! storm

 

[Jude]

Dear Storm,

You've just sent the whole of the Civil Service and combined Govt Social Departments out for a severe sugar fix....!

Work TOGETHER??? Can you be serious??? You are preaching anarchy here! The whole fabric of society will collapse in a screaming heap on Monday morning. The Ministry of Disinformation will be up in arms and the SS will go on strike - which basically means they will do what they do best, ie: nothing.

The Government operates as a non-profit organisation. That doesn't only mean in terms of finances. It means that the end users [us, the great British public] profit in absolutely NO way at all. Asking them to be productive would be tantamount to insisting that HM wash up her own cereal bowl in the mornings.

Still, 5 November is looming fast......

I read with interest today about Old Tone's heart problems. It wasn't just that fact that his beats slower than anyone else's that was amazing - it was the fact that he actually possesses one at all that was remarkable.

Jude

 

[storm]

Hi all,Is there anyone that gets respite funded by S/S? if so how often is it provided?Do they place people in care homes or hospitals? I know this sounds like 50 questions but i want to see what
responce i get ,there is method in my madness. storm

 

[Jude]

Dear Storm,

A Carer's Assessment will or should address two points. Firstly, whether YOU are eligible for an allowance yourself, which is means tested only on your personal financial situation.

The second part is a component comprising provision for Carer's Vouchers - up to £2500 per annum - which can then be 'traded' against Respite Care for loved ones.

You need to organise a Carer's Assessment for yourself in order to claim these benefits. This can be done via the SS, or via your Social Care Team at your Local Authority/Council offices.

Hope this clarifies things a bit.

Jude

 

[storm]

Hi Jude, Yes i think iget that bit but i am also trying to work out how many carers have gone through the system and how much help they recieved from S/S or whichever body it is with respite, do you get it once a year once a month? is there a set rate? is it better with vouchers or let them arrange it?Are there any carers out there that are happy with the care packages set up for them by S/S or mental health teams? thanks storm

 

[Geraldine]

I successfully used the Carers vouchers when Mum was at home with me. I got 6 hours a week plus some overnight help. I've just read in our local paper that becuase the scheme is 3 times over budget this year already they are pulling the plug with less than a weeks notice. This is horrendous- those vouchers enabled me to keep working. Apparantly in the first year the scheme was underused with only 1 in 4 vouchers being redeemed (you had to use them within a month and then get the next month etc ) then it was publised more and according to a local charity worker the SS were handing out like confetti! Hence the muck up. Social service eh! you couldn't make them up could you.

Geraldine

 

[Jude]

Dear Storm and Geraldine,

Oh well - that's just WONDERFUL isn't it???

I've only just recently had a Carer's Assessment and haven't even got the 'okay' back yet. Presumably the whole voucher system will now be on hold until the new budget which is when - next April?

More band aid stuff without enough stickability.......

Jude

 

[barraf]

Repite

Dear All

I am waiting for a carer's assessment, have been since early September.

Have recently exchange a series of emails with the Team Manager of our local Community Care Service.

The responce is slightly better than talking to the duty officer on the phone, and I am hoping it will speed up the assessnment if only to get me off her back. Don't hold your breath.

Cheers Barraf

 

[Jude]

Dear Barraf,

I've been blue in the face since late July........


Jude