The information from you all has been very helpful.
Unfortunately she is in Oldham and I am in Surrey but my
parents-in-law are going to visit her on Saturday to see
if they can find out the details and then I can make some
phonecalls and write letters. Sadly she herself is muddled
and we have not got very far trying to speak with her on
the phone, in part because phonecalls have such long gaps
while she is trying to speak and then she gets distressed
because she is aware this isn't normal. I have even found
it hard to discover whether it is health or social
services funding her bed - all she says is all her
benefits were stopped in order to fund the home and she
has no income of her own at all, no pension (only 55 and
no work place pension) and no property to draw on. So
quite where she is expected to find the money from I have
no idea! Oddly she has been on the apomorphine pump for
several months but the issue of cost has only just been
raised - it was started in hospital and so presumably all
provided by the hospital trust, but it seems the ongoing
funding was not considered when the decision to use it was
made.
It just makes me so frustrated that everything is so
inequitable.
And this morning I had my reminder about my prescription
pre-payment certificate falling due - at £104 for a year,
its a no brainer for the 5 items I have monthly. But then
my cleaner was struggling to find that amount to pay up
front for her pre-payment, so was facing having to pay
full charges monthly because she has cash flow problems.
If my gardener says the same I shall have cash flow
problems myself at this rate!
KT
On Wed, 11 Mar 2009 17:51:13 +0000
Geoff Schrecker <[log in to unmask]> wrote:
> 2009/3/11 Kathryn Law <[log in to unmask]>:
>> Does anyone know what the rules are for payment for the
>>tubing and infusion
>> sets that are attached to a pump for subcutaneous
>>apomorphine in a
>> Parkinsons patient who is under 60?
>>
>> My sister in law is now in a nursing home with
>>Parkinsons and has an
>> apomorphine pump for 12 hours a day.
>> She has all her DLA taken to pay for the home, and is
>>permitted "pocket
>> money" but out of this she is expected to pay privately
>>it seems for the
>> tubing and needles for the pump, which is apparently
>>£104 per month, which
>> is more than she has as pocket money.
>> She is in her mid 50s so still pays for prescriptions.
>>
>> It seems anomalous, as my daughter has an insulin pump
>>for diabetes and it
>> appears all the tubing and stuff is supplied (just as
>>well as student
>> budgets don't stretch that far!)
>>
>> KT
>
>
> A question for your local MP I suspect!
>
> Cheers Geoff
>
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