I have received a letter from my MP agreeing that AZ patients in care homes should receive some funding from the local NH Trust, he has written to the Dept of Health and a couple of Ministers and will let me have copies of the replies.
Meanwhile I requested another assessmant for Mum re NHS continuing care funding, but received a phone call this morning from a very sympathetic lady, who said our NHS Trust will not fund as all her care is given by carers not qualified nurses....no surprise there, she was refused 18 months ago.
I asked why, as AZ is not a survivable disease and the progression neither predictable or reversable, it is is not seen to be a terminal illness.
She said she understood the problems of AZ but they were not able to fund unless Mum was expected to die very soon, in which case they would step in, but withdraw funding if she showed signs of recovery...........................the last thing we would be thinking about then would be trying to get funding!
At my request, she is sending me the exact criteria our NHS Trust uses to decide wether or not to give funding in this area.
All I can do is work with my MP and try to find a way to help challenge this unfair system, if not for Mum, then maybe, in time, for others.
Meanwhile, on the registering of the EPA front, tomorrow is the deadline for my brother to put in his objections to it. I know he has to provide evidence to back up his allegations, he hasn't any as they are totally unfounded, but it is still a worry for us all.
Maybe something will go right soon, at the moment whatever I try to do seems to go wrong.
Kathleen
Meanwhile I requested another assessmant for Mum re NHS continuing care funding, but received a phone call this morning from a very sympathetic lady, who said our NHS Trust will not fund as all her care is given by carers not qualified nurses....no surprise there, she was refused 18 months ago.
I asked why, as AZ is not a survivable disease and the progression neither predictable or reversable, it is is not seen to be a terminal illness.
She said she understood the problems of AZ but they were not able to fund unless Mum was expected to die very soon, in which case they would step in, but withdraw funding if she showed signs of recovery...........................the last thing we would be thinking about then would be trying to get funding!
At my request, she is sending me the exact criteria our NHS Trust uses to decide wether or not to give funding in this area.
All I can do is work with my MP and try to find a way to help challenge this unfair system, if not for Mum, then maybe, in time, for others.
Meanwhile, on the registering of the EPA front, tomorrow is the deadline for my brother to put in his objections to it. I know he has to provide evidence to back up his allegations, he hasn't any as they are totally unfounded, but it is still a worry for us all.
Maybe something will go right soon, at the moment whatever I try to do seems to go wrong.
Kathleen