I was giving full time palliative care for my mother, diagnosed with terminal cancer in August last year. She passed away on Feb 28th.
After applying for benefit, I was appalled at how long it took them to finally pay me any carers allowance, decision not made until February 20th after applying the year before.
In the decision amont other things, I was held accountable for living overseas too recently, so they wouldn't pay me anything for the majority of her illness. I can agree with that in most circumstances, but given how much the public pocket is saved by me giving care I would think there would be an exemption to that rule for being a full time carer.
I was not able to make the claim for Income support or the premium until I received the carers allowance decision and we are now on May 8th, no income support and a letter today informing me that as my name is on the deed of a property I own with my ex wife, I am classed as having savings of over 16000 pounds so do not qualify.
I have no means sell or access fund from that property, my ex isn't even British or residing in the UK and I have no means to contact let alone negotiate anything.

I am furious, and borderline thinking about going back overseas or pitching a tent somewhere now, I am not dramatizing.

I do not understand how anyone who has stopped work in order to give full time care should be held to rules such as this. I can only imagine the amount of finances involved should she have been admitted to a hospital bed during that time. I thought the whole idea and the plan was about keeping hospital beds empty and giving care in the community?

Of course, she was my mum and I would have done this for her regardless. I also get the distinct feeling that is something which was likely considered and discussed behind closed government doors, knowing full well that relatives are the key to community care from district nursing and social care taking place and are also the very people who can, if anyone, be messed around.

I even heard someone on BBC breakfast, I forget whom, the other week holding end of life palliative care up as an example of how things should work as far as care in the community. Truth be told, NONE OF IT IS WORKING! From what I have mentioned in terms of benefits for carers , to the fragmented and poorly organised care system in place.

During my mums illness, being bed ridden at home it was brought to my attention by a member of the social care team that she did not believe my mums bed sores and dressings had been checked once within nearly two full weeks. She also commented on the leg bag for her catheter which had clearly also not been changed and was stained brown inside.

There was confusion over the leg bag from the nurses who made it perfectly obvious that not only were they unsure of their own job descriptions but all other persons in other teams too like social care.

I will be haunted for the rest of my life by some of the avoidable suffering my mum had to endure because of this farce of a system. Ran myself into poverty and troubles doing so because of being denied most benefit I needed to live.

They were around canvasing for the election just recently, you can imagine what kind of pretty language I used to the conservative representative whom I informed to get off my property and why!

Has anyone else run into such issues while trying to give care? The way I see it I put myself into poverty to have care provided which help my mum suffer. Would she have suffered in that manner in a hospital bed? No, I do not believe that she would to be honest. She was in for a week and they never stopped disturbing her.