my brother was refused funding despite having advanced PSP
Is it now time to take a partion to
10 Downing street or ???
the the lord mayor in manchester ???
as thats where we have experience
How else xan we get the care for our family members as local CHC teams are determined to deny funding
Yes, we are in the same boat with my dad. It seems to me to be a postcode lottery. I am planning in disputing their decision.
I absolutely agree
This seems to be something a lot of the PSP community have experienced I think a petition to parliament is a great idea and I’m sure would get lots of support.
Totally agree .... especially as my wifes illness was triggered by post op delirium after emergency colorectal surgery.
I feel all your pain. My late husband, with advanced PSP, was “ fast tracked” after a disastrous 5 week stay in hospital ( but that’s another story! ) and much fighting on his family’s part. He then managed to beat the system, having been declared “ End of Life, “ by living at home with full time care for over another year! The whole system is shrouded in mystery and unfairness and is a total disgrace.
It needs more than petitions to No. 10. It needs the PSPA with a couple of full time carers to be on mainstream TV and Radio ( C4 News, Breakfast progs, Woman’s Hour etc ) vehemently exposing the whole CHC fiasco as part of the Social Care debate LOUD and CLEAR.
I agree I lost my partner two years ago to PSP and I really feel that PSPA could do more to raise awareness of the disease along with CBD and MSA my neighbours did not understand the disease and why should they but nor did the eye hospital where he attended for cateract surgery I had a leaflet given to me by his Neuro Dr and when I passed to the Dr at the eye hospital his response "I dont need that" and tossed the leaflet to one side. I also feel that not enough thought is given to the financial impact of any disease coming into your life both during and after caring.
I totally know where you’re coming from. The constant having to try to give practitioners a full picture of the patient succinctly and be dismissed is deeply upsetting and I really wish I had made more fuss at the time. My poor husband who smiled at everyone almost to the end, became very puzzled as to why I would be so upset and angry afterwards on our way home. ( Examples… Retinal Eye Screening, Podiatry, Brain Scans, Echocardiogram…)
You are so right in your last sentence. I am still suffering burnout six months on from all the ever changing stresses and pressures I was having to cope with and we were lucky in having an amazing GP and caring outreach hospice nurse supporting us for that final year.
My thoughts and love go out to all those carers past and present, who are on this journey. Xx
I agree entirely. I lost my husband to psp almost four years ago but that last chc meeting still haunts me. I coped pretty well in the years that he was Ill ( you know what I mean, you just get on with it)
The chc meeting almost finished me off. I had kept a detailed diary but the nurse all but called me a liar. Funding was refused, insufficient health needs. Two months later he was dead.
I do wish that something can be done to prevent others going through this.
Love and strength to those still on this cruel journey. Xxx
It's a gruelling process designed to make you constantly just miss out. I've tried 3 times for my mum about to ask again as her contributions are going up 120 per month to the care home. Her pension has gone up with the normal increase. I keep leaving it as she keeps seeming like she won't be here much longer but I've said this for almost 12 months.
The CHC funding is a scam and those nurses are there to look for ways not to pay out. The social worker eas convinced she had it last time and was astounded by the decision. As she was so ill I left it without appealing as I had no fight left in me.
I wish you well in your fight, sending lots of love and solidarity.
It's so disheartening to read all these experiences. It's certainly no better than it was !My husband was manageable at home by me alone. He had a UTI and went into hospital. They suggested a peg - which we had decided he didn't want. My Community nurse had called the ambulance and said to me. Say you want to nurse him at home but need nursing support. He was in a week and they set up a "mini hospital " really.
Marie Curie nurses came in and they were lovely. Some were the ones he knew from the hospice. After 2 and a half months he decided his quality of life was not good enough and stopped eating. He died 4 days later. It's a brutal illness and I feel so angry that you're expected to fight this at a time when all one's energy is depleted.
My thoughts are with you all. Love Jean
I haven’t used them but have found details of Beacon who support appealing the process, they are referred to on the nhs website so maybe able to help?
How to get help
