Hi all, my dad had a visit from the Macmillan nurse yesterday. In conversation, it came up about the battle we'd had with Staffordshire CCG to get CHC after dad's fast track application. I told her it was unlawfully refused, and we got it overturned. She was amazed. She's having this experience again and again, and had no idea that fast track means it can't be refused. She hadn't heard about Beacon either, so I soon put her straight on that one! Hopefully more people can be helped now. It never fails to amaze me how badly the system is run. On another note, we were told by the CHC that my dad could ONLY get 4 visits per day and absolutely nothing else would be paid for. The Macmillan nurse applied yesterday on dad's behalf for weekly night sits and was approved straight away. It's no wonder people get confused!
I'm still having a right battle to get the "Just in case" meds in place for dad. I've been asking now for 4 weeks since he came home. The neuro nurse said the GP should do it; the GP said the Macmillan nurse should do it and the Macmillan nurse said it's the GP's responsibility. So we're back to square one. Now waiting for the hospice consultant to come out and assess him. I can't believe how long everything takes - surely there should be some urgency in end of life care?!!
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sasmock
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We were really lucky to have a great system whereby on release from hospital the hospice palliative care team were so efficient.
Before Chris came home the special mattress was in place. The emergency supplies were with him. There were three daily visits to care for him but I had a 24 hr phone no. and nurses would call whenever I needed. Actually, he didn't have any pain or need a great deal extra but it is so necessary to know there is instant back up if anything happens.
Until you have been there it is hard to realise the responsibility of having such a dependent patient.
I know its exhausting for you to feel you need to think of everything and prompt them. One of the things I never got used to was being asked " are you getting all you are entitled to ?" But no-one could ever tell me what it was. Its a huge learning curve.
Everything seems to be a minefield.... as soon as fasttrack Funding was given all the just in case meds’ were delivered by the DNs. I continually hope we do not have to use them. Jxx
I have no idea what fast track funding or chic or any of this stuff is. I do wonder how ,I have help David could have been entitled to had I have known. The more I read, now that I have time to, the more I realise I struggled on alone when There may have been more help out there. but no one offered it to us.
We did get three double up carer visits per day, and that worked really well, but I only discovered that we could have a fourth a week before he died. Having someone to take David to bed and do that part of the day would have made such a difference to my state had we have got it in place a year before!
It really is quite hit and miss, and depends on how well informed your local people are. The counc people who came out to us were pretty good, but I a, sure even they missed a lot. They wer hot on the adaptations, hence us getting the lift etc, but nowhere near as hot on the personal care side. The care company providing the carers were quite messily organised, but the carers the,selves were generally superb, and regularly went beyond the normal to help David, for which I will always be grateful.
I think the moral is to keep shouting for help, whether you need it or not, as you will at least find out what is out there ready for when you do need it!
It never fails to amaze and upset me the way we have to fight for everything, so many people miss out on the support they are entitled to. I realise some folk don't have the knowledge or capacity to get the help they need and if I hadn't read all the info on this site nor would I have known. It's about time there was common ground and they should be informing you once diagnosed to your entitlements. Said my piece now but still feeling angry at the injustice.
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Has anyone else had this experience with chc? 
Chc appeal
Continuing Healthcare Farce
