Everyone with PSP / CBD (my father) should be supported by CHC yet the stress we have witnessed as a family and I read on this forum is both unnecessary and cruel.
Can a permanent link or topic be set up by the admins for this topic?
How can we create a working document / checklist that can be updated with advice on the CHC process - being armed with the knowledge and information has been paramount YET the process to get CHC and continue to receive it has spun our entire family into areas of unnecessary stress / crisis.
When someone has a terminal diagnosis why should you have to fight for end of life care?
My father has CHC, he is at the stage he can barely talk. My poor mother provides him with exceptional care, he only has his mind left.
We’re in the process of battling his reassessment as the powers that be, believe that he no longer qualifies …. On the end of a phone! .. he’s got much worse since he was awarded via Fastrack in May where at the time he was bed bound with nursing needs …Wow, do they think he has made a miraculous recovery
We had to as a family learn a lot, battle a lot and were thankfully well informed as my partner was a caseload holder and led CHC assessments for over 10 years in community nursing where she was for 20 yrs she left to go to practice nursing as community nursing is falling apart which is very much a postcode lottery - even with that level of knowledge it’s no easier please believe me.
We initially tried Beacon however they didn’t add any value apart from being paid to gather evidence etc and if you don’t have the time or support then perhaps that could help you. They don’t have a secret phone number to get you CHC.
What we could all do is perhaps pull together a list of what needs to be done, by whom and how to build patient advocacy for our loved ones.
It’s not just understanding the DST tool - it’s about triggers, how to get the supporting evidence needed which is often lacking vs expecting it to just happen.
The definition of my fathers MDT is very different to what the admin exercises of NHS believe it is - we care and we need to make other people care as well to drive the outcomes that our loved ones deserve.
Just some ideas given the number of CHC requests and that for those who have been through it, your knowledge really can help others starting this horrible journey 🙏
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Harshacceptance
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Hi Harshacceptance, you raise a thorny subject close to many hearts. As you are in the UK please contact the PSPA Helpline (pspassociation.org.uk). The PSPA is gathering information on the difficulties being experienced in applications and reassessments. The Health Care Navigator for your area can also assist with your current difficulties All my very best wishes
hi, gosh that’s worrying to hear that CHC can be withdrawn. Please could you give some idea of their reasoning - why is CHC being withdrawn when your father’s condition has worsened? What is MDT? I hope you can get it sorted and would be great if the PSPA could help fight these battles. Our mum’s care at the moment costs £10,000 per month so would be impossible without funding.
My dad received his CHC via Fast track - it was complex and stressful to get to that point.
They have a reassessment from Fast track and the CHC team called my mum and clearly stated they do not believe his needs now qualify for CHC. We had a very poor experience of the CHC team, first time around - the palliative nurse overruled them to get the fast track - dad had zero mobility, catheterised and aspirate pneumonia.
His care costs are the same so you can imagine the panic this has set in to an already bad situation.
Once we find out more at the reassessment meeting I will report back as we're assembling his MDT to ensure all the evidence is available. The CHC team wanted to do this on video, my mum has told them they must do this in person as how can they asses his needs remotely and also dad can still hear.
thanks for posting this - I agree this is a crucial topic and as much help as can be made available is essential. My husband was initially awarded fastrack CHC back in July last year. It was reviewed in October - after three months( as expected). he no longer meets the fast track criteria but the nurse who reassessed him was very helpful and did everything that they could to help me to identify the evidence that was needed to meet the criteria for complex care. I had been through the checklist beforehand and identified every little thing that I thought might be significant and because I had so much evidence this helped with the positive outcome. I keep a detailed record of everything that happens on a day to day basis . The assessor said what I had done was really helpful for the decision making process and to carry on doing so as my husband’s CHC will be reviewed again in three months (presumably it has now been awarded under the “complex care” criteria instead of fastrack). I think my previous professional experience as an auditor and NVQ assessor helped me to navigate the process of identifying evidence to meet the laid down criteria. It looks daunting at first - but perhaps if folks on this forum who have CHC funding could share some examples of how their circumstances met the criteria that might help others?
My wife has PSP and is becoming increasingly dependant on me and the rest of the family. I have never heard of CHC, so could you please tell me what it stands for.
Hi - Continuing Health Care (CHC) - in terms of the detail behind it you can find a wealth of information and its signposted on the NHS.
I would encourage you to research it, continually gather evidence on all your wife's interactions with health care professionals - GP, Neurologist, DNs etc
It's a godsend however there are lots of "process gates" to get through, which is where it becomes very hard
Hi, I can post more in future but a few pieces of info for now. Firstly do look at the PSPA website they have info on CHC - continuing healthcare funding ue nhs funded care. If you ring the helpline they can also explain more. Secondly if you put Chc in the search bar and filter for PSP you will find lots of posts about people experiences of CHC. Also scan down this page ... as your post is about CHC at the bottom of the page it shows related posts all about CHC, if you click on one, you'll get useful info abd it will lead you to many more posts. If you look up my name Millidog you'll find I've posted about CHC. Also look at Trevor 1 posts he posted lots of good info. Google CHC again lots of valuable info. Key things. Social services may support with care but it's means tested and if the person has any form of savings they'll pay. ChC is funded, you have to prove it's for a primary health care need and it's a hard process but doable. Stage 1 is a checklist, if successful you progress to full assessment which us a very detailed interview you need to present evidence against @ 12/13 criteria such a mobility, cognition, behaviour, breathing and much more and 4 additional key areas including intensity, unpredictability etc. You need detailed evidence, worst days and it's good to have medical letters, need fir medication and assistance and to have health and medical support at assessment. Some people don't initially need this as they fast track but may then have to do full assessment if emergency need others go through this process. If awarded you can have care at home or in nursing home through care co ir personal budget to get own carers. You will have an initial 3 mth review to check care in place meeting needs and then an annual which I understand is like a full blown assessment to see if still needed. .ours due January 🤞 Hope this little bit of info helps xx
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