CHCRears it’s ugly head again

[maggie4]

Just had chc review. Prepared as advised, did lots of research but surprise surprise Pete is no longer considered eligible. Not because of the way his condition has changed but because I don’t have evidence. A warning to everyone, continually make a nuisance of yourself. I generally self manage the changes, incontinence, pressure sores, falls , problems etc. But from now on I shall be phoning someone every day with every change and new symptom. They will soon be avoiding my calls. Just a warning to you all, it doesn’t pay to just get on with it.

[Kevin_1]

Hi

So sorry to hear that.

Miserable.

BUT, it is their duty to find the evidence. The fact that you did not recall incidents, dates times, should not go against you. Some people can barely write their own name. Should all such folk be excluded from CHC?

Appeal time I'm afraid. Also do you have carers coming in? If so they should have contacted the care agency along with all professionals involved.

Struggle struggle, never ends does it!

Hugs to you... Come back if you need more info.

Kevin

[Servena03 in reply to Kevin_1]

Kevin, we had our CHC last Monday, 2hr 10min questioning, accompanied with a lady from NHS dept, and district nurse,whom I didn't know was coming. Thankfully I had my daughter there who had read your 14 tips, thank you for that info, ideally helped, I was exhausted after 1 hour, John was on one of his good days, somehow was able to talk them , yet I

can't hold a conversation with him, his voice being so low and slow. When she finished she said to me Jean are you feeling ok, anything you like to ask, I retorted I still don't understand what you're hear for, she replied for your funding needs, But what funding!! you see I have all needed equipment from my OT, the hospice is sorting out John's needs to keep him as comfortable as possible, district nurses are trying to get me supplies of toilet pads, (I have been buying them, for the last 4 months), I don't know what you can do!! Admittedly, the lady from NHS has said as carer I would be entitled for help, whilst I have my hospital appointments (I had a melanoma cancer operation last September) , last weeks hospital appointment cost me just under £100 for care hired for 4 hours,plus 2taxis £28, so I would be grateful for that as I will have more regular visits. I haven't heard anything back yet, if they say I haven't got funding what does that mean, will they be taking away what we already have? My daughter was great took over most of the questions, she understood more. How anyone with PSP has to do all that on their own, begs belief.

Thank you for all your support and help, Jean.

[Kevin_1 in reply to Servena03]

Hi Jean

That sounds like a gruelling meeting.

I am so sorry to hear that you are dealing with a melanoma as well as caring for John.

The person from the Continuing Healthcare Team would have been noting down scores to the twelve different areas of need. They would have known the decision by the end of the meeting unless they were still waiting for a letter from the G.P. or something.

I would telephone them and ask them whether they are recommending CHC funding.

Strictly speaking only their funding panel can approve the funding, but that same panel are not allowed to gainsay the assessors decision unless their information i flawed or incomplete.

I always ask at the end of the interview, but I can quite imagine that by that time you must have been exhausted.

Wishing you both all the best and doffing my cap at you in admiration.

Kevin

[doglington]

I'm so sorry.

It makes me so angry that when we are at our most vulnerable we have to fight. If he already has it can they prove he is no longer in need ?

I agree with Kevin that the most vulnerable carers will fall by the wayside and its not right.

My husband was in hospital and they set up palliative care before he came home. I had previously managed alone. Do they say they will no longer pay for carers ?

big hug from Jean xxx

[Hidden]

Dear Maggie, my heart goes out to you as you try to work with a system meant to ASSIST individuals.

It is a shame that when we are busy caring for our loved ones... we also need to put on our armor to do battle with uncaring employees who act like the funds are coming right out of their personal bank accounts.

On a brighter side there are some employees who truly serve to the best of their ability. I hope one of these kind souls knocks on your door & answers your phone calls with a smile. Sending Hugs... Granni B

[NannaB]

Another battle to fight, as if you don’t have enough. I know it’s time consuming but I kept notes of how many times my husband woke in the night and why, how many times he fell, how many times I stopped him from falling, how often he need changing etc etc. I had all eventualities in a list and did a 5 bar gate system. Everything was in a file with A&E reports after falls, ambulance reports, in fact everything I thought would be useful to convince the powers that be that C needed continuous care. Once I got organised it didn’t take long to keep up to date. I stopped during the last year as I was told after the 3rd year annual review that it wouldn’t be taken away. I started keeping notes as soon as I knew what CHC was as it uses a similar process as we used to give children with special educational needs a statement of SEN. One of my jobs was to collect as much evidence as I could to convince the anonymous panel that the child needed it. Without evidence the application was turned down. So I did the same with Colin. I presented my evidence at each review. The whole system is very unfair and needs a complete overhaul. As Kevin said, some carers are less able than others and we shouldn’t need to provide evidence but until things change, if you can, gather and file as much as you can.

XxxX

[Tippyleaf]

This is dreadful as we approach hubby”s first review I have started to become anxious and I can see with good reason!!

I do hope you appeal and are successful

Sending love and hugs Tippy

[Katiebow]

I can feel my blood boiling up again every time I read that someone on here is struggling to get initial CHC funding or up for review. I had lots of support when applying for Bens funding, the hospice, the speech therapist, the Parkinson's nurse all helped with filling in the detailed application and added extra points as well. I hadn't kept a detailed diary ( I'm rubbish at maintaining diaries, always willing but often forgot during the busy day of PSP but had spent lots of time trying to understand the requirements and did have lots of paperwork with me) The Parkinson's nurse sat and supported me at the interview and reaffirming some of the details I had to express at the gruelling 3hr interview. You should never have to face an interrogation such as this at such a difficult stage in you and your loved ones life, I was shredded by the time they had finished but had a phone call the next morning to advise that Ben would be funded as from the beginning of that week, I wept with relief. As review time approached I became more and more anxious that the funding would be removed, well over a year went by and heard nothing, ( never had the three month review you are supposed to get and then annually) he died just over a year after receiving funding and before they got round to the review. Best of luck to everyone in this terrible situation, you should not get having to endure this abominable situation at such an already extremely stressful situation. Being given CHC funding and then have it removed cannot be right, our loved one needs more and more nursing as time passes and you cannot do it without help, who do they think they are kidding. How can they sleep in their beds at night ( I suspect they can't but are told to make it as difficult as possible and rely on people not knowing their stuff or challenging funding rejection) my heart goes out to you but please try to find the courage and strength to fight the decision and getvproffessionals on board to help you.

Much love

Kate xxx

[Chrisdebbie2]

Please keep fighting.we have been finalky granted chc funding after 6 1/2 years!! And dad having passed.we proved it had all been handled incorrectly from the start.it makes me so sad and angry that it truly is about money and targets.dont give up its so wrong to have to fight like this when they know the loved ones are so tied up caring for their family member.check all your domains again and call pspa for advice too.

[racinlady]

In the U S hospice operates similarly. I found early on that to keep your loved one covered, you need to share the problems you're dealing with with them or they don't know about them. We lost hospice for awhile because the caregivers at the care home had told the reviewer how well my husband was doing while glossing over all of his problems that they were dealing with. When I asked them about it, they said they were proud of the care they were giving him so they didn't want to complain about the problems they were having. It was a teachable moment for all of us! I appealed the decision and lost my appeal because my advocate (provided by Medicare-they don't let you be your own advocate) thought my husband was in hospice due to some eye problem because of the supranuclear part of PSP! Needless to say, I lost my appeal. Three wks later he was hospitalized with congestive heart failure. That was enough to get him back into hospice.

If you share the problems, they are documented by hospice and are there for the reviewer. Likewise, it is wise to call them occasionally as you're encountering problems. It is no time for stoicism. You really don't have to overdo it, but they need documentation or they can be in trouble with Medicare in our case or CHC in yours. I expect CHC has similar requirements--everyone answers to someone. It seems like a lot of us learn this the hard way.

Maggie4, I hope you can get your problem resolved as quickly as we did. I still remember how I worried for the 3 wks we were without hospice support. I felt like a ship without a rudder. I don't know if I actually realized how much I relied on their support until it was taken away. Good luck to you.

Pat

[maggie4 in reply to racinlady]

I’m unlikely to loose home Carers but the decision could impact on the respite I receive and have implications for the future. Thank you everyone for your very kind thoughts and suggestions. I really do appreciate you all. Too tired to thank individually but you all understand that😞😞