It is our 48th wedding anniversary today and through the post with the cards, came the letter we have been waiting for since December 2014 ... and guess what - we have been refused any funding, and I quote " it has been established that P does NOT HAVE a primary health care need of a nature to meet the level of complexity, intensity and/or unpredictability required to meet the eligibility for NHS Continuing Healthcare Funding"
I am almost speechless and totally devastated that I now have to find the energy to appeal against this ruling. I am crying as I type this and I feel completely beaten.
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NanBabs
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hi nanbabs mate a very happy anniversary to you may you have many more
well matey im sorry you were turned down by the chc but don't cry there a bunch of idiots mate sitting in there 9 till 5 chairs without a care in the world and think that nobody else has any worries well just apply again and keep on applying until they wake up to themselves peter jones queensland australia psp sufferer
Thank you Peter. I was feeling very low anyway as P doesn`t really celebrate anniversaries or birthdays any more (or anything much as he is so apathetic ), and we had been up 4 or 5 times a night for the last few nights so I am feeling very tired.
I still can`t believe that people who have never met us can make such a huge decision on our behalf.
Sorry, NanBabs. But happy anniversary and keep trying to get approved. I don't know much about the UK health insurance but it sounds better than the US.
Thanks jmhk, it seems that you have to fight for everything despite that fact that we have paid taxes etc all our lives and never claimed any benefits and now, when we need help someone says `NO` ! It is a real kick in the teeth to be told that P`s needs are not urgent enough.
I don't know if this will help as we are in the US but we were denied by our govt or Social Security as Bruce did not qualify for whatever bureaucratic whohaw they could come with. Two years later and a ream of paper worth of forms and interviews, and the neurologist trying to explain what psp was, he finally qualified. Thanks also to my son who was amazing in getting dad some help. Again I don't know too much about CHC but that it's from the gov't....So with that let me tell you to keep a stiff upper lip and try agian. maybe ask the dr to help you.
Thanks abirke, I know I have to fight this and I have fought anything I believed was wrong all my life but I just feel so tired and depressed at the moment.
Thanks Tim, good idea about CAB. I will appeal this ruling but I feel so low at the moment.
Hi, NHS England has provided some funding for initial advice on this issue which might help beaconchc.co.uk/how-we-can-... Beacon also has a number of booklets that might help. It is of course no guarantee but does give you an experienced person to give you some guidance on the appeal process. I am trying to put together a case myself for my wife but having difficulty getting hold of a copy of the original papers so I know how frustrating and disappointing the process is especially when those running it NEVER EVER say what the recommendation is that is being put before the panel. Best of luck and don't lose hope.
Thanks Kathie, I usually am a fighter if I believe I`m right but I am so low at the moment that just getting up every day is like climbing a mountain !
Happy anniversary. But don't let the refusal upset you today put the letter on the mantle piece and deal with it tomorrow. Today is for celebrating the achievement of bieng married for 48 years. And just a little light relief the gift for your great achievement is something optical (new glasses or a telescope). Janex
we are still waiting to hear the result of our assessment . I am not really a pessimist but don't for one minute think they will agree it's necessary .
they need to come a live with us for a few days .
if we are refused I don't think I will have the energy either to complain after all if we did have the energy we wouldn't be asking I. The first place would we ..
Thanks cabbagecottage, I think it was so unexpected because I was waiting to be called to a meeting to present our own `evidence` and we have now been assessed by people who have never met either of us !
It is particularly difficult to take because we are having an extra bad spell at the moment - 4 falls in 2 days, had to call Homeline last 2 nights at 2 and 4 a.m. I have been keeping a diary (on the advice of the Community Matron) and have photos of injuries, video of behaviour etc, etc. All for nothing.
I agree with all of the above Nanbabs. Even try getting in touch with Sebastian Coe - his mum had PSP, maybe just maybe, some higher profile will help? Keep trying, but when you can't please call on your family, you need help too. NZ much the same as UK. There is help somewhere. I know it's hard to fight when you are worn down.
Juliandrog said contact the association. Ask them where to? What can they suggest. Just keep on this site. This illness doesn't get easier .... At least until that help comes. Call on every resource you have to help you push. You will get there. Get the doc to refer you to a gerontologist if he/she hasn't already. Try not to despair - easier said than done in the dark hours I know. But somewhere there is something that can be done. I wish you could go for a breather to George's Exmoor.
Thanks Katherine, I wish I could visit Exmoor - or anywhere at the moment. I feel like taking P to the relevant people and leaving him in their care for 24 hours - if I knew who they are !!
On Nanbabs, I am so sorry! In one way it sounds good, as he Doesn't qualify. But, we both know, that after a certain stage, everyone with PSP, should qualify!
Somehow you have to find the strength to fight the appeal. Get the PSPA involved, I'm sure they know the correct language to use! Have you any official help coming in? Have they done a risk assessment on your husband. If it's states he is at high risk, show that to the panel! Start phoning the District Nurse over all and anything! Get proper help when he falls, even 999. Basically, shout, shout and then shout louder!
Nanbabs, I know you are thinking HOW,!! I don't know, I haven't the strength to even talk anymore, but deep inside, you will find the extra little bit of determination, to not that the b.......ds get you down!!!!
Thanks Heady, your message echoes my normal reaction but at the moment I feel so down that it is an effort to even ring my GP - I have though and I am waiting for him to ring back.
I don`t know how to cope at the moment , let alone when things get worse.
I think we all need to have regular nervous breakdowns and our loved ones put in care! As horrible as that's sounds, but I bet we suddenly have loads of help!
Perhaps, we should start a NB club and plan our next "breakdown". I know we have all talked about having a remote island somewhere hot, but a night in a Travel Lodge would do me!!!
Unlucky then NanBabs, sorry to hear that. Every now and again I have a look at the CHC Assessment Checklist on line. Of the 10 headings listed, ie: Behaviour, Cognition, Mobility, Nutrition, etc., I have only been able to score us B's & C's.. We've been told by those who know about these things that you only need to score one A to go through the goalposts. As Elizabeth's unaided mobility is just about nil now, we can score an A with a clear conscience. Nutrition would score a strong B or shaky A, so we're gonna have a shot at it with help from the hospice staff.
If anyone who doesn't know about the form wants a look, google NHS CHC checklist.
Thanks Chris, we scored Severe on at least 2 checklist items (maybe more, I can`t think straight at the moment!) and I have just spoken to the GP who was as surprised as I was at the ruling. He has not been asked for any input nor have any of the professionals, carers etc who have daily contact so I don`t know what their `evidence` consisted of .
Well, sounds a bit like they're having you over. ... just being dismissive of you. I'm sorry for your distress NanB, I can only offer a smile ans a hug. I see you're probably going to CAB, good idea, they'll take some of the heat off you. They don't pull their punches either.
Thanks, I am giving it till next week to regain some of my normal spirit (I have done absolutely nothing today while P is at daycare) and then I will explore all avenues available to us.
Don't count on it that check list is just a preassessment to see if you qualify for an assessment which you then have to to see if they will even consider putting it before the panel who if they do agree to look at it will then decide in their wisdom if you will get any funding .
Thanks Georgepa, we passed the first assessment and I thought that this one would be assessed with us present. The letter does state that it was `the panel` who decided but on what grounds we were refused I still don`t know.
Hi Nanbabs actually my comment was directed to ChrisF who posted here and is just starting the process - we have our second assessment next week - not holding my breath!
Dear NanBabs....this is my first ever post but,the time is so appropriate!Firstly a huge congratulations to you for your anniversary!How very sad to receive the letter on this great occasion.
Please,please,please do not give up hope....you must appeal the decision.I do appreciate each region is different.However,please appeal.
My lovely mother-in-law(I have been very involved with her care and have read much about PSP) diagnosed in April/May this year with PSP did not meet all the requirements for CHC. We had to go into full mode of selling her house to ensure her nursing home fees would be paid for(£2,800 per month)once she was discharged from a three and a half month hospital stay, to her new nursing home very close to my husband and I.It's very stressful when you hear the news but,low and behold we appealed and the initial decision was reassessed very promptly by the panel on the recommendation that the SALT team had identified swallowing issues.She has been now awarded the full funding....please don't give up bless you.I can only imagine some of what you are feeling but,please be strong.
This site is full of absolutely superb people.I read their posts, including yours and I am so very,very grateful to be able to feel there are others to share the very tough times with.
Thank you Clare, I was so upset to get that letter out of the blue but I am feeling a little better today (not so weepy). I really appreciate your support.
Thanks for sharing your story, everyone seems to be of the same opinion - don`t give up.
It's all been said above. But for my six penny worth: We carers are on a mission, and part of that mission is to appeal against these decisions. As if we don't have enough todo an worry about!
I suppose it all helps to keep someone in a job ! Rejecting folks who really need help is not a job I could do though. I will be appealing the decision next week.
NanBabs felling so sorry, for you, brought tears to my eyes, it is so unfair, as if you have not got enough to deal with, they are terminally ill, they are not going to get better, makes you want to scream, just can't believe the system. What I can't understand these people that make the decisions don't even know the person they are assessing, ridiculous. George's is going through so not holding my breath. Sending you a big hug xxxxxxx
NanBabs I forgot to say happy anniversary to you both, this illness effects us as well, how many of us have been stressed , ready to have a nervous breakdown , who would look after the ones we look after, when you feel so down, you just want to curl up in the corner, and do nothing, but NO we carry on looking after our partners, sister, brothers , parents, and we are expected to carry on, with the government not realising what we do. Xxxxx
Hi Yvonne, thanks for your kind wishes. I am sure `the powers that be` probably do know what we do but prefer to pretend they don`t - it`s cheaper that way !
I know times are hard. There is not enough money to go around, unless they put our taxes up even more. I totally accept we need to be in a queue. But what part of Life limiting disease, do they NOT understand? What part of PROGRESSIVE is so hard to comprehend. Do they really think that we make this up? I know PSP is a complicated disease, but again, what part of complicated, don't they get? These people are suppose to be experts, they are meant to understand about these conditions. If they don't, then WHAT THE ,,,,,, ARE THEY DOING IN THEIR JOBS?????? We are paying for their wages and I bet it's not cheap!!!!
Our claim is still at panel!!! My fight at the moment is trying to get extra help! I telephoned the company who are providing us a sitting service on Tuesday, OK I have missed a couple of calls, but I am still waiting for them to ring to make an appointment to come and see me. This morning the girl said she would call between 2-3, to arrange a time, nothing! Honestly, again, I am paying for this! Surely there isn't a company in the world that doesn't need more business, obviously I am wrong! I am trying to get someone in to shower S in the mornings, and but I need it to be at a certain time. Apparently, this isn't how it works. They turn up, when they are ready. Wish we could run our Company like this. Make life so much easier. Don't think our customers would like though, so WHY WHY WHY, do we have to put up with it????
Thanks Heady, as usual you sum it all up beautifully. When you have been self sufficient all your life, worked for yourselves and asked for nothing it doesn`t come easy to ask for help, then when it is refused so dismissively it feels like a double blow.
I will keep you all updated with progress - if any !
I'm crying for you too NanBabs, it's just incredible. Pick yourself back up, and fight it, get the doctor to write and anyone else that knows and sees you regular. We haven't got that far yet. Next week we move house , forced to as could get no help with garage conversion or anything else. Have had to sell family home for a bungalow. Never claimed anything in our lives. Put it aside for the weekend and out of your mind, then Monday get cracking , nag and write , write and nag, phone and phone , bombard everybody , you have it in you , much love
Thank you so much for your support. I am at the end of my tether, seriously considering long term care, only to be told P is not bad enough ! How much worse does it have to be ? I feel I have failed anyway because I just know I can`t go on doing this, then to be told in so many words ... it`s not that bad !!!
I will of course do as you say, phone, write and nag, nag, nag but it feels like a monumental effort just when you are at your lowest ebb.
It's probably inappropriate to say happy anniversary now, a day late but instead I hope you find something to lift your spirit today. Do you keep a note of how many times you are up in the night and the reason and of how many times he has fallen or you have saved him from falling during the day. If he falls and can't get up alone, don't help him, dial 999 and keep safe the form the paramedics give you. The panel only have what is in writing before them on the table so collecting evidence is important. It is appalling this has been going on since December 2014 but no doubt your husband's PSP has progressed since then so hopefully when you have enough energy to appeal, things will go your way.
Thanks NannaB, it is never too late for best wishes, whatever the occasion.
I have been keeping a diary since last October on the advice of the Community Matron and I have kept every appointment letter, follow-up letter, records from any ambulance callouts, hospital overnights (from falls), Homeline calls (local service to help with falls 24/7 for which we pay) even photographs of injuries or damage caused by falls (P went through the TV screen one time !) etc etc some of which go back about 5 years now. Sadly, I even keep a record of bowel movements !!
Sadly, we never had the opportunity to present ANY of our evidence that`s why I was so shocked. I was expecting to be called for a meeting or even for the panel to meet `P` in person then maybe our evidence wouldn`t have been so necessary. I would really love to leave P in their care for 24 hours to see if they still had the same opinions then !
Hi NanBabs. I am so sorry to hear of this stressful stuff you are going through. I have been trying to reply for 2 days, internet log on problems!
You will probably hold your hands up in horror at this. YOU CAN REFUSE TO BE A CARER. I am at the stage of researching what comes next for F and I. He is declining very quickly and now we have been told its probably not PSP but a combination of CBD and Frontallobe. My research has found the newly enacted Carers Act 2014. You do have the right to refuse to care. I know this is probably not what any of us caring wives/husbands/partners want but if it means you keep your sanity and energy to give when giving is needed then go for it. Or simply explore the possibility with those people who are taking your choices away.
I had similar problems when I was full time carer for my late mother-in-law. She was very elderly and needed various specialist bits. I realised too late that as long as I was there and saying to NHS and Social Services that I could provide they backed off and left me to it. (The caring did in fact nearly kill me, I was dangerously ill and only found out after she died and I collapsed.) This even went as far as not getting so much as a viewing of the local authority care home and having to pay for her care privately. If she had no one then the state would have to have provided everything.
The new Act is in early days but it is there for us and as carers we now have LEGAL rights. It is exhausting and that can be the most difficult time, not able to think clearly. A very kind and empathetic lady said to me the other day "You need to find your own identity again". It floored me because I realised that I have become just the PA/Nurse/Cook etc and the me that used to be so confident and got the results has been plastered over, erased. Find the individual YOU. Think of times past when you have achieved something good and remember who that person was. That way you are so much more to your loved one. I hope you resolve this one, my very best thought are with you.
Thank you so much hellebore for taking the time to reply.
I am gradually recovering some composure and I have canvassed the opinions of our GP, the daycare supervisor and the manager of the last respite care home that we went to 3 weeks ago. They have ALL said to appeal and that they will certainly give letters etc on our behalf.
I honestly didn`t realise quite how exhausted I am until earlier this morning I went to have my hair cut - the old woman in the mirror was me !!!!! I have always felt `young` in my mind but it was a shock to see quite how tired and stressed I looked. You are so right about finding the old YOU !
The Carers` Act is a new one on me but anything that adds weight to our appeal is very welcome. I will investigate it further, thank you.
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