OK Guys and Gals out there - I am setting out on the dreaded road to appeal the decision to turn us down for funding , and I need the benefit of the experience of those who have trodden the same tortuous path ! So far my OT and Community Matron say they cannot have any input it must all come from me but they don't say what . The letter I got , stated if I wanted to appeal I had six months to do it in and gave the address of the appeals manager .It then went on to say if I had a formal complaint I could put it to another a different address or if I wanted an informal complaint I could go to yet another address or phone the patient liaison service which I did . The lady there said "oh send us everything and we deal with it " and gave me another address .Wasn't happy with this and sent an e-mail to the appeals manager (first address - hope you are all still with me ) asking what format I should use for the appeal and what evidence and supportive evidence from doctors neurologists psychiatrist and geriatrician consultant I could use . Needless to say that has not yet produced any response but early days , as we all know the wheels of bureaucracy grind exceedingly slow . However , in the meantime any advice from you good people would be most welcome . I don't know if there is a national procedure or whether every health trust has its own format and rules . I do intend to also approach my MP and write to the Minister for Health and point out in no uncertain terms that the whole process is flawed and is a post code lottery - in fact my community matron said that it often depends who is sitting on the financial panel that day .Perhaps we should all write to him because I doubt he has a clue what is going on .- I am not sure he would care but if we all make enough noise perhaps he can be made to care .Time to man the barricades and fight the cause of PSP sufferers and their carers .I am determined to fight this one all the way - not just for me and Veronica but all of us who bureaucracy can dismiss with the stroke of a pen without the least comprehension of what the illness involves for the .
sufferers and the huge strain it puts on the carers.
So please let me know your experiences - good or bad and not only will that help me but also anyone else in the same boat and will give me ammunition for my campaign - thank you in advance
Georgepa
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Georgepa
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Sorry I cannot be of any help on this. But I certainly do wish you the very best. It sounds like you are on the right path and hopefully some of these good people will be able to guide you.
Oh Georgepa what a nightmare. Yet again I do not know how you UK-based people cope with all the red tape. I am now so worn down with caring I can't summon the energy to do much of anything outside the daily round of cleaning, feeding and trying to keep C entertained. Annual sending of Christmas cards and letters looms and keeps getting postponed. We still have a dwindling group of very elderly relatives (in their 90s) in UK who do not use the internet so should receive a festive communication, but it my not happen this year. And if I can't manage to produce the festive greetings I do not know how you will complete all the jargon-ridden form filling necessary for your appeal. But actually I do know you will manage it and have a sneaky suspicion you will succeed. Stay strong.
Georgepa, having just posted a comment I re-read your original post and especially your mention of 'evidence'. Just send any and everything you feel is relevant, the more the merrier. Compile a huge file of evidence, bigger the better. Is it possible to video V in her struggles to eat and speak? If so include it on a DVD. Box it all up, contact your local newspaper and get them to write about your appeal. Write to your MP and Minister of Health and put copies of those letters in the file. Whilst professional health workers may not be able to give supporting evidence I think you are involved with organisations like hospice or carers from charities/private companies who may give letters of support to your application. Get yourself checked out for stress/physical damage due to demands of carer role and include that. Clearly I have never seen a CHC application form but all such forms usually include an 'any other information' box which gives you a wide range of opportunities. Finally, you may have six months to do this but that time will fly especially with the festive season looming. So start by planning what you are going to do and create a timeline setting your own deadline for submission of appeal. As I am sure you want to get it done quickly, why not go for three months from now as your submission date. Make a list of everything you think you need and aim to acquire it on a weekly basis over that three months. Of course other issues will arise during acquisition, and other people will write here recommending things I don't know about, so a few tasks per week planned by you will grow. Just had another thought. Do you know any retired health workers who may be able to produce a statement of support? Have you been to your local CAB - if you have one? i am sure there will be someone there able to give advice on the questions you are asking. In fact your first task could be to go CAB prior to creating your plan. And if anything else occurs to me I will post again. In another life I wrote lots of applications for funding and, I believe, it is all the same game regardless of the purpose of the funding. Good luck.
Hi - on the original application did she score lots of highs or severed? If so she should not have been turned down. If she didn't score high enough why not?
We got CHC for a friend mainly because of a wonderful social worker who observed for several hours in a hospital setting (following one of many falls) exactly what was happening. Eg that she would jump up (she had a fall in hospital) that she stared at her food as though she didn't know what to do with it etc. You know all the things. Also important was she had lost weight.
Sorry to go over old ground but I'm constantly amazed at how many people are turned down for CHC when symptoms are so glaringly obvious!
They are a danger to themselves, disease is unpredictable; their every need has to be guessed at etc.
Enough ticks means they should get it. Do you know on what grounds you were turned down? Because sure as hell she met the criteria if the form was filled correctly!
Yes she scored enough highs for the multi disciplinary the committee to recommend funding , it was the final financial committee which rejected their recommendation and turned down the application .. Who sits on that panel is anyones guess .I am sure the whole thing is to do with hard pressed budgets - if the NHS can palm you off onto the County Council it saves them a lot of money and the county council can means test you and minimise their outlay net result government in one form or another avoids paying out .A friend who is an international war crimes solicitor and her husband who is a high-powered company solicitor based in Singapore have offered their services should I get stuck . That could be interesting - North Devon Health Care Trust taken to the European Courts of justice !
George, you don't say if you have received their report, stating reasons for not awarding CHC. You ARE entitled to see this!! Find out which sections, you failed to prove the point and let us know, so we can all put our pennies worth in, to see if we can up the risk!
No I haven't seen the report they just put there was no need for primary health care - it was the next thing on my to do list for Monday also to get the submission that my OT and community matron put in . I have been on the internet and Googled CHC Appeals and there is a lot of stuff there which is very helpful - specimen letters etc etc and there are also firms which will put the whole appeal together for you and represent you at the panel which very well may be worth looking into . It might cost but it might well be worth it .
I was given my report and I was told that I would see the report before it went to panel. That didn't happen! The assessor did tell me, I would see the results, which ever way they went!!! Demand that report, everybody will need to know, what part of PSP, they didn't understand!
I'm sure I got CHC, because of where I live. There was a cluster of sufferers, a couple of miles away. Major interest, but it turned out, that the local doctors receptionist had PSP, therefore all doctors knew first hand about the disease. I'm sure that has helped, because the panel have come across PSP before!
It's the old, old story George, you are going to have to educate them! Broom attached to, you know where, comes to mind, I know!!!! But somehow, you are going to have to find the energy and time from somewhere.
I am with you, every step of the way and prepared to help, in any way you think I can!
I haven't had to go down this route yet but am flabbergasted at the complexity of the procedure and the postcode lottery of if you are likely to receive the funding. I wish you all the very best in your appeal. Would the local newspaper be interested!
Georgepa there is a lot of good advice from joeglad and pattz. As a former CAB volunteer I can only stress you need A&E (allies and evidence) sorry weak humour. But you need to put in formal complaint as well as appeal.
Gather your evidence and if you can scan it digitally into your PC you then have no problem sending huge files of evidence to all and sundry and have the originals so they do not disappear.
Though your matron etc say they cannot help get them to provide you with some written assessment. Record every choke, fall (actual and saved), missed meal, if she goes rigid and drops uncontrolled when sitting down on toilet/chair count it as a fall. Bureaucrats love data so drown them but equally there are words and phrases that count and other similar ones that do not (eg do not use stumble or stagger use unsteady on feet and recovered fall)
To find local pro bono solicitors try CAB they should have a list may not be local to you but most now operate email.
Best of luck getting your MP on side, JH though more interested in junior Drs and NHS waiting times.
Do not give up you deserve the funding and help to support your wife and yourself.
George sorry to hear you are going through all this, it is horrible, we keep a diary, and I sat and copied it all out, it took ages to do, and I also wrote my own assessment, which was 3 pages long, took us forever, it you private message me will go into more detail Yvonne xxxxx
Georgepa, I would recommend you look at the `Care to be different` website which deals with CHC in great detail. There is a LOT of reading but hopefully you may find something to help your cause.
I know how bewildering it all is because we are going through the same thing at the moment, one step forward, two steps back - at least that is what it feels like ! Obstacles placed in your way at every move.
After we were refused CHC , I contacted PALS who gave me the name of a contact who eventually wrote offering me a chance to meet and discuss the appeal and supply my own evidence (I have gathered letters from professionals, photos, videos etc). The contact we were given to liaise with the panel has now gone off sick and for the past month they have been trying to allocate her cases to another nurse, so I contacted PALS again and they have promised to get back to me by early December (our appeal was rejected in September). We originally applied for CHC in December 2014 !!
I am having help and support from our local Carers Centre who have provided a specimen letter to fill in with your own details for the appeal and then helped me to fill it in.
The nurse at P`s nursing home told me yesterday she couldn`t believe we had been turned down as` he ticks all the boxes`. She told me to be persistent and assertive, phone people, `be loud` ... and complain !
I think every area is slightly different, although when I challenged the procedures the CHC panel had followed with my contact, she told me curtly, " we follow the national guidelines so it`s no use complaining".
George I contact you the other day Mike was in hospital with a UTI infection which was very serious he was in a week, Then in for a peg which could not be done, came home with a UTI infection and chest infection Then I had OT,Nuro team and community matron on board, Mike can not feed himself walk with out some one helping he has problem seeing and is incontinet can not talk other than yes or no food is mostly soup, drinks are thickened he has patches for saliva it is a terrible to,watch a love one going through this.I hope you get chc
Georgepa, sorry I can't help out as I don't have any experience of this but I wish you all the luck, will be thinking of you and watching out for your posts. Nanny x
Hi again, everyone is suggesting keeping a diary, of all falls, etc. Just thought of another thing to note, especially now. - keep a record of V's decline. Talk about the progressive nature of the disease and show examples, where this is happening. A couple of months ago, S could still talk a bit, with adrenaline pumping through, I.e., a visit from the CHC assessor! But now, he has virtually lost his voice. I am sure, even since the last assessment, you will have a few examples to show any deterioration!
O.M.G I am in a whirl, G's Matron sent me a text yesterday to say she is visiting on Tuesday, to complete the CHC first stage forms, and could I gather some snap shots of resent events, I have no idea what she is talking about, so I will have to ring her on Monday. Unless all you good friends can help, I am not much wiser after reading Georgepa's Replies,
She All ready knows in the last month he has been in Hospital twice, catheter fitted, then bladder infection,plus 2 falls. Is it all worth the effort ? Or am I just worn out.
Georgepa send me a little bit of your energy to help me carry on.
Its on its way and just write up a kind of daily diary with all your observations of of everything from falls to behaviour anything you think might be relevant .
Hi we got CHC for mum on the second attempt we had the staff at the day hospice behind us who did wonders to back out application . Risk of choking , falls and pressure sores seemed to be important x I wish you all the best luck Louise x
I have no advise to give, but I wish you the very best in your fight - maybe it's been said in the posts above, but if money is all they care about - there should be a way to show that it would cost them more money if they DID NOT give any funding... this sounds fairly abstract but maybe it makes sense. Also, if they can see you are not just going away quietly, that you will keep pushing this, they may reconsider. Give them as much work as you can, be the wheel that needs oiling.. the thorn in their side etc.. whatever expression applies! I'm with you!
Thanks Lieve - I certainly will . I have been on the internet and there are more avenues to explore if they reject the appeal but my first task is to muster all my ammunition .
Hi Georgepa, I have just read the site, caretobedifferent.co.uk .....What are the different stages of NHS Continuing Care Assessment and Appeal. It's quite interesting and may help.
Sorry to be so late getting back to you but I was hoping on Saturday to meet the PSPA Specialist Care Advisor that covers your area and to ask for her help. For personal reasons she did not make it to the Bristol Family and Friends day but I contacted her today. I gather, for PC reasons, she cannot be pro-active but said if you call the PSPA 'helpline' tel. 0300 0110 122 and request assistance; she will have primed them to expect your call and would be pleased to help where she can.
It's a disgrace that getting CHC should be made so difficult when you are hard pressed simply dealing with the daily grind.
Well Done Jerry! George, Jane Stein is a lovely lady. I have met her twice now. She phones me regularly, always seems to phone, when I am in the middle of some tearful crisis. Hopefully, she will be able to give some good advice! Make sure you phone her!!!!
Thanks for that Jerry I did call the help line today but no one was available and I was promised a call back but it has not materialised yet . I have spoken with a company which specialises in this area and they have a very good record on appeals . They say that there has been a recent clampdown by the NHS in all areas in an effort to save money . They hope by refusing you will go away and go to your local council . The company will put a professional legal and medically backed appeal in for you- it costs but really that would be recouped in a couple of months compared with what we are paying out as we are self financing .So I am looking into that avenue as on re reading our original submission I think there are some naive errors .
Sorry, that's not good. I've emailed the PSPA and asked if they will move you closer to the top of the pile. I understood from Jane that she is ready to help as soon as she gets the go ahead. It's wrong that you should have to part with hard earned cash to get something you are entitled to. The two professions you cite are those I'd least like anywhere near my pocket.
Have done so already - she is at a clinic today so is contacting me tomorrow . Apparently she tried all yesterday afternoon but there was nothing on my mobile and I had a carer in for couple of hours yesterday and they didn't say she had phoned so I don't know what happened there. Still not to worry I am are she will get hold of me .I got a letter back from the North Devon Trust today - had e-mailed them saying if I wanted to appeal what was the procedure . Their letter assumed I was appealing now and gave me 20 days to gather information to put before the Cluster management?Lead nurse who will review everything and try to resolve it before appeals and if she doesn't then a further 20 days to go before the appeal panel .All I asked was about the process so I feel they are railroading me into hasty action . I won't be so they can think again .!
Try and keep calm, they are probably trying to rush it through, so you get the funding quicker. Have you had their report yet? thats what you need, to know which areas you need to re examine. Once you have that information, we can all put our thoughts and try and find the "correct" wording to pass.!!! It's like being back in school, all these blasted tests they keep throwing at us!!! You wouldn't think it was to save the government money, by trying to look after our loved ones at home!!!
Deep breathing Geroge, big glass of wine at bed time, (or before). You will win!
Spoke with the OT who has had the report back and some strange discrepancies . When the assessment was first submitted they queried medication and skin and accepted the rest . Having revised those two categories we resubmitted and they rejected it on two different categories ! i.e. shifted the goal posts . However OT and community matron are taking this up with their line manager. I am quite calm just want to kick a few a***S.
Georgepa
Ps They have just forwarded me the full submission I had only got a draft one
Have you got someone to refer you to Marie Curie yet? It gives you two hours sitting service a week for free! Much needed. ALSO, because they will ONLY accept people with Life limiting illnesses, it does give the panel another consideration. I.e. The patient is ACTUALLY ill and you are not telling porgies pies!!!,!!!!!!!!!!.
I know, I know, you couldn't make it up, even Shakespeare, would struggle to come up with this plot. Although apparently Charles Dickens did describe a character, that sounds very much like PSP,
Let me know if you need me to hold anyone! While you have a "little chat" with them!
Yes -I have got Marie Curie nurses between one and two nights a week for all night stay awake care depending on availability .That's why I feel fighting fit and ready to take the so and so's (being polite tonight) on . Our community matron took pity on me - my black eye mascara helped - and set it up .
Gosh, you must have had a good nights sleep!!!! Feeling fairly fresh myself, two nights on sleeping pills, working wonders and my care package has started. So S has been showered every day this week! It's surprising, how having that little job done for me, is making a big difference. I suppose, because it's soul destroying, having to do these things for your loved one!
Your community matron is a treasure! Having a night service from MC, is very special!!! And those b######## at CHC still turned you down. They need shooting!
I have kept a diary too- we scored 4 highs on the assessment 5 moderates and one low with one no issues . Supprting info from all the right sources but apparently not enough .
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I'm with you! 
CHC
