I am applying for CHC for my husband and we are at the second stage. A "team of professionals" will be coming to make an assessment.

[denmob]

I know in my heart we will be unsuccessful but has anyone got any advice/ideas/experiences that I can use to strengthen our claim?

[NannaB]

Before the assessment, download the forms from the internet so you know what is expected. I just Googled. NHS Continuing Health Care professional guidance. It gives you a good idea of what they are looking for.Safety is a big factor. My husband was given the lowest mark for behaviour as he has never been aggressive. The professional's report was sent to me before it went to The Panel (a group of professionals who have probably never heard of PSP and certainly don't know my husband). I read it and made many additional comments. The behaviour section went from the lowest to the highest score as I said although he is never aggressive , he is stubborn and does things which are a danger to him and others. I mentioned several incidents when he got up and fell....in the pond, through the greenhouse, in the bathroom pulling the wash basin from the wall, pulling a chest of drawers over etc etc. I said he could fall onto people knocking them over. I also mentioned how he tried to do things he used to be able to do like change a lamp bulb without switching the lamp off. If your husband is no longer mobile, is he in danger of choking if left alone, does he try to get out of bed? Think of the worst day you have ever had with him as a normal day.

Read the report carefully and add as much extra as you can. It is very easy to make things sound better than they are when you are talking to the assessors so think of the worst day you've had make sure they know about it.

I don't know at what stage you are at with this but the first team come to see if you can go forward for the assessment. They were with me for 2 hours and then said my husband could have the assessment for CHC. A couple of weeks later 2 others came and then did a pre assessment to confirm he could have the full assessment which they did then, another 2 hours. At the first assessment they said who would be coming to the full assessment. I had no idea who one of them was so I insisted they asked someone from the Hospice who knew my husband and this happened so make sure at least one of the assessors knows yours well. They also write to the GP for a report, but again I said I wanted staff from the Hospice to send a report as well as my husband rarely sees our GP.

I used to apply for statements of special needs for children with additional learning needs and the process is the same so think this helped. We were successful the first time, but would have kept applying until I did if unsuccessful.

I do hope things go well for you and if you don't understand the form which I hope you look at first, speak to a friend or someone who can go through it with you. It helps to be prepared.

Wishing you all the best.

Nanna B

[denmob]

Thank you so much. You have triggered off lots of things that I have taken for granted as "normal" daily life, which it is not. My understanding from the first visit, which was a community nurse, that the next visit is a team of 4 who will then put the application forward to a board. I will do more research as you suggest but thank you again.

If you had time, it would be useful to know how you use the CHC funding and if you control it or they do.

Very kind regards

Denise.

[wifemo in reply to denmob]

Hi Denise -

Tony was "lucky enough" to qualify for CHC funding.

Our neuro-physio was attached to the local Hospice, and was a power house. If she asked someone to jump, they would ask "how high"?

The funding took over all the costs for the care company, and for equipment. They had to be asked and agree first, but for instance a really comfortable chair was supplied (requested by the OT) which reclined completely and was adjustable for sitting or lying, and was padded to fit Tony's body, (like a car rally seat - which pleased him no end as we used to rally in another life.)

When Tony came out of hospital for the last time, CHC picked up the tab for the care home (it was initially thought to be for palliative care, but he was there for 10 months before we lost him.)

They also paid for extra sitting when I needed to go to my sister's funeral. Reasonable, one-off requests would be treated fairly in my opinion.

As has been said -

Think of the very worst days you have ever had and roll them into one

Stress Progressive

Emphasise the non-safety aspect - to your husband, you, and everyone else

If you haven;'t seen your GP lately, go and have a talk with him/her to prepare him/her for the report

Speak to any professioinal you deal with already (SALT, OT, Community Team) - you need all the friends you can get.

Best of luck and, above all, Think Positive.

I still have that written on the whiteboard in my kitchen - Tony was a negative thinker, his "I can't" was my "how can I?"

Mo

[Heady]

Hi, not been there yet! So I am wishing you the best of luck!!!

One point though, you DONT know that you will fail! Sorry to be rude, but you MUST change that attitude. When they come, you must be thinking we WILL get this! Like NannaB has said, every question must answered for the WORST day you have ever been through, even if a particular thing has only happened once, it MUST be noted!

These forms the assessers fill out, are like computers, give them the right answer and you get a tick, the wrong one and the computer will say NO!!!

These people are there to help you, but unfortunately, their priority will be to save money, so don't give them the chance.

So remember, you WILL get the CHC, be positive and clear that you need it!!!

Lots of love

Heady

[jillannf6 in reply to Heady]

good on you heady and nanna b

it is vital to stress the worst scenario when claiming for these benefits

lol Jill

[denmob]

Thank you all. You are right about my attitude and I do need to change it. Like everyone little molehills - difficulties - become mountains to climb. I have just spent two weeks trying to get Amantidine, the manufacturers stopped producing for a while, what a pain. No one in essex seemed to have it, even the neurological hospital in London could only give us two bottles - 6 days worth! Sorry but I have filled in so many forms, rung so many companies, spoken to so many pharmacists that I sometimes feel that not only are we fighting a dreadful dreadful disease we are also having to fight with those who say they are going to help, advise and or support. Sorry for the whine but sometimes - well we all know it's frustrating. Anyway we all fight on and will certainly continue to do so. Thank you all for the support. Denise

[Heady]

Hi Denise, in our previous life, S & I would walk up mountains for fun! Now, I seem to have to scale one at least once a day. They never end do they? I was never one that had to top out, but if I don't now, our world collapses. I can cope with most, but it's the unexpected ones, or the mountains that people, who should know better, make you climb. Now those really make me cross, well, they would if I had the strength, mostly I scream, kick and cry, which i know does no good, but what do you do?

I suppose, just make sure you have decent boots on, they are clean and comfortable and keep on climbing. At least, we have something hard of our feet, when it comes to the kicking!!!

Lots of love

Heady

[denmob in reply to Heady]

Can't remember if I replied to you - you understand how it is. I try to think of molehills and not mountains. It doesn't always work but some days it does. Keep going. Denise

[nomansland]

Don,t spare these so called professionals ,as stated they likely know nothing of this illness....show them some of the posts on this site ,it MIGHT open one of their eyes enough to make a positive decision...remember, we, as people ,are all equal,as far as a professional in psp you are the one,not them,regards.,Rollie

[quickgel]

2 months ago capsey31 didn't even get to the second assessment because their community nurse said the patient was "stable". In his/her haste to deny CHC, the nurse didn't notice the word "PROGRESSIVE" in the name of the disease. I certainly hope never to be reliant on such a 'professional'.

Sad to say but it's not too pessimistic to consider your worst day currently, as the best you can expect in the future. Keep in mind you are not trying to rob the system, but trying to assist the system, by getting the help you will need to look after a very ill person. It can't be done alone, not even if you are superhuman.

Good luck and I hope your 'team' are truly 'professional' and not merely qualified. Jerry.

[highhopes]

I found if you are below 65 years old,there is more care available,and help.

Shropshire seems to care more if you have PSP

[denmob]

It is reassuring to see so many of you who are fighters for the cause. I had almost fallen into the trap of saying "what will be will be" and that is giving up. Apathy doesn't work. Have since researched CHC more and found there are also firms of solicitors who specialise in the field. Am toying with contacting them. Has anyone any experience of using a solicitor? I am going to fight, fight and fight to get CHC - my area is notoriously bad at giving CHC as there are many care homes in the area and the local authority has a funding issue - haven't they all?

I woke up feeling angry that we should have to jump through so many hoops and I am not going to give in to them.

Thank you for all the advice, Heady you made me start listing issues and helped me to think in terms of what reasons they would give to say no.

The fight begins!

[Heady in reply to denmob]

Hi Denise, there you go again! Think of all the reasons they HAVE to say YES!!!

Please, please, please remember, they give out this funding, to enable to patient to stay in their own home. Why? Because it's cheaper than residential care! So you are helping them to save money, by accepting CHC. Get that fact across straight away, or ask the question - "is CHC given, to enable my husband to stay at home, rather than go into a care home?" Let them be the negative ones, you MUST be positive. You must put them in a position that they have to justify what they are saying! Not the other way around!!!

Hope it works!!! Keep strong.

Lots of love

Heady

[denmob in reply to Heady]

Yes of course you are right again. Heady you are brilliant!

[cabbagecottage in reply to Heady]

it's exactly that . i wonder if anyone knows if push cam to shove and I became poorly myself would my

Daughter be eligible to double carers allowance . I don't claim it I receive state pension and she is working land earns over the limit to to apply

just a thought , Hope it never comes to that . we have both given her power of attorney . she is an only one .

[cabbagecottage in reply to denmob]

I am in the same boat de mob , but my husband is house chair or bed bound and needs constant hoisting , I shot myself in the foot because I do so much myself , He has bpnever been away from me into hospital or nursing home or day centre . . except to have a knee op when I had the Devils own job to get them allow me to take him home . they didn't think I would cope , They don't know me that was two years ago . it is hard to tell it how it is I hate saying he can't do this or that !!!!, I am constantly attending him . he cannot feed himself such poor coordination and he cannot find the plate in the first place but Sod's law if they come to assess he will

[Heady]

Wish I could solve my own probs that easy!!!!

Lots of love

Heady

[denmob in reply to Heady]

It is always easier looking in from the outside. Perhaps you need to share them. I am only too happy to talk - have been known to be "Gobby"

[SharonAB]

Dear Denmob,

It sound like what you are going through is similar to funding that I obtained here through the Disability Services Commission. To get funding here I needed to emphasis how each day and part of that day with the disease is unpredictable. In that you have no time line to follow, what happens in yesterdays routine may or may not happen today, tomorrow - no week or hour is necessarily the same.... and talking, swallowing, mobility abilities shift.

Also there was a need to address how you done so much already to accommodate and would continue to do so with support of.... and its needed reports from others sources to verify

Sadly - Basically writing your submission like it is to support a very unwell severely disabled child in an adults body.

Regards,

Alana - Western Australia

[denmob]

Thank you for your reply. All comments have been useful and I have added them to my list. Your point about no week or hour is necessarily the same ie talking etc.is absolutely true even today when I think about it.. The next stage is to find evidence. I am keeping a note book in my pocket to add to as the days progress. I have also got hold of a more detailed breakdown of the categories. Thank you.

Denise

[Heady in reply to denmob]

Talking about evidence, have you got an iPad or smart phone? Try videoing or recording, I sure your husband won't mind, if it's to help get the funding!

Lots of love

Heady

[denmob in reply to Heady]

Yes. I will try that idea. Have heard that the one of the team has been involved with other PSP applicants and been successful! Onward and upward.

[Heady in reply to denmob]

Well, if one of them has had experience of PSP, should be plain sailing! But don't let your guard down, YOU ARE GOING TO GET CHC!!!!

Lots of love

Heady

[denmob in reply to Heady]

You are absolutely right !! Thank you for you support Heady

[cabbagecottage]

How do they diagnose PSP

[jillannf6]

hi

[easterncedar]

jill! I haven't seen you here for a few days and have been thinking about you. I hope you are doing okay. I enjoyed the last party so much. When we have all recovered from the holidays, perhaps you would propose another one? Meanwhile, are you still with the choir? I wish I could have been there for the hymnathon. I used to sing in a church choir and loved it. Raised Methodist, and think their hymnals are great. The Congregational church here is focussed on the music, too. I'm not religious, but they let me in anyway! Do you have a favorite hymn? Love, Easterncedar

[MoragR]

Did you get the funding?

I've had a phone call saying my dad will not be getting it - haven't received the paperwork with their assessments yet. He lives in a care home , I wonder if that makes it even harder to qualify. I think that good care probably resulted in lower scores on the form. Ah well!