CHC assement today, feeling shredded.

[Katiebow]

Well the assessment took place today, they were here for 3 hrs and I'm absolutely shattered now. Not sure how it went as you can't tell what's going on behind that friendly facade. I'm fearing the worst as the Parkinson's nurse who supported me said East Sussex is tricky to get funding. She added that in Brighton, where she previously worked were much more generous in giving CHC funding even though is actually in East Sussex. The wine 🍷 is open and I don't much care after that gruelling experience.

Love to all

Kate xxx

[Suebatt]

Hi Katie

I hope you get it but if the fools say no appeal straight away

I was refused full funding in December and had a review beginning of April and we got it

I got advice off a lot of people on here and I I read up on things

Hope things go well

Sue xx

[Katiebow in reply to Suebatt]

Thanks Sue, just have a negative feeling that it will be refused, I just couldn't make out if they were supporting the claim or not, bit like a driving examiner very very impartial. Thanks for the support.

Love Kate xxx

[Julieandrog in reply to Katiebow]

Hi

They have to tell you if it is going to panel, at least then you know you have a fighting chance, if they did not do that at least ring them to clarify.

Enjoy the wine , ice cold white I feel !

Julie x

[doglington]

You've done what you can. Chill out. Fingers crossed.

Joining you in a glass !!!

love, Jean x

[Katiebow in reply to doglington]

Thanks jean, fraid the whole bottle disappeared tonight. Xxxx

[Hidden]

Hi Kate I wrote a very similar post about our CHC meeting a few months back. We are in West Sussex and we were not sure how it went either at the time. I actually felt so drained after that gruelling 3 1/2 meeting that I took the next day off work. Look after yourself over the next few days as it really is an awful ordeal to go through.

We got a letter yesterday to say we weren't eligible but we could get the part funded Nursing care of £155/week if my Mum went into a nursing home.

I am considering making an appeal but need to get my strength up for the next round of it..

Good luck with it.

I am wondering if we might have the same Parkinsons nurse?!

Martina xx

[Katiebow in reply to Hidden]

Hi Martina, thanks for the message and sorry you got denied, disgraceful isn't it. The P nurse is called Tammi but I forget her surname at the mo. She works for our area of East Sussex so doubt it is the same one. I was so glad of her support, although she had to leave after 2 hrs as she had another appointment. I got quite tearful which isn't really like me. I will appeal if it is rejected and use a solicitor as I don't have the fight in me but feel that it could actually save money in the long run. What I hate is the fact that Ben doesn't really fit into the boxes that they ask about and it makes you feel that you are telling lies about the challenges of PSP. Fingers crossed that they prove me wrong. xx

[Patriciapmr]

Good luck Kate, I hope you get it! xx

[Katiebow in reply to Patriciapmr]

Thanks Pat. Xxx

[Kevin_1]

Hi Kate

We have our review next Wednesday... Totally agree - They are gruelling and long.

Don't forget you have the right of appeal and second level to an external authority.

Hugs to you... Enkoy yhe wine :

Kevin

xx

[Katiebow in reply to Kevin_1]

Thanks Kevin, have a feeling that they will try to riggle out of the funding but will appeal, another hurdle to jump I have a feeling!

Love Kate xxx

[Kevin_1 in reply to Katiebow]

Yup, could be.

We have had to fight every inch of the way.

It has been exhausting at times.

More, for a months at a time we have lived with fear and doubt, wondering how long care would be available.

It undermines any possible sense of well being.

Our hearts go out to you.

XX

[Katiebow in reply to Kevin_1]

The thing that shocked me was being made to realise how much care I actually have undertaken without actually really realising. It has been a wake up call and highlighted that I need to get time to step back from all of the responsibilities and get the help that we both deserve. Xxx

[NannaB]

Oh Kate, I thought about you today. Now it's the waiting game. Not too long I hope and with a positive result.

XxxX

[Katiebow]

Thanks Bev, fingers and everything crossed. Xxx

[Marie_14]

Kate fingers crossed that you get it. You can give extra information apart from that which goes into the boxes. If you have a SALT person you can get their report attached as you can anyone who sees your husband. You could do with a Community Matron. Do you have one? If not contact your District Nurses and ask for her details. She can then support you at an appeal if things don't go your way?

The Parkinson's nurse Garry had was useless so she wasn't there. Was your social worker there? If not why not? She/he should have been. Don't worry for now but get in contact with the above people if they are not part of your husband's care team. Sober up first though! 😊

Marie x

[Yvonneandgeorge]

Kate everything crossed for you, enjoy your wine, Yvonne xxxx

[vlh4444]

Do hope you get it. I'm sure you've done all you can. Fingers crossed.

Vicki

[Georgepa]

Chin up -time for the second bottle .

[Cp612]

Hi Katie - our application meeting was horrendous too. There and then we were told we did not qualify and back-up paperwork followed about 2 weeks later. Our Parkinson's Nurse attended as did my husband'S social worker. I have not appealed as still reeling from that session in March I think it was. I collapsed later that evening with BP and stress related issues. I am gathering myself for the next onslaught when I am mentally, emotionally and physically stronger. My husband declining week on week but I understand in what way the NHS CHC domains are to be reviewed and have found further help from a Nurse who deals with these cases, albeit a sister-in-law of a work colleague! Best wishes to you both and fingers crossed you get what is deserved xxx