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PSP Association
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Why CHC was refused

Well Folks,

Finally I have the letter telling us the Panel`s decision to withdraw CHC.

I have just ploughed through the DST and the Panel`s notes, but the letter with them includes the following quote ...

"It is recognised that many people consider that the need to have carers should be enough to indicate they are eligible for the NHS Continuing Healthcare, especially when 24 hour care is required. However funding arrangements are currently laid down by the Government and there is no automatic entitlement to full funding by the NHS unless the NHS Continuing Healthcare criteria is met."

My mind is still spinning (and probably will be for some time) after reading all the paperwork. I am seeing my MP next week, so I have a few days to clear my mind and present my case.

I feel cheated that my time is being spent on this when P should be getting my full attention. His choking is getting much worse this week and his drinks are now of custard consistency. The GP tried to prescribe Mucodyne (?) but P was unable to swallow it so we are now going to try a patch.

The panel for CHC concluded that there was NO complexity OR intensity OR unpredictability to P`s illness - words fail me !

xx

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Nanbabs maybe you need to take the info from PSPA to them? Especially the later stages? What a shambles this all is? It is about not enough money going into the NHS pure and simple. They can say what they like but Jeremy Hunt is still in his job and he has ruined the NHS. Not content with that he is simply ignoring the gaps in funding for CHC, for tests which should take place quickly, and even GP's. I am amazed that we haven't got demonstrations on the street to be honest! Either people don't know because they are healthy, or carers have no energy.

Good luck to you and tell the B******* that you are spreading the word and have support on here and you do. Have you contacted Beacon? I am glad you are going to your MP. Here's hoping you have a good one! Big hugs to you.

Marie x

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Thank you Marie,

I sent a copy of the PSPA `s guide for GPs and Primary healthcare professionals to the Panel but I don`t know if they got it or if they read it.

I have contacted Beacon before and I will do so again next week now that I have something for them to work on.

Thanks for the support - we need to stick together.

xx

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Absolutely disgusting, makes me so so so angry!!!!!!! X

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Hi Satt, it makes me angry too, they patronise us and hope that the more obstacles they place in our paths, we will give up. They don`t know me - it makes me all the more determined.

xx

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I remember when several people had to fight and be rejected and fight again for their loved one for CHC....I'm in the US but may I just support you to keep fighting.....you/your husband will be recognized......

AVB

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Hi AVB,

Well, we fought initially to get CHC (took 18 months +) and I don`t intend giving up yet !

xx

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NanBabs

Good for you chick ....keep fighting that good fight!

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I am so sorry that you have this to deal with at this time, when your focus should be on quality time together.

Agree with Marie. This is political !

Big hug from Jean xx

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Thanks Jean,

I am becoming quite a good actress - putting on smiles when I visit P even though I often get little or no response, when deep down I feel like screaming.

We are being cheated out of our final times together - P has had this evil illness for probably 5/6 years and seems to be deteriorating again, so who knows how long we have ? I shouldn`t be constantly worrying over my next step etc.

xx

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NanBabs you are so right! This is what happened to me with my husband. They didn't refuse CHC just wouldn't tell anyone if he had been awarded it. By the time they did it was too late. I got a cheque backdated around the time he died! I spent all our precious time ringing them and looking at Nursing Homes. I wish I had taken him home but I didn't realise he was so near death.

I rang the CEO who I know and they refused to allow me to talk to her!! I am determined to contact her to tell her what went on. However I suspect she already knows. Someone I know knows someone who works in the department and she has told her it is awful. She said that people who are desperate and crying on the phone are shouted at and bullied! Disgraceful.

Lots of love to you.

Marie x

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We are in same place except I have him home, with carers.

I don't seem to be able to make contact with him. He is so detached and it feels I am losing him.

At present we have a palliative team caring for him at home. I wonder if I will lose this when they assess it in 6 weeks time. We shouldn't have these stresses at this time.

xx

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So sorry to hear about his poor health now.

You might like to look at this before the assessment... its brief.

caretobedifferent.co.uk/con...

Our hearts go out to you both

Liz and Kevin

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Thank you, Kevin and Liz

Chris is not on CHC but has the palliative care team from the hospice when he was discharged from hospital. They said its reviewed after 12 weeks but not to worry. I think they see him as terminal. I haven't questioned much as I generally believe in not rocking the boat if its ok. Just hope it keeps on as they are a lovely team.

The GP is also very supportive. PSP seems known here [ although not by the GP ] so I hope that means more understanding.

However I feel its necessary to have knowledge if it all goes pear-shaped !

I just get so upset on reading how badly people are treated. Its disgraceful.

Hope things are stable for you two at present ?

love from Jean xx

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Hi Jean

Things are OK for us - Thanks.

We've got a good agency... What a difference that makes.

Liz is slipping a bit now - She is finding it hard to make herself understood and eating is getting to be a big problem... Speech Therapist visiting next week to assess feeding.

Yes, I try not to rock the boat too... In fact I try to keep us invisible from the CCG as much as possible... We've already dropped off their radar once whilst paying for care... It was a change in circs. which brought us back to light and they could not assess fast enough - three times! (That took another eight months.)

I am now keeping a log of events like falls and impulsive high risk behaviour for future CHC assessment evidence

I'm so sorry Chris is at palliative care stage.

Love from Kevin and Liz (I read pots to her)

xx

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Just thought...take another copy with you to them with relevant bits highlighted! Tell them you would like them to read the highlighted sections while you are there, so you can answer any questions and there can be no confusion?

Marie x

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Jean you are so right no one needs this stress with our loved ones with this horrible bloody illness, hopefully you MP will be able to settle this once and for all. George is also coughing and choking, so much now, I feel so useless xxxx big hug to you all . Yvonne xxxxx

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Go to the NHS Guidlines on CHC funding - I think it is paragraph 38 and I quote

" It is also important that deterioration is taken into account when considering eligibility including circumstances where deterioration might reasonably be regarded as likely in the near future . "

This seems to be routinely over looked . PSP is progressive , it's in the title , people do not suddenly improve , they may plateau for a while but the long and the short of it is that it just gets worse with different symptoms manifesting themselves . If you are appealing tell them you are citing this paragraph and include the Pathway to Care provided by the PSP Assoc which out lines in detail the potential stages of the illness and the care needed at each stage .

How they can withdraw funding on a progressive illness beggars belief they are obviously illinformed on their own guidelines and do not understand thje complexity of this illness .

Goodluck Georgepa

By the way when I cited the above paragraph when I was going to the independent review body they suddenly changed tune and said they would have what they called a desk top review and the result was they changed their opinion and we got funding . Battle on - exhausting I know but worth it .

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Thank you Georgepa,

I need some positive support even though I know I`m right to appeal, I do have moments when I wonder if it is all worthwhile !

I will certainly include a quote from paragraph 38 in the appeal and even though I sent a copy of the PSPA`s booklet for professionals with the DST, I will definitely send another copy with the appeal.

I am seeing my MP early next week (I am trying to sort out how to explain and evidence P`s illness - and PSP in general) then I intend to contact Beacon again as I wasn`t able to give them the reasons for refusal before.

xx

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Hi NanB

That's a total downer.

It's simple though. Did they score correctly. If so and if you met the threshold there then it comes down to,"NO complexity OR intensity OR unpredictability" These are hard to prove as they are fairly subjective.

You may well be in the territory of the Coughlan Case.

This link addresses the complexity... Unpredictability issue (its not a long read):

caretobedifferent.co.uk/con...

Feeling for you both.

Warmly

Kevin

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Thanks Kevin,

Seeing the MP next week, then depending on what he says, I intend to contact Beacon again with all the details.

P is proving his own case at the moment - in the last 10 days his swallowing/choking has become much worse. We have seen the GP 3 times this week because P was unable to cope with Mucodyne (?) in liquid form and we are now trying a patch. His drinks are now custard consistency and he is not eating or drinking very well.

I put on a brave face for the world but feel very down and defeated at the moment.

I will certainly mention the Coughlan (and Grogan) cases to my MP and as he is a barrister I am hoping it will pique his interest.

xx

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Forgot to say that the assessor differed from my own ratings on 2 disciplines and the Panel downgraded 2 others to `Low`. On what evidence they could base that, I don`t know ! Overall we scored on my ratings, 1 severe, 5 high, 2 moderate, the rest no needs or low. The assessor was 1 severe, 3 high, 4 moderate. The Panel was 1 severe, 2 high , 4 moderate & the rest low or no needs.

xx

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Disgusting, I dread getting to this stage of the illness. I lie awake worrying about it. Fight fight fight . It's not old age issues it's a neurological illness. It's "fight the good fight with all thy might "" Do these assessors get a bonus for every £ they claw away from a sufferer, I wonder.

Best wishes in your endeavours xGW

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Thank you GW,

Although I know 100% P `deserves` CHC, all this hassle makes me have a little doubt occasionally. Even though the assessor said it`s not about money, I think you would have to be terribly naïve to believe that.

xx

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What a terrible system this is !!!

I know what you mean about doubt. Most of us don't want to ask for help, let alone beg. Talk about kicking when you're down !

Big hug from Jean x

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Thanks Jean

I`m glad you understand. It makes me feel that they are grossly underestimating P`s suffering and that makes me really angry.

Because PSP is rare and so many medical professionals haven`t heard of it they don`t appreciate all that it throws at you.

Thanks for the hug - it was much needed !

xx

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Bloody unbelievable NanBabs, it beggars belief that they can withdraw funding. I hope that your MP fights your corner and you get the result you so deserve, words can't describe how angry I feel that we are the mercy of these heartless robots that can dispel the fact that we are human beings already going through the toughest of times supporting our loved ones and don't have the energy to keep appealing for what should rightfully be given to care for them. I'm pleased that there are lovely people on here aka Kevin and Georgepa sharing their valuable information when they have enough on their plates already, Thankyou so much to them and all others who offer practical help to support our case when having to fight for funding.

As you can probably tell, I have steam coming out of my ears and suspect that I will be on the same position at some point along the way, can't imagine how we would cope without the funding, I truly believe it could send some folk to the tipping point and that can't be right in anybodies eyes.

Sending you much love and support

Kate xxx

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Thank you Kate.

I really don`t know where I would be without the support of all on this list. You all give me the strength to carry on when I feel like giving in, but I`m sure we all feel exactly the same. It helps enormously to know that everyone here is going through the same horrible experience as we have to watch our loved ones suffer.

xx

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