PSP Association
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Re-emerging after 'Not a DST'

Hi folks

Re-appearing after crash revision of CHC and DST's

Today was one of those sort of warrior carer days.

Our DST was today...

I had set up all of my advice sheets and printed off a DST form yesterday along with reading a big pile of... er, stuff.


0700 - Toileting

0730 - feed the cat and do my morning chores feeling very anxious about this DST thing.

0800 Big pot of tea and toast (home made brown bread) with butter and home made chilli sauce... Yes its a little weird, but this sauce is soo waking in the morning and boot the PC up...

Task: Completing a copy of the DST form referring to advisory notes. So that the scoring becomes a discussion point open to argument based on evidence. This is how it is meant to happen.

0900 - Check Lizzy - She's sleeping

1000 - Check Lizzy - She's drowsy and awake and happy with the cat sleeping on her.

1100 - Cat still on Lizzie - drowsy but awake - Liz sleeping.

1150 - Lizzie's ten minute warning for incoming carers.

1200 - Carers arrive

1215 - Hurrah - finished the DST form.

Make some food for Lizzie

1330 - CHC Nurse arrives. She is open and really nice. We work through the DST for three hours!

1630 - DST complete... Scores are high. Nurse tells me that this was a review not a DST. My jaw hits the floor... Nooo, there is more to come.


She says we should continue to get CHC, but we need a full DST now to cement it for another year. (Funding continues for now) Great :)

1640 - CCG telephone - The care agency (a really good one) has handed our case back to them - they just do not have the staff... New agency coming in next week. Check their CQC reviews - they score well.

1650 - Hospice Nurse telephones to change an appointment.

1655 - CCG telephone to set up a DST?! They did not know there was a review today? "Oh, so there was". They were very nice and agreed to send the same assessing Nurse. So hopefully scores will remain the same.

A few other things have happened since, but my mind is now on Auto!

Thank god for the big bowl of pasta in the fridge - Lizzie's tea was easy.

Gosh - this beer tastes good - think I will have another.

Happy and waiving - We are on course for continued funding.



18 Replies

Hi Kevin

Glad to hear things are ok

Hope both ok and enjoy your 🍺 beer

Sue x

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Bloody hell Kevin! Why is life never simple?!!!

I'm gutted for you the agency needs to change!! Such an awful shame after those lovely bulgularian ladies!!

You must knackered, screwing, stressed, worried, and more!!

I'll hope for you both that the new agency pan out well!! Why I wonder do these agencies take on jobs that they know they cannot fulfill?!

I hope chc gets agreed with no messing!!

Hugs and lots of em

Go on, open another beer, I dare ya

❤️ X


Kevin what a busy day, happy that CHC has gone well, sorry to hear about the care company, hopefully new one will be just as good as the old ones. We had to stop one of the careers coming into George, I am feeling really bad about it, but it is the best for George, he was coming in to shower George, with a double up, he was showering george in 3 minutes, who can have a shower so quick? He had been coming for over a year, I think he got too comfortable here.

Kevin you deserve a few 🍺. Hope Liz enjoyed here pasta and you get a chance to have a good evening. Big hug. Yvonne x


What a waste of time and money these continual reviews are !!!

Sounding good for you though.

Chill this evening !!

love, Jean xx

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Hi Kevin I am glad you continue to get funding but I am confused?!

We had a 3 1/2 hour DST meeting with assessor, we then got a full report which was sent to us by recorded delivery. We, as a family, had to submit our formal response to it and we were able to see the assessors recommendation which was a very disappointing 'No' to CHC. We are now as a result going down the social services route to get carers in despite the fact my Mother cannot walk, talk or barely eat.

I am thinking that you must of had a full DST with an assessor and there should have been social services in the meeting as well, with collation of multidisciplinary reports, neuro and GP reports and every other report? If you haven't had the full monty then it sounds like you have yet to have the DST? Yet you have the CHC funding?

Hoping you have had the DST already and this was only a review with you continuing to get the full CHC funding!




Hi Martina

Our case is weirder than weird.

So many mistakes made, but they were in our favour.

Our CCG has been getting Soc. Serv. to do their assessment and then at a later date doing the DST with just one nurse. The multidisciplinary part taking place when they meet together without us. (unlawfull)

There is a new manager and they are now doing it correctly. So whilst we were told this was a DST there was just one nurse who was actually doing a review of the old Fast Track funding. She naturally used the full DST format. Now she needs to come back with the social worker and do a proper DST.

As for your case. Please put an appeal in if you can.

Go to Beacon NHS and download their advice pack.

Beacon is the arms length NHS Advocacy service for CHC.

I would read the article on DST Assessments and then the one on appeals. They are very well written and clear. The best I have found actually.

If you are still stuck telephone them. They give one hour advocacy free and if you only talk for fifteen minutes you can come back for the remaining 45 min.

Right hand side of the page - "Register for your toolkit."

Good luck.

Come back to me if I can help more.



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Ok so as I understand it you have yet to undergo the full DST? Kevin good luck! we are here for you every step of the way as you have been for us x

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Thanks Martina

Yes, in a nutshell that is correct.

However as it is the same assessor for the DST later this month and the same form I am hoping the scores will be the same.

I did talk to Beacon Advocacy, some time back and the advocate merely advised I sit tight because, "This case is so far off beam it is bizarre, but it is in your favour."

Do look at appeal. It is actually very easy. You have six months from being notified of the result. All you have to do to stop that clock is to put a letter in saying you appeal and will send reasons after considering the situation.

Our care must be over £1000.00 per week... Beacon taking the case on would be some £500.00... But that reading and the free hour might be all you need.

Best of luck.

We sail upon that thin tissue of luck every day!



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Kevin the DST meeting is hugely emotional. Don't rely on previous hints of domain care levels..the assessor in our case told us she had been doing this for years and there was no way we could argue with her. I was totally brow beaten after it all. I had to take time off work with stress. We are here for you Kevin and we are together in our united determination to get the help we so desperately need..



Yes, I had tears describing Liz's behaviour and troubles a few times.

It is hugely emotional.

We had an aggressive DST last October... The CCG quietly scrapped it, despite the failed scoring. I told you our case is bizarre.

The fact that she said that to you is actually a reason to appeal in itself. It was highly unprofessional, but more importantly the DST is meant to be sensitive, and collaborative and she told you to 'shut up'. Unlawful.

I'll say that again... She was acting outside of the framework (think of it as law) and at the very least you could ask for an more appropriate assessment.

Sorry, I should not push you to appeal and I will not. Please rad that stuff, or a least call Beacon. You have nothing to loose.

Thanks for being there for us. This stuff adds suffering on top of the already care suffering stuff.

I am here for you folk too.



Kevin I just sent you a really long really lovely reply to your fabulous post and telling you how amazing your doing. It took me ages I submitted it and gone .it's gone disappeared I must of mis tapped the green submit reply button.

It took me soooooo long I'm very disappointed and sorry you didn't receive my reply a moment ago .

Anyway your brilliant and doing an AMAZING job and a very excellent loving carer xxxx

You could be an ambassador for PSP +"Association +Everything 😂xx.

No pressure Kevin on top of everything else in your life . Hehehe ..

Warm wishes and love to you both .Miriam xx

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Kevin you should send your post to PSP Association to be printed in their magazine...after your CHC has been awarded! What a total shambles? Do you think they are totally incompetent or are they doing to you what they did to us? To think they are going to cut it too? Beggars belief! For people who apply in the future it doesn't look good? I am going to hit someone with this hand held thing when they come to the door! Sick of reading how people are being treated so badly when they have enough to cope with.

Good luck to you and Liz. Fingers crossed that there is someone with a fraction of intelligence who sees how stupid and cruel this is.

Marie x

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Marie .

I / We /All would agree .The whole everything EVERYTHING that has been discussed and going on for PSP sufferers and their families who are caring and fighting (How Bad!!!!!).

Would the Queen and all the royals be treated like this answer NO!!!!! Makes me sick beyond words .

If this had of affected the Royals The whole WORLD would know and boy would PSP / CBD would be 100% the largest most massive hugest awareness campaign ASSOCIATION and all funding would be 100% no quibbles .Everything everything everythingwould be dealtwith calmly and efficiently and with upmost DIGNITY. makes me feel sick .And like you said Marie how bloody awful just watching and caring which is so hard and if you able to cope with let alone keep fighting for care and more than that and monies funding and more more more . And now Dad bless him in a home .supa dupa impossible for him to stay at home and carry on the ways things were.

Psp has left my mum unable any more to look after my Dad she didall she possibly could.

She nearly died after being rushed to hospital and having an emergency operation. Luckily she home and resting and recovering now .In every way PSP has I'm sorry like bullets in a gun aiming at all of us as a psp sufferer and members of their families trying to take a shot and kill but not quite but injuring us bad and then finally yes the bullet kills the one we reallyreally really love whof has been injured most so out of pain and misery leaving the rest of us with pain in our hearts seeing our loved one go.

Sorry I know this is super super strong words .


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Hi yep similar journey! Keep the faith Kevin, it will settle , we are now on yearly review, I now only have any communication with nurse lead head honcho, and I am honest with her the reasons why I will not deal with anyone else , we have been messed around I think to a cruel level , have you thought of taking a personal budget when it's all sorted? It wasn't for us but I think the idea is good ,

Keep smiling



Hi Julie

Personal budget might be an issue.

The care agencies here struggle to recruit. The current, very good, agency is is handing us back to the CHT because they cannot get the staff they thought they would get. So an agency which is giving good care this week might be running short of staff next week and the care quality goes down as they get stretched. Most agencies here run permanent recruitment and have interview slots once a week.

When I have tried finding an agency back in October I failed dismally despite having some advantage of working for the NHS and commissioning agencies for social care in the past (NHS / Soc Serv. integrated team).

The adds for personal assistants around here are few and uninspiring.

Smiling I can do today :)


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I'll have one too please (:

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Thank you for sharing such valuable information. I am just starting on the journey of funding application and have found your posts really helpful



Hi Tippyleaf

(Is that tea?)

So glad they have been of use.

If I was starting out all over again I would just download the National Service Framework and the Toolkit from Beacon NHS.

Everything you need is there.

Any issues and I will try to find answers for you. Just ask.


Good Luck


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