PSP Association
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A good CHC assessment experience

Applied for CHC almost as a training exercise never expecting to get it. Ive been doing the caring myself except for two daytime sessions when I have fixed activities of my own and pay for a carer to be with Jon. For this reason I didn't have much professional input to supply. A DN whom we had never met completed the checklist which resulted in a full assessment 2 weeks later. I followed advice (probably Kevin's) and filled in the domains as they would be completed at the assessment. As much as anything it concentrated my mind but also gave me a comparison with what they were doing. In the event I scored 2 domains higher and two lower than them and we reached agreement. Health and social services conferred privately for 2 minutes and that was that. I was asked what provision I wanted - 24/7 of course - and was granted 2 carers for four 1hour visits a day. It couldn't have been easier.

We are hoping to move to a bungalow in December and will then unfortunately be in a different county so have to start all over again. However I have all my notes and the fact that we have been granted a good package very recently so I don't anticipate too much of a problem.

We are presently on holiday in a care home where I can request care as and when I need it so am getting all toiletting, showering, dressing and getting into and out of bed done for me so I'm getting some idea of how my workload will lighten.

Thank you all on the forum for your really helpful posts on the subject which I'm sure contributed to a successful outcome. What a wonderful supportive family.

By the way, I know I haven't posted for ages but I have been reading a bit, just no time to write. Selling and buying houses and cars has kept me occupied.

Love and hope to all my PSP family.....

16 Replies

Well done xxxx



Good job.

And good to see you clocking in here again.

Wishing you both the best.

And, yes the scoring is so subjective.




I am sorry I do not know what the initials CHC stand for. I am new here. Are u in the US?


Excellent new ... very well done. Jx


Hello, I'm sorry, we use the initials so often most people know what they stand for. Continuing health care is a UK national health service award of care which can be provided either at home or in a care home. It is free and not means tested.


Brilliant! We had an ok experience too, it is important to post the positives . CHC should also fund respite.

Just a thought, we thought seriously about moving, but decided with cost, upheaval, losing our neighbours and whatever we looked at needed alterations we would make the house fit us, through floor lift and wet room put in , minimum mess , both in within a week , jobs a good un!

Disability grants are available , regardless of what your bank balance is, allocation is based on income.

You may be moving for other reasons i know but just a thought.

People are funny though, one comment ' will you be able to sell it', do i give a ####!

Have a good one


1 like

Like you I decided we should stay put and make modifications not an ideal house we have but it is home and we have great neighbours etc. With the huge personality changes my husband has with PSP I was worried about moving and being more isolated.

We each have to juggle the PSP pieces around to suit best we can - wretched disease!!


Great news thank you for sharing. We are just about to embark on CHC application and this is reassuring. Sounds like following g Kevin's advise is the way to do it


1 like

Wow! Brilliant news!! Well done!! Agree Kevin's advice is definitely the only way to go!! X


Well done you, amazing how different authorities respond, seems so wrong that it depends on your postcode. Ben was awarded CHC funding in May but getting extra support has proved to be the difficult part. Care workers aren't in plentiful supply where I live and I opted for 2 carers for 2 visits a day as didn't want intrusion 4 times a day. However I did want a morning of 3 hrs sit so that i can go to yoga classes with friends and a coffee afterwards and it has proved quite a problem to get that sorted. Finally think it has been sorted just waiting for the ok. The only other help I get is a morning taxi on his hospice day but they couldn't provide an afternoon taxi because of school collection commitments. The taxi has to travel 26 miles to collect ben and another 10 miles to hospice making it a 72 mile round trip, seems crazy as there must be other disabled taxi companies much nearer but we are just on the E Sussex/Kent border so they don't have contracts in Kent where he hospice is! I ask you how crazy is that!!! I have had 4 respite days every Ben stayed in a local nursing home and another booked at end of October. Not very good at letting Ben go as he needs are so specific and it worries me that they won't do it properly. The worst thing was that he didn't have a reclining chair in his room and that is an absolute necessity and I will have to ensure there is one present before I would be happy to let him go again. I was still pleased when funding was awarded but it's still not easy. Still I shouldn't moan as we are lucky to have been awarded the funding which does ease the financial burden.

Love Kate xxx


Thank you for all replies. About moving. We do have lovely neighbours and will really miss them but we live in a hamlet of just a few houses, no public transport and 1 1/2 miles to the shops. It's an old house with stairs too. It's not easy to adapt and we will be better off close to town where we already have many friends through the U3A.


This is just as it should be. We should not have to shout, scream, rant and rave - it is what our loved ones need and we should NOT have to beg for it.

Well done.



Well Done; I applied for CHC after being refered by my doctor, but did not get it as my wife was not disabled enough!!!!!!!!!!!! My wife has Corticobasal degeneration (CBD) for passed three years and can do absolutly nothing to help herself, she cannot walk, dress, undress, toilet, wash, bath, shower,feed, drink, comb her hair, brush her teeth, get into/out of bed, on to/out of a chair, see, read, if I have missed anything else you can think of...she can not do any of those either! But she can hear and smile and remember me sometimes.

As I am fit 70 year old I can cope with no other help, but will apply again if my health goes down hill.


That is so distressing. It is so arbitrary. I hope you are able to appeal.

love, Jean x


So sorry Tjayoo . Strange to say that reading your wife's difficulties she sounded so much more disabled than my husband but when I think of it he can't do any of those things for himself except brush his hair. He can walk with his rollator but can't get himself onto it. He can sometimes feed himself but often not. Jon has dementia too and a history of falls. All these things add up to risk, but it still seems there are huge differences between authorities. Did you read the excellent information from Beacon and fill out the assessment form yourself for reference before the meeting? I'm sure that helped too.

I'm a fit 72 year old too but am relieved to have help on the way (it hasn't started yet) before I ruin my health with all the physical hard work. Dont wait until your health fails before you apply again. Have you appealed their decision? Again Beacon has a lot of advice on that. And the PSPA had some good helpful information to give to the assessment lead and for me on what to emphasise.

Good luck for the future. I do hope you get some help.


Thanks Jean and Richanne, I'll certainly seek help from Beacon before filling out forms again.


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