PSP Association

2nd Continuing Care Assessment

The Continuing Care Assessment people are coming to see my father, his care home staff and me for their stage 2 assessment visit on 30th January. Their first visit was last May. I'd be grateful for any advice about any extra information I will need to give. Are the questions the same as last time for the second level of assessment or different?

12 Replies

I believe the same form is used because the criteria for getting CCHC funding are the same. If you have a copy of the form ( you can download it) you can see the sorts of things they are looking for and how severe these problems have to be. If things have changed since last time he was assessed it will be noted. For example if he was deemed to be a danger to himself because he would suddenly jump up and fall over but he has now stopped doing that - it could count against him.

I would download the forms and go through them with the care staff before the meeting. Sadly the funding can be withdrawn if certain criteria are not met.

Good luck


Thank you, that is very helpful. I'll go through the forms from the last time with the care staff. I think we have even more proof that before of his being a danger to himself as he now has an unstable broken elbow as a result of a fall when the alarm pads were in place to alert staff when he moves - he doesn't "jump up" as you say but doesn't remember that he can't walk unaided! I know the odds are stacked against him being given funding, but we will try.


If I understand you correctly he had the first assessment. That assessment is to establish whether / or not your father qualifies for the full CHC assessment. one qualifies when you score severe in at least 2 out of the 11 criteria that are being used. Qualifying for the full CHC assessment does however not mean you will be automatically eligible for CHC. During the second assessment that is done by a social care worker, they go again over the same form they used for the 1st assessment. It offers the opportunity to raise issues that are perhaps not part of the 11 criteria, but which are important. For example, in the 11 criteria nothing is being mentioned about pain management. Or the prevention of pain. But you have to realise that the assessors are in most cases not clinical qualified staff. So if you have any supporting evidence, such as 6 monthly reports from a neurologist, speech therapist, physiotherapist, then it would be good to have copies at hand for submission.

After the 2nd session you should get a report for signature. you need to read that carefully and see whether / or not you feel that all you have said has been correctly reported. I had to return the second report twice due to inaccuracies.

Then you should get a third session, but this time somebody from NHS Health will participate together with the 2nd assessor. Then again all the issues will be discussed.

I am myself at that stage now with regard to my wife, so I have not yet had the experience.

But the 2nd assessor already mentioned to me that the bar for qualification is very high. And what they look at is how complex the issues are. So if one of the criteria can cause wider issues and impact on other criteria, then that will weigh more heavily.

The reason why it is so difficult to qualify for CHC is the lack of money in the NHS. Once you qualify, the NHS has to pay for everything that is needed to look after your father and it is not means tested. And that is also the reason that if there are cheap solutions, the NHS will go for those rather the more expensive ones. The same issues come also up when you go to your GP. For pain management for example they will opt for pain killers rather than physiotherapy.

I wish you good luck. And once again, any help you may get from professionals that treat or monitor the condition of your father is important.

1 like

Thank you, your information is very helpful. I didn't realise there would be a third level of assessment, I thought we would know after this visit. I know the bar is high and he may not be given funding but it is worth a try. Very best wishes to you and your wife, I hope that the process goes well for you.


Sorry I may have misunderstood . I assumed your father already had funding and this was the review.

If this is not the case and only the checklist has been completed then the next set of forms are slightly more detailed.

Then you really need to download the Decision Support Tool for NHS Continuing Healthcare. Make sure you emphasise the danger he is to himself and especially the unpredictability both of the disease and his actions.

Hope I have't misled you. Oh yes and make sure the care staff say exactly what the problems are - they often try to make things sound better than they are - just human nature I guess.


If this is the second visit after 7 month, then it is again only the first assessment to see if your father qualifies for the full CHC assessment. If that is the case, then shortly afterwards you will get another assessment by a social care person. And after that assessment the NHS gets involved, discussing with you the outcome of their assessment for eligibility for CHC.

As Joeglad has said, it is critical that you emphasize on the danger he is to himself. But you need also to think about what it is you want for your father. In other words what support systems (human resources) and / or what equipment, treatments he needs.

If he becomes eligible, also be aware of the changes in which the NHS provides the care since October 2104 as a drive towards patients choice. So I also recommend you read up on the subject:

Personal health budgets are being introduced by the NHS to help people manage their care in a way that suits them. They have been piloted in a number of places across England and, from April 2014, anyone receiving NHS continuing healthcare will have a right to ask for a personal health budget. The ‘right to ask’ will become a ‘right to have’ from October 2014.


Sorry if I wasn't clear. I have looked out the paperwork. We had a meeting and went through the CHC Checklist in March last year. After this I received a phone call to say that my father qualified to go on to the next stage of assessment and that is happening on 30th January. I have downloaded the Decision Making Tool and I can see that it is a very complex document, but I will go through it now and make an appointment to see whoever at his care home will be dealing with it before the official visit. Many thanks Gerko and Joeglad.


You may also find it helpful to have a read through the PSP Association's information sheet on Continuing Healthcare which you will find by clicking

If you would like to talk things through, please do ring our Helpline and Information Service on TEL 0300 011 0122.

Very best wishes


1 like

Hi Morag

My mum qualified recently. She has PSP. The final meeting was quite 'informal' in some respects, as it was carried out at the care home my mum lives at, but very formal in other ways. Mums consultant, social worker, a case worker and her personal nurse attended. There was an official chairperson. The doctors and nurses went through all the points on the assessment tool, in turn and in quite formal medical speak. As things went on they were explained to us, if and and when we needed. Then we were asked if we, her family, had any comments to add.

Due to the nature of mums symptoms it was quite cut and dried that she qualified. At the conclusion of the meeting we were told that there was enough evidence to show full qualification and that it was just a matter of waiting for the written confirmation.

The meeting puts all sorts of things into perspective, just how progressive the symptoms are, how many things mum can no longer do and so on.

I hope things go well at the meeting. I'd be prepared with any statement you wish to make, but remember its all about the qualification tool, and if the criteria is met. If the team can show that the criteria is met then all should go well.

Good luck



Hi Morag, I was lucky enough to have a very caring Hospice involved in my late husband's care and it was them that initiated the application for CHC. On the initial assessment two area's were assessed as being low risk one being behaviour and the other skin care. I disagreed about the behaviour as Dave had to be watched 24/7 as he'd be out of his wheelchair/bed/chair (he could not weight bear) at a blink of an eye and ended up in A & E on a regular basis day and night , this behaviour didn't present when he had his one day a week day care at the Hospice neither did it stop until he died. The skin assessment was assessed as low risk until the involvement of a District Nurse who pointed out that his skin hadn't broken down due to care he was receiving at home, moved every two hours, wasn't left in wet clothes or bedding etc., Dave refused to be catheterised, wouldn't tolerate incontinent pads or convene, and as time went on it became very difficult for him to alert me that he needed toileting. As for my personal statement I just wrote about the worse scenarios that we had come through and how it affected the whole family and how when you think that you've solved one problem it's replaced by another, usually worse, the nature of this terrible illness.

Dave got CHC straight away and was placed in a fantastic nursing home a mile away from where we were living as I was exhausted, staff pulled out all the stops for him and yet he still managed to end up in A & E on a number of occasions to the distraught of the staff. Dave had 5 months of CHC.

Dave has been gone now 29 months and I still wake up at night when I hear a noise, takes me a few moments to realise it's not him on the move.

I wish you luck in your application and hope all goes well with you and your father.

Regards Rita


Mum was diagnosed with PSP nearly 5 years ago although we noticed something was wrong a few years earlier. She is in the nursing part of a care home. She had a CHC assessment a couple of weeks ago and a second one next week. I will download the forms and read through them beforehand.

Thanks for the information from everyone, really helpful.



hi \

I got CHC *(2nd time applying via the hospice) who were v good and presented the case for me on a medical basis rather than just what i or my partner or the CM had to says (and it ha sheen great getting it as i am not so worried about the cost of my care now or in the future) it WAS a worry as to where the nursing home fees would come fm but i think i can forget about that for the moment

i am still managing without someone at night time - my partner had to get me up off the floor at 3a m one morning a couple of weeks ago as i had fallen getting back fm the toilet to the bedroom and wa s STUCK!




You may also like...