NHS Continuing Health Care for Dad who has advanced Parkinson's

[swithers]

Is there anyone on here that's been on this journey - to try and secure NHS Continuing Health Care for a parent or relative?

My Dad is in hospital with advanced Parkinsons and dementia and we can't care for him any more at home- we are looking to move him to a permanent residential home. We have agreed this with the hospital and social worker.

He can no longer walk, is on a no-solids diet, is largely incontinent, can hardly communicate by speaking and now has dementia. He's in a bad way in short.

I have asked the social worker about CHC and she said they run the assessment for this once we've chosen a home and he's arrived there as they will best be able to assess his needs in his new home. I'm puzzled by this - surely the best place is in the hospital where all the professionals are based who need to do the assessment?

I don't want to choose a home that they decide later down the line is too expensive for the NHS to pick up the bill.

Any advise on this is appreciated. Reading up as much as I can but personal experience counts for so much.

Thanks everyone in advance.

Jane

Have you been advised he needs a nursing or residential home?

If residential, NHS Continuing Care almost certainly won't fund it and he won't meet the criteria as it is all about the person having nursing needs.

From your brief description it does sound more like nursing than residential but there is a big difference between the two.

It is v unlikely a hospital would do a CHC assessment other than Fast Track to be honest - have you been given an idea of his prognosis?

Hey thanks for replying so quickly. We only had the meeting yesterday but we've been told it's a nursing home due to a combination of his needs and the complexity of his medication.

We will wait for the report to see his "prognosis". I understand your comment about the fast track and we're not at that stage. So it looks like we need to get this rolling once we get to the home.

Thanks again, Jane x

OK - Fast Track is for people with v short prognosis.

The full CHC assessment is very longwinded and staff in hospital aren't trained to do them. I've never seen a full CHC done in any hospital I've worked at, only Fast Tracks.

There is usually some sort of mechanism to get people moved to Nursing Homes short term pending assessment or self-funding kicking in.

Any Nursing Home should know whether they charge a top up over CHC rates if you ask - be warned, in some areas this will be almost every nursing home, or at least any nursing home you would be prepared to use.

Once you are there, they should also be very on the ball about when a person can switch to CHC.

From your description, your Dad definitely has things that score on the CHC assessment (have you seen this?) so it is worth asking as soon as he arrives.

My mum was in hospital last Christmas and the social worker asked the hospital to do the CHC assessment, as they always had in the past for her clients. They kept putting it off and she died shortly afterwards. Shortly after that my aunt, whom I care for, was admitted, and we were told that there had been a change in policy and the hospital no longer do them, they can only be done in the residential setting, as they are so time consuming and impacted on patient care, with the hospital being so short staffed.

I guessed therefore that Mum had arrived just before the policy had been changed. Some trusts may have stopped doing them a while ago, but it seems to be the pattern now that they are done in the residential setting.

HTH

I'm sure someone will be along much more knowledgeable than me, but be careful not to confuse assessment for local authority funding and a CHC assessment. The bar for CHC is very high and needs must be unpredictable and pretty severe.

Aside from in relation to Fast Track funding (for end of life care), Decision Support Tool (DST) meetings for CHC funding are not done in a hospital setting - this is because the individual is not optimised and at that time, you will not have a true representation of their needs in an acute setting. The CHC checklist may be completed, which is then the beginning of the whole process. Please trust the Social Worker, they will know the process well. Wishing you and your family well during this incredibly difficult time

Unless it's a fast track, the CHC process starts with the CHC. checklist which is straightforward and can be done in hospital. If the person meets the criteria for a full CHC. assessment then that is a much longer process and there is no guarantee CHC. funding will. be awarded.

You can look at the CHC. checklist here
www.gov.uk/government/publications/nhs-continuing-healthcare-checklist

It can be completed by a doctor, nurse or social worker and doesn't take very long at all. You can request that the checklist is done. If your dad is going to be funded by the council in the nursing home then the social worker should definitely be doing the CHC checklist as the Local Authority won't want to pay if it's an NHS. responsibility.

However, it does make sense that the assessment (if he reaches that stage) is done in the nursing home rather than the hospital as that is where his care will be delivered.

There is a very good organisation called Beacon that advises families about CHC funding. They have a very informative free guide to the process which is worth reading

www.beaconchc.co.uk/

I'm sorry you're having to get to grips with all this whilst your dad is poorly.

It is incredibly hard to get and requires a great deal of persistence on your part. They really don’t like giving it out, understandably, and in our case didn’t play straight - so make sure you note everything down, don’t be rushed into anything and question everything. We found this a particularly helpful site: caretobedifferent.co.uk/

Thanks to you all for the replies and advice you have really helped me. Jane