NHS Continuing Care help please?

POPPYOSCAR

It is a long story but the basic facts are these.

My Brother who is in his forties after being rushed to hospital spent 5 months in there.

He was finally discharged on the request of his family.He was discharged under a NHS Continuing Care plan taking place at his own home.

He has brain tumours and secondary lung matastasis. He has soft brain tissue where some of his skull and brain has been removed.

He cannot move either of his legs and only one arm and hand. He has had seizures. He is lucid but has his eyes closed most of the time and often gets confused saying he is going to work tomorrow and that he is in a different house. He is obviously confined to bed. He is under several lots of medication and has limited life expectancy.

Anyway, he has just had an assessment. At the first meeting my SIL got very upset and so for the next one the team dealing with it asked a nurse to attend the meeting away from the house on her behalf.This nurse convinced her that everything would be alright and she would fight her corner for her.

This was a big mistake as she did nothing of a kind and his NHS continuing care has been stopped.We believe that the correct procedures have not been followed and want to appeal.

Can anyone point us in the right direction as we have researched online but it seems to be a minefield and really needs an expert.

custardy

I had to google this.

The team's assessment will consider your needs under the following headings:

behaviour
cognition (understanding)
communication
psychological/emotional needs
mobility
nutrition (food and drink)
continence
skin (including wounds and ulcers)
breathing
symptom control through drug therapies and medication
altered states of consciousness
other significant needs
These needs are given a weighting marked "priority", "severe", "high", "moderate", "low" or "no needs".

If you have at least one priority need, or severe needs in at least two areas, you should be eligible for NHS continuing healthcare. You may also be eligible if you have a severe need in one area plus a number of other needs, or a number of high or moderate needs, depending on their nature, intensity, complexity or unpredictability.

so I assume he was assessed as not meeting this criteria?

Fast-track assessment for NHS continuing healthcare
If your health is deteriorating quickly and you're nearing the end of your life, you should be considered for the NHS continuing healthcare fast track pathway, so that an appropriate care and support package can be put in place as soon as possible !!!8211; usually within 48 hours.

An organisation called Beacon gives free independent advice on NHS continuing healthcare. Visit the Beacon website or call the free helpline on 0345 548 0300.

Have you contacted Beacon?

fryedslyce

These two websites may be of help too.

https://caretobedifferent.co.uk/the-coughlan-case-and-grogan-case-your-9-point-checklist-for-nhs-continuing-care/

https://www.farleydwek.com/care-to-be-different-2/

POPPYOSCAR

Yes I have been on those.

I suppose I was really wondering if anyone else had been through this and could advise the best course of action.


Judging what has happened in the case of my brother and from what is happening to others it would appear that they will use any means available to get out of it.

He was discharged from hospital on the maximum care package, he has not improved, he has deteriorated.

This meeting did not even take place with him there, Judgements were being made by them previously asking him a few questions at the last meeting a few weeks ago. No one from the family was there.
They did not agree he gets confused. he thinks he has a Ferrari on the drive, at times he tells people to be quiet or they will wake the baby upstairs. He cannot remember what he had for breakfast.

I am disgusted with the whole thing, my SIL does not need this and IMO should not have to going through all this, when she should be concentrating on spending what little time she and her children have left with him.

POPPYOSCAR

custardy wrote: »

I had to google this.



so I assume he was assessed as not meeting this criteria?



Have you contacted Beacon?

Yes, something we disagree with.

That is something I am going to do.

I told my SIL to get in touch with the representative from the Carers association who have been very helpful to her so far and someone is going to be in touch with her.

Finefoot

Have your family got a copy of the assessment? It has to be seen and signed by the patient or their representative before going back for review. Someone is not doing things properly, or does not understand how it works. look up the guidelines on the net, arm yourself with information.

POPPYOSCAR

Finefoot wrote: »

Have your family got a copy of the assessment? It has to be seen and signed by the patient or their representative before going back for review. Someone is not doing things properly, or does not understand how it works. look up the guidelines on the net, arm yourself with information.

It is a long story but at the first meeting my SIL got very distressed so the CHC asked a macmilllan nurse to stand in for her for the second. She must have signed it, I will ask my SIL.

At no time did she say she did not want to attend she was persuaded by the nurse that it would be in her best interests not to.

We had a meeting with the social worker and she was not aware of several issues that had not been documented and therefore not used as 'evidence'.

The whole thing is a disgrace. Someone from the Hospice said she had not seen anything like it in 16 years of her doing her work.

My SIL has been ill-advised, taken people on trust and they have badly let her down.

She now has someone coming round to financially assess my brother.

POPPYOSCAR

She has also had a letter from the CHC asking her to make an appointment to go in and see them and they will help her with her appeal.

She has been advised not to as they will only try to wear her down so that she does not appeal.

The whole thing beggers belief!.

elsien

A capacity assessment should have been carried out to see if your brother was able to be involved. If not, he should have had a representative - presumably this ended up being the Macmillan nurse.
The assessment should be carried out based on the evidence as to how he is now, not when discharged from hospital. So what evidence have you got to show that he has deteriorated since then? Does he have carers coming in, do they keep records? Ditto the nurse and any other professionals.
For example you say he has had seizures. If these have stopped, then they won't be relevant for the current assessment unless they start again. It's less about the diagnosis and more about the impact as it is now, which is what you need to show.

These assessments are very much based on what can be proved, not what people say. That's the difference between an assessment at home and one in hospital - the hospital has all the records to look at. Families, for obvious reasons, don't.
Maybe SIL/carers could start to keep a daily diary which covers the above domains? And it's not just about the need but also the severity and complexity which is hard to get your head round when you've not come across it before so getting some help would be a good idea. Have they sent you the appeals information?

Lorian

Does SIL have a copy of the completed assessment checklist - its vital information for the appeal.

Could you take over and deal with the appeal?