NHS continuing healthcare review for Dad in nursing home with terminal cancer

[TeaandHobnobs]

Looking for any advice...

My dad has been in a nursing home since March 2014 under the NHS continuing healthcare funding - he has terminal cancer (prostate cancer which has metastasised to his bones) and is completely bed bound.
We have been notified that a review of his continuing healthcare funding is going to take place on Thursday 20 November, and I have offered to attend the meeting with my mum, who I feel is struggling to cope at the moment and could do with some back up.

However I have really not been very involved in the admin/management side of his care up until now (rather kicking myself and wishing I had taken more initiative, there have been many problems with the care home that I could have addressed already), and I have no idea what to expect / watch out for.

As we see it (and how it has been seen up until now), he only requires full time care because his medical condition has left him semi-paralysed and incontinent, and it became impossible for him to be cared for at home (on the advice of the care team looking after him, and his hospice team). Therefore I don't see why his funding should (potentially) be removed. It is possible that it won't be, of course, but I am scared that it will.

Does anyone have any advice about research I could do before the meeting? How best to prepare?

Thanks for reading

The checklist that they will use is here, and you need one A or 5 Bs to get CH - its really stringent. So worth going through it with the care teams in advance and gathering evidence as to why he 'scores' - for instance (as far as I understand), someone needing routine morphine would get a B, but someone with breakthrough pain requiring oral morphine to control and a complex pain management programme would get an A.

Brilliant, thank you so much CMOT, I really appreciate it

I think once you have the care package they have to have a very good reason to take it away - and a diagnosis of terminal cancer (and bed ridden) is very unlikely that it will be taken away. If he was assessed as needing it, and his health has got worse it is not likely it will be removed. So I would presume that it is just a routine review. I would take cmot's advice though.

We were on the other side of that situation - terminal cancer, practically bed ridden couldn't get the right combination of people to do their jobs to actually get the NHS funding agreed. Luckily (or not) my mum died within a month of having to have nursing care, so we just gave up fighting to get the NHS funding.

Sorry you are having to go through it :(

Oh throckenholt I'm so sorry . We paid for my dad's care at home for almost a year after his diagnosis (which was the point at which he became bed bound/incontinent) because social services were so unbelievably awful. It was only when he was taken into the hospice for respite care a year later (having fractured his arm somehow, as the cancer has weakened his bones) that the hospice did all the work and fighting to get the funding in place for us.
Thank you for the support I am printing out the checklist CMOT linked to and reviewing it for Thursday.

It is so sad that at the time when you are least able to fight the system is when you most need it. And it comes as a shock, because you don't expect it to be so truly obstructive.

I hope it goes as well as possible for Thursday, and that your dad is not suffering too much, and has some quality of life.

Thank you both for your advice. The review went well, I think - the reviewer was happy that his funding should continue and will make that recommendation. It was also a useful assessment of how he is doing overall, which is good. He was fast tracked through the process to get him into the nursing home in March, so I think this was the first time anyone really took stock of the whole picture.

He does remarkably well for someone who is bed bound/paralysed and incontinent - I can't think of a single other person I know who could keep their spirits up like he can. He really is awesome

His pain is mainly under control, and he keeps himself mentally busy, so for the most part, he does ok. We are just happy for every extra day we get with him

I hope everything resolved on your favour. Unfortunately what you experienced is a somewhat common experience I hear about on a daily basis. It sounds as though you received a fast track assessment to move you swiftly
Through the process