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Sensitive terminology? - Carers UK Forum

Sensitive terminology?

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When my husband was discharged from hospital with terminal lymphoma, he had an assessment for NHS Continuing Care. The hospital organised all this very efficiently, and made sure we had everything we needed - bed, air mattress, carers three times a day, etc... Shortly after he came home, the local authority sent (addressed to him) the summary of the Continuing Care Panel's decision. This listed his needs, according to the National Framework assessment domains, pretty accurately. Just one sentence really hit me: 'Has prognosis of less than 3 months.' To write in those terms to the patient himself seems to me to be the height of insensitivity. Luckily, I didn't show him the letter. It was quite accurate - he died a month later - but there was no need to include that information in such a crude way, since his case would have been reviewed 3 months later anyway. Knowing you have a terminal condition doesn't mean that you know (or want to know) that the medics think you'll be dead in less than 3 months. I have since written to the council, and they have apologiseed; how can I make sure that ALL councils are more sensitive with information like this when they communicate with their clients?
Hello Angela,

First of all please accept my condolences.To have coped with caring for your dad and then your hubby must have placed a tremendous strain on yourself.There will be many here who understand what you have been through.

I am not too sure how you could reach all those involved in sending similar letters out to other people,like the one addressed to your husband,maybe members here can advise.
Only thing I can think of is contacting the NHS direct.

x x x

This is one of those subjects that is so difficult, Alison. I can think of situations where at least the carer needed to know what was likely to happen, and sometimes they get it so wrong that they shouldn't have said anything. And there are those that simply don't want to know.

I've seen a few situations in recent years where - if I'd been the patient - I would have wanted to know.

But in all of these cases, not as part of a continuing care assessment. No matter how you write, it will always be cold and hard, and needs to be handled sensitively - preferably on a face to face basis.

The only way to stop this sort of thing from happening is to get your MP involved and on your side to take it to government: then the government can amend or update guidance on this to ensure that it doesn't happen again. Not perfect, given how often guidance can be ignored, but the most certain way I can think of.
Thank you for the suggestions. I wrote to the hospital's social worker too, because I realised that she must deal with lots of other local authorities, and now I'll write to my MP; that's a good idea. I'm not wanting to dictate what information they put on the form but just asking them to be more sensitive in how they communicate it. In hospital, it is all face to face, but this letter came from local authority staff whom I have never met, and whose main concern is that the NHS money should be used appropriately. That's their job, and their assessment of the situation was completely accurate, but I don't think they considered who might read the letter and how it might affect them. If the letter had been delivered by hand, by the local palliative care nurse, it would have been a gentler way.
I just want people to learn better ways of dealing with these situations; my husband wasn't just a 'case'; he was a person. As Shakespeare said: "If you prick us, do we not bleed?"
I'm perfectly healthy, but if you sent me a letter like that I would drop dead on the spot from fright. Not helpful - surely some form of euphemisms could be dreamed up such as:

" You're doing as well as expected, but I wouldn't bother to buy any lottery tickets from now on"
" No rush but if it was me I would be checking my will was still valid... tomorrow"
"Er - you know that list of things you always wanted to do before you die - how about cramming as many as possible in...no rush old boy, take your time, but preferably next week"
" You don't have any holidays booked this summer do you? You do? Oh dear! "